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February 2023
Q: I was diagnosed with UC a few months ago. I was put on Uceris then Stelara. I have been in remission since I started the Uceris and am tapering off. I have also been recently diagnosed with inappropriate sinus tachycardia (fast resting heart rate), which seemed to start with the UC symptoms. The cardiologist is not worried about it, but cannot explain why it is happening. I have seen that UC can cause a fast heart rate. Is this true? Should it get better if the UC gets better?
A: Sinus tachycardia can occur due to several different causes and typically is considered a response to some underlying process. These can include infections, dehydration, anemia, low blood oxygen saturation, heart disease, lung disease, pain, anxiety ingestion of stimulants, to name a few. Several of these etiologies can occur in the setting of UC, so it is important to work with your doctor to investigate and possibly address these, before a diagnosis of inappropriate sinus tachycardia is made, which is an unusual condition.
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Rajesh Shah, MD
Gastroenterologist
February 2023
Q: · My son was diagnosed with a Crohn's flare. He started Remicade and methotrexate & having his 3rd infusion next week. More prednisone was also prescribed since his symptoms haven't improved (his doctor said the symptoms might also be side effects of the Remicade). He sleeps all the time, can't work, and is depressed. My son believes the Remicade isn't working and should try Humira. Do you have any recommendations for him?
A: Going through a flare is physically and emotionally difficult. Also, symptoms associated with the flare can worsen or contribute to symptoms of depression. It is recommended that all symptoms be discussed with his IBD specialist. While there may be adjustments in his medication regimen, he may also benefit from a consultation with a GI mental health provider to aid with managing the complexities of IBD. They will assess for severity of mood symptoms and help create a treatment plan to aid in improving mood, fatigue and overall functioning. To locate a mental health provider, encourage your son to speak with his IBD provider as that provider may have someone on the team or have a local resource. He can also use this directory: www.romeGIpsych.org.
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Megan Riehl, PsyD
Assistant Professor of Medicine
January 2023
Q: I am wondering if there are ways to help reduce my stress levels related to having a chronic illness in the workplace. Should I tell my supervisor that I have IBD? I feel overwhelmed at times at work and feel like I am not able to complete the task needed on time. I am unsure how to cope.
A: Stress can have a significant impact on our mind and body. Work is one aspect of life that can contribute to stress for various reasons. In people with chronic GI conditions stressors related to work can come from the actual job demands, while also GI-specific stressors such as physical symptoms, access to bathrooms, navigating medical appointments and more. If aspects of IBD are impacting you at work, it is likely time to identify who at work can assist with navigating your rights as someone in the work force with a chronic illness. Depending on your needs and work environment, you may be able to provide very basic information about your needs and the impact of your health on your work. You can share what you feel comfortable sharing. You may benefit from working with your medical provider and employer to complete FMLA (Family and Medical Leave Act) or ADA (Americans with Disabilities Act) paperwork to receive reasonable accommodations. Having these accommodations in place can assist with stress management by reducing some of the burden if you need a day off for the management of your health. You can find important information about your rights as a person with IBD here: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/employment-and-inflammatory.pdf
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Megan Riehl, PsyD
Assistant Professor of Medicine
October 2022
Q: My son was diagnosed with Crohn's at the end of March 2022. He was put on Humira, developed antibodies and was switched to Remicade. He received his 3rd induction dose of Remicade on Sept 8 (his levels look good with no antibodies, and C-reactive is back to normal). He is still having diarrhea 1-2 times per day with some cramping (down from 6-7/day early summer). When should we expect these symptoms to improve?
A: Thank you for your question. I am glad that your son is feeling better, but I you are correct, true clinical remission (absence of symptoms) is the first goal of therapy. Sounds like he is responding to the therapy both by lab data (normal CRP) and symptom improvement. I am not sure how long ago he received the third dose but, he should stay at least as good, if not further improve by dose four. This is important since that is the first “maintenance” dose and is likely scheduled eight weeks after the third. Likely, your son’s gastroenterologist will be checking an infliximab level then to assure the dose is optimized for good disease control going forward. Ultimately, the next goal of treatment is to assure healing of the lining (mucosa) of the bowel. This can first be measured with a stool test for inflammation (calprotectin) and later, by repeating imaging with an MR enterograpy (MRE) or repeat colonoscopy. Studies have shown that healing of the mucosa is associated with our best long-term outcomes, so it is very worthwhile to look for this. Also, if symptoms persist or recur, such follow up testing would help clarify whether active Crohn’s disease is still contributing. Hope he is feeling back to himself soon!
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
August 2022
Q: My 14 year old has been in "remission" for about 1 year now and still receives the remicade infusions every 8 weeks, but with this new school year she is now experiencing sort of panic attacks/anxiety. I've made her appointment with pediatrician but looking to see if this is common in youth with an IBD?
A: There can be many anxiety provoking things that happen around back to school time for kids (schedules, lockers, new friends, school changes, etc). So, first it is important to normalize this for kids with and without chronic illness. For those with IBD, there may be some additional stressors that I would encourage you to explore with your daughter. Dr. Brad Jerson is a pediatric GI psychologist who just published a great article recently about school considerations that can impact those with GI conditions (https://www.healio.com/news/gastroenterology/20220823/back-to-school-with-digestive-disorders-parentschool-partnership-key-to-patient-support). Some of the factors to consider include bathroom access, dietary sensitivities, navigating your health with your peers and more. All of this can progress from worry to anxiety to panic if unaddressed. It is a great idea to chat with your pediatrician, and consider talking with a GI psychologist (if you are near one) or a general mental health provider who can assist with anxiety management.
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Megan Riehl, PsyD
Assistant Professor of Medicine
August 2022
Q: I have a 19 year old son who is in college, he is very nervous about sharing a room with someone who doesn’t understand his illness. He is not always vocal about having IBD and does his best to manage without many people knowing when he is in pain, etc. How would you recommend he handle the situation with having a roommate and living with IBD? I feel like he may be having anxiety related to this.
A: I would say that the anxiety of having a roommate for the first time is common for most college students. Normalizing this for him may be a good place to start. It would them be helpful to work on language that he can become more comfortable with around talking to his roommate (and friends) to help them understand how IBD can impact his life. While discussing bathroom issues can feel uncomfortable, once he gets the conversation about his needs out there, it will likely help to reduce the anxiety. He doesn’t have to be graphic or overly detailed but help give some context to why he may spend some extra time in the bathroom, need to use the bathroom urgently, need time for rest or eat differently. It typically takes a lot more energy to avoid these types of conversations over time than it will to have the initial conversations and hopefully have them be well received. He may also see that his roommate can be supportive and assist him when and if he needs that.
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Megan Riehl, PsyD
Assistant Professor of Medicine
August 2022
Q: Hello. I am a mom of a teen daughter who has been diagnosed for just shy of a year. She is often times staying in her room, avoiding friendships, and even refusing to eat at times. I am worried she might be depressed related to having a chronic illness. Are there things I can do to help as her mom? Ways to teach her to cope with her illness? Anything would help!
A: Thank you for being curious and aware of these changes in your daughter. A new diagnosis of a chronic disease can lead to many life changes, new normal and at times, fear about the future. Watching for signs of anxiety and depression are important. It does sound like your daughter is experiencing some symptoms of depression. I would recommend speaking with her gastroenterologist about whether there is a GI psychologist or GI-specialized mental health professional for her to consult with. If not, you can check www.ROMEGIPsych.org or look for a mental health provider who specializes in working with teens, chronic illness, depression and anxiety via www.psychologytoday.com or another via the Crohn’s and Colitis Foundation resources.
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Megan Riehl, PsyD
Assistant Professor of Medicine
July 2022
Q: After being diagnosed with Ulcerative Colitis in Oct 2021, My gastroenterologist put me on Uceris (Corticosteroid) and Lialda. I felt good with no active symptoms for 3 months. I started weaning off Uceris after that and quickly saw my symptoms come back (mainly diarrhea and blood in stool). After starting and weaning off Uceric again, my doctor wants to put me on Imuran or biologics(Humira) since I cannot achieve remission consistently. Do you have a recommendation for first time use?
A: I agree with advancing treatment to biologics or immunomodulators if there are active symptoms despite mesalamine, but I encourage you to a. Verify objective active inflammation with stool calprotectin and/or flexible sigmoidoscopy. b. Have a comprehensive discussion of ALL your medication options (what you listed are only a couple of options - besides azathioprine/adalimumab examples of other options are infliximab, vedolizumab, and ustekinumab). c. come to a shared - decision with your doctor about the best treatment for your UC.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
July 2022
Q: I have been taking Humira for a year and a half. Since starting the drug, I have had scalp psoriasis. Now, after a year and a half I'm starting to develop the same reaction. I have hives that come and go in different areas as well as some skin inflammation and after my last injection my lips ballooned until I took some Benadryl. My question is, is it possible to have an allergic to a drug like Humira after taking it for so long?
A: Yes , this is entirely possible and skin reactions can occur at any time after starting a medication. Humira can cause certain kinds of psoriasis, hives, and lip swelling in some cases. In your situation, I recommend consulting with a dermatologist, possibly an allergist, as well as your GI to determine the best course of action moving forward.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
June 2022
Q: My 12 year old son is now facing a ileo colectomy. What can we expect afterwards? How can I help to make the procedure and healing time go well?
A: Surgical intervention is a big step at any age so congratulations on being proactive in helping him (and therefore you!) through this. First and foremost, these are great questions for you to ask your surgeon and their team. I assume you are referring to an ileocecectomy (removal of a portion of the last part of the small intestine along with the first part of colon = cecum). This is the most common surgery performed on those with Crohn’s disease. Accordingly, your son’s team likely has significant experience with this and can assist answering your questions. The hospital may also have a Child Life team and other supports—feel free to use them to get yourself educated and your son educated at an age appropriate level. There may also be other pediatric patients and their families who have been through the same experience who have volunteered to speak to others and share experiences with the Power of Two program. Feel free to take advantage of all such resources. Most commonly, this surgery is now performed laparoscopically (minimally invasive surgery) which allows early hospital discharge and much less post-operative pain than in the past. The surgical team will lay out a plan for return to full activity which will slowly occur over a few weeks. Also, keep in mind that while the surgery will remove the bowel already damaged by the Crohn’s, it does not cure the condition and there will need to be a plan to prevent disease recurrence after the surgery. So be sure to speak with your medical team so that you are fully aware of the post-operative plan to prevent disease recurrence. Also, in addition to using medical therapy to prevent recurrence, it is recommended that a colonoscopy be performed within 6 months of the surgery to assure that the plan is effective and that Crohn’s inflammation has not recurred. Best wishes for a rapid and full recovery!
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
June 2022
Q: My son has been on Remicade since 2013, he has Crohn’s. He has been in remission. He has had issues with acne since he started the medication. Since switching to generic we noticed he began to get cystic acne. He had to have them removed. He is 26 yrs old and is now dealing with all these cysts. Frequent visits to dermatologist, having to get 4 steroid shot in cyst. Do you think this is a side effect from the medication?
A: Thank you for the excellent question. It looks like he started infliximab around age 15 years which is a very common age for acne so this should not be seen as a surprise. However, your concern that this has persisted to this degree is noted. Traditionally, the main medication associated with acne is steroids but it looks like his medical team has done a great job staying away from that. Whether he is receiving originator infliximab (Remicade) or a biosimilar should not make a difference here. Dermatologic issues can be seen with anti-TNF therapy and while acne is not the most common, it is a consideration here. Some of the newer biologics approved for Crohn’s affect the skin to a much less degree and he should be encouraged to have a discussion about this with his team. Additionally, since you discuss this as cystic with the need for removal from his buttock, he should at least confirm that this is truly acne and not a condition called Hidradenitis Suppurativa (HS) which is sometimes associated with IBD (especially in cigarette smokers!) and would require a very different approach.
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
June 2022
Q: After being diagnosed at 78 years old with acute colitis - the hospital and GI Doctor recommended a low fat diet. They did not set me up with a nutritionist or give me a guideline for foods. I still have a lot of gas even with just keeping my diet simple. I know I do fill up with gas if I don't eat every 4/ 5 hours after breakfast/lunch and dinner. Are there some recommendations on diets to follow or go to foods to limit gas?
A: Excessive gas could be due to numerous causes including active inflammatory bowel disease or dietary intolerances. Gas in your stomach can be caused by swallowing air when you eat or drink via drinking through a straw, consuming carbonated beverages (soda, beer), eating too quickly, or chewing gum. Limiting these behaviors and practicing regular, mindful eating may help reduce symptoms. Certain high-fiber foods may also cause gas, including beans/ peas (legumes), raw fruits and vegetables (especially those with intact seeds and skins), and certain whole grains. Sugar substitutes, or artificial sweeteners, such as sorbitol, mannitol and xylitol, found in some sugar-free foods and beverages may also cause excess colon gas. Due to the fact that various medical conditions may increase intestinal gas, bloating or gas pain, I would recommend discussing potential underlying causes with your medical provider that way you can obtain more tailored recommendations for a potential diet plan for your inflammatory bowel disease or food intolerances. For further help finding a qualified registered dietitian nutritionist or food and nutrition practitioner who is right for you, check out: Find a Nutrition Expert (eatright.org)
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Do you have any recommendations on how to help my child get the proper nutrition while also adhering to a special diet? I find it hard to get fruit and veggies in to his diet.
A: Some additional strategies to incorporate fruit and vegetable intake include “sneaking” them into dishes and using preparation strategies that could improve tolerance (as allowed on your child’s special diet): fruit/vegetable smoothies, juicing, pureeing vegetable soups, cooking rice in vegetable broth, baking fruit muffins, etc. When following a limited diet plan, it is key to get tested regularly for vitamin and mineral deficiencies and supplementing as needed. It is oftentimes recommended to take a multivitamin with additional vitamin and mineral supplementation as needed. Additionally, if overall intake and appetite are limited it can also be helpful to find an oral nutrition supplement drink such as Kate Farms or Pediasure to help fill in the gaps.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Hello, my husband has UC and finds it difficult to adhere to specific diets. Anything that you find helps with people who have to eliminate so much from their diet?
A: Following elimination based diets can be challenging but finding additional recipes, eating out strategies, or meal delivery services that can assist with food prep can be helpful. Below are some helpful resources for structured elimination based diets, a recipe database for those with dietary restrictions/allergies, and meal delivery services. Food Allergies: Safe Eats® Allergy-Friendly Recipes – Kids With Food Allergies IBD- AID: https://www.umassmed.edu/nutrition/ibd/ibdaid/ SCD: https://www.nimbal.org/ https://gikids.org/ FODMAP: Hundreds of Low FODMAP Recipes & Resources | FODMAP Everyday Low FODMAP Diet | IBS Research at Monash University - Monash Fodmap AIP: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/ https://autoimmunewellness.com/ CDED: https://mymodulife.com/ Meal Delivery: Daily Harvest, Hello Fresh, HungryRoot, Epicured
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Hello, I'm 58 years old and was diagnosed with Crohn's a year ago. I've been receiving infusions of Inflectra every 8 weeks which may be helping because my calprotectin is back to normal. I will know more when I have the next capsule endoscopy. Meanwhile, I am wondering if it is normal to be very tired after the infusions. I am sleeping for hours and don't feel like I can do anything for a couple of days.
A: I agree with your work up to make certain first that the disease is in complete remission and it’s not active disease and inflammation causing your symptoms. Another suggestion could be to determine if you are getting any pre-medications with your infusions such as Benadryl which can cause fatigue and discussing with your providers if there is a -non-drowsy option you could use for premedication instead. Lastly, I would check to see if your vitamin levels have been checked especially your vitamin B12 levels. This is absorbed in the ileum which it seems may be the area of your Crohn’s disease and can commonly be low in Crohn’s patients. Low B12 is associated with fatigue and repletion of this can help energy levels. Additionally, making sure iron levels and vitamin D are replete are also critical. Crohn’s disease has been associated with a chronic fatigue even when in remission that can affect certain people. There is ongoing research in this field to better understand the causes and therefore formulate better therapies to treat it. This is a diagnosis of exclusion and would explore other diagnoses first including checking in with your primary care doctor to make sure other organ systems are checked such as thyroid. One method that helps patients is to increase exercise to 5 times a week for at least 30 minutes. This tends to increase energy.
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Alyssa Parian, MD
Co-Clinical Director of Gastroenterology & Hepatology at Johns Hopkins School of Medicine
June 2022
Q: I have had a full colectomy for my UC. I'm now experiencing some inflammation in my J-Pouch and my lower intestine. I'm currently treating with steroids but would like to also try an anti-inflammatory diet as well. Have other patients had much luck with this diet? Also, I was advised not to eat nuts after my colectomy but opinions vary. Have others been able to digest almonds or cashews post colectomy?
A: Inflammation in the lower intestine (or pouch) is common but really depends on multiple factors or why that is happening. We don’t have the best evidence for diet therapy in people with J-pouches, and there is argument whether there are diets that are truly “anti-inflammatory” to your bowels. While there are foods that people tolerate differently (nuts, seeds, fatty foods), I don’t usually have diet restrictions for my post-colectomy patients. While some things can perhaps cause more diarrhea, they don’t necessarily cause the inflammation. I would recommend speaking to your doctor prior to making any changes.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: I recently was diagnosed with ulcerative proctitis, a more mild form of ulcerative colitis. I went to see my doctor after having consistent blood in my stool but no other symptoms. I had a colonoscopy done back in September 2021 and was diagnosed with ulcerative proctitis. I was prescribed 1000mg mesalamine suppositories. I have been searching for alternative, natural treatments for my condition as I would prefer to not be on medication. Is it possible to treat my condition without medication?
A: Treatment decisions still are made on a personalized basis. Some of my proctitis patients can go on as-needed therapy, but if you are having consistent blood in the stool, no one wants that for you, and generally speaking, the risks of undertreated inflammation is much higher than any drug that you may take. However, I would recommend speaking to your physician.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2022
Q: My daughter has taken Humira and is now Stelera for her Crohn’s. It seemed after her injection she develops a localized reaction at the site that last 3days. She takes Zyrtec 3 days prior and 3 days after. She takes Benadryl and Tylenol pre med the injection. She has no antibodies to the drugs and it seems it may be from the filler in the injections. Are there any medications that do not contain these fillers. Or is there another pre med she can take. At this time she is unable to Remicade.
A: I hope the Stelara is working and that your daughter’s Crohn’s is in deep remission. You are describing a local site reaction, and these can be quite common. You are correct that this may be from the non-active ingredients (we call these excipients rather than fillers) or it could be a local reaction to the medication. One non-drug interventions that helps with this is to assure that the site of injection is rotated from dose to dose. Additionally, we have had great success with “conditioning of the injection site” by applying an ice pack for 10 minutes prior to the dose. Regarding medications, if it is not painful, she may not need the Tylenol and the Zyrtec or a Claritin may be enough to allow her to stop the Benadryl which often times causes drowsiness in adolescents.
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 16 year old daughter was diagnosed with UC in October. She has taken steroids and Mesalamine with no relief from the bleeding. They are now wanting to put her on Humira. I am nervous about putting her on biologics and was wondering what some of your experiences have been with using biologics? Can she achieve remission?
A: The PROTECT study was a prospective, multi-center, NIH funded study of newly diagnosed children and adolescents with ulcerative colitis (UC). Important findings of this study included the fact that 40% of pediatric UC will be maintained by mesalamine. Which means 60% of children and adolescents with UC will need biologic therapy to maintain steroid-free remission of their UC. In truth, you daughter is already on the most toxic medication we use for UC, that is, Prednisone! In addition to anti-TNF therapy such as Humira or Remicade, Entyvio (vedolizumab) may be an option for her. This is administered intravenously like Remicade but the main target is the proteins in the bowel which assist movement of inflammatory cells from the blood stream to the intestine making the effect more specific to the bowel (“gut specific”). In addition to decreased systemic effect and being a more targeted therapy, there was a head-to-head comparison trial of Entyvio vs. Humira and Entyvio showed some superiority in this trial (called VARSITY). Officially, Entyvio is approved for ages 18+ but there is substantial pediatric experience and in light of the findings in VARSITY, we have had good success getting Entyvio for our less than 18-year-old patients.
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 23 year old son was diagnosed with severe ulcerative colitis. My question is what to expect after we get his current situation under control. The priority is getting him better but am wondering if he will be able to return to his job as an apprentice lineman when he is in remission. He works long hours outside in the heat? I am worried about him getting dehydrated spending so many hours in the sun.
A: I am sorry that he is having to go through this and want to reassure you that remission = normal. So your health-related concerns would be the same as for anyone else who has a demanding job. Your priorities are exactly correct—first the remission. Once that is there, he should wear sunscreen, cool clothing and stay well hydrated—same as everyone else on the line!
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
February 2022
Q: Hello. I am diagnosed with UC. I have been in an active flare for over year. My doctor wants to put me on a biological since I can not get in remission. He left the choice up to me. Do you have a recommendation for first time use?I have narrowed it down to Humira or Entyvio.
A: This really is more of a personalized decision, and depends not only on your colitis, but perhaps other problems you may have related to your colitis (ex. Arthritis or other conditions outside of the bowels). Both, however, are reasonable choices, and both are better than being on steroids long term or being in a flare all year.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
February 2022
Q: I have been on Humira for years, I have had the shots and booster for Covid. I haven't had problems till I came down with Covid before Christmas. I had 3 rounds of antibiotics and 3 rounds of steroids, monoclonal antibody treatment. Covid seems to be gone but has settled in my lungs, throat sinus, headaches. Now on another round of antibiotic and inhaler and cough meds. I postponed my Humira injections, worried to go back on because of this, advice please.
A: I’m sorry to hear that. Certainly you should talk to your lung doctor about the safety of your biologics in the setting of COVID. However, generally speaking, we do not think that your risk of getting sicker with COVID is not increased on humira.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
February 2022
Q: My son was diagnosed 10 mo ago w/ Crohn's - pretty severe inflammation but all in the bottom third of his colon. No strictures. Stelara was unsuccessful. Also tried Prednisone as well as Budesonide on top. He's trying Entyvio next. We want to avoid immunomodulators since there's lymphoma in the family, and we're even concerned about anti-TNFs. The statistics for biologics in terms of how often they are successful look bleak. I'm wondering how often it is that no successful treatment is found.
A: Keep in mind that statistics from clinical trials often set a high bar for success, so while the numbers may look bad, most biologics do help with at least an improvement in the inflammation. I think that entyvio sounds like a reasonable choice, but there are other options, including anti-TNFs. Not knowing his entire situation, lymphomas are not often genetic, so the family history, as well as the low likelihood of lymphoma would not sway my decisions. Remember that the risks for unchecked inflammation and chronic steroids in his Crohn’s is almost always higher. I would recommend further conversations with his doctor.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
February 2022
Q: I was on xeljanz from last three years and i was doing completely fine. My last scope which was held on august 2021 looked good. I developed a bloody stool again recently. I am not sure its working anymore, what should I do?
A: Bloody stool, or pain or diarrhea, is not always ulcerative colitis flaring. You should talk to your doctors to see if anything else could be going on. If the blood in your stool was for a short period, it may not be your colitis.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
January 2022
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication (Stelara). I’ve had a small bowel resection in 2016. I am having trouble keeping my vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. Looking for ways to get extra vitamins into my diet. Would it be helpful to use dietary supplement drinks such as teami or orgain?
A: While supplement drinks such as Orgain can be a valuable way to receive additional nutrition, depending on the extent of your small bowel resection and current Crohn’s disease inflammation, your ability to absorb nutrients may be limited. I recommend discussing these concerns with your doctor and/or dietitian to have your vitamin/mineral levels checked and what might be best to supplement with (in the dose you need and form that you can absorb and tolerate best).
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: I am a distance cyclist and ride over 7000 miles annually. I've been fairly recently diagnosed with UC. I feel that riding is therapeutic for me and really enjoy day long rides. I've always had difficulty staying hydrated it seems. Also, I utilize an electrolyte drink, and frequently consume sugary gels and snack bars to maintain my energy....I'm wondering if these foods exacerbate my condition and since UC is inflammatory in nature, is my inflammatory response from exercise contributing?
A: UC primarily affects the colon, which has the primary responsibility of removing water, some nutrients, and electrolytes from partially digested food. Concentrated beverages high in excess sugars draw water and electrolytes into the gut, making stools loose and unformed, and without the colon fully functional in the case of UC, this can lead to further electrolyte and fluid losses. Your body absorbs fluid best when there is a certain ratio of sugar to salt to water. Oral rehydration solutions take full advantage of that ratio and could help keep you hydrated while biking. Ready to use products include Liquid IV, Drip Drop, and Pedialyte. A homemade recipe includes using 4 cups of G2 or Powerade Zero with ½ teaspoon of salt. I would suggest discussing what medical limitations may or may not exist given your active disease status in terms of physical activity intensity and duration with your medical provider.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: My 14 was just diagnosed with Crohns and it was pretty bad. He is on remicaid but has also suggested a diet in which half of his calories come from a “formula” such as boost or ensure. We are very concerned that boost and ensure have added ingredients and sugars that might not be so healthy. I have recently been looking at organic protein based powders. I sampled one today from a company called Orgain and I very much enjoyed it but wanted to be sure it met all of the requirements we needed.
A: Partial enteral nutrition is a treatment for IBD. Formula provides 30 – 50% of a patient’s estimated calorie needs. It can be used with medication to inducing remission. Patients consume formula and take solids generally while taking medication. Studies have shown that the formula used does not have to be elemental or peptide-based. The protein source from the recommended formula can be intact. Orgain and Kate’s Farms have intact protein and could be used.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2021
Q: I am 53 yr old male with Crohn’s disease over 20 years ago. Had remicade 8 years ago, surgery to resection intestines over 20 years ago. started Inflectra. Been going to ER every two weeks now for past 2months. Having very bad stomach pains and can’t use the toilet after eating.. this just started happening two months ago! food is just sitting in my stomach and won’t move. When I get to ER they give me steroid and pain meds, in a couple hours I’m like new man! What could be wrong?
A: I am sorry that you have had to visit emergency room so often. I would suggest discussing with your GI doctor and getting a full re-evaluation with him/her. It seems that you improve with steroids which goes in favor of Crohn’s rather than constipation.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: My 17yo daughter was diagnosed with Crohn's 11 months ago. Currently being treated with Humira (since July). The last 3 1/2 months she has had several bouts with throat swollen glands. They are visibly swollen on the outside and painful to touch and painful inside. ENT thinks it is related to Crohns.GI specialist said he never heard of that. Overtime, the antibiotics do "work" but then 2 to 3 weeks later the swollen glands return.
A: I am sorry to hear that your daughter is having problems with swollen glands. Is her Crohn’s is under control? I have seen some children develop swollen glands on Humira and some of the considerations are: check Humira levels and if it is too high, consider titrating the dose. Discuss with your doctor if she should be seen by ENT and whether she needs an immunology evaluation.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
December 2021
Q: My granddaughter was diagnosed with crohns 3 years ago. She had to have a small section of her intestines removed. She has been on remicade and was doing good until her body was being covered with red blisters. Her head has such terrible psoriasis she has patches of bald spots and now has these lumps filled with pus. They switched her to Stelara and says this will clear up. How long will it take she is 16 and not happy.
A: I am sorry that your granddaughter has to go through this problem. We all realize that body image is very important at this age. Please reassure her that her psoriasis is very likely to resolve completely. It may take 4-6 months. I also recommend discussing with your doctor about seeing a dermatologist.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: I am scheduled for laparoscopic surgery for ileocolic resection due to Crohn’s disease. Diagnosed at age 40 with mild disease managed with pentasa and entocort for 14 years but now have strictures one of which is ten cm. Doctor is advising that I also begin remicade but is that before or after the surgery? Does Remicade have anything to do with existing strictures? Thanks I’d also like to know how the recovery is for this surgery.
A: It is likely that your disease progressed to stricture due to ineffective treatment of the Crohn’s disease. Pentasa is not approved in the management of small bowel Crohn’s disease and Entocort should only be used for < 3 months. There are several factors that go into decision making to start therapy after lleocolic resection and it shoulds like your physician has classified you as higher risk of progression/disease. They are likely suggesting you start Remicade after surgery as preventative measure. Remicade is effective drug to prevent post-operative Crohn’s disease recurrence and recurrent disease could lead to further strictures. I would suggest that you review the recovery with your surgery team, if you have laproscopic the recovery is shorter than if required open surgery. Please visit: https://www.crohnscolitisfoundation.org/what-is-crohns-disease/treatment/surgery
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Jami Kinnucan, MD
Assistant Professor
December 2021
Q: I was diagnosed with crohn's in 7/2020. I find that if I eat broccoli, cauliflower, winter squash, sweet potato, the consistency of my bowel movements changes. I'm just wondering if this is normal. Is it that my system can't handle the fiber in these vegetables? I have no problem with cooked stringbeans, zucchini, yellow squash or carrots.
A: We know that various foods can increase symptoms of gas, bloating and change bowel consistency. If you aren’t having any other symptoms than change in bowel consistency (assume you mean diarrhea) and you are tolerating this without dehydration it might just be the nature of your body’s interaction with these foods. Often times people can tolerate cooked vegetables better. It would be important to know if you have any stricturing of your intestine as raw uncooked vegetables can sometimes be problematic.
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Jami Kinnucan, MD
Assistant Professor
December 2021
Q: I am a 62 year old female diagnosed in Nov 2019 with Crohn's disease. Initial treatments included prednisone, Pentasa and then Remicade infusions in May 2020. Had a bowel resection in October 2020. In July 2021 had a reaction during Remicade infusion so my doctor started me on Stelara in August 2021. November labs have the highest Calprotectin level ever, and CT scan shows new strictures developing. How long does it take for Stelara to have an effect? Or is this a reaction to Stelara?
A: I am sorry to hear that you aren’t feeling well. Sounds like Remicade was working fairly well for you however it was complicated by an infusion reaction (which we know can happen but is rare). If you are having progression of your disease on the Stelara it might be that it is too soon in the treatment course or you are under medicated, what that means is that you might benefit from escalation of therapy, but this would need to be discussed with your treating provider. They could see if they can get approval for every 4 week dosing or repeat IV loading dose, and if no improvement within the next 2-3 months then consider going back to anti-TNF therapy class with Humira and strongly consider combination therapy with immunomodulator (azathioprine or methotrexate). If you are having significant symptoms now or they are concerned about severity of inflammation they can trial short course of steroid (budesonide vs. prednisone).
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Jami Kinnucan, MD
Assistant Professor
November 2021
Q: Hi, I am a 28 year old Crohn's patient dealing with ongoing fistulizing perianal complications over the years. I have tried just about every biological drug out there (besides cimzia). But the fistulas have never cleared up and just branch further more. This was initially caused by having a resection after having an ostomy for 7 years, and the answer was to put the ostomy back to divert path of stool away from the fistula tracts. However, 7 years have gone by and there's still constant drainage.
A: This is a tough situation that requires close multidisciplinary care with your colorectal surgeon and gastroenterologist. The first step is to assess the degree of activity of the perianal fistulas as well as the intestinal disease (ie how much Crohn’s disease activity is going on in the small bowel and colon). This would involve getting an MRI pelvis to really examine the perianal area for fistula activity and abscess (sometimes with an MR enterography to look at the small bowel for activity) and a colonoscopy. If there is still quite a bit of activity despite diverting the stool, then the reality is that you may need to have a completion colectomy with permanent ileostomy especially if you have been on so many medications without benefit. If you haven’t been referred to a major IBD center for a consultation with an IBD specialist and IBD colorectal surgeon, we would strongly recommend it as this is a complex case. It is important to advocate for additional opinions – if there is consensus across the board, then that is helpful for decision making, but sometimes a fresh set of eyes can evaluate the situation and potentially identify another option. However, in truth, a surgery does seem like it may be the safest, most effective approach – remember, surgery is not a failure, it is an important treatment to help regain quality of life, control inflammation, and decrease risks of treatments that are not working.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: How do you decide between a Ileostomy vs a colostomy? This will be permanent due to a complicated anal fissula that requires removal of the rectum. My left side of my large intestine has always been red and inflamed it has always been the same section but my right side has been healthy since I began medication for my Crohn's in 2009. The risk is that I would end up having another surgery in a couple of years to remove what is left.
A: The decision is usually based on extent, location and severity of your Crohn’s disease. If the majority of your colon is involved, then an ileostomy is typically performed due to issues related to inflammatory burden, colorectal cancer risk and blood supply/technical issues related to creating the ostomy. If a limited amount of your colon is involved (especially limited to the sigmoid colon or rectum, and the rest of your colon is normal as well as the small bowel, then a colostomy may be performed. This is a multidisciplinary decision based on careful review of your IBD history, medication use, body type, weight, and prior surgical histories. Make sure to consult with a colorectal surgeon who has expertise in IBD surgeries and, if there is uncertainty, sometimes it is helpful to get an additional opinion at a major IBD center.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: My 22 yr old son is a college student and takes Entyvio infusions for Crohns. I’m concerned and not finding thorough answers to whether or not he should be vaccinated for Covid. And if so, which vaccine is recommended. What are others doing in similar situation?
A: He should be vaccinated for COVID. Back in April 2021, the International Organization of IBD (which is a panel of international experts) said that we should vaccinate IBD patients with whatever vaccine we can first gain access to. All the 3 vaccines available in the US (Pfizer, Moderna and Johnson and Johnson) are fine in IBD patients. They all will need boosters as well. Of note, the response to the vaccine will be decreased by being on Entyvio, but this still confers your son a level of protection he would otherwise not have without the vaccine.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
November 2021
Q: I'm on mesalamine for crohn's. I've had polyps removed in the past. I battled uveitis the past year and my last colonoscopy showed 2 deep ulcers. One in the colon and a smaller one in the small intestine. I did not take the medication faithfully since I don't experience much pain. Would staying on mesalamine faithfully or at a higher dose help heal the ulcers? Would a bland diet help in the healing?
A: Mesalamines for Crohn’s have limited utility. The deep ulcers usually reach below the mucosa (the inner layer of the colon) but the mesalamines are solely mucosal agents. In my opinion, Crohn’s patients need biologics for optimal management. This is more important than a bland diet. I would stop the mesalamine and try a biologic to prevent uveitis recurrence and ideally heal the ulcers as well.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
October 2021
Q: How does one find the proper nutrition plan when you have Crohn’s & Hashimoto’s. Not only that but I have issues digesting meat, I’m gluten sensitive, lactose intolerant & I was first diagnosed w/ IBS-C (emphasis on C) I’ve gone in circles for 6 years trying to figure out the nutrition by myself & my brain is fried. I’ve also done the autoimmune protocol several times & now I’m here.
A: Nutrition therapy for people living with inflammatory bowel disease is not a “one size fits all” approach. What might work well for one individual might not work for another which is what can be quite frustrating for patients searching for a diet plan. Due to your underlying gluten sensitivity, IBS, and lactose intolerance, it might be helpful to focus on whole foods. Some Crohn’s disease patients have had success with whole food-based diets such as the Crohn’s disease exclusion diet. It models some of the components of the autoimmune protocol but is not as restrictive up front and serves as a maintenance versus elimination- based diet. The whole foods approach aims to reduce exposure to foods thought to cause intestinal inflammation, change the microbiome, alter the mucous layer in the gut, or change intestinal permeability. This diet includes fruits, vegetables, meats, complex and simple carbohydrates. If animal- based protein is difficult for you to tolerate, plant-based protein sources could serve as an alternative. This diet plan avoids gluten, gluten free baked goods, dairy, animal fats, processed meats, products containing emulsifiers, canned goods, and packaged products with an expiration date. To promote bowel regularity in the setting of IBS-C, it might be beneficial to discuss adding in fiber, additional hydration strategies, or probiotic supplementation with your medical team. Finding an outpatient dietitian specializing in IBD care could also serve as a helpful resource for tolerance follow up.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
October 2021
Q: I have Crohn's disease and have already had two surgeries. I am currently taking Stelara every 6 weeks which is not strong enough. So my doctor has added Budesonide. I am still having problems even though I take both these medications and eat basically grill chicken and salads. I can not figure out what options I have when it comes to what to eat. I am getting burnt out on grilled chicken. Can you help with some different food options?
A: Some general recommendations to help include seeing a dietitian with expertise in IBD, getting tested for vitamin/mineral deficiencies and discussing ways to supplement with your healthcare team, drinking plenty of fluids, keeping a food journal to pinpoint problem food items, and trying to slowly increase dietary variety. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked vegetables/fruit, high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Some potential foods to include during a flare include: diluted juices, smoothies, pureed vegetable soups, applesauce, canned fruit without added sugar, banana, pumpkin, oatmeal, cream of wheat, plain chicken, turkey, or fish, cooked eggs or egg substitute, mashed potatoes, rice, or noodles, white bread, and oral nutrition supplements. In general, eating smaller, more frequent meals may also be helpful.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: Hello, I was just in the hospital a few weeks ago. The doctor diagnosed me with Colitis and my questions is "What diet would you recommend?". I am writing down what I eat, but it's minimal since now I'm afraid to eat. I cut out meats, coffee, hot sauce and alcohol. What vegetables are ok to consume and which do I avoid? I appreciate any feedback.
A: Deciding what to eat and recommending what to eat can be challenging for those with IBD. Since everyone’s IBD is different, there is no one single diet or eating plan that will work for everyone with Crohn’s disease or ulcerative colitis. Dietary recommendations must be tailored just for you – depending on what part of your intestine is affected, what symptoms you have (such as, diarrhea or constipation), the status of your disease, whether you are in remission or having a flare, as well as the presence of any nutrient, vitamin, or mineral deficiencies which your team can assess. Seeing a dietitian with expertise in IBD can also help with this assessment. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked, raw vegetables/fruit (especially those with tough outer skins or seeds), high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Try slowly introducing new food items, even one at a time and eating small, frequent portions (i.e. 5-6 smaller portions if 3 big meals per day is difficult). Keeping a food log like you describe of what you eat and how you feel can be a helpful way to figure out what diet might work best for you as the best diet is one that meets your nutritional needs, while helping you better manage your IBD symptoms.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: I am recently diagnosed with UC but have had flare ups for the past year. I had a gastric bypass 7 months ago and did not have any UC symptoms until 5 months in and am in a nasty flare now. I have been researching different diets (SCD and Low FODMAP) but there are several parts that contradict my weight loss surgery diet. How do I find the right diet for me and are there online resources available to help? Is there anyone that specializes is both WLS and UC?
A: The low FODMAP focuses on reducing FODMAP carbohydrates which can be poorly absorbed in the small intestine and thus may be broken down and fermented by your microbiome producing excess fluid and gas. This is actually a diet that has been primarily studied in IBS – irritable bowel – which is different than IBD. The Specific Carbohydrate Diet has been popular among IBD patients due to growing research following the book “Breaking the Viscous Cycle” as well as its structured approach. Researchers from the DINE-CD study compared the effectiveness of the SCD against the Mediterranean diet and found statistically similar rates of symptomatic remission in Crohn’s Disease patients. The Mediterranean diet may be easier to follow for some and can be less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients. The post-operative bariatric maintenance diet (phase IV) aligns with most of the Mediterranean diet principles such as recommendations of lean meat, poultry, pork, and fish, low fat dairy products, low fat starches and whole grains, and cooked vegetables and fruits. If you can't tolerate 3 meals daily, 5-6 smaller meals daily may be better tolerated as well as separating liquid and solid food intake. Because following a therapeutic diet, experiencing active IBD, and having a surgical history of RYGB puts you at increased risk for vitamin/mineral deficiencies, it’s important to stay in close contact with your healthcare team to make sure you remain nutritionally healthy. The Crohn’s and Colitis Foundation has a Diet & Nutrition Page that can be a helpful resource for patients to stay up to date. A registered, licensed dietitian preferably with experience in bariatric surgery and inflammatory bowel disease should be able to tailor nutritional recommendations specifically for you and your needs.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
August 2021
Q: I am a 71 year old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and also the best probiotic? I am diabetic. Thanks
A: I am sorry to hear about this new diagnosis. It is important that you work with your health care team to manage your disease. I recommend that all patients take multivitamin if you are 71 recommend Centrum Silver as a good option as long as approved by your treating physician. We don’t typically recommend probiotics as treatment of disease with ulcerative colitis (limited evidence). The best thing you can do for your gut microbiome (the bacteria that live in your gut) is to eat a well balanced diet (Mediterranean diet) high in fresh fruits and vegetables and lean proteins and low in processed foods, sugar.
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Jami Kinnucan, MD
Assistant Professor
August 2021
Q: My son has Crohns has had it 10 years he is 17 years old. He has been on Humira but it didn't work for him. Has just started Stelara. He has been having like a mucus discharge for several months. His doctor has done a colonoscopy and nothing showed on that other than small Crohns ulcers but was doctor said they wouldn't be causing that drainage. Wondering if there is anything you all have heard even diet changes that could help this.
A: If there is discharge in his underwear he may need an MRI of the pelvis to make sure he doesn’t have a perirectal fistula. If the mucus is in the stool, that could be a number of things including inflammation – I would start with a fecal calprotectin level, and if this is elevated then the ulcers are causing the mucus. If he just started Stelara I would wait max 16 weeks after starting to see an improvement, and if I don’t see one I might see if he needs to switch again – not everyone responds to every biologic and the rate of response decreases after you failed one.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I am scheduled to have a laparoscopic small bowel resection to treat a fibrotic stricture. I've been dealing with constipation, bloating, sometimes severe abdominal cramping. I'm curious, assuming the surgery goes well, how much better should I expect to feel once I recover?
A: If your stricture is the cause to your symptoms then after the recovery period you should have improvement in those symptoms. Depending how much small bowel they have to resect and whether it involves the ileocecal valve and they have to resect that as well. Some people after resection will have increasing stool frequency (diarrhea) which is thought to be due to bile acid malabsorption and can be treated with bile acid sequestrant therapy.
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Jami Kinnucan, MD
Assistant Professor
August 2021
Q: I was diagnosed with mild to severe Crohns in the small bowel in 2004. I have been on Humira since 2005 but lately it seems like it isn't controlling the symptoms like it was at first. Often I am having symptoms the day after injecting the Humira. Is is possible that a medication stopped working, requiring a change in meds?
A: Yes, this is entirely possible. There are experts who think the average lifespan of a biologic in most patients is 2-3 years, so this is already very long on Humira. Your doctor should check your Humira level and esp your antibodies to Humira, as it is possible that you developed these while taking this medication. If this is the case, we can occ increase the Humira dose but more often we end up switching the drug altogether. The good news is that there are more options since 2004 and the injections are by and large less frequent.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I have been on biologics for over 20 years, mostly Remicade. I have suffered from allergies (environmental) my whole life. Today I just had allergy tests and tested negative for everything. This is the 2nd time this has happened in the past 20 years, even though I know I have allergies. Could this be a side effect of a biologic? I suffer from chronic sinus issues and infections, which are very common with biologics.
A: Treatment with Remicade isn’t associated with increase in allergies, or at least hasn’t been reported. I would work closely with allergist regarding what could be causing your allergy symptoms (allergic rhinitis is a common cause). However chronic sinusitis should be evaluated with ENT and consider imaging as this could be due to sinus polyps/sinus obstruction and can be treated. Anti-TNF therapies have been associated with rare risk for chronic sinusitis. We have to weigh the risks and benefits of therapy, sometimes if patients have elevated Remicade levels we can reduce the dosing/frequency and improve some of these rare complications of therapy.
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Jami Kinnucan, MD
Assistant Professor
July 2021
Q: I’ve been reading a book Plant Paradox for patients with UC? Is a plant-based diet beneficial for ulcerative colitis patients? What are the pros and cons?
A: Most recent scientific research has focused on the semi-vegetarian diet in mostly Crohn’s disease. A small study out of Japan suggested that patients who followed a semi-vegetarian diet were less likely to experience disease relapse than those who were eating a more meat-heavy diet. There has been lesser research done on semi-vegetarian or plant-based diets in UC. There is limited data suggesting that there might be benefits to following a plant-based diet in combination with medical therapy in cases of mild UC. It is important to note that plant-based diets are traditionally higher fiber. Since fiber is a primary fuel source for colon cells and in turn the gut microbiome, eating a fiber rich diet can have a number of health benefits. A plant-based diet can normalize bowel movements especially in constipated patients and help normalize stool in patients with diarrhea. However, tolerance to fiber sources may vary from patient to patient especially in cases of active disease. Those following a strict plant-based diet, especially vegans, may be at risk for additional nutritional deficiencies such as vitamin B12, vitamin D, calcium, and iron.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I am a 71-year-old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and the best probiotic? I am also diabetic.
A: While there is no one size fits all approach to IBD nutrition and vitamin/mineral supplementation, having UC does put patients at risk for certain nutrition deficiencies. Some of the more common nutrient deficiencies include folate, magnesium, zinc, iron, potassium, Vitamin D, and calcium. It is very important that before taking any vitamin or dietary supplements, that you first discuss it with your doctor or your dietitian. While most patients may benefit from taking a daily multivitamin/mineral supplement, supplementation needs vary person to person depending on medical and surgical histories, medications, and nutritional status. Identifying the best brand of vitamins and supplements is challenging because the Food and Drug Administration (FDA) does not regulate the vitamin and supplement industry, so I generally recommend products that have been USP verified and discussed with your medical team. There are numerous live micro-organisms that may improve the balance of good versus bad bacteria in IBD including E. Coli strain Nissle 1917, Lactobacillus, Bifidobacterium longum, and VSL#3. However, it’s important to talk to your doctor before starting probiotics, especially if you are a young child, older adult, or have a compromised immune system. Dietary sources of probiotics include yogurt, kefir, miso, and tempeh.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I have microscopic colitis and struggle with frequent diarrhea. I use OTC anti-diarrhea medications as needed. I want to take a more natural approach to controlling diarrhea. What are some foods or complementary therapies that can help control diarrhea?
A: It’s important to drink plenty of fluids to prevent dehydration such as broths/bouillon, fruit juices (diluted as needed), diluted Gatorade or G2, Pedialyte (or other oral rehydration solutions), ginger ale, and water/coconut water. Try limiting caffeinated and/or carbonated beverages, if gas or cramps occur. Try avoiding sugar alcohol (mannitol, sorbitol) containing beverages or foods if symptoms worsen or continue. Certain soluble fibers can help with diarrhea by absorbing excess water in the gut. This can be found in both soluble fiber supplements (such as psyllium) and via dietary sources. These starchy foods include items such as bananas, rice, applesauce, potatoes, white toast, noodles, and oatmeal. Avoiding insoluble fibers such as the skins, seeds, and stringy fibers of unpeeled, raw fruits and vegetables and gradually resuming consumption of higher fiber foods, once the diarrhea subsides may prove helpful. Some patients may have other underlying intolerances (such as to gluten or dairy) that could also contribute to looser stooling. It may be helpful to keep a food log to pinpoint trigger foods and eating smaller, more frequent portions throughout the day. For more tailored nutritional recommendations, ask your healthcare team about getting connected with a registered dietitian.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: The results of the DINE study indicated that both the Mediterranean Diet and SCD diets can induce remission and improve symptoms in CD patients. How do I know which diet to try? Is there a guide on how to get started with making dietary changes? Finally, will these changes need to be permanent of just when I have a flare up?
A: After six weeks the DINE-CD study showed that 43.5% of patients following a Mediterranean style diet and 46.5% of patients following the Specific Carbohydrate Diet™ achieved symptomatic remission in Crohn’s disease patients with prior mild-to-moderate symptoms on stable doses of medications. Given these similar results, it’s important to note the differences between the Mediterranean diet and Specific Carbohydrate diet. While the Specific Carbohydrate Diet has typically been popular among IBD patients due to prior research (and the book Breaking the Viscous Cycle) as well as its structured approach, public health experts often recommend a Mediterranean style diet because it has a variety of other health benefits. Researchers from the DINE-CD study also note that the Mediterranean diet is easier to follow for most and less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients with CD with mild to moderate symptoms. However, there is no universal guide that will work for everyone with IBD as individual tolerance to items such as fruits, vegetables, and other fiber sources may vary and specifics like surgical/medical history, access to food, and nutritional/functional status should be accounted for. While there is no specific instruction set on how to get started, working with a trained professional such as a registered dietitian can help you put these specific dietary changes into place as well as make tailored nutritional recommendations. As of now, the DINE-CD study recommends these diets as a long-term approach to manage symptoms of IBD.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2021
Q: Is poor circulation a side effect of ulcerative colitis? My legs and fingers numb or in pain most of the time and now my left leg has lost some mobility. I don't see much online about it. Thank you so much for any information you can provide!
A: We can see patients that also have a diagnosis of Raynaud’s which can cause issues with circulation especially in fingers and toes. I would be more concerned about the lack of mobility in your left leg which could be a sign of something more serious like a stroke. I would recommend that you review with your primary care physician and treating ulcerative colitis provider.
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Jami Kinnucan, MD
Assistant Professor
June 2021
Q: I am getting ready to have another colonoscopy. I know that the split prep is typical. However, I am not willing to wake up in the middle of the night. I have two young children and the idea of being up more than I need to in the middle of the night is enough to make me cancel my colonoscopy (since I have no way to catch up on rest). I know that there are alternate schedules since I have done them in the past. What are some prep schedules that would not require me to be up at night?
A: Studies have shown that the split prep is more effective and providers a cleaner colon. The challenge is that almost any prep will have you waking up at night due to starting at 5pm and the colon getting moving early evening and likely throughout the evening. I think if you have concerns about your prep and timing, work with your ordering provider to see if you can arrange alternative schedule. Ie last colonoscopy of the day and doing alternative prep that still work meet requirements for NPO status.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
June 2021
Q: To get a UC flare under control, my doctor prescribed me prednisone, in a stronger and longer dosage than I've taken before. I was on 40 mg for 3 weeks, and through the tapering process am now at 30 mg. Two weeks ago at the 35 dose level, I started feeling funky -- very foggy and lightheaded, like I could not focus on anything. I still am experiencing this, with a bit of head pressure. Is this normal and due to the steroids? Is there anything I can do to mitigate these side effects?
A: Prednisone/steroids can make some people feel different/off. However if you are having any specific localizing symptoms like a headache or pressure I would recommend evaluation with a medical provider to do an examination and exclude other causes to your symptoms. It is challenging as there is really no way to mitigate the effects of steroids other than decreasing the dose or not taking them. Another consideration could be using a more gut selective steroid like budesonide-MMX (Uceris) or budesonide (Entocort)
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Karlee Ausk, MD
associate director of the Swedish IBD Center
June 2021
Q: Hi, I'm 13 years old and was diagnosed recently with Ulcerative Colitis. When I flare, my hands get super dry, scaly, bloody, and painful. It only happens when my stomach is bad. Is this related to the illness?
A: It is challenging to answer this based on what you are describing as rashes are best visualized. However that being said skin manifestations of inflammatory bowel disease are common. When this happens I would recommend you send photo to your GI provider who might consider a dermatology referral for further evaluation.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
June 2021
Q: I have had Crohn’s disease since 1993 and a few years ago after my second bowel resection, my GI doctor started me on Entyvio infusions and I have achieved remission which I am so grateful. My issue is with my frequent and urgent diarrhea/watery bowels and my work place. Imodium, diet changes and specialized medication have been used without success. The most successful treatment was a two week antibiotic Rx but nothing since then. I am miserable at work and in need of advice.
A: Congrats on achieving remission! I assume when you say remission they have either done stool testing, imaging with CT or MRI or a colonoscopy/endoscopy. If that is the case and you do not have any active inflammation then I suspect that your diarrhea might be due to a condition called bile acid malabsorption. Bile acids (made in the liver and stored in the gallbladder) are released when you eat and are typically reabsorbed in the terminal ileum (where I suspect you have had surgery several times). If you are missing your terminal ileum or a portion of it you get bile acid malabsorption which leads to diarrhea, bloating and cramping. We have medications called bile acid binders that can improve these symptoms dramatically, you should discuss this with your primary GI provider. Another possible cause of diarrhea that can respond to antibiotics would be small intestinal bacterial overgrowth and that typically responds well to antibiotics.
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Jami Kinnucan, MD
Assistant Professor
May 2021
Q: I had my second COVID 19 vaccine 2 days ago. I have been very frightened of contracting COVID since losing a 31-y-old cousin to the disease and have not been getting together with family/friends. At my vaccine appointment, I was told that it may take me longer to get full efficacy of the vaccine than other people because I have Crohn’s and take Stelara, which suppresses my immune system. I wasn’t told how much longer to wait to get together with others. How much longer should I wait?
A: There have been initial studies concerned for the possibility of lower antibodies titers after the first vaccine dose in patients who are immunocompromised, but we do not know if this applies specifically to patients with IBD on biologics, and whether that is the case after the second dose. A recent small study, however, found that IBD patients on medical therapy mount the same response as patients without IBD after the Covid Vaccine. So at this point we do not have evidence that patients with IBD on Stelara or other biologic drugs will have a delay in immunity or difference in immunity. Our evidence suggests that after your second dose of vaccine, you can function as if you were a patient who has been vaccinated in the general population. No need to wait any longer than any other vaccinated people.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
May 2021
Q: I am a 52-year-old male who has been suffering from IBD for more than two years. I have been taking mesalamine since then and also have been taking steroid (prednisone) almost fifty percent of the time to control flareup. Recently I came across some research papers that showed direct link between Vitamin D3 and IBD. My current vitamin D level is borderline at 30 nmol/L. Do you think increasing the level to 75 by taking high dosage of vitamin D3 would help to curb the auto immune disease?
A: While there is some data that Vitamin D3 may be associated with IBD, there is not yet strong data that increasing your vitamin D to high level you have mentioned will be beneficial. The goal of IBD treatment is to be in a stable, steroid free remission. If you are requiring steroids 50% of the time, this is a sign that the medication you are taking is not working, and either the dose may need to be adjusted, or a new medication is needed. Steroids are the medications associated with the most risks and side effects in IBD treatment, and should be avoided as much as possible.
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Sushila Dalal, MD
Assistant Professor of Medicine
May 2021
Q: What antibiotics are best for IBD patients for conditions like sinus infections. Are there particular antibiotics that should be avoided by IBD patients? Should probiotics be taken when you are on an antibiotic?
A: Antibiotics can cause diarrhea by disrupting the normal bacterial community in the intestine. One of the most common ways that antibiotics can cause diarrhea is through increasing susceptibility to C difficile infection. The classes of antibiotics that have the highest association with C diff infection risk are fluroquinolones, Clindamycin, Penicillins, Cephalosporins, and Carbapenems. There is low quality evidence for probiotics. There may be some benefit to taking probiotics such as Saccharyces boulardii, the combination of L acidophilus and L casei, the combination of L acidophilus, L delbrueckii bulgaricus, and B bifidum, or the combination of L acidophilus, L delbrueckii bulgaricus, B bifidum, and S salivarius thermophilus.
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Sushila Dalal, MD
Assistant Professor of Medicine
May 2021
Q: I'm 30 and I was diagnosed with Crohn's disease last year. I've been suffering new symptoms between infusions. Is it normal for the arthritis associated with Crohn's to be so excruciating? I have trouble gripping a doorknob at times. Also, is nerve hypersensitivity also associated with Crohn's? I just need to know what issues to take to my gastroenterologist and what to discuss with other providers.
A: Unfortunately, arthritis is associated with Crohn’s disease and ulcerative colitis, and can be quite painful. New arthritis symptoms should definitely be discussed with your provider so that she or he can determine whether the symptoms are due to ongoing bowel inflammation, medication side effects, or potentially simply share the same underlying genetic risk as IBD. Some IBD medications are better than others at treating arthritis, and medication adjustments may be needed, or medications may need to be added in order to get the arthritis under control. New nerve symptoms should also be discussed with your IBD provider. Nerve symptoms may be related to vitamin deficiencies that can occur with IBD, or possible medication side effects. It is also best to bring up any new symptoms so that your provider can you let you know if he or she thinks that they may be related to your underlying condition or treatment or not.
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Sushila Dalal, MD
Assistant Professor of Medicine
May 2021
Q: I am 36 and was recently diagnosed with UC. I take medication for chronic pain syndrome, will this affect my UC ? If so, should I discuss with my gastroenterologist when I get my new medication for UC? And how should I go about this discussion?
A: Discussing any medications that you are taking, whether prescribed, over the counter, or supplements is important in order to make sure there are no interactions with your other medications and that the medications that you are on do not affect your IBD symptoms.
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Sushila Dalal, MD
Assistant Professor of Medicine
April 2021
Q: I am 21 years old and have been diagnosed with Crohn’s this last month. I am really leaning more towards not taking any medication. Instead taking vitamins and supplements along with cannabis. I have found that helps the most. Is it necessary to take prescription medication, if I have found a way to be in remission?
A: Many patients are anxious about taking medications in the setting of a new diagnosis. A small select group of patients with very mild Crohn’s disease do not need chronic medication, but the of patients majority do. In addition, if Crohn’s is not controlled many patients on no medications known to be effective will go on to eventually have significant complications from their disease and a lower quality of life long term. Unfortunately vitamins, supplements do not have evidence of treating Crohn’s and there still not enough data to determine the impact of Cannabis positive or negative. You may be effectively treating your symptoms but the concern is that your underlying disease will progress if it is not addressed with medications or possibly well timed surgery. The idea is to intervene on your disease, prior to the disease progressing. Please discuss with your gastroenterologist if there are other medical therapies and treatment strategies that could benefit you. In the meantime, good quality sleep, a balanced diet low in processed food, addressing anxiety and depression if present, and even adjunctive measures such as mindful meditation as adjuncts to improve your quality of care can be considered as you and your physician make decisions on treatment.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I have been on Remicade/Inflectra for 19 years. I receive infusions every 8 weeks along with blood draws as necessary. Because of so many years of this (and maybe because of my age - 64), my veins can be difficult to access. I only have 2 that the clinic seems to be able to use. I am considering a port. My GI is okay with it but I am still on the fence. What are the pros and cons of a port?
A: Pros of a port would be easy access for your infusion nurses, less pain as well less anxiety for you every time you have to think of getting a medication that has kept you well for 19 years. You would also be able to get your labs drawn through the port. Some patients also like having both arms free during treatment. It also would help preserve the veins you do have. Cons would include the risk of infection, which could be severe. This is my greatest concern for patients. Ports also do need upkeep and patients who are vigilant about monitoring for infection or complications: they can malfunction and are susceptible to blood clots and may require replacement. Some patients still get soreness around the site after treatments, not all nurses can access ports, and the port is visible and juts out of the skin, and can be bumped when patients are particularly active. This is a personal decision to be made with joint decision making with your physician. In the meantime, make sure you are particularly well hydrated before you arrive for your infusions, not just the morning of but the whole day before. Identify nurses who have been successful in accessing your veins in the past.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I was diagnosed with a mild case of Crohns 6 months ago. My doctor tells me that biologics are the only treatment to achieve long-term remission. I'm very concerned about having Stelara in my body for the rest of my life. I'm told that this is the treatment for me. Are there are any other non-biologic drugs that could help me achieve remission, or if dietary changes can achieve the same effect.
A: The details of your case are best known by your primary gastroenterologist. There are various types of medications for Crohn’s. Biologics, for patients who have mild to moderate disease and depending on their risk for progression, in terms of getting patients into remission and keeping them there have the strongest data and best safety records compared to other available non-biologic medications. What I tell all my patients is that you will be on Stelara “Forever For Today” – what I mean by that is that if the medication works we would keep you on it for as long as it works. If the medication does not work or stops working, we do not keep you on it forever. If a new treatment arrives which would be better suited to you, you would be switch you. In short, from the information we have at this time we would hope and wish that we can keep you on this medication that is very effective with a great safety record. The concern about having a medication for a lifetime is understandable. However, at this time there is no cure for Crohn’s and we know that the majority of patients need to be on lifelong medication. There is a dysregulation in your immune system pertaining to your gut, and unfortunately we need to use medications to help regulate that for you. While some dietary interventions have helped patients (less process food diets, Mediterranean type diets), we do not yet have evidence that diet alone can control infection in the long term.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I have been on Entyvio for a year now and have experienced total remission from my ulcerative colitis symptoms. However, since starting the medication I have had nonstop bloating. I have tried countless treatments, including medication, low fodmap diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering that the bloating started around the time I started my infusions, could this be a side effect of the Entyvio?
A: Bloating is not a recognized side effect of Entyvio, though every patient is different and every patient’s response to a medication may be unique. It sounds as if you have explored several causes of bloating other than the medication and not found relief. There may be many causes of bloating, including IBS to which patients with IBD are at risk. Celiac disease, lactose intolerance, small bowel bacterial overgrowth and medications are all possible causes. Is it possible that you changed your dietary habits since feeling better from ulcerative colitis standpoint? Has your small bowel been evaluated? Hormonal changes can also impact bloating. If not causes are found, biofeedback can be considered and has been shown to decrease distension.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I am currently on a biologic (infliximab)regimen for UC. I have the second COVID vaccine shot coming up soon. Two days after the vaccine, I am scheduled for my biologic infusion. Is this safe? Will the vaccine so closely administered adversely affect the effectiveness of either? Should I postpone my infusion?
A: These are all good questions. There are no consensus recommendations on spacing our the COVID vaccine with infusions. I advise my patients to leave at least 3 days between the vaccine and an infusion to better decipher if one or the other is causing new symptoms. Three days is generally enough time for any symptoms from the vaccine to resolve. There is nothing to indicate that postponing the infliximab infusion will be helpful for the vaccine. In fact, it may put you at risk for a flare of your UC. We do not yet know if medications like infliximab blunt the effects of the vaccine but this is an active area of study. I advise my patients to get the vaccine and continue their therapies as scheduled until more information is available
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication (ustekinumab). I had a small bowel resection in 2016. I am having trouble keeping my vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. I’m looking for ways to get extra vitamins into my diet. Can dietary supplement drinks help to boost my vitamin levels?
A: Thanks for the question. Before adding additional supplements to your regimen, it may not be a bad idea to stay on high dose Vitamin D and B12 shots for 3-6 months and then rechecking these vitamin levels again. If you have already done this and your levels are still low, you may need to be on higher doses of Vitamin D and other causes of B12 deficiency should be evaluated.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have recently been diagnosed with small bowel Cohn's. A second colonoscopy (after CT) revealed chronic active ileitis. There is inflammation also narrowing of the small intestine at that area. The Dr recommends Humira but after reading results of others, I am afraid of it. I am considering Entyvio over Humira because I read that it has a higher safety profile. How do I decide on medication?
A: The decision on the “right medication” is a very common scenario. The best therapy for a specific person with Crohn’s disease is going to be based on several different factors. Therefore, it may be different for you versus someone else with Crohn’s disease. I would discuss the risks and benefits of each of the therapies being considered with your gastroenterologist and together, determine the best option for you.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I am a 60-year-old woman diagnosed with UC 5 months ago. I initially reacted very well to oral mesalamine; all my symptoms stopped. Now I'm having a flare. Stool tests showed inflammation but no infection. Now my doc wants me to get another colonoscopy. He didn't give me a very good answer as to why -- and I don't want to get one if I don't have to (prep very hard for me, vomiting, etc.). Do I really need a 2nd colonoscopy within 6 months or are there other test that provide needed information?
A: There are multiple appropriate reasons to do a colonoscopy in a patient with UC. One of those scenarios is to evaluate symptoms, particularly if they have changed from before. For you, it sounds like you may have had mild symptoms that went into remission on mesalamine initially but now are having symptoms despite the use of mesalamine. It is not unreasonable to repeat a colonoscopy at this point. Having said that, it sounds like you had difficulty prepping for the previous colonoscopy. There are other noninvasive markers like stool calprotectin and stool lactoferrin that can also measure inflammation in the colon with a stool test. Additionally, if your disease involves the left side of the colon, a sigmoidoscopy, which does not require a traditional prep, may be a viable option. I would encourage you to discuss these options along with a colonoscopy with your gastroenterologist to determine the best decision for you.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for almost 4 years. I have had ongoing burning mouth problems for over a year with recently has accompanied 4 months of thrush with a peeling palate. Could this be a reaction to vedolizumab or to Crohn’s?
A: Thrush is not something we typically see with vedolizumab or Crohn’s disease. I would discuss other causes for the thrush with your PCP.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for a year now and have experienced total remission from my ulcerative colitis symptoms. However, since starting the medication I have had nonstop bloating. I have tried countless treatments, including medication, low fodmap diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering that the bloating started around the time I started my infusions, could this be a side effect of the medication?
A: Bloating can be a frustrating symptom. It sounds like you have gone through quite a few different treatments for it as well. Bloating is not something we typically see with vedolizumab. It may be time to sit down with your gastroenterologist and examine other causes for your bloating.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2021
Q: I am 19 and have ulcerative Colitis. I tend to use toilet 2-3 times a day and don't have diarrhea. I do get blood in my stool though, not a lot but some streaks of blood on the solid stool. I also experience slight pain whenever my abdomen is bloated. I've been prescribed Mesacol suppositories for 4 weeks and I take Mesacol 3.6 grams every day. How can I tell if I am in remission or a flare-up?
A: I think the simplest way is to have your doctor check your fecal calprotectin. It’s a breakdown product of white blood cells and it SHOULD NOT be found in stool. If it’s present in your stool over a threshold value, odds are you are flaring. If you want to figure it out on your own, it’s harder. Is your weight stable? If it’s dropping with no dieting, maybe you’re flaring. Is your energy level good? If you are napping during the day or going to bed at 9pm, maybe you’re flaring. Occasional blood in the stool is not normal, but might be your baseline if you have mild UC affecting the rectum (proctitis). If that is the case, you are on the correct medication regimen. It is possible that the disease is more extensive and the calprotectin would be good place to start seeing if that is the case.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I get Remicade infusions every 8 weeks for Crohn's. I will soon be eligible to get a COVID 19 vaccination. I need to know whether it is necessary to time the shot around my Remicade. I previously thought vaccinations had to be at least 2 weeks before or after Remicade, but I recently read that this is not necessary. I am anxious to get the vaccine and am hoping for as little delay as possible.
A: I have been telling my patients to take the COVID vaccine whenever they can get it, irrespective of where they are in the infusion cycle. This is because there is no data on taking the vaccine on immunosuppression and the vaccine availability is limited. My theory on this is that there is at all times a minimum of Remicade in your body, which slightly decreases your body’s ability to develop antibodies to COVID. However, there is no data that more Remicade inhibits the antibody rate more.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with Crohn’s 30 years ago and had a bowel resection. I have not been on medication for 27 years. I just watch what I eat. I’m feeling good except I get bowel obstructions a few times a year which is due to a stricture at the resection site. I am interested in trying an endoscopic balloon dilation, but my GI doctor will not give me any options except taking a biologic. Where can I get info on this and see if I would be a candidate?
A: I think you are right, this stricture is unlikely to respond to biologics. It’s most likely fibrotic. You can check by seeing if you have any elevated inflammatory markers (CRP, ESR, calprotectin). If they are all normal, which based on what you are describing they are likely to be, the biologics don’t have a role. Regarding dilation, the dogma is that if the stricture is less than 5 cm, it’s amenable to balloon dilation. If it’s greater, you might need surgery. The IBD Help Center might be able to direct you to GI doctors who are versed in the literature and have dilation capabilities in their office.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with mild to moderate Ulcerative Colitis a year and 6 months ago. I have been taking 1200 mg of mesalamine with good results but lately I had been having more frequent bowl movements and with what felt like stomach spasms. I went to my GI who ordered bloodwork along with stool and urine tests and the results were all normal. He prescribed digestive enzymes to take with along with the other med and the stomach spasms have stopped. Are these in common use with UC?
A: Nope, digestive enzymes (I assume you mean pancreatic enzymes?) are not common. You are likely underdosed on the mesalamine, the maintenance dose is more than 2,000 mg mesalamine a day and the flare dose is more than 4,000 mg a day.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: Six months ago I had Covid-19 and now have the antibodies. My UC is in remission and I take mesalamine for it. I was previously on 6mp until I contracted Covid and then stopped. Is it now safe for me to get the COVID vaccine or should I wait until more information is available about the effects on individuals with auto-immune disease or until I no longer have antibodies?
A: It is safe to get the vaccine. I am telling even people on dual immunosuppression to take it. You are basically on no immune medication, so you are like the general population that the vaccine trials were done on, except for your IBD which is in remission. We don’t know how long the infection antibodies will last, so doctors in the hospital who had COVID are still taking the vaccine, because we believe it’ll protect them from a bad infection.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I had a colectomy in 2015 and have j pouch. I’ve been battling chronic pouchitis for about three years as have done multiple treatments of Cipro & Metronidazole but have major side effects. I also tried probiotics. Are there any new treatments for pouchitis?
A: Pouchitis is a bear. I don’t have to tell you. Sometimes, all you can do is redo the pouch. There are national leaders in redo pouch surgery. Contact the IBD Help Center for info on health care providers (info@crohnscolitisfoundation.org).
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2021
Q: I am 21 year old gay man. I’ve had ulcerative colitis for about a year now. It has been very hard on my mental health, particularly the sex aspect of my life. It feels like I’ll never be able to do the “back door” part of being intimate with someone. Will I ever be able to?
A: With full mucosal healing in the rectum and no urgency, bleeding or perianal fistulas or fissures, sexual activity is possible. I recommend discussing your sexual health as a goal of your treatment with your gastroenterologist and continuing to adjust your treatment to achieve healing of your colon. Also, getting appropriate psychological counseling is a great addition to your care.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I was diagnosed with Microscopic Lymphocytic Colitis in April 2018. It is like Budesonide works well if I stay on it. My GI doctor's keep moving me on and off different treatments and none of them seem to work. Is MLC an IBD? Is MLC an autoimmune disease? Is there a standard treatment for MLC and where can I get more information on this condition?
A: Budesonide is a very effective treatment for microscopic colitis. Microscopic colitis has 2 subtypes, collagenous and lymphocytic colitis. Yes, this is a type of inflammatory bowel disease but generally has a good prognosis in that it does not increase colon cancer risk like ulcerative colitis can. The cause of microscopic colitis is unknown, but the immune system is definitely involved ast is is an inflammatory condition. Some microscopic colitis can be triggered by certain medications (like NSAIDS, acid suppressants, antidepressants), so I recommend a thorough review of your medication list with your GI physician. Budesonide is the most effective treatment for microscopic colitis, even though it can also be treated with cholestyramine and bismuth. If there is no response to budesonide, other conditions/problems should be considered and a work-up for other causes such as food intolerances and celiac disease initiated. For certain refractory cases of microscopic colitis, the use of medications normally used for Crohn’s and ulcerative colitis like biologic therapies and immunomodulators may be needed. Some resources for reading: https://gastro.org/guidelines/liver-diseases/the-medical-management-of-microscopic-colitis/ https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/diagnosis-treatment/drc-20351483
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 57-year-old female diagnosed with Crohn's November 2014. I take Humira weekly injections. I suffer from anal bleeding and horrific burning in my belly, four out of five days a week. Can these symptoms be side effects of the disease, the medication or something else? Is there something that can be done to eliminate these side effects?
A: Rectal bleeding and burning in the abdomen are not side effects of the medication humira itself, however, they could be a flare of Crohn’s disease itself or a complication of Crohn’s (such as a stricture, partial bowel obstruction, abscess). The symptoms need to be evaluated with endoscopy/colonoscopy or imaging studies. They could mean that the humira is not working well for your Crohn’s or that your medication or treatment needs to be adjusted.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I’m currently on stelara every 8 weeks which is working well for me, however I am also 19 weeks pregnant. My next injection will be when I’m 22 weeks which is fine, but the following will be when I’m 30 weeks and in the third trimester, is it still safe to take this injection at 30 weeks and then stop treatment? I may be induced at 39 weeks so would one at 38 weeks would be out of the question?
A: Keeping the inflammatory bowel disease under control is the most important goal in pregnancy. It is safe to take the injection at 30 weeks, but waiting one week to take the 38-week dose seems reasonable given that it’s possibly very close to your delivery induction date. I would recommend taking that dose immediately after delivery. That said, if your IBD is active, or you tend to flare easily, the dose does not have to be held or changed. As always, involving your GI and OB physicians is key as they are familiar with the details /severity of your IBD.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I have recently been diagnosed with Crohn's and have started Humira. I know that it will take several weeks to see any changes. In the meantime, I have had a flare-up with symptoms lasting more than 7 days. I don't have a lot of diarrhea; however, I do get a lot of burning and 'gurgling' (sounds like a coffee pot percolating) in my stomach. I take Pepcid, which makes the burning feel better. Is it okay to take an antacid with Humira? What is the gurgling?
A: Yes, it is okay to take antacids with humira. Gurgling is a very nonspecific symptom of feeling food or gas go through your GI tract It can be associated with inflammation, narrowing of the intestine, food intolerances like lactose intolerance, bacterial overgrowth or gut sensitivity Please contact your gastroenterology physician becasue as a new humira patient, you may need to take a short course of a steroid (like prednisone or budesonide) if the symptoms are bothersome while the humira takes effect.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 39-year old male and was diagnosed 6 years ago with left sided ulcerative colitis. The affected area remains at the last 25 cm of the colon. I take mesalamine and rowasa enemas. I find myself with mild flares every 6 - 12 months. I use Uceris to control the flares. While the flares are mild, I cannot retain long remissions. Can I do anything else to help with treatment? Moving up to the Immune Modifiers and Biologics seem to be an overkill and not sure if it is worth the risks.
A: I recommend discussing moving to a biologic therapy, perhaps considering vedolizumab which has a safer side effect/lower risk profile to prevent flares. I also recommend asking your gastroenterologist if your colon is healed on just mesalamine by mouth and the enemas. If there is still active inflammation on colonoscopy between flares it is prudent to add a biologic to achieve the goal of mucosal healing. Achieving healing of the colon can prevent further flares and minimize the risk of development of precancerous changes in the future.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
December 2020
Q: Is the Specific Carbohydrate Diet one that is helpful in controlling ulcerative colitis symptoms?
A: A Specific Carbohydrate Diet(SCD) is a grain-free diet that is low in sugar and lactose. It is considered an exclusion diet in which foods are eliminated from a patient's diet. It takes discipline to maintain; it requires more meal-planning and preparation. Studies with adults and pediatric patients with IBD have shown that a SCD is often more useful to manage symptoms for Crohn's than UC.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: My partner has had Crohn's for 10 years. Two years ago, he had surgery (resection). He loves food and has been focused on regaining weight lost. Now, he has put on weight and has been sedentary because of COVID-19. I worry about his diet which includes fried foods, rich sauces, take-aways, fizzy drinks, lots of snacks (crisps, sweets); odd eating times. I think he would benefit from professional help, although he is resistant. What can I do?
A: A registered dietitian is a helpful member of a patient's health care team. Consider a nutrition consult if he is interested in improving his diet. www.eatright.org is a useful way to find a dietitian in your area if your health care team does not have a dietitian. If he is interested in making a few changes, consider ordering healthier foods from restaurants for take-out or curbside. Add more fruits and vegetables. Many people have struggled with erratic mealtimes since mid-March due to pandemic.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I have ulcerative colitis that is in remission most of the time. Is coffee bad for IBD patients or just the caffeine component? Would decaf coffee be ok when I am in remission?
A: Caffeine is often considered an ingredient to avoid during a flare. Caffeine can have a laxative effect for some patients. A study looking a patients' perception of the effect of caffeine on symptoms (Barthal, 2015) showed that patients felt caffeine made GI symptoms worse. However, many adults continued to drink coffee. Decaffeinated coffee may be the safer choice. It is important to remember that caffeine is not associated with inflammation.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am looking for a protein powder supplement. I do not eat meat, though I will eat eggs. When in a flare-up, I limit my bean intake. I also avoid gluten as much as possible. Is there a certain type of protein that could be suggested for UC patients (pea, cranberry, whey, etc.)?
A: It is important to determine the amount of protein recommended. Talk to your health care team and set a goal. There are some many protein powders and drinks on the market. First, look at the protein source. Try a small amount of a dairy-based or plant-based protein powder to determine if you tolerate. Plant-based protein powder can be made from grains, nuts, soy, or seeds. Some protein powders are blends of a variety of plants. When comparing protein powders and drinks, look at the sugar content. Many supplements are high in sugar. When comparing protein powders and drinks, be aware a 2018 study showed some powders and drinks contain heavy metals like arsenic, cadmium and lead. Do your research before purchasing.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I just added Gluten free Bread to my diet. Are there other foods I need to add to my diet?
A: A bland diet is a meal plan that includes foods that are easy to digest. Choose foods that are low in fat, low in fiber, and easy to chew. A bland diet often consists of foods that are mild in flavor. Spicy foods should be avoided. A bland diet is generally a diet to exclude, not a diet to add foods. It might be useful to keep a food diary to identify any possible food triggers.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
November 2020
Q: My son is 7 and just diagnosed with Crohn's. His disease is severe. The doctor gave us a choice Humira or Remicade. How do you decide about which medication to choose?
A: This is a very common question. In my practice, we stress the importance of shared decision making between the physician, the parents and the most importantly, the patient. When selecting a new medication, it is key to be completely informed. As both adalimumab (Humira) and infliximab (Remicade) target the same inflammatory protein (TNF-alpha), their efficacy (remission rates) are essentially equal for Crohn’s disease. In addition, the safety profile are similar. How are they different. Adalumumab is given as an injection (typically in the lower abdomen or upper thigh) at home and infliximab is given as an infusion requiring an intravenous (IV) catheter with each dose. Adalimumab is injected every 2 weeks (although some patients require weekly dosing). The first 3 doses of infliximab (induction) are given over 6 weeks with maintenance doses given every 8 weeks (some patients may require infusions every 4-6 weeks). Infliximab infusions require outpatient visits at infusion centers with the infusion lasting 1-3 hours. Factors to consider between the two: convenience (home vs. infusion center) and patient preference to medication delivery (injections vs. IV starts). At our center, all patients starting infliximab receive the first 5 doses over 3-hours at our infusion center. If the infusions are well-tolerated, we provide the option of receiving those infusions over 1-hour and at the patients home with a nurse from the home health agency.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I am 15 and my dad has Crohn’s. Recently I’ve started showing symptoms and I know I need to tell my parents so I can see a doctor and find out if that’s what it is, but I don’t know how to tell my parents. I am terrified and I do not know what to do.
A: Whenever a parent is ill, it is natural for a child to be concerned about their own health. Although we know a family history of Crohn’s may increase the risk of Crohn’s disease in their children, it is also important to know that many of the signs and symptoms that are associated with Crohn’s disease are also shared with other illnesses, such as gastrointestinal infections (bacterial or viral causes), irritable bowel syndrome (IBS) or Celiac disease. In my practice, it is common to see siblings or children with a family history of Crohn’s disease and find out (by examination or testing) that the primary symptoms are secondary to another cause and not Crohn’s disease. In your situation, it is important to discuss these symptoms with your parents so they can make an appointment with your regular doctor. Your doctor will carefully listen to your symptoms, check your growth (height and weight), perform a physical exam and potentially order blood or stool tests to determine the cause. The sooner a diagnosis is made, the faster a treatment can be offered. If any of the symptoms are concerning for Crohn’s disease, your doctor will make an appointment with a gastroenterologist, a doctor specialized in diagnosing and treating Crohn’s disease. It’s really important to know that in the present day (2020), there are many more medication and dietary options to better manage Crohn’s disease than were available to previous generations. I tell each patient newly diagnosed with Crohn’s disease, that regardless of the ups/downs or curves in their road to recovery, our goal is to find the best treatment that puts them back on a straight path toward achieving all their personal goals!
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I was recently diagnosed with UC as a 30-year-old female. I had always assumed I would have children, but now I am worried about the risk children might face. What is the absolute risk that my children would develop IBD or another autoimmune disease? Of 100 children born to women who have UC, how many go on to develop an autoimmune disease?
A: While the cause of the inflammatory bowel diseases (IBD, ulcerative colitis and Crohn’s disease) is multifactorial, the current data suggests the absolute risk for UC is 1.6% with maternal UC and 2.7% with maternal Crohn’s disease. If both parents have IBD, then the overall risk is increased. It is important to discuss family planning with your gastroenterologist as there are some medications that may need to be stopped or changed prior to becoming pregnant. While there is so much more to learn about the risks of developing IBD, we do know the three main components are (1) genetic, (2) environment exposures and intestinal microbiome and (3) an inappropriate immune response. For IBD to develop, it’s a combination of the perfect storm of all three components. It’s natural for parents/patients to ask what they can do to prevent IBD in their own children? The latest data would suggest that environmental triggers that increase the risk of IBD are (a) exposure (active or passive) to cigarette smoking (b) increased use of antibiotics, (c) increased use of nonsteroidal anti-inflammatory drugs (NSAIDS like ibuprofen) and (d) consuming a westernized, highly processed diet. The current data also suggests that the key to optimal the best outcomes (child or adult) is recognizing (awareness) the symptoms of IBD, early diagnosis and timely treatment.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 18-year-old son was recently diagnosed with ulcerative colitis. He is 5’11” and is down to only 126 pounds. His body is not absorbing nutrients. They are going to put him on Humira and steroids. I have read the side effects of Humira and it scares me. What are his risks of taking Humira at his young age? He is also very depressed. What can I do to help him?
A: Although the diagnosis of ulcerative colitis or Crohn’s disease can be difficult for any patient at any age, it is important to recognize that depression and anxiety are extremely common when the diagnosis occurs during adolescence and young adulthood. At our center, we offer every child/young adult the opportunity to meet with our IBD-focused psychologist. We find that young patients really need an outlet to express their feelings as our behavioral specialists focus on teaching techniques to cope with the disease. Whether it’s use of guided imagery or deep breathing, coping is a learned behavior that young patients may not initially intuitively recognize or take the time to practice. It’s important to recognize when to ask for help with a psychologist or psychiatrist, even if your treatment center doesn’t have access to an IBD-focused psychologist. Adalimumab (Humira) is a medication that binds to a protein in the body called TNF-alpha. The multiple studies in adults and children have shown that it not only heals the intestinal tract, but also improves growth by improving gut absorption of key nutrients and improving the overall quality of life for the patient. It is classified as an immune-suppressing medication. While the use of this medication can be associated with an increase risk of certain infections, this is uncommon. Prior to starting, your doctor will check for an active TB infection and may check for active intestinal infections or fungal infections. The additional risks such as an allergic reactions to the injection, rashes, liver injury, and certain cancers are also very low. It’s important to discuss the specific risk/benefits with your doctor so they can tailor the treatment to your needs.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 17-year-old son has now chipped and broke 3 bone areas. He is on Remicade and these areas have not healed after surgery. Does Crohns affect bone health and healing or is it the meds?
A: Crohn’s disease can certainly impair bone health as all patients are at an increased risk of nutrient deficiencies (Vitamin D, Vitamin B12, zinc, iron and folate). Moreover, some Crohn’s disease patients may restrict their diets (such as dairy-free, lactose-free) to control symptoms, and therefore, can further exacerbate the risk of poor bone health by limiting both Vitamin D and calcium. For your 17 year-old son, it would be important to keep a 1-2 week diet history to further review with your gastroenterologist or registered dietician to better understand if his current diet is lacking specific nutrients. Given the history of poor bone health, he may require additional Vitamin D and calcium depending on this diet history. In my practice, we check Vitamin D every 6 months (supplement when needed) and check a bone density at the time of diagnosis and repeat if needed (such as following recurrent fractures or more severe disease). While clinical remission (no active gastrointestinal symptoms) is an important goal, we now recognize that complete gut healing is even more important in order to prevent further complications of Crohn’s disease. It is reasonable to review your laboratory markers with your doctor and ask if further testing is needed (endoscopy or abdominal imaging). In regards to the medication, we typically find that the infliximab (Remicade) improves intestinal absorption of key nutrients by healing the gut. As each patient requires personalized care for their IBD, I would recommend discussing potential medical side effects with your primary gastroenterologist as well.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
October 2020
Q: I have Crohns and had a permanent ileostomy 10 years ago. I have been having great health with minimal issues. But lately I feel like I have flares, fatigue, stomach aches, eye inflammatory issues, more frequently. Since I have an ostomy it is not the usual bloody diarrhea flares. I am not taking any medication since my surgery. Should I be taking medication?
A: If you are not feeling well and have fatigue and stomach aches, it is important to contact your health care provider and make sure the symptoms are evaluated. Your doctor will determine whether you need blood work, imaging like a CT scan or MRI, or scopes like an upper endoscopy to look into the esophagus, stomach, and first part of the small intestine (duodenum) or ileoscopy (scope through the ileostomy) to check whether there is any inflammation that may need Crohn’s medication or to find any other cause for symptoms. Even if Crohn’s is not the cause of your symptoms, it is important to get them evaluated and find a way to manage them so that you can have the best possible quality of life.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: Is it normal to have problems with sex while in a flare? I am a young woman with UC and I would like to know if there is anything that can be done about pain during sex?
A: Unfortunately, sexual dysfunction, which can include pain, is common patients with UC and CD. Please bring this up with your UC health care provider, so that they can provide you with a referral to a sexual health specialist. Sometimes given the difficulties with urgency and frequency that come with a UC flare, patients can develop pelvic floor dysfunction, in which the muscles of the pelvic floor have difficulty relaxing, which may contribute to pain. Pelvic floor physical therapy can be done, if this is found to be the cause of the pain.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: My partner has been diagnosed with Crohn’s Ileitis and she has been having terrible flare ups - always at night - her stomach swells to the size of a big balloon and is rock hard. The pain is unbearable for her. It is very difficult to watch and I feel so helpless. I have two questions: 1) Is this a normal effect of Crohn’s 2) What can I give her to ease the pain?
A: Unbearable pain should never be a normal part of Crohn’s disease. The goal for our Crohn’s patients is to be well, and in a stable remission. If your partner is in pain, she should undergo testing with her health care provider to find out why the bloating and pain is occurring, and what can be done to treat the underlying problem. Your partner’s health care provider can provide suggestions for pain control if needed as well. In the meantime, Ibuprofen and other NSAID pain relievers should be avoided in IBD patients, because frequent use can worsen GI tract inflammation. Acetaminophen, in doses as directed on the label, is an over the counter pain reliever that can be used safely for IBD patients. 5. I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual sympto
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual symptom of diarrhea but had eye inflammation a few times this year. My doctor wants to start Humira and Imuran. I am very worried about the side effects especially since these suppress the immune system. I am worried about getting cancer and other infections. Are these medications usually safe and well tolerated? Is it best to start this level of treatment even though I have mild CD?
A: Crohn’s disease in the small intestine often does not cause diarrhea, since it is the job of the colon to absorb water and create formed bowel movements. If your Crohn’s is limited to the small intestine, it makes sense that your colon is still doing its normal job of making regular, formed bowel movements. Sometimes the symptoms of small bowel Crohn’s, like bloating, or abdominal pain, can be harder to notice if they happen slowly over time. Some types of eye inflammation can be linked to bowel inflammation, and Humira is also indicated for the treatment of one type of eye inflammation called uveitis. Yes, the medications are usually safe and well tolerated. In Crohn’s disease, for reasons that we do not completely understand, your immune system is doing something it should not---it is attacking your small intestine. Humira and Imuran are meant to turn down this overactive immune response. Most patients tolerate these medications well, and your health care team will be carefully monitoring you to make sure this is the case. Risks of cancer are very low as well. There are several things you can to do help keep yourself safe and help prevent infections and cancer, which include keeping up to date on vaccinations and cancer screening. The Crohn’s and Colitis Foundation has made a checklist for the best ways to maintain your health, which can be found here: https://www.crohnscolitisfoundation.org/sites/default/files/2019-09/Health%20Maintenance%20Checklist%202019-3.pdf When your doctor makes a decision regarding the best treatment for you, the decision includes not only how active your disease is right now (thankfully mild for you), but also the risks of the disease becoming worse or developing complications in the future. Therefore, even though the disease may be mild now, it likely is important to treat it now, so that you can enter remission, and it never becomes anything more than mild.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: My UC was diagnosed in 2009. Prior treatments include 6MP, canasa, steriods (oral and enema), Remicade. I have been on Humira 6+ years, which has managed UC and inflammatory arthritis. For the past year, have been developing chronic sores on skin which has been recently diagnosed as chronic HSV2. Dermatologist believes I will be on Valtrex indefinitely. Considering a switch to Entyvio or stopping biologic treatment. Any research specific to HSV2 and biologics?
A: Very few cases of HSV2 associated with anti-TNF biologics have been reported in medical journals. Most cases seem to have been associated with patients on multiple immunosuppressants, such as prednisone and/or 6MP or Imuran along with a medication like Humira or Remicade. Risks and benefits of your medications are important to discuss with your health care provider to come up with the best plan that may work for you. Keep in mind that stopping biologic treatment may lead to a flare of your UC or arthritis, which could lead to steroid use. Steroids are much higher risk than biologics when it comes to infectious risk. Entyvio (vedolizumab) is thought to be an intestine specific medication, and thus far, has not been associated with risk of other infections. However, Entyvio may not control arthritis and may require that a second medication be started to control the arthritis.
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Sushila Dalal, MD
Assistant Professor of Medicine
September 2020
Q: I was diagnosed with mild/moderate colitis three years ago. I’ve been on mesalamine enemas (daily) and max doses mesalamine tablets (daily) for over a year since then. I felt great for a long time, but now I have what I would guess is a flare. Could my symptoms be a reaction to the mesalamine? I read somewhere the medication can make symptoms worse and I’m not sure if over time on max dosing daily, my body may have started to react differently to the meds?
A: There are several reasons that patients might have increasing symptoms after feeling well for a period of time. Even when patients feel well they might have subclinical inflammation, and this increases the risk for clinical symptoms/relapse (flare). Most patients who experience an intolerance to mesalamine will experience early in treatment course, so I think I would look at other reasons for active symptoms. Your health care team should assess for infection as possible cause and consider other objective assessments (CRP, fecal calprotectin or possible endoscopy). If you have active symptoms but evaluation is without active disease, consider other causes for symptoms. If you have active inflammation, the location of the inflammation will help your team guide therapy.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: I am 19 and was recently diagnosed with ulcerative colitis. I have a diet without allergens, glutenfree, and low fiber. I already tried steroids, I'm taking pentasa (enema and granules) and starting ozone therapy, but I'm still in the active phase, in which I have been almost 4 months. how long is normal to be in the active phase? if ozone therapy does not work for me either, what treatment will it be next?
A: First I think that active symptoms/inflammation x 4 months is too long. If you did not have a response to steroids that raises a concern for more severe disease and that mesalamine therapy (Pentasa) is probably not the optimal choice of therapy (only indicated for mild-moderate inflammation and not indicated in steroid refractory cases). Ozone therapy has been studied in limited number of patients and has minimal data in the use in IBD. The study was done with mild-moderate disease taking sulfasalazine, the study done in 2010 looked at outcomes/improvement by both symptoms and endoscopy at 4 weeks. I would say at most I would give this regimen 4 weeks, however ensure you are under the care of an IBD specialist who has done a thorough assessment for other possible causes for a prolonged flare.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: I was diagnosed with lymphocytic colitis this year at 23. My doctor is a bit puzzled as I guess I am young for this form of colitis, and I’m not on any daily medications that have been known to lead to it. I was just curious if there are any other potential causes I should bring up in my next appointment. I was also interested if, without an exact cause, if this is likely to be something, I will have to consider long-term medication for.
A: We are starting to see lymphocytic colitis (a form of microscopic colitis) in a younger population than previously described. If you are not taking an acid suppressing therapy (PPI) or NSAID which are the more common associated therapies but not required for the diagnosis. In addition we see this more commonly in those patients who smoke cigarettes. Patients with microscopic colitis are more likely to have a diagnosis of celiac disease, it would be important to have assessment for this as well. Some patients do require long-term medication, it depends on how you respond to initial course of treatment. My experience with my younger patients diagnosed with microscopic colitis is that they respond well to treatment but often require a maintenance (longer term) medication to continue to stay well.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: My son has colitis he has been on Infliximab for about 4 years his insurance made him switch to a bio-similar Infliximab-abda. He has had two treatments with the new medication and recently presented with two small blood clots, one in each lung. I feel the switch was the cause of the clots. Is there any research on side effect occurring in patients switched to a biosimilar after being stable on the original medication?
A: I am sorry to hear about your son’s recent complications. There have been multiple studies looking at the safety and effectiveness of biosimilar therapies like your son is on. There is no increased risk in biosimlars than that of Remicade (originator therapy). The things to consider when a patient with IBD develops new blood clots is to ensure that his inflammation is under control on his therapy and evaluation for possible hypercoagulation disorder. But based on what we know in clinical trials it would be hard to link his transition to biosimilar to new blood clots.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: I am a 29-year-old Male, taken Humira for Crohn’s for 8 years, and just had a Small Bowel Resection in March. My GI stopped my Humira and opted for me to not restart it. She wants me to try another Biologic and after discussing the options we landed at Stelara. Is it common for one to start Stelara post-surgery after their disease slowly progressed while on Humira which lead to surgery? I cannot find any definitive information regarding my specific combination or scenario.
A: I hope that you are recovering well from surgery. It is hard to say without knowing more details of your case. If you had adequate levels of Humira (>7.5) and active disease at the time of surgery it is reasonable to consider alternative treatment options as a post-op prevention strategy. However there are times (again depending on the case) that you had surgery because the disease already resulted in scar tissue and that the surgery was not a true failure of treatment but it could be been due to progressive disease prior to Humira or subtheraputic dosing of the Humira. If you have a concern about moving forward with Stelara (which is a very effective therapy for Crohn’s disease) I would consider a formal 2nd opinion.
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Jami Kinnucan, MD
Assistant Professor
August 2020
Q: I’m having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I have been eating a BRAT diet. Only water, low sugar Gatorade and Chamomile tea. I just purchased some Gluten free Bread. What other foods can I add to my diet.
A: Diet prescriptions are very patient and provider specific, so if you are not sure what you’re supposed to eat please ask your provider for clarification. In general, a bland diet means to eat foods that are low fat, and not heavily spiced. Foods that are baked, steamed, boiled, poached would be allowed on this diet. This is similar to a BRAT (banana, apples, rice, toast) diet which is also low in fiber. You don’t have to avoid gluten on a bland diet and you may be able to tolerate plain white bread and pasta. You can also add plain proteins (hard boiled egg, baked/boiled chicken, canned tuna packed in water, lean ground beef, firm tofu, plain yogurt, creamy peanut butter), refined grains (white rice, white pasta, white bread, rolled oats, rice cereal), cooked vegetables (cooked spinach, boiled/baked potatoes), peeled fruits, and pureed beans/lentils. Be sure to include these plant foods in your diet because they help feed a healthy microbiota (the microbes in your gut), provide soluble fiber which will help your colon recover, reduce urgency, and reduce bowel movement frequency.
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Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: I was awaiting a bowel resection, which has been cancelled due to Covid-19. In the meantime my consultant has recommended a liquid/ semi liquid diet along with 1/2 supplementary drinks per day. I am really struggling to adjust; I am constantly hunger and I am confused on what foods are okay? Am I allowed mashed potato and vegetables? Some reports say yes others say no? Am I allowed high fiber cereals like Weetabix, which I previously was told to avoid but now my diet largely lacks fiber.
A: There is no official definition for a “semi liquid diet” so please get clarification from your provider on this. They may have a dietitian that they work with that they can refer you to for individualized nutrition counseling. For our patients needing surgery we sometimes recommend a full liquid or low fiber diet until they can have surgery. A full liquid diet would include foods like milk, pudding, smoothies, yogurt, and soups that have been pureed (without chunks or hard particles). The next step up would be pureed foods, like mashed potatoes, pureed carrots, apple sauce, pureed meats, creamy nut butters, cream of rice, pureed beans. The mashed potatoes and cooked/soft vegetables may fit your provider’s definition of semi-liquid if they are pureed or easily mashable in your mouth. Weetabix would not be allowed, neither would salads, dried fruits, coconut, mushrooms, or anything that takes a lot of chewing to break down. You may need to eat several times daily, or larger portions if you are getting hungry. You can also ask your provider about nutrition supplements to help prevent weight loss before surgery (which can lead to more complications), give you energy, protein, and vitamins/minerals while you are on this restricted diet waiting for surgery. Some nutrition supplement options include Ensure, Boost, Kate Farms, Orgain, and Modulen.
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Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: My brother was just diagnosed with UC and has been out of the hospital for a week. He is unable to keep food down and has lost 25lbs and counting. What are some suggestions on things he can eat for protein and fat?
A: A registered dietitian can help your brother understand which foods to eat to help regain his weight and recover from his recent hospitalization. Protein will be important to help him recover, and energy from soft foods will help him regain weight. Sometimes high fat foods can make symptoms worse. Some foods he should try to include are: Baked chicken, firm tofu, plain yogurt, creamy nut butters, plain rice/pasta, sourdough bread, steamed vegetables, peeled fruits (apple sauce, banana, melon), and pureed beans. Beans are really good for the colon as they are fermented by gut bacteria to produce anti-inflammatory short chain fatty acids. Too many beans at once can increase gas and bloating, so he should try small portions initially (1/4 cup to ½ cup). When he’s feeling better, and if it’s ok with his doctor, he should try to eat more high fiber foods (whole fruits, salads, whole nuts, seeds, beans, whole grains) as these will help stimulate the growth of good microbes in his gut and prevent chronic illness like diabetes, heart disease, and high blood pressure.
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Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
July 2020
Q: My fiancé was diagnosed with ulcerative colitis (UC) 13 years ago and says he never has had a major flare since his initial diagnosis. It is controlled with Lialda (mesalamine) and he gets colonoscopies once or twice yearly. He has pancolitis and each time they see quite a bit of inflammation and take many biopsies. Can you have active disease without symptoms? Is it worth the risk of additional side effects to step up treatment to reduce inflammation despite no symptoms?
A: It is certainly possible to have ongoing inflammation without symptoms. Based on your description of the colonoscopy findings, the disease is not well-controlled on current therapy. It’s always important to have a discussion with the gastroenterologist about the risks and benefits of each medication option that is being considered in order to come to a thoughtful decision that is shared, and one with which everyone is in agreement. Remember: the risks of ongoing inflammation on colonoscopy, including flares and hospitalization, surgery, and malignancy, are oftentimes bigger than the potential risks of the medications used to treat the ulcerative colitis, especially when it is severe. Symptom control is important, but ultimately, we must also strive for healing of the lining of the colon (called “mucosal healing”) and symptom control in order to give patients the best chance of being healthy in the longer term.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I have Crohn’s and have been on prednisone for more than 20 years. Is this normal or ok to be on this medication for so long.
A: The short answer is no. The longer answer is that prednisone is a medication that should only be taken in the very short term, and with a finite plan in place for a longer-term, safer medication to take that avoids steroid use. Long-term steroid use is wrought with side effects and is not a safe choice for treatment of inflammatory bowel disease. It is crucial to speak with your gastroenterologist to come up with a formal plan to transition you safely from steroids to a steroid-sparing medication that has been shown to benefit patients with Crohn’s disease.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with collagenous colitis (microscopic) 8 yrs. ago. I would like to know if budesonide is a successful treatment for this condition. My doctor recommended it, but I am concerned with the side effects. What is the maximum amount of time that this medication should be taken.
A: Budesonide works very well in patients with microscopic colitis, and studies pitting the medication against placebo show that those patients who took budesonide did significantly better than the placebo group. Even though budesonide is a steroid that has little systemic exposure because of how the body metabolizes it, we do not like to use budesonide in the long term, because adverse effects of long-term steroid use is not to be ignored. Generally, for microscopic colitis, the recommendation is to be on the medication for about 6-8 weeks, and then begin a taper and eventually come off the medication entirely.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with UC one month ago. I am a male in 60s and in very good physical condition - except for UC. I have taken prednisone for 4 weeks, tapering down each week from 40mg a day to 10 mg and now finished. I just started a course of mesalamine by mouth and a suppository, and it seems to be working. I’m worried about hair loss, and if there are any ways to overcome this specific side effect.
A: It’s great to hear the mesalamine is working well to treat your symtoms and the inflammation. Unfortunately, hair loss is a known potential side effect of mesalamine. It is reported to occur in <3% of patients. There are other reasons for hair loss in patients with IBD: telogen effluvium, which usually occurs in the context of active disease, nutritional deficiencies, and stress, for example. Speaking with a dermatologist about concerns of alopecia, or hair loss, may help with overcoming this problem.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have Crohn’s disease and was recently diagnosed with Immune thrombocytopenia purpura (ITP). How common is it in Crohn’s patients? What are some concerns I should discuss with my doctor.
A: ITP in inflammatory bowel disease (IBD) is considered rare, with less than twenty cases reported in the medical literature. It is a type of “extraintestinal manifestation” of IBD, or a condition that patients with IBD may have that is unrelated to the gut, but is directly related to having the disease (ex include joint aches, eye or skin conditions, and blood disorders like ITP to name a few). Concerns to discuss with your doctor would be if any medications used to treat ITP interact with medications used to treat Crohn’s disease, or could exacerbate symptoms or cause worsening inflammation.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have ulcerative colitis and I want to get breast augmentation (probably a lift with implants). I have been in remission for years and in good shape. I take Apriso (mesalamine) to stay in remission. Is it safe to get cosmetic surgery? I am concerned about a possible flare up.
A: If your symptoms are well-controlled, and your colon looks healthy on colonoscopy, you are in what we would characterize as “deep remission”, which is the goal we strive towards in our patients with IBD. For an elective surgery unrelated to the bowel, this is the ideal position in which to be. A potential flare-up is always a concern, especially when the body is subjected to stress, but some flare-ups are ultimately not in anyone’s control. However, positioning the surgery at a time when you are in deep remission is the wisest choice, and one you should discuss with your gastroenterologist before going ahead with the surgery.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I am 33 years old and had a colonoscopy recently because I had blood in my stool. The doctor says I have ulcerative colitis but then I found out he took biopsies. I am wondering the purpose of the biopsies are since he knows what is wrong with me.
A: A diagnosis of inflammatory bowel disease (IBD) requires many types of testing – taking a detailed history about a patient’s symptoms, family history, and tobacco history/exposure, for example, is one crucial part. Other important information to gather includes bloodwork and stool testing, colonoscopy findings and biopsy samples, and sometimes imaging tests (cat scan or MRI for example), and sometimes even additional testing still. Taking biopsies during the colonoscopy is standard when a diagnosis of ulcerative colitis is suspected.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2020
Q: I have Crohns disease and require monthly B12 injections as I cannot absorb it through my small intestine. I'm not able to get my B12 shots during the current Covid 19 crisis because my physician’s office is only seeing very ill patients. My physician ordered a prescription B12 nasal spray, but it's not covered by my health insurance and cost is $6,000 per month. What is my best OTC, non-pill-form option for me during this time? My last B12 injection was in early February.
A: As you mentioned, some patient’s with Crohn’s disease have impaired ability to absorb vitamin B12 taken orally (whether as pills or in the diet). Therefore, monitoring of B12 levels and correction if needed will be prescribed. In general, total body stores of vitamin B12 are approximately 2-5mg with about half of that in the liver. If B12 intake stops, deficiency typically does not develop for at least 1-2 years. So, it may be reasonable to wait till your doctor is seeing patients in clinic again and then resume your prior injections. Alternatively, there are studies that showed taking high dose (1000 to 2000 mcg) oral vitamin B12 daily can still be absorbed (about 1% of what is ingested) and maintains B12 concentrations.
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Rajesh Shah, MD
Gastroenterologist
May 2020
Q: My adult niece has UC and was on prednisone for 4.5 months. Once tapered down she seemed to experience a psychotic episode. While doctors were able to mitigate the episode, they took her off of Adderall which she desperately needs to manage her day. Is it common for prednisone to lead to psychotic events (and how long they last?). What can one take in place of Adderall that won’t feed the psychosis?
A: This is an important topic and can be quite distressing to patients and families. Prednisone is an effective short-term treatment for patients with ulcerative colitis; however, a known side effect of it is psychosis. There is limited research on how often this occurs, but the data suggests <10% of patients develop psychosis, and this is more common with higher doses (>20mg daily) for a longer time period. Keep in mind, prednisone is used as a bridge to another therapy and ideally other medications will be used long term to control UC symptoms. Once stable on another medication, resuming previously used medications, such as Adderall, under the supervision of her PCP may be possible.
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Rajesh Shah, MD
Gastroenterologist
May 2020
Q: I am concerned about the Coronavirus. I have Crohn’s and I’m on a biologic. Are there any particular concerns or precautions IBD patients should take?
A: Information on the coronavirus is evolving daily. The current recommendation is universal precautions, with strict hand-washing and avoidance of individuals displaying flu-like symptoms. More information on IBD patient guidelines, high risk groups, updates and recommendation on IBD medications and other important information is available on the Crohn’s & Colitis Foundation website at: https://www.crohnscolitisfoundation.org/coronavirus-update/adults
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
April 2020
Q: I am 22 years old and have had Crohn's disease for 6 years with no other comorbidities. I've had anal skin tags and fissures during this time, and they have become progressively more irritating and painful. I've tried sitz baths and diltiazem, but they haven't helped. My GI and a colorectal specialist did not recommend removal. Are there any safe home remedies you can discuss to decrease the swelling, shrink the skin tags, or remove them all-together?
A: a. Anal fissures and skin tags are frustrating complications of Crohn’s disease. Anal fissures are ulcerations in the lining of the anal canal due to underlying inflammation, which can lead to bleeding and anal pain. These can be associated with skin tags (also known as acrochordons) and also cause discomfort. In general, persistent anal fissures may be a sign of continued inflammation related to Crohn’s disease, so speaking with a gastroenterologist to optimize Crohn’s disease therapy is recommended. Additionally, therapies, as you mentioned, such as warm sitz baths, topical analgesics and medications, such as topical nitroglycerin or nifedipine have shown benefit. These will be used for 1-2 months and then a response is assessed. In general, medical therapies will be pursued to manage anal fissures, since surgical options carry the risk of fecal incontinence and poor wound healing.
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Rajesh Shah, MD
Gastroenterologist
April 2020
Q: I’m 57 and have had Crohn’s in my colon for decades. I went through each of the biologics one by one until they each failed. I had a total colectomy last August and now no longer take biologics or prednisone. Two months after surgery I started having severe muscle/tendon and joint pain. Is this refractory inflammation after being on biologics? Will it go away. over time?
A: It is important to remember that Crohn’s disease can lead to inflammation anywhere along the gastrointestinal tract, from the mouth to the anus. So, despite the inflammation previously being localized to the colon, the possibility for recurrence in other areas of the GI tract should be explored. In terms of joint manifestations of Crohn’s disease, they are more common in patients with large intestine (colon) involvement. Blood tests can be checked to broadly evaluate for inflammation but can reflect both inflammation in joints as well as the intestine, so they can be of limited value. Follow up with a gastroenterologist to evaluate for recurrent Crohn’s disease and possibly a rheumatologist may be warranted.
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Rajesh Shah, MD
Gastroenterologist
March 2020
Q: Does pancolitis affect life expectancy? Also, what is the risk of colon cancer in people with pancolitis?
A: Life expectancy can be affected in patients with ulcerative colitis or Crohn’s colitis when they have at lease one third of the colon involved. The increase in risk of colon cancer is about half a percent per year after 8 years of disease. For example, after 16 years of ulcerative pancolitis, the risk for colon cancer is 4%. If you’ve had the disease for less than 8 years and have no other risk factors like family history of colon cancer, then there is no increased risk to you for cancer. An exception is in those patients with ulcerative colitis and primary biliary sclerosis (PSC). The risk for colon cancer starts to increase before 8 years. The key in any case is the keep the colon in a state of remission and zero to minimal inflammation throughout the duration of disease and to attain appropriately scheduled colonoscopies for early detection of “dysplasia,” precancerous areas or polyps.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I have Crohn's and began taking Remicade in 2017 with no issues. At the end of 2019 I started having pains in joint/muscle. The pain started in the thighs, moved to the knees. It moves around the body to different joints daily or every 2-3 days. It gets bad into the evenings and calms down during the day. I also have a rash around the under arms and itchy welts that appear on the torso once in a while usually the size of a golf ball. Can these symptoms be from the Crohn or medication?
A: Extraintestinal manifestations can occur in up to 25% of patients with Crohn’s. These can be rashes, joint pains or vision problems. We usually recommend working with a rheumatology and dermatologist in these cases. Sometimes, medications like Remicade can cause lupus-like reactions or even types of joint pain called “arthralgias.” Another phenomenon that may be happening is that your body is making antibodies against the Remicade in your body. This can be tested for with a standard blood test that will also check for the appropriate concentration of Remicade in the blood.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I am a 45 year old female newly diagnosed with Moderate UC on both left and right sides of my colon. My GI and I have narrowed options down to Imuran or Remicade/Humira. My main concerns are immune suppression and side effects. Can you share your experiences from your patients and input to help inform my decision? I realize treatment response and side effects are highly individualized, but I am trying to get a crowd source view of the two to help inform my decision with my doctor.
A: With the advent of improved understanding and monitoring mechanisms with the “biologic” medications like Remicade and Humira, we’re realizing these have a better safety and efficacy profile than the Imuran type medications. Make sure you attain age-appropriate vaccines, including influenza and pneumococcal series, which will help with infection risks. Between Remicade and Humira, it’s really up to the patient whether they want infusions (Remicade) every 2 months or injections (Humira) every 2 weeks. Safety and efficacy are similar in this class. Also consider Entyvio or Stelara as future options.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I am wondering about the safety of using zinc supplements with Crohn’s. My daughter has Crohn”s and I have given her a zinc supplement to use to help recover faster from a cold virus. There are warnings on the bottle of zinc stating that people with autoimmune diseases should avoid zinc. Is this a valid warning for people with Crohn's?
A: On the contrary, zinc deficiency, along with iron, vitamin D and vitamin B12, can be seen in Crohn’s disease. I would recommend checking zinc levels and if appropriate and normal no need for supplementation. Short courses of zinc supplements for viral infections is considered safe.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: My 24-year-old granddaughter was diagnosed with small bowel Crohn’s, December of 2019. She met with the GI doc in Jan 2020. I went with her and the doctor did a good job of explaining her results from her tests and said his plan was to start her out on a course of Prednisone for 8 weeks. After completing the Prednisone his plan is to start her on Humira. I'm concerned that she is starting on these drugs too soon. Couldn't diet modification be tried first?
A: There are some recommended dietary modifications that can be used as a complement to traditional therapy for Crohn’s. Please see the Crohn’s and Colitis Foundation website. Most patients need biologic therapy with Crohn’s to truly alter the disease before it gets too late and we run into complications like narrowed bowel (strictures), infections (abscess) and abnormal connections (fistula). Some studies show us that if you wait an average of 13 months before starting biologic therapy then the risk for these complications rises dramatically.the biggest adverse effect in Crohn’s is under treated disease, not the medications.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I was diagnosed with UC- pancolitis in Sept 2019 and given 1.5mg Apriso. This helped for a month with less BM/blood but symptoms returned after about 45 days and treatment failed. He ordered fecal calprotectin with result of over 2000 μg/mg, yes over 2000. I’ve been on prednisone for 8 weeks. My doctor recommended Entyvio but my insurance said no. How can my doctor get my health insurance to approve Entyvio bypassing step therapy of Humira/Remicade?
A: Humira or Remicade are acceptable therapies for your current situation. Please see answer posted this month for a discussion on biologics. If you absolutely want Entyvio, there are resources on the Crohn’s and Colitis Foundation Website for appeal letter samples that you can send to the insurance company or to your doctor office to use as a template.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
February 2020
Q: I have Crohn’s Disease. A lot of foods such as dairy give me painful side effects like gas, stomach aches or nausea. Can you help give me a list of nondairy alternatives?
A: Some patients with IBD may also have underlying lactose intolerance. Lactose is the type of sugar in milk and dairy foods.
To digest lactose, people need a specific enzyme in the small intestine called lactase which can be impacted by inflammatory bowel disease. If you have trouble digesting lactose, you may experience diarrhea, bloating, stomach pain, and gas symptoms. Limiting or avoiding milk and dairy products can help ease these symptoms.
Taking lactase supplements before having milk and dairy products may also help. Milk and dairy containing foods are a primary source of calcium, so making sure to include other sources of calcium in the diet or speaking with your healthcare provider about a multivitamin would be beneficial. Dairy/lactose free alternatives include lactose-free milk,
nondairy creamers, nondairy whipped toppings, soy based sour cream, and other almond, cashew, oat, pea protein, rice, or soy based dairy alternatives. Some people with lactose intolerance can safely eat dairy foods that contain a little lactose (less than 1 gram lactose per serving) such as aged cheese. Be sure to check product ingredients. Avoid foods made with butter, cream, milk, or milk solids. Also avoid products when the ingredients list states, “may contain milk.”
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I recently was diagnosed with IBD. I am in college and have been doing a lot of walking around campus which is tough due to my joint pain. I have been eating a lot of sugar lately too. Could my joint pain be related to dietary sugar intake?
A: It has been demonstrated that dietary sugar consumption contributes to increased inflammatory processes in humans. The evidence suggests that eating too much added sugar and too many refined carbohydrates can cause inflammation in the body. Processed sugars trigger the release of inflammatory messengers called cytokines. According to research, it has been shown that dietary sugar intake especially sugar-sweetened beverages may be a key stimulus of subclinical inflammation, as measured by the inflammatory marker C-reactive protein (CRP). Added sugars contribute sweetness and although they add calories, offer minimal nutrition. Make sure to read nutrition facts labels carefully. Many foods now list added sugar separately. You also can find added sugar by reading the ingredients. On an ingredient label, sugar may appear under many names. Some of the most common ones include cane sugar, evaporated cane juice, corn syrup, high-fructose corn syrup, raw sugar, brown sugar, honey, maple syrup and brown rice syrup. Dietary Guidelines for Americans recommends limiting added sugars to no more than 10% of daily calorie needs, which is about 12 teaspoons (48 grams of added sugar) on a 2,000-calorie diet.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I have mild-moderate Crohn’s since the end of 2014. There are about 60+ foods that make me sick ranging from; milk, pasta, apples/berries, most greens, eggs, bread, oatmeal, corn, nuts, to beef/pork, etc. My intolerance is the same with/without meds. Can something else going on?
A: If gastrointestinal symptoms are still present after food intake regardless of disease activity, discussing this with your health provider could prove to be beneficial. Some patients with inflammatory bowel disease experience intolerance to food items due to underlying disease related inflammation; however, when IBD is in remission and symptoms are still being experienced after eating, this may be due to a specific intolerance, such as lactose or fructose intolerance, or Irritable Bowel Syndrome in addition to IBD. A low-FODMAP diet may help with IBS and in some cases can help reduce IBD symptoms, but research doesn’t support its use for reducing IBD inflammation. This diet is not typically recommended if you are in a flare, but it can be helpful if you struggle with gas, cramping, and bloating and dietary intolerance. FODMAP is an acronym for Fermentable, Oligo-, Di-, Monosaccharides and Polyols. The language may sound complicated, but it is a diet that cuts back on a group of sugars that can be poorly absorbed by your GI tract. This includes foods containing fructose, lactose, sugar polyols (sorbitol and mannitol), fructans (found in garlic, leeks, artichokes, and wheat), and galacto-oligosaccharides (found in lentils, chickpeas, and black beans). Meeting with a dietitian can help identify which of these food items could be potentially worsening symptoms, and which foods can be reintroduced without exacerbating symptoms. Keeping a food log may also be helpful to help correlate specific symptoms with food items.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: My 7-year-old has mild ulcerative colitis. Would it be safe to try intermittent fasting diet with him?
A: Research has shown that dietary changes can have a big impact on inflammatory bowel disease management. Intermittent fasting (IF) is an eating pattern that cycles between periods of fasting and eating, traditionally used for weight loss. To find out whether intermittent calorie restriction or fasting plays a role in reducing inflammation, a University of Southern California preliminary study published in Cell Reports in March of 2019 tested cycles of a low-calorie, low-protein, plant-based diet on mice with inflamed bowels. In the mice given cycles of the fasting-mimicking diet, gut inflammation and other signs of IBD appeared to improve. Additionally, researchers tested three cycles of a fasting-type diet in 100 healthy people. People who started the study with higher levels of certain inflammatory markers had noted improvements in certain serum indicators by the end of the fasting diet, which may point to a role in lowering inflammation. However, any type of fasting or restrictive diet can be difficult to adhere to and may not be suited for IBD patients given their increased risk for malnutrition. More research is needed on this particular diet such as a clinical trial to test the safety and efficacy of these fasting diet cycles in people with IBD. Intermittent fasting is not as of now recommended as a way to help treat IBD and is also generally not recommended for individuals in periods of rapid growth, such as children and adolescents.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2020
Q: I am in a relationship with my girlfriend who has UC and she has just lost all sex drive. She says she still finds me attractive and everything but it hurts and she just doesn’t “get in the mood” anymore really. What can I do? I have hardly had sex 6 times in two years and it is REALLY effecting my mental and daily life as well.
A: Thank you for this question on a sensitive and important topic, intimacy and sex in IBD. I appreciate that you are asking what YOU can do. It’s a good place to start. Expressing how you feel about the current state of your relationship in a compassionate way may open the door to learning how your girlfriend is feeling. Perhaps she is struggling with symptoms that she feels embarrassed by? Maybe due to medication or disease activity she has low energy, fatigue, pain, low sex drive or body image concerns? She may feel sad, depressed, worried or frustrated? All of which can dramatically impact how one wants to engage with their partner. Your girlfriend may desire to be intimate with you, but her physical or emotional symptoms may be a major factor. By opening the door of communication, together you can discuss what your next steps are as a couple. Establishing care with a therapist who understands the nuances of chronic health issues may be helpful for you. Therapy goals might include having a safe place to express your feelings, learning communication strategies and developing ideas for different types of intimacy that may aid in strengthening your relationship. If your partner believes that her disease is contributing to her intimacy concerns, talking with her medical team is important. Talking with a gastroenterologist about sex might seem uncomfortable, but this is an important conversation. They need to know many of the most personal aspects of your life because they may be able to help. The doctor may run labs, assess disease activity and/or have some suggestions to aid in stabilizing health which may with time boost mood and sexual desire. If pain or discomfort contributes to the lack of sexual interactions, her doctor may recommend working with a pelvic floor physical therapist. Your girlfriend may also benefit from a mental health provider to discuss the various stressors/complexities associated with having IBD.
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Megan Riehl, PsyD
Assistant Professor of Medicine
January 2020
Q: I have Crohn’s and been in a flare up for so long. I am getting depressed. Most days I don’t want to get out of bed to go to work because I am so tired from everything including diarrhea, fatigue, abdominal pain, weight loss and sleeplessness. Doctors are trying to find the right medications to get me in remission. Is there medication I can take or something I can do to get me out of my bad mood. I feel so down and defeated all the time.
A: I am sorry you are not feeling well and commend you for being aware of how your physical health can impact your mood and emotional health. Ensure that you are discussing both physical and emotional symptoms with your gastroenterologist. They may need to run labs (iron deficiency anemia, Vitamin D, B-12, TSH, etc) to see if there are deficiencies that are also contributing to your fatigue, healing and mood symptoms. By treating the deficiencies physical and emotional symptoms may see improvement. There are different types of medication that can be prescribed to aid with mood stabilization that you can speak with your physician about. However, working with a mental health professional to discuss your depression, learn ways to cope with emotions related to the complexities of IBD and over time gain confidence to manage emotions and stress related to disease management. Sometimes therapy is enough to get you feeling well again, other times a combination of medication and therapy is best. Be open with your physician; ask if they have a referral recommendation for a mental health provider. If you and your team think medication is a next step for your treatment plan, consider consultation with a psychiatrist. You can check www.romegipsych.org to see if there is a mental health provider who specializes in working with people who have gastrointestinal conditions.
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Megan Riehl, PsyD
Assistant Professor of Medicine
December 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. I am currently on methotrexate and I don't want to have to go on biologics. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: I am concerned that you may be constipated due to the narrowing that you describe. If your doctor does not think that you need different medications or a surgery for the narrowing then I can suggest some tricks for the constipation. Limited amounts of soft, cooked vegetables and vegetable soup, plenty of water (64 ounces or more) and using a laxative as directed by your doctor can all help. The best lifestyle change can be walking. I suggest discussing with your doctor whether you are at the point where methotrexate is the right choice for you or you might need surgery or escalating therapy. Trying biologicals too late does not help with reversal of disease.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2019
Q: What is your thoughts on using Senna Tea for constipation?
A: Senna tea can help with constipation but if you have an obstructive stricture, this will not be a good idea. There can also be side effects of the tea so be sure to discuss the use of any products with your health care provider.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter ?
A: Almond milk or peanut butter will not cause any harm. Nut by themselves are not harmful, we recommend avoiding nuts in patients with strictures in case undigested material gets impacted.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
November 2019
Q: I have been reading a lot about my Crohn’s and research into serotonin and dopamine uptake imbalances found in Crohn’s patients. I am looking for more information on the subject. Can you direct me to any resources on this subject?
A: I’m sorry, we don’t know enough about this as it pertains to IBD. For example, >95% of our body’s serotonin is in the gut, and we know that this an important molecule as it pertains to intestinal motility, sensation, and secretion. This is why a lot of us try SSRIs (typically used in depression) for symptoms of pain or diarrhea. However, whether this is a something we can manipulate to treat IBD has not been studied well, mostly because we don’t have a full understanding of the mechanisms of serotonin in regards to IBD inflammation.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: Is there research that suggest the likelihood of UC developing into Crohn’s?
A: Most of us do not think that UC develops into Crohn’s. It’s true that in 5-10% of patients, we don’t always know the difference, since there is a lot of overlap at least clinically so we categorize people as “indeterminate colitis” when we are unsure of the type of IBD. I have patients who have initially diagnosed with UC who in reality find out later to have Crohn’s, and this is in spite of all of our technology and all of our experience seeing IBD patients all day. It’s very challenging and not always straightforward. I’ll also say , however, that we are treating our UC and Crohn’s patients more similarly these days. While most people hear Crohn’s and associate this with a worse diagnosis, we all know Crohn’s patients who are very mild, and UC patients who are very sick.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohns and I am suffering immensely from the extra-intestinal manifestations that are presenting themselves as erythema nodosum and joint pain, and most painfully - Achilles Tendonitis. I haven't seen much information regarding Achilles Tendonitis linked to Crohn’s flares. Can you offer any insight and recommendations for relief?
A: Yes, Achilles tendonitis can be an extra-intestinal manifestation of IBD. It’s also known as enthesitis, which we often treat like other EIMs, but musculoskeletal EIMs are the most common but often difficult to treat, which is why we usually enlist our rheumatologists to help us.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I have been given mesalamine enema and 4 mesalamine pills daily. It has only been one week since my diagnosis and medications, how long before I start seeing a more normal stool? Now my stool is water and sometimes droplets of blood. I am going to the bathroom about 5 times a day, this is how frequent I was going before as well.
A: Usually we give this a few weeks, but I would say that mesalamine should start to work within a few days. If it does not work, some people have the opposite effect (makes their diarrhea worse) or your colitis may just be more severe that the mesalamine is not enough. The latter is usually what happens. This is when I’d be starting to discuss potentially needing the biologic therapies if you are not doing significantly better on the mesalamine.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I was diagnosed with Crohn's colitis in 2009. After several good years on Remicade, despite maximal dosage, the drug has now failed. After about 6 months on Xeljanx, that drug has now failed as well. My GI thinks it is time for me to seriously consider colectomy. I am having a tough time with this idea. How do I decide if it is worthwhile to try Entyvio or a clinical trial. What information can you share that can help me make the best decision?
A: There are other medications that you can try. Since you responded to remicade initially, adalimumab (humira) and certolizumab (cimzia) is a choice. Keep in mind that there is vedolizumab (entyvio) and also ustekinumab (stelara), in addition to clinical trials. So, there are a lot of choices out there to consider. Surgery is reasonable to consider, depending on how sick you are, but you should talk to your doctor about other non-surgical choices above.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: My adult son has Crohn’s disease and now into his 5th year of remission on Remicade. He is 23 and has been offered a job outside of the US. He is seeking recommendations/suggestions on alternative treatment that doesn't require IV. He is seeking other options that may allow him to freely travel without infusions every 8 weeks. Any information is on the pros and cons of switching medication or other suggestions is appreciated.
A: If he is able to get Remicade outside of the US, that would be ideal. I have had patients in this scenario. Alternatively, you can switch him to Humira, which is in the same class. Finally, if he’s doing very well, you may want to consider doing a colonoscopy with your GI doctor to see if he can de-escalate off of remicade. This may or may not be appropriate as I don’t know his IBD history fully, but your doctors should be able to help you to trouble shoot this, as it’s a common scenario.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohn's and have tried several medications, and none have seemed to help. My doctor is discussing the use of a biologic treatment. What is the best way to determine which biologic treatment to use?
A: There isn’t a clear winner with the different biologics. I would say that it depends a lot on what your insurance will cover, and where your Crohn’s disease is located. If you are not doing well on the other medications, then I too would recommend biologics, and all of them would likely be better than what you are doing now. The Crohn’s and Colitis Foundation has a great web site where they discuss all of the different medications, but your doctor should hopefully steer you in the right direction.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: What has been the success or failure of stem cell treatment for ulcerative colitis? How do I find stem cell clinical trials for the treatment of UC that are actively recruiting?
A: The data for stem cells is more common in Crohn’s disease, which overall studies have shown slight or no benefit, which is disappointing given the initial potential. I am not aware of many studies in UC. While this is still a promising field, the good news is that we so many more therapies for UC that are being tested, and we are understanding the safety issues better as well.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter?
A: Please note - nuts and seeds do not increase inflammation or worsen colitis. They are great foods that have fiber, healthy fats, protein, and antioxidants. That said, during a flare the whole food forms may be harder to digest or feel a little irritating to the GI. So the modified texture such as smooth nut/seed butter (almond butter, sunflower butter, cashew butter, etc) or milks (coconut milk, hemp milk, etc) can definitely be more conducive during periods of inflammation. Make sure to reduce added sugars, processed oils, and additives such as carrageenan when choosing nut/seed butters or milks.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
November 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: My recommendations for patients who have both constipation and narrowing of the GI are the following: 1) Slow down and chew your food well. 2) Drink enough liquids (ideally water) while eating. 3) Modify textures, especially when it comes to fiber. Therefore, cooking, liquefying (smoothies, soups, etc), grinding, pureeing, or finely chopping can help boost fibrous foods without making matters worse. 4) Spread out your fiber throughout the day. 5) Move after meals to aid digestion. Ideally, walk 5-10 minutes after bigger meals. 6) Make sure you are squatting on the toilet to aid proper evacuation of bowels and reduce straining. You can use something like the Squatty Potty, but it can also be a simple step stool. 7) Consult a dietitian. There may be supplements or other specific suggestions that can help you. Constipation varies patient to patient, so I may use magnesium, fiber supplements, abdominal massage, or coffee to stimulate bowels, to mention a few, but it may not be favorable to everyone.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
October 2019
Q: Tengo la enfermedad de Crohn y me gustaría saber si está bien tomar probióticos. ¿Hay algún riesgo de tomándolos junto con mi medicación habitual de Crohn? (I have Crohn’s Disease and would like to know if it is ok to take probiotics. Are there any risk of taking them along with my regular Crohn’s medication?)
A: Si bien no se ha demostrado que los probióticos sean adecuados como tratamiento de Crohn, algunos pacientes notan un beneficio de los síntomas al tomarlos. No hay riesgo de tomarlos con la medicación habitual de Crohn. (While probiotics have not be shown to be adequate as a Crohn’s treatment, some patients notice a symptom benefit with taking them. There is no risk to taking them with your regular Crohn’s medication.)
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I have 30+ year history of Crohn’s Disease. I have been on Humira for last 8 years with deep remission. I now have excessive and sudden joint stiffness and pain along with minor skin rashes. Can this be related to the medication or just another possible autoimmune issue?
A: Either one is possible. It could be the medication or another new autoimmune issue. I recommend consulting with a dermatologist and rheumatologist to discuss this and start an evaluation together with your gastroenterologist.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I have UC and have recently been prescribed uceris rectal foam to manage a flare up. I am supposed to take the med for 2 weeks. I am also breastfeeding my newborn. Is this medication ok to take while breastfeeding?
A: Yes, it is. The absorption of uceris topical foam is minimal. Of what is absorbed, most is broken down by the liver and very little will every make it to the blood stream or the breast milk.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: How long is it safe to stay on budesonide? I have lymphocytic colitis, and every time my doctor had me taper off my symptoms came right back. Now he says I may need to stay on it indefinitely. What are other treatment options for lymphocytic colitis?
A: While the systemic steroid exposure is low, there are some adverse effects of long-term budesonide treatment, the main one being adrenal gland suppression. Some patients also experience some other steroid side effects, such as poor sugar control in diabetics or irritability. Budesonide’s use is safest when limited to 12 weeks. The return of symptoms is of course a limitation. If long-term budesonide use is planned, use should be accompanied with discussion of risks and benefits and using the minimum effective dose that controls symptoms (while we start at 9 mg, many patients can taper to 6 mg or 3 mg if remaining on the budesonide). Another option is to use intermittent recurrent courses of budesonide if able. Some other tips include discontinuing any culprit medications (such as non-steroidal anti-inflammatories), adding loperamide or cholestyramine to the regimen or adding bismuth subsalicylate. Other options (based on small case series) for long-term maintenance treatment of lymphocytic colitis are biologic agents (anti-TNF like infliximab or adalimumab) or immunomodulators (such as azathioprine).
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with ulcerative colitis in 2016. In a recent colonoscopy there was no ulcers and no inflammation found. I am presently on mesalamine, gained a lot of weight and still have 4-5 soft bowel movements a day. If I have no ulcers and inflammation why do I continue to have so many bowel movements?
A: Other causes for the frequent bowel movements could be lactose intolerance, a motility disorder in the GI tract, or an infection, or celiac disease, among others. A work-up could be started especially if this affects your quality of life. Sometimes there is some scarring in the recovered colon and that could result in continued frequent bowel movements.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My wife and I are trying to conceive. I have UC, have been on mesalamine 4.8g for years with no flares. Got a flare about 2 1/2 months ago and have been taking prednisone 40mg to help. I was told I will need to switch to a biologic in coming weeks. Is there any issue with trying to conceive while taking the prednisone and soon the biologic?
A: No. There are no issues in men and you can try to conceive while taking prednisone and biologics. Avoid the medications: methotrexate and sulfasalazine for 3 months as they can affect/lower sperm count. Otherwise for men, it is okay to start a biologic with the eventual goal of tapering off the prednisone soon. Women should not try to conceive in a flare due to the risks of active inflammatory bowel disease to the pregnancy.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My daughter was diagnosed 11 years ago with Crohn’s disease. She has been in remission without meds for the last five years. Recently diagnosed with recurring anterior uveitis and burning tongue. A new GI Dr and had all the tests done again and diagnosed she was diagnosed with mild to moderate Crohn’s. There was no discussion on previous meds that helped the doctor just said we treat Crohn’s from the top down now, and he wants her on adalimumab. Is top down the way of future treatment?
A: It is true, an aggressive treatment approach and starting with biologics in a top-down approach has been showed to help Crohn’s patients more than the step-up approach in moderate-severe Crohn’s. This minimizes the long-term disease complications. The choice of adaliumumab its reasonable because it is a treatment for uveitis as well as Crohn’s, however, other findings such as colonoscopy results, severity of symptoms are important in order to make this decision and estimate the risk of Crohn’s.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with Crohn's 10 years ago and on the Remicade right now. But when I have a flare ups, Pentasa works great to calm down symptoms. I asked my doctor to prescribe Pentasa and he said that this medication is absolutely NO for Crohn's (only for Colitis) according some sort of recommendations. What is the harm in taking Pentasa with my Remicade for CD if it works to reduce my symptoms?
A: Pentasa and other 5ASAs have not been showed to have a benefit in achieving remission in Crohn’s studies/clinical trials. These studies were all pooled together and still there was no benefit. While pentasa does not suppress the immune system, and is overall safety profile is good, it has side effects like nausea/headache/rash/ and other rare side effects (such as pancreatitis, pericarditis, nephritis). It is a good practice to make sure that every medicine you take is truly needed. That said, I encourage a discussion with your doctor regarding the definition, duration, and severity of flares that you experience and based on the nature and frequency of the symptoms you can together decide if additional work-up is needed to define them better. This might help guide how you treat them.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
September 2019
Q: My 12-year-old son was diagnosed with UC/pancolitis in March 2018. He is trying different meds.He says he has constant stomach pain. Sometimes it is worse than other times, but it never fully goes away. A lot of the time he does not want to go to school because of fatigue and hurting but then he will cut up with friends and play xbox in his room. This disease is new to both of us and I am trying to understand what he is going through. How can I best support him?
A: I think the most difficult aspect of treating any patient (but especially children) with a new diagnosis of UC is allowing time for the patient to understand that UC is a chronic illness and that any treatment will take time to work. For a patient with a relative new diagnosis, this is the first time they haven’t felt better quickly after seeing a doctor. For most, patients see a doctor for a more mild ailment and it’s a quick fix with an antibiotic or a tincture of time. With UC, every treatment takes time to start working. For your son, I would suggest supporting him through the abdominal pain with comfort foods that don’t increase his GI symptoms and rest (reading, meditation, even video games) for his body to start to heal. I would also focus on the fact that despite his current symptoms, he will get better over time. Although the disease is life long, most patients return to their activities and “forget” they have UC. I would also suggest that you look into your local Crohn’s and Colitis chapter and see if there are parent or peer mentors for the both of you. Sometimes, hearing what other parents had to go through and techniques they used can be very helpful. Some pediatric hospitals also have peer mentors that the children can get in touch with, whether electronically or in person. Finally, I find it very helpful for patients who have been newly diagnosed to speak with a behavioral specialist (psychologist) as they can offer a variety of helpful coping skills for when the disease is active.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 13 old son was diagnosed w/mild case of Crohn's a year ago. Pentasa is not working for him and the Dr wants him to go on a biologic. Entyvio seems safest from what I have been reading. Can children be on Entyvio or should another biologic be tried first?
A: Great question! This is a really important question and one that does not have a straight-forward answer unfortunately. The short answer is, we just don’t know. The anti-TNF medications (infliximab and adalimumab) are the only FDA-approved biologics for pediatric patients with moderate-severe Crohn’s disease. Use of any other medication, like Entyvio, is considered off-label use. Entyvio is FDA-approved for adults with ulcerative colitis and Crohn’s disease. With that said, pediatric gastroenterologists have been asking the same question, “is there a certain group of children/adolescents that would benefit from Entyvio as their first biologic?” We don’t have the answer yet. There is some data to support that this could be a good option for some patients and I would encourage you to have this discussion with your primary GI physician.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 12 year old daughter was diagnosed with UC, with high grade dysplasia in her colon and low grade dysplasia in her small intestine. She started Prednisone and mesalamine 6 days ago. After consulting with other adult doctors, they have recommended she start Humira or Remicade. Both of these drugs seem pretty serious but is one preferred over the other. They want to scope her again in 3-5 months. Does dysplasia usually go away when the inflammation is reduced?
A: Only infliximab (Remicade) is FDA approved for pediatric UC. Adalimumab (Humira) is FDA approved for adults with UC, however, Humira is often used off-label for pediatric UC. Depending on the severity, Remicade is often preferred given its relative quick onset of action. If your daughter is admitted to the hospital, then Remicade is the preferred biologic. Both medications have a good safety record in children. In regards to the dysplasia question. This is relatively uncommon in children, especially at diagnosis. I would agree with close surveillance. I would also suggest that the biopsies be reviewed by a either a pediatric or adult pathologist who is an expert in intestinal dysplasia to confirm the diagnosis.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
August 2019
Q: I recently started Imuran. What preventive measures do you recommend on this drug to help avoid infectious risk? I fly a lot. Should I wear a mask on the plane? I work in a busy family practice medical clinic. Should I change my job if that is an option to avoid so much viral exposure?
A: The best way to protect yourself from infections is with prevention and optimization. First, you should make certain that your non-live vaccines are up to date – flu shot annually, pneumonia vaccine series, hepatitis A and B. As you are on immunosuppression, you cannot receive live vaccines like measles/mumps/rubella, yellow fever vaccine, chickenpox vaccine series. The second mode of prevention is through appropriate protective measures especially during cold/flu season. Hand hygiene and safe food handling practices are important. Being on immunosuppression doesn’t require extreme measures of caution during travel – but practical tips include bringing disinfecting wipes, hand sanitizers, etc to use as needed. You should wear a mask during travel or work if you have cold/flu symptoms as you don’t want to put others at risk for infection. Many people living with Crohn’s and Colitis work within the health care industry, If you work in the health care profession, wear appropriate face shields, eye protection as recommended based on a case by case basis.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s in January 2019. Starting in February my tongue has been white. I was checked for thrush and it came back negative. My dentist told me to use a tongue scraper but that doesn't seem to be helping. Can thrush be related to my Crohn’s?
A: Thrush is typically associated with a fungal infection that may be related to immunosuppression, particularly steroid use. I would discuss your symptoms with your health care provider as medications, dry mouth, or potentially related to IBD but other causes may be more common.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I’ve had ulcerative colitis for over 20 years. Years ago, I tried Asacol and had an allergic reaction have been told I am allergic to the main ingredient in most uc drugs. I am currently on budesonide and mercaptopurine. I was wondering if some of the new drugs in shot form are safer than steroids. I want to get off long term use of steroids and don’t know the name of the new drugs to ask for.
A: Steroids are associated with the greatest risks of infection, bone loss, and other complications related to ulcerative colitis, particularly with chronic and longstanding use. You are correct to want to taper off prednisone. IF you are steroid-dependent, then mesalamines (which include Asacol) are not likely to be the medications to keep you off steroids, especially with an adverse reaction as you have experienced. The injectable or infusion-based medications you are referring to are called biologics – these are protein-based medications that are used for people who are dependent on steroids or with moderate to severe disease. These agents can induce and maintain resmission (resolution of symptoms, ideally with healing of the colon) and provide the opportunity for people to taper off steroids. Examples include infliximab (Remicade, Renflexis, Inflectra), adalimumab (Humira, Cyltezo, Amjetiva), golimumab (Simponi), vedolizumab (Entyvio). You should discuss potential options with your IBD provider.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s last year. A year after diagnosis months I had a huge flare. My doctor has recommended Cimzia. I have begun treatment (week zero and week 2 injections complete) but looking for insights on this drug. Due the flare I am also taking prednisone. I am experiencing a lot of night sweats and fever spikes. Can these be symptoms of the prednisone or Cimzia?
A: These symptoms can be related to either continued Crohn’s disease activity, medication related adverse effects or infections. Please discuss these symptoms, especially if new since starting certolizumab pegol (Cimzia) and have a plan to assess response or non-response to the agent within 8-12 weeks of starting treatment. If you are unable to taper off prednisone or do not see notable improvements, then you and your provider should re-evaluate to see if this is the right medication and the right dosing at the right interval. If you are having any adverse reactions to the medications, then your provider also needs to be aware.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have UC for 5+ years under control/remission however had a flare up a few months ago and I’m now taking Prednisone to calm it down which is working. I would also like to try CBD oil since it supposed to help reduce for inflammation. What does the research say about the benefits of CBD with UC?
A: This is certainly an area of interest and need for further investigation. The best studies evaluated the effects of cannabis for Crohn’s disease and did not show consistent meaningful results. We do know that certain symptoms of nausea, decreased appetite, potential fatigue/pain may be improved with cannabis, but there isn’t enough evidence-based data to support the use of CBD oil as a primary treatment for ulcerative colitis.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have a long history of Crohn's disease (originally diagnosed as Ulcerative Colitis 46 years ago). In the past, I've been on Sulfasalazine, Acacol, Cimzia, Humira, Remicade. Currently I'm on Stelara every 2 months, and it's the best by far. However, the cost is prohibitive. I'm hitting a $1,000,000 lifetime health insurance benefit cap this year at age 60. Is it possible to take Stelara less often (once or twice a year) and take something cheaper in between shots?
A: Unfortunately, the data for using ustekinumab (Stelara) for Crohn’s disease is based on dosing every 8 weeks. Extending the interval longer in between injections increases your risk for loss of response, flares and potentially forming antibodies. You should discuss options to help with the costs of obtaining the ustekinumab (Stelara). There are patient assistance and savings programs that may offset some of the costs of the medication.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
June 2019
Q: I have been on infliximab for about 3 months and my hair been coming out and has become really thin. Can this be as a result or the medication or something else. What can be done to stop the hair loss?
A: Hair loss can be a rare side effect of anti TNF agents like Infliximab and it is considered a class effect. If you were very ill with nutritional deficiencies and emotional stress prior to starting Infliximab, there can be hair loss during recovery which will resolve with time. This is called Telogen effluvium is a form of diffuse, nonscarring hair loss that presents as a transient or chronic loss of hair. Hair loss in telogen effluvium occurs because of an abnormal shift in follicular cycling that leads to the premature shedding of hair. Best is to consult a dermatologist, who will be able to do further investigations to find the cause and decide on treatment options including considering discontinuing of Infliximab.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed in 1997 with large bowel Crohn’s. I have been on it all, and have only been in remission a few times, not very long. Recently, my doctor told me my disease had inactive Crohn’s and he is saying it is IBS with my Crohn’s. How can I be inactive, if I have massive diarrhea 4-5 hours a day every day? What is inactive Crohn’s?
A: Disease activity is related to inflammation. It is usually evaluated by endoscopy with biopsies or radiologically with CT or MRI of abdomen/pelvis. Disease activity dose not corelate well with patient symptoms in IBD. This discrepancy is more pronounced in crohn’s disease compared to ulcerative colitis. Therefore, you can be symptomatic but have inactive crohn’s disease. In other words, GI symptoms in crohn’s disease does not have to be due to active inflammation. If your disease is inactive, then adjusting crohn’s medications does not going to help with controlling your symptoms. In this situation it is important to look for other reasons such as infections, bile salt diarrhea, lactose intolerance and functional GI/IBS like symptoms. Other possibility is celiac disease as its incidence is slightly higher in IBD patients compared to general population.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I have had the diagnosis of Crohn's Disease since 1992. In the past 10 years or so, I have had occasional iritis when my Crohn's is flaring. My GI doesn't seem to be concerned, but my optometrist is worried about using steroids too much on my eyes and that it might cause glaucoma. How concerned should I be about using steroid drops on my eyes every 3-6 months?
A: Uveitis occurs in 0.5 to 3 percent of patients with IBD. Anterior uveitis is also called iritis. Uveitis may precede diagnosis of IBD and may be associated with arthritis. It is four times more common in females as compared with males. Prompt diagnosis and therapy with topical or systemic steroid is necessary. Secondary glaucoma and rarely blindness may occur if management is delayed. The course of uveitis usually does not parallel the activity of IBD. Therefore, I would recommend you get evaluation by an ophthalmologist as soon as possible to confirm the diagnosis. I don’t know the exact risk of glaucoma related to topical steroids but likely it is low. This may be episcleritis which occurs during flare of intestinal IBD activity. Episcleritis, inflammation of the episclera, the layer directly beneath the conjunctiva, is the most common ocular manifestation of IBD, occurring in 2 to 5 percent of patients. If that’s the case and this happens every 3-6 months, that is an indication of suboptimal control of your crohn’s disease. That means your current medication regimen needs to be adjusted to better control the disease. This may require checking the drug level if you are on a biologic or consider switching to a biologic if you are not on one. Of course, infection needs to be ruled out but less likely due to repetitive nature.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed with UC in May of 2018. I am 21 and spent 4 weeks in the hospital in August 2018 with a severe flare up. After being on Prednisone, starting Humira, etc. I have not had a period in several months. Is this normal? I am on Amatiza for constipation and I also diet(Keto). I am also experiencing a lot of anxiety from all of this. Could the medication or the diet be the reasons why I have not had a period in months?
A: During acute illness and recovery menstrual cycles can be irregular or missing. This is commonly related to functional hypothalamic amenorrhea/absence of cycle due to acute illness, weight loss or nutritional deficiencies. Sometimes resolution of acute illness, correction of nutritional deficiencies or gaining the weight do not correct the menstrual cycle irregularity. Did you lose > 10% of your body weight due to keto diet, which may be the reason for absent menstrual cycle. Pregnancy needs to be ruled out and should also look for other causes like thyroid dysfunction or celiac disease. If these are absent recommend discussing with your PCP and gyn.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed with lymphocytic colitis in December. Prescribed Urceris, (budesonide 9mg) for eight weeks, then tapered to 6mg for two weeks, and now on 3mg. All symptoms have returned and my doctor said to go back to 9mg for 12 more weeks. I'm worried about so much corticosteroid usage. Is this truly safe for such a long period of time?
A: You are taking Entocort 3 mg pills, which the effective form of budesonide for microscopic colitis (lymphocytic colitis and collagenous colitis). Uceris is the formula that is mainly released in colon and it comes as 9 mg pill. Entocort is a locally active corticosteroid that has been used in patients with microscopic colitis, a study in 2018 confirmed its efficacy compared to placebo in lymphocytic colitis. As Entocort is locally acting and its systemic side effects are less than other oral corticosteroids like prednisone. This is due to its extensive breakdown in liver resulting decrease systemic exposure. Therefore, this is the safer form steroid. Although there is symptomatic improvement in symptoms with few days of therapy complete resolution needs at least 6- 8 weeks of Entocort 9 mg daily followed by taper over 1 month. If there is relapse of symptoms during taper, 9 mg daily treatment can be extended into 12 weeks or longer before tapering. Your treatment recommendation is the standard of care. We need to also make sure to eliminate triggers such as smoking and NSAIDs use as well as infection, celiac disease, hyperthyroidism, etc. Even after elimination of other causes and triggers, about 10-20% of patients may not respond to Entocort. In these patients it may be necessary to use immunomodulators like azathioprine or biologics such as anti TNF agents (Infliximab, Adalilumab, etc)
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: Just diagnosed with moderate Crohn’s disease in small bowel with narrowing in terminal ileum. My main complaint is abdominal pain. The doctor wanted to put me on 40 mg of Prednisone for 2 weeks but I’m a chicken (ha) so I choose Entocort. It’s been 5 days and I still have horrible stomach pains and some back pain. Can I switch over to prednisone without problems?
A: Degree of response to medicatherapy of crohn’s stricture/narrowing depends on amount of active inflammation vs scarring/fibrosis. Current medical therapy is not effective against fibrosis but will decrease inflammation resulting in opening/decreasing the narrowing of your terminal ileum. Entocort 9 mg is usually very effective but you can try switching it to prednisone to see if you have better response. I would also recommend obtaining abdominal imaging such as CT enterography or MR enterography to better define the extent (more stricture event tight ones) and severity of small bowel disease. If it is moderate disease you will benefit from biologic therapy with or without immunomodulator to induce remission and maintain remission. Staying on low residue diet will also decrease your abdominal pain if it is related to sluggish passage of material through the narrow terminal ileum. If you have critical/severe narrowing with dilation of bowel before/proximal stricture, you may need surgical intervention in near future.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed with Crohn’s in 1998 and then diagnosed with fistulizing Crohn's in 2000 after a major surgery. I started Remicade in 2001. It has kept me in remission and fistula free until last year. I recently became aware that for the past year I have been getting Inflectra, not Remicade. Could this change in medication contribute to the development of fistula? Is there any research about the changes patients have when switched from the original biologic to a biosimilar?
A: There are multiple studies showing equal efficacy of Inflectra to its originator Inflximab. More important question in your situation would be the adequacy of the drug level as well as presence of antibodies against the drug. I would recommend performing therapeutic drug monitoring to get this information if this has not been done before. When was the last time you had colonoscopic evaluation or abdominal imaging to objectively assess the treatment response while you were still on Infliximab? If it is few years ago, it is possible you had partial controlled disease for some time (while you were on Infliximab) prior to developing the new fistula. If this is the case as mentioned before, therapeutic drug monitoring will help you to figure out what could be the best possible therapeutic change to get your disease under control again. If you have perianal fistulizing disease, MRI of rectum will better define the disease and examination under anesthesia with seton placement will facilitate the healing with correct medical therapy.
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Lilani Perera, MD
Gastroenterologist
April 2019
Q: My Crohn’s Disease onset occurred when I got pregnant in 2013. Since the diagnosis and treatments I've noticed my flares almost always coincide with my menstrual cycle. Whether small pains or complete bowl obstruction flares, trouble times are always just before or occurring with my bleeding. Is this just me or is this a known factor?
A: In general, women may experience gastrointestinal symptoms around the time of their menstrual cycle. Multiple studies have been done comparing patients with IBD to patients without IBD and all groups experienced an increase of gastrointestinal symptoms around the time of their menstrual cycle. Importantly, if you feel your symptoms are consistent with a flare, speak with your doctor to run additional tests (such as blood or stool tests) to confirm this. If confirmed, then you and your doctor can discuss modifying your therapy to account for inflammation. Consider reviewing the Crohn’s and Colitis Foundation Women and IBD Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/womenfactsheet.pdf).
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I have had resolving ulcerative colitis for several years; It is kept in check mostly through Asacol, then Lialda, and now generic mesalamine. Since switching to the generic, I have had very frequent burping, at times almost constantly. I have tried taking the medicine at a different time and with a full meal, and nothing seems to help. I know this is minor considering what some people deal with, but is there anything I can do to help with the burping?
A: Increased belching has been reported with oral mesalamine usage, so your symptoms may be related to the medication. However, if you are clinically doing well with this, then I would not recommend stopping your medications. You may consider speaking with your doctor about taking another formulation, if you did better with those. In general, excessive belching can be caused either by an increased swallowing of air with eating and drinking or may be related to underlying reflux. I would recommend seeing your gastroenterologist, who will likely take a careful history to help determine the etiology for your symptoms. Unless specific symptoms are present, you will not likely need further invasive testing, such as an endoscopy. In terms of management, this is guided by the reason for the symptoms, which may include behavioral changes (related to swallowing air), discontinuation of specific foods (for example, carbonated drinks and chewing gum) or if reflux is suspected medications directed at this. Consider reviewing the Crohn’s and Colitis Foundation Mesalamine Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/aminosalicylates.pdf).
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I have been using Remicade treatment for 5 months. I have been getting skin ulcers, or boils since beginning use of this form of treatment. These not only look nasty but are very painful. This is my third skin issue. Is this a common side effect?
A: Remicade, though very effective for the treatment of IBD, has many potential side effects, including skin side effects. Up to approximately 10% of patients, may experience some form of skin related side effects, including rashes and itching. Of the skin related issues, development of psoriasis appears to be the most common. In your case, I would recommend promptly speaking with your gastroenterologist and possibly seeing a dermatologist for further care. In mild cases of psoriasis, the Remicade is continued and topical creams are used to control the skin related side effects. In more severe cases, Remicade (and related medications) are stopped and alternative therapies are used.
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I started Azathioprine 50 mg 2x daily about 30 days ago. Last week I started experiencing stomach bloating, gas, pain between my breast and then sharp pains on left side, radiating to my back and up to my shoulder. I stopped taking the pills, called doctor and visited about pancreatitis symptoms. Is this a side effect? Should I try again? I am on Remicade every 8 weeks and the inflammation continues.
A: With azathioprine, pancreatitis is a rare, but reported side effect. This does not appear to be related to the dose of the medication, but instead an idiosyncratic occurrence. If pancreatitis was confirmed, I typically do not resume azathioprine (or 6-mercaptopurine), as the patient may have recurrent episodes. Alternatively, a growing body of studies suggests monotherapy with Remicade (and other biologic therapies) dosed adequately is as effective as combination therapy (Remicade and azathioprine). Therefore, in patients unable to take azathioprine, I typically would recommend monotherapy with a biologic, such as Remicade, and checking the drug concentration to guide dosing.
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I recently started Entyvio and realize that it will take a while for it to kick in. In the meantime, my doctor's office suggested Metamucil to help add bulk to my stool which is currently just liquid. I have always been careful to avoid too much fiber and I am concerned that the Metamucil will cause more diarrhea and not less.
A: Fiber, or said another way, dietary fiber is actually composed of 2 types of fiber, soluble and insoluble fiber. Soluble fiber, such as the psyllium found in Metamucil, dissolves completely in water and forms a gel like consistency. When ingested, this helps add bulk to stool and soften stool, so it may be recommended for both diarrhea and constipation. Insoluble fiber, which is the type of fiber found with wheat and some fruits and veggies, does not dissolve well and also adds bulk to stool, but may also have a laxative effect. When adding additional fiber to the diet, start slowly at first (perhaps ½ tablespoon initially), as some supplements may cause bloating and abdominal pain, and then increase gradually as tolerated for the desired effect. For additional information related to fiber, consider reviewing the Crohn’s and Colitis Foundation Diet and Nutrition Handout (https://www.crohnscolitisfoundation.org/assets/pdfs/diet-nutrition-2013.pdf).
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I have Crohn’s and I just had surgery to drain an anal abscess. There was a fistula, so they placed a seton. What is the treatment for fistula? Are setons permanent? Can fistula heal with medication, like Remicade? My main concern is bowel continence.
A: Unfortunately, patients with Crohn’s disease may develop fistulizing disease around the anus, also termed peri-anal disease. This can lead to complications such as abscesses, which require prompt recognition and management. Overall, treatment of Crohn’s disease with peri-anal involvement involves close coordination between your gastroenterologist and colorectal surgeon. Once the abscess has been drained, a seton is left in place to prevent accumulation of a new abscess. In the meantime, your gastroenterologist may use a combination of therapies (including biologics and antibiotics) to gain control of the inflammation that led to formation of the fistula. Once this is controlled, the seton can be removed and your team will monitor you for improvement and closure of the fistula tract with medications. In cases where the fistula tract dose not close, then additional surgical interventions may be required, with the goal of closing the tract and preserving continence.
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: Have been taking Pentasa (mezalazine) for 30 years with no problems but am now experiencing very bad light sensitivity. Even with spf 30 cream getting extreme redness, burning, tingling and swelling. Happens even indoors when in the light. Could it be my tablets causing this?
A: Skin reactions are a rarely reported side effect of mesalamine products, including Pentasa. However, since this is a rare side effect not much has been reported. In a study from the UK, nearly 3 million prescriptions of mesalamine were written and only 14 cases of skin reactions were reported. I would review with your primary care physician and gastroenterologist all your medications, in case another medication is the culprit. If no other medication causing this side effect is found, I would discuss with your gastroenterologist alternative therapies or possibly seeing a dermatologist for further recommendations. In general, patients with IBD should practice skin care and regularly use sunscreen for protection.
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Rajesh Shah, MD
Gastroenterologist
March 2019
Q: I was diagnosed last year with CD. I was started on infliximab and had a handful infusions since December. I've gone thru some side effects including intense urinary pain. I've had UTI's more times than I can count. Are urinary issues a common side effect after starting treatment?
A: Urinary symptoms are not a common side effect of infliximab. Infliximab does suppress the immune system and, therefore, you would be more susceptible to infections (including urinary tract infections). However, your frequency of UTI’s since starting infliximab sounds more than what I would expect to see on infliximab. I would recommend checking with your care team to see if there is anything contributing to the frequent urinary tract infections. There may also be measures that you can take to prevent them from occurring this frequently moving forward.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
March 2019
Q: I have had Crohn’s since 2001 and have been managing it well for 6 years with infliximab. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the medication be wearing down my immune system? Should I talk to my doctor about switching from infliximab to another drug?
A: Infliximab does suppress the immune system and, therefore, makes you more susceptible to a variety of infections (including strep throat). This immune suppression is why infliximab works against Crohn’s disease, but infections can be a side effect. However, you also mention that your Crohn’s disease is managing well with this medication. This makes stopping infliximab a complicated and individual decision. With a switch in medicine, there is a risk of a Crohn’s flare. For that reason, when infliximab is working well, I am hesitant to recommend stopping it unless it is causing side effects that the patient can not tolerate. This is where your care team comes in to help guide you through an honest discussion of the risks and benefits of continuing on this therapy versus switching to an alternative medication. Once you have all of the information, you can decide together what would be best for your individual case.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
March 2019
Q: I was diagnosed with Crohn's disease 15 years ago. Does CD affect fertility? I was also wondering if there has there been any research done about the long term use of biologics and how they can affect fertility. I’m 32 and have been on a biologic for 12 years and can not get pregnant.
A: Thank you for this great question. There have been several studies looking at fertility in Crohn’s disease and ulcerative colitis. When Crohn’s disease is in remission (no inflammation remains), there is no sign of decreased fertility. Biologic medications have also never been associated with decreased fertility. There are studies showing a decreased birth rate in Inflammatory Bowel Disease patients. However, researchers took those studies a step further and investigated the reason for the decreased birth rate. They found that the Inflammatory Bowel Disease subjects studied more frequently did not desire a pregnancy compared with the non-IBD subjects. Once they narrowed the studies to subjects who desired pregnancy, there was no decreased fertility among all groups. That said, there are a few individual situations that could impact fertility. If you have had surgery for Crohn’s disease, it is possible that adhesions (or scar tissue) could affect your fallopian tubes. If you have active Crohn’s inflammation, there could also be associated inflammation or scarring of the fallopian tubes. Finally, some medications (not biologics) have been associated with decreased sperm count in male patients – but that decreased fertility is not seen in female patients.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
March 2019
Q: I was recently dx with CD. I have inflammation in my ileum and also some scar tissue. I am torn about treatment. I cannot decide if I want to take the either HUMIRA, Remicade or another treatment. I worry about the side effects. My other option is laprascopic surgery to remove the diseased area. Surgeon said that I would have a good 10 years of normal eating and may not have to take the meds. I am looking for any information on how to proceed or that can help me make a treatment decision.
A: The question of medications versus surgery can be a common situation that arises. The right answer is often very individual depending on your situation. If the problem area in your ileum is mostly scar tissue, then medication may not be able to open it up enough to relieve your symptoms. In that case, surgery is the necessary intervention. However, if there is a large component of the area that is inflammation, then medication may be able to lead to a very significant improvement and prevent or delay any surgeries. Calming down inflammation prior to surgery often also allows the surgeon to limit the amount of intestine resected and improve your healing from a surgery. While hearing the long list of possible side effects is often alarming, it is important to remember that the risk of untreated Crohn’s disease is greater than the risks of these medications. Most people tolerate the medications very well. Finally, I would say that the course after surgery can vary greatly. Remaining off therapy for 10 years is possible, but not the most common outcome. More commonly, Crohn’s disease can begin to return and require treatment at some point after surgery. Guidelines recommend repeating a colonoscopy 6-12 months after surgery to begin monitoring for return of Crohn’s disease.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
February 2019
Q: I have had chronic diarrhea for at least 20 years. I’ve had 3 colonoscopies all normal other than internal hemorrhoids, but recently had an acute bowel perforation without any new symptoms and diagnosed with Crohn's. I have not yet started medication therapy, but I am trying to limit diet. How do I know what is working when some days I have no or solid BMs and then all of a sudden urgency and loose BM? What is considered a flare? How will I know when I am in remission?
A: Thank you for your question. A bowel perforation and a new diagnosis of Crohn’s disease is a tough ordeal. By saying you are “trying to limit diet,” I imagine you mean that you are attempting to treat your Crohn’s disease by adjusting your diet. Unfortunately, no specific diets have been adequately evaluated to prevent or treat Crohn’s disease. I don’t know the exact circumstances of your case but if you were first diagnosed with Crohn’s disease after a bowel perforation, that may suggest that your disease needs to be closely monitored and possibly treated to prevent recurrence. I encourage you to speak to your gastroenterologist regarding testing that can be done to evaluate the activity of your Crohn’s disease at this point. This may include labs, imaging, and/or colonoscopy. A flare in Crohn’s disease may be associated with diarrhea, fever, abdominal pain, and/or nausea/vomiting. These symptoms will vary depending on the location of the Crohn’s disease in your intestine and the degree of inflammation. Ideally, remission is a combination of absence of symptoms and resolution of active intestinal inflammation.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: This year will mark 10 years with ulcerative colitis. After being prescribed numerous amounts of medications with different side effects I decided to take a different approach and try things more natural. I ended up regaining control of my symptoms until recently but now I am looking into other forms of treatment other than pills. Does acupuncture help with symptoms?
A: The efficacy of alternative treatments in ulcerative colitis is a frequently asked question. Acupuncture may help patients better tolerate their ulcerative colitis symptoms, but at this point, there is no evidence that acupuncture helps decrease active intestinal inflammation. Since our goal with any treatment (i.e., remission) in ulcerative colitis is to decrease active intestinal inflammation in addition to eliminating symptoms, acupuncture on its own may not achieve the results we would like. However, if combined with other therapies that have been studied and found to cause remission in ulcerative colitis, acupuncture may be a better choice.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I’ve had Crohn’s since 2001 and have been managing it well for 6 years with Remicade. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the Remicade be wearing down my immune system? Should I talk to my doctor about switching from Remicade to another drug?
A: This is an interesting question. Medications such as infliximab (Remicade) are associated with a higher risk of bacterial infections like those that cause strep throat. As you suggested, this is because infliximab decreases the immune systems’ ability to fight off infections. If the diagnosis of strep throat has been made adequately on each occasion and you have been on appropriate antibiotics in each case, then it may be time to speak to your gastroenterologist about the role infliximab may be playing in the infections. At that point, your gastroenterologist can decide on the next best step for the treatment of the Crohn’s disease.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I have recently been diagnosed with Crohn’s disease involving distal ileum, few aphthous ulcers in mid and distal small bowel. Does Pentasa sachets works for Crohn’s when small bowel is involved? There are contradictory statements by doctors; some say it the slow release Pentasa works and some says it is not effective. Please clarify.
A: This is a good question. Medications like Pentasa generally are not effective for Crohn’s disease regardless of its location. The release mechanism of drugs like Pentasa seems to make little difference in its effectiveness.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I was recently diagnosed with Crohn’s Disease. My symptoms right now are severe stomach pain several times a week. My GI first prescribed budesonide but the side effects were bad so he has mentioned Remicade/Humira as another option. He is hesitating and wants to redo pill cam study before starting. Will the disease always at some point get worse if I am not on any medication?
A: Thanks for your question. Generally, the chances of your disease worsening are based on the severity of your disease at diagnosis. The severity of your disease is based on your clinical symptoms, labs, imaging, and the endoscopic evaluation. For instance, if you had mild Crohn’s disease at diagnosis, the risk of the disease progressing is lower than if you had moderate or severe Crohn’s disease at diagnosis. Your GI can help determine where you fall in the mild, moderate, and severe range. It is very reasonable to reevaluate your disease as your new GI has suggested prior to starting medications like infliximab/adalimumab (aka Remicade/Humira).
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2019
Q: I am 24 years old. I was diagnosed with crohns when I was 23. I’ve been on remicade, after my 5th infusion I had blood test done and it came back with my liver having high enzymes level. I was wondering if it’s the remicade? I hope not since I feel great being on it. I just don’t know what could cause it.
A: Remicade can cause increase in liver enzymes. However, they can also be increased from other causes: inflammation, drinking the night before the blood test was taken, other medications. If you really like how you feel on Remicade I would: a) repeat the liver enzymes b) check the Remicade level. If the liver enzymes are back to normal, which is often the case, I would proceed as prior with the infusions. If they are still elevated, the Remicade level and antibody level are helpful here, as well as maybe an ultrasound of the liver and a check for viral hepatitis. In brief, I would do more testing before giving up on a drug you feel well on.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I was diagnosed with Ulcerative Colitis in April of 2018 and have been blessed to not really experience any flare ups. However, recently I have been experiencing some itching in the rectum area and was wondering what that could be caused from. It tends to occur in the mornings after having breakfast. I have tried eating different things for breakfast to see if anything changes but it seems to be the same. I was eating some cereal with grains and nuts and tried doing just eggs and bread.
A: Is there a fullness when you wipe? If yes, it might be hemorrhoids. Or, do you do something that might irritate hemorrhoids every morning, like sit on the toilet a long time playing on your phone? You can also see if it gets better with Preparation H. If it does not, you might need to speak to your GI about more testing such as fecal calprotectin or a sigmoidoscopy, though typically UC recurrence is blood and pain, not itching.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I was very recently diagnosed with Ulcerative Colitis. After my colonoscopy, my Dr removed some samples to do a biopsy, to test for Crohn’s as well. Is it possible to have both Ulcerative Colitis & Crohn’s?
A: No, you can either have ulcerative colitis or Crohn’s. Rarely, you can have something called IBD-U meaning IBD-undifferentiated, where we’re not sure in which category you fit yet. What your doctor meant was that he/she took small bowel biopsies during the colonoscopy and if these are positive for inflammation then it’s Crohn’s. If they are negative it’s MORE LIKELY ulcerative colitis but we can’t be fully sure. The two diseases are hard to tell apart, though as a rule of thumb you CANNOT have ulcerative colitis outside the colon.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I'm a 61-year-old woman, diagnosed with UC 30 years ago. I've been on azathioprine for about 15 years and have been relatively symptom free, though colonoscopies still show evidence of active disease. I have had few flares, and they subside quickly with a week or so of cortisone enemas. Recently I had a sinus infection that failed to clear after two rounds of antibiotics, and I'm now on a third, which gave me wicked diarrhea and triggered a flare. Should I worry about being on aza?
A: Yes, you should worry. I would worry about a) the long-term exposure to AZA and the associated lymphoma risk b) the long-term history of incompletely treated ulcerative colitis and the associated colon cancer risk and c) the possibility that this “wicked diarrhea” is either a flare of Clostridium difficile (C diff) infection.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have had UC for 10 years now, very mild. Went to my endocrinologists appt recently for my 6-month checkup and my liver enzymes are high. Could my Delzicol contribute to this? I have no other symptoms what so ever.
A: Abnormal liver enzymes rarely are “felt” in any way by the patient. That being said, mesalamines can very rarely (3.2 cases/1 million prescriptions, according to an NIH websity named livertox.org) cause liver abnormalities. Why are you seeing an endocrinologist? It’s more likely that either the endocrine condition you have (i.e diabetes) or the treatment for it (i.e hyperlipidemia, statin medications) has caused these liver enzymes.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: When taking 9 mg a day of Budesonide ER for 8 weeks. Do you need to taper off them the same way you would taper off prednisone and if so, how?
A: I taper my patients to 6mg/d for 1-2 weeks then 3 mg/d for 1-2 weeks, then off. I think it can be done even faster and even stopped completely, esp if there was no response in the first place. We taper prednisone because of concern for adrenal insufficiency but that is unlikely with budesonide.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: After 50 years of medically managed Crohns, I had surgery in September for a 10" resection, followed by leakage at the repair and two infection abscesses requiring drains. After 5 weeks in the hospital, I am now 10 weeks out from surgery and recovering VERY slowly. I have little appetite and am losing weight daily, with very low energy and fatigue. I need to know if this is "normal" recovery for a 78-year-old, formerly very active in good health or could it be another problem?
A: I think we should investigate a bit. The persistent weight loss is not typical and I would get a CT to make sure the abscesses are fully gone and maybe even scope you (provided the surgical site is accessible with a scope) to make sure the Crohn’s isn’t recurring instead.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have been diagnosed with Lymphocytic colitis. I was taking Budesonide but was taken off when diagnosed with breast cancer. I have been given apriso and Questran instead, but I read that one of the side effects was diarrhea. What are other treatment options?
A: I am not sure why you couldn’t stay on budesonide with breast cancer. That being said, Apriso and Questran typically treat diarrhea, don’t cause it. It’s true that mesalamines, which Apriso belongs to, can cause diarrhea in a minority of patients, but generally most patients improve on it. You can also try Imodium.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
December 2018
Q: How common is pyoderma gangrenosum in a patient diagnosed with Crohn’s disease? Does lesion ever completely heal with topical medication?
A: Pyoderma gangrenosum is one of the skin manifestations that can be seen in up to 5% of patients with Crohn’s disease. The other main skin manifestation that can be seen is erythema nodosum, painful reddish nodules on the lower legs without actual ulceration or skin breakage. Antibiotics, injections of medications into the ulcers, and topical ointments all may be used as treatments and have good response. Some medications used to treat the underlying Crohn’s can help with the pyoderma.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Multiple Sclerosis (M.S). 15 years ago. I just spent 4 days in the hospital and diagnosed with UC on top of the M.S. Are the two disease related in any way?
A: Crohn’s and ulcerative colitis are considered “immune-mediated.” The same is true with M.S. With that, there is a medication that is approved for treating moderate to severe Crohn’s disease and M.S., which is natalizumab (Tysabri). This is not approved for ulcerative colitis, although it’s sister drug, vedolizumab (Entyvio) is approved for both Crohn’s and ulcerative colitis.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was recently diagnosed with a mild case of ulcerative proctitis and am having trouble finding any information about this condition. I'm frequently redirected to ulcerative colitis (which my GI has specifically said I do not have). Are the conditions different? Can you recommend any materials I can use to educate myself on my condition?
A: Ulcerative colitis comes in different forms. About 30% of patients will present with inflammation extending beyond the rectum. Some patients have ulcerative colitis of just the rectum, or last 10cm of the colon. This “proctitis” is a part of ulcerative colitis and is treated similarly like the rest of ulcerative colitis. Some patients with just proctitis can stay in remission with topical agents like mesalamine suppositories (Canasa), but others need systemic therapies with mesalamine oral products or even biologic therapy.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Crohn's and Prostate Cancer within a month of each other. My Crohn's has been in "flare up" status for well over a year. My GI doesn't want to treat Crohn's until my prostate cancer has been treated because he feels that the biologics/immunosuppressants would make the cancer grow faster. However, my oncologists have indicated that they treat both conditions with Humira. Any evidence to support either opinion?
A: Although we would not use a medication like Humira to treat any form of cancer, we know that this class of medication can increase risk of specific types of cancers. The main types are melanoma and lymphoma. Humira and similar medications have not been associated with solid tumor risk like prostate, breast, and lung cancer. It should be safe to consider continuing Humira in this situation to keep the Crohn’s in remission. Another option would be to try a more specific medication like vedolizumab (Entyvio).
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Crohn's (terminal ileitis) in 1990. I have done relatively well after adjusting diet - mostly vegetarian. Meds are Pentasa (1500 mg daily) in recent years with the prednisone at times of flareup (obstruction) ~4 times annually. Recent colonoscopy showed stricture at the ileocecal valve. My (new) Gastro specialist has recommended surgery to remove the problem section of the ileum. Is this a common procedure - what is the typical recovery times and likely meds afterward?
A: Surgery is sometimes needed in the management of Crohn’s complications, including strictures. If the stricture looks more like scar tissue (fibrostenotic) from colonoscopy and MR or CT imaging, then surgical resection is reasonable. If the stricture is short (less than 3cm) then consider balloon dilation with an experienced gastroenterologist during colonoscopy.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I am 73 years old. I was diagnosed with Crohn's in 1998 and the doctor first put me on Pentasa, which works great, in fact, it put me in remission for years. However, about a year ago, the bleeding started again and so the doctor put me on Humira, which works at first but came back, then prednisone, came back, back on Humira, came back. Now the doctor wants to put me on Entyvio. I am very scared as the side effects is too much for me to bear. What are the risk of this medication?
A: All medications used to treat Crohn’s have potential side effects. We have to measure these side effects and compare them with the risk of untreated or undertreated Crohn’s. Potential complications from Crohn’s include stricture formation, fistulas (abnormal connections from the bowel to bowel , skin or other organs) and abscess formation. The risks of Entyvio are actually potentially slightly lower than Humira, given its more gut-specific mechanism.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
November 2018
Q: I have been in a flare for the last 8 months in which I have basically experienced nothing but diarrhea every single day. Recently, I have experienced more instances of formed stools. I feel that my rectum is “out of shape” and lacks the strength to pass some of these more formed stools. I fear this could lead to constipation. Is there anything that I can do to aide in the passing of these more formed stools?
A: Even without IBD, people can suffer with poorly formed BMs, which usually has nothing to do with the shape of your colon or the strength of the colon wall. We often try fiber supplements for this. However, if you have Crohn’s or ulcerative colitis, this is a disease that can affect the rectum. Inflammation in the rectum is the most important thing to ensure that you have more formed stools. So, the answer to your question is likely that you need to work with your doctors to best control your IBD inflammation.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: I have had Crohn's since 2003 and over the past several years I have had periods of random swelling on my feet and hands not the whole foot or hand. The size is anywhere from a marble size to golf ball size. Can this swelling be associated with Crohn’s.
A: There are extraintestinal manifestations in the skin (as well as the joints and eyes) which are related to Crohn’s disease but separate from the bowels. However, I am not sure about the random episodes of varying sizes. Nothing specific to IBD or your IBD meds comes to mind, so I recommend you follow up with your gastroenterologist.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: After 20 years with UC, I had a total colectomy 5 years ago. I was recently diagnosed with Episcleritis. Is it common for autoimmune symptoms to occur in other organs, even after a colectomy?
A: Yes, you are at risk for other autoiummune disease in association with IBD, even if you don’t suffer from IBD any more. This is essentially what a rheumatologist does. The good news is hopefully episcleritis is easier to treat than UC and hopefully a rare occurrence for you.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: My daughter has had Crohns disease for almost 20 years. She has been having extreme bloating after meals no matter what she eats. She can look almost 7-8 month pregnant. What can we do?
A: Bloating can be a common symptom and it can happen for various reasons. We most commonly see bloating in patients with irritable bowel syndrome (IBS). The website can help you learn more about IBS, as we see IBS in a lot of our Crohn’s and colitis symptoms. These are essentially symptoms that may occur in the absence of actual Crohn’s inflammation. However, If she has a stricture (or narrowing) from having Crohn’s disease, sometimes certain foods, such as fibrous foods/roughage can cause bloating. With strictures—sometimes treatments are possible without the need for surgery. I would recommend follow up with your GI doctor to see if any further testing or treatments are needed.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: I have been taking Humira for 7 years with great response and no side effects. Recently I have had episodes of extreme fatigue with weak feeling and a shaky feeling the day after injection. My doctor ran a series of blood work which indicate a possible drug induced lupus. I have absolutely no other symptoms such as joint pain and such. I also take Synthroid 25 mcg and have for years. This level is checked every 6 months. Would switching to another medication end the lupus side effects?
A: It’s hard to know what you exactly had. Sometimes, people can have injection site reactions (the newer humira pens may be better for you), while others can be due to antibodies to humira (which you then need to switch off humira). It depends on what tests your doctors have checked, but if this has been deemed a lupus-like reaction to Humira, then you may have switch to a different therapy. The good news, however, is that you responded well to humira, then we now have lot of choices for you that you will likely also respond well.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: Does Stelara have less cancer potential than other biological as a treatment for Crohns?
A: Keep in mind that people with IBD are at increased risk for cancers, esp if their disease is not under control, so it’s often difficult to know based on the clinical trials whether a person got cancer because they were at higher risk for getting cancer vs whether the actual drug caused cancer. As a whole, we have data on all of the biologics, and none of them have been associated with increased cancers. This includes stelara, where we have not seen any increased risks of cancer.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: I was diagnosed 6 yrs ago with UC. It was a mild case. I took Lialda/Mesalamine, and it did the trick. I stopped taking it 6 months ago. A month ago, I had a mild flare up. My doctor wants to put me on Prednisone to bring down inflammation. I do not think my symptoms are bad enough for a steroid. If I take nothing, will the inflammation go down on its own? Is there a natural way to bring down the inflammation? Ginseng or Tumeric perhaps?
A: You probably don’t need prednisone if the flare is mild. We usually give people prednisone to make them feel better and to shorten time of suffering. Similarly, I think that mesalamine is a very good drug for mild disease. Tumeric has been studied as well, but I think that mesalamine is more effective. You can also probably tough this out, but you run the risk of it getting worse. Plus, you are almost guaranteed to extend your period of suffering. Don’t suffer. Take the mesalamine.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
October 2018
Q: My daughter was diagnosed with UC in December 2017. She is currently taking Apriso and ProctoFoam. Her symptoms have decreased at times, but not always and she is currently experiencing diarrhea, abdominal pain, and fatigue. I have heard from some people mention Tumeric for fighting inflammation throughout the body. What are your thoughts on Turmeric for UC patients?
A: Anytime a patient is interested in adding an herbal supplement or botanical, discuss with your medical team. Tumeric is derived from the rhizome of a plant from the ginger family. It has been used in Asia to season food. It has a bright yellow color. Curcumin is a compound found in turmeric and it has been touted for its anti-inflammatory effects. There are some studies that indicate mucosal healing with the addition of turmeric/curcumin to medications. Turmeric in amounts that have been tested are generally safe when taken orally. High doses may cause GI symptoms. Check the commercial products for any additional ingredients.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I have Crohn's disease and have read about the benefits of drinking celery juice first thing in the morning on an empty stomach. Do you recommend trying it? Also can juicing fruits and veggies (as opposed to eating them) be a good way to get the nutrients they provide?
A: I have not read any evidence-based journal articles about celery juice. I cannot recommend celery juice. Juicing fruits and vegetables is popular. Juicing is not any healthier than eating whole fruits and vegetables. If you prefer to juice, consider making smoothies by adding yogurt to the homemade juice.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I’m trying to learn more out about diet for my Crohn’s Disease. I know it says to stay away from sugars but are there any sugars allowed? Like regular sugar just not processed?
A: No one diet has been scientifically proven to manage Crohn’s disease. Some patients are interested in carbohydrate restriction like the specific carbohydrate diet, gluten-free diet, and FOD Map diet. Some patients have seen reduction in GI symptoms when they modify their diets. Always discuss with your medical team.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
September 2018
Q: My daughter was diagnosed with UC 20 years ago. After trying many meds she finally was able to get into remission using Remicade every 2 months. She has been doing these infusions for 10 years with no flares. She is now considering getting pregnant. Can she continue to use Remicade during pregnancy? Can she also breastfeeding?
A: Great question – absolutely, we recommend continuing with the infusions throughout all three trimesters of pregnancy as the priority is to keep your daughter (the mother) in the best health possible to insure a safe and health pregnancy. Infliximab, and all the anti-TNFs, are safe to continue throughout pregnancy and safe to use during breastfeed as very little is passed into the breastmilk. Because these agents are proteins, any tiny amount ingested by the baby will likely be degraded by digestive enzymes. While most of the agents cross the placenta and can be present in the baby’s bloodstream at birth, there have so far been no increased safety signals in terms of infections, developmental delays, or growth retardation. We know this thanks to the PIANO registry, a multicenter prospective pregnancy outcomes registry run by Dr. Uma Mahadevan of UCSF and funded through the Crohn’s and Colitis Foundation. It’s important to discuss family planning with your provider and a high-risk obstetrician familiar with IBD. Moderated Note Added: To learn more about the PIANO Registry email info@crohnscolitisfoundation.org or view program transcript at: http://www.slideshare.net/CrohnsColitis/facebook-chat-120-pregnancy-in-ibd-and-neonatal-outcomes
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: My friend's son is 14 yrs old and was recently diagnosed with Crohn's disease. He is constipated. What type of diet would best suit him?
A: Because it is a recent diagnosis, there is likely inflammation in the intestine, rather than remission. The amount of inflammation in the intestine can be determined by medical tests (labs, endoscopy, etc.) and will help us decide what diet is recommended for him. A diet that is lower in fiber including refined grains, cooked vegetables and soft fruits without seeds and skins is recommended when there is inflammation, because fiber is irritating. The doctor can recommend a (non-fiber containing) medication to help with the constipation until the inflammation is improved. Once a patient is in remission, we encourage a gradual increase in fiber to a Moderate Fiber diet which would include whole grains and more variety of fruits and vegetables.
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Pamela A. Duncan, MS, RD, LDN
Dietitian III, IBD Clinic, Vanderbilt University Medical Center
September 2018
Q: I am 20 and was diagnosed with mild Crohn’s this summer. I am on Mesalamine (highest dose) and also currently on Budesonide for 8 wks. to get over my flare. I’ve been researching diets and lifestyle changes so that I can try to feel my best. I started trying to go completely gluten free, but is that even necessary? I have read so many different opinions on diets etc. I have been buying organic and cleaner foods but not sure what to do!
A: The overall goal with IBD is to move to remission. This does best with a combination of medication and diet, but diet does not alone enable remission. There is no research with Crohn's & Colitis patients supporting the need to avoid gluten or dairy in the diet, but many feel better with lactose free dairy products or lactose free plant milks. There are many refined grains that can be helpful to improve symptoms and some contain gluten i.e. white toast and white pasta and some do not i.e. white rice and white potatoes, so I agree that going gluten free is not necessary. Budesonide is a medication prescribed to reduce inflammation and fiber is irritating to the intestine, so a diet lower in fiber including refined grains, cooked vegetables and soft fruits without seeds and skins is recommended until weaned off budesonide. Within a lower fiber diet, choose less high fat or spicy foods, and limit or avoid drinks with caffeine, sugars or sugar free additives. Cooking at home rather than eating meals out enables you to know what was added to the food and is a better choice most often. When tests have confirmed remission, then gradually increasing fiber in the diet with whole grains, and more variety of fruit and vegetables is recommended.
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Pamela A. Duncan, MS, RD, LDN
Dietitian III, IBD Clinic, Vanderbilt University Medical Center
September 2018
Q: I was diagnosed with ulcerative colitis in 1984 when I was 14 and in 2004 had a total colectomy. My small intestine was reattached and I now have a J pouch. Since 2007 I am constantly battling intestinal blockages and dehydration. What are some things I can try with my diet to keep this from occurring so often? Is there a specific diet plan I should be following or things I should be eating that I am not currently taking? What is a good diet plan for dealing with this issue?
A: A J pouch often can result in increased trips to the rest room which can result in dehydration. Consuming adequate fluids daily which are not high in sugar are beneficial. Oral rehydration solution contains added salt and may be helpful for maintaining hydration. It can be purchased ready-to-use and there are many recipes available on the internet listed with the Ostomy Association. Secondly, intestinal blockages require a diet very low in fiber which includes foods that are very easy to digest from all food groups: protein, refined grains, soft fruits and vegetables without skins or seeds and foods with Calcium. Once you are staying well-hydrated, you may be able to increase fiber, but I would check with your doctor first and then seek care from a Registered Dietitian to help you put this into practice.
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Pamela A. Duncan, MS, RD, LDN
Dietitian III, IBD Clinic, Vanderbilt University Medical Center
September 2018
Q: I was diagnosed with granulomatous colitis (Crohn's Disease) in September of 2016. I’m 19 years old and on Humira and Lialda and in remission for about 11 months. I wanted to ask about what life expectancy I can expect with my type of Crohn's disease? Additionally, how can I do my best to prevent and mitigate the risk of getting GI related or skin cancer as well as complications such as strictures, abscesses, blockages, scarring, fistulas, etc.?
A: Thanks for the question, first, wonderful news that you are in remission! The key, though, is to find out what type of remission you are in as our goal is for your Crohn’s disease to be in “deep remission” which means that your repeat colonoscopy shows complete healing with no active inflammation on biopsies. It’s important to have that relook to make sure your colon has healed as ongoing inflammation, even at the tissue level, can be associated with an increased risk of colon cancer. In terms of life expectancy, your Crohn’s disease diagnosis – especially if well controlled, should NOT impact your overall life expectancy. We do recommend that you maintain a healthy diet, follow preventative care recommendations, and see your primary care provider, gynecologist, and gastroenterologist routinely for scheduled visits, wear sunblock, get your skin exams for skin cancers, and stay on top of your vaccinations – flu, pneumonia, and HPV are the ones we would recommend for you. The most important preventative measure you can take is to keep your Crohn’s disease well controlled – the medications that got you into remission are the one you should likely stay on. Mesalamine (such as Lialda) is controversial for Crohn’s disease – you may or may not need to stay on that in the future, but I would recommend you discuss with your provider.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: Are there any medical risk or downside of doing an endoscopy and colonoscopy at the same time?
A: There is no such thing as a “risk-free” procedure, however, routine diagnostic endoscopy and colonoscopy are relatively low risk in the scope (pun intended ) of procedures gastroenterologists perform. If your provider recommends getting both procedures for a clinically appropriate indication, then getting both at the same time avoids another round of sedation in the future. An upper endoscopy does not require any bowel prep and typically only adds 10-15 minutes more of procedure time. We routinely perform both procedures together if warranted. Moderator Note added: To learn more about diagnostic test download the brochure Diagnosing and Monitoring IBD http://www.crohnscolitisfoundation.org/assets/pdfs/diagnosing-monitoring-ibd-brochure-final-rev062518.pdf
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I have CD for 15 yrs. and have had 4 resections. I have a protrusion that sticks out in my stomach area. My doctor says it is not a hernia. What tests are needed to find out what is going on? Is a protrusion in the stomach area a common experience with CD?
A: The most common cause would be a hernia from a prior incision site, but that’s usually evident on physical exam particularly if it bulges out as you move from laying down on your back to sitting, for example. Most hernias don’t require intervention, they also may or may not be seen on imaging studies depending on size and location. If it’s not a hernia, then I would ask your provider about other possibilities. Concerning features would be increasing size, pain, warmth to touch, redness, fixed position – not mobile.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I was diagnosed with UC in 2001 and started on Remicade. I am currently on Entyvio. Two years ago I had a routine colonoscopy and biopsies that showed low grade dysplasia. The dr. was able to successfully remove the dysplasia during another colonoscopy under anesthesia. I had another colonoscopy and I can say that I am in remission. No signs of any UC inflammation. However, biopsies again showed signs of low grade dysplasia. What other treatment alternatives are available?
A: There is no “treatment” for dysplasia, per se. The goal is to try to remove the dysplasia if identified. Risk factors for dysplasia are extent of UC (does it involve more than just the rectum), duration of UC diagnosis (we often recommend surveillance colonoscopies to try to detect dysplasia after 8+ years of diagnosis or sooner if there are higher risk factors such as family history or a liver condition such as primary sclerosing cholangitis or personal history of dysplasia), ongoing inflammation and increasing age. The good news is that your UC is well-controlled. However, you have scopes that show dysplasia – the priority is to try to insure we see and remove the dysplasia as best as possible. I would discuss with your provider using an enhanced imaging technique such as chromoendoscopy to try to identify areas of dysplasia and fully remove them if possible. Sometimes, interventional endoscopists are needed to help with these procedures.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2018
Q: I was diagnosed with UC about a year ago after suffering from constant diarrhea, nighttime urgency, and abdominal pain for the year prior. Since my diagnosis I have been consistently taking Mesalamine and 6-MP, and my symptoms have mostly subsided, but I still have not had any signs of solid stools. Is this all I can hope for in remission, or should I consider changing medications?
A: I am happy to hear that you are clinically feeling better. The real question is if you have achieved objective remission. To assess this we use blood levels for inflammation (CRP), stool studies (fecal calprotectin) and/or repeat colonoscopy. If you have signs of objective remission or mucosal healing and still have ongoing loose stools, your provider can address other causes for diarrhea. If you have objective evidence of ongoing disease activity then this might be the cause of your loose stools, they would want to consider why you have not had a complete response to therapy (mesalamine and 6MP). There are 2 likely explanations: you are on suboptimal dosing (you need more drug) or your disease is not going to response to these types of therapy and achieve complete remission. Next steps: find out if you have ongoing disease activity and work with your provider if you do to determine why. We can often check levels of 6-MP and find out if you are on enough therapy.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: I have Crohn's Disease of the large intestines without complications. My question is my G.I. doctor wants me to have a colonoscopy every year. Is this necessary to do annually?
A: The guidelines recommend that patients that have at least 1/3 of their colon involved with disease (in your case Crohn’s colitis) should undergo surveillance colonoscopy every 1-3 years starting 8 years after disease. We base the frequency of surveillance on several factors, if your disease has been well controlled and you have histologic healing (biopsies without disease activity), no family history or personal history of precancerous changes (dysplasia) and no other risk factors for dysplasia, we might consider spacing out your interval. You can read about the recommendations in the SCENIC consensus statement or the ASGE guidelines for colon cancer surveillance in IBD patients.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: I am having a period about every 2 weeks since being diagnosed in May. I just finished a two month treatment of budesonide (steroid). Is this typical or should I consult with my OB/GYN? I am 48 so I often get a response that I am perimenopausal.
A: Patients with active Crohn’s disease or ulcerative colitis can have variations in their menstrual patterns. So it is not uncommon to see irregular menses or absence of menses until the body is healing (improved inflammation). However whenever there is a change in vaginal bleeding, I would recommend that you consult with your gynecologist to ensure that no further work-up is needed at this time.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: Can Crohn's disease effect my teeth?
A: The easy answer is yes, without knowing what effects you might be having. Crohn’s disease can lead to malabsorption of important vitamins and minerals that can be important for overall health and can impact your teeth as well.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: What happens if you have a positive TB blood test during treatment with a biologic?
A: Current recommendations would be to have close follow-up evaluation including chest imaging and referral to see infectious disease specialist. Your provider will likely notify you to hold your biologic therapy until confirmation testing is completed.
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Jami Kinnucan, MD
Assistant Professor
June 2018
Q: I was diagnosed with Crohn's over a month ago and have drastically adjusted my diet along with the medication. My biggest heartbreak is coffee. Do people find it problematic to drink it (only one cup a day) while in remission without it contributing to a new flare up or is it best to be remove it from my diet forever?
A: There is no clear research on coffee/caffeine and IBD. I am usually okay with most of my patients having a cup of coffee (or two) a day. That said, there are usually a few things that I clarify about coffee/caffeine beforehand: 1) Caffeine stimulates the bowels, so if you have urgency and/or diarrhea, which usually accompany a flare, I would avoid. It’s just basically fueling the fire and not helping the symptoms. 2) Coffee is not all created equal. A lot of the negative health associations with coffee are more related to what you put into the coffee – sugars, artificial sweeteners, fat, etc. So, a little bit of milk, lactose free milk, or milk alternative is the better choice. And remember, 1 cup equals 8 ounces (portion control). 3) Coffee/caffeine can exacerbate stress, anxiety, and alter sleep. So, if you are experiencing any of these issues, I would decrease or avoid.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
June 2018
Q: I’m wondering what oils my daughter can have. She has been diagnosed with ulcerative colitis. I know olive oil is good but vegetable oil is not. What about cotton seed oil, soy bean oil? Palm oil, sunflower oil and hydrogenated vegetable oil? Any help would be greatly appreciated.
A: • Flaxseed oil is a great option for drizzling and salads. It’s high in plant-based omega-3 fatty acids, but you can’t cook with it, because it oxidizes quickly. • Extra virgin olive oil is my favorite and a great choice for low-smoking points, so usually okay for drizzling, salads, and light sautéing. It has high amounts of anti-inflammatory monounsaturated fats that are also easier to digest/break down. • Avocado oil is packed in heart-healthy monounsaturated fats, but unlike olive oil can be used at a higher smoking point (about 375 to 400F). It has a neutral flavor, and has been less chemically processed than canola or other vegetable oils. • Cold-pressed safflower or sunflower oil is low in saturated fats and high in omega-9 fatty acids. They both have higher smoking points (about 475 to 510F), so can be used frying (in moderation) and sautéing. • As far as soy bean oil, it’s a great source of polyunsaturated fatty acids as well as vitamin E, but much like other vegetable-based oils, I would choose cold-pressed or expeller-pressed oil. Ideally choosing organic and/or non-GMO varieties and always avoid the words hydrogenated or partially hydrogenated, which usually imply presence of trans fats, which we want to avoid. It also has a higher smoking point at 450F.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
June 2018
Q: I was recently diagnosed with a mild case of Crohn's ileitis. I was wondering what diet and lifestyle changes I should make to accommodate to my disease?
A: 1) Eat a cleaner diet. Try to choose whole foods and whole ingredients. Reduce/avoid processed, packaged, artificial, dyed, and fast food. This naturally forces you to cook a little more and have a better general awareness of food. I usually do suggest to try and choose local/organic options, especially when it comes to animal products and use the Dirty Dozen/ Clean 15 for all produce, which will help reduce pesticide exposure. 2) Avoid foods that exacerbate symptoms. It can help to keep a food/symptom diary. Some common triggers are: a. Alcohol and/ or caffeine (stimulants) b. Dairy products, usually high in lactose such as milk, ice-cream, creamy sauces c. Fried or high-fat foods, such as fried foods, red meats, processed meats, pastries d. Large quantities of roughage, such as salads, beans, whole nuts/seeds. Too much fiber, especially during a flare, usually exacerbates symptoms. e. Refined sugars and flours. Some patients are sensitive to high amounts of gluten, such as bagels, pastas, cookies, etc f. Additives and preservatives such as MSG, antibiotics, emulsifiers, artificial sweeteners, and coloring agents 3) Instead of altogether avoiding foods, try to change the quality and/or texture of the food. For instance, patients during a flare may not be able to have a salad, but you may be able to include a little spinach in a smoothie, add yam and squash to a chicken soup, or have soft/skinless fruit such as bananas, cantaloupe, or papaya as a snack. Cooked, blended, stewed, ground, and pureed food are can be easier to digest. 4) Focus on how you eat as much as what you eat. Chewing your food, slowing down, eating mindfully, and avoiding overeating are as important. This aids the digestive process and essentially creates a better relationship with food. 5) Find something that helps you relax and find your happy place, it can be meeting with a friend, finding a support group, meditation or Yoga. Stress mgt is a key part of your overall healing.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
May 2018
Q: I am 68 years old and have UC. I was switched 4 weeks ago from Remicade (16 months) to Humira. Suddenly I have severe joint arthritis in my left hip that is making it very difficult to work. My GI says the Humira has nothing to do with the arthritis. The timing is too coincidental. Is there a correlation between the new medication and the development of weakness and joint pain arthritis?
A: [It is difficult to answer personal health questions as there can be nuanced causes of arthritis or it may be related to other co-morbidities.] While uncommon, joint pain affecting only one hip can be related to either IBD or its treatments, includes other medications such as prednisone. It would be appropriate for you to also be evaluated by your primary care physician and/or a joint specialist (i.e. rheumatologist) to further determine the cause and treatment of your new hip pain, especially given the severity of your discomfort.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I had my second dose of Remicade today and I am also on 40mgs of prednisone. Since my first dose of Remicade, I had a small breakout on my face, neck, chest and upper back. However, it's gotten worse. My face is terrible looking. I have never had my face breakout like this along with my neck and chest. Could this be from the Remicade or from prednisone?
A: [It is difficult to answer personal health questions, particularly those about rash, without seeing it.] Yes, treatment with Remicade and prednisone can both cause different types of rashes and skin conditions. For example, steroid medications like prednisone can cause acne, though this will improve as you come off the medication. A dermatology exam may be able to clarify what specific type of skin condition you have, what it may be attributed to, and how to treat it.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: Over the past 17 years I have had Crohn's and developed clubbing of my fingers. I am being treated with Humira and have no symptoms related to the IBD. Is there anything I can do to make my fingers go back to normal?
A: Clubbing is not a very well-studied entity, though some disease or medication-related clubbing has been reported to be reversible by treating the underlying cause. Presumably your clubbing is due to your Crohn’s disease. If so, beyond continued treatment of your Crohn’s, I unfortunately do not know of any other suggestions for reversing the clubbing.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I have had UC for 9 years and have been on Humira for the last 1 1/2. I have flared up recently and my doctor wants me to change to either Remicade or Entyvio. I developed antibodies to Humira. Can I also develop antibodies with the other medications? How do I choose between the two?
A: It is possible to develop antibodies to any biologic medication (such as Humira, Remicade, or Entyvio), though early studies suggest that antibody development is less common with Entyvio. Other things to consider when deciding between the two treatments is that they have different mechanisms of action. Remicade is a TNF inhibitor, very similar to Humira. Therefore, if you responded well to the Humira before you developed antibodies, you may respond well to Remicade too. Because Entyvio works through a different mechanism, it is less clear how your disease may respond. Finally, Entyvio’s actions are essentially targeted to the intestinal tract, whereas Remicade functions throughout the body. This difference has implications on the safety profiles of these drugs and may also be important if you have any disease manifestations outside of your GI tract. Your IBD physician can help you decide which medication may be best based on your specific medical history and concerns.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I was diagnosed with ulcerative colitis 6 years ago and was prescribed mesalamine. Six months ago my new specialist determined that I never had the disease. A year after starting mesalamine I developed debilitating exhaustion, and weakness and extreme pain in my legs which no physician has been able to explain. I have seen no improvement in these symptoms since stopping the medication. I am concerned that the medication, taken for no reason, may have caused my symptoms. Is it possible?
A: Mesalamine is typically well tolerated and I do not know of any causes of your symptoms related to mesalamine. Of note, there are other diseases similar to IBD or related to IBD that can also lead to fatigue and body or joint pains. You may want to be evaluated for other diagnoses by a specialist, such as a rheumatologist.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: Are there any clinical trials being done anywhere in the world on reversing scar tissue, particularly in the intestine? If not in the intestine, then are there any studies on reversing scar tissue in the body? Does anybody know of any possible way to reverse scar tissue? How long until this is possible?
A: All clinical trials in the United States should be registered on www.clinicaltrials.gov, and some studies conducted outside of the US are listed on the site as well. There are currently a couple of ongoing trials in Spain specifically studying the treatment of strictures (i.e. scars) in Crohn’s disease.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I am on Remicade and over 55. I am wondering if you have any opinion on getting the new Shingrix vaccine for prevention of shingles. It is a non-live vaccine. My gastro doctor wasn’t familiar enough with it yet to recommend it or not.
A: Vaccination against shingles is typically recommended in all individuals age 50 years and older. However, the previous shingles vaccine contained live virus and therefore was not appropriate for those taking immune suppressive medications, such as Remicade. Shingrix is a new vaccine that does not contain live virus, and is therefore a new option for you to safely receive a shingles vaccine. In fact, the Center for Disease Control’s Advisory Committee on Immunization Practices recently recommended the use of Shingrix over the previous live vaccine for all adults (even those not on immunosuppressive medications), though the vote on this preference passed on very narrow margins (8 favored, 7 opposed). Therefore, it would be reasonable for you to get the Shingrix vaccine both because of your age and because of your treatment with Remicade.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I am 44 years old, recently diagnosed with Crohn's disease, with initial symptoms having started just 2 years ago. How common is fatigue, even when GI symptoms are mild and not currently anemic. I’m on mesalamine, iron and turmeric? Can this mean the disease may not be fully controlled and/or different treatment warranted?
A: Fatigue is commonly associated with Crohn’s, but specific treatment for fatigue is not well studied. You are right to make sure that you are not anemic and to ensure that your disease is fully controlled. Your physician can help order laboratory tests, imaging studies, and/or scoping procedures to confirm that your disease is in remission. Of course, it is also important to make sure you are getting enough sleep. Another condition that is both commonly associated IBD and with fatigue is depression, though unfortunately it often goes unassessed. If your fatigue persists, please bring it up with your GI and primary care physicians so that medical conditions associated with fatigue can be assessed.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: My 17 year old son was diagnosed 6 month ago with UC. He started Humira injections 3 weeks ago and we’ve seen no improvement. When should we begin to see results? Additionally, his body temperature has recently (& occasionally) dropped to 96.2. Is this a common side-effect of Humira?
A: Most individuals who are going to respond to the medication will feel some improvement within the first four weeks of treatment. Reasons for lack of response include antibody development against the medication or “primary non-response” to therapy (i.e. the drug mechanism is not working for the disease). If there is no resolution of symptoms after 8 weeks of treatment, then typically a new medication should be tried. As for the low body temperature, the most common cause is an inaccurate reading. However, if the temperature is taken orally and was not taken soon after a cold beverage, another consideration is that he may have an infection. Presumably, you are checking the temperature for a reason (i.e. him feeling unwell) and humira (as well as some other IBD medications) suppress the immune system and can increase the risk for infections. If this a concern, please notify your medical provider right away.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
April 2018
Q: I have had UC for 9 years and have been on Humira for the last 1 1/2. I have flared up recently and my doctor wants me to change to either Remicade or Entyvio. I developed antibodies to Humira. Can I also develop antibodies with the other medications? How do I choose between the two?
A: It is possible to develop antibodies to any biologic medication (such as Humira, Remicade, or Entyvio), though early studies suggest that antibody development is less common with Entyvio. Other things to consider when deciding between the two treatments is that they have different mechanisms of action. Remicade is a TNF inhibitor, very similar to Humira. Therefore, if you responded well to the Humira before you developed antibodies, you may respond well to Remicade too. Because Entyvio works through a different mechanism, it is less clear how your disease may respond. Finally, Entyvio’s actions are essentially targeted to the intestinal tract, whereas Remicade functions throughout the body. This difference has implications on the safety profiles of these drugs and may also be important if you have any disease manifestations outside of your GI tract. Your IBD physician can help you decide which medication may be best based on your specific medical history and concerns.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
March 2018
Q: I have Crohn’s and I am considering doing a liver cleanse. Is it safe to do so or not recommended?
A: A liver cleanse is not recommended. There is no scientific evidence to support that a liver cleanse is beneficial for Crohn’s disease.
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Tina Patnode, RDN, LD
Registered Dietitian Nutritionist
March 2018
Q: I have had Crohn's disease since 2003. All of the research I have done said to cut back on the fiber. I was just put on a high fiber diet. That has left me confused. Is fiber bad for crohn's disease?
A: There is an abundance of information online about dietary fiber’s impact on specific disease states. I understand how it can be confusing. With regard to Crohn’s disease, increasing dietary fiber may be beneficial while the disease is in remission. During a flare-up, a lower-fiber diet (10 grams per day) may help to minimize digestive symptoms such as diarrhea or loose stool. As symptoms subside, you want to gradually increase dietary fiber and drink plenty of fluids. The goal is to eat a well-balanced diet to include foods that are anti-inflammatory. This includes vegetables, fruits, fish, whole grains, legumes, nuts, seeds, herbs and spices such as turmeric, ginger, and garlic.
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Tina Patnode, RDN, LD
Registered Dietitian Nutritionist
February 2018
Q: Our 9-yr old was diagnosed with Crohn's 8 weeks ago, and is on Remicade. He is on a mostly liquid diet. Because the protein drinks are coming 3 times/day, he started fighting us and not wanting to drink them. Each and every bottle is a battle that has just worn us down emotionally. We're at our wits and creativity end trying to find ways for him to take them. We've tried Special-K chocolate, Ensure Clear, and Carnation Breakfast. This is so very, draining. Any advice is much appreciated.
A: Having a child with medical issues can create many obstacles that sometimes we just need help to navigate. Communication with your son’s gastroenterologist or pediatrician is a great place to start. Discuss your concerns, what you have tried and how this is impacting the family. They will likely be able to provide some suggestions or direct you to a specialist who can help. To address the dietary aspects, ask if there is a pediatric dietitian who specializes in IBD or feeding issues. This person may be able to create a tailored diet plan taking into consideration your child’s age, diagnosis, medication, and medical recommendations. Also, a child psychologist would be a wonderful addition to your child’s team! Perhaps there are some emotions that your son is having a difficult time processing which impacts other aspects of his life (i.e. eating). The child psychologist can aid your child in working through the various aspects of having IBD in a developmentally appropriate way. The psychologist can also work with the family to aid with implementing strategies to make things less challenging at home.
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Megan Riehl, PsyD
Assistant Professor of Medicine
February 2018
Q: I was in remission for about 8 months. Recently I had a flare and my doctor wants me to go on Imuran. I have been to the point of having a mental and nervous breakdown over this due to my fear of the cancer side effects. The 2 specialists I saw say to weigh the risks and I know the risks of the flare, however, I literally cannot function or enjoy life at the prospect of taking a medicine that could kill me. This is dramatic but I haven’t been able to cope with this and need help.
A: Taking a new medication, especially one with scary, possible side effects, can be anxiety provoking. Fears related to the unknowns and uncontrollable aspects of the medication can drive that anxiety as well. If you are feeling debilitated by the anxiety and worry over this medication, seeking the support and guidance of a psychologist can be very appropriate and helpful. Look for a mental health provider who specializes in gastrointestinal disorders, chronic health issues and/or anxiety. A provider who specializes in the use of Cognitive Behavioral Therapy (CBT), a type of therapy very commonly used in medical settings and to treat anxiety. CBT is used to address your worrisome thoughts and provide you with tools to better manage them. Mental health care when managing a chronic disease, like IBD, is often just as important as your medical care. Your therapist can aid you in developing tools to better manage stress and adaptively cope with worry and fear. When you feel better about your self-management skills, you can regain focus on the enjoyable aspects of your life.
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Megan Riehl, PsyD
Assistant Professor of Medicine
February 2018
Q: My mom thinks I am researching and educating myself on Crohn's because I want attention, wants to lay down and be a "bum" all my life and want pain meds and thinks I'm making up the pain and the whole diagnosis. Says she knows people who have it and are never in pain so I must just want a fix and thinks I'm making myself sick (throwing up and diarrhea) She's causing me more stress and depression. What can I do to inform her better or something?
A: Sometimes having IBD can feel as though you have an invisible illness. That can make it hard for family and friends to truly understand all the ways in which IBD impacts your life. There is a great deal of education that is required to successfully navigate IBD. Asking your loved one to learn with you can be a good starting place. Also, consider outside resources for support, such as friends, the IBD community, and a mental health professional. Here are a couple suggestions to aid with building a support network: • Invite your family member to an appointment with your gastroenterologist. Ask your provider to discuss the disease, impacts on the family, treatment and potential side effects of treatment. • Ask your loved one to read this document about being diagnosed and managing IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/newly-diagnosed.pdf • Invite your family member to a Crohn’s and Colitis Foundation patient education event in your area. • Join an IBD support group to talk with other people who have IBD and have had similar experiences with family and friends. • Invite your family member to sit with you and watch IBD School videos from IBD experts at the University of Michigan: http://www.med.umich.edu/ibd/school/index.html • Communicate how it makes you feel when your loved one doesn’t take your disease seriously. Let them know how they can best support you. • Consider establishing care with a mental health professional who works with people with chronic illness to learn skills to manage the many complexities of IBD.
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Megan Riehl, PsyD
Assistant Professor of Medicine
February 2018
Q: My 14 year old daughter is on 6mp and her liver enzyme level is 116. The doctor said that was high but nothing needs to be done about it. Could you shed some light on why nothing needs to be done about a high level?
A: Liver enzyme levels can be elevated for any number of reasons including: medications such as 6-MP, infection, IBD-associated liver disease and other medical conditions. A transient or mild elevation in a liver enzyme test is not typically a cause for concern, but means that the tests should be repeated to ensure that the levels have returned to normal and are not increasing. If the liver enzymes remain elevated additional blood tests and/or imaging of the liver may be warranted. It may also be useful to have the 6-MP level checked to make sure that the blood levels are in the target range.
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Stacy A. Kahn, MD
Attending Physician Boston Children's Hospital
January 2018
Q: I am switching to Humira from Remicade due to infusion reaction. What dose and timing of oral prednisone do you recommend to prevent reaction to Humira?
A: That’s an interesting question. With infliximab (Remicade), some providers use steroids (like prednisone) before the infusion with the thought that it prevents infusion reactions. For adalimumab (Humira), I have found that using allergy drugs like diphenhydramine (Benadryl) can be effective in preventing injection site reactions. I have not use steroids with adalimumab in the past to prevent injection site reactions.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I have ulcerative colitis. I have lost about 20 lbs in the last two months. Is that normal amount of weight loss?
A: I would need more information on this situation to be able to answer this question adequately.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am 22 years old and have had Crohn's and ulcerative colitis since I was 5 years old. I just got over a bad flare up and a recent scope shows inflammation is almost gone. However, I have constant pain in the right side of lower abdomen that will not go away. The pain is interfering with daily activities. I have been in and out of the hospital and seen my doctor numerous times and no one seems to figure out how to decrease this pain. Any tips of how to deal with the pain?
A: This is a common scenario and I am glad that you brought it up. We know that there is a group of patients with Crohn’s or ulcerative colitis who have ongoing pain without evidence of active intestinal inflammation. The pain can be due to multiple causes including small bowel bacterial overgrowth, musculoskeletal pain, irritable bowel syndrome, etc. It’s important to work with your gastroenterologist to determine the cause of the pain so it can be adequately managed.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I have had Crohn's for about 15 years. I recently found out about the MTHFR (C677T) mutation that sounds like it has some relation to IBD. What information can you tell me about this mutation?
A: This mutation may have some relation to the development of IBD. It may place a patient at higher risk for clotting and it is associated with other disease processes so it is not specific for IBD. There have been over 200 different gene mutations found that are associated with IBD. The reality is that most patients do not have any of these mutations because IBD involves a complex interplay between organisms in the gut, environment factors like smoking, and an overactive immune system.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: My 21-year old son is on 6mp for several years with good success. He developed hives a week ago that have not gone away. He woke up with swollen hands and feet with welts around the areas. Hives have been seen on upper arms, back, knees, and they come and go. We're seeing an allergist next week. There are warnings to seek medical professional right away if hives and rashes show. He also has a cough and sore throat. Why the warning on meds and could he be allergic to 6MP now?
A: Thanks for your question. Several medications can cause hives. However, it would be unusual that your son having being on 6-MP for several years would then go on to develop hives. It was completely appropriate to seek out a health care professional for the symptoms, but since there are multiple causes of hives besides medication, it may be best to await the work-up before attributing the symptoms to 6-MP.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I was diagnosed with CD in 2014 at age 60. I have been on Pentasa and did ok. I had a flare in mid-2017 and was changed to budesonide after colonoscopy showed moderate inflammation and small ulcers. The budesonide has not helped and now my Gastroenterologist wants to start Imuran or Remicade. I have read about both and wonder which is really better for CD. I can't find any clinical trial data/studies on Imuran in CD and am concerned about its use in CD. Which drug is the better choice?
A: This is a great question. When it’s time to advance medical therapy to medications like azathioprine (Imuran) and infliximab (Remicade), there are multiple considerations. There is data that both medications are effective in CD. The better choice is going to depend on the specific patient. Azathioprine takes 2-3 months to generally kick in and is an oral medication taken daily while infliximab can kick in after 2-4 weeks but is given as an IV in set intervals. It will be best to discuss the best choice with your gastroenterologist.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am a 20 year old male who was diagnosed with ulcerative colitis in 2014. I am taking Asacol HD (600mg) with my Azathioprine daily. The Azathioprine is working very well for me and I haven't had a flare up since I started 2 months ago. However I have been told that this drug can increase the chance of cancer. I wanted to ask what percentage of people taking this medication actually get cancer and of what age group? Should I be worried about taking this medication?
A: This is a very common question. The two most common types of cancer associated with azathioprine are: 1) nonmelanoma skin cancer, and 2) non-Hodgkin’s lymphoma. The risk of skin cancer is about twice that of those individuals with ulcerative colitis who are not on azathioprine. This risk goes away once the medication is no longer being used. Non-Hodgkin’s lymphoma is much less common, and is about four times as likely with azathioprine than without it. However, this risk still equates to about 1 in 1000 after years of taking the medication. Again, once the medication is no longer used, the risk appears to go away. For both types of cancers, older patients (>60 years old) have the highest risk. Having said this, we also have to weigh the risks of any medications against the risks of having uncontrolled ulcerative colitis like surgery and colon cancer. I’m glad to hear your disease is under control.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
December 2017
Q: My adult daughter was diagnosed with CD in 2013 and started Remicade in 2015. For the past 6 infusions she has had an allergic reaction during the infusion. She is given a steroid than the infusion starts again with no problems. She isn't presently having any flare-up symptoms. Does this mean she should stop Remicade? She is also on methotrexate, but has no relief for RA symptoms, which are getting worse. Do you have any suggestions on meds for both Crohn’s and RA?
A: Allergic reactions can occur during the Remicade infusions. Because your daughter has required steroids during the last several infusions, she may want to try pre-treatment with a dose of an anti-histamine, such as Benadryl, and a dose of steroids before the infusion in order to prevent a reaction. Slowing the infusion rate sometimes can also be helpful. Methotrexate is often useful for both Crohn’s and arthritis. Your daughter may want to discuss whether the current dose of methotrexate can be adjusted to better control her joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I am on Remicade and MTX. The side effects are very hard to live with. I feel tired, often dizzy, run down, and weak. I take the MTX on Sunday night via injection. If I was not semi-retired, I would be in trouble because I could not work Monday or Tuesday each week. Is there a point where the healing is sufficient that I can get off this stuff? Is there healing going on at all? My quality of life was better when I was going to the bathroom all the time
A: If you think that the symptoms of fatigue, dizziness, and weakness may be due to the methotrexate, I recommend discussing possibly stopping the medication with your doctor. Methotrexate is often used to prevent antibody formation to Remicade, and your doctor can advise you whether you may be able to try Remicade on its own, or possibly with an immunosuppressant from a different class of medications that may not cause the same problems for you. However, you also make a very good point that it is important to find out if your intestine is healing on your current medication regimen. Some of your symptoms, such as fatigue, could also be caused by ongoing inflammation. Your doctor may do testing include a stool test for calprotecin (a marker of inflammation), a colonoscopy, or a MRI or CT scan to help determine if the intestine has healed.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: My husband with Crohn's is moving to Humira or another biologic. The problem is he keeps running into issues with the TB blood test coming up indeterminate, and although a follow up CT scan revealed no issue, he is being referred to an infectious disease specialist because they are worried about latent TB. How likely is it that my husband actually has latent TB, or is it showing up indeterminate because of his immunosuppressant? What are his treatment options if he does have latent TB?
A: It is very important that your husband has been tested for TB prior to starting a biologic, since if TB were present and inactive, it could become re-activated on biologic medications. You are correct that your husband’s TB test may be resulting as “indeterminate” because of his immunosuppressant. Going to the infectious disease specialist seems like a good way to be sure. If the doctor does find evidence of latent TB, then anti-bacterial medications to treat the latent infection, such as Isoniazid, may be prescribed. Once the treatment for latent TB has been started, patients are able to proceed with their biologic treatment for Crohn’s.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I had resection surgery for Crohn’s disease 3 years ago. I had a scope several months after surgery that showed ulcers at the anastomosis site. My recent scope showed that the number of ulcers has increased but my doctor does not consider it a recurrence. I have started to have GI symptoms. Is this typical to have an increase in ulcers and symptoms? I am worried it is a flare-up. How can doctors tell if this is a flare up or recurrence? I am currently on Entocort and no other IBD medication.
A: I would consider your GI symptoms along with colonoscopy findings showing ulcers as indications that your Crohn’s is active (you could call that either a flare or recurrence, I think both are the same in this case). Entocort (budesonide) is a steroid, and should only be used as a short term treatment to induce remission. It should not be used long term to maintain remission. It sounds like you should discuss starting a more long term medication to treat your Crohn’s with your doctor, either an immunosuppressant or biologic. I think it is important to do this soon so that your disease does not continue to progress---we do not want you to need another surgery down the line.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I had my first Remicade infusion two weeks ago and been off steroids for a week. Is this normal to continue to have really bad pain? The day after the infusion my pain increased. Is my treatment not working or does it take a long time for it to work?
A: Remicade has 3 “loading doses” during which time you are getting to the right level of drug in your system. The drug is dosed at week 0, 2, and 6 initially. Sometimes patients will need a longer period of overlap with steroids and Remicade in order to give the Remicade more of a chance to work. Or, sometimes your doctor may need to adjust the amount of Remicade you are given during the infusion. Also, it will be important to work with your doctor to find out why the pain is occurring—if it is due to the active inflammation in the intestine, a narrow area, scar tissue, or maybe something else. Not all pain is caused by active inflammation, so it is important to know why it is happening so that the correct treatment can be chosen.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: My daughter has had Crohn’s disease for 6 years. Three months ago she developed an anal stricture and has had 2 colonoscopies and dilatations. Is this stretching only achieved by full colonoscopy? The prep is so hard for her to keep down. She currently takes Imuran, Apriso and Entocort but is flaring more and the doctor has recommended a biologic. How are the options for choosing a biologic usually compared? Remicade vs. Stelara vs. Humira etc?
A: Stretching of an anal stricture can sometimes be done via flexible sigmoidoscopy (a short scope into the bottom of the colon). However, some sort of bowel prep would likely be necessary. There are several different options of bowel preps, so perhaps your daughter can work with her doctor to find one that is easier for her to tolerate. In terms of her medication regimen, it sounds like changing medications would be a good idea. Entocort (budesonide) is a steroid medication, and should only be used for a short time to help induce remission, but should not be used as a long term maintenance medication. Also, it is targeted to the end of the small intestine (terminal ileum) and right side of the colon, and is likely not helping the anal stricture area. Apriso is FDA approved for mild to moderate ulcerative colitis, and is likely not effective for Crohn’s disease that is causing strictures. Biologic medications such as the ones you have mentioned are effective for moderate to severe Crohn’s that has failed to respond to other medications. Remicade and Humira are both antibodies directed again TNFa, one part of the overactive immune response that is attacking the intestine. Remicade is given as IV infusions, 3 times in the first 6 weeks, and then every weeks. Humira is a shot every 2 weeks. Stelara is an antibody against two chemicals involved in the immune response, IL-12 and IL-23. It is given as a one time IV infusion, and then a shot every 8 weeks. All are effective, and your daughter’s doctor may be best able to discuss the risks and benefits in her particular situation.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I am 20 yrs old and was diagnosed with UC in 2009. I was on the anti-depressants celexa and amitriptyline to help with my depression. I came off of the antidepressants three months ago. Since coming of the antidepressants my depression, anxiety and colitis all got worse. Are there better antidepressants that can help control my diarrhea and inflammation. I currently take protonix, and welchol.
A: Treatment of depression and anxiety are very important parts of your care, and very important parts of your overall well-being. However, anti-depressants cannot control the inflammation caused by your UC. Amitriptyline may have helped slow the diarrhea, but again it was not treating the underlying immune over-activation that is causing inflammation in your colon. In addition to treating the anxiety and depression, it is also important that you get on effective medication to treat your UC. From the medications listed, it does not appear that you are currently on any UC therapy, and it will be important to work with your gastroenterologist to find an effective therapy for your to control the inflammation, and, in turn the diarrhea.
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Sushila Dalal, MD
Assistant Professor of Medicine
November 2017
Q: The medical field is growing and advancing rapidly through the years, how come the colonoscopy procedure is so invasive as well as the small bowel follow through? Are there diagnostic tests that are much easier on the patients and less invasive? What would be the worst case scenario if a patient were to refuse those types of procedures when suffering from Crohn's Disease?
A: Colonoscopy provides actual visualization of the inner lining of the colon (large intestine) and the end part of the small intestine and allows for biopsies to be obtained at the time of visualization. Reasons for assessing the lining of the colon and the end part of the small intestine in a Crohn’s patient include screening for colon cancer, assessing for Crohn’s healing, assessing severity and extent of Crohn’s, and at times endoscopic treatment of strictures. Small bowel follow through is an oral barium contrast x-ray test, the barium contrast ingested outlines the inner surface of the small intestine. Other similar tests that evaluate the small intestine include CT enterography and MRI enterography. In order to adequately visualize the gastrointestinal tract in radiologic imaging studies oral contrast is needed. Another method to evaluate the small intestine is by capsule endoscopy, a pill with a camera that takes pictures of inner lining of the small intestine. There are specific reasons to use one test over another and the test chosen is usually influenced by why testing is ordered. In a patient that has Crohn’s involving the colon and is due for colon cancer screening, colonoscopy is the only way to screen adequately for colon cancer. When evaluating for partial small obstruction due to Crohn’s, then radiologic imaging is needed rather than capsule endoscopy since a capsule would get stuck in the intestine. The worst case scenario if someone were to refuse testing depends on the reason for ordering the test.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: Before I was diagnosed with Crohn’s I already had a weak immune system. I’m about to start a biologic IV infusions. Should I be wearing a mask after my treatments to avoid getting sick or picking up germs?
A: “Biologic” medications used to treat Crohn’s disease are antibody’s to specific molecules in the immune system that are activated in Crohn’s. Although biologics are down regulating the immune system they are not as potent as chemotherapy used to treat cancers. There is no need to wear a mask when receiving these treatments. Standard precautions should be taken though, such as hand washing and minimizing direct contact with those that are sick. The Centers for Disease Control and Prevention (CDC) has tips on hand washing at: https://www.cdc.gov/handwashing/when-how-handwashing. I would also recommend making sure vaccines for the flu and Streptococcus pneumoniae are updated. Your gastroenterologist can help you determine which additional vaccines you need.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I was diagnosed in 2013 (UC) and currently take Apriso. I was in remission for about 2 1/2 years. I had short-lived flares in 2015 and 2016 that responded to Canasa. Both flares happened around the same time (fall). I think that I might be at the beginning of another flare, and I noticed that it's the same time of year as the other flares. Is there any research to suggest a connection to flares and their recurrence at certain times of year (i.e. seasonal issues)?
A: A very interesting question, and yes investigators have evaluated whether there is a trend with flares occurring during certain times of the year and fluctuating by season. Studies have also looked to see if flares are occurring in a specific seasonal pattern for individual patients (i.e. one patient flares every fall, another patient flares every spring). So far there has not been a consistent finding in studies published on this topic.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I've been taking 6MP for 10+ years, and it's been doing a good job of keeping my Crohn's in check. I recently started seeing a new GI who wants me to switch from 6MP to Remicade or Humira. He said tests are showing my inactive metabolic levels to be in the liver toxic range. I really don't want to do a Remicade or Humira-type drug at this time. Is 6MP truly toxic, and if so, is there another alternative drug besides Remicade or Humira?
A: 6-mercaptopurine (6MP) monitoring includes evaluating a complete blood cell count (CBC) and liver enzymes on a routine basis. If the liver enzymes are elevated from 6MP then usually a change is made such as a reduction in dose or stopping the medication. Sometimes the liver enzymes are elevated and may not be related to 6MP. High levels of the inactive metabolite, 6-MMP, of 6MP in the setting of elevated liver enzymes suggest 6MP is the reason. If the liver enzymes are not elevated and your Crohn’s is in remission then 6MP may not need to be discontinued. All immunosuppressants used to treat Crohn’s have potential benefits and also potential low risks. In addition to infliximab (Remicade ®, Inflectra® ) and adalimumab (Humira®) other medications for Crohn’s include certolizumab (Cimzia®), ustekinumab (Stelara®), vedolizumab (Entyvio®), and methotrexate.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I was diagnosed in May 2016 with Crohn's and take Imuran and Remicade. I am having a hard time sorting out if my meds are causing side effects. I got my maintenance infusion one day and the next day developed a severe headache, flushing, nausea. The acute headache has subsided but I still do not know if this is coincidence or am I not tolerating my meds. Can the medication be causing these symptoms?
A: Occasionally Remicade® can cause an infusion reaction at the time of the infusion or a delayed reaction. More typical symptoms of a delayed reaction include joint pain, abdominal pain and nausea. Other symptoms certainly may occur. Some symptoms may be prevented by giving medications such as acetaminophen (Tylenol ®), diphenhydramine (Benadryl ®), and corticosteroids (methylprednisolone, prednisone, or hydrocortisone) prior to the infusion of Remicade ®. I recommend discussing the symptoms with your treating physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: My husband takes Remicade Infusions every 8 weeks for his UC. He has been complaining of sore muscles, achy joints and tired all the time. He has no sex drive. Is there something we can do for these side effects?
A: Occasionally Remicade can cause delayed reactions that can include symptoms of sore muscles, achy joints and fatigue. Delayed reactions can occur up to 2 weeks after an infusion. Sometimes steroids given prior to an infusion and for several days after an infusion may prevent a delayed reaction. If symptoms are occurring all the time, evaluation for drug induced Lupus is also recommended. Generally the treatment of drug induced Lupus is stopping the offending medication. I recommend discussing the symptoms with your husband’s treating physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I am 35 and had Crohn’s since age 20. After 12 yrs on Pentasa I was switched to Humira 3 yrs ago. It worked great with no side effects and I thought the CD was in remission until being hospitalized with an abdomen abscess infection. I’m on strong antibiotics with 3 weeks to go. After the antibiotics the doctors will figure out what treatment to use going forward. GI says there's indications of fistula. I want to avoid resection surgery. Are there treatment options other than surgery?
A: If there is concern that the abscess will not completely resolve and the area of Crohn’s is short segment of intestine, then surgery generally is preferred since it minimizes significant complications down the road. If the abscess resolves, then medications that can potentially treat your Crohn’s and fistula can be tried. These medications include Remicade ® and 6-mercaptopurine (or azathioprine). In addition to medical therapy sometimes, bowel rest and total parenteral nutrition are also recommended to help heal fistula and Crohn’s.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: How common are emotional problems while on biologic medication? I’ve been on a biologic for 3 years and I've experienced severe mood swings and deep depression and feel like I'm not myself. I get angry for no reason and am very irritable and I cry all the time. I need to take this medicine because I have severe Crohn’s but I can't take the emotional side effects anymore.
A: Emotional problems related to being on a biologic are not commonly reported in the literature. However, there are many other factors to consider in terms of mood and the complexities of having IBD. If you are feeling significant changes in your mood (i.e. depression, anger, anxiety, etc), you should address this quickly with your primary care provider or your gastroenterologist. Working with your providers to assess mood, the factors that may contribute and how to stabilize your emotions is important! They may recommend a review of your medications, a consultation with a mental health provider and/or an assessment with a psychiatrist. You must be your own best advocate. It is necessary to speak regularly with your providers about not only changes in your physical health, but changes in your emotional and mental health. This ensures that you are receiving the right care from a variety of specialties to address all aspects of your health.
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Megan Riehl, PsyD
Assistant Professor of Medicine
October 2017
Q: I have Crohns with strictures all over small and large bowel. I have been taking Mesalamine and Imuran. I will be having an MRI soon to check if there is improvement. Is there anything I can do in terms of Diet and Lifestyle to help heal the strictures?
A: This is a great question – the answer will really depend on where the stricture is located, how many, how tight they are and if there is an active inflammatory component to them or are they the result of chronic changes from disease activity. The recommendations we make for people with Crohn’s disease strictures is to make sure that they are careful about fiber intake and higher-residue food intake. Working with a registered dietitian can help identify a dietary strategy that factors in personal preferences but also safe foods. We recommend small frequent meals, chewing food well, eating slowly, and monitoring for vitamin and mineral deficiencies that can occur due to a restricted diet.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: Does Crohn's Disease affect your menstrual cycle? I used to have regular cycles but for the past two years I have had about 4 cycles. Could the change be caused by the Remicade or steroids I'm on?
A: Crohn’s disease – particularly when it is active with associated weight loss, anemia, and decreased nutrition can result in abnormal menstrual cycles or missed cycles. When the anemia, inflammation and weight are corrected, the cycles do tend to return. The medications used to treat Crohn’s disease don’t typically have a direct effect on the period. However, I would definitely discuss this with your gynecologist to make certain there aren’t other additional issues such as endometriosis or fibroids or hormonal changes that can result in abnormal periods.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: If a patient has been on Azathioprine and balsalazide for 15+ years. What blood tests should be performed for routine monitoring? My husband's GI has been just doing a CBC, but as a result of his yearly physical lab report (with family practice dr.), we learned he has liver impairment. Are regular liver tests standard if you take Azathioprine? Should I be concerned about the level of care he's receiving from his current GI doctor?
A: Thanks for the question – monitoring while on medications is important as we can sometimes pick up on subtle changes and act on them before they become a problem. Balsalazide is generally a very safe and well tolerated medication and doesn’t require strict monitoring like some of the other medications. We do recommend checking kidney function through bloodwork at least every year with something called a metabolic panel or profile. This is because there is a rare condition called acute interstitial nephritis associated with this class of medications – I have to emphasize that this is really uncommon, but it’s simple enough to check kidney function annually with blood work, especially if you are taking other medications that can affect the kidneys or have conditions affecting the kidneys (but you are probably already being monitored for that already. With respect to azathioprine, we do recommend getting routine bloodwork – depending on how long and how stable the dosing regimen has been, it can be every 3-6 months. In my practice, I check a CBC (complete blood count) to monitor the White blood cell count number, which can occasionally be low while on the medicine; the Hemoglobin/Hematocrit (which helps us look for anemia), and the platelets which are a subtle and non-specific marker of inflammation. I also check what’s called a complete metabolic profile to check kidney and liver tests, azathioprine can sometimes increase the liver numbers, so we monitor that as well. Also, we recommend at least annual skin exams while on azathioprine, sun protection and to reapply given the association with an increased risk of skin cancer.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: I'm 25, have Crohn's Disease, and am currently regulating it with diet as I didn't respond well with the different medications. I get sores in my mouth during flare ups, but this time is the worst I have ever experienced. I have sores all along my jaw and cheek inside mouth causing a pretty swollen cheek. It's been like that for almost 2 weeks now. Any suggestions on what to put on the sores or how to get inflammation in cheek to go down?
A: My first thought when reading this is that you may have active Crohn’s disease as oral aphthous ulcers tend to be present during active disease. The first thing I would recommend is to get an evaluation of your disease activity. In terms of addressing the symptoms, mouthwashes or rinses that contain steroids and analgesics such as viscous lidocaine are temporizing measures but treatment of the underlying issue is the key. If there isn’t active Crohn’s disease, other causes can be vitamin/mineral deficiencies – zinc, iron, b12, etc, or viral infections or other autoimmune conditions such as Behcet’s disease. However – I suspect that your Crohn’s disease isn’t as well controlled as it should be and would recommend an evaluation, particularly if you are this symptomatic.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: My son has Crohn's and was on Remicade+MTX from past 5 years. He started with flare-up recently but his Remicade blood levels were normal with no antibodies detected? What does this mean? His blood tests and endoscope showed elevated Eosinophils. Colonoscopy showed inflammation in colon. Does it mean the Remicade became ineffective even with no antibodies? Or could it be due to any other infections or food allergies?
A: It depends on how “normal” the levels are – during active disease, sometime patients require higher dosing and adjustments to still keep them therapeutic. For example, therapeutic is a value > 5, but if someone is symptomatic with a level of 6, they may do better with higher dosing or shortened intervals. If the levels are an acceptable level and there is active disease, then this means that he likely lost response to Remicade/MTX combination – meaning, in simple terms, that his Crohn’s disease outsmarted the medications and he would potentially be better with a medication that works in a different mechanism of action such as vedolizumab (Entyvio) or ustekinumab (Stelara). However, discuss this with your gastroenterologist first.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2017
Q: I have Crohn’s Disease and was told I was non active. Is this different from remission? If so, how?
A: Hard to Say. Today the goal is to treat to target. Target is defined as clinically inactive (clinical remission) as well as endoscopically normal. Clinical inactivity is measured by 1) absence of symptoms, 2) normal biomarkers (CRP and fecal calprotectin) or 3) CDAI score of 150 or less. Clinical inactivity, does not correlate with endoscopic activity. Remission implies clinically inactivity and endoscopically inactive.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I was recently diagnosed with Crohns Disease. My symptoms right now are very mild. Does the disease always at some point get worse? Will surgeries at some point always be needed? Also with my symptoms being so mild now would a stronger drug like Humira be best suited for me to start taking now?
A: Good Question. Prior to the use of biologic agents, studies have shown that in spite of treatment, 80-90% of patients with Crohn’s Disease, will have had surgery over a period of 30 years and many would have had several operations. Since the use of biologic agents (Remicade and Humira) we feel that the natural history of Crohn’s Disease can be changed and surgery averted. The earlier these biologic agents are used, the more likely to prevent complications (stricture and fistulae) which require surgery. Today when patients are first seen, we evaluate activity of flares, as well as the severity of the disease (its longitudinal course of the disease) and if the disease is deemed to be severe, biologics started early may prevent complication that lead to surgery.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I cannot tolerate sulfur medications so I was on 6-MP from 1973 until May 2017. I switched to Humira because the number of Squamous cell cancers I had increased to over 10 per year. I was just diagnosed with Melanoma which the oncologist believes it started before the Humira. I am looking for alternatives to both 6 MP and Humira. What are treatment options for CD following a Melanoma diagnosis? Are they any clinical trials or new medicines that may be appropriate?
A: The use of immune modulators, such as 6mp and azathioprine have been associated with up to a tenfold increase in non-melanoma skin cancers. The anti TNF biologics (Humira and Remicade) may be associated with a very slight increase in melanoma skin cancers. Use of other agents will depend on the stage of melanoma and the surgery that was done. Generally, methotrexate has not been associated with lymphoma or solid cancers and the newer drugs such as Vedolizumab (Entyvio) and Ustekinumab (Stelara) have not been associated with increase in melanomas. Entyvio is gut specific and probably the safest alternative.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I have had Crohn’s since 2009 and have an anal fistula. I have been on Imuran, Pentasa and had an allergic reaction to Humira injections. I had an allergic reaction at the injections site but the injection did work. Would this response make me allergic to all TNF Blockers? What would be the next course of action besides surgery?
A: Local reactions to Humira injections would not prevent you from using Infliximab (Remicade) which is given by I.V. Remicade is the only drug shown in double blind studies to be effective in healing fistulae. In addition, use of antibiotics (cipro or flagyl) and Methotrexate can be used in combination, and insertion of setons and drainage of abscess is important. Most important is cooperative treatment with colon and rectal surgeons to be successful in treating fistulae.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: Can using Remicade or other biologic contribute to developing warts on hands and feet?
A: Use of Remicade and other biologic agents have not been associated with developing warts on hands and feet.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2017
Q: I was diagnosed with ulcerative colitis in 2013 and then indeterminate colitis in 2015. I was put on prednisone and azathioprine. My doctor left and I was sent to a new doctor. They ordered colonoscopy and CT which came back showing no IBD. Can this happen because of the medication? All previous scopes, biopsies, and scans since 2013 have come back positive for IBD. I am very confused. Is it possible to get different diagnosis over time?
A: This is a very interesting thing that we have been seeing in some patients. We call it histologic normalization. We recently published something from the University of Chicago with our findings in many patients. See link below. Overall conclusions here: https://www.ncbi.nlm.nih.gov/pubmed/28238954. Histologic normalization of colonic mucosa can be used as a clinical endpoint for patients with UC. We associated histologic normalization with increased odds of relapse-free survival compared with endoscopic healing or histologic quiescence. Further studies are needed to determine whether histologic normalization should be a goal of treatment for patients with UC.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I was recently prescribed 1g Asacol foam enema. I was on the Salafolk ones for about a week but I was told it was the same stuff so didn’t really worry. I’ve been having a tougher time with these Asacol ones. I just can’t seem to hold them in as long, some nights they seem to come out right away. My usual time of holding them in at the moment is about an hour before I need to go. Is this enough time for the medicine to work?
A: Typically the foam based formulation is easier to hold than the liquid formulation. It should get better the longer you are on therapy. If it is not improving, I would discuss with your physician about a change of the formulation back to the liquid if that was easier to hold.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I’ve looked at the drug profile for ulinastatin and it seems as though it would be a good fit to treat severe, refractory Crohn's disease. It may also stave off fibro stenosis for those with a stricturing phenotype administered post-op following resection. I wonder why more studies haven't been conducted? What are your thoughts on this as a treatment option?
A: This is not a therapy I had heard of until this question. I was able to find a few in vitro studies, but no clinical trials are currently being conducted. I have passed this along to our clinical trial team as they may have more information. I am sorry I don't have more information for you. http://onlinelibrary.wiley.com/doi/10.1111/j.1744-9987.2011.00967.x/full#references
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I was diagnosed with Colitis last year. I was first prescribed Pentasa and now Mezavant both started to work for 3 months but not anymore. While on both medications I found sex painful. I went to see a Gynecologist who told me that there was a lump on the left side where I felt the most discomfort. Could my colon be inflamed? I'm lost as to what doctor to see and what my options might be.
A: If your gynecologist felt a lump they should have followed this up with an ultrasound. It is possible that your colon is inflamed making intercourse painful. I would follow-up with your gynecologist and your gastroenterologist to ensure that you have healing on these medications.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I was diagnosed with CD 10 years ago at age 26. The disease is classified as mild to moderate to date. I have managed it with only two antibiotic courses as treatment. My doctor wants me to treat the disease when most days I don’t think my symptoms warrant treatment. In addition the treatments risks don't seem to outweigh the benefits for me. How do you make the decision what treatments are better than the disease itself and which treatments are best for mild to moderate case of Crohns?
A: Mild to moderate Crohn's disease should be treated. As even when you don't have symptoms you likely have ongoing inflammation what we call "subclinical" inflammation. If your disease mild to moderate depending on the location of the disease and whether you have any stricturing or abscess/fistula there are multiple medications that can be recommended. You should follow-up with your gastroenterologist to discuss treatment options. Untreated disease overtime can require surgery, medications prevent surgery and progression of disease including colon cancer related to Crohn's disease in the colon.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I have not had a bowl movement in almost a week. Can this be a problem associated with Crohn’s Disease? What should I do?
A: Constipation can be associated with Crohn's disease. However this type of problem should be evaluated with your provider.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I've been on sulfasalazine for 22 years with no problems. My uc has never been severe as far as my symptoms. At 62 years old, I'd like to stay on sulfasalazine. After my recent colonoscopy my GI wants to try Entyvio. I'm very reluctant and can't figure out why. My former GI retired and this is a young new GI. Not doubting his experience but I'm leaning toward staying with sulfasalazine. Are there any long term side effects of sulfasalazine that would justify my GI changing to Entyvio.
A: Since your diagnosis we have changed the way we manage disease. While sulfasalazine is a very effective therapy to manage ulcerative colitis, I assume that your new provider found active inflammation on your colonoscopy (despite you feeling well), we call this subclinical disease. Currently our goals are to treat to mucosal healing which means you feel well and your colon looks healthy. Entyvio is a safe therapy that only impacts the immune system in the gut. If your provider is recommending escalation of therapy it is likely due to the fact you have ongoing inflammation in your colon. I would address your concerns about the new therapy with your new provider or seek a 2nd opinion.
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Jami Kinnucan, MD
Assistant Professor
July 2017
Q: Can Crohn's Disease or Humira or both be linked to gum disease and skin abscesses?
A: Good question. Crohn’s disease can be associated with gum disease. Gum disease would not be a common association with Humira. With regards to skin abscesses, if you’re referring to abscesses around the anal region, then Crohn’s disease (but not Humira) can definitely be associated with this. As far as skin abscesses on other parts of the body, this can occur with immune suppression of any kind including Humira. If your gastroenterologist has not evaluated the skin sores already, it would be a good idea to speak to him/her.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have Crohn's Disease and sometimes develop canker sores that form on the tongue, lips, and gums. Can you explain what they are and how they are treated?
A: Crohn’s disease, either directly or indirectly can cause oral sores. Oral sores are rather common, present in 20-50% of Crohn’s disease patients. The sores are generally just breaks in the lining of the mouth that result in an ulcer. Since Crohn’s disease can affect any part of the gastrointestinal tract from your mouth to the anus, these sores may be a result of the disease. Crohn’s disease can also result in nutritional deficiencies (i.e., folic acid and other B vitamins) that can make a patient more prone to mouth sores. Additionally, methotrexate, a medication used in Crohn’s disease, is a common culprit for mouth sores. Generally, if the sores are from Crohn’s, treatment of the Crohn’s itself can causing healing of the ulcers. If you’re taking methotrexate, you can increase the amount of folic acid taken on the day of the methotrexate itself (to say 5 pills that day). If neither of these are the issue, your doctor can evaluate for nutritional deficiencies that may be playing a role.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I was told one year ago that I had ulcerative colitis. Is constant pain, cramps and an extended abdomen common symptoms of the disease?
A: Ulcerative colitis can present with a variety of symptoms including abdominal pain and bloody diarrhea. However, symptoms don’t always indicate that the ulcerative colitis is active. The reason is that several other disorders can also cause the symptoms your describe. Your doctor through various objective tests (i.e., imaging, endoscopy, and labs) can determine if it is your ulcerative colitis or another disorder that is contributing to your symptoms.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: How definitive is a diagnosis of Ulcerative Colitis? I have been in remission for 11 years, and have not taken any medication for 5 years. Does it make sense to get reevaluated to see if this diagnosis can be removed from my medical history?
A: Thanks for your question. Without seeing the records, your first question is a difficult one to answer. Occasionally, the diagnosis of ulcerative colitis may be more difficult to make. Having the diagnosis of ulcerative colitis in your records can be challenging for several reasons. If you have no symptoms and your colonoscopy continues to show no active colon inflammation, then your disease may be in remission. I would discuss the validity of the ulcerative colitis diagnosis with your gastroenterologist who has access to your previous records.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I am 40 years old and have had ulcerative colitis for 30 yrs. I've been on 5ASAs most of the time with Prednisone to help on the occasional flare-up (once every few years). Recently flare ups have been coming back more often (2 flare ups in the last 9 months) and my doctor wants me to change to a stronger medication. He has suggested either 6MP or Humira. Does one work better in terms of response, safety and side effect? How do I choose one over the other?
A: Great question. The side effect profile and safety issues for 6-MP and Humira are actually very similar. 6-MP is typically started with prednisone because it takes 2-3 months to work. Humira usually starts working in 4-6 weeks and may require a shorter course of prednisone before it kicks in. As far as which agent is more effective, this may vary from patient to patient. In general, Humira appears to be more effective. The choice of one over the other really depends on multiple factors including choosing between injections vs. pills, the labs sent prior to starting these therapies, and insurance coverage.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have had a rash around my mouth and now has moved around my eyes for about 9 months now. The doctors thinks it is perioral dermatitis, but they aren't sure? I have been on remicade for about two years and currently on prednisone to reduce lip swelling and the rash goes away. The rash comes right back after I’m off the prednisone. How can this condition best be treated?
A: Thanks for your question. I would see your primary care doctor and perhaps a dermatologist as the rash could represent other diseases apart from inflammatory bowel disease. After you obtain a more formal diagnosis of the rash, a better treatment regimen may be recommended. Staying on prednisone for the rash is not the ideal treatment strategy.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2017
Q: My son has Crohn's and IBS. We have started really focusing on his diet, more veggies less meat and clean, no preservatives. Is there a certain diet that is better than others?
A: Diet and nutrition definitely are important in IBD management. However, more research is needed to better understand the impact of specific foods and diets. One interesting study that recently came out (though looking more at UC patients) showed that patients who ate more dairy based fats or coconut oil were more likely to have a flare. There is also some basic science data to suggest that red meats are more pro-inflammatory and foods with emulsifiers (found in certain processed foods) can breakdown the mucous layer that protects the gut. There is also great interest in the Specific Carbohydrate Diet (SCD) which is about to be formally studied in a trial sponsored by the Crohn’s and Colitis Foundation. Ultimately, each person’s case is different and one food or diet that may improve or worsen symptoms for one patient may not work for another patient. I frequently recommend consultation with an experienced nutritionist to my patients.
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Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: Is there any treatments for healing fistulas besides Remicade?
A: Yes, other anti-TNF agents such as adalimumab can help treat perianal fistulas. There is some data from the recent national gastroenterology meeting that ustekinumab can help heal fistulas as well and some data on vedolizumab. Recently, studies on stem cells that are directly injected into fistulas show a lot of promise. In severe cases, surgery can be needed.
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Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: Are there any drugs besides Biologics that are being investigated?
A: Yes there are new oral drugs that are in late stage trials or likely soon to be approved. For ulcerative colitis, tofacitinib is a small molecule that blocks inflammation through the JAK pathway and may be approved by the FDA soon. For Crohn’s disease, mongersen is an oral agent that works locally in the intestine to alter inflammation through a novel target in the TGF beta pathway. This drug is in phase 3 trials currently.
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Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: I'm 15 and in high school. I wanted to know if I can get some advice on how to handle my Crohn’s symptoms in school. How to deal with embarrassing situations of needing to go to the bathroom in school and in public.
A: Proper preparation can help with the stress or anxiety of a potentially embarrassing situation. Make sure you have an “emergency kit” in your locker or school office. Tell a trusted friend or teacher where you keep it, in case you need someone to bring it to you in the bathroom. Common items for the kit include: wet wipes, underwear, pants or leggings, large size freezer bag to transport soiled clothes, hand sanitizer and perhaps some Poo-Pourri or air freshener. It is important to remember, you may NEVER need these items, but it can feel reassuring to know they are available. In terms of frequent or urgent bathroom use, speak to your teachers about your IBD and let them know you may need to leave the classroom without permission or a pass. If they know ahead of time, this can take away the focus of your bathroom use and normalize the experience. It is important to de-stigmatize your IBD and therefore, talking with friends and teachers can help them to understand your needs and provide you with support when needed. There are also options for accommodations through the 504 Plan that you, your medical provider, teachers, parents can develop if your IBD and treatments are affecting your school performance or experience. For example, you may be able to “stop the clock” during exams if you needed to use the bathroom. There can even be ways to keep an emergency kit in or very close to the school bathroom you use. It's important to remember that stress doesn’t help anything. Therefore, if you are feeling embarrassed, reach out for support. Often times we experience more anxiety related to the possibility of a situation happening, and forget that whatever you are faced with…you will be able to cope. Having a good support network can make coping much easier. For additional information about being a teenager with IBD, check out: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf
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Megan Riehl, PsyD
Assistant Professor of Medicine
June 2017
Q: My Daughter is 13 and was diagnosed in March 2017 with very aggressive CD. She is on Remicade, Metronidazole, steroids and an antibiotic. She has a persistent cough that usually makes her throw up. What are some treatment options to get rid of the cough?
A: There seem to be 2 questions here, first, why does your daughter have a persistent cough, and second, how can it be treated. I would suggest that the first is the more critical question to address as the second will almost certainly depend on it. A cough is quite non-specific as it may reflect active infection, non-infectious inflammation or injury, hypersensitivity following acute illness, or tic-like behavior among others. The association with the vomiting is not too helpful in differentiating as while some coughs are classically associated with vomiting, some individuals simply vomit due to stimulation of the gag reflex while coughing. Important questions to consider would be duration of the cough, presence of cough while asleep or not, associated features of illness such as fever, fatigue, or weight loss, and travel or sick contacts leading up onset of the cough. As you mention both metronidazole and an antibiotic, I’m curious whether you meant to write methotrexate- the reason I point that out is that methotrexate has rarely been associated with inflammation in the lungs. Inflammatory bowel disease on its own may also lead to inflammation in the lungs as well, and being on multiple medications that suppress the immune system such as steroids and Remicade further increase the risk of infection. All that said I would say the most important thing would be to make sure you communicate the presence of the protracted cough to your daughter’s physician. If ultimately it is simply a cough without associated inflammation or infection there is unlikely to be any particular medication to prescribe, but breathing exercises and other relaxation techniques may be helpful in enabling a degree of suppression.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: My 15 year old son was diagnosed with Crohn's in early May. The doctor started him on Pentasa but he developed hives all over body. They took him off Pentasa and started him on Prednisone. He is taking Benadryl for the hives but they have not stopped. He is also on VSL3. I'm wondering if VSL3 could cause the hives or do we just need more time for the Pentasa to get out of his system.
A: Significant skin reactions, while relatively common with sulfasalazine, are uncommon with mesalamine (Pentasa). When skin eruptions are related to a particular medication, discontinuation of that medication is the most effective therapy. It can be very difficult to determine the specific cause of hives, but I would not expect persistent hives, especially after receiving steroids and Benadryl, if Pentasa were the sole cause. There are a number of skin conditions associated with Crohn disease and it would be important to follow-up with your son’s gastroenterologist or dermatologist to ensure that what is thought to be hives is not actually something else. With respect to the VSL#3, it’s difficult to say; if it was started around the same time as Pentasa and around the same time as the eruption of the hives it would seem reasonable to trial off it as well.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: My 13 year old daughter has crohn's disease, she was diagnosed 2 years ago after we noticed she wasn't growing. She in basically in remission with the help of her Remicade infusions every 6 weeks. She has been getting these infusions from an outpatient hospital setting and now our insurance notified us that we now have to do at home infusions for her. Is there a risk in doing infusions at home instead of outpatient? How do we find a home infusion service in WI?
A: It’s a bit difficult to answer this question as I am in different region of the country. That said I have many patients receiving home infusions of Remicade who are doing very well and love the convenience of it. There do not have to be any inherent risks in having home infusions versus outpatient infusions assuming you have experienced professionals administering the medication who are prepared to deal with the possibility of allergic/infusion reactions; however, that is quite an assumption. I would suggest touching base with your insurer to see which home infusion companies are available, and then reach out to your physician to see if they have any experience working with any of those companies. Be aware that some insurers may “require” home infusions in theory, while in practice the local infusion companies may not provide services for children- if that is the case some “education” of the insurer may be necessary.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: I'm 16 years old and I was recently diagnosed with Crohn’s Disease in early May. I have been experiencing what they call "moon face" due to the prednisone I've been taking. Is there any way to reduce the swelling? I will start my Remicade infusions soon and I was wondering about the side effects of the medication.
A: You raise an excellent question and one that is bothersome for many. As you seem to be aware, what is described as a “moon face” is a recognized side effect of prednisone. Unfortunately, I am not aware of any way of addressing this aside from coming off prednisone. It sounds like a plan is already in place to start treatment with Remicade which should allow for relatively rapid tapering of the prednisone.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
May 2017
Q: Are FMT clinical trials only available for people with c-diff and uc? How can I find a clinical trial for FMT for UC?
A: Currently Fecal Microbiota Transplants (FMTs) are only allowed for treatment of certain C. difficile infections. However, there are ongoing studies of FMT for Crohn's disease and ulcerative colitis, as well as other conditions. Those registered in the United States are listed on www.clinicaltrials.gov. Some studies which are taking place abroad are also listed on this website.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: What are the research finding for probiotic VSL#3 for Crohn’s and Colitis. Has this been successful for patients?
A: On the whole, studies of probiotics for IBD have been disappointing. This may partially be attributed to the small sizes of the studies, and the varied doses and types of probiotics studies which makes it hard to aggregate studies for comparison. With that being said, almost universally, studies have shown there are no to minimal adverse effects from taking probiotics, so I don't discourage my patients from trying them as long as (1) they can afford them and (2) find them helpful. Of the studies that have been done, some of the most promising are those for VSL#3 for use in IBD patients with pouchitis. Even then, the studies were small and results were varied.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: Is skin cancer a risk with Remicade too or just the 6M?
A: There are some studies that have suggested that TNF-inhibitors (such as Remicade), can increase the risk for skin cancers – in particular non-melanoma skin cancers. However, some of the studies are conflicting, in part because patients on anti-TNF inhibitors are often other medications such as thiopurines (e.g. 6-mercaptopurine and azathioprine) which can also increase the risk of skin cancers. Further some studies have shown that having IBD (in and of itself) may increase the risk of skin cancers. While we await further studies to clarify this topic, I that IBD patients protect their skin by avoiding excessive sun exposure and wearing daily sunscreen, and for my patients on TNF-inhibitors and thiopurines I also recommend annual skin cancer screening exams.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: LDN (Low dose Naltrexone) has been a game changer for my 14 year old daughter with Crohn's. Is LDN considered a promising treatment options for Crohn’s & Colitis patients?
A: Early studies for the use of low dose naltrexone in Crohn’s disease have been promising. However, these studies have either been very small in size or designed with a comparison arm. Before it can be considered as a more mainstream treatment, more studies need to be done.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
April 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
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Megan Riehl, PsyD
Assistant Professor of Medicine
April 2017
Q: Our 14 yr old son was diagnosed with CD in 7/2016. He was having back pain and had an X-ray. In Jan 2017 had another X-ray and compared to the July one, he had major deterioration even though he hasn't had IBD issues in months. He has compression fractures in his spine. He was on steroids for 2 months but has been doing well on Remicade. He has gained 22 lbs but no growth in height. The dr wants to put him on bisphosphonates. Is this a standard treatment in CD patients with a fracture?
A: Vertebral compression fractures can be caused by osteoporosis, trauma, or diseases affecting bone (pathologic fracture). The trauma/injury to the area would likely need to be substantial and you did not mention any major accident or injury to the area so low density most likely the issue. Other bone diseases could play a role especially given the short time since diagnosis and should be excluded. Young patients should get a bone age and a bone density shortly after diagnosis to see if there is delay in bone growth and to see what the baseline bone density is. There could have been IBD going on that affected the bone that was not severe enough to cause obvious gastrointestinal symptoms prior to diagnosis. If there was a fracture but bone density was not low, bisphosphonates would not be indicated. IBD can affect bone density for multiple different reasons with about half of patients showing a significant reduction in their bone mass. Bisphosphonates would not treat his current fracture but would try to address the low bone density so a future fracture is less likely. This class of medication is not commonly used in pediatrics especially while bone is still gaining in height and mass. Its use is more often reserved for patients with specific bone diseases. It is thought to be reasonable for use in chronic illness if there is history of multiple low trauma fractures or a vertebral fracture history combined with a very low bone density. I would say the next appropriate step is an appointment with a pediatric endocrinologist. Their role is to help advise use of these medications and help weigh risk and benefits and provide other options as well as rule out other issues that could be playing a role. One can also try to improving bone density with increasing weight bearing exercise. This could be done with a physical therapist to make sure this is done safely in someone with a fracture history. Having optimal control of the IBD.
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Philip Stein, MD
Attending Gastroenterologist, St. Christopher's Hospital for Children
March 2017
Q: I understand that patients can lose response to biologics after a few years? Is it worth the risk of taking a biologic given the potential side effects like cancer or PML?
A: All medication is judge by risk versus benefit. Risk of cancer with biologic medications is no longer considered significant. The risk of PML was seen with only one biologic - natalizumab (Tysabri) - which has since been replaced in treatment protocols by vedolizumab (Entyvio) and that drug has not been associated with PML.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have IBD and I’m looking for good breakfast ideas. It seems no matter what I eat in the morning it goes right through me.
A: I would recommend first discussing with your physician whether your disease is well controlled and in remission or whether you have active disease. Ideally if your disease is well controlled you should be able to tolerate any type of breakfast. You are not alone. Many patients with active disease tend to have most bowel movements first thing in the morning or after breakfast. I would recommend minimizing caffeine and hot fluids which both can accelerate intestinal transit. Fatty foods may also result in bowel movements soon after eating. Many of my patients anecdotally tolerate oatmeal or cream of rice the best. Bananas and peanut butter also seem to be well tolerated. For patients who have narrowing in the bowel, smoothies are also great breakfast options.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: In ulcerative colitis patients, do most cases of colorectal cancer start as polyps or dysplasia? How fast does dysplasia develop and grow to cancer?
A: In patients with IBD the sequence of polyp to cancer, if related to IBD, may not follow the same sequence as regular polyps. Colorectal cancer in IBD starts with some type of lesion, but these may be very difficult to see. The timing of dysplasia going to cancer may also be accelerated. For this reason, we recommend frequent screening – every 2 years in all patients after 10 years of disease with Ulcerative Colitis, and in Crohn’s Colitis if more than one third of the colon is involved. Patients with Primary Sclerosing Cholangitis (PSC) need yearly colonoscopies as their risk for colon cancer is particularly high. As lesions predisposing to cancer in IBD may be flat rather than look like polyps, it is also particularly important to have the best preparation possible, and to have a colonoscopy performed by a physician experienced in the care of IBD patients.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I have CD for many years. I recently had colonscopy #5. Since then (3 weeks) I'm feeling like I'm still doing the prep!! Urgent rush to the toilet at all hours day and night for a big rush of blood or brown water! How do I make this symptom quit?
A: I recommend calling your provider to discuss whether you are having a flare of your disease or if you may have concurrent c.difficile infection. Colonoscopy preparations should not cause your IBD to flare, but may alter your gut flora. I would recommend discussing your symptoms with your provider.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I am scheduled for a colonoscopy. What test result information is important to know? What questions should I ask the doctor following the procedure?
A: Colonoscopies are done for two reasons: a. Screening & Surveillance for colon polyps and cancer. In CD and UC, after having the disease for 8-10 years, screening colonoscopy is recommended every 1-2 years. b. Determining extent and severity of disease and response to treatment. In regards to all colonoscopies, patients should ask the physician performing colonoscopy: a. Was my prep adequate for full evaluation? b. Was colonoscopy performed all the way to the cecum with evaluation of the terminal ileum? c. Were any biopsies done?
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have CD and will be taking antibiotic for a non-GI issue. Is it appropriate to take a large dose of probiotics prior, during or after treatment with antibiotics? Can the use of antibiotics potentially cause a flare up?
A: Use of antibiotics can potentially cause a flare of CD if it triggers a c-difficile infection/colitis. Antibiotics by themselves do not cause CD flares. Florastor® has been approved by the FDA to use with antibiotics to prevent antibiotic induced diarrhea at a dose of 250 mg twice daily for the length of antibiotic use.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have chronic UC which is in approximately 85% remission. Would it be safe to have a total hip replacement and take Coumadin for 6 weeks? Could Coumadin trigger a flare up in some uc patients?
A: There is no contraindication to using Coumadin in patients with chronic UC. Coumadin is safe if anticoagulation is kept within therapeutic range for the condition it is being used to treat. Coumadin does not cause chronic UC flares.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have severe ulcerative colitis of the entire large colon. Is it safe to use prednisone 20 mg daily, lialda (mesalamine) 2.4 gm 2x daily and sulfasalazine 1,000 mg 3x daily together? I'm worried about taking so much medication.
A: The goal in the treatment of patients with IBD is to use steroid sparing medications as much as possible. If you have been on steroids long term, escalation of your therapy should be considered. It is not unusual for patients to be on both steroids and mesalamines while trying to get in control and this is safe. I typically do not have patients both on lialda and sulfasalazine but your provider may have reason for this – perhaps joint pain. Currently there should be no safety issue in the combination that you are currently presently taking.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I am 28 years old and was diagnosed with UC in May 2016 (first flare). I had a second flare in Sept 2016. I was hospitalized both times. I am now on 5 mg of prednisone (every 3 days) and salazopyrin (3mg pd). I feel that a flare might come again. I feel tired and have gas. This potential 3rd one comes 4 months after the last one. Which is exactly the same amount of time between the first two. How can I manage my disease proactively?
A: Given two hospitalizations in a year, I think you should discuss with your provider considering escalation of therapy – proactively your provider can check blood and stool tests to see if there is any active inflammation, a repeat endoscopic evaluation could be in order as well. The goal is that you get off steroids to avoid long term complications of these medications and that your disease be more deeply controlled. Many patients also monitor their symptoms closely by journaling or using apps such as GI Buddy – and this can give helpful information to your provider.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: What percentage of IBD patients have both Crohn's and colitis? Are they both diagnosed the same way?
A: 1a. Patients with IBD cannot have both Crohn’s and Ulcerative Colitis. The diseases are diagnosed/differentiated by history, physical exam, blood tests and most importantly colonoscopy. 1b. Crohn’s disease and spastic colitis (IBS) is seen in 15-20% of the general population and IBD does not exclude IBS from occurring. In other words, you can have IBD and also IBS. IBS is diagnosed by history and using the “Rome Criteria”. 1c. Statics for the occurrence of Crohn’s colitis in patients with Crohn’s disease are: Crohn’s Ileitis - 30% Crohn’s colitis - 25-30% Crohn’s Ileocolitis - 40% Therefore, Crohn’s colitis is seen in 70% of patients and diagnosed by colonoscopy/biopsy.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
February 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Do patients have better control of their disease when they communicate with other patients? (through support groups, camps. Online forums, etc)
A: This is an important arena of study, in that support groups can be very helpful at reducing anxiety and depression, factors we know are associated with disease course. Prior literature has shown that summer camps and mentorship programs in pediatric IBD have been effective for parents and children alike. Social interaction has also been associated with improved quality of life in IBD. Patients' experience of helplessness has been shown to reduce their ability to benefit from social support. Better studies are needed in order for us to design the best resources for patients. Studies of social support, outcomes and preferences for support could be designed in CCFA Partners.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Is there an association between comorbidities of neurological conditions and IBD? Dysbiosis is also linked to recovery from neurologic conditions, could this be a link?
A: Neurologic disorders associated with IBD are thankfully relatively rare. It is estimated that 3% of patients with IBD have associated neurological complications. Neurological complications appear to be more common in men, and occur after IBD diagnosis. Some of the therapies used for the treatment of IBD can be associated with increased risk of neurological complications (such as infections or rarely multiple sclerosis-like effects). Some therapies (including long-term use of some antibiotics) can be associated with peripheral neuropathy, which is a burning pain in extremities. Additionally, increased inflammation from IBD does put patients at risk for blood clots, which can also affect the brain. The most common neurologic complaint of patients with IBD is headache (>50% of patients) and migraines are reported as well. Another neurological complication that has been associated with IBD is restless legs syndrome (in up to 30% of patients with IBD). We have not previously collected information on neurological conditions in CCFA Partners www.ccfapartners.org . These can be difficult diagnoses to make and often require the assistance of a neurologist. A better understanding of neurological complications in IBD is an important arena of study.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Are there any IBD patients on the paleo or specific carbohydrate diet? Has this diet positively affected your symptoms?
A: The question of dietary management of IBD is of utmost importance to patients and providers alike. In response to a prior question posed on this portal on the specific carbohydrate diet (SCD), CCFA Partners, the CCFA and the Patient Centered Outcomes Research Institute have funded an important study to better understand the clinical benefits of SCD. This study, led by Dr. James Lewis from University of Pennsylvania, will randomize patients to either the SCD or a Mediterranean diet. Over the course of the study, all food will be provided through a caterer to help with adherence to the diet. Important outcomes on symptoms and on markers of inflammation (in the blood and stool) will be used to measure response to the diet. This study will be launching this year. Citizen scientists from the CCFA Partners community posed the original question, and are now on the research team for this important study. Stay tuned as we learn more about the topics that you are most interested in!
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: What is the long term effectiveness of a bowel resection as a treatment? What factors lead to longer period of remission?
A: Surgical treatments for CD include bypass, resection, and strictureplasty. The aim of surgery for CD has shifted away from radical operation (used in the 20th century), to minimal surgery, intended to remove the least amount of bowel possible. The surgeon must assess which procedure is most suitable at each area of the disease (this may include a combination of areas of resection and separate areas of strictureplasty). The recurrence rate of Crohn’s disease (CD) post-operatively is unaffected by the width of the margin of resection (meaning if you remove more bowel, this does not reduce the rate of recurrence). The reoperation rates for recurrence of CD have been reported to be 10%-30% at 5 years, 20%-40% at 10 years and 40%-60% at 20 years after surgery. More recently, there have been 3 factors that have been shown to reduce the rate of recurrence of Crohn’s disease after surgery. These factors include 1) using medications post-operatively to prevent recurrence (medications such as immunomodulators and biologic agents have been shown to be effective at reducing recurrence on colonoscopy), 2) performing a colonoscopy within 6 months of a surgery and adjusting medications based on the results and 3) avoiding smoking. A large study called the POCER study was able to show improved outcomes in CD (less recurrence) when colonoscopy was performed at 6 months and adjustments made.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Our 14 yr old son was dx with CD in 7/2016. Also having back pain and had an X-ray. In 1/2017 had another X-ray that showed major deterioration even though he had no IBD issues in months. He has compression fractures in his spine. He was on steroids for 2 months but has been doing well since starting Remicade. He’s gained 22 lbs but no height growth. The dr. want to put him on bisphosphonates. Is this a standard treatment in CD patients with a fracture? What else should we look into?
A: Vertebral compression fractures can be caused by osteoporosis, trauma, or diseases affecting bone. Other bone diseases could play a role especially given the short time since diagnosis and should be excluded. Young patients should get a bone age and a DEXA scan shortly after diagnosis to see if there is delay in bone growth and to see what the baseline bone density is. IBD that was not causing obvious gastrointestinal symptoms prior to diagnosis is possible. If there was a fracture after an accident but bone density was not low, bisphosphonates would not be indicated IBD can affect bone density for multiple different reasons with about half of patients showing a significant reduction in their bone mass. Bisphosphonates would not treat his current fracture but would try to address the low bone density so a future fracture is less likely. This class of medication is not commonly used in pediatrics especially while bone is still gaining in height and mass. Its use is more often reserved for adults or patients with specific bone diseases. It is thought to be reasonable for use in chronic illness if there is history of multiple low trauma fractures or a vertebral fracture history combined with a very low bone density. I would say the next appropriate step is an appointment with a pediatric endocrinologist. Their role is to help advise use of these medications and help weigh risk and benefits and provide other options as well as rule out other issues that could be playing a role. One can also try to improving bone density with increasing weight bearing exercise. This could be done with a physical therapist to make sure this is done safely in someone with a fracture history. Having optimal control of the inflammatory bowel disease itself will decrease cytokines which are bad for bones as well as helping avoid steroid use. Good nutrition with vitamin d and calcium with additional vit d as needed and avoidance of smoking and alcohol are also helpful
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Philip Stein, MD
Attending Gastroenterologist, St. Christopher's Hospital for Children
January 2017
Q: I have Crohn's and had a ileo-colic resection of about 17 cm two years ago. I am in remission and eat a healthy diet but my Vitamin D and B-12 are borderline low. (B-12 209 pg/ml, D 23 ng/ML) Do I need B-12 shots, or how much oral supplements do I need?
A: Vitamin B12 is an important vitamin needed for red blood cell production, proper functioning of nerves, and even making DNA in new cells. The human body cannot make its own vitamin B12, and in the diet vitamin B12 comes in the form of animal based foods. Most B12 is absorbed in the distal terminal ileum of the small intestine, an area often affected by Crohn’s disease. Lab measurement of B12 levels is not exact, and we usually aim for levels >300 pg/mL in order to be on the safe side because B12 is so important. The most reliable method of supplementing vitamin B12 is through shots, but it is also possible to take high dose pills (1000-2000mcg a day), pills that go under the tongue and are directly absorbed into the blood, or by nasal spray. No good studies have been done comparing the efficacy of these methods in Crohn’s disease patients, so it is important to have the B12 level re-checked after you and your doctor have selected a way to supplement your levels. Vitamin D is important for bone health, and may be involved in the immune response as well. We generally aim for vitamin D levels above 30ng/ML, which can likely be achieved by taking a daily oral supplement of Vitamin D3 600-1000 IU daily if you level is between 20-30.
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Sushila Dalal, MD
Assistant Professor of Medicine
January 2017
Q: My 62 year old mother was diagnosed with UC a year and a half ago and has developed pyoderma gangrenosum on her leg. She has four lesions ranging from the size of a nickel to the size of tennis balls. She recently started Humira. How long on average does it take for the lesions to heal? Are there cases where the skin condition does not heal?
A: Pyoderma gangrenosum is a rare skin condition that can be associated with UC. Because it is rare, there is not much data available. We do know that the rates of response to Infliximab (Remicade) and Adalimumab (Humira) have been high, though unfortunately, nothing is 100%. The information we have is limited to a few people, but it suggests that patients often saw some improvement with a few weeks of starting an anti-TNF medication like infliximab or adalimumab. However, complete healing often takes several months.
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Sushila Dalal, MD
Assistant Professor of Medicine
January 2017
Q: My daughter has hidradenitis suppurativa which the doctors think is associated with the Crohn's Disease. She has flare ups in her vaginal area as well as her armpits. Can this be a symptom of Crohn’s disease and if so, how is it treated?
A: HIdradenitis suppurativa(HS) is not a symptom of Crohn’s disease, but there does seem to be some relationship between the two disease—people who have one of the two conditions are more likely to also have the other. HS is often treated by dermatologists, as it is a condition of the skin. Some possible treatments include antibiotic creams, steroid injections, or oral antibiotics. For more severe disease, treatment with medications that are also used for Crohn’s disease, such as infliximab (Remicade) and adalimumab (Humira) have also been used.
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Sushila Dalal, MD
Assistant Professor of Medicine
January 2017
Q: I'm female with acute CD in the terminal ileum. I was on Remicade for 8 years with great success, but am now in the midst of my first flare-up. The doctors tell me that I have an abscess, a developing fistula, and a pretty severe stricture in the ileum (which is my big problem area). I'm currently on antibiotics for the abscess, TPN, and a clear liquid diet. My doctor wants me to have surgery, but I want other options to consider first. What are some other possible treatment options?
A: When an abscess develops, this indicates that the Crohn’s inflammation has burrowed all the way through the intestine wall, and has actually made a hole in the intestine wall. The little hole in the intestine allows the contents of the intestine to leak out into your abdomen, and you body defends itself by walling off the area and creating an abscess. Surgery is required to fix that hole in the intestine wall, because medicines are not able to do that.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2016
Q: How can I help my 14 year old daughter manage side effects of Entyvio? She had her first infusion last week and today is having back pain so much that her bra hurts. She is in tears once she came home from a long day of school and rehearsal. She is also having the feeling of nausea. Would ibuprofen help?
A: I would recommend contacting your pediatric gastroenterologist as soon as possible to address this complaint which may be a non-specific side effect, but possible underlying causes (arthritis, bone infection) should be ruled out.
ANSWERED BY:
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: My 12 year old son was just diagnosed with cd. I am having a hard time having him change his diet and understanding that he has to adjust his lifestyle. He is 12 years old, weighs 60 lbs has lost 25 lbs this year. Should I get him a dietician to help come up with a diet to help him gain weight? Is there a preferred diet for children?
A: Yes, your pediatric gastroenterologist should be able to direct or refer you for a dietician consult. There are several strict diets, such as gluten free diet, specific carbohydrate diet, or exclusive enteral nutrition (exclusive formula diet) that have been shown to provide therapeutic benefits in children with Crohn’s disease. It is very important to work with your gastroenterologist in respect to this question.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: My 12 year old son was diagnosed with moderate to severe Crohn’s this past summer. He has been taken off prednisone, but remains on methotrexate and remicade infusions. He has his fourth infusion in a few days. He doesn't have "bathroom issues" but has severe pain in his upper abdomen and body pain. Is it "normal” not have problems bowel movements but have ongoing pain?
A: No, at this stage most patients would be symptom free. Actually, rebound constipation may be a common cause for the complaints, but it is very important to notify your pediatric gastroenterologist as soon as possible for her/him to address the complaints.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: I had a right hemicolectomy in June 2015 with removal of the ileocecal valve. I have had constant severe diarrhea since that time. I have tried many medications with no success. Any suggestions?
A: The ileocecal valve is an anatomic landmark that connects the ileum (small intestine) and colon (large intestine). Unfortunately, many questions concerning its function and structure remain unanswered. We do know that the intestinal contents pass from the ileum and into colon through this valve, and the passage is controlled by chemicals in the blood stream and nerves supplying the intestine. Furthermore, the valve may help maintain a difference in the bacteria found in the colon compared to the ileum. Most patients who have their ileocecal valve removed do not experience any long-term change in their bowel habits. The frequent or loose stools (diarrhea) that do occur in others can result from multiple causes that must be sorted to determine the best treatment. If a large amount of the ileum has been removed with the ileocecal valve, the body is unable to manage fat in the diet, and the resultant diarrhea (steatorrhea) tends to be associated with oily stools that may float and are particularly foul-smelling. In this instance, a medication (cholestyramine) taken at mealtime can improve the diarrhea. In other patients, the diarrhea occurs because of colon bacteria now residing in the ileum (small intestine bacterial overgrowth). This overgrowth can also cause bloating and pain, and is usually managed with antibiotics taken for 1-2 weeks, but repeated courses may be required. Lastly, the diarrhea can result from the intestinal contents passing too quickly along the length of the bowel. Anti-diarrheal agents (diphenoxylate plus atropine, loperamide) can slow this passage to decrease the frequency of the stool. Moreover, over-the-counter fiber products may help increase the stool’s consistency.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2016
Q: I had surgery in 2000. I had my colon removed and had a "j" pouch to avoid an ileostomy. I have developed a skin irritation that will not heal because of the frequency of bathroom use. It is extremely painful and I am requiring prescription pain killers. Is there any information on ways to help the skin heal?
A: Irritation of the skin around the anal area (perineum) caused by frequent stools (diarrhea) or poor control (incontinence) is caused by many factors working together. Frequent cleansing causes damage from abrasions and alters the skin’s protective acid content (pH). Excessive moisture further alters the skin’s pH, which increases its porousness (permeability). In addition to the local inflammation caused by cleansing and moisture, infection may develop as germs contained in the stool can penetrate the traumatized and porous skin. Management of the perineal skin damage requires local measures as well as identification and treatment of the underlying cause. Perineal skin cleansing should be performed after each stool or incontinent episode. Specific cleansers are available in many forms (emulsion, foam, liquid, towelette). Bar soaps, skin cleansing agents, and antibacterial hand-washing products can worsen the problem. The affected skin needs to be moisturized to reinstate the depleted factors. Humectants (glycerin, lanolin, methyl glucose esters, mineral oil) contained in perineal cleansers replace the skin’s natural oils. No-rinse perineal cleansers with humectants minimize drying because they remain on the skin rather than being rinsed away. Moisture barriers (protectants) contain active ingredients (dimethicone, lanolin, petroleum jelly, zinc oxide) to shield the skin from exposure to irritants and moisture. A moisture barrier may be incorporated into skin cleansers or separately applied as a cream, ointment, or paste. Ointments and pastes are longer lasting and more occlusive. Liquid barrier films or skin sealants combine a solvent that evaporates and a polymer that dries to form a barrier when applied. Some solvents may irritate the damaged skin, and any product should be accordingly used only if not associated with stinging during application. A liquid film barrier should not be combined with a moisture barrier because these agents are typically incompatib
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
November 2016
Q: I have severe stomach bloating. I look like I’m pregnant. Can IBD cause severe bloating? What can be done to reduce the bloating?
A: Bloating may a symptom of active IBD. Bloating can also occur due to other conditions that may be present in patients with IBD. These conditions include: small bowel bacterial overgrowth, celiac disease, irritable bowel syndrome, lactose intolerance, among others. Your symptoms should be discussed further with your doctor, to better understand the cause. A diet low in fermentable oligo-, di-, and monosaccharides and polyols, called a “low FODMAP” diet, may be helpful. Your doctor can provide you will further details about this diet, or other treatments for your symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2016
Q: My 14 year old daughter has Crohn's and takes methotrexate injections. She struggles to eat the most basic foods without feeling unwell. Is there any meal replacement shakes that is suitable for have age?
A: There are definitely several options of nutritional shakes available for her age. Any nutritional supplementation or especially "meal replacement" should be done with the supervision and consultation of a registered dietitian. I would recommend asking your daughter's gastroenterologist for a referral to meet with one to discuss further.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have tried all the meds, biologics included and after many years of little relief, I searched for natural alternatives. My UC maintained remission for 4 yrs and I have been able to control my pain and inflammation with Matcha green tea. I drink 2 cups a day but this isn't your typical over the counter tea. I buy it in powder form. Is this something you have heard of before?
A: I know patient who have received relief with homeopathic options like green tea or peppermint tea or oil. These options have not been well studies and it is worth checking with your gastroenterologist to make sure they are safe and will not cause any inadvertent harm.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: With the combo of medication + having a chronic illness, what is a good way to cope with anxiety and depressed feeling?
A: The best ways to cope with anxiety and depressed feelings are to work with a counselor or therapist to figure out what aspects of what is causing those feeling are controllable and which are not. For things in your control to change, finding distracting activities (things you have a passion for), exercise, and good social support is best. For things you cannot control, like having IBD, finding the best coping techniques to not get as stressed out about it. These techniques I describe are called cognitive behavioral therapy. These techniques are available through counselors or through self-help educational tools like golantern.com.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Please discuss medical cannabis vs opiates for pain management. I have RA as well and the NSAIDs are a nightmare for my Crohn’s.
A: While some patients report relief of their abdominal pain and nausea with medical cannabis, there is growing evidence that there may be negative effects on the brain - especially with long term use. These can be memory and attention problems, slowed reflexes (when driving) and for some patient development of anxiety, depression, and feeling paranoid. At the moment there is not enough evidence for the medical community to say how safe medical cannabis is but it is being studied.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have Crohn's and have joint pain that is constant, despite my guts being in remission from Humira. I am interested in finding non-drug ways to cope with the pain. I've had some success with acupuncture. What alternative approaches have been shown to help with IBD related joint pain?
A: There is some evidence that acupuncture can help patients with irritable bowel syndrome. For IBD, there are small studies showing benefit of yoga and mindfulness meditation.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: How do you deal with chronic mouth ulcers
A: There are numbing agents that you can swish in your mouth that your gastroenterologist can tell you about. Hypnosis can also be very useful for helping ulcers.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Can you talk about the impact of disrupted sleep on Crohn's disease and what is being done to help patients who have these issues (who aren't on steroids)?
A: Disrupted sleep can make IBD worse- worse inflammation, more pain, and also predisposes people to more anxiety and depressed mood. Disrupted sleep can be having trouble falling asleep, multiple awakenings or not getting enough sleep. Many medical sleep societies recommend all adults need 7-9 hours per sleep a night. Most important things to do to help sleep disruption is doing enough physical activity during the day to be tired by night, good sleep hygeine (so no bright lights including computers or cell-phone screens in bed) and going to bed and getting up at the same time each night. Sleep can now be monitored on gadgets like fitbits or also apps like sleepcycle.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: For pain management does an IBD patient need to go to a pain management specialist or solely to the gastroenterologist or both?
A: Different GI clinics or practices have different ways they handle pain management. Some gastroenterologists have algorithms that they try first. Many have psychosocial resources available who specialize in pain. Pain experts can be counselors or pain anesthesiologists who can sometimes have success with nerve blocks, TENS units, or vagal nerve stimulators- though these latter techniques have not been well studied.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Part of the discomfort I feel is caused by a feeling of moving around in the intestine - it gurgles and can be quite loud. Doctors seem to dismiss this symptom but it is actually one of the worst parts of the illness (at least for me). It makes it hard to concentrate on much of anything when your insides are rolling. Is there anything you might suggest for easing the discomfort?
A: To ease the discomfort you describe, you might consider distraction techniques. These are either activities you can do to forget about the gurgling or mind techniques such as meditation or hypnosis. To learn about certified medical hypnotists in your area, you can go to the website of the American Society of Clinical Hypnosis. There are also some good apps available to help teach meditation like headspace.com. Finally, there are educational stress management websites such as www.gameplan.com that can give you ideas too.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: What are the pain management options? NSAIDs are out for obvious reasons. Tylenol only takes edge off. Narcotics have their own list of problems including but not limited to addiction. I've asked for an antispasmodic to hopefully reduce spasms/pain. But this is a last ditch effort on my behalf to control my chronic pain. I'd love to hear any other suggestions.
A: The more chronic the pain, the more it involves the brain. What I mean is that the brain re-organizes if constantly bombarded by pain signals and neighboring brain regions that process emotions (anxiety, depression) and thoughts can also be affected. Most research supports learning coping skills to reduce these negative emotions or negative or pessimistic thinking as the best way to reduce pain perception. You are correct narcotics have many side effects and have been associated with greater risk of infections and death in patients with Crohn’s disease. There are non-opioid pain medications that have evidence in helping pain – working both on the nerves and in the brain. Finding a pain doctor or psychiatrist who specialized in chronic pain can help you find specific options.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I would like to know more about extraintestinal / non-gut pain relief. Joint pain seems to be a big problem for me, even when the Crohn's is mostly in remission. Tylenol has been the only thing I can take without unpleasant side effects. What natural pain relief options are out there? Also, where is the research on this today? Has there been any progress?
A: First for any type of pain, you want to check with your gastroenterologist to make sure that it is not due to inflammation and other medical causes. The most natural pain relief options are those that do not use medications- brain techniques such as relaxation, meditation and increasing enjoyable activity. For natural pain options, omega 3 fatty acids have been studied but best to check with your doctor.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I understand the myriad of reasons that doctors are opposed to narcotics to treat pain related to IBD. What are we to do when, more often than not, they're the only thing that bring relief?
A: You are correct- there is a growing list of serious problems caused by opioids including tolerance (needing higher and higher dose to treat the pain), brain effects, increased risk of infection and increased risk of death. In vulnerable patients, they can lead to addiction. With chronic use, they can lead to gastrointestinal problems such as constipation and obstruction. There are patients who do well with low dose opioids and careful monitoring but given the risks, it is important to be followed by a pain specialist and to consider other non-opioid options when possible.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: My daughter is 16 and has CD. Her doctor has recommended Remicade. He also indicated that they can now “push the dosing”. He said the infusion can done in a shorter period of time than two hours. I can’t find any information on Remicade infusion being completed in less than two hours. Do you have information on faster infusion times?
A: There are scientific studies showing safety and tolerability of rapid infusions of Remicade. I am not aware of any patient-focused literature discussing this topic. I would recommend bringing your questions to your daughter's physician to discuss further with him or her. This is not yet typically standard of care at most hospitals, but is being offered at more and more infusion clinics.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: I recently had a small bowel series, it showed that I had focal narrowing in small intestine with possible structure findings concerning for underlying IBD. They did an MRI a week later, nothing showed up on MRI. I'm so frustrated. I have been struggling with trying to find out what's going on with my stomach for years now. After small bowel series I thought I finally had an answer. Now I'm back to square one. Is it still possible I had inflammation and then it wasn't present at time MRI?
A: I can understand your frustration. Typically, an MRI is a better test for a stricture than a small bowel series. It may be that the small bowel series findings were falsely positive. If there is ongoing concern for IBD, there are potential lab tests that may be helpful as well.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I was wondering if an appendectomy can improve UC. I am a 32-year-old woman who has had UC since 2003 (when I was 19). I had very active disease from 2003-2006, and then, with the help of 6mp, had occasionally active disease from 2007-2013 (maybe 2 mild flares per year). In early 2013, I got appendicitis and had an appendectomy. Since the appendectomy, my UC has been much better -- I've had only 1 mild flare in the 3.5 years since. Is it coincidence? I'm still on 6mp and Colazal.
A: It may not be a coincidence that you have felt better but it’s difficult to say for certain. To date, the studies on appendectomy and the course of ulcerative colitis have been conflicting. While some studies have shown an improvement in UC, others have not. Currently, there is a large study out of the UK looking at this very issue. We should have some preliminary results within the next 1-2 years so keep a lookout for this.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2016
Q: I have UC diagnosed in 2008. It got very bad, 30 plus episodes of diarrhea a day and heavy bleeding. Now I'm struggling with constipation and a hard distended stomach as well as 10 plus episodes per day of passing just blood and tissue. I take stool softeners to keep things normal and reduce pain and bleeding. I am concerned about a blockage or maybe Crohn's in addition to UC, but my imaging doesn't seem to support either of those things. Is what I am experiencing normal?
A: Thanks for your question. It’s difficult to say exactly what may be going on without having more information. If you’ve had a colonoscopy and your UC is controlled (i.e., there is no active inflammation), there may be other causes for your altered bowel movements. The constipation may be caused by medications, irritable bowel syndrome, small bowel bacterial overgrowth, etc.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: Would any of the experts recommend a Paleo diet, probiotics (if so what brand or specifics to look for), or the use concentrated cherry juice for ulcerative colitis flares?
A: This is a very common question. Currently, there is no data to suggest that the Paleo diet or concentrated juices are effective for ulcerative colitis flares. As far as probiotics, not all of them are considered the same. In mildly active ulcerative colitis, 2 specific probiotics may be useful. One probiotic, E. coli Nissle (aka Mutaflor, Ardeypharm) may be effective in putting you in and keeping you in remission for up to one year. The other probiotic called VSL#3, a combination of 8 probiotics, is effective in putting you in remission and possibly keeping you in remission for up to 6 months.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have been diagnosed with microscopic colitis. My symptoms are weight loss from 128 to 108 pounds; gas and bloating; mild diarrhea. Could there be particular nutrients that I am not absorbing that explain the weight loss? Are there particular foods I should eat more of in order to gain weight? I have been following the Specific Carbohydrate Diet for two months and believe it helps reduce gas and bloating but I have not been able to regain lost weight.
A: That’s interesting. Weight loss is uncommon in microscopic colitis. There may be several reasons for the weight loss. If the weight loss has occurred since you started the Specific Carb Diet (SCD), it may be due to the food restrictions from the SCD itself. In addition, it may be a good idea to get tested for celiac disease, which is more common in microscopic colitis, and pancreas problems. Both these disease processes are more likely to cause weight loss.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: My GI doctor has recently suggested a new treatment for my Crohn's disease. He has suggested the medication Entyvio. I haven't heard much about the medication, and before committing I'm trying to gather information about medication.
A: It’s always a good idea to gather information on a new medication that is being recommended. Entyvio is a biologic medication that binds a gut-specific protein that is important in causing inflammation. It is given as an intravenously (IV) infusion, a little more initially to induce remission, and then usually every 8 weeks for maintenance. Its safety profile so far seems to be better than the anti-TNF agents like Remicade and Humira. However, it looks like it can take longer to start working than those medications. I would speak to your provider for further details. You can also obtain more information on Entyvio from http://www.ccfa.org/resources/biologic-therapies.html.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I’ve been taking Pentasa since being diagnosed with CD in 2003. I initially started out at 4 pills 4 times a day at 500mg a pill. My symptoms have been well controlled since. The past 2 years I w/Dr have changed my dosage to 4 pills once a day still 500mg. In the past 2 years my big toe nails have both become discolored and infected. Just recently I have noted getting the tingles/numbness in my arms and legs at times. Could I be having medication withdraw? Or is it just a coincidence?
A: Peripheral neuropathy has been rarely associated with mesalamine products like Pentasa. I don’t know if the discoloration and infection of your toe is related to the Pentasa though. I would check with your provider and ensure that other causes of tingling/numbness in your extremities, especially if these are a persistent symptom, are ruled out.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I've been taking Pentasa for 23 years. First, 4 pills @ 250 mg twice a day and the last couple of months 2 pills @ 250 3 times a day. In both situations I feel the medicine after 23 years has been the cause of my sinus/nasal issues and makes it hard to breathe. I also have a general unwell feeling. Is it possible to build an intolerance to this medicine after 23 years? Prior to Pentasa I took Azulfadine for many years and could no longer take it. What are some other treatment options?
A: Sinus/nasal problems would be an unusual effect of a medication like Pentasa. Things like sinusitis (inflammation of sinus tracts) has been reported with medications like Pentasa in large studies but it is uncommon. If you have generally been feeling unwell, from an IBD standpoint, it may be important to ensure that your disease is controlled. Often your symptoms don’t correlate with active intestinal inflammation so it is important that labs, imaging, and/or colonoscopy are performed to obtain an objective assessment of the disease. If you do have active intestinal inflammation, there are several treatment options based on the degree of disease severity that you can discuss with your provider.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: How often should a 70 year-old male with Crohns disease have a colonoscopy?
A: This is a very good question. Unfortunately, the answer is more complicated. It’s important to realize that the goals of Crohn’s disease treatment may be different based on a patient’s overall health. Advanced age can occasionally be associated with declining health but not always. Generally, in older age, we treat Crohn’s disease to control symptoms. In younger age (i.e., age <40) , we treat Crohn’s disease to heal the intestinal inflammation and control symptoms. In general, patients who are diagnosed with Crohn’s at age ≥60 have the same risk of developing colorectal cancer as patients diagnosed with Crohn’s at an earlier age. Colonoscopy in Crohn’s disease may be performed to evaluate intestinal disease activity or evaluate for colorectal cancer from long-standing Crohn’s disease and patient age. There is no consensus on this approach but in my older patients regardless of whether they have IBD or not, I do colon cancer screening colonoscopies if the patient can safely undergo surgery in case we discover malignancy. In older patients in whom I am considering a colonoscopy to evaluate for active inflammation, I take into account the patient’s other illnesses before proceeding. I would speak to your provider about the risks and benefits of performing a colonoscopy.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: I often hear of ulcerative colitis, but what are microscopic colitis and lymphocytic colitis? Are these types of IBD? Can a patient have both UC and another type of colitis?
A: Lymphocytic and collagenous colitis are the two types of microscopic colitis. They fall within the spectrum of inflammatory bowel disease but behave very differently than Crohn's or ulcerative colitis. A patient generally has either Crohn's or ulcerative colitis or they can have microscopic colitis but not both.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What is gastroparesis? Can you have IBD and that at the same time? Can it be confused with IBS?
A: When there is a delay in emptying of the stomach contents into the small bowel, this is termed gastroparesis. Patient may have a sensation of fullness, nausea, and vomiting. Gastroparesis and IBD can be going on concurrently. It is possible that gastroparesis and IBS may be mistaken for one another.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2016
Q: My Iron levels are low and my GI recommended an iron supplement. Can an iron supplement cause flares or worsen a current flare?
A: This is a controversial topic. There are studies that show that iron can worsen inflammation and those that do not. I tend to avoid oral iron in my patients with more severe disease or who are having flares but I do use it in those patients who need iron and have more mild disease.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Can microscopic colitis change to ulcerative colitis? Or just misdiagnosed? And any relationship between UC and rheumatoid arthritis?
A: And any relationship between UC and rheumatoid arthritis? Microscopic colitis is made up of collagenous and lymphocytic colitis. I have seen microscopic colitis patients who then go on to develop Crohn's or UC but this is uncommon. Microscopic colitis and IBD are diagnosed and behave differently though and the diagnosis should be more clear after an evaluation. UC and rheumatoid arthritis can be found together as they are both autoimmune disorders. You can learn more about microscopic colitis here: http://www.ccfa.org/resources/microscopic-colitis.html.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Does IBS cause IBD? Can patients with IBD have IBS concurrently?
A: IBS and IBD are completely different processes with different causes and complications. A patient can definitely have both processes and sometimes it can be difficult to differentiate between the two when symptoms arise.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Do you use the fecal calprotectin test to monitor your patients GI inflammation? If so, at what intervals?
A: 90 days? I do use fecal calprotectin as a marker for inflammation. There's data that shows it can help predict a flare. I know GIs who use it every three months. In my practice, my use is based on the individual patient.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: How often should a patient have scopes after Pancolitis?
A: It depends on how long a patient has had pan colitis. If it's been 8-10 years, then generally the recommendation is 1-3 years depending on other risk factors (i.e., family history of colon cancer).
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Are there any issues with birth control pills exacerbating UC or Crohn's symptoms in women?
A: Estrogen-containing birth control pills have been associated with development of Crohn's in the past and recently there was a study suggesting that it is associated with a worse course of Crohn's. I would discuss this with your GI.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What type of diet do you recommend for people suffering Crohn’s and colitis? Is there anything particularly harmful that worsens symptoms or the disease?
A: This is a very popular question. There is increasing interest in this topic and more and more information is coming out. There is some preliminary studies showing that dairy products, red meat, and coconut oil may worse IBD. When a patient is undergoing a flare, I do suggest going on a low fiber diet. Because of the individualized nature of IBD, what works for one patient may not work for another when it comes to diet. Check out CCFA's diet and nutrition brochure to learn about the role of diet in IBD. http://www.ccfa.org/assets/pdfs/diet-nutrition-2013- 1.pdf.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2016
Q: I was diagnosed with UC about 4 years ago. I'm currently on Remicade, 6MP, and Asacol. I'm an avid cyclist and over the past year have started to experience bouts of muscle fatigue and severe muscle cramping. This NEVER happened prior to my life w/UC. It's as if my muscles rebel against me without warning, even when I'm in remission and feeling quite well; it's like I unexpectedly get pushed off a cliff. Could this fatigue be due to the UC, the meds, or a combination?
A: It is difficult to know. If you are having diarrhea, you could be having electrolyte abnormalities and could be more prone to dehydration, which can affect cramping. The medications that you are taking seldom cause muscle aches, so I don't think that the meds are causing the issue, unless you recall getting cramps from one of the above meds. Finally, if you had a prolonged flare, you could have some muscle deconditioning and perhaps need to regain your strength and rebuild your muscle.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have UC which has not bothered me much. I take Sulfasalazine, Folic acid and a Probiotic. In the last 2 weeks, I’ve been having a flare up. I have very loud gurgling in my stomach area, with mucus/bloody discharge. I have not changed my diet at all. Is the gurgling a UC symptom and what causes it? How do I get it to stop?
A: This may not be a UC flare at all. I usually tell my patients that symptoms of a flare are most likely similar to how you felt when you were diagnosed. A lot of my patients have irritable bowel (IBS), which often leads to gurgling and mucous. Stress can make this worse. At this point, if you feel that this is a flare, I'd consider repeating some lab work and perhaps doing a stool study to evaluate for infection. I'd communicate this with your GI doctor/nurse.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I’m a 27 year old female diagnosed with Crohn's May, 2015. I also have Multiple Sclerosis diagnosed in 2006. I am currently receiving IV rituxan infusions for the MS. My neurologist urges against additional immunosuppressants (prednisone, remicade, etc) and states that rituxan is also used for CD. I have not found literature on rituxan use in CD. I’m not on any treatment for the CD yet except dietary changes. Do you have information on rituxan and suggestions on treatment options?
A: Rituxan has been studied in Crohn's disease and has not been effective, so we do not give this for Crohn's patients alone. Regardless, if you were doing well on rituxan from a Crohn's standpoint, I too would avoid other treatments. However, if you are not doing well, I disagree that we can't give you anything. If you have MS, you should not get anti-TNF agents (infliximab, adalimumab, certolizumab). However, there are other choices out there, depending on the severity of your Crohn's. Certainly, if you are doing poorly, I would not avoid treating your Crohn's because you have MS. The most important aspect of your Crohn's care is that your neurologist and GI doc are communicating what plans that they have for you.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2016
Q: I have UC and have been on Remicade for 1 ½ years. A recent colonoscopy shows that all my ulcers are healed. All my blood work is normal. Should Remicade be stopped and my medication options go back down the treatment pyramid to an immunosuppressant or 5ASA as a maintenance drug?
A: This has been studied by several centers, mostly in Crohn's disease. You mention a lot of good things: you have been doing well symptomatically, you have "mucosal healing" on a colonoscopy, lab work looks good. Because of this, I personally would have a conversation with you about de-escalating therapy, likely to another immunosuppressant. However, the rates of flare are about 50% in the first year, so other doctors may have the "don't fix what is not broken" philosophy and tell you to continue these medications. The good news is that if you go down on therapy and have a flare, most patients can regain their remisison if they restart remicade and nowadays, we do have more options for therapy. So I personally don't have a problem if people want to try and de-escalate, provided that they are in a deep remission (symptoms and colonoscopy looking good).
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: My 25 year old son with CD has been on Asacol HD for the past 7 years. He recently had a major flare up and has been sick for the past month. His doctor said that his condition has significantly worsened and has recommended humira. Is that a medicine he can be on long term? Is there a better alternative? With limited prescription coverage how can he afford this medication?
A: Asacol is often not enough to manage sick patients with Crohn's, so yes, I agree that he should be escalated to something more effective. There are alternatives, but I agree that he most likely needs a biologic like Humira. The other alternatives (immunomodulators like azathioprine or methotrexate) are another choice, but I believe that they have comparable risks. I usually tell patients that it's a "forever for now" medication. He has a long term condition that needs long term maintenance, and it's much safer to be on a drug for Crohn's than to be sick with Crohn's. I try to emphasize this with my patients who are reasonably concerned about the long term effects of drugs. We have made huge improvements in the care of patients with IBD and that's due to both our understanding of Crohn's, but also the medications currently available. The drug companies have patient assistance programs, so if your docs are wanting to start Humira, for example, the companies will work with you to get the medications.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have CD and have been on TPN (for five years), pantoprazole b.i.d. and Entocort EC and eat only a small amount of highly blended one ingredient food. I will have cataract surgery soon and Nsaid eye drops are recommended after the surgery. Is there stomach or bowel bleeding/irritation risk with this treatment?
A: NSAIDs can potentially cause ulceration in the bowel, but this requires more frequent oral therapy, so I suspect that drops are low risk. It really depends on how bad your Crohn's disease is currently. If you are doing well, I think it's ok to start this and follow your symptoms.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have had Crohn's for nine years now and have been on biologics for 6 years. About a year after I started Remicade I noticed I started getting scalp psoriasis. Since then it has gotten worse. I’ve tried about every medication on the market. Is it possible that Crohn's can cause other inflammatory illnesses like psoriasis or can biologics cause it?
A: Yes, you can sometimes develop psoriasis and other skin problems from the biologics like remicade. However, remicade is also used to treat psoriasis. I'd recommend seeing your dermatologist. The reality is that Crohn's disease usually has other autoimmune skin disorders that go along with it, like psoriasis, so this may not be because of your drugs but rather related to having Cron's disease.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I was diagnosed with Crohn's/Colitis in late 2015. After years of suffering from IBS/Diverticulosis, I tried Lialda; Cort Enema and Uceris with no success. Currently I’m on 6MP 100 mg. for 8 weeks and 30 mg of prednisone for 3 mos. Every time I try to taper prednisone down to 25 mg, symptoms return. I can't handle prednisone side effects much longer. How long should I continue 6MP before switching to something like Humira and why can't I seem to get off the prednisone?
A: Usually, people who can't come off prednisone are called "steroid-dependent" and that's usually a sign that you need to be on more effective therapies. 6MP is a reasonable thing to try, and I usually give 8-12 weeks to see if this will work, in that you should feel better and not need steroids. If this is not the case, then going to a biologic medication like Humira is reasonable. Your GI doctor should be making sure that all of your bad symptoms are related to having Crohn's, as opposed to IBS or C diff, etc.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
June 2016
Q: My son (14) was recently diagnosed with ulcerative colitis. His only symptoms were gas, and fatigue and shortness of breath with exhaustion from anemia. Never any pain and only infrequent diarrhea. He was on prednisone for 7 weeks and is now on 6 MP and Apriso. I am worried about 6 MP from all I've read, especially in adolescent males. Can he be treated with Apriso alone since he's really never had typical symptoms of UC?
A: Not everyone with ulcerative colitis has diarrhea or blood in their stool. Some have pain or urgency with bowel movements. Fatigue is also a very common symptom with IBD. For many children poor weight gain or growth may be their only symptom. While it is good that your son doesn’t have many symptoms, that doesn’t necessarily mean that his disease is fully under control. It is important to ask your doctor how well his colitis is controlled because inflammation can cause problems, even if he doesn’t feel it. Chronic, ongoing inflammation of the colon can increase the risk of a flare of colitis, interfere with growth, increase his risk for certain infections, and also increases the risk of colon cancer too. For all these reasons, it’s best to have his colitis under control. Fatigue is an important symptom that can happen for many reasons. For some, it’s the main symptom of their colitis. Anemia can also cause fatigue, and often is a sign of active disease. Also thyroid conditions can develop in people with IBD. Some people with IBD also have sleep disorders, which make them fatigued. And, of course, teenagers often stay up late at night and are fatigued simply from lack of sleep. It is important to discuss his fatigue with your doctor to help sort out what the cause of the fatigue is. Now regarding medications. Most of the time, 6-MP is used either because someone has moderate to severe colitis or because mesalamine medicines (like Apriso) didn’t work. In these situations, the mesalamine family of medicines are generally not effective, and occasionally can make colitis worse. All medicines have risks. The risk of 6-MP is low, but it does have risks. There may be other alternatives to 6-MP. But each has its own risk. And it’s also important to remember that there is risk to colitis that is not well controlled (even without dramatic symptoms). So I encourage you to talk with your doctor about risks of his medicines and what the alternatives may be.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: My dad was diagnosed with ulcerative colitis in 1982 and was recently diagnosed with prostate cancer. Treatment for his cancer involves radiation therapy. The doc said the radiation treatment might impact his uc and cause more inflammation or interfere with his uc treatment. What research or information do you have on how radiation treatment might affect uc?
A: Currently we don't have much information about the impact of radiation therapy to ulcerative colitis. We do know that radiation can cause injury and inflammation to adjacent rectum and you can get radiation induced proctitis. Your cancer Doctor may want to adjust the dose and intensity of brachytherapy accordingly. Active cancer may prohibit the use of certain immunosupressive drugs and close monitoring and ensuring colitis is under control is extremely important.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I was diagnosed with UC in 2007. I am taking Rowasa sachet and have been in remission for last 2 years. Since I am in remission do I still have to go for a regular c olonoscopy? If I am in remission is there still there a danger of colon cancer? remission is there still there a danger of colon cancer?
A: There are 2 main reasons to perform colonoscopy in ulcerative colitis: (1) to assess disease activity and monitor response to therapy and (2) to screen for precancerous and cancerous lesions. Long standing inflammation of the colon is a risk factor for colon cancer. Other risk factors for colon cancers include family history and long duration of the disease. Depending on the disease location, many gastroenterologists will start screeningfor colon cancer after 8-10 years of diagnosis of ulcerative colitis. Screening for colon cancer via colonoscopy is usually planned at a regular interval of 1-2 years. Clinical remission is different from histological remission. If you are not having symptoms, this is called clinical remission. Histological remission would be when there is no active inflammation on the biopsy. Once you achieve histological remission, you may discuss with your physician to extend the interval of colonoscopy for colon cancer screening but you would still need colonoscopy for colon cancer screening. We hope that in future we develop other non-invasive methods to screen for colon cancer.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I have Crohn’s Disease and have used steroids over the years. What is the best way to manage severe knee pain from steroid use?
A: The best way to manage any joint pain in patients with Crohn’s disease or ulcerative colitis is to first explore the cause of the pain. Joint pains can happen due to active disease (inflammation) or other general causes such as osteoarthritis. While bone loss (osteoporosis) is common with steroids, isolated knee pains from steroids are uncommon. You may want to disc uss with your physician if it’s really the steroids or if there are other causes for knee pains. Sometimes you can get muscle weakness from steroids that can cause difficulty walking and sitting up from chair. It should get better after stopping the steroids. You should discuss with your physician if further tests are required to evaluate the knee pain.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I am on Lialda and my GI said I should let surgeons, dentist and other doctors know that I am on this med. Why is it important for other health care providers to know about this medication?
A: It is important that your treating physicians are aware of your medical condition and the drugs you are being prescribed. You should ask your physician if there is a particular concern with this medication that he or she is worried about. In general, mesalamine therapies such as Lialda are safe drugs and don’t require any particular precautions except routine blood tests at regular intervals and monitoring for side effects.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: I am 32 years old and diagnosed with indeterminate colitis in 2006. I’ve been on Remicade for 3-4 years. I am in a flare now but feel ok. The doctor wants to add 6mp. I'm scared of side effects and would like to get pregnant soon. He says 6mp is OK in pregnancy. I would like more info on this medication and if I feel ok should I be taking something that strong?
A: The goal of therapy in inflammatory bowel disease is to not only control symptoms but also to ensure that inflammation is also improving. If you have active inflammation based on symptoms, laboratory tests or recent endoscopy, it is very important that before conception, diseasesymptoms and inflammation gets under control. Active inflammation at the time of conception or during pregnancy can bring bad outcomes to both mother and baby. The benefit of medical therapy during pregnancy to control inflammation outweighs the risk of side effects in most cases. You should have discussion with your physician regarding the choice of therapy, rationale for the therapy and side effects and then decide if this is right for you.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I am a 47-year-old male with CD. I have a lot of commitments at work, home, and in the community. I am suffering from bouts of extreme exhaustion, weakness in my legs and a stiff, sometimes numbing sensation in my ankles. I had a resection I'm 2004 and my doctor considers me to be in remission. But I have daily problems with diarrhea and discomfort. I take Entocort and 6mp, along with two tablets of Lomodil to control diarrhea. How can the exhaustion, diarrhea and discomfort be manage
A: There are many reasons for fatigue and exhaustion in Crohn’s disease. Anemia, such as iron deficiency anemia, nutrient deficiencies such as vitamin B12 deficiency and poor sleep c an contribute to the symptoms of fatigue and tiredness. Sometimes, it could be the drugs contributing to fatigue as well. Ensure you discuss these issues with your physician. There are also multiple causes of diarrhea after surgery such as recurrence of Crohn’s disease, short gut syndrome and bile acid diarrhea as some of the most common causes. You may want to discuss with your physician about these causes and other reasons for diarrhea.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I'm a female in my 20s and diagnosed with severe UC April 2015. I've had several courses of Lialda, prednisone, Asacol, delzicol, and so far nothing has really worked that well for me. My doctor wants me to either start Humira or possibly Remicade within the next month. My concern is that I also was diagnosed with peptic ulcers in 2008. Will either Humira or Remicade affect my ulcers in any way?
A: Anti TNF drugs such as you mentioned are not known to cause stomach ulcers.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I was diagnosed with UC 12 yrs. ago. I take 3 1.2 mg Lialda tabs/day and that works pretty well. I haven't had flare up in a while but recent colonoscopy showed inflammation in multiple areas: transverse, ascending, etc. The dr. has prescribed 50 mg 6MP per day but I don't like the side effects (funny feeling in mouth, drinking lots of water=have to pee constantly, achy, tired). I Do NOT want to take this but doctor warns of cancer risk. Any advice or alternative treatment recommendations
A: The goals of ulcerative colitis treatment include symptom relief, healing of mucosa and minimize the risk of hospitalization and surgery. Persistent inflammation not only increases the risk of colon cancer but also increases the risk of future flare. Discuss with your physician about alternative choices if you are not comfortable with the choice of drug therapy. Different strategies can be applied when one sees active inflammation on the endoscopy in ulcerative colitis, including optimizing the current therapy (such as increasing the dose), adding immunosuppressive drugs such as 6 MP or even consideration to add biologic therapy. It will be a discussion between you and your physician regarding the risk with therapy escalation vs. risk of untreated inflamed colon.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I have UC and I read that fecal microbiotic transplantation (FMT) might be a cure for UC. How can I get a FMT for UC treatment? Is the treatment only for active UC?
A: One study conducted by Dr. Moayyedi and colleagues assessed patients with active UC and administered them 50 mL enemas once a week for 6 weeks. They compared these patients to those receiving water enemas. 9 of 38 patients receiving FMT achieved remission with improved clinical scores and endoscopic scores (camera assessing the lining of your intestine for healing). Only 2 of 37 patients receiving placebo improved. Notably, 7 of the 9 patients who were in remission received stool from the same donor. It may be that some donors have possess specific types of therapeutic microbes but we have yet to determine what these specific collections of strains may be.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: What exactly is fecal microbial transplantation?
A: Fecal microbiota transplantation (FMT) is a procedure where stool is taken from a healthy donor and placed inside the intestine of a patient who may be suffering from a number of symptoms. It is hoped that the patient’s intestinal microbiome will be re-colonized similarly to the donor’s intestinal microbiome. This re-colonization may help some patients recover from their symptoms. Presently, FMT is considered investigational but has demonstrated particularly good efficacy in managing patients suffering from recurrent or refractory Clostridium difficile infection (CDI).
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: I’ve had proctitis for many years and my condition recently progressed into ulcerative colitis where I go to the bathroom over 20 times per day. I have tried Budesonide, other steroids, canasa, lialda and apriso yet my condition has worsened. My doctor has recommended Humira. What is the response rate for uc patients on this medication? Is there any hope that this will help put me back in remission or should I ask my doctor about another course of treatment?
A: Humira (adalimumab) is FDA-approved for the treatment of ulcerative colitis. It does induce remission and also maintains remission in those who are responding. Just as with the other medications that you have tried, Humira (adalimumab) does not work for everyone but would be an appropriate treatment for your condition. In the randomized controlled trials that led to FDA approval of Humira (adalimumab), the remission rate was around 20%. It is difficult to translate that number to your likelihood of responding because patients in trials often have lesser response rate than we see in real life use. In that study, it appeared that extensive colitis (having more colon involved) and very high CRP (an inflammatory marker) were predictors of a non-response.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: My daughter was diagnosed with cd Sept. 2015 and has been on Remicade but a new symptom we notice sometimes she small leaks from her rectum. Is this a normal side effect?
A: I would recommend that your daughter’s gastroenterologist examine her perianal area at their next visit. Crohn’s disease can cause fistulas (connections from the rectum to the skin), and a physical exam could check for any sign of fistula. Crohn’s disease can also cause skin tags in the anal canal that may contribute to leakage symptoms. This would also be seen on physical exam. I would recommend watching for fever, pain, or redness in this area as a sign of a developing infection. If that occurs, call your gastroenterologist to be evaluated.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
May 2016
Q: What foods should NOT BE eaten to avoid flare-ups? Is there a diet for UC that I can live with and reduce or not have flare ups?
A: There has never yet been a diet proven to help avoid flare-ups in adult patients with ulcerative colitis or Crohn’s disease. When in remission (symptom free), many people can eat a regular diet. However, there is not one diet that will suit everyone with ulcerative colitis or Crohn’s disease. I would recommend listening to your body and eliminating any foods you find trigger unwanted symptoms. During a flare, however, I will typically recommend a low dairy, low fiber/residue diet. This diet can help minimize symptoms that accompany a flare of inflammatory bowel disease. There are small studies in children suggesting that the Specific Carbohydrate Diet may be able to help control inflammatory bowel disease in some patients. More trials are being done and this is a potentially exciting new development in the treatment of inflammatory bowel disease. This diet is restrictive, however, so I would recommend that you discuss this further with your gastroenterologist and with registered dietician guidance.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
May 2016
Q: I will be starting the drug 6MP 50mg soon for my Ulcerative Colitis. What can I expect in starting this new medication? My doctor is currently weaning me of Prednisone. Will my appetite decrease during treatment? Any tips would help greatly?
A: 6MP is one of the common medications used for ulcerative colitis and may allow you to successfully stop prednisone. You should notice that your appetite returns to normal as you taper off prednisone. In addition, stopping prednisone can minimize any other long-term side effects of prednisone. After starting 6MP, you may notice some nausea or decreased appetite. I would recommend taking the dose at bedtime or with a meal to minimize this. This nausea often improves as your body adjusts to the new medication. 6MP can affect your white blood cell counts and your liver tests. This will not cause you any symptoms, but it is important to follow your doctor’s guidelines on lab testing to check for this side effect. About 1-2% of people can develop pancreatitis (inflammation of your pancreas) related to 6MP. Pancreatitis can cause pain above your belly button with nausea and vomiting. If this occurs, you should call your doctor because it reflects an allergy to 6MP, and the medication should not be continued.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: What is the benefit of infusion as opposed to injections of medication?
A: When considering the benefit of different medications (whether injection or infusion), the more important factors are which medications that you are considering and your personal inflammatory bowel disease story. I consider choosing injection or infusion as a very individualized decision, and I would recommend discussing your expected disease response with your gastroenterologist. I also consider your lifestyle when making this decision. With injection therapy, you have freedom to self-administer the medication without spending time at an infusion center. You also have more freedom to travel by taking the medication along with you on trips. Some people have difficulty imagining giving themselves a shot. However, with training, this often becomes an easy task. With infusion therapy, you need to have a set appointment to get your medication. This is often every 8 weeks, so between doses you have the freedom to forget about the medication. It is more difficult to get infusions while traveling, but you travel without medication for those 8 weeks.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: My 13 yr. old son was diagnosed with Crohn's in 3/2016. His dr. tried weaning him off the prednisone 30mg twice and it’s not working {having stomach pains/vomiting}. So this last time the dr gave him 6-MP 50 mg 1 a day,Flagyl , Pentasa & Lansoprazole but he is getting sick with stomach pain and vomiting. He is afraid to eat solid foods. He only eats applesauce, popsicles, chicken noodle soup and one carnation breakfast drink a day. Any suggestions with getting him to eat solid foods?
A: It is important to collaborate with your son’s physician and dietitian to create a feasible, realistic plan to advance solid food into his diet. Importantly, it is essential to work with the physician to make sure that his Crohn’s disease is under control and in remission and address the cause of his stomach pain and vomiting to minimize issues associated with eating. Also, the physician can advise the dietitian, you and your son of any specific foods that should be avoided given his Crohn’s disease characteristics. The presence of strictures or narrowings of the intestine may impact one’s ability to tolerate certain types of solid foods. (Narrowings can be identified by upper endoscopy/colonoscopy or by MRI imaging of regions of small bowel inaccessible by upper endoscopy/colonoscopy). Patients with strictures may be advised to avoid high fiber foods such as nuts, hard raw vegetables and fruits. If lactose intolerance is identified, lactose-free options or lactase supplements with lactose-containing foods may be advised to address associated symptoms. For some patients, certain foods may trigger or worsen symptoms. This varies between individuals. Identification and removal of specific ‘trigger’ foods may help to minimize your son’s fear of eating ‘all’ solids. The dietitian can work with you and your son to help address any nutritional deficiencies identified and maintain a well-balanced diet to make sure he meets his nutritional needs as best as possible given his specific circumstances. This is done by integrating his food preferences with physician recommendations to create a working plan. If the team decides to eliminate any foods, the dietitian can advise how to substitute other foods that will provide the same nutrients. CCFA brochure: ‘Diet, Nutrition, and Inflammatory Bowel disease’ may be a helpful resource. Link: http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
May 2016
Q: My 13 year old son diagnosed with Crohn's disease at age 6 has had an allergy to Remicade, and just recently Cimzia after two years of use. He also takes 6MP. Next choice for treatment is supposed to be Humira, but we are wondering what the possibility of another allergic reaction?
A: Although Remicade (infliximab) and Cimzia (certolizumab) are both anti- TNF agents, they are designed quite differently. You mentioned that your son experienced allergies to both of these medications. Adverse reactions to these medications are not always allergies. Typically, having a reaction to an anti-TNF agent would not deter a change to another anti-TNF agent. In fact, if a patient experiences a type of adverse reaction that requires a change in medication (decided by the physician) and the current anti-TNF agent has been effective in treating the Crohn’s disease, often the physician will switch the patient to another anti-TNF agent. Humira (adalimumab) is another anti-TNF agent. One of the most common adverse reactions of adalimumab is an injection site reaction. Clinical studies have reported injection site reactions in 12 to 38 % of adult patients treated with adalimumab. Most injection site reactions are mild and do not require stopping the medication. One cannot predict whether or not your son will develop a true ‘allergic reaction’ to adalimumab. Your son’s pediatric gastroenterologist knows the details of his Crohn’s disease and the types of reactions he has experienced. He/she will be the best resource to discuss his treatment plan and your concerns.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
April 2016
Q: I've had UC for 30 plus years and have recently been diagnosed with a rectovaginal fistula at the dentate line. It has been recommended that an abdominal proctocolectomy with an end ileostomy be performed due to the fact that the fistula will be at the level of the cuff if any pouch is made. Does this require an open surgery and is there any way that a pouch or IPAA can be successful?
A: A rectovaginal fistula is a communication between the rectum and the vagina. Most are due to obstetric injuries. Other causes include irradiation, malignancy, congenital malformations, and inflammatory bowel disease. Rectovaginal fistulas are uncommon complications of chronic ulcerative colitis, and are more often associated with Crohn’s Disease. Many are asymptomatic and found incidentally. If the fistula is symptomatic, methods of treatment such as excision and primary layered repair, fistula plug placement, endorectal mucosal advancement flap can be performed. Success rates range from 50-95%. Rectovaginal fistulas associated with Inflammatory Bowel Disease have lower success rates. Having UC for 30+ years places a person at risk for the development of dysplasia and malignancy. Surveillance colonoscopies are done annually to identify these changes. If high grade dysplasia or malignancy is found, a total procto-colectomy with either end ileostomy or construction of an ileal pouch-anal anastomosis is performed. These procedures are also done for medically refractory cases of ulcerative colitis. Removal of the entire colon and rectum with creation of an end ileostomy is usually performed if the patient has poor anal sphincter function and incontinence is an issue. The total procto-colectomy with ileal pouch-anal anastomosis or “J-pouch” procedure restores near-normal bowel function by creating a neorectum from the terminal ileum. A mucosectomy (stripping the mucosa of the anal canal to the dentate line) with a hand-sewn pouch-anal anastomosis can be performed. Mucosectomy is often associated with injury to the anal sphincters, and impaired fecal continence may be a problem post-operatively. A diverting loop ileostomy is usually performed to allow the anastomosis to heal, and the ileostomy reversed 8-12 weeks later. The operation can be done via an open or a laparoscopic approach. A pouch procedure may be an option for you.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2016
Q: I was diagnosed with UC in 2014 . My dr. prescribed me Lialda but I still bleed with every trip to the bathroom . My flare ups have progressed and he only prescribed a steroid . While on medication is it common to still be bleeding every time I use the bathroom?
A: If you are experiencing ongoing bleeding and flare ups despite Lialda therapy, it is important to be sure that you do not have an infection, Clostridium difficile, which may cause diarrhea and bleeding. If there is no evidence of infection, it is possible that your dose of Lialda is not high enough. Your doctor may consider increasing your Lialda to a dose of 4.8 g (4 tablets) daily. Addition of a mesalamine suppository or enema may help to increase the dose of mesalamine in your rectum and sigmoid colon, to improve disease control. Lialda begins to be released in the end of the small intestine. By the time the medication reaches the rectum, the concentration of the medication is lower and some patients need additional mesalamine delivered directly to the rectum by suppository or enema to control disease. If this does not improve your disease control and you continue to have diarrhea and bleeding, you should be evaluated with a colonoscopy to reevaluate colon inflammation. If there is ongoing active inflammation despite your therapy, you may need to consider an immunosuppressive therapy such as azathioprine, mercaptopurine, infliximab, adalimumab, golimumab, or vedolizumab to gain control of your disease, and to avoid recurrent steroid use, which is the most dangerous therapy in the long term.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2016
Q: My Daughter is in her 50's and has had Crohn's most of her life, losing many feet of intestine due to surgeries. Many body parts are able to be replaced...heart, liver, lungs, skin, etc...why can't the intestine be replaced?
A: Despite advances in medical therapy for Crohn’s disease, a large proportion of patients with Crohn’s disease will require surgery within 10 years following diagnosis. Repeat surgical resections may result in short bowel syndrome, or an inability to absorb adequate fluids and nutrients. These individuals may require ongoing use of intravenous total parenteral nutrition (TPN) for nutrition. In patients beginning to fail TPN, small bowel transplantation may be considered. However, experience in small bowel transplantation for inflammatory bowel disease is very limited. Outcomes are generally poor, with low rates of survival at 5 years. Complications of the procedure include organ rejection and recurrent infections due to immunosuppression. Small bowel transplantation for Crohn’s disease may be life-saving in a small number of patients, and this procedure may become more common as surgical and postoperative care improve over time. However, further research is needed to better understand bowel immunology, the role of the gut organisms (microbiota) both in Crohn’s disease and in rejection, immune pathways involved in Crohn’s disease and intestinal transplantation, to improve outcomes with small bowel transplantation for Crohn’s disease.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: I have been diagnosed with Crohn's. I frequently get blisters on the roof of my mouth. Is it normal to get these blisters in my mouth? I am being treated with Imuran.
A: Crohn’s Disease can involve any part of the GI tract from “mouth to anus”. The mouth blisters may very well be due to Crohn’s Disease and may respond to a change in therapy, including use of a topical steroid medication. However, you would also want to exclude a drug side effect or certain viral infections that could cause similar findings.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I am a 30 year old female, and I want to get pregnant. I have been following up with my GI, and haven't had any flare-ups in over 2 years. She just did a sigmoidoscopy and wants me to wait due to some inflammation in the rectum. The doctor has informed me that everything needs to be clear/in remission. What are the risks of getting pregnant with inflammation in the rectum and if it is necessary to wait as I have been feeling great with no symptoms?
A: In general, pregnancy outcomes are better if underlying inflammatory bowel disease is in remission. Your question reflects the distinction between “clinical” remission (the absence of symptoms) and “deep” remission (the absence of symptoms and signs of inflammation). The latter usually implies a normal endoscopic appearance of the bowel. Most of the data regarding pregnancy and disease activity has relied on clinical remission. It would be helpful to know exactly how much inflammation was seen. If the inflammation is minimal (based on accepted systems such as the Mayo Clinic score ) and you have no symptoms, it would be safe for you to proceed with pregnancy. If the inflammation is more significant than suggested by symptoms, a change in treatment may be indicated before proceeding with pregnancy.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: I am going to be having my 5th Remicade treatment mid- March. I feel well. Is it ok for IBD patients to exercise? How long after infusion should I wait before exercising?
A: It is safe for patients with IBD to exercise if symptoms are controlled and they are not anemic. It is safe to exercise after receiving Remicade but probably best not to do so on the day of the infusion.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I have UC and after long term steroid use I’ve gone from a normal bone density reading of 1.2 (2 yrs. ago) to a 10. PC wants me to start on BONIVA 1 pill per month. I am currently on Entyvio. Can Boniva cause side effect or trigger UC symptoms?
A: Bone density loss is a common side effect of steroids and requires aggressive treatment. Drugs like Boniva can be used in patients with ulcerative colitis and usually do not cause a flare in symptoms. However, GI side effects such as abdominal pain, constipation, or diarrhea can occur. There are no reported interactions between Boniva and vedolizumab (Entyvio).
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I have had Crohn's disease for 25 years. I am on Remicade and Pentasa. I have recently been diagnosed with Peripheral Arthritis. The rheumatologist recommended methotrexate. Are there other medications that can help with the symptoms besides going on Methotrexate?
A: One option is an older drug, sulfasalazine, which can reduce joint inflammation. It could be substituted for Pentasa since it is a combination of a sulfa antibiotic and 5- ASA (the active drug in Pentasa). However, it can also be associated with side effects such as headache, nausea, and abdominal pain. It cannot be used if you have a sulfa allergy. Low dose Prednisone can also be used but side effects make long term use difficult. A third option would be celecoxib, a non-steroidal anti-inflammatory drug which may cause less intestinal irritation. While this may be effective for the arthritis, it can be associated with a flare of your Crohn’s Disease.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: My 22 year old son has had Crohn's for 14 years. He has been on Remicade for the past 9 years. He recently relocated and his new doctor immediately suggests a colonoscopy then switching to Entyvio because possible side effects are less. He has been symptom free while on Remicade so I'm questioning why switching since it currently works and he has had no adverse reactions. Should he make the switch or stay with the current course until it stops working or a flare up?
A: If he has had disease that was visualized by colonoscopy in the past and he has not had a recent exam (in last 2-3 years), it might be reasonable to do a colonoscopy to confirm that he is in full or “deep” remission. If remission is confirmed, there is no current data to suggest that switching to vedolizumab (Entyvio) is any safer. If he has significant inflammation noted, a change in treatment may be warranted. An observational study called TREAT does confirm the relative long term safety of infliximab (Remicade).
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I was diagnosed with UC in 2012. I am in remission with lialda. My AST and ALT liver enzymes have gone from just slightly elevated (a couple points above normal range) to 152 and 214 respectively in three months. I am a non-drinker, not overweight, do not have diabetes. Can this be a medication side effect? Should I be concerned?
A: Though any drug can cause elevated liver enzymes, this is not a common side effect from mesalamine (Lialda). Drug withdrawal may be the only way to prove or disprove this, short of a liver biopsy. There are a number of other causes that need to be excluded, including viral, autoimmune, and metabolic diseases. There are blood tests that can screen for these. An inflammatory condition of the bile ducts called Primary Sclerosing Cholangitis (PSC) can be seen in patients with ulcerative colitis. This is usually associated with elevations in your serum alkaline phosphatase in addition to the AST and ALT. If further blood tests do not reveal an answer, an MRI exam of the liver and bile ducts may be warranted.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: Our 13-year-old son was diagnosed with CD in 2014. He has been responding well to treatment with Apriso and Mercaptopurine (6mp). However, he has developed severe acne, molluscum contagiosum, and recently, a mild case of shingles. He also has hyperpigmentation across his upper chest. We test the symptoms accordingly, but is there anything complimentary treatment to help protect and soothe his skin, such as coconut oil or other treatments or remedy?
A: The skin issues were not caused by IBD so it is hard to say if any specific medications could have prevented them. Molloscum contagiosum is caused by a pox virus. When taking immunosupression such as the 6mp, molloscum may have more lesions and may last longer. Shingles is also caused by a virus and caused by prior exposure to the varicella zoster which causes chicken pox and gets reactivated. The immunosuppression may have increased the chance of this occurring. Acne is common in a 13 yo. Use of prednisone may increase the chance or worsen acne. Use of Isotretinoin is controversial in IBD patients as there are some case reports of symptoms of IBD starting after this medication. There is not current evidence to confirm or refute this. Most other acne especially topical ones should be ok One definite association is that use of 6MP/imuran increases the risk of skin cancer over a patient’s lifetime. In patients that use or have used 6mp, it is recommended that they use sunblock, wear protective clothing to reduce sunlight exposure and have yearly visits with a dermatologist. Alternative therapy which may have benefit, one could consider would be manuka honey, aloe vera and tumeric and water. There is not much data to recommend but there is likely not much side effects. There are some skin manifestations that have known associations with IBD. The first is called erythema nodosum which tends to be tender red nodules on the shins. It occurs in about 15% of IBD. It is usually self-limiting meaning it goes away with out any treatment. Pyoderma gangrenosum is more rare at 0.4 to 2%. It generally looks like ulcers and the most common place is on the leg. Psoriasis causes red and scaly patches that may be itchy and shares some genetics with Crohn’s disease so it can be more common in patients that have Crohn’s compared to the rest of the population. It has also reported to be a side effect of anti-TNF medications.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: My son is 17 and diagnosed with uc at age 15. He is suffering from severe insomnia and has missed a lot of school this year due to his sleep issues. What is the best treatment for insomnia? Can his UC medication cause insomnia?
A: Sleep is important in IBD. It is both important in that fatigue is a common complaint in IBD as getting quality sleep may help with. There is also thought that getting insufficient amount of sleep is pro-inflammatory. It has been shown that sleep disturbances is common in IBD with both patients with active and inactive disease. Sleep disturbances are worse If disease is active, patients may have stooling overnight which may cause them to get out of bed often and make it difficult to sleep. Prednisone may cause patients difficulty trying to sleep. This often improves on lower doses and further after stopping the medication. There is less insomnia if all of the medication is taken in the morning. Some patients with inflammatory bowel disease may have depression or anxiety which may affect sleep. Some patients may also have increased fatigue, which may cause them to be in bed during the day. This poor sleep hygiene may affect the ability to fall asleep during an appropriate time. Daytime sleeping should be avoided. Trying to exercise in the morning and not at night might be helpful. If the above does not work, consider discussing trying melatonin with you son’s physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: My daughter is 12 years old and was diagnosed with severe Ulcerative Colitis 5 1/2 months ago. She started on Remicade in December and her ESR and CRP are in normal ranges and her iron is back up. About 48 hours after her 3rd infusion, she experienced severe stomach pains that were intermittent for 2 days. She has also continued to have some mild bleeding (not with every stool) and days of discomfort and stomach aches. Is this reaction typical with Remicade use?
A: The common symptoms for Ulcerative Colitis include diarrhea, abdominal pain and blood in stool. The improvement in the inflammatory markers is a good sign and likely the Remicade is causing an improvement in the colon. It is unclear just because the inflammatory markers improved that there was a full healing. There is a chance that abdominal pain and bleeding may due to the underlying disease. These symptoms are not likely due to the Remicade itself and are not usually a side effect of the medication. One should consider another cause such as constipation as you did not mention stool consistency. As the inflammation improves, the diarrhea may resolve and hard stool moving through the colon may cause abdominal pain and blood in the stool. If there is hard stool, trial of a stool softner may resolve the symptoms and would suggest the likely cause. Another thing to consider is sending a stool culture and c diff as these infections can also cause abdominal pain and blood in the stool. If symptoms have not resolved, it can be investigated if disease is in remission. Mucosal healing is the goal so if there is not full treated disease then it must looked at how to maximize medical management. If disease in remission then non-IBD causes must be investigated.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
February 2016
Q: Can low dose naloxone be successfully used in treating IBD?
A: Low dose naltrexone represents a potentially attractive therapeutic option in IBD given the safety profile. There have been two small studies to date, one in adults and the other in the pediatric population. Unfortunately for the primary outcome of clinical remission in adults, naltrexone did not demonstrate a statistically significant benefit. They did meet their secondary endpoint of modest clinical improvement by one cut-off used, but did not for the other. Similarly, they did not demonstrate a statistically significantly higher rate of endoscopic remission in those receiving naltrexone compared to placebo, though endoscopic improvement, which can be more subjective, did demonstrate a significant benefit. The drug was tolerated well in both patient populations. Given the mixed data on benefit and lack of longer follow-up, I do think larger confirmatory studies are going to be required before this agent becomes a regular component of IBD therapy.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2016
Q: What research is being conducted on intestinal transplants? Is this a viable option for treating IBD?
A: Intestinal transplantation is most often considered in the setting of Crohn’s with multiple resections or those with ischemic bowel injury requiring a significant amount of small bowel be resected. Specifically in IBD, they are considered only in cases where intestinal failure and TPN dependence due to the significant complication rate and risks, as with any organ transplantation. This surgery is not performed as a primary treatment for CD, and is really reserved only for those with short gut syndrome.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
February 2016
Q: What progress is being made with Helminth (worms) therapy
A: It has long been hypothesized that Trichuris suis (the whipworm) and other helminths may play an immunomodulatory role. Mouse models have demonstrated that mice infected with these worms have less robust immune responses when exposed to harmful bacterial components that would normally stimulate the immune system, and that this effect may persist for some time after helminth infection. These findings, replicated in vitro using human cells, have prompted several researchers to pursue them in clinical trials (quite appropriately!) In addition to several case reports and case series demonstrating a possible benefit in IBD, there have subsequently been two multicenter placebo controlled trials, one in UC by Sommers and colleagues, and the other by Sandborn and colleagues in CD. In the UC study, there was no significantly increased rate of clinical response or remission, though symptom scores were modestly improved in those receiving the helminths compared to controls at 12 weeks. The CD study was performed only to assess the safety of the therapy, with complication rates similar to placebo. Based on these two studies, I do not recommend the use of helminth therapy in IBD at this time, as further research is required.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
February 2016
Q: Is the drug in clinical trials called Mongersen effective for IBD?
A: Mongersen is a new type of immunosuppressive medication targeting a molecule called SMAD7. Phase 2 studies demonstrated very promising results at 2 weeks, with remission rates of up to 65% and response rates up to 72% depending on the dose. The medication was well tolerated. These results are incredibly promising. However, the data are from a Phase 2 study, which are typically smaller and best designed to determine the optimal dosing for new therapies being assessed, while also measuring initial safety. Larger phase 3 trials are currently being conducted to assess the efficacy and safety of this new drug in a much larger patient population with IBD. We are eagerly awaiting the results of this study, which have not yet been published.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
January 2016
Q: I have UC and my OB-GYN knows little about pregnancy and IBD. When I’m ready to get pregnant will I need to switch to a new OB-GYN. How can I find an OB who knows how to treat pregnant women with IBD?
A: Your local gastroenterologist is likely the best resource for an OB that is familiar with IBD. I recommend all my pregnant IBD patients are followed as high risk, so by a maternal fetal medicine specialist. They may not deliver the baby, but they monitor for growth (very important since IBD patients can be too small) and for complications in the mother. There is an article to help OB’s take care of pregnant women with IBD. The reference if you would like to share with your OB is Care of the Pregnant Patient with Inflammatory Bowel Disease. Mahadevan, Uma and Matro, Rebecca. Obstetrics and Gynecology. 126 (2): 401-412, August 2015.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I would love to know what medications are "safe" and which ones aren't during pregnancy.
A: The unsafe medications are methotrexate and thalidomide which should be stopped at least 3 months, ideally 6 months, before getting pregnant. They are both associated with severe birth defects. I will also often take patients of mesalamine as it has dibutyl phthalate in the coating which in animals is associated with birth defects. An increase in birth defects has not been shown in humans with mesalamine, but as none of the other mesalamine drugs have DBP, I switch. The other IBD medications are generally low risk but discuss further in detail with your GI doctor as every patient is different.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: Is there any research on taking birth control pills with IBD? Can birth control pills trigger a flare up?
A: You can take birth control pills with IBD. There is no data associating it with an increase in flares. However, birth control pills and IBD are associated with an increase in blood clots. If you smoke it is even worse (so don’t smoke and if you do, don’t take birth control pills!!!). I recommend an IUD for my patients as it is only progesterone so there is no increase in blood clots. If you do use OCP then use the lowest hormone amount possible.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have been experiencing a lot of bleeding and blood clots. I often have the urge to go to the bathroom but I am unable to pass anything but blood. I’ve been on prednisone since Dec 1, 2015 with no relief. My doctor has stopped my Asacol and Humira in preparation for me starting Entyivo in the next week. Is it normal not to be able to pass stool when in a flare up?
A: An exacerbation of ulcerative colitis or Crohn’s can sometimes present with difficulty passing bowel movements (rather than diarrhea) due to significant inflammation in the rectum (UC or CD) or due to a stricture from CD. It is important to inform your physician of these changes, so your medical treatment can be modified.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have CD. I also have achalasia, treated with Heller Myotomy surgery. Difficulty swallowing is now under control but still have regurgitation, nausea and discomfort in upper torso. I also belch excessively (300 +/day). I’m having a hard time finding information for this atypical CD symptom. I would like to learn more about this topic what can you tell me about this condition and are there any research articles on this issue?
A: The lower esophageal sphincter (LES) fails to completely relax in achalasia leading to difficulty swallowing food. The most effective treatment for this is a Heller myotomy, the cutting of the LES resulting is a constantly relaxed LES. This allows food not to get stuck and accumulate in the esophagus. Relaxing the LES, though, increases the risk for gastroesopheal reflux. An intact LES prevents gastric fluid and debris from refluxing backwards into the esophagus. It is important to follow gastroesophageal reflux precautions such as keeping the head of the bed elevated when sleeping and avoid eating 2-3 hours prior to sleeping. Acid suppressive therapy will likely be needed as well. Your physician can further counsel you on your symptoms and treatment.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have lymphocytic colitis and would like to know if there is a special diet for the condition?
A: Lymphocytic colitis is a type of microscopic colitis. The inflammation is only visualized under the microscopic and the inflammation has a specific pattern. There are two forms of microscopic colitis, collagenous colitis and lymphocytic colitis. As far we know, there is no specific diet that can treat microscopic colitis, nor a diet that makes the condition worse.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have Crohn's Disease and have read that I should avoid leafy greens, including kale, spinach, salads and bread high in fiber. If I remove these foods from my diet, what are the best alternative sources of fiber?
A: Insoluble found, found in many vegetables and fruit, is not recommended with active Crohn’s disease or in Crohn’s stricturing (areas of narrowing in the intestine) disease. Insoluble fiber may cause increased discomfort (abdominal pain and/or diarrhea) in the setting of active Crohn’s disease and not recommended. In the setting of Crohn’s disease stricturing disease, since insoluble fiber is not completely digested there is a risk of insoluble fiber getting stuck in a stricture and causing blockage. Many fruits and vegetable may be still ingested if cooked. Lists of foods with insoluble fiber are included in the Diet, Nutrition, and Inflammatory Bowel Disease brochure at the CCFA website. Once Crohn’s disease is in remission and there are no strictures, a regular diet may be resumed.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I had a resection in April 2015 and I’ve had a lot of problems since. I am now battling indigestion and heart burn. I take famotidine twice daily but it does not help. What are some other treatment options?
A: Symptoms of indigestion and heartburn suggest gastroesophageal reflux. Treatment for gastroesophageal reflux includes dietary and lifestyle modification and acid suppressive medical therapy. Your physician can review your symptoms in more detail to see if there is a trigger and if/how it may related to your surgery. Medication options aside from histamine receptor antagonists (such as famotidine) include proton pump inhibitors.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have ulcerative colitis and chronic Epstein Barr infection. I’ve had both conditions since 2008. I have recently started Entyvio with a rise in my EB levels, but I am continuing with treatment as no one seems to know the significance of a rising level (lymphoma was ruled out). Is there any research or articles on uc and Epstein Barr infection?
A: Epstein-Barr Virus (EBV) is a ubiquitous, with most of the adult human population exposed over the age of 25. The concern in patients with inflammatory bowel disease (IBD:ulcerative colitis or Crohns’ disease) is related to EBV exposure and immunosuppressant therapy. In patients that have not yet been exposed to EBV, there is concern that a new exposure to EBV may induce a lymphoproliferative disorder when a patient is taking an immunosuppressant. There is also concern for reactivation of the virus leading to a lymphoproliferative disorder when taking immunosuppressants. Both scenerios are rare. In a study by Linton et al published in Alimentary Pharmacology and Therapeutics journal in 2013, IBD patients were more likely to reactivate EBV (serum viral EBV DNA detected) and immunosuppressants further increased the risk of reactivation of EBV. Being exposed to EBV is not the same as having active virus. If you have active virus, your medical team will need to weigh the risks of continued medical treatment and evaluate other potential treatment options such as other medical therapies and surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I am newly diagnosed with Crohn's. I had no obvious symptoms, other than iron deficiency anemia. I am 68 years old, and the doc said I've probably had the condition for decades. Results from a PillCam test showed ulcers in the small intestines, and blood work showed 2 markers suggesting Crohn's. The doctor put me on Pentasa. I never had any symptoms before, but with the medication I now get mild pain and gas. Can this be a medication side effect?
A: Gastrointestinal symptoms (abdominal cramping and diarrhea) can occasionally occur with Pentasa and cease immediately after discontinuing Pentasa, a type of 5-aminosalicylate (5ASA). This is not an uncommon side effect of a 5-ASA. I recommend notifying your prescribing physician so alterative therapies can be considered.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2015
Q: I had a 2-step jpouch surgery in 1996. For the last two years I’ve had significant problems with bleeding ulcers in the pouch. I also had 3 APC (argon plasma coagulation) procedures to try to stop bleeding in last 3 months and 8 iron infusions in last year. I’m still bleeding. Would these types of problems indicate that its time to go with perm ileostomy? How extensive is this procedure?
A: While undergoing a pouch procedure can improve overall quality of life, many complications such as stricture, stenosis or pouch dysfunction often occur. Pouchitis is the most common complication following pouch surgery, and is a common cause of bleeding and anemia. Inspection of the pouch by endoscopy may show diffuse inflammation which bleeds easily when touched. Less common are discrete ulcers which bleed. Although pouchitis may be the cause of these ulcers, it is important to note that sometimes the original diagnosis of ulcerative colitis may have been incorrect, and that Crohn’s disease may actually be the underlying disease. This is best diagnosed by biopsies of the ulcers. If the biopsies show chronic inflammation consistent with pouchitis, treatment with steroid enemas or oral antibiotics such as Ciprofloxacin or Metronidazole may be of benefit. If biopsies suggest Crohn’s disease, medical management with TNF-alpha blockers or 5-ASA enemas may be helpful. If medical therapy fails to improve your symptoms, surgical treatment including removal of the pouch and conversion to an end ileostomy may improve the overall quality of life. This type of surgery can be very difficult due to extensive scarring, and should be performed only by surgeons comfortable with re-operative pelvic surgery.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
December 2015
Q: My 15 year old daughter was diagnosed with UC about a year and a half ago. She has been on Remicade & Pentasa for the last 6 months. She tried a 6mp over the summer and developed pancreatitis. Her doctor would like to try methotrexate now. Can you tell me more about this treatment and if a patient can experience symptoms similar to 6mp side effects?
A: It's not clear from the question whether your daughter is currently symptomatic, but I'm taking from the question that she is not. I suspect the situation is that your provider is interested in combination therapy which does seem to increase the likelihood of response, as well as prolong the benefit, of anti-TNF therapy (Remicade). The specific risk:benefit assessment should be discussed with your gastroenterologist, but under the right circumstances- such as trying to prevent or decrease the production of antibodies against Remicade- there may be a role for methotrexate. This would not be the right forum to discuss the side effect profile of a drug, but methotrexate does not have the same association with pancreatitis as 6-MP. If the decision is made to proceed with methotrexate it may administered orally or as in injection once weekly. Some laboratory monitoring is typically utilized at the outset, but it is generally well tolerated. While not generally utilized independent of other drugs in ulcerative colitis, it can be quite effective used as described above to aid in efficacy and in prolonging the benefit of Remicade.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
December 2015
Q: My 6 yr old was diagnosed with uc 6 months ago. Shortly after his diagnosis and a couple MRIs, his doctors diagnosed him with Chronic Recurrent Multifocal Osteomyelitis (CRMO). CRMO has caused constant leg pain. His CRMO symptoms appear to worsen whenever he is having a UC flare. He currently takes methotrexate injections. There is not much literature about this dual-diagnosis. How successful are the two diseases are managed. What is the prognosis for patients with these conditions?
A: CRMO is quite a rare condition and the reports of its association with IBD are rarer still, but there has been some literature accumulated over the past 15 years or so mostly through small case series. There are no specific guidelines regarding management of CRMO and IBD, but general consensus at this time seems to be that for most patients controlling the bowel disease leads to control of the CRMO. Many of the drugs that have been discussed for management of CRMO are also used to manage IBD with the possible exception of pamidronate. Over time CRMO seems to follow a course of waxing and waning symptoms, but when associated with colitis, while there is limited literature, a reasonable target would seem to be control of the bowel disease first with specific and independent therapeutic consideration of CRMO only if symptoms linger once the bowel disease is quiescent.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
November 2015
Q: My medication, Asacol HD, has become so expensive. Do you know of any way to save on this medication? I have Insurance, but will soon be on Medicare.
A: If you have commercial insurance the company that makes Asacol offers discount cards that may help. These are not able to be used however once you have Medicare or Medicaid. In general Lialda and Apriso tend to be cheaper and insurance companies prefer these. They are an even substitution for Asacol as they are all mesalamine products.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: What is the efficiency of Mangosteen (pill or juice) in Crohn's patients? Is there a forum where Crohn's patients rate or comment on their experience with Mangosteen ? What is the risk of allergy since Crohn's disease patients have often food allergies?
A: Mangostene is the latest in food fads claiming to cure just about anything. The truth is that mangostene although a delicious fruit is not any more nutritious than any other less exotic fruit like strawberries, pomegranate, oranges etc. Food allergies are always something to take into consideration whether you have IBD or not so if you are going to try some just proceed with caution if you have multiple food allergies to fresh fruits.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I was diagnosed with Crohn's in 2006 and had a bowel resection 2008. I never show signs of inflammation on any of the blood or stool samples. Is this uncommon?
A: No this is not uncommon. Depending on the extent of your disease prior to surgery it could take a while to come back or if you are one of the lucky few there is a very small chance that it may not. Again that depends on the extent and location of the disease prior to surgery. There is no way to know for sure. It is certainly encouraging though but should be followed closely. The current recommendation would be to jump back in with a biologic medication at the first sign of inflammation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: I've been experiencing an UC flare up since August 2013. I took lialda and asacol without any major improvements. In September 2014 my doctor put me on 40 mgs of prednisone and 200 mgs of 6mp. This medication regimen initially helped but by Aug 2015 I was back into a severe flare-up. In Aug 2015 I had my first Remicade infusion and responded very well. After 2nd infusion my symptoms came back. Now my doctor wants to try me on Humira. What are the chances humira can get me into remission?
A: Tough to say. It might be that initially you got the best response from the prednisone and the 6MP may not have helped. The Remicade sounds like it may have helped so unless you have developed antibodies to it (which can be checked with a test) you may just need to have your dose increased if this has not been done. The other option is to consider an adjunct medication like methotrexate which can help on its own and boost the efficacy of the Remicade. 6MP works like this as well. We call it dual therapy because you would take both Remicade and methotrexate or Remicade and 6MP at the same time. It would be good to exhaust the Remicade option before moving to Humira which is very similar to Remicade. Lastly they could switch you out of class to Entyvio which works a bit different than Remicade and Humira if these other things don’t work.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I have Crohns disease, and pain is a major factor in my daily life. Where can I go to have a doctor evaluate me and get me on a long term pain medicine? I would like to know if going to a pain management center is a good option?
A: Pain management is a good option so that you can have a good pain regimen that does not lead to addiction. The ultimate strategy however is to deal with any underlying reason for the pain ( ie inflammation, stricture, obstruction, adhesions, abscess etc.). By dealing with these underlying causes of pain, it should eliminate or lessen the need for pain medications.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I’m on pain meds for Crohn’s. I went from oxycodone to fentanyl patches. While reading the side effects it says constipation is a side effects, which I don't have and diarrhea which do have. What is the best pain medicine to take with Crohns?
A: You will need to work with your provider to figure out where the pain is coming from as each type of pain is addressed differently. The ultimate pain medication is NO pain medication. Pain medication is a band aid. It is best to identify and treat the underlying cause of the pain so that no pain medication is needed.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I am thinking of switching from Remicade to Entivyo due to skin rashes. Remicade has kept me in remission for 10 years. What is the likelyhood that I develop rashes with Entivyo?
A: It is very unlikely that you will develop skin rashes with Entyvio. We often switch people from Remicade to Entyvio if they are getting rashes. The only thing that is not known is if the Entyvio will work for you as well as Remicade. So if the rashes are only minor, you may want to consider staying with Remicade and treating the rashes topically with a cream. But if they are severe or debilitating then switching to Entyvio might be a better option.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I had an ileo-colic re-section in May 2014 after structuring Crohn's in my ileum. I had a follow-up colonoscopy at 6 months that was clear with no disease. I am currently on no meds. What interval and testing do you suggest for surveillance going forward? At what point would most doctors initiate medical treatment ? I am in a low risk category, age 56, disease onset age 47 and non-smoker.
A: Some providers would start you back on a biologic within a few months post surgery to be safe and avoid the constant monitoring. Others would just closely monitor your progress and at the first sign of inflammation, start you back on a biologic medication. Either way, you are correct that close surveillance will be warranted. The best tools we have for monitoring this is a CRP and fecal calprotectin. CRP is a blood test that will let us know if there is any inflammation in your system but this is not a reliable marker for everyone. Fecal calprotectin is a stool test that is much more specific and reliable as a marker of gut inflammation itself. If any of these were elevated or if there was any question about the test results vs your symptoms then a colonoscopy would be the next step to evaluate how you are doing. We try to avoid serial colonoscopies however by using either or both the CRP and fecal calprotectin as a more regular form of surveillance.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My daughter was diagnosed at 13 and since that time has had terrible anxiety. Is anxiety brought on by ulcerative colitis? is this common in teenagers
A: Anxiety and psychological distress is common in patients suffering from inflammatory bowel diseases, including ulcerative colitis. Psychological evaluation and support by trained experts is highly recommended. It is frequently difficult to discern whether the disease and flares bring about the psychological distress, or if periods of emotional stress can induce disease flares. There is intense communication between our brain and our intestines, frequently related to as the gut-brain axis. Therefore, it is possible for gut inflammation/stress to induce anxiety, and vice-versa.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: Is it ok to drink coffee if you have ulcerative colitis?
A: The short answer is yes. Keep in mind that coffee does act to move the bowels for many people. That is, it causes the large intestine (colon) to contract and to move stool along. This effect seems to be caused by ingredients other than caffeine so switching to coffee with lower caffeine content may not change the effect. If you are already symptomatic with cramps and diarrhea, this effect from coffee consumption may increase these symptoms. Therefore, the best way to answer this question is to see how the coffee affects you individually.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My results for the IBD differentiation blood test showed a high proteinase 3 (PR3) autoantibody levels, of 3.4 ai, with a note attached from the lab about a high result indicating an active disease state of a syndrome called wegener's, or GPA. My GI doc just said it supported his observations and diagnosis of UC. Are there other tests that can be done to confirm a diagnosis of UC?
A: You had a test that is in a category called “serology”. This looks for antibodies that your body is making. Antibodies are made by cells of your immune system in response to proteins found on foreign invaders such as viruses and bacteria and such antibodies are an important part of our body’s defense. In individuals who have a disease or illness that involves their immune system, it is common for them to also make a antibodies against proteins found in their own bodies. These “self-directed” antibodies are what were measured by the test you had and the result is consistent with you having a condition that involves your own immune system. The best way to know if you have ulcerative colitis is the entire clinical picture including your history, physical exam findings, negative stool cultures and findings on your colonoscopy.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: Colonoscopy vs MRI? If one has already had one or more colonoscopies, and the GI is asking for a follow-up test, is an MRI a good alternative? Is it easier for a patient to do an MRI? Anything unpleasant to expect? Colonoscopies are quite an ordeal!
A: I am sorry to hear that you had such difficulty with your colonoscopy. An MRI and colonoscopy look at different aspects of your gastrointestinal tract. Keep in mind that your intestine is a tube. The colonoscope looks at the inner lining of that tube. The MRI looks across the wall as well as the rest of your belly (abdomen). So, if the question is whether your IBD is actively causing inflammation of the lining of your intestine, the best test is a colonoscopy. If the question is whether there is damage occurring across or outside the wall of the intestine, an MRI is a better test.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I was diagnosed with Crohn's 3 years ago. Since then, I have had hemorrhoids with a lot of bleeding, ulcers, inflammation and started Humira because of a burning sensation in my upper-center stomach. I've been on the Humira for 3 months and the burning sensation is back. I've told my doctor and no action has been taken. The pain almost leaves me crippled and unable to walk around to accomplish daily activities. Is there anything I can do for this pain or something I should be telling my doctor?
A: I am sorry to hear of this pain. The question is why are you having this pain? Keeping in mind that Humira (generic adalimumab) is not a treatment for hemorrhoids, is it possible that you have Crohn’s disease and the “hemorrhoids” are actually swelling in the area from active Crohn’s disease? If so, this is likely the reason why your doctor started you on Humira. The discussion now needs to center on finding the cause for your pain—is your Crohn’s active elsewhere in your gastrointestinal tract? To answer this question may take more testing to look for such IBD related inflammation.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My 30 year old daughter with cd has had shingles 2 times in the last 5 years. Her GI has recommended that she take Humira. He wants her to get a shingles vaccine prior to starting treatment. How effective is the shingles vaccine in patients on a biologic therapy?
A: This is a great question for your daughter to also discuss with her primary care physician. If it is decided to take the shingles vaccine, bear in mind that this is a live viral vaccine and must be given at least 6-8 weeks before any immune modifying therapy such as Humira is started.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: I was diagnosed with UC in 2014. This past spring my UC flared up and I began to bleed when I took Zyrtec for my seasonal allergy problem. I am having problems again with my allergies for fall. I am unsure which allergy medicine to take. I am almost in remission with my UC and I don't want any more flare-ups. I am presently taking Lialda, Rowasa and Anusol Supplement. I only take Tylenol for pain when needed. Is there an OTC allergy medicine that will not trigger a flare up?
A: It is a general rule in medicine that any given person can have any given side effect on any given day. That being said, it is not generally reported that well controlled UC will become active from taking Zyrtec. Therefore, it seems fine to try it again keeping in mind that a second such experience should prompt you to take a different allergy medicine.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My son is 24 yrs. old and has had Crohns for 12 yrs. I have been doing a lot of research on the use of medicinal cannabis oil and the relief of Crohns symptoms. Any research on medical cannabis oil and if it is used does it show up in your urine?
A: My understanding is that depending on the dose, this can change a urine drug test positive. Regarding its use for Crohn’s disease, marijuana is used recreationally because of its mood altering affect. Recognizing this, it can affect how one feels. Whether it actually has a biologic effect on the disease process of Crohn’s is currently under investigation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: My daughter has Crohn’s and is away at college. She thinks that the change in her diet and eating white rice is causing greater discomfort. Many things I read show white rice can be good to eat during flare-up. Is it possible that the rice is causing symptoms and that she should avoid eating rice?
A: There are several different issues. The most important is what does one we mean when they say a “flare up”? Does this mean that one is experiencing gastrointestinal (GI) symptoms or that the disease is progressing and so that there is more inflammation that is leading to the symptoms? Whether one has IBD or not, they may experience any one of the common GI symptoms: abdominal pain, nausea, vomiting, diarrhea or constipation. There are biological, psychological and social factors that can all lead to GI symptoms. We even talk this way in common parlance—“gut wrenching experience”, “butterflies in the stomach”, etc. Certainly changes in diet can affect us and lead to GI symptoms. When one has IBD, it is easy to make the assumption that a change in GI symptoms means a change in the disease or “flare up”. Actually, it is more common that with a change in environment and diet, your daughter is experiencing these symptoms somewhat independently of her Crohn’s. This is especially true if she was in a durable remission before going away to school and continues to adhere with her treatment plan while at school. In addition to diet, there are other factors to consider here as potentially playing a role in her symptoms. How well is she dealing with the change and adapting to leaving home? College is notorious for a change in sleep habits and such changes have been shown to adversely affect our GI tracts and lead to symptoms. There may be dietary factors even beyond rice and her knowing her own body and what is agreeing with her is the best way to figure this out. During times when your daughter is experiencing GI symptoms it may be necessary for your daughter to eliminate rice for a few days and reintroduce it to see if it is truly a problem. Finally, this indeed could be from an increase in her disease activity and if her symptoms persist or advance, it would be wise for her to contact her IBD team to make a plan on how to evaluate for this and treat accordingly
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I have had Crohn's Disease for five years and been on Remicade for 4 years. My treatment is going well. However I have gurgle sounds from my stomach after eating meals. Sometimes the sounds are quiet other times very loud. My MRI showed that everything looked normal and there were no narrow areas. Can this be related to CD? What can cause this gurgling sound and how can it be stopped?
A: It is very good that you already had the MRI. This test is recommended for IBD patients over CT scans to decide if there are strictures as there is no radiation involved. Sometimes you need a dedicated MR Enterography rather than a regular MRI to answer this question. Provided that there is really no stricture, you could have small bowel bacterial overgrowth, which is an imbalance in the bacterial flora of your small bowel, typically related to surgery but also possibly caused by diabetes, thyroid problems, or aging. There is a simple breath test you could do to decide if you have this condition and the treatment is 2 week course of antibiotics. Other possibilities for gurgling could be malabsorption of a specific component of your diet, such as dairy or fiber. You can consider limiting these two components from your diet and see if the gurgling improves.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
October 2015
Q: I have both Crohns and Candidiasis. The diets for each seem to be mutually exclusive. I've been eating the same few foods for two years and am going nuts. What can I eat?
A: I find that diet is such an individual topic that can not be generalized to groups of people. There is no diet identified that clearly causes or treats Crohn’s disease when studied in groups of patients. I would recommend that you avoid foods that give you symptoms. It sounds easy, but can be challenging to try to identify trigger foods. Adding foods back one at a time is the best strategy. A food diary can often be helpful as well. The CCFA has published a patient handout to help give advice (http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf) and you may find it beneficial to meet with a registered dietician to help customize your diet.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I am taking humira but my insurance will stop in Oct what can I do?
A: Talk with your doctor! It will also be helpful to talk with your contact at the drug company. Some people are connected with a Humira Nurse that assists them. There are programs available through the drug company to help people with low cost or no cost medications based on need. There may also be other programs in your area that your care provider is aware of to help during this time.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have been having unbearable right side pain the past few months. My doctor did an MRE and said there was scar tissue in the Ileum. I also had another colonoscopy and then the next day was my remicade infusion. For 10 days since then I have been running a temp between 99 & 101, a severe headache & side pain. They did a ct scan and ruled ruptures and infection. Are these typical symptoms following a colonoscopy? What is the treatment?
A: These are not common symptoms after a colonoscopy. Because you are on Remicade, I would recommend being evaluated for sources of infection if you are having a fever. The treatment would become more clear once your care provider finds the source for the problem.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: Are there specific tests that identify TNF as the source of active ulcerative colitis inflammation, or are biologics just automatically tried if immunomodulator doesn't induce remission? I have mild to moderate kidney dysfunction and a family history of lupus. The prospect of starting Humira scares me, especially since I work in a public setting where exposure to infection is constant.
A: In clinical practice, there are not TNF tests available. Because of studies showing that a significant percent of people with ulcerative colitis have a good response (and a higher percent than respond to immunomodulators), they are frequently used when immunomodulators are not helping. All of these medications do carry risks that should be considered, but often the benefit of controlling difficult to manage ulcerative colitis outweighs those benefits.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: My son with Crohn's is on Remicade. He is in college and trying to arrange a semester abroad in Tokyo, Japan. How can we find out if Remicade is even available in Japan? We have tried speaking to pharmaceutical company that makes the medication but to no avail.
A: Remicade is available in Japan. It would require careful planning, but travel abroad can be accomplished successfully. Your son would need to quickly establish care with a GI provider in Japan who would be able to provide the Remicade while he is abroad. His care provider here may be able to help find a hospital or provider that would be appropriate.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have Crohn’s. I am also taking chemotherapy for uterine cancer and it causes severe diarrhea. I plan to take a combination of Questran (cholestrymine ) and Imodium during the next round of chemo. Lomotil no longer works for me. What other diarrhea control products are available?
A: Diarrhea due to chemotherapy can be challenging to manage, especially when you also have Crohn’s disease. Your plan of Immodium and cholestyramine sounds like a good next step. There is a stronger medication that can help to slow diarrhea, but it is a narcotic medication. If the maximum doses of Immodium and cholestyramine are not effective, you would need to talk to your care providers about the downsides of other options and whether it would be appropriate to try a stronger medication during this time.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have severe Crohn's. I am on Pentasa 4,000mg/day, Purinethol 50mg/day, Prednisone 20mg/day and just had my 3rd Remicade infusion and I am seeing no relief. I am very concerned about the Remicade and Purinethol treatments as I am seeing no benefits. I am also experiencing side effects from the Remicade that concern me. After each treatment I experience confusion, a drastic drop in blood pressure, trouble focusing the eyes and flushing in the face, should this treatment be discontinued?
A: It sounds like you are really struggling to get your Crohn’s disease under control. I would recommend that you meet with your doctor to review your response to the medications and any side effects that you are having. I can not say whether the treatments should be stopped without seeing you, but your care provider should be able to provide that guidance. I try to give Remicade around 12 weeks to see if it is effective. I then use symptoms and other tests (sometimes labs, imaging, or endoscopy depending on the patient) to help make this decision.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have CD for 21 years. I am currently on 6mp 50 daily (I cannot tolerate higher dose, it affects my liver) and 1.2 Lialda 4 daily and once again in a flare up. I have tried Humira and Remicade. I have been on prednisone many times in the past and will not go back on. I've also taken Entocort and meslamine. What are your thoughts on Ustekinumab?
A: Ustekinumab is a medication currently used for psoriasis that works by blocking inflammatory proteins called interleukins. There are early studies showing promise in the treatment of Crohn’s disease. Because it does not block TNF, it offers a new mechanism for treating Crohn’s and may be a good option for patients in whom Remicade and Humira have had no effect. It is not yet FDA approved for Crohn’s disease. On an individual basis, it might be the best next treatment for certain patients. Your care provider would need to help you make this decision and see whether insurance coverage would be possible for your individual case.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I just read that Humira has a success rate being 50-60% in mild to moderate cases of Colitis & Crohn's. What is the success rate of Remicade for severe cases of Crohn's? Given the side effects I am having I am considering going off treatment, but I am concerned as I am told that if I need to go back on it, it may not work because the body builds up antibodies against the drug.
A: In patients newly diagnosed with moderate to severe Crohn’s disease, combination therapy with Remicade plus immunomodulator has about 56% chance of steroid free remission at 26 weeks and Remicade alone has about 45% likelihood of steroid-free remission at 26 weeks. This study is not looking at patients who stopped therapy. Stopping therapy does increase the chance of anti-drug antibodies and loss of effectiveness in the future. I would recommend an honest discussion with your care provider before stopping any therapy.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I am currently on Lialda, Canasa, 6-MP, Simponi, levsinex, VSL#3 and miralax. I’m allergic to Remicade and after a year humira didn't help anymore. My stool is mostly formed but the issue is mucous and blood leakage especially when passing gas and before each BM. I’m trying non RX such as l-glutamine and amp floracel. Are there other treatment alternative options?
A: Curcumin has had some evidence showing benefit for mild symptoms. There are other alternative therapies that you will read about on the internet, but they do not have traditional evidence showing benefit in inflammatory bowel disease. That does not mean that they don’t work, but we just do not know enough about them to be able to recommend them at this point. I always recommend keeping your provider involved so that they are aware of everything that you are taking (even supplements). In addition, it is possible that your symptoms are mostly rectal and a topical mesalamine suppository or enema could be helpful.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
September 2015
Q: What can be done for chronic pain caused by abdominal adhesions brought on from many surgeries for Crohn's Disease
A: Every surgery creates new scar tissue, or “adhesions”. In general, surgeons try not to operate to relieve abdominal pain thought to be caused by adhesions unless there are associated symptoms such as intestinal blockage or obstruction. A thorough evaluation should be performed prior to any planned surgery to rule out causes of pain due to other factors. An Upper GI/ Small Bowel Follow Through study is a radiographic study where one drinks contrast and then multiple X-rays of the abdomen are taken to evaluate kinks or twists in the bowel. If these are found, a patient may benefit from surgery and lysis of adhesions. If contrast flows through the intestines without delay, surgery will not likely help the patient. An interventional procedure called a splanchnicectomy can be performed to deaden the intra-abdominal nerves by injecting the nerves with alcohol. This procedure can be done operatively or by interventional radiology, but is used rarely. Medical management of pain might best be treated by a Pain Specialist who can combine medical and complimentary alternative medical strategies to relieve pain.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2015
Q: What are good ways to handle the mental aspects of the disease? How to reduce worry, which cause flares for me?
A: The first way to handle anxiety and worry about IBD is to get educated about your disease. Knowledge is power. A good source of education is the CCFA which has a number of books concerning medications and natural history of IBD. Dr. Sunanda Kane has published an excellent book thru the AGA on “Living with IBD.” This is available at www.amazon.com . Finally, recent articles have emphasized that stress and anxiety as well as sleep deprivation can cause flare of IBD. Recently we have started referring patients to psychologists for Cognitive Behavior Training (CBT) and instruction with coping skills and stress management. Most important is having a doctor whom you trust and who you can share decision making with.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I was recently diagnosed with UC after an emergency room visit. I feel like the hospital just told me the diagnosis and sent me away. I have so many questions! Will I have to have regular colonoscopies? Will I need to change my diet? What are my next steps?
A: I suggest that you join the CCFA and go online to review two sections on the “Newly Diagnosed” website: About IBD and Monitoring Your Disease: http://www.ccfa.org/what-are-crohns-and-colitis/newly-diagnosed.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am newly diagnosed with Crohn's after 20 years of symptoms. I also had diabetes for 20 years now I am experiencing a major Crohn's flare. I am insulin dependent (I have been able to limit/control both in the past). What can be done to manage sugar levels with my Crohn's meds? Can Crohn’s and diabetes be related?
A: Crohn’s and diabetes are not related, but both are common conditions, so there are many patients who will have both conditions. Good control of Crohn’s disease and in particular avoiding frequently or long term treatment with steroids is important. Aim of treatment for Crohn’s disease is “steroid free remission.” Good control of blood sugars will require a strict, healthy low glycemic diet and regular exercise. If blood sugars become suddenly difficult to control, suspect a complication of the Crohn’s disease (i.e.: infection, fistulae, or flare).
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am a 35 year old male and my doctor is suggesting that I begin 6MP and Remicade treatment for Crohn’s. My wife and I are trying to start a family and I am concerned about the side effects of the medicine as it relates to infertility and birth defects. What medications should be avoided?
A: The only medications to be avoided are Methotrexate in young female patients of childbearing age and Flagyl. Many studies have shown that 6MP and anti-TNF agents do not lead to birth defects or infertility and are safe before and through pregnancy. There is an incidence of pre-term birth and low birth weight associated with Crohn’s disease itself. Best time to conceive is when disease is in remission. The biggest mistake is stopping medication which results in a flare of IBD and impaired health of the mother. Remember, healthy moms have healthy babies; and sick moms have sick babies. Men can use Methotrexate before conception with no problem of fetal abnormality or infertility.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: My GI is trying me on Lialda. I took it for a month no real problems. I woke up with severe back pain 5 days ago, also bloated, and sick. I stopped the Lialda and back pain subsided. Started taking again to control bloating and the back is in pain started again. Could these symptoms be side effects of the medication?
A: Lialda is a safe medication. It is unlikely a cause of back pain and bloating. Lialda is not indicated for bloating, but for the treatment of IBD. I would suggest checking biomarkers (CRP and fecal calprotectin) to see if your symptoms are due to a flare of IBD. Rarely, 5-ASA drugs (such as Lialda) can cause a worsening of IBD symptoms because of an “allergy.”
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am 63 and have Crohn’s Disease. I had one blockage about three years ago and I have a bladder infection almost monthly. I am on Lialda and have also been on Entocort. Now my doctor wants to try me on Humira. With so many bladder infections, would taking Humira make it worse?
A: First need to determine the cause of frequent infections. Is it related to a complication of IBD? If so, then Humira is probably indicated to control IBD. Humira can cause reactivation of disease (TBC, Histoplasmosis, CMV, etc.) but does not cause serious infections. Humira should not make it worse, and in fact, may make it better.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I was diagnosed with Crohn’s approximately ten years ago. Pentasa worked very well for me for nine years. The past six months I have been on Lialda without success. My doctor is suggesting Humira or Remicade infusions. I am very concerned about the side effects of both meds. How do I decide which drug to try first?
A: Both medications are anti-TNF biologicals with similar mode of action. Both have the same effect in producing response and remission (60% for both, 30% long-term remission for both). Infliximab (Remicade) is given IV at 0, 2, and 6 weeks, then every 8 weeks. Humira is given at 0, 2, and 4 weeks and self-administered subcutaneously with a shot every 2 weeks. Some physicians feel that Infliximab works better for Ulcerative Colitis than Humira. In final analysis, the choice is up to what the insurance company or HMO will allow. Both drugs have the same adverse events.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: My state has not approved medical marijuana. Would Marinol (Dronabinol) be a good alternative to help with increasing the appetite of cd patients? What are the risks and benefits of this medication?
A: There are more risks than benefits. Marinol has been used to stimulate appetite and prophylactically to prevent nausea and vomiting in cancer patients on chemotherapy. There are multiple psychiatric and gastrointestinal adverse events as well as cardiac side effects secondary to sympathetic stimulation. It is not FDA-approved for IBD.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2015
Q: I recently started taking Uceris for lymphocytic colitis. I am frequently nauseous and can’t eat. Could this be a medication side effect?
A: While possible, this is not a frequent adverse event with Uceris and is probably an unlikely cause of your problems.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: It is difficult to pass gas and hard to move my bowels. Is Benefiber good to take for constipation?
A: Fiber is good for constipation, if the cause of constipation is insufficient fiber in the diet (the dietary requirement for men is 35 grams daily and for ladies is 25 grams daily). Other choices may be stool softeners or stimulants. It is worth trying Benefiber with increased fluids with or without stool softeners.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2015
Q: Sometimes I have stomach aches when I eat gluten and sometimes I don't. So, is it a good idea to go gluten free if you have Crohn's disease?
A: This is a very good question. While there are people in the general population that might have a gluten intolerance and not a true gluten-sensitive enteropathy which represents a condition called Celiac disease and can lead to small bowel inflammation and malabsorption. Gluten is a protein that is found in wheat, barley and rye. People have reported increased symptoms with gluten intake including gas/bloating/diarrhea/nausea, but that doesn’t mean their Crohn’s disease activity is affected by gluten intake. There are no studies to date that show that a low gluten/gluten-free diet leads to improvement in inflammation or healing of Crohn’s disease, even if it does make some patients feel better. Celiac disease (gluten-sensitive enteropathy) is more common in patients with Crohn’s disease than the general population and can be evaluated by your provider if appropriate. The CCFA has some information about diet and nutrition on their website that you can find here: http://www.ccfa.org/resources/diet-and-nutrition.html
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Is there much literature regarding Crohn's and chronic Lyme disease (also known as MSIDS)?
A: To my knowledge there is nothing in the literature linking Crohn’s disease to chronic Lyme disease or Multi-system Infectious Disease Syndrome (MSIDS). There is a great website to search the medical literature using key terms if you had further questions about what has been published on either condition, it is PubMed www.pubmed.com and is available to everyone.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Is it possible to have Crohn's when literally every test has been negative including multiple biopsies? I have all the symptoms of Crohn's
A: It is hard to say without knowing that evaluation you have had and what has come up negative. But if you have had a thorough evaluation including assessment of your small bowel and there have not been any changes to suggest Crohn’s disease then it is unlikely that active Crohn’s disease is causing some of your symptoms. We often think that if Crohn’s disease is causing significant abdominal symptoms that we shouldn’t have to look that hard to find the disease, severe symptoms. If you have any questions about your symptoms or your diagnosis, it might be helpful to seek a second opinion with any of the IBD providers listed on www.ccfa.org
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: My knees have started with tightness in the back and then swell up all around knee caps to the point of no weight barring. Back and forth and sometimes both. Doc said it may all be tied in to my CD. I am about to start Remicade hoping it will calm things down. Are problems with the knees a common CD symptom?
A: Extra-intestinal manifestations of Crohn’s disease are actually quite common. One of the most common manifestations is related to joint pain and/or swelling called peripheral arthritis. In some patients their joint symptoms parrellel their bowel symptoms (when their bowel disease is active they notice that their joint symptoms are most active) and this can often improve with treatment of underlying bowel inflammation. Less common is a type of inflammation of the joints that happens independently of bowel inflammation (no bowel symptoms but have joint symptoms) but is less likely to involve larger joints like the knees. It is also possible that people can have joint symptoms are not related to their Crohn’s disease and could represent a primary rheumatologic condition. If your physician has decided to start Remicade and you have improvement in your joint symptoms that would be great.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Given the national shortage of methylene blue and indigo carmine what are your centers using for chromoendoscopy?
A: While there have been several reports of a national shortage of indigo carmine, I have not heard of a shortage of methylene blue. I have asked around at several IBD centers in the area and have not heard of anyone being impacted by the shortage and not being able to obtain either product.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: What is ischemic colitis?
A: Ischemic colitis refers to inflammation of the colon (colitis) due to low blood supply to the colon. Although the disease is not common, it is more likely to be seen in older individuals and can manifest as symptoms of abdominal pain, diarrhea, rectal bleeding. There are a variety of conditions that can result in ischemic colitis, the most common being low blood flow due to low systemic blood pressure or local factors effecting blood flow like constriction of blood vessels or blood clot, but often a cause can’t be identified.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I have had active moderate UC for three years, in constant flare with only one remission period when I took a very intensive dose of prednisone for several months, but once I began tapering off of it the remission ended and the side effects were terrible. My doctor said that if the current course of medications doesn't work, I should either go back on prednisone or to Humira or Remiicade. What are the risks and potential rewards of going on prednisone versus a biologic?
A: This is a very good question and without fully understanding the medications you are currently on I will do my best to answer your question. We define remission as a steroid-free remission, meaning that you feel well for at least 3 months off steroids. While steroids have a role in helping us get some patient’s into remission (also known as induction), we also have other medications that are safer than using chronic steroids that have been approved and are effective in inducing remission, some that you mentioned being adalimumab (Humira) and infliximab (Remicade). In fact, these agents are ideal in someone that has required multiple courses of steroids as you are less likely to be able to maintain a steroid free remission without escalation of your therapy. Additionally, while steroids can help people get into remission, they should not be used long term due to side effects, some of which I am sure you have experienced, but others include risk for bone loss, vision changes and most importantly the highest risk for infection complications with long-term use. The anti-TNF based therapies (as you had mentioned) have been approved for both induction of remission and maintenance of remission, which means we can get people feeling well without steroids and keep them off steroids as we “maintain remission”. Biologic based therapies are safe and effective in the management of ulcerative colitis and this has been shown in several studies. We know that chronic exposure to steroids can be associated with worse outcomes for our patients, which of course we would like to avoid.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I have active Crohns and being treated with Humira. I had gallbladder surgery 4 years ago. Since the gallbladder surgery diarrhea worsened and finally bile salt found to be culprit. I'm controlling it with Welchol with meals and Caltrate at night. Is this a common problem for Crohns patients with gallbladder surgery? It took 4 years to get to the bile salt diarrhea because of the active Crohns, previous intestine surgery, etc.
A: Bile acid malabsorption which can present as diarrhea is due to the presence of excess bile acids (or bile salts) in the colon, which leads to stimulation of electrolyte/water secretion, decreased colon transit time and patients will experience diarrhea. There are several conditions that can lead to bile acid malabsorption, one like you mentioned is Crohn’s disease. Patients with Crohn’s disease involving the last part of their small bowel (terminal ileum) are at risk because bile acids are typically absorbed in terminal ileum. This includes patients with active disease, chronic disease and those who have had surgery of this area. In addition patients who have undergone cholecystectomy can also develop bile acid malabsorption that can lead to this same phenomenon. The treatment for patients is to use bile acid binding agents, like cholesevelam HCL (Welchol), which you are on.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: My 16 yr old daughter has IBS. But I think its Crohn's. She had one hospitalization (they could find nothing). She has been off and on "better", but randomly for the last couple of weeks very sick. She has lost weight and is so thin that I'm worried about that as another issue. (5'6" and maybe 100lbs). She is so tired and is getting depressed because it really seems as if our health plan has decided there's nothing wrong. We have a peds GI. What else should we do to find out what is wrong?
A: I am sorry to hear your daughter is having these problems. It is great that you already have a pediatric gastroenterologist your daughter is seeing. I would continue to discuss with your physician your daughter’s specific symptoms and ask for their recommendations. If you are not comfortable with your current physician, seeking a second opinion is also always an option. You mentioned your daughter is becoming depressed, so please seek treatment for her with your primary care physician or a psychologist, as it could also be impacting her symptoms. If she has any thoughts of self-harm then that is a medical emergency and would need to be seen in an emergency room.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I am 16 years old and have had Crohn's disease for 3 years. I lost some weight but gained it all back. I’m on a low residue diet. It is hard to stay healthy and keep my weight the same. I can't have fruits or vegetables. The vegetables have to be cooked but I don't like vegetables anyways. But I do like fruit. Not being able to eat healthy things has made me gain so much weight and I'm starting to feel insecure. I don't know what to do to get my weight down. Do you have any suggestions?
A: First, I commend you for your desire to be healthy and maintain a healthy weight. I would recommend speaking with your gastroenterologist about your concerns and ask if you can be referred to a Registered Dietitian. A dietitian can help you develop a plan for a healthy diet within your specific dietary requirements.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: It's been five weeks since my resection and I'm still so very tired. Is this normal? Also I am depressed and it seems to be getting worse every day. Finding this out at age 59 that I have Crohn’s is just so hard to accept.
A: a. You should be feeling more energy by this time after a resection, especially if the resection removed active Crohn’s disease. You should let your GI doctor know how your are doing, perhaps you should be checked for anemia. Did you taper off steroids recently (such as prednisone)?. Sometimes the body becomes dependent on steroids. If you are not having abdominal pain, fevers or vomiting it is unlikely there is a complication from the surgery. You should also see your primary care doctor about the depression. Major surgery and a new diagnosis of Crohn’s must be quite overwhelming. That may be a major factor here. Your primary doctor can also check for other problems such as thyroid disorders. Bottom line – connect with your GI doctor and primary doctor about your symptoms.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I have ulcerative colitis. Is it safe to take food grade diatomaceous earth? And if it is safe, can it be ingested it when actively bleeding?
A: There is no substantiated benefit from ingesting diatomaceous earth. Silica can be toxic. Its use is not recommended.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I have traveled to 15 countries in the last five years and the only two times I have had a flare up is when I've visited countries where I have to drink bottled water. Could changing your diet for ten days to an acid diet cause a flare up? I normally drink tap water at home which is ph7, most bottle waters are acid.
A: The stomach is normally very acidic (less than pH 3.5) so subtle differences in drinking water pH should be of no consequence.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I was recently diagnosed with mild distal ulcerative proctitis. I'm 44 years old and I am concerned about the risk of it spreading to other parts of my GI. I can't seem to find any consistent stats on that risk of it spreading. What does the latest research show? And, is it possible for it to go away completely?
A: a. There is a chance that the colitis could spread higher up in the colon. The chance of that over the next several years is probably between 10 and 30%. The inflammation will not spread to other parts of the GI tract. If inflammation does turn up in the small intestine or stomach then a diagnosis of Crohn’s disease needs to be considered. b. The proctitis is unlikely to go way completely, but proctitis sometimes seems to have longer periods of inactivity, without need for medicine, than more extensive colitis
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I was diagnosed with CD 28 yrs. ago. Nine years ago I had a resection of my small intestine at the illiim w/ a dx of cancer followed by chemo treatments. Six years ago, I had colon cancer followed by chemo treatments. Both cancers were found by colonoscopies. I understand the 10 year colonoscopy rule for colon cancer, but my concern is w/ my crohn's which is in my illium (came back) & in my duodenum. How often should I be screened for both these sections & what is the preferred screening
A: There is no absolute guideline for this situation. It is almost certain your doctor will not allow you to go 10 years between colonoscopies. Exactly how often colonoscopy should be done will depend on details such as the activity of your Crohn’s. b. As you know, colonoscopy can only see a very small part of the small intestine. Surveillance to prevent small intestine cancer is typically not done because small intestine cancer is much, much less common than colon cancer Your case is difference, however. Discuss this with your doctor. There are different ways to monitor the small intestine including a video capsule device, MR scan or CT scan.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: Would you say that you are in actual remission when you are still having a lot of bleeding every time you go to the bathroom and/or still having horrible joint pain?
A: These symptoms sound like your inflammatory bowel disease may not be in remission. There could be other causes of the bleeding and joint pains, such as hemorrhoids and primary joint disease, but this needs to be discussed with your GI doctor and/or primary doctor.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I am 52 years old and was recently diagnosed with mild Crohn's Disease. I have had little to no symptoms up to this point. My GI is recommending no treatment or dietary changes, and follow up in one year (from my original colonoscopy). Is this the standard protocol for someone newly diagnosed with mild disease?
A: a. With very mild disease this may be acceptable, but generally only with very mild disease because Crohn’s treatment works best when started early. It sounds like your doctor is, appropriately , planning to keep a close eye on your Crohn’s and will start treatment if any worsening. b. There are no established specific dietary treatments for Crohn’s disease. Dietary recommendations may vary depending on the nature/behavior of an individual’s Crohn’s.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2015
Q: Can a colectomy be performed without ever having to have a bag? I read online and my GI doctor told me that if my intestine is healthy, they can connect the small intestine and anus in one surgery without having to wear temporary colostomy bag?
A: Whether or not to create a temporary ostomy depends on many factors- the type of surgery to be performed, the nutritional status of the patient, whether or not the patient smokes, and whether or not the patient's immune system is compromised due to steroids or other medications. For surgery where the anastomosis (where the bowel is reconnected) is very low in the pelvis, the risk of leak is much higher and most surgeons will perform a temporary ostomy to allow the anastomosis to heal. After 8-12 weeks, after the patient has been allowed to heal, weaned off steroids or become nutritionally better, the ostomy is usually reversed at a second operation. For patients who smoke, are anemic, obese, malnourished or are on steroids, most surgeons would perform a temporary ostomy as these factors all increase the risk of leak. The reason a leak is bad is that stool will leak into the abdominal cavity from inside the intestines. That is a potentially life-threatening condition and usually emergency surgery is performed to wash out the infection and create an ostomy. The bottom line is that the surgeon takes into account all of these factors to decide whether an ostomy will be necessary.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2015
Q: I have moderate pericardial effusion after using Delzicol for two months. Is this a common side effect?
A: The mesalamine products like Delzicol, are used to treat inflammation. Ironically, some of the side effects are inflammation in other organs. For example, we monitor kidney function regularly for something called “interstitial nephritis,” inflammation of the kidneys. There are rare occurrences of other side effects with these medications like pancreatitis and pericarditis. This inflammation around the heart can be seen in about 0.5% of individuals on these medications and can rarely cause an effusion from the leaking of fluids across this inflamed heart tissue. I have never seen this and it is rare. I recommend seeing Cardiologist, trying to stop the Delzicol and see if the pericardial effusion improves.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: I recently started Humira. I am now reading that weight gain might be a side effect and I am very concerned. What is the success rate with this drug? What percentages of patients gain excess weight? I expect some change, but will not continue the drug if I gain a significant amount of weight - It seems like I'd be trading one health risk for others.
A: Weight gain is more of a concern with steroids like prednisone. Humira and medications like this can cause swelling in the legs, but this is a rare occurrence. Usually patients are taking Humira along with steroids initially. The success rate of this drug is about 50-60% in mild to moderate ulcerative colitis and Crohn’s, increased when adding an immunomodulator like 6-MP, azathioprine or methotrexate. We define “success” differently depending on the study but these numbers reflect how likely you will feel better and clinically do better. Less than 5% of the patients gain weight on this product alone. I recommend trying the Humira if recommended then seeing if you gain wait.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2015
Q: My doctor recently put me on Humira. I’ve had three injections so far. I have been on 6MP for about 4 months. My doctor assures me it is safe to take both, but everything I have read says otherwise. What are the risks of taking both medications together?
A: The main risks of taking two immunosuppressants together like Humira and 6MP are infection and cancer. Please make sure you are up to date with vaccinations including flu, pneumonia and hepatitis B. Live vaccines are not recommended while on both these medications. In terms of cancer, the main one we are concerned about is lymphoma. There is also risk of skin cancers so please make sure you see dermatologist annually. In terms of lymphoma, the risk for lymphoma in the general population is 2:10,000. When someone takes 6MP, it increases to 4:10,000. Combination therapy increases this risk to 6-8:10,000. If you are a young male, you have a slightly higher risk of another form of lymphoma called “hepatosplenic T cell lymphoma.” More recent studies looking at over 6,000 patients on these medications reveal that most of the risk for lymphoma comes from the 6MP and not as much from the Humira. New studies also reveal that patients usually need to be on these medications for at least 2 years to have this risk of lymphoma. In my practice and in some others, we use combination therapy then consider stopping the 6MP in 6-12 months for this reason. Another option for young males is to use Humira with low dose methotrexate. Methotrexate cannot be used safely in young females considering pregnancy.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: I have left sided ulcerative colitis. Many times I feel tired and rundown if I do anything physical. I am not sure how long I can keep working. I am 35 years old. Would it be a good idea to get the diseased part of my colon removed now? Will removing the disease part reduce the chances of it spreading? Will having this procedure sooner rather than later lead to a better quality of life?
A: Make sure you have your vitamin D and iron levels checked regularly because this can cause fatigue. I would also make sure you are on the appropriate medications to cause healing on colonoscopy. With the proper medications you should be able to live a relatively normal life. Some patients do still have the fatigue you mention, even when they have no vitamin deficiencies and have well-controlled colitis. If fatigue is the only symptom, having a surgery will likely not help with this. I would recommend also seeing a nutritionist to modify the diet if necessary.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: Is there is any new research into the use of suboxone in the treatment of Crohn’s?
A: I am not familiar with any substantial study looking at this product for Crohn’s. If you are interested in participating in clinical trials for new therapies, please go to www.clinicaltrials.gov for ongoing trials. I could not find any ongoing trials for this at this time.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: My 15 year old daughter is about to start 6mp for Crohn’s disease. I want to know if it is ok for her to take it at night before bed. This is when her stomach is most empty and I understand it is supposed to be given on an empty stomach. Are there side effects that I might miss if she is sleeping after she takes it?
A: 6MP does not need to be taking on an empty stomach but doing so may reduce the risk of nausea and vomiting – however, this side effect is very uncommon in the doses used for Crohn’s disease. It can be taken any time during the day. Many patients take it in the morning because they are less likely to forget to take it but if your daughter has a routine to take medications at bedtime it is also acceptable to take it then. It is unlikely that there would be side effects that would be missed while sleeping.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
July 2015
Q: I am 15 years post IPAA surgery and have developed iritis. I am told that it is an extra intestinal manifestation of UC. Is there any information available about these or other symptoms developing after colectomy? Also what type of specialist should I consult to deal with the systemic part of UC, as my GI feels only qualified to treat the digestive system? I of course also have an eye specialist, but it seems like there should be someone coordinating the treatment of the overall disease
A: There are reports of iritis occurring after IPAA surgery for UC but this not commonly. Iritis can occur with other medical conditions than UC so the eye doctor in collaboration with the primary care provider can decide on any further appropriate evaluation. If you are not having any gastrointestinal symptoms with the iritis, then the eye specialist (such as an ophthalmologist) is an appropriate person to address this issue. Otherwise, unless there are other symptoms after the IPAA for UC, you do not necessarily need another provider to manage your case.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I had a colonoscopy today my doctor said my Crohn's is in remission. However 3 weeks ago I had imaging test and it showed active disease. I'm confused . I had Crohn’s for 30 years and never been in remission and I don't feel any different. What are the definitions for remission and active disease?
A: Thank you for your question. This is a question that comes up often in different forms. Active disease refers to ongoing active inflammation of the intestinal lining, which can be detected by labs, imaging, and/or colonoscopic evaluation. These diagnostic tools often agree with one another but not always, and if the location of active disease is accessible by colonoscopy (i.e., in the colon or terminal ileum), this tool remains the gold standard for evaluation. Ideally, the definition of remission in Crohn’s disease is the combination of no active intestinal inflammation and an absence of disease-related symptoms. However, because symptoms associated with Crohn’s are also present in other
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Is the IgA and IGa test a good way to diagnosis Crohn’s disease, when all other tests were negative for IBD?
A: Immunoglobulins or Ig are not typically used in the diagnosis of Crohn’s disease. The three scenarios that this test may come up in the evaluation for IBD are: 1) Evaluation for celiac disease, which is associated with IBD, as celiac disease and IBD can have overlapping symptoms 2) Evaluation for common variable immune deficiency (CVID) which can have overlapping symptoms with IBD 3) As part of an antibody panel used by many providers (aka as the IBD-7 panel). These panels can include antibodies like ASCA, ANCA, Anti-ompC, etc, and are often associated with IgA or IgG. This antibody panel is rarely helpful for a diagnosis of IBD, especially when used alone. IBD is typically diagnosed based on a combination of clinical symptoms and history, endoscopic evaluation (with biopsies if needed), imaging, and labs.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Crohn's Disease has been a part of my life since 1977. I have had a total colectomy with rectum removal and of course ileostomy. I am currently on no meds except b12 every other month. What is the likely hood that the disease will return? Is there any research on this?
A: Great question. There is some research on this topic but it depends on a couple different things. If before your total colectomy and end-ileostomy your disease was isolated to your colon, then the risk of recurrence with an end-ileostomy is low, about 10-20% over 5 years. If before surgery, the colon inflammation was associated with small bowel inflammation or inflammation around the anal area (i.e., abscesses or fistulas), the risk of Crohn’s disease recurrence would be higher.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My 18 year old daughter just had a third major flare and is on prednisone again. We are now facing a decision about maintenance with either Humira or Remicade. Both have some serious warnings, but both seem to be discussed as being quite effective. What advantage is there one over the other for a young adult who is college bound? Would it be impractical to schedule infusions when at college or are they available at most hospitals? What are the pro/cons for either?
A: This is a common scenario. Humira and Remicade both have the same mechanism of action and in most people will have similar effects with little difference between the two. The major difference is that Humira is given as a shot (by injection or prefilled syringe) every 2 weeks while Remicade is given like an IV every 8 weeks. Remicade will require that a patient go to an infusion center for each dose. There are infusion centers in most mid-sized to large cities so it may be prudent to determine if there is one near her college. I would suggest that she establish with a gastroenterologist near her college as well
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s disease about 8 months ago and have been on Lialda but recently have not been doing well. I have lot medication side effects. Is there another drug that is similar that may provide me with less side effects? I am still trying to understand how to control flare ups and wonder if there are any specific tips to help control the symptoms. I am working to limit my drinking and have actually just begun a gluten free diet to try to help.
A: Thank you for the questions. First, I would speak to your gastroenterologist regarding your symptoms and determine if they are due to the Crohn’s or something else. At this point, the two of you can also discuss potential adverse effects from the Lialda. There are other medications in the same family as Lialda and you and your gastroenterologist can discuss the most appropriate treatment plan. By “drinking,” I imagine you are referring to drinking alcohol. Limiting alcohol and a gluten free diet may help but no diet has yet been proven to decrease inflammation from Crohn’s disease that is causing symptoms. When patients have active intestinal inflammation, it may be helpful to decrease high fiber foods and perhaps dairy products and caffeine. I suggest using a food journal to recording food intake and symptoms to determine if certain foods trigger symptoms.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s in Nov 2014. I am on 200mg of 6mp per day. The doctor says I am in remission but I am having strong to almost severe muscle pain, weakness and fatigue. Can these symptoms be related to Crohn’s Disease?
A: Thank you for your question. The symptoms that you describe are not specific to Crohn’s disease and can be seen with many other disease processes and medications. If a thorough evaluation that may include some combination of endoscopic evaluation (i.e., colonoscopy), imaging, and labs has been done to confirm Crohn’s disease remission, then it may be reasonable to evaluate if the dose of the 6-MP is appropriate. This can be done through lab work.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I have Crohn’s and currently on Entocort. Is Entocort a good option for lifetime care for Crohn’s?
A: Good question. Entocort has been studied in Crohn’s disease for up to one year but not beyond. According to these studies, it appears to be most effective within the first 3 months and less effective afterwards. However, some patients may do well on entocort beyond 3 months. The key is regular follow-up with a gastroenterologist with routine labs, colonoscopy, and perhaps imaging evaluating for active intestinal inflammation. During these evaluations, if there is any evidence of nonresponse to entocort or progression of inflammation, an adjustment to your therapy can be made early.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My rheumatologist's office nutritionist has put me on a 3 week course of rifaximin to treat SIBO (small intestine bacterial overgrowth) which she says is the source of my Crohn's and other autoimmune symptoms. She has also advised me to follow the strictest version of the FODMAPS diet with no grains for 3 months 'to kill off the bacteria'. I am worried about completely eliminating all my beneficial microflora by staying on this diet for so long. Any advice or experience with prolonged FODMAPS?
A: There is a lack of scientific evidence suggesting SIBO is the cause or source of all autoimmune symptoms. There is actually debate within the medical community as to whether SIBO is a problem. It’s a tough question, but since rifaximin is safe, most doctors will try it. Low FODMAPs diets don’t kill off bacteria. However, low FODMAPs diets may help some patients with symptoms of bloating, diarrhea, and cramping. You will likely not harm yourself with a prolonged low FODMAP diet, but it is not recommended being on this diet for a long time if it does not help you.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
May 2015
Q: My 29-year-old daughter ran a half marathon one and a half weeks ago. Since then she has had continuous bloody diarrhea. The GI dr plans on doing a colonoscopy. Is there any danger in doing a colonoscopy while she is still experiencing the body diarrhea?
A: No, a colonoscopy would be good to do carefully when someone is having a “flare” to determine whether she truly had a flare, or perhaps had colon ischemia, which happens in runners, when not enough blood flow gets to the intestines. The treatments are different.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: My son was diagnosed with crohns and not tested for cdiff. He has been treated first with asacol and then lialda and now on Remicade. Is it possible to have an accurate test for cdiff.?
A: Yes, the C diff should stay accurate if he has it, regardless of his medications.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I was diagnosed with diverticulitis when I went to the emergency room. About 6 months later I was in terrible pain on left side of stomach and bleeding again went back to emergency room where they ran some tests and told me I had colitis. I have been having these problems with my stomach on and off for about 4 years. Once you are told you have a colitis attack does that mean its forever?
A: “Colitis” is a general term to mean inflammation of the colon, which ER doctors will either tell you without a proper exam, or if they see inflammation in the colon on a CT scan. We get this with diverticulitis, food poisoning, infections, IBD, lots of things. So, I would see a GI doctor, as the ER and a CT scan is not a reliable way to diagnose ulcerative colitis or Crohn’s disease.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I have been having a lot of red blood in my stool for a week. I called my gi and they started me on prednisone. But I feel very tired, lower back cramps, headaches. I feel like I want to vomit and have lower abnormal cramps. Could I these symptoms be caused by the blood loss or a side effect of the medication.
A: Fatigue and cramps can be from having active inflammation in the colon, but all of those symptoms can also be from steroids. It really depends on your problem. Do you have Crohn’s or ulcerative colitis? If so, steroids are not a good long term solution anyway, and having these diseases be out of control will also cause all of the above symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: My husband was diagnosed with unspecified crohns/colitis. I asked the doctor what unspecified crohns/colitis means. He said that it was colitis of the entire colon. They did the camera pill thing last year and nothing showed up. What I don't understand is what is the difference between ulcerative colitis and "colitis"? Is there are difference. The doctor now says it is just colitis not crohns. Can you help me understand the diagnosis?
A: Generally speaking inflammatory bowel disease is divided into two categories, Crohn’s disease and ulcerative colitis. Crohn’s disease involve any part of your gut from mouth to anus with most common part being the end of small intestine and beginning of the large intestine. Ulcerative colitis, as the name implies, only involve the colon and rectum- your large intestine. Colitis simply means inflammation of the colon, just like arthritis means inflammation of the joint. Colitis can be caused by infections (infectious colitis), chronic inflammation (such as ulcerative colitis) and decreased blood supply (ischemic colitis). When Crohn’s disease involve colon, it’s called Crohn’s colitis. Most of the time physicians and pathologists can tell the difference between ulcerative colitis and Crohn’s colitis. In some instances, about 10-15 percent of the cases, it is difficult for the physicians to tell the difference between the two and they call it indeterminate colitis. We are learning more about this entity and its behavior and response to medications and long term prognosis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: How long do people with crohns generally stay on humira and can that lead to remission?
A: It is very hard to predict the response to anti tnf therapy in a particular patient. Our understanding of the influence of drug and its blood levels in our body system and loss of response is evolving and we are learning that good drug levels are associated with longer duration of remission. Many factors such as body weight, age, gender, smoking, and albumin level and disease burden influence the drug levels. In clinical trials it has been shown that if you respond to a drug there is a fair chance that you will keep responding to the drug for the next few years. Also remember, definition of remission is also evolving. Most physicians now believe that remission means not only the absence of symptoms but also reduction of inflammation and improvement of the inflammatory markers in the blood. All approved anti tnf drugs have shown to induce remission as long as you remain on the drug and the levels of the drug are adequate.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I was diagnosed with UC 2013. I am currently taking Apriso. The doctor has suggested Prednisone or Remicade. I am really scared to take any of these treatments after what I have read about the possible side effects. Are these the only treatment options?
A: There are several reasons for stepping up therapy in ulcerative colitis. For example, lack of response to current therapy, disease progression despite optimal treatment, side effects or intolerance to current therapy may warrant changing the existing therapy. The goals of therapy in ulcerative colitis are to help make you feel better with minimizing the symptoms and also improve inflammation in the colon. Persistent inflammation in the colon increases the risk of colon cancer and also increases the risk of disease progression with future flares and hospitalization. Once the mesalamine therapy ( such as Apriso) has been maximized and consideration to topical mesalamine therapy such as enema in combination therapy with oral pills has been given and your doctor has found that it’s time to move on to other therapies, different options such as immunomodulators ( azathioprine, 6MP) and biological therapies ( such as Infliximab, Adalimumab and Vedolizumab) are available. These therapies are associated with certain risks such as infections and cancers. The risk of infections warrant close monitoring while on the therapy. The absolute risk of cancers such as skin cancer and lymphoma is not high. You have to keep in mind that if left untreated, persistent inflammation also increases the risk of colon cancer and other complications in the intestine. In most of the situations, the benefits of therapy outweigh the risks associated with them. Alternatively, surgery to remove the colon is another option that you may discuss with the doctor. Prednisone therapy is only used as short term as a bridge to long term therapy. Of all the therapies, prednisone is associated with more risks of infections and other complications such as bone loss, skin, sleep and mood disorders.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: What maintenance drugs are recommended after small bowel resection surgery for Crohn's disease?
A: It is well established that Crohn’s disease recurs after the surgery in majority of the patients. There are certain factors that increase your risk of recurrence such as young age, female gender, smoking, long segment resection and history of prior resections. In patients with higher risk of recurrence, it is suggested to start the medical therapy soon after surgery. In clinical studies, anti- TNF therapy has been found to significantly decrease the risk of disease recurrence. Other immunosuppressive drugs such as azathioprine have also been found to be useful to prevent recurrence. In lower risk patients, physicians may elect to monitor them closely and start therapy at the earliest signs or symptoms of recurrence. This strategy may warrant close monitoring with repeat blood and stool tests and colonoscopy. Most of the clinical studies have found anti tnf therapy and immunomodulators to be effective drugs to prevent recurrence.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: My son is in a Crohn’s flare up. He has been taking Lialda, dicyclomine. He has been on Uceris for four days and still in pain and having bloody diarrhea. How long does Uceris usually take before the symptoms disappear?
A: Uceris is a delayed and extended release 9mg budesonide tablet that releases throughout the colon. It is used for mild-moderate ulcerative colitis. Budesonide is a topical glucocorticoid. In a Uceris clinical trial, it took up to 4 weeks for 47% of patients to show clinical improvement. Entocort is another formulation of budesonide that is released in the end of the small intestine and used for mild to moderate Crohn’s involving the end part of the small intestine for right portion of the colon.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: My son has suffered from chronic pouchitis for 18 mos. He would like to start taking probiotic. What is the success of probiotics? How long might it take to make a noticeable difference?
A: Probiotics may help reduce the risk of recurrence of pouchitis after treatment of pouchitis with antibiotics. The studies showing benefit used VSL#3, combination of several strains of probiotics, with dosing of 600 billion colony forming units a day to 900 billion colony forming units twice a day. Probiotics have not yet shown to be an effective treatment of pouchitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: After being diagnosed with cd 20 years ago I had 2 infusions of Remicade and then stopped the treatment. Recently I was hospitalized with ileitis. My Colonoscopy showed no signs of active disease but some scarring in small intestines. The CT showed no thickening of intestinal lining or active disease. The antibody tests for Remicade showed none. The GI wants to start me on Remicade. Since there is no active disease, is it possible to start on medications other than biologic therapy?
A: The key point is to determine if the symptoms that lead to your hospitalization were from active Crohn’s disease or something else. If you had active small bowel Crohn’s disease that caused moderate-severe symptoms then medical treatment with an immunomodulator (such as azathioprine/6mercaptopurine, methotrexate) or biologic would be indicated. 5-aminosalicylates have not been shown to stop the progression of small bowel crohn’s disease.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I have Crohn’s but recently been told I have a circumferential narrowing and constriction of my lower cecum. Is this a side effect or Crohn’s? Can this condition cause cancer? I stay bloated and hurt in my upper right side and my middle left side. The GI just keeps telling me it is from Crohn’s disease. How is this condition treated?
A: Since inflammation from Crohn’s disease can affect the full thickness of the intestine that it is located in, there is a predisposition for forming strictures or narrowing. Chronic inflammation involving the colon over many years (>8 years) can increase the risk for developing colon cancer. If you have had Crohn’s for a short period of time and have not started medical therapy, then therapy with medications would be attempted 1st as long as you do not have signs of obstruction or blockage (abdominal distention, vomiting) from the stricture. If you do have signs of obstruction and the Crohn’s is limited to a small area, then surgery may be considered as treatment.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I was diagnosed with Crohn's Disease when I was three years old. I went into remission after being on Sulfasalazine for nine years. I came out of remission my senior year of high school. It has been two years, and I have tried the sulfur pill, remicade, and entyvio. I have also tried gluten free, lactose free, and a cleanse. What other treatment options are available before resorting to surgery?
A: There are still several medical therapy options which include azathioprine or 6-mercaptopurine, methotrexate, adalimumab (Humira), certolizumab (Cimzia), natalizumab (Tysabri). Your gastroenterologist can help determine which medication or combinations of medications are right for you. Sometimes medical therapy and surgery are used together to improve quality of life.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I was diagnosed with UC in October of 2014. My GI started me on Lialda. I stayed on Lialda for 2 months with no change in symptoms (gas, constipation, bloody stool, urgency). At that point GI changed diagnosis to Crohns since I didn't respond to Lialda. I started Humira in January. I have had 2 normal days with no symptoms but all other days are same as when diagnosed, no improvements. Is this normal for Humira? When do I consider other options?
A: Not responding to Lialda® is not a reason to change your diagnosis from ulcerative colitis to Crohn’s disease. There must have been another reason for the diagnosis to have changed. It may take up to 12 weeks to see improvement with adalimumab (Humira) for the treatment of Crohn’s disease. If you have had only 2 normal days since starting Humira then it is not likely working. If your symptoms cycle around your injections, better the few days immediately after but then worsen, then your physician may consider checking Humira drug levels to see if a dose adjustment is needed. If it turns out you are not responding at all to Humira then I would recommend making sure there is not another reason other than Crohn’s for your symptoms such as infectious gastroenteritis from C. difficile infection or other infections prior to starting a new medical therapy for Crohn’s.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I just finished radiation treatment for breast cancer and now am being prescribed tamoxifen as an anti-estrogen therapy. Since my colitis flared up badly after surgery (lumpectomy) I am concerned if there are any contraindications against tamoxifen for patients who have ulcerative colitis.
A: There is no specific relationship between tamoxifen and ulcerative colitis. Of course, every person reacts to treatments differently but tamoxifen should be ok with your UC. There have been a number of hormone studies in IBD and while early data suggested a possible link with hormones and Crohn’s ds, the totality of the data and research since has not shown a link.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: My son 9 yrs old son has an abscess around his rectum. He is in the hospital and the doctors have done tests/scopes and are telling us that he has a mild case of Crohn’s Disease. He does not have any of the symptom's that are associated with Crohn’s now or in the past. The doctors have recommended Remicade. Can someone have Crohn’s without having other Crohn’s symptoms? Is remicade the most appropriate choice for mild disease?
A: It is possible to develop an abscess from a fistula and have this as the only manifestation of Crohn’s disease. However, a fistula that leads to an abscess does often have a component of bowel related inflammation, ie ulcers or inflammation in the rectum/colon or small bowel. If he does have evidence of active Crohn’s disease in the bowel and has an abscess from a fistula, then “yes” Remicade is a very appropriate treatment choice.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I am 29 years old and have been recently diagnosed with severe crohns in my small intestine and mild in sigmoid colon. The doctor prescribed remicade infusion every six weeks. I have not started the treatment yet. What is the lymphoma cancer risk using this medicine?
A: The lymphoma risk using remicade is very low and is estimated at 4-5 in 10,000. Many of these cancers also are early and treatable, responding well to treatment. As always, it is important to balance risks of remicade with potential benefits and risks of not doing remicade. In vast majority of patients, the risks with treatment are far outweighed by potential benefits or consequences of severe disease. It is important to remember that treating early on improves likelihood of response.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I’m 36 years old. I have Crohn’s Disease, no insurance and no job due to the severity of the disease. Where can I get help for treatment?
A: The Health Insurance Marketplace is a new way to find quality health coverage in one place. Within the Marketplace you can learn about your health insurance options, compare insurance plans and submit an application. Many people qualify for financial help from the government to help cover the cost of insurance. For more information about the Marketplace or to apply for coverage, visit: www.healthcare.gov . The deadline to sign up is Feb 15th. For free health care you can get services at community health centers. To find centers in your area visit: http://findahealthcenter.hrsa.gov/. Finally is you are unable to work because of your disease, you may be able to apply for social security disability benefits. Contact the Social Security Administration at www.ssa.gov .
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: What are the side effects of Prednisone? Do they include mood swings?
A: While prednisone is a good medication for short term use to induce a remission of inflammatory bowel disease, it is not a good long term medication because of its side effect profile. Prednisone can cause emotional instability, headaches, psychic derangements, high blood pressure, diabetes, liver function test abnormalities, problems with bone metabolism, to name a few.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I would like to know what the maximum dosage of balsalazide is. I see that some people take 12 pills a day, and I also saw on a hospital website that up to 6.75-13.50 gm/day can be taken. I am presently taking 12 pills because of a flare but doctor has only prescribed 9, but the 12 seems to help my symptoms.
A: The maximum dose evaluated in the clinical trials and the FDA approved balsalazide dose for mild to moderate ulcerative colitis is a total of 6.75g/day (9 pills a day). I would recommend you inform your physician as to the dose that you are taking which will help them find the most effective and safest treatment regimen for you.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Is it normal to have long, flat, stools that are very painful to pass and never feel like it's all come out? Even though I have only eaten one meal today, I feel extremely bloated and I didn't eat anything until 6pm because my stomach felt so full
A: If recurring, then I would recommend evaluation by your physician for inflammation and narrowing in the intestinal tract (rectum, anal canal, colon), as well as constipation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have been diagnosed with Drug Induced Lupus. I was on Humira for 5 years, suffered severe arthrpathy in every joint and tendon for 3 years. I am concerned that because the DIL was diagnosed so late it might develop into full blown Lupus. I stopped Humira 5 weeks ago and now on 10mgs steroids now. What are the risks of developing full blow Lupus?
A: The incidence of anti-TNF (medications such as adalimumab (Humira), infliximab (Remicade), certolizumab (Cimzia), and golimumab (Simponi) induced lupus is believed to be approximately 1%. Most cases of anti-TNF induced lupus are self-limited, 94% in one study, after withdrawal of the Anti-TNF. Treatment with corticosteroids and other immunosuppressants may be needed to help resolve symptoms. It is also hypothesized that patients that do not have self-limited disease may have had underlying lupus even prior to the anti-TNF. Reference: Ramos-Casal M et al. Autoimmune diseases induced by TNF-targedtd therapies. Analysisof 233 cases. Medicine 2007; 86:242-51.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have had an ileostomy for Crohn’s disease for 30 years. At the time of the surgery, my rectal stump was left. I have had several other surgeries since for endometriosis and have problems with adhesions. For the past 5 years, I have been well but surgeons want to remove my rectum because of the cancer risk. I have read conflicting statistics as to the cancer risk of rectal Crohn’s disease after 30 years. What is the risk of rectal cancer?
A: Any of the intestine affected by Crohn’s disease is at risk for developing Crohn’s disease, and out-of-circuit diseased rectum develops cancer in approximately 10% of cases after 15 years of follow-up. And, the longer the rectum remains in place, the greater is the risk for cancer. Accordingly, it is recommended that the unused rectum is inspected and biopsied every year to detect any precancerous or cancerous changes. If these changes are noted, the rectum must be removed. If the rectum can no longer be endoscopically evaluated because of a narrowing, or stricture, its removal is usually advised if adequate surveillance has not been performed for more than 5 years.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: Since my ulcerative colitis was diagnosed, I have been given an ileostomy and had it removed three times. I was told in 2007 that my current ileostomy would be permanent. I recently went to a new surgeon who told me it was possible until he saw my records and said I have too much scar tissue. How long does scar tissue persist in the abdomen after these surgeries?
A: Intra-abdominal adhesions are commonly seen in anyone who has undergone prior abdominal surgery. These adhesions begin to develop within 7-10 days of surgery and continue to increase for a period of time. The body then starts to dissolve these adhesions until they no longer disappear, and this usually occurs 6-12 months after surgery. Any adhesions that remain after that time interval are likely permanent.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: I have problems with scar tissue following repeated resections of my intestine. I have lost half of my colon and quite a bit of ileum. This will be my fourth surgery. Will a low residue diet keep me from requiring an operation?
A: Intra-abdominal adhesions cause difficulties in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. It is important to distinguish between symptoms caused by adhesions and Crohn’s disease because the treatment is markedly different. An operation is currently the only way to disrupt symptomatic adhesions, but carries the risk of additional adhesions and is avoided when possible. A partial obstruction can sometimes be overcome with a low-residue diet because the foods in this diet are more easily broken down into smaller particles and contain less than 10 to 15 grams of fiber each day. Foods included in a low-residue diet are cooked vegetables, fruits, meats, and white breads. Raw vegetables, beans, legumes, nuts, seeds, and whole grains are avoided. With the right food choices, a low-residue diet contains an adequate amount of nutrition, but some supplements (calcium, folic acid, vitamin C) are recommended if the diet is followed for an extended period of time.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: I have a hurting under my right ribcage. I have had my gall bladder out and still hurt there. It feels like a fist and hurts from the front to my back. The Dr. sent me for a CAT scan and says I have colitis, although I don't have any of the other symptoms. I would think I would have some of the other symptoms to be colitis. Would a CAT scan show only colon problems?
A: Computerized axial tomography (CAT or CT ) scan uses x-ray and computer technology to create images of the human body. CT scan provides images about internal organs, soft tissue structures, blood vessels, and bone. CT scans are usually completed in sections of the body. To evaluate the region of your discomfort the CT scan is usually of the abdominal location and would show the anatomy of the organs, soft tissue, vessels, and bone in this location. The organs in this location include the stomach, colon, small intestine, liver, spleen, pancreas and kidneys. The information from CT scan along with the clinical picture (your symptoms) usually helps determine the next course of action. I would recommend follow-up with your physician to see if CT findings explain your current symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: The Igg in my blood was over 25. I also have anemia. Colonoscopy, endoscopy, GI series, and MRI all came back normal. I had a lot of diarrhea, until I was put on Entocort EC. Can you still have Crohn's disease without inflammation showing up on any of the tests?
A: Usually for a new presentation of chronic (>4 weeks) diarrhea and anemia, many potential causes are considered such as include infections, celiac disease, inflammatory bowel disease (Crohn’s or ulcerative colitis). If the anemia is not related, then potential causes are even broader, such as microscopic colitis, endocrine related (hyperthyroidism, low cortisol level) and medications. Crohn’s disease is defined by having ulceration involving the lining of the intestinal tract and biopsies of the tissue confirming inflammation in a specific pattern. Sometimes it is difficult to locate the area of inflammation due to length of the intestinal tract, > 25 feet long. If none of the tests, including capsule endoscopy, reveal ulceration then another diagnosis for your symptoms should be considered.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have Short Bowel Syndrome, malnourished and need eg. form of iron. Which is the best form of iron to use with no ileal-cecal valve?
A: Iron is absorbed in the duodenum (1st part of the small intestines) and should not be greatly affected with short bowel syndrome unless Crohn’s or another factor is impacting absorption in the duodenum or there is a chronic source of blood loss. I would consult with your physician to determine if and how significant is the iron deficiency. There are several formulations of oral iron (ferrous sulfate, ferrous gluconate, and ferrous fumurate) and if oral treatment is not tolerated intravenous iron can also be prescribed. As for other nutrients that may be low in short gut syndrome due to absence of the end portion of the small intestine and or diarrhea include vitamin deficiencies (B12, A, D, E, K) and mineral deficiencies such as zinc, magnesium and calcium. Please see the Short Gut Syndrome and Crohn’s disease brochure nutrition section for further recommendations.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Is it normal for all your joints to hurt in cold weather? We just moved to WA State from LA. I have Crohn's and I have never hurt so badly.
A: In a subset of patients with rheumatoid arthritis, weather seems to impact on joint symptoms. It’s not clear in the medical literature as to which aspect of weather (barometric pressure, temperature, humidity, solar exposure) is the major driver in the subset of patients that are affected by weather. Although there is a lack of medical studies evaluating if weather plays a part in joint symptoms in inflammatory bowel disease patients, it is certainly possible that weather may be playing a part in your symptoms. I would also recommend seeing your physician to make sure there is not another reason such increased Crohn’s activity or a medication side effect.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Have there been any studies on the use of Aloe Vera in the treatment of Crohn's Disease? Also, if there is any proof as to the benefits of Aloe Vera? What would be the normal dosage?
A: In test tubes, aloe vera gel may also have anti-inflammatory and anti-oxidant effects. Aloe vera in animal studies may reduce inflammation in the ear and synovial (joing) fluid. There have been no studies published assessing aloe vera treatment for Crohn’s. There was a small study of 44 subjects published by Langmead et al (APT, 2004) assessing the effectiveness for treating mild to moderate ulcerative colitis. Forty-six percent of patients receiving aloe vera gel 100mL by mouth twice a day responded compared to 14% receiving placebo after 4 weeks, but remission and endoscopic improvement was not found to significantly different. Larger studies are needed in UC and studies are needed in Crohn’s before it can be recommended as a treatment.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2014
Q: I live in Kenya and have been on mesacol for the last four years. What's the difference between asacol and mesacol?
A: Mesacol and Asacol have the same mechanism of action and the active ingredient of both is mesalamine.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2014
Q: Is there a high risk of C-diff in ulcerative colitis patients?
A: Yes, there is a higher risk of C diff in ulcerative colitis patients. It is important to test for this infection in the setting of new diagnosis or flare of previously quiet colitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2014
Q: I have Crohn’s and cannot eat grain and vegetables. I am eating mostly carbs and I am gaining too much weight. What can I do to control the weight but still be able to eat?
A: It is important to eat a balanced diet and avoid too many refined sugars and carbohydrates. As raw fruits and vegetables are often poorly tolerated, it may be helpful to include plenty of well cooked fruits and vegetables. Consider juicing fruits and vegetables – this usually results in less fiber content than raw fruits and vegetables and may help avoid high caloric intake. Consider including high protein foods that have fewer calories than refined carbohydrates. If there is still difficulty, consider consulting with a nutritionist.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2014
Q: I had a resection of the terminal ileum for Crohn’s disease in 1967 and now have a very small tight anastomosis. Would an elective resection be beneficial at this time? I am 76 and fearful of blockage?
A: These blockages can be sometimes managed with dilatation using a colonoscope, especially if they are less than 2 inches in length and not associated with any abscess or fistula. If this approach is unsuccessful or inappropriate and the stricture is causing symptoms, an operation can be performed to remove the segment of narrowed intestine. Strictures caused by scarring without associated inflammation are usually unresponsive to medications.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I’ve had three ballon dilations in the last 14 months and they usually last 6 months or so. I’ve been on Humira for almost two years with no side effects. I have a stricture that really makes me constipated. My gastro said my intestines are free and clear of any inflammation but it's just the stricture. He said there are no other options except a colostomy? I find that hard to believe. Is he correct? What about anoplasty flap?
A: Crohn’s disease can cause structuring anywhere along the intestinal tract including where the rectum meets the muscles that provide control over bowel motions. A stricture at this level is generally treated with dilatation sometimes in combination with steroid injections into the site. The patient is then encouraged to use products that promote a well-formed stool that acts to dilate the area as it passes through. In rare instances, the stricture can be managed by excising a short area of narrowing and reconnecting the two ends of bowel usually in combination with a temporary ileostomy or colostomy. An anoplasty flap is generally not appropriate because the stricture is not close enough to the skin surrounding the anus to allow such an operation to be successfully performed.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I was diagnosed crohn's (jejunum) following diagnostic laparoscopy that ended with removal of 11" of small intestine. I was to start on Remicade three months post surgery. I am still on a liquid diet and having pain and bloating. Drs. are backing off because they can't "see" the area to assess/monitor. Pill camera patency pill failed again. During surgery, the surgeon saw more extensive damage, but could not remove it all. What other measures can they use to confirm the pathology report?
A: The segment that was removed should provide ample material to confirm a diagnosis of Crohn’s disease. Imaging studies such as CT or MR enterography can be used to visualize the remaining small intestine as can some forms of advanced endoscopy. Your symptoms may be caused by extensive inflammation in some of the remaining small bowel. If this disease cannot be managed with medical therapy, surgical treatment can be employed whereby the involved segments can be widened without removal of any intestine using a procedure called a strictureplasty. Operations in these more complicated scenarios are sometimes best performed by a surgeon experienced with the surgical treatment of Crohn’s disease.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I have ulcerative colitis. It seems no matter what I eat or do, I feel bloated constantly! Right after I go to the bathroom (when I can, that is) I’m still bloated! I use Canasa 1000 mg. I just started taking activated charcoal capsules. Am I going to feel fat and bloated the rest of my life?
A: Bloating may be a sign of many things including a reaction to the Canasa, constipation from the ulcerative proctitis, small intestinal bacterial overgrowth, etc. If you are having difficulty moving your bowels, this is the likely cause of the bloating. However, this difficulty can be because you have inflammation in the rectum blocking the output or, if colitis is under control, can be a more functional issue. You should discuss the possibilities with your doctor.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2014
Q: I’ve had Crohn's for almost 30 year and had a bowel resection surgery about 27 years ago. After surgery I went into remission for 10 years. I am doing Remicade every 4 weeks. I recently had my annual colonoscopy and they have discovered precancerous cells near the resection scar. My doc has recommended another colonoscopy in 6 months, but has not said much regarding the cells. What does this mean for me? How long until the cancer diagnosis comes? What can I do to delay that?
A: Surveillance colonoscopies are performed routinely on all patients with Ulcerative Colitis and Crohn’s disease. While the data are better established for ulcerative colitis, the same is considered to be true for Crohn’s: after having the disease for 8-10 years the risk of neoplasia (either pre-cancer (called dysplasia – which can be high grade or low grade) or cancer) increases by 0.5% - 1% per year above the general population. Factors that have been shown in studies to contribute to and exacerbate that risk include: duration of disease, severity of disease, extent of disease, concomitant Primary Sclerosing Cholangitis, family history of colon cancer. Anytime that pre-cancerous cells are found in IBD patients in the setting of inflammation, and not in a sporadic polyp (which can be completely removed like a polyp in a non-IBD patient can), there exists the potential for concurrent malignancy or the development and transformation. There is no guarantee that it will transform into cancer but impossible to predict. You should speak to your physician about the risks and benefits of surveillance colonoscopy and surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2014
Q: My daughter is 36 years old was diagnosed with Crohn’s about 6 years ago. She has been on humira for the past 2 years and it has worked well. She recently gave birth to a healthy baby boy. She was on humira throughout her pregnancy and is now breast feeding. Can the baby receive the vaccination for Rato virus, which is a live virus, if she is on humira and is breast feeding? I heard that patients on humira should not receive live vaccines. Is this the same for the baby?
A: Humira has not been associated with an increase in birth defects when used during pregnancy. However, there is active transfer across the placenta so the baby is born with detectable levels of humira which can last up to 6 months. During this time, live vaccines should not be given. In the US the only live vaccine is rotavirus. All other inactive vaccines can be given on schedule during this time and live vaccines scheduled for 1 year can be given on schedule.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: I've had Crohn's for 43 years and have coped well. I am scheduled to have a stoma relocation/revision from right to left . I am very nervous about the surgery. I would like the surgery performed using twilight and epidural as opposed to general anesthesia. Is this possible? I am told that there is a 2 to 3 day hospital stay and 2 weeks bed rest. Is a shorter recovery period possible?
A: Having a stoma revised and relocated can be a major operation depending on how much scar tissue the surgeon encounters at the time of surgery. Generally these operations are performed under general anesthesia. Revising a stoma can be done under epidural and sedation. Revising the stoma often means that the outlet has become narrowed, retracted below the skin level or a small hernia has developed. In this case, the surgery is generally less involved and the recovery is much shorter. If your surgeon has told you that the stoma is going to be relocated, that involves entering the abdominal cavity and moving the stoma to another location in the abdominal wall. This would require general anesthesia. The length of hospital stay depends on how well your pain control is post-operatively and how soon you regain bowel function. This is usually 3-5 days in the hospital and then 4 weeks recovery if all goes well.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: My 19 year old son just had bowel resection surgery and 3 stricture platies. He is recuperating. However, he still has lots of burping which was a major sign prior to surgery. Is the continued burping a sign that something else is wrong and that the surgery did not correct the problem?
A: Strictureplasties involve identifying areas of narrowed bowel due to Crohns Disease and making the wide open again. There are several different types of strictureplasties but they all relieve the obstructive symptoms caused by narrowing of the intestine. If your son is still burping, having abdominal distention, cramping or vomiting, these may be signs that strictures remain and weren't identified at the time of surgery. A small bowel follow through is an X-ray test where contrast is swallowed and the narrowing can be identified. The symptoms may also be due to scar tissue from the surgery casing a kink, twist, or narrowing in the intestine, known as a partial bowel obstruction. A CT scan or small bowel follow through would be the test of choice to diagnose this. Many times the symptoms will resolve over time, but if the symptoms persist, more treatment including more surgery, may be necessary.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: I was diagnosed with Crohn's Disease 17 years ago. The first 12 years were ok with, rarely a flare up. The past 4-5 years I've been experiencing many flare ups and problems. In October 2013 I had an Ileostomy surgery. Then last month a surgery to remove 1 foot of intestine. There were plans to reconnect but Dr. was unable to reconnect as there was too much inflammation. Therefore another surgery is planned. I’m worried about all these surgeries. What are the risks of so many surgeries?
A: Any operation on the abdomen is associated with risks during the immediate period following the operation as well as the long-term risk (5%) for blockage of the small bowel secondary to scar tissue creating adhesions. The small intestine is responsible for absorbing nutrients from the foods we consume, and an adequate length of small bowel is needed to ensure that an oral diet can maintain a healthy state of nutrition. In patients with Crohn’s disease, repeated operations to remove segments of the small intestine can result in a condition called short-bowel syndrome that sometimes requires TPN to supplement the patient’s nutrition by direct delivery of nutrients into the blood stream. Although operations for Crohn’s disease are generally avoided unless medical therapy is deemed inappropriate or ineffective for a variety of reasons, several procedures such as strictureplasty can be used as an alternative to removal of the small intestine in an attempt to prevent the development of short-bowel syndrome
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: I am scheduled to have 5 cm of my ileum removed, which is very small compared to what many people have removed! However, I learned that they are going to remove my appendix at the same time. Why? Is that necessary? What if down the road we find out it is good for something?
A: The last segment of the small intestine (terminal ileum) leads into the first part of the large intestine (cecum) and the junction between the terminal ileum and cecum is called the ileocecal valve. Crohn’s disease commonly affects this terminal ileum and/or cecum. The appendix arises from the base of the cecum and its role is poorly understood.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: I had surgery to remove my colon in 2000. Should I be supplementing my diet with vitamins? if so, which ones?
A: The food we ingest passes from the stomach into the small intestine (duodenum, jejunum, and ileum) before entering the large intestine (colon and rectum). The small intestine is responsible for absorbing most minerals and vitamins from the food we eat, and this process transfers these important substances from the bowel lumen to the bowel wall where the minerals and vitamins enter a network of blood vessels draining into the liver. The principal role of the large intestine is to remove water and electrolytes from liquid waste to hydrate the body and produce solid waste. The large intestine also absorbs vitamins that are created by the colonic bacteria, such as vitamin K, vitamin B1 (thiamine), vitamin B2 (riboflavin), and vitamin B12 (cobalamin). However, the bulk of these vitamins are absorbed in the small intestine through normal processes.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: My son was diagnosed in 2013 (at age 5) with ulcerative colitis. He had his colon removed in June 2013 and has an ileostomy bag. Dr.'s would like to do the j-pouch surgery on him, but I am very skeptical. How would I find parents of children my son's age that have ileostomy bags and going through similar situations? I see parents of much older children, but not younger ones. I am a single mother trying to deal with this all alone and I feel lost and overwhelmed.
A: While the decision to have j-pouch surgery is ultimately left for the gastroenterology and surgical experts, the CCFA is a wonderful resource to connect with other patients/parents with similar experiences. Speaking with the treating surgeon and IBD gastroenterologist may also provide patients/parents to exchange experiential stories. While IBD is a challenging disease at any age, younger children can often adapt quite well even to surgery, especially when the adults around them are able to make them feel comfortable about themselves. This positive adaptation is likely a result of a still formative self-identity in early years of life which is especially responsive to environmental influences, especially parental reactions. If the child does seem frightened, angry or depressed about having IBD or surgery, a few sessions with a behavioral specialist can be helpful to help teach coping skills often using play therapy techniques.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
June 2014
Q: My son was diagnosed with Ulcerative colitis about 2 and half years ago .He is been taking 3 times a day Asacol 4 X 400mg = 1600Mg. + Canasa once a day before bed time. In the past 6 months he got into a cycle of three weeks feels great and then a week to 10 days later he feels bad. Is this cycle normal? Can you provide any information on this issue?
A: This is commonly seen in patients who are taking biologics and notice before their next infusion or injection that “it wears off” and they feel symptoms. This is less common with daily medications such as oral and rectal mesalamine. However, I have several patients who tell me there is a pattern to their symptoms. Usually when this happens, we review the week or days that they feel poorly to make sure there is no change, for example, they are not eating something differently, under more stress those weeks, taking their medications regularly, not taking other medications during these weeks (such as ibuprofen), or some other pattern in their lives to explain this. Often there is no change and we know that IBD may be cyclical in nature. During these weeks, it may be useful to determine if there is active inflammation, by blood or stool tests.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: Why are the symptoms of UC so intense in the morning? Frequent bowel movements for a 2-3 hour period, with intervals lessening during that time.
A: Motility studies evaluating the rectum in patients with active ulcerative colitis show that rectal inflammation can lead to a sensitive, hyperactive and poorly compliant rectum. When ulcerative colitis is limited to the end part of the colon (rectum and sigmoid) symptoms such as tenesmus are common. Tenesmus is the passage of small stools with a sense of urgency and incomplete evacuation. A likely reason why symptoms are worse in the morning is the change of position from the recumbent position, while sleeping, to a sitting, standing or ambulating position while awake. More debris and fluid likely moves to the end portion of the colon (rectum and sigmoid) with the change in position due to gravity leading to tenesmus . The urgency and frequency may ease once debris from the rectosigmoid region is cleared but may persist if inflammation is severe.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: Is the clinical course and progression of ulcerative colitis less severe in Asian patients than in Caucasians? Are cancer risks different or the same in Asian patients?
A: There have been several studies suggesting that Asians have less severe ulcerative colitis and lower colectomy rates compared to other ethnicities. Many of these studies were in non-American Asians, but a recent study from a health care organization in California showed similar results. Asians are a heterogenous group and more data is needed to know about specific ethnicities. More data is needed to know if cancer risk differs from other ethnicities.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I’ve had Crohn’s Disease for 10 years and been on remicade for the last two years. I am fatigued all the time. Are there any foods or vitamins I can take to help boost my energy level?
A: Fatigue may be a consequence of factors related to Crohn’s and the treatment for Crohn’s, but may also not be directly related to the disease. An evaluation to determine the cause for the fatigue is recommended and correcting the underlying cause. An evaluation by your gastroenterologist would typically include evaluation for anemia, malnutrition, and active disease Crohn’s disease which may play a role in causing fatigue. If anemia is present, then vitamin deficiencies should such as iron and B12 can be low in the setting of Crohn’s disease. B12 deficiency may also cause fatigue without having anemia. Fatigue may not be directly related to Crohn’s. Factors such as hypothyroidism, infection, heart disease, unbalanced diet (in caloric enteric or nutritional value), inadequate sleep and lack of exercise may contribute. I recommend keeping your provider informed of your symptoms to allow for an appropriate evaluation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: My 16 year old son was recently diagnosed with Crohn's disease. He was also diagnosed with Eosinophilic Esophagitis. He has had multiple life threatening food allergies and asthma since birth. Is there any relationship between food allergies and Crohn's disease? Could an offending foods cause inflammation and Crohn's like symptoms in the GI tract?
A: There have been several studies evaluating if a specific diet causes Crohn’s disease and there has not been a clear link found so far. Crohn’s disease is not considered an allergic disease. Celiac disease is caused by gluten (found in wheat and barley) may cause symptoms that are similar to Crohn’s.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: My nine year old granddaughter has Crohn’s disease. She is doing well and feels fine. Since she is doing well, is there a need for her to attend various CCFA programs and events?
A: It is wonderful to hear your granddaughter is doing well. She would be a wonderful role model for other patients that are not in remission. The purpose of CCFA events is various, including education, networking and fundraising. Many of the events are meant to educate patients and caregivers about Crohn’s disease and ulcerative colitis and how it is cared for by medical providers. Some of the events are social, to provide social support and networking. Your granddaughter and caregivers can select which events is the right fit.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I recently had a flare. Prior to the recent flare I have been in remission for 10 years and I was taking mesalamine. The doctor wants to put me on Mercaptopurine and certolizumab pegol combination. The side effects are scary. What are the risk and benefits of this combination of medication?
A: There are risks to being on these medications. The risks need to be weighed against the potential benefits of better control of the disease (presumably Crohn’s). This risk/benefit balance should be discussed with your doctor who knows the details of your condition. Mercaptopurine has risks of side effects such as a flu-like reaction or inflammation of the pancreas (pancreatitis). There are also long term-increased risks of certain infections, skin cancer and lymphoma. The risk of these adverse events is still low, but increased over average risk. The certolizumab pegol also increases the risk of certain infections. There are other more unusual side effects to these treatments but these are the most prominent. The risks of these medications sound frightening, but most patients do not have side effects and if the treatment works well – generally the risks of the treatment are preferable to the consequences of uncontrolled disease. If the treatment does not work for the disease, the treatment can always be stopped and the risks generally are eliminated. Keep in mind that mesalamine, although generally a very safe medication without systemic effects on the immune system, is a very weak treatment for Crohn’s disease and it is very common that more effective treatments, such as mercaptopurine and certolizumab pegol are required. These are often very effective and the risks are acceptable if the treatment if effective.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: What are some effective treatments for acne that don't interfere with infliximab treatments?
A: Most acne treatment should not interfere with infliximab, particularly topical treatments applied to the skin. However, some treatments – such as antibiotics, might possibly cause diarrhea and aggravate the inflammatory bowel disease (IBD). You should let you GI doctor know if you are starting an antibiotic. There is one treatment used sometimes for acne called Accutane. It has been reported that this treatment maybe be associated with the onset or worsening of inflammatory bowel disease – although this conclusion has been debated and is not totally accepted. Discuss Accutane with your GI doctor if it is being considered to treat the acne. Of course, decisions regarding any acne treatment will be effected by the state of your acne and your IBD. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: What is a neo-end ilestomy?
A: An end ileostomy is created with an operation; the end of the small intestine (ileum) is connected to the abdominal wall and empties into a bag called an ostomy bag. With this arrangement the small intestine is not connected to the ‘downstream’ bowel. The terminal ileum is the very end of the small intestine where it empties into the colon (large intestine). When part of the terminal ileum has been removed the remaining ileum is sometimes called the neo (new) terminal ileum.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I am a 62 year old female. A colonoscopy in Dec 2013 showed Crohn's Disease. It is limited to the colon as confirmed by a small bowel series. I have no symptoms. However, the GI doctor put me on mesalamine and a six day series of Prednisone. Is there a need for medication despite having no symptoms?
A: Research has shown that the presence of active Crohn’s disease detected by colonoscopy, x-rays or blood tests, even if there are no symptoms at the time the testing is done, predicts a higher risk that serious symptoms will develop. This is why many Crohn’s doctors will recommend potent treatments to suppress the active inflammation – thereby decreasing the risk that symptoms will develop. Whether to treat asymptomatic Crohn’s will depend on the severity of the inflammation, the length of time the inflammation has been present, the location of the disease etc. Treatment of Crohn’s is also more effective early on – soon after the diagnosis is made, compared to treatment started months or years later. Other medications used in this situation also include azathioprine, methotrexate and anti-TNF therapy (Remicade/Humira/Cimzia). Be sure and discuss options with your doctor. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I am 59 and was diagnosed with Crohn's in April of 2013 after an intestinal blockage in the ilium. I am currently on 100mg of azathioprine. Is there anything I can do to unclog the intestine as soon as the symptoms start? I'm not currently on a special diet and only take a calcium supplement.
A: You may want to discuss diet with your doctor and possibly also a dietician. It may be helpful to avoid foods that are difficult to digest, particularly fresh fruit and vegetable skins – as well as excess fiber. These types of foods are more likely to get stuck in an intestinal narrowing and cause a blockage. If you feel like you are having early symptoms of a blockage, it may help to take only liquids, while you are waiting on further advice from your doctor. Depending on the situation and the level of Crohn’s inflammation, adding another medication when symptoms of obstruction start may be helpful. This is just another reason to let you doctor know when you are beginning to have symptoms that feel like a bowel obstruction. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html http://www.ccfa.org/resources/diet-and-nutrition.html
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I’ve had Crohns Disease for forty year. I’ve had two successful surgeries and been in remission except for fatigue and chronic constipation. What are some options to manage chronic constipation?
A: There are many ways to manage chronic constipation. Generally, the first goal is to eliminate factors that make constipation worse, such as certain medications or hormonal conditions. Lifestyle management comes next with increased dietary fiber, plenty of liquids and aerobic exercise. Laxatives are often needed. Most gastroenterologists discourage the use of stimulant laxatives such as senna, favoring products such as Miralax. Finally, there are prescription medications that may be necessary. Often, like with many conditions, trial and error is necessary to find the right strategy. Very helpful information is available from: The National Institutes of Health http://digestive.niddk.nih.gov/ddiseases/pubs/constipation/ The Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/constipation/basics/definition/con-20032773 UptoDate http://www.uptodate.com/contents/constipation-in-adults-beyond-the-basics
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2014
Q: I have had several surgeries. I have had a colostomy/ileostomy and a Hartmann’s pouch since 1989. Just recently, I am having a discharge from my rectum several times each day, and my doctor has no answer. What is causing this? Prednisone seemed to help, while I was on it for two weeks … any ideas?
A: The bowel lining is called mucosa because it secretes mucus. Patients who undergo creation of a colostomy or ileostomy without removal of the rectum can intermittently pass this mucus. Some people will pass mucus a few times each day while others will rarely discharge any mucus; most patients’ frequency is found to occur somewhere between the two extremes. The out-of-circuit bowel can also be inflamed secondary to the patient’s underlying disease or lack of mucosa nutrients normally contained within the waste. This inflammation can cause passage of blood tinged mucus that is usually of little clinical significance.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2014
Q: Does a CT-Scan show Polyps and diverticulitis?
A: CT imaging of the abdomen and pelvis can show either polyps or diverticulitis. A special imaging technique called CT colonography generates three-dimensional images to examine the inside of the colon that is otherwise only seen with colonoscopy. CT colonography is merely a diagnostic procedure, and a colonoscopy is required to remove any identified polyps. CT colonography is sometimes unable to differentiate stool from smaller polyps and may not be as reliable as colonoscopy. Lastly, CT colonography is generally not recommended for patients who have active Crohn's disease or ulcerative colitis because of an increased risk of perforating the colon. Standard CT imaging is used to diagnose diverticulits, which represent an inflammatory complication of pre-existing diverticulosis.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
March 2014
Q: What is a Neo-end illestomy?
A: An ileostomy is when part of the last portion of the small intestine, or the ileum, is brought out through the abdominal wall, usually in the right lower quadrant and fecal matter is collected in a bag connected to an appliance that fits over the stoma. An “end” ileostomy is usually done when the colon is removed and the ileostomy is most often permanent. A “loop” ileostomy by contrast is generally temporary, with the colon usually being left in place, so that it can “rest” or heal while the fecal matter is diverted through the stoma. “Neo” just means “new” so this might imply that the ileostomy has been redone with a small amount of ileum removed.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: I was in remission for 12 years great yes! But for the last 14 I have been unable to achieve this. I only have 23% of my small intestine left. What options are available for intestinal transplants? I have blood transfusions every 3 month. I am on TPN and have been for two years for malabsorption. I am in constant pain and in reality I am miserable. I need something. Any feedback welcomed.
A: I’m sorry to hear about your severe condition. Small intestine transplants are done at a handful of centers in the country; evaluation and patient selection are rigorous. If you have active inflammation and have tried all the approved/traditional Crohn’s medications, you may want to talk to your doctor about whether you’d be a candidate for any clinical trials (experimental medications). Further, Gattex (Teduglutide) is a specific treatment for short gut syndrome and you should talk to your doctor about whether you could be a candidate for this medication. Given the seriousness of your condition, a second opinion at a well-known IBD center would be prudent.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: Since the onset of my symptoms I have experienced excessive cold sweats that begin as soon as I wake in the morning and continue throughout the day until early evening. I was curious if this is a symptom of UC, or could I be dealing with another issue. My GI does think that is just my body trying to fight the inflammation in me. I do not have a fever when this occurs either. I was wondering if this is a symptom of my UC, and any suggestions for dealing?
A: Excessive sweating would be an unusual symptom of UC in and of itself. Other considerations would be a side effect of steroids, which are commonly prescribed in UC (although should just be used for short term therapy), menopause, low blood sugar, infection, and rarely an early sign of cancer such as lymphoma (but usually they are night sweats and also occur with other symptoms such as weight loss). There is an entity called “idiopathic hyperhidrosis” for which there is no underlying medical cause of the sweating. I would suggest consulting with your primary care doctor as well as your GI doctor. Certainly if your UC is not well-controlled both by symptoms and by colonoscopy, then it’s appropriate to discuss optimizing treatment for your UC. If the sweating were a symptom of the UC, then it should get better/remit when the UC is in remission.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: I was diagnosed with left sided UC 4 years ago. I have been on 6mp for 2.5years, and have always been prescribed Prednisone when I flare and it seems to work almost immediately. I have been in a "raging flare" for 1.5months with a co-occurring C-diff infection being treated by Vancomycin. I have constant excruciating pain that even the strongest medications in the hospital can't control. Do you have any advice?
A: You first need to clarify with your doctor whether he/she believes your symptoms at this point are more from recurrent CDiff, active UC or a combination (vs other). This opinion should be informed by CDiff testing, blood work and colonoscopy/biopsies. Depending on the outcome of this discussion/evaluation, other questions to ask: 1) do you need a different/longer treatment for the CDiff? 2) Do you need different treatment for the UC: are you on the right dose of 6-MP? Optimal drug dose is based on weight and how you metabolize the drug (your “TPMT” activity), as well as your white blood cell count and liver enzymes. You might want to discuss with your doctor whether your dose has been “optimized” and whether doing “metabolite” testing to see whether you are on a sufficient dose is possible. If your dose is optimized, then you should talk with him/her about other available therapies for UC. Steroid use should be kept at a minimum.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: I recently had a colonoscopy. The doctor did endoscopy tattooing. and also removed 5 large polyps. My urine is very blue. How can the indigo ink get into the bladder?
A: What has likely happened is that a small portion of indigo carmine dye was absorbed into a blood vessel and entered the circulation, where it was filtered by the kidneys, collected in the bladder, and then was excreted during urination. This is reported and should not cause alarm. In fact, one of the original uses of this dye was to measure kidney function. It is generally harmless and will clear after a short period of time.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: Is it normal to have blood with diarrhea with colitis. I was diagnosed 2 weeks ago. I am taking Lialda and sometimes symptoms are better and sometimes not but I still have blood with the diarrhea and sometimes without. I am trying to find out if this is normal.
A: Finding blood in the stool is not uncommon in ulcerative colitis. While blood is often the result of ongoing inflammation in the colon, it is important to consider alternative causes including hemorrhoid bleeding and occasionally infection. It will take time for medical therapy to become effective, but if bleeding persists the cause should be evaluated. Further, if there is continued bleeding due to active ulcerative colitis, it may signify that the current treatment is insufficient and a different regimen is needed.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: What is a sedimentation rate? Is there a standard level for each person? How is the sedimentation rate lowered?
A: The erythrocyte sedimentation rate is a blood test that can help healthcare providers track inflammation. It is a useful test, measuring the speed of erythrocytes descending through a special collection tube to assess systemic, body-wide inflammation. In IBD, it is essential to monitor inflammation with objective tests, as significant activity may not cause symptoms. Colonoscopy, CT-scans, and MRI are excellent tests for inflammation but they can not be frequently performed because of risk, expense, and inconvenience. ESR is a reasonably priced blood test that is easy to perform and provides non-invasive data regarding inflammation. The limitations of ESR are (1) it may not be elevated even when significant bowel inflammation is present, and (2) it is not specific for bowel inflammation, any inflammation can elevate the level. Despite these limitations, in selected patients ESR can be monitored to reflect how patients are responding to therapy. ESR or CRP that remains very elevated (your doctor will determine whether elevations are due to IBD) may indicate that a change in treatment is needed. In the coming years, more accurate non-invasive markers of bowel inflammation will become widely available, including stool tests of inflammation like fecal calprotectin and lactoferrin.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was diagnosed with UC 5 years ago and after a year of trying out different meds my dr. found a combination that worked for me. I started off with 60 mg of prednisone and have since then tapered down to 5 mg. I have been on that dosage for the last few years. Is it safe for to be on steroids for so long?
A: While 5mg is a low dose of prednisone, there is no ‘lower limit’ for what is considered safe. So while it is better than being on 60mg/day, it can still be associated with risk of side effects at a lower frequency. If there are medical alternatives available, then continued attempts should be made to come off even the 5mg/day of steroids, particularly in younger individuals where several decades more of exposure may be expected. In contrast, if someone is older or has significant co-morbidity that precludes further medical treatment, then it is reasonable to stay on long-term low dose steroids recognizing that the risk of side effects remain significant in that situation. Consideration should also be given for potential surgical treatment as surgery for ulcerative colitis is curative and would help coming off the steroids.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I have Crohn’s and have anemia and I get monthly shots of B12. I have trouble breathing with stair climbing or bending over and sometimes just a brief walk to another room. I rest as much as I can. How can I gain my energy back?
A: There is increasing recognition of fatigue and low energy as an ‘extraintestinal’ manifestation in patients with Crohn’s disease. Sometimes there is a nutritional cause for this such as low B12 or low iron and anemia. If you are still anemic and are deficient in iron, that could be a cause for your symptoms. Sometimes a gradual exercise program is able to help with improving exercise tolerance and reduce fatigue. Of course, it is important to ensure that your Crohn’s is under remission and that there isn’t an alternate explanation for your trouble breathing including problems with the heart or lungs.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I had a resection two years ago due to blockage from Crohn's disease. I have been on no medicine for over 5 years. I had a colonoscopy last year and the inflammation is back. Is that ok for Crohn’s disease patients not to be on medicine?
A: Most patients with Crohn’s disease will require some long-term medical treatment. In studies were people stopped medicines when they were feeling well and in remission, a substantial portion developed a relapse within two years. However, there is a subgroup of patients who, particularly after a limited surgical resection primarily related to strictures (which is what it sounds like you had) who do well for a number of years without recurrence of disease though in most cases, it comes back eventually. In such patients, it is reasonable to monitor for endoscopic evidence of active disease periodically (every 1 year or so) and then start treatment early once endoscopic lesions have developed but before clinical symptoms. We know that in most patients, endoscopic disease precedes clinical disease, and that treating early on is associated with better outcomes.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2013
Q: Please discuss self-dilation for rectal stenosis. What are the risk and benefits?
A: Rectal stenosis is a narrowing of the anal canal, and patients who have Crohn’s of the anus and part of the rectum closest to the anus are at risk for developing this condition. Similarly, patients who have had a J-pouch may sometimes develop a post-operative anal stenosis. It is important to have the stenosis (whether from Crohn’s or from the J-pouch) evaluated by a surgeon to make sure that the narrowing is not being caused by cancer. However, once the cause of the stenosis has been confirmed as a benign stricture, dilation is a very effective treatment. Often times, the first or second dilation is carefully performed under anesthesia so as not to damage the anal sphincter. If the stenosis recurs after dilations, self-dilation at home is sometimes very useful in alleviating symptoms of obstruction and constipation. Patients can be instructed how to safely insert the sequential dilators on a daily basis much like patients with recurrent esophageal strictures have been taught to self-dilate. The biggest risk is damage to the anal sphincter, but this can be avoided if the diameter of the dilators being used are slowly increased over time, and that there is not too much of a stretching initially.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: I was diagnosed with Crohn's disease three years ago. I had pancreatitis, uveitis, and abdominal pain. My doctor started me on Entocort and my fatigue seems a little better. I have uveitis right now and feel like I have a hard time concentrating and I wanted to know if that's due to my uveitis and dry eye or could it be a symptom of Crohn's? I also do not experience the diarrhea that is a common symptom can that happen?
A: The uvea is the middle layer of the eye, just below the sclera. Inflammation of the uvea is called uveitis. Iritis and iridocyclitis are subtypes of uveitis. Uveitis may result in painful, red eyes. This condition is seen in people with Crohn’s disease but is not considered to be Crohn’s involving the eye as uveitis can occur in people without Crohn’s. Painful, red eyes – or any change in vision should be evaluated by an ophthalmologist as soon as possible. Treatment is often with medicated eye drops. Do not assume the symptoms are just from dry eyes. A nice discussion of inflammatory bowel disease associated eye problems can be found on the CCFA website: http://www.ccfa.org/assets/pdfs/eyes.pdf. Not everyone with Crohn’s experiences diarrhea. It depends on the amount of intestine that is involved and the behavior of the Crohn’s. Some people get narrowed areas in the intestine that may actually slow the bowel down.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: After an appendectomy about 6 weeks ago, I have suffered the worst UC symptoms I've ever experienced. Is this possibly related to the appendicitis?
A: It is not clear why your UC symptoms worsened after the appendicitis. Perhaps antibiotics were used around the time of the appendicitis, or maybe your UC medication had to be stopped for a while. You should discuss your current flare with your doctor.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am writing a report on IBD and wish to get information about the number of people with the disease in Connecticut.
A: Two major epidemiological studies on estimates conducted in the United States, one in California and the other in Minnesota. The results for both studies are included in “The facts About Inflammatory Bowel Disease” http://www.ccfa.org/assets/pdfs/ibdfactbook.pdf. Information from these studies as well as information on Connecticut population data will assist you in identifying an estimated number of people with the disease and estimated number of new cases.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: My 11 year old son has just been diagnosed with Crohn's Disease. His doctor, a pediatric GI, has given me the option for the next level of treatment as Imuran or Remicade. What are your experiences with either of these drugs for young children?
A: I am an adult gastroenterologist but sought the opinion of four pediatric gastroenterologists. Either medication can be used, depending on the details of the individual case. They had no particular preference, in general, between Imuran or Remicade treatment in an 11 year old.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am not able to afford my medication as I have no insurance - please advise me of programs that could help me or manufacturers of the medication that I could get for free. I need Flexeral, Delzicol 400 mg and Prednisone 5 mg - please help
A: There are a number of patient assistance programs that you may contact for help with paying for medication including: www.needymeds.org and www.rxassist.org. The manufacturer of Delzicol has not yet established a patient assistance program for this medication. Beginning Oct 1, 2013 you can enroll in one of the Health Insurance Marketplaces for low cost insurance. Check out www.healthcare.gov.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am 41 year old living with Crohn's since age 9. I have permanent colostomy with a resection of the small bowel, no terminal ileum. I also have chronic peristomal pyoderma gangrenosum. I may have lost remission due to a Norvo virus infection. I’m on 6-MP, steroid dependent and have hypersensitivity to Remicade and Humira. What other options are there for me to discuss with GI and I am open to trials? I know there are some having immune transplants and a new IV infusion from Japan. Any ideas?
A: There are options, FDA approved options would include certolizumab (Cimzia) and natalizumab (Tysabri). Ask your doctor if the 6MP treatment is optimized. Consideration might be given to using other immune suppressing treatments approved for other indications but not Crohn’s. Research treatments are another good option. The CCFA website has helpful information regarding participation in research trials: http://www.ccfa.org/resources/intro-to-clinical-trials.html You can also search for available treatment trials on the CCFA website: http://www.ccfa.org/research/participate-in-research/find-studies-and-clinical-trials/ It is most important that you discuss your situation with your doctor. If your doctor does not have any recommendation beyond your current treatment, consider pursuing an opinion from a gastroenterologist with a special interest in Crohn’s disease.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I have chronic, everyday perineal pain secondary to an unhealed perineal wound from surgery. After surgery my body reacted and pyoderma gangrenosum started to form in that area. I take ibuprofen everyday - usually six 200mg tablets a day. It seems this is the only thing that helps besides narcotics and I can't take those every day. What can ibuprofen do to my Crohn's disease down the road?
A: Ibuprofen has been shown to make Crohn’s worse, possibly causing flare ups. It can also cause stomach ulcers if used at the dose you are taking, even in people without Crohn’s. Of course, it is also not a good idea to take the narcotic pain medicines long term. You should discuss options to get the pyoderma gangrenosum under control with your surgeon and your gastroenterologist. When the pyoderma is controlled, there should be less pain and less need for the ibuprofen or narcotic pain medications.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am currently only on Remicade (6th year). It does keep symptoms at bay. However, frequently, a week or so before time for next treatment (every 8 wks) I get rashes on neck, chest, face, shins, or bend of arm. Is the Remicade wearing off too soon? Can you give me info concerning this issue? I have seen dermatologists and my MD. I get steroid shots and creams that do help but I would like to know the cause and possible prevention.
A: This is a peculiar pattern, most immune reactions to Remicade occur immediately or 1 – 2 weeks after infusions. Symptoms that occur near the end of the 7 weeks suggest that the Remicade effect is wearing off. It sounds like your Crohn’s symptoms are controlled for the whole 8 weeks, however. Skin lesions are best diagnosed by a dermatologist with a skin exam. Based on the timing, it is tempting to speculate that the skin rashes are a result of Crohn’s activity – but this would be best judged by your gastroenterologist and dermatologist. Ask your gastroenterologist if any testing needs to be done to assess the activity of the Crohn’s. Sometimes it is helpful to measure the Remicade level in the blood and also determine if your body is making antibodies against the Remicade – if it is suspected that the skin rash is some kind or Remicade reaction. This is an expensive blood test however. The CCFA website has a description of skin lesions seen with Crohn’s. It does not sound like you have one of these, but ask your doctors: http://www.ccfa.org/assets/pdfs/skin.pdf
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: Can ulcerative colitis cause small intestinal bacterial overgrowth, or vice versa?
A: Ulcerative colitis is not likely to cause small intestinal bacterial overgrowth. However, it is thought by some researchers that small intestinal bacterial overgrowth may be relatively common, so some people may have both ulcerative colitis and bacterial overgrowth. There is much ongoing research looking at the role of bacteria in ulcerative colitis. However, at this time, small intestinal bacterial overgrowth is not considered a cause of ulcerative colitis.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I have had Crohn's in my terminal ileum since 2007, and maintained on Pentasa. I've recently become anemic. Colonoscopy and pill cam looked normal, but my SBFT indicated that my TI "appears relatively smooth and featureless with loss of its normal mucosal fold pattern consistent with a history of chronic terminal ileitis." My questions are: 1. Is my mucosal lining permanently damaged? Can it regenerate? 2. Would these results be enough to explain anemia?
A: 1. There may be some permanent scarring in the section of small intestine affected by the Crohn’s. There is potential for regeneration, but some scarring may be permanent. 2. It sounds like there is no obvious explanation for the anemia on the tests described. However, there are many cause of anemia besides loss of blood from active Crohn’s. Ask your doctor about this.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: Is there any new research on diet and IBD?
A: In the study “Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease”, completed by Cohen et al. (2012) as part of our CCFA Partners research initiative, yogurt, rice, and bananas were more frequently reported to improve symptoms whereas non-leafy vegetables, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high-fiber foods, corn, fatty foods, seeds, coffee, and beans were more frequently reported to worsen symptoms. You can find out more information about these results in the abstract or manuscript of this study published here: https://cgibd.med.unc.edu/ccfapartners/results.php .
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2013
Q: Is cimzia safe to take if my husband and I plan on having more children?
A: The anti-tumor necrosis factor agents – infliximab, adalimumab, golimumab and Certolizumab – (B) are considered low risk during pregnancy and compatible with lactation. Infliximab and adalimumab are IgG1 antibodies and therefore are actively transported across the placenta in the 2nd and 3rd trimester. Levels of drug are detected in the cord blood at birth and in the infant for up to 6 months from birth. Certolizumab is a Fab’ fragment and crosses the placenta only passively so levels are minimal at birth. While the use of adalimumab, golimumab and infliximab during pregnancy has not been associated to date with any increase in infections or immune development, infants exposed in utero should not receive live virus vaccine for the first 6 months of life. In the United States the only live virus vaccines up to 6 months is rotavirus. The mother and the pediatrician should be aware of this risk as well as that all standard attenuated vaccines can be given on schedule and with good response. To minimize placental transfer, in my practice, I give the last dose of infliximab at about week 32 gestation and adalimumab and goliumab at weeks 36-38. If the patient has active disease, they should continue on schedule. No change to timing of dosing or vaccinations is needed for Certolizumab. However, all infants exposed to anti-TNF agents in utero should be monitored closely by their pediatrician for unusual infections. Based on this, if you plan on getting pregnant soon, the best anti-TNF choice for you in certolizumab (Cimzia)
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2013
Q: What is leaky gut syndrome?
A: Leaky gut is a loose term used to describe hyperpermeability of the gut, or too much space between the cells lining the gut. The consequence of this is that gut contents can more easily seep out into the body and blood stream and potentially cause an inflammatory response.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have recently started to lose a lot of hair. I have severe Crohn’s and am on Imuran and Remicade. The dermatologist says that these medications are associated with hair loss. I don't want to lose my hair. Have people had experiences with hair loss, and, if so, what have they done? The dermatologist said that at some point the hair loss will "level out" .
A: In the setting of Crohn’s there are several potential triggers for hair loss. Malnutrition, zinc and iron deficiency, excess vitamin A, severe illness, and medications are potential reasons. Inflixmab (Remicade) and azathioprine (Imuran) can rarely cause hair loss. Blood work through your gastroenterologist or dermatologist may help identify if there is a nutritional deficiency. If the hair loss can be clearly attributed to the medications, then it will need to be determined if the hair loss is from an immune related reason, such as alopecia areata. Patchy hair loss is seen with alopecia areata, whereas diffuse hair loss may be seen with nutritional deficiencies and malnutrition. Alopecia areata can sometimes be treated with medications that will allow continuation of Crohn’s therapies .I would recommend following up with your dermatologist to discuss the issue.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: What Treatment options do I have for Excessive BM I have 25 to 65 a day and have short bowel syndrome due to numerous surgeries due to infected areas from Crohn's? I have done so many things and no help. I also have severe hemorrhoids and they say they cannot do surgery on them due to since I use the restroom so much that the risk of infection is much higher. So I am at a loss. Any help please.
A: Treatment will need to include treating Crohn’s disease and treating short gut syndrome. If you have active Crohn’s disease, then medical therapy should be initiated or adjusted if possible. As far as management of short gut syndrome, this will require help from your gastroenterologist and dietician. Some medical centers may have providers that specialize in short gut syndrome. Treatment of short gut may entail treatment with anti-diarrheals, octreotide, gastric acid suppressants, bile acid resins, dietary modification-decreased fat intake, treatment for small bowel bacterial overgrowth, and supplemental nutrition with total parenteral nutrition (nutrition through an intravenous catheter). Teduglutide, a glucagon like peptide 2 analogue, may help increase absorption and decrease fluid and nutrient losses in the small intestine. A short gut syndrome brochure is also available through the CCFA website.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have been on Remicade for almost a year. I was going to the hospital every 8 weeks for infusions, but now I go every 6 because of recurring symptoms. Is this common? How common? Have you ever heard of anyone going more frequently AND increasing the dosage? From time to time I will get a really red rash all over my body and my face and hands get puffy and it burns really bad. Is this a common side effect of the Remicade?
A: Loss of response to infliximab (Remicade) is common and occurs in up to 50% of patients. This may be due to increased clearance of infliximab over time. So by the 8th week you may no longer have drug in your blood stream. There is more than one approach to handle recurring symptoms. Your gastroenterologist may want to obtain an infliximab level immediately before you are due for an infusion to help determine if a change in infliximab dosing and frequency is needed. Your provider may decide to empirically increase the dose if you are not on the maximum dose or/and increase the frequency of the infusion based on the timing of your recurring symptoms. Rash may occur with infliximab and I would recommend seeing your gastroenterologist and dermatologist to determine the type of rash (such as from a lupus like syndrome, psoriasis, or photosensitivity) and treatment needed
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: What are the benefits of using brand Delzicol vs a generic product?
A: There are two groups of 5-aminosalicylates, mesalamine and non-mesalamine 5-aminosalicyalte. Mesalamines are 5-aminosalicylates that are released at specific pH. The non-mesalamine 5-aminosalicylates are released by bacterial breakdown. Delzicol is a mesalamine. There is no generic mesalamine available in the United States. Other oral mesalamines include Apriso, Asacol HD, Lialda, Pentasa, and Delzicol. The mesalamines differ in how they release inside the gastrointestinal tract. Your gastroenterologist can help you determine which product is best for you.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I was diagnosed with UC almost 30 years ago. Last year, my gastroenterologist removed most of a "precancerous polyp"during a routine colonoscopy. Since then, the polyp has grown back in the same place during the 3x I was rechecked *, while there is no additional dysplasia, the dr. is recommending that I have a prophylactic removal of my colon and has referred me to a general surgeon. Where can I find more information about this type of surgery? Is there a specific type of specialist to ask?
A: If the polyp is in the field of active colitis and cannot be removed then the surgery is a proctocolectomy (colon and rectum removed). The surgeon would tell you if you are a candidate for a pouch (small intestine used to create a pseudo-rectum) versus an ileostomy. Colorectal surgeons specialize in surgery pertaining to the lower gastrointestinal tract. More information about proctocolectomy can be found at the Crohn’s Colitis Foundation Association website (Surgery for Crohn’s and Ulcerative colitis brochure) and the American Society of Colon and Rectal Surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have a history of mild colicky pain in abdomen in on and off nature, decreased appetite, low grade fever (20 days), weight loss, weakness for 4-5 months. Examination (colonoscopy and CT scan) suggested IBD (possible crohn's diseae). However biopsies indicates non specific colitis and rule out IBD. I am prescribed sulfasalazine and budesonide tablet. I have 4-6 bowel movement/day but no pain. Please guide if I should get further examination done to confirm diagnosis of crohn's disease.
A: A diagnosis of Crohn’s disease is based on a constellation of findings on endoscopy and pathology. Imaging of the small bowel is usually needed as well to determine the extent of disease. The findings mentioned do not confirm Crohn’s but also do not eliminate it as a possibility. Early in the disease process specific findings on pathology may not be present and over time may change to one that is more specific for Crohn’s. So, a follow-up colonoscopy with biopsies several months later may helpful. There are blood tests (such as saccharomyces cerevisiae antibody) for Crohn’s but there absence does not eliminate Crohn’s as a possibility. Of course, your physician should consider additional diagnoses.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have had Crohn's disease for 33 years and was recently diagnosed with a high grade retroperitoneal sarcoma. Before surgery I will undergo radiation therapy and am very concerned about how this will affect my IBD. I have not been able to find much information on this topic. Can you direct me some literature or website? Anything would be appreciated. Thanks.
A: In a review by Chon et al, published in the Oncologist, the effects of radiation therapy in patients with inflammatory bowel disease were assessed. The largest study (28 patients) evaluating the effects of radiation to disease activity, 21% has severe acute effects and 29% severe late effects. There was no control group. The risk was higher for late effects in patients without radiation therapy precautionary measures. Precautionary measures included lateral decubitus position, proton beam therapy if available, smaller fields, scheduled rest periods. Reference: Chon B, Loeffler J. The Oncologist. 2002;7:136-143
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: Can people with Crohn’s safely donate blood. I'm 16 and in my state old enough to donate, however my parents are concerned just because of my Crohn’s I shouldn't donate . My mom also said because I take 6mp they won't let me donate? I'm not having a flare and meet all the criteria. Is there any reason that I can't donate if my blood counts are currently fine?
A: Crohn’s disease will not disqualify you from donating blood. On the other hand, Crohn’s that is not well controlled and having complications related to Crohn’s disease such as anemia are reasons you may not be able to donate. Treatment with 6-mercaptopurine will not disqualify you. More information is available at the American Red Cross website, www.redcrossblood.org.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: My son is an athletic 16 year old diagnosed this year with CD. He pushes himself very hard physically but is unable to build muscle despite eating mostly protein, fruit and vegetables. He is extremely fatigued. He is on Pentasa, Flagyl and Methotrexate (oral) - 3 weeks. Will he stop feeling so tired? Will he ever get back to normal again? Can he continue to pursue athletics now that he has Crohn’s or is that hurting his progress toward remission?
A: The symptom of fatigue may be a combination of factors related to Crohn’s disease: active disease which will cause fatigue and even weight loss, anemia from blood loss related to the disease, and malnutrition due to inability to absorb nutrients adequately. So all these factors need to be taken into consideration and addressed to help him improve. Methotrexate’s clinical effect may take up to 12 weeks so it is too early to know if he is a responder to medical therapy. If his Crohn’s is very active, he may have physical limitations and he may be placing himself at risk for complications and increased symptoms with moderate-high intensity exercise. Once he is in remission or has mild symptoms he may resume his regular activity with guidance of his physician. In fact, exercise is encouraged to maintain muscle mass and encourage well being when inflammatory bowel disease is not very active.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2013
Q: Do people ever gain weight after colonectomy surgery?
A: Patients’ weights can respond differently to having their colons removed. For example, patients who have taken steroids for an extended period of time often experience weight loss after their colon surgery because they are able to successfully discontinue their steroid therapy. Similarly, patients kept inactive secondary to their disease may lose weight after the affected bowel is removed because they can resume more vigorous activities after recovering from surgery. On the other hand, patients whose diet or caloric intake was limited by their disease, will often gain weight after their colectomy because they can return to a more healthy diet that enables their bodies to rebuild.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
February 2013
Q: I have been going through some rough flares recently and am so tired all the time. I used to go to work with initiative to accomplish goals and be successful in what I do. Now I just do not care. I know that I am blessed to have a job, but struggling with this disease has taken away my drive for work, exercising, and even spending time with my family. Do you have any advice on how to get the drive back?
A: Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing. When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: My wife just up and left me 4 weeks ago and my stress level is at an all time high. I feel like I'm having a breakdown and my stomach has been in constant turmoil. I tried now for 4 weeks to tough it out and let myself heal emotionally the natural way, but it just isn't working. Any advice would be greatly appreciated on how to deal with the stress and managing my Crohn’s disease.
A: Life stress, especially the loss of a relationship, has been linked with worsening gastrointestinal symptoms in patients with IBD. This is thought to be due to the strong connection between the gut and brain, especially the areas of the brain that regulate our emotions. Though I’m sorry to hear about your recent break-up, there are several things you can do to decrease stress and help yourself feel better during this challenging time. First, it is very important to get back to activities that are enjoyable for you, even if it is difficult to force yourself to do them. When we relax or find pleasant diversions, it gives our brains a rest from processing the stress. Taking 10 minutes a day to focus on relaxation can be effective in decreasing stress. One breathing exercise involves deep slow breathing…counting to 4 while breathing in through your mouth, holding it for 4 counts, and letting the breath out through your mouth over 8 counts for 10 breath cycles can decrease stress. Second, finding the company of trusted friends is especially important when dealing with stress, as positive social interactions have been shown to decrease the stress response that affects the gut. Finally, if stress is chronic or extreme, it can through a switch in the brain causing an emotional reaction to become a more clinically significant depression or anxiety disorder which can benefit from the services of a professional therapist or counselor. Letting your gastroenterologist know about your life stress is a good place to begin.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it. Being told you have what is a lifelong disease that will never be cured, and will likely only get worse and may lead to surgical removal of parts of your intestines is really like being continually smacked in the face. How exactly do you accept that, I mean truly accept it? Where do I start?
A: The first place to start is to give yourself permission to have a reaction and to know that it is normal to have a range of responses when diagnosed with Crohn’s disease, something unexpected and life-altering. It is natural to go through some type of grieving process about the loss of health, similar to how people react to the loss of a loved one. The responses involved vary among individuals. Some people get sad, others get angry but there is no right or wrong way to grieve. What is important is that you recognize your feelings and remind yourself about other difficult challenges you have adjusted to in the past. Although the passage of time is the best healer, there are active steps that have helped others with Crohn’s disease accept their diagnosis. Talking about it with others is a good first step whether it is good friends or family or through a CCFA support group or activity. Some patients find it helpful to journal about their experiences as a way to work through the emotions. Others find it useful to focus on other aspects of their lives that they can control. For example, thinking about three positive things in your life or three small tasks or steps you will achieve that day. Finally, others have found that “finding the silver lining” about a situation (i.e., something positive or something that could be even worse by comparison) helps them feel better. In fact, many studies show that optimistic thinking can positively influence how well your body copes with the disease and how well your immune system responds to the medications or your gastrointestinal tract heals from surgery.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
January 2013
Q: Is there any guidance for the frequency of having a colonoscopy for someone with long standing Crohn's (30 years)?
A: The major governing organizations in the field of gastroenterology (American Gastroenterological Association and American College of Gastroenterology) have developed recommendations for patients who have ulcerative colitis (UC), with similar guidelines for individuals who have Crohn’s disease involving the colon. These guidelines were developed due to increased risk for colorectal cancer in patients living with ulcerative colitis and Crohn’s colitis and are based on the extent, duration, and age of disease onset. Individuals who have pancolitis (colonic inflammation in all or most of the colon) should have a surveillance colonoscopy 8 years after diagnosis, and individuals who have left-sided colitis should have a surveillance colonoscopy 15 years after diagnosis. After this initial surveillance colonoscopy, colonoscopy should be repeated every 1-3 years. If a patient has both colitis and primary sclerosing cholangitis (PSC), it is recommended that they have a colonoscopy annually after initial diagnosis. It is important to have this discussion with your gastroenterologist since guidelines will need to be adjusted based on how the individual is doing. There may be additional things to consider depending on the individual patient, including the degree of inflammation in the colon, any prior history of pre-cancerous changes in the colon prior to, or during diagnosis, and family history.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: Could stress cause my daughter to develop IBD or an ulcer? About six months ago she started having "stabbing pains like needles" in her stomach. We have taken her to the doctor repeatedly, he ran blood work, but said everything is "normal." She has weight loss, repeated illnesses, lowered immune. What tests can you recommend?
A: We often blame stress in the development of peptic ulcer disease by increasing the amount of acid produced in the stomach. However, it has been shown that most ulcers in the upper GI tract (stomach/duodenum) are caused either by a specific type of bacteria known as Helicobacter pylori (Helicobacter pylori) or by non-steroidal anti-inflammatory medications (NSAIDS) such as ibuprofen. A person with Crohn’s disease also could develop inflammation and associated ulcers within the entire gastrointestinal (GI) tract, including the stomach and duodenum. The evidence that directly links stress and ulcers is not as clear. Laboratory studies (i.e. blood and stool tests) can be helpful to check for factors like ongoing inflammation and to evaluate for other things that may feel similar to ulcer-type pain (like inflammation in the pancreas or gallbladder). However, if your daughter already has established IBD, and recently experienced weight loss and other symptoms they may be consistent with an IBD flare, additional testing including endoscopy, additional blood work, and stool tests, may need to be done to better evaluate the intestinal tract. These concerns should be discussed with your primary gastroenterologist to formulate a plan to determine whether your daughter’s symptoms are directly related to her IBD or another medical issue separate from this.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: What are the chances of being misdiagnosed with Ulcerative Colitis (UC) and actually having Crohn's disease (CD)? I recently had my colon removed and had a J-pouch created. What are the symptoms to look out for if it is actually Crohn's?
A: When an individual has the “classic” changes associated with CD, including involvement of the GI tract outside of the colon, especially in a part of the small intestine closest to the colon known as the ileum, patchy areas of disease/inflammation known as “skip lesions” (normal, non-inflamed areas of intestine alternating with inflamed/diseased areas), or involvement of the perianal area, the diagnosis of CD is much more clear. Furthermore, there are certain changes when pathologists look under the microscope to look at the biopsies from colonoscopy which may be consistent with CD, and certain types of CD (structuring, penetrating – fistulas) which will be seen either by endoscopy, radiographic studies (i.e. MRI enterography, upper GI series with small bowel follow through), or at surgery. A patient typically is diagnosed with UC when there is continuous inflammation within the affected colon without involvement in the GI tract outside of the colon (by endoscopy, PillCam study, and radiographic studies), and biopsies show chronic inflammation without the microscopic findings associated with CD. In patients who have to undergo a colectomy (removal of the colon), the removed colon is sent to the pathologist to determine whether the patterns of inflammation or more consistent with UC versus Crohn’s colitis. Even with the rigorous and careful evaluation by your medical team before and after the colectomy, we find that a percentage of patients originally diagnosed with UC actually have CD. Follow-up care with your gastroenterologist and surgeon is important. If you have any symptoms of cramping, diarrhea, bleeding, weight loss, or pain with passing bowel movements, it is important to let them know. Having these type of symptoms does not mean you necessarily have CD rather than UC, but is something that should be investigated to make sure that there are no ongoing issues like pouchitis (inflammation of your J pouch), infection, or issues with the surgical sites.
ANSWERED BY:
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: I have a ileostomy bag that was supposed to be reversed after six months, but never was (had surgery in 1998). The surgeons says that I can’t get the surgery to reverse the bag cause it’s been too long of time. Is that true?
A: The issue of whether an ileostomy can be reversed is based on several features that are unique to each individual patient. These issues include the initial reason for the ileostomy and the condition of the bowel that has been unused. If the ileostomy was created because the unused bowel was diseased, the ileostomy can only be reversed if the previously diseased bowel is removed and the remaining unused bowel is healthy and functional. Alternatively, if the ileostomy was created to protect a surgical site created in previously non-diseased bowel, the ileostomy can be reversed if the remaining unused bowel is healthy and functional. In either situation, recovery from reversal of the ileostomy may be more difficult and prolonged if the ileostomy has been in place for a long period of time.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I have Crohn's and am almost always extremely dehydrated - eyes so dry I can't blink, finger tips puckery, mouth dry no matter how much water I drink. Is this from Crohn's? What should I do?
A: Dehydration can be caused by a number of disorders and can also be associated with electrolyte imbalances. We lose water through many routes including moisture in our breath as well as water in our stool, sweat, and urine. It is important to maintain an appropriate intake of fluids such that you urinate at least 4-6 times each day. You can also look at the color of your urine. If your urine is a light yellow to clear, this can indicate you are adequately hydrated. Some patients with Crohn’s disease suffer from watery diarrhea that diminishes their water and electrolytes. These persons should work with their physicians to manage the diarrhea, but they should also replenish their losses by drinking sports drinks that contain both water and vital electrolytes such as sodium and potassium.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: When my Crohn's disease is flaring, I shake, or vibrate so bad it wakes me up. I'm not diabetic. Is this from Crohn's?
A: Chills or rigors are episodes of shaking or shivering that can be associated with a fever. It is an automatic response that occurs for a variety of reasons, and is often a sign that suggests inflammation or infection such as that seen with active Crohn’s disease. Shivering involuntarily occurs when someone feels cold and acts to raise the body’s temperature. The trigger point at which this response occurs is set in the brain and has been described as an internal thermostat. With inflammation or infection, chemicals called pyrogens reset the trigger temperature. This in turn tricks the body into feeling cold and shaking occurs to raise the body’s temperature.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn's about a year ago and by most markers/symptoms I'm in remission yet continue to have periods of fatigue that I didn't have prior to my diagnosis. Is it common/normal to struggle with tiredness even though in every other way I'm fully in remission?
A: Fatigue is a symptom commonly seen in patients with Crohn's disease symptom and can exist for several reasons. While a flare of Crohn’s disease can cause someone to feel fatigued as his or her body is fighting inflammation, fatigue can also occur when the disease is in remission for other reasons such as anemia, depression, or medications. Anemia linked to the decreased production or gradual loss of red blood cells is commonly seen in patients with Crohn’s disease and can lead to fatigue. Chronic diseases such as Crohn’s disease are also often accompanied by emotions such as sadness or depression, and these disorders can cause fatigue. Lastly, fatigue can be a side effect associated with certain medications used to treat Crohn’s disease such as methotrexate, sulfasalazine, and steroids. Any feelings of fatigue should be discussed with a physician so he or she can look for the cause and recommend appropriate treatment. It is also suggested that patients with fatigue eat a healthy diet, exercise on a regular basis, and get an appropriate amount of sleep each night.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is cause and treatment for black stool?
A: Black stools can occur for a variety of reasons in patients with Crohn’s disease and appropriate treatment depends upon the cause. Certain medications such as iron and bismuth or particular foods that are blue, black, or green colored can also cause black stools. More importantly, black stools can occur because of slow bleeding from inflamed bowel lining; the red blood turns the stool black as bacteria in the stool interact with the blood. The source of bleeding is usually located in the stomach, small intestine, or right colon. Bleeding closer to the rectum or anus more commonly causes the stool to be red instead of black. It is important to discriminate between black stools caused by medications and foods versus bleeding from the bowel wall. This symptom, especially if it is new in onset and persistent, should be reported to a physician so that proper evaluation and treatment can be initiated.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is the best way to diagnose an adhesion in the small bowel? Should you use small bowel X-Ray series, CT Scan, MRI, and/or colonoscopy?
A: Small bowel adhesions are commonly seen in anyone who has undergone prior abdominal surgery, but adhesions cause difficulties only in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. Colonoscopy cannot generally identify small intestine adhesions because the procedure inspects only the inside and not the outside of the large bowel. Imaging studies such as MR enterography and CT enterography are usually more accurate than a small bowel series in their evaluation of the small intestine. However, none of these tests can easily see adhesions. Instead, they identify the consequences of these adhesions such as an abrupt angling or abnormal dilation of the involved bowel. One benefit of MR enterography over the other modalities is that no radiation exposure is required for the test.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is ulcerative enterocolitis and what part of the small and large intestine is involved? Is it more extensive or serious than pancolitis?
A: The inflammation associated with ulcerative colitis typically begins in the last part of the large intestine and then spreads up the bowel to sometimes affect the entire colon; this complete or near-complete involvement of the large intestine is called pan-colitis. Ulcerative colitis does not usually impact the small intestine unless it is limited to the last few inches in a condition called backwash ileitis. More extensive inflammation of the small intestine is called enteritis and it is not seen in patients with ulcerative colitis unless they have another disorder such as an infection superimposed on their existing ulcerative colitis. On the other hand, patients with Crohn’s disease can demonstrate inflammation of both the small and large intestine and this is referred to as enterocolitis.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: Should recurring C Diff in a child be a cause for concern? Say recurring 3 times in 2 months and after taking antibiotics?
A: Clostridium difficile is a bacteria that can cause inflammation and diarrhea in pediatric or adult patients without or with inflammatory bowel disease. Although proper studies are still lacking, some evidence suggests that people with inflammatory bowel disease are at greater risk for infection with Clostridium difficile than those without disease. The initial treatment of Clostridium difficile in children can fail more than one-half of the time, regardless of the treatment. This failure might occur because the bacteria is resistant to standard therapy or the patient is a carrier of the bacteria. Carriers can be asymptomatic for months without treatment of the bacteria, but it is unclear whether they will remain so if immunomodulator or biologic agent therapy is initiated for the inflammatory bowel disease.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: My daughter has Crohn's disease and she won't have a bowel movement for a couple of days and then when she does it is very painful and hard to get out. The stool is soft in consistency and is sometimes flat. We have tried laxatives and stool softeners but they just seem to make her go more often, but still painful and difficult to get out. She had normal bms after an increased dose of infliximab, but that only lasted 2 1/2 weeks (tests show no antibodies to the biologic). What can we try?
A: Crohn’s disease can affect any portion of the intestine from the roof of the mouth to the skin around the bottom, which is also known as the anus. Difficult or painful bowel motions can be caused by disease-related disorders such as narrowing, fissures, or ulcers of the anus. Infliximab can be beneficial in treating some patients with disease of this area. Any patient with these symptoms should generally be thoroughly examined and this examination must frequently occur in the operating room because it is too uncomfortable to perform in another setting. Further treatment would be based upon the findings of this examination.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I have been on adalimumab for 2 years with great success. During this time I have gained about 30 lbs, been diagnosed with high blood pressure, and high triglycerides. Are these side effects of the adalimumab?
A: Adalimumab has been extensively used for a variety of conditions and its side effects are fairly well described. Comparing patients receiving adalimumab to those not getting adalimumab, high blood pressure occurred in 5% of people receiving the medication and 3% of the others. High lipids were seen in 7% of patients treated with adalimumab and 5% of those not using the medication. Excessive weight gain is not typically seen as a direct result of the drug.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I am 64 years old and have had Crohn’s/Colitis for 40 years. I have had a flare and am now taking 6MP with 5 mg prednisone. I feel that I am stable. Are there long term effect of continued use of either the 6MP or the 5 MG of prednisone?
A: Azathioprine and 6-mercaptopurine (6-MP) are immunomodulators that are chemically similar and generally used to maintain remission in Crohn's disease as well as ulcerative colitis. Both medications have a slow onset of action (3-6 months for full effect). Reported side effects associated with their usage include diarrhea, headache, nausea, and vomiting. Exchanging the drugs can occasionally reduce some of these reactions. Fever, joint pain, liver inflammation, mouth sores, and skin rash are unlikely to be affected by switching the medications. Less common side effects include inflammation of the pancreas, also known as pancreatitis, and bone marrow suppression that may increase the risk of infection or serious bleeding. Because of these effects, blood tests should be frequently performed to measure the impact of these drugs on the bone marrow, kidneys, and liver. Some reports have described an increased risk of lymphoma, which is a type of cancer affecting the lymph glands. However, other research has shown that for most people the extra risk is small and outweighed by the potential benefits gained from treatment. Corticosteroids similar to prednisone are naturally present in the body, but the higher than normal dosages commonly needed to control inflammation can produce undesired effects. These side effects usually disappear when the medication is reduced to normal dosage levels (Prednisone 5 mg daily) or discontinued. However, the impact of long-term steroid usage is sometimes irreversible and these changes include cataracts, diabetes, easy bruising, and glaucoma. Furthermore, the body’s natural ability to produce hydrocortisone might fail to recover when the medication is stopped after many months or years of steroid treatment.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn’s just a few months ago. I took prednisone first then mesalamine, but am still experiencing symptoms. The doctor now wants to move me to biologics, but I want to move more slowly and first try increasing the dosage of the mesalamine. If that doesn't work, what would the next step be?
A: Patients with Crohn’s disease can be managed with multiple classes of medications including antibiotics, aminosalicylates (such as mesalamine), corticosteroids (such as prednisone), immunomodulators, and biologic agents. With the exception of corticosteroids, most of these medications can be prescribed on a long-term basis. Some clinicians prefer to start patients on the most mild of medications and escalate the potency of treatment only if the disease fails to respond to therapy. Others begin with the strongest drugs and then transition to lesser medications when the disease has been adequately controlled. If your disease was initially managed by a corticosteroid, but you relapsed while on an aminosalicylate, you would be a candidate for corticosteroids or biologic agents. Immunomodulators would be likely used in combination with the corticosteroids so you could be eventually weaned off the steroids and continued on the immunomodulators in order to maintain the steroid-induced remission. Disease remission achieved with biologic agents can be maintained with long-term biologic agent usage or you can be transitioned to less potent medications for long-term therapy.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
September 2012
Q: I have Crohn's and the last couple of weeks I have been using the bathroom more than 15 times a day, and have hardly eaten anything. I have not lost any weight, and all my blood work has come back normal. How is that possible with the lack of food and the constant diarrhea?
A: There are a number of possibilities. Crohn’s disease may be active despite normal blood tests. Some testing may be necessary to determine if the Crohn’s disease is active. Infections can also cause diarrhea. Testing may need to be done in this regard, particularly stool tests. Medications may also cause diarrhea. Have you started any new medications? Have there been any dietary changes? It will also help your doctor to know what you bowel movement frequency was before this worsening. In summary, there are a number of possibilities that your doctor may need to consider.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I was diagnosed more than 10 years ago and have ulcerative proctitis. I find I don't know when it is appropriate to go to the emergency room. What symptoms are of concern? When should I get emergency care for?
A: Generally, proctitis should not cause symptoms that require emergency room evaluation. Small volume bleeding from the rectum and urgent bowel movements can usually be evaluated electively at your doctor’s office. If you have large amounts of bleeding, particularly if you feel lightheaded, or if severe abdominal pain occurs - this is an indication that something different from the proctitis is happening and going to the emergency room is appropriate. If you are not sure, call your doctor’s office or clinic.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: How common is the use of methotrexate combined with infliximab to treat children? My nine year old just had small bowel resection due to a stricture - previously was on 6mp. Do studies show that methotrexate significantly decreases the chance of developing the antibodies to infliximab? Does the benefit outweigh risk?
A: Methotrexate is not used commonly to treat children with Crohn’s. 6MP is much more commonly used. Methotrexate does decrease the formation of antibodies to infliximab, probably increasing the effectiveness of infliximab. The benefits versus risk depend on the individual situation and would be best discussed with a pediatric gastroenterologist.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: Is it okay to continue medical treatment of IBD during pregnancy?
A: Yes, most treatments can and often should be continued during pregnancy. This includes mesalamine (5-ASA), azathioprine/6MP and biologics such as infliximab, adalimumab and certolizumab. Most IBD doctors feel the risk of IBD flare during pregnancy, if medication is stopped, is worse than the risk of the medications themselves. There are, of course, some medications that should not be taken during pregnancy. Discuss your treatment with both your IBD physician and your obstetrician. They should communicate with each other if there is disagreement. There is also a discussion of pregnancy issues at CCFA.org.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2012
Q: I'm a young adult that has been living with UC for 15 years. School is starting soon-and I'll be running 14+ hour days during the week. Do you have suggestions for food plans/diets? I've been trying to do a low-residue diet.
A: Stick with the diet that works for you. If you generally do a low residue diet then that should probably be continued. Eat has healthy as possible and don’t forget time for rest. Life does not necessarily become less busy when you are done with school. Don’t forget to take a multivitamin, calcium and vitamin D. Take a look at some of the diet tips at CCFA.org.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: My 20 year old son was diagnosed with Crohn’s about 2 months ago. He was prescribed budesonide which he started 2 weeks ago. He has had cold chills since he has been taking the budesonide and had one episode where his hand and inner calves started tingling. He also said that his lips felt funny. It only lasted about five minutes. Is this something we should worry about or are these side effects of budesonide?
A: These do not sound like symptoms that are definitely from budesonide, but everyone has different reactions to medication. If these are side effects from the budesonide, the side effects should go away when the medication is stopped. Budesonide is a steroid, but unlike prednisone (another stronger steroid) it is rapidly eliminated from the body so its effects on the body are very low (although there is some effect). Even though the side effects of budesonide on the body are much lower that with prednisone, it is a steroid – so it is often not used long term. Your son should discuss the long term plan with his doctor. A discussion of steroids, and steroid side effects, can be found in the medication section at CCFA.org.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I have been wearing a pouch for 16 years. I have had pain in my lower abdomen for about 6 months. I had a colonoscopy last week and the surgeon found that much of my colon and rectum have been sealed or obstructed over the years, which is what is causing my pain. Will I have to get my active colon and rectum removed or are there other options?
A: This is the sort of situation which has issues specific to the individual patient so there is really not any general advice that can be given. Discuss your symptoms and questions with your surgeon.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
June 2012
Q: I had a resection in February and was told I have Crohn's. I'm taking 1.875 g a day of mesalamine for remission. My question is why am I having pressure in the center of my chest? I know it is not heart related. I have taken esomeprazole magnesium and other meds with no relief. What can be the cause? Is it from the Crohn's? I am also having back pain in the middle of my back all the time.
A: You need to address this further directly with your doctor. In general, mesalamine is ineffective for the treatment of Crohn’s disease and for prevention of post-operative recurrence so better therapy may be needed. Patients should get repeat colonoscopy around 6 months after surgery to see if the Crohn’s disease has come back and increase treatment based on that. Complications from surgery such as abscess or scarring can cause back pain. Discomfort can also be from heartburn, recurrence of Crohn’s disease and bacterial overgrowth.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: What are diseases other than IBD and intestinal TB that cause chronic bowel ulcers? My 30 year old son has had ileum ulcers since 2008, which have spread to other parts of the digestive tract causing diarrhea and no appetite. He has been treated by 3 GI specialists since 2010 and has taken all medication for Crohn’s and TB, but got worse.
A: Ileal ulceration is a finding seen on endoscopic evaluation (such as colonoscopy or enteroscopy). Stool studies, biopsies of the abnormal region, and blood testing may be needed to determine the cause. There are several potential causes which include Crohn’s and tuberculosis (TB), but also include several other diseases. These diseases include, but are not limited to infections (parasites, bacteria, viruses such as cytomegalovirus in immunocompromised individuals), diseases of immune-dysregulation (eosinophilic gastroenteritis; vasculitis such as lupus and polyarteritis nodoum; vascular ischemia, and tumors (such as lymphoma)). Following up with a GI specialist to understand which diseases have been evaluated for is reasonable. A small percentage of Crohn’s patients are also non-responsive to medical therapy and may require surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there any evidence that anabolic steroids can cause and/or inflame ulcerative colitis?
A: There is no data to state whether or not anabolic steroids cause or worsen ulcerative colitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I was diagnosed with mild Crohn's (indeterminate) 10 years ago during a hospital stay. After treatment with mesalamine (on two different occasions), the off-on again symptoms lessened within about 2 years. I'm no longer taking meds, but have constant problems with bowel consistency. Could it be I was misdiagnosed? Without currently experiencing symptoms, can any test definitively diagnose IBD?
A: A diagnosis of IBD can be made definitively, but patients may not have all the findings at the time of presentation to make a definitive diagnosis. Findings on testing may evolve over time and may require repeat testing to make a diagnosis of IBD. The findings on endoscopic evaluation (such as colonoscopy/endoscopy) along with the findings on biopsies are the gold standard method for diagnosis. When it is difficult to know whether someone has Crohn’s disease or ulcerative colitis, there are also blood tests that can help differentiate the diseases. Clinical remission does not always equal endoscopic remission, so it may be worthwhile repeating testing if the diagnosis was not certain from the start. Additionally, having Crohn’s or ulcerative colitis for more than 8-10 years may increase the risk for colon cancer and colonoscopy (with biopsies) is the recommended screening test.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: What are my treatment options (types of medicines) for IBD?
A: The specific medical treatment options for a patient depend on the type and severity of inflammatory bowel disease. For mild/moderate disease severity, 5-aminosalicylates (5-ASA) are local anti-inflammatory medications which can be given orally or by rectum. When disease is moderate to severe immunosuppressants are used. Immunosuppressants used to treat ulcerative colitis or Crohn’s disease include corticosteroids (such as prednisone), 6-mercaptopurine or azathioprine (pro-drug of 6-mercaptopurine), methotrexate, and biologics (infliximab, adalimumab, certolizumab, natalizumab). Corticosteroids are used for flare-ups of IBD and as a bridge until non-steroid immunosuppressants work. Which medical therapy is used also depends on whether one has Crohn’s disease or ulcerative colitis. The medical therapy that is right for you would need to be discussed with your doctor. Additional information about these medical therapies is available on the CCFA website.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there any information on the effect of over-the-counter fitness supplements on ulcerative colitis? Is there a resource I can go to for more information on these supplements?
A: The real issue is what are the ingredients of the fitness supplement? If it includes lactose or non-digestible sugars such as sorbitol or mannitol, it may make diarrhea and abdominal discomfort symptoms worse. Too much of certain vitamins and minerals may lead to toxicity, such as vitamin A and iron but this may not directly affect ulcerative colitis. If you need to obtain more specific information about a supplement than what the label provides, then you will need to contact the manufacturer of that specific product. Contact information for the manufacturer may be found directly on the label. The FDA does not collect information about all supplements since FDA approval is not needed for the supplements to be sold. By law, dietary supplements need to be safe and data is collected by the FDA on supplements with adverse events reported.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I have a simple perianal fistula that is responding well to adalimumab. However, I believe it has been causing constant headaches and sinusitis for three months. I have rhinitis, so it could have pushed things to a tipping point. I skipped a shot and the issued improved somewhat, but after about 4 weeks the fistula fired up. I re-commenced and within a few days the fistula improved. Are there less sinusitis problems with other biologics?
A: All the anti-TNF therapies (adalimumab, infliximab, certolizumab) used to treat inflammatory bowel disease can increase risk for sinusitis. You may need to see your primary care or an Ear/Nose/Throat specialist to discuss methods of treating and preventing sinusitis. Another option would be to treat you with a different class of immunosuppressants, such as immunomodulators if it is feasible in your case.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I am having infliximab injections. The 5th one is next month. I have lost almost all of my hair and my scalp and arms are full of sores. Is this a side effect of the medicine? Will the sores go away and will the hair grow back?
A: Infliximab may induce a rash (such as folliculitis and psoriasis) and there are case reports of infliximab inducing hair loss by a psoriasis like syndrome. Some patients with psoriatic like alopecia (hair loss) and rash have responded to topical medications without stopping infliximab. You should be evaluated by a dermatologist to determine the reason for the rash and hair loss in conjunction with your gastroenterologist.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I am currently taking certolizumab shots and was previously taking adalimumab. Both seem to have a side effect of an uncomfortable and dry mouth, not tasting, and poor appetite. Is this a common side effect of these medications?
A: This is not a common direct side effect of anti-TNF therapies (certolizumab, adalimumab, and infliximab). Although, you may need to be evaluated for infections that anti-TNF therapies may predispose you to, such as thrush (yeast infection of the mouth).
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I was weaned off of a cycle of prednisone about two weeks ago and have had no flares for about a month or so. This past weekend I began flaring and am now in a full on flare. Is there something more I can take or do other than my 4 prescribed mesalamine? Or recommended meals/drinks that will ease the pain? I just feel that there has to be something else that will help me other than prednisone.
A: There are several non-steroid medications aside from mesalamine. Which medications to consider depend on whether you have Crohn’s or ulcerative colitis. The non-steroid medications take time to work and will usually require bridging you to these therapies with steroids. During times of flare ups, low fiber and lactose free diets are recommended to reduce symptoms. Also recommend during flares: avoidance of aspirin and ibuprofen based products and, if you have Crohn’s disease, smoking cessation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there a risk in having plastic surgery if you have been on immune suppressants or biologics? I have not had infliximab in 4 months, I stopped taking azathioprine three months ago, and I also took steroids but have tapered off. Is it safe to have any surgery after all this medication?
A: The risk of anti-TNF therapies (such as infliximab, adalimumab and certolizumab), 6-mercaptopurine or its prodrug-azathioprine, and corticosteroids have been assessed for postoperative complications in several studies. The risk of postoperative complications with anti-TNF therapy is not clearly increased based on these studies. The same is true for 6-mercaptopurine/azathioprine. Whereas for corticosteroids, if at the time of surgery it is greater than 20mg a day it may increase risk for complications. It takes at least 4 half-lives for minimal drug concentrations to remain in the blood stream. Based on a half-life of 7-9 days with infliximab, infliximab exposure 4 months ago should not affect surgery. The half life of azathioprine’s active metabolite (6TGN) is between 3-13 days, so stopping azathioprine 3 months ago should not have an effect. The half of prednisone is 3-4 hours.
ANSWERED BY:
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I've read that people with ulcerative colitis should be on a gluten free diet. Is this true?
A: Gluten is not a known stimulant of ulcerative colitis or Crohn’s disease. Some individuals have gluten intolerance, which causes gastrointestinal symptoms such as bloating and abdominal discomfort. So if a patient also has ulcerative colitis the gluten intolerance may add to symptoms already present.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: My primary care doctor has recommended that I use a hormonal form of birth control--either a low-dose estrogen pill or the levonorgestrel-releasing intrauterine device (IUD). This form of IUD is not recommended for people with suppressed immune systems (I am on azathioprine and infliximab, and tapering off of prednisone). However, a recent CDC publication gave the IUD a safer rating than the pill for women with IBD (http://1.usa.gov/bQnOfb). Which form of birth control is safer for me to take?
A: The difference noted by the CDC MMWR publication refers to the risk of blood clots with the use of contraceptives in inflammatory bowel disease patients. Moderate to severely active inflammatory bowel disease increases the risk for developing blood clots. Contraceptives with higher hormonal levels (in the pill, patch, or ring) also are associated with an increase risk for blood clots. In theory, combining oral contraceptives and moderate-severe inflammatory bowel disease may increase the risk even more for developing blood clots. There is no published study as of yet that answers this question. If your disease is not very active, then a pill still may be a reasonable option. You would still need to discuss with your primary care provider or gynecologist if there are other reasons specific to your medical history that would help guide which type of contraceptive to use.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2012
Q: Why do I have so many body aches and pain that often times will not permit me to walk or stand straight up? I seem to be falling a lot as well.
A: There are a number of things that could be going on to cause your symptoms and you should discuss this with your doctor. Sometimes IBD can be associated with arthritis and this would be at the top of my concerns. If that is the case your doctor may want to send you to see an arthritis specialist and/or choose medications for your IBD that will also help treat arthritis. Arthritis associated with IBD (called spondyloarthropathy) can affect various joints, including the back and pelvis joints and/or the large or small joints of your extremities.
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March 2012
Q: In researching the benefits of aloe supplements, I have found contradicting information. Can you explain what the potential benefits and/or risks are?
A: There is no good data to date to show that aloe benefits colitis. Moreover, there are many forms of aloe and some can even be harmful to the colon. Furthermore, it is difficult to know which of these forms you are getting when you buy it. Studies are ongoing in animals, but at this point it is not a recommended treatment for colitis.
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March 2012
Q: My daughter has Crohn’s disease and recently began taking colesevelam and immediately started having blood in stool. Is this a side effect of the medicine?
A: Colesevelam is a medicine used to reduce cholesterol, but can also be used sometimes to treat diarrhea. Blood in the stool is not a commonly reported side effect of this medication. First thing, she should see her gastroenterologist to discuss the symptoms and make sure this is not related to active Crohn’s disease.
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March 2012
Q: I completed my first half-marathon in December with Team Challenge and would really like to do another. What is recommended in terms of nutrition supplements during a long run for someone with Crohn's? It seems that even with the gels and chews available, I'm just not able to keep my energy up.
A: For long distance running with Crohn’s, the most important part is to be sure you are keeping up with your hydration, both before race day and on race day. Every individual’s needs are different and dependent on their fluid losses (which includes most importantly sweat and stools (diarrhea)). An average recommendation (for people without bowel disease) is to drink 3-6oz every 15-20 minutes during the run (about 1 cup of water every other mile). For a starting point, try to estimate your sweat rate (weigh before and after a good hour run and then convert this to ounces/hour of loss). You will need to be replacing those losses plus adding more for any diarrhea and more if it is hotter. In regards to carb intake (gels and chews), be sure you take something pre-race, and then at least 45 minutes into the run, to help prevent losing steam early on. You will have to adjust this to your own body and may need to take more of these then other people given your Crohn’s. Try out various formulations to see what works best for you. Make a hydration and nutrition plan for race day beforehand and talk it over with your doctor to further tailor it to the specifics of your disease.
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March 2012
Q: I am running my first half marathon in less than 2 weeks. I’ve been training since November, but I’m having lots of issues and some days it’s just impossible to run - not because of the pain, but because it’s just not in me to run that day. I know that most people are supposed to carb load before a race, but what should someone with Crohn’s do to prepare diet wise?
A: First things first, in regards to poor energy, be sure to talk with your doctor to ensure that your Crohn’s disease is adequately treated. Next, nutrition during training for long distance running is important both for people with and without Crohn’s disease. You should be eating a healthy, balanced diet in addition to being sure you are staying adequately hydrated. Carbs are important in all your meals to provide the energy stores you need for running and protein is especially important post-race to help repair your body. On race days, you can try to eat something light (like a banana or a bagel or something you know you digest well) before the run. It is also important with long runs to consume snacks during the run. There are a wide variety of energy supplements (carbs) that come as gels, chews, or bars that you can take during the run. You want to be sure to consume these early on in the run, and then periodically throughout (make sure you don’t wait too long and lose steam). Many recommend these every 30-45 minutes during the run. You will have to try various products and see what works best for you. And again, being sure you are adequately hydrated is a very important part of this as well.
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March 2012
Q: I have been on adalimumab since 2009 and it has been working to keep my Crohn's under control, but I have very bad perianal disease which the adalimumab does not seem to reach. My doctor wants me to start taking adalimumab every week, but I was wondering if there were any other options to help with the perianal disease.
A: Medical treatments with potential efficacy for treating perianal disease include antibiotics, azathioprine and 6MP, biologics like infliximab and adalimumab, and cyclosporine and tacrolimus. Depending on the specifics of your disease, surgical treatments are a consideration as well, and you should discuss this with your doctor.
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March 2012
Q: My son was diagnosed in 2009 with Crohn's disease and is now 14 yrs. old. He is currently taking a biologic. Has there been any research as to the chemical reaction of the disease and/or biologics and depression? I realize having a life long illness takes its toll, but I am wondering about the chemical reaction of having an inflammatory disease.
A: There is no data that I am aware of that has linked the mechanisms (or “chemistry”) of inflammatory bowel disease to causing depression. However, depression is very commonly seen in patients with IBD given the lifelong illness it causes. CCFA has many resources available regarding coping and emotional factors. Be sure to contact our Information Resource Center (888.694.8872) to learn more and check out our educational brochures and fact sheets at http://www.ccfa.org/info/brochures.
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March 2012
Q: Is there any research on the safety of taking growth hormones while on a biologic?
A: There have been no controlled studies looking at the safety of taking human growth hormone while also receiving a biologic.
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March 2012
Q: I am currently taking mesalamine for my Crohn's. My husband and I decided to have children and I am currently 5 weeks pregnant. My gastroenterologist told me that it was safe to take my meds while pregnant but when I met with my gynecologist she said that it is not considered safe. What do research studies on this find?
A: In general, mesalamines are considered safe during pregnancy. With that said, olsalazine and asacol contain dibutyl pthalatae (DBP) in the coating. Neither of these medications has been associated with birth defects, but DBP has been associated with congenital anomalies in animals. With that said, it is even more important to consider the effects of a flare if these medications are stopped. Active disease during pregnancy can increase the risks of pre-term delivery and low birth weight of the infant. It may also impair the ability of the mother to care for the infant once it is born. Plus even stronger medicines may be required to get mom back under control if she flares.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2012
Q: My 2 1/2 yr old son was just diagnosed with "ulcerative chronic active colitis" but they said it is not being diagnosed as "ulcerative colitis." What is the difference?
A: There is no difference in ulcerative chronic active colitis and ulcerative colitis. They imply the same thing.
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February 2012
Q: My 16 year old daughter was diagnosed 2.5 years ago with UC. When treating a sore throat/ear infection what antibiotics are safe as to not upset the gut?
A: All antibiotics can upset the gastrointestinal system, in part by changing the gut’s flora, the organisms that reside in the gut. For this reason, antibiotics should be used judiciously, such as when a treating physician is reasonably certain that there is a bacterial infection, as opposed to a viral infection.
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February 2012
Q: Is IBD something you're born with or can you develop it later in life? I recently went to the hospital for severe abdominal pain and diarrhea that lasted 3 weeks. I was dehydrated, but the pain and cramps have persisted for the last 3 months. It bothers me more at night. The only symptom I haven't had is blood in my stool. Should I talk to a GI?
A: Crohn’s disease and ulcerative colitis (collectively IBD) are acquired in life, though their development is under the influence of genetic, as well as environmental factors. Most patients who develop IBD during their lives do so in their late childhood and early adult years, though it may become apparent and become diagnosed any time during life. With your symptoms, I think it would be a good time to schedule an appointment with a gastroenterologist. Your symptoms may or may not be a function of Crohn’s disease or ulcerative colitis.
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February 2012
Q: I recently visited a new doctor and he told me that smoking will be beneficial. Are there any studies showing that smoking will be beneficial for patients with Ulcerative colitis?
A: Beneficial is probably too strong a word, and no one has formally studied the direct effect of smoking on the course of ulcerative colitis, though a questionnaire-based study in the Netherlands suggested the smokers who had ulcerative colitis and continued had fewer hospitalizations than those who quit. Nevertheless, the net effect of tobacco smoke and its association with heart disease, stroke, chronic lung disease and numerous cancers is too great to ignore, and smokers should quit and be treated aggressively for their ulcerative colitis.
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February 2012
Q: I was diagnosed 5.5 months ago. I started off with prednisone and two months ago began azathioprine and was tapered off prednisone. I'm having pain in different parts of my abdomen and it varies from mild to medium. Is this due to no more steroids? Will it settle down or do I need some other medication?
A: Not everyone responds to azathioprine and there is a chance that what you’re feeling is Crohn’s, though there is a possibility that it is a function of prednisone. It is best to check this out with your gastroenterologist.
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February 2012
Q: I was put on prednisone a couple of days ago for my Crohn’s disease; my face is very flush--is that a normal side effect?
A: There are a number of side effects to prednisone—and facial flushing is among them. This is likely a side effect you can push through, but it’s worth discussing it with your doctor. Many IBD experts do their best to minimize prednisone exposure, favoring medications such as thiopurines, methotrexate, and anti-TNF medicines such as infliximab, adalimumab, and certolizumabpegol.
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February 2012
Q: I was diagnosed with Crohn’s in 1998 and was recently diagnosed with perianal fistula confirmed via MRI. I did have a small bowel follow through, which showed no other fistulas and had a colonoscopy that showed no active Crohn’s. I am offered now to start a biologic. Does this seem like the best option or should I investigate others?
A: For persistent fistulas that are draining, the biologics are excellent medicines, but others have been demonstrated to close fistulas also, albeit in less well designed studies. These primarily include thiopurines (6-MP or azathioprine) and cyclosporine; an antibiotic, metronidazole, can dry out fistulas, but they don’t heal very well.
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February 2012
Q: I was 19 when I was first diagnosed with Crohn’s. I have had 2 resections. As time went on I was diagnosed with IBS and now I also have diverticulitis. How do I deal with diet? Crohn’s is low fiber and IBS and Diverticulitis is high fiber.
A: There is a rather obvious link between diet and gastrointestinal illnesses. Unfortunately, it is not a very well understood link at this point in time. What’s certain is that the “wrong” diet will not result in any prolonged negative effects. That being the case, you should feel free to experiment with low or high fiber diets, with the assistance of an expert, until you find the one that’s right for you. No matter the choice, you won’t harm your Crohn’s, IBS, or diverticulosis.
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February 2012
Q: My son is 14 yrs old and had his colon removed a couple weeks ago. What can I feed him to put some meat on his bones? He's 5ft 6in and only weighs 105lbs. The doctors tell him he needs to really concentrate on keeping hydrated so he drinks lots of water and Gatorade, but those things fill him up so he isn't hungry.
A: A diet high in protein calories is the best thing for him at this time. It would likely be advisable for him to meet with a nutritionist to get a detailed description of how to accomplish this, but all calories are good calories and high protein calories are best.
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February 2012
Q: I have Crohn's disease and also have back issues (herniated discs, tarlov cyst, spinal stenosis, etc), plus nerve damage. I am in the process of applying for SSD. How can I explain my inabilities?
A: The SSD application should allow for including information about functional limitations related to both your back and your gut. Supporting documentation from your doctors should help. CCFA has sample appeal letters that you or your health care provider can use. Visit the Community Resource Center (http://www.ccfacommunity.org/ResourceCenter.aspx) for more information.
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February 2012
Q: If my son has Mesalamine-Induced Acute Intolerance Syndrome, what is the next step for him to control his colitis? He is 16 and was diagnosed in Oct 2011 and has taken 4 mesalamine/day since. Recently he's complaining of a severe stomach ache and he has developed a rash on his face.What other options are there?
A: It is possible that he might do okay with rectally administered mesalamines. If he proves intolerant to these, then thiopurines and/or infliximab might be helpful.
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January 2012
Q: I have Crohn's disease. My husband and I want to start a family. Is it likely that our children will develop Crohn's disease?
A: Studies have shown that Crohn’s can run in families. If you have Crohn’s, the chances of one of your children developing Crohn’s are about 1 in 10. At this point, there is no genetic testing available to inform this estimate.
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December 2011
Q: I was diagnosed with ulcerative colitis in 1993 and have a family history of colon cancer. How often should I be getting a colonoscopy? How many years does colorectal cancer take to advance past the early more treatable stages that can be caught in a colonoscopy?
A: The risk of colon cancer in ulcerative colitis depends on multiple factors. Those with disease of the entire colon have a greater risk than those with disease limited to their left colon or rectum. The risk for cancer starts 10 years after the diagnosis, and we think that active inflammation also plays a role in increased risk. A family history of cancer would include first degree relatives under the age of 60 or multiple second degree relatives under the age of 50. You should speak with your gastroenterologist about your specific risk factors in regards to how often you personally need to have a colonoscopy. We believe that the cancer in ulcerative colitis is more aggressive, i.e. grows faster, than cancer that occurs outside the setting of ulcerative colitis, so having colonoscopy in the recommended time frame with attention to a good prep is important.
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December 2011
Q: Is it common to have dry eyes and/or roscia if you have Crohn’s disease?
A: There are several different other autoimmune conditions that one can get if you have Crohn’s disease. Dry eyes and rosacea are two of them. But these can also be side effects of medications.
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December 2011
Q: I’ve had proctosigmoiditis for 25 years and am on 4800mg of mesalamine. Six weeks ago I started having small amounts of mucus and blood in my morning bowel movements. Are small amounts of blood common?
A: Bleeding is a common symptom of active proctosigmoiditis but can also be from hemorrhoids or fissures. If you don’t have other symptoms of active disease, it would be important that that you have the source of the bleeding checked out as it is unlikely the proctosigmoiditis.
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December 2011
Q: I have had a pouch since 1997 because of UC surgery. For the last 3 years my pouchitis has become so chronic that we have tried all antibiotics (resistant now), probiotics and budesonide and now I am on prednisone. It seems that things continue to worsen. What can I do to retain my pouch?
A: It might be that the chronic pouchitis is really Crohn’s disease since you are requiring prednisone to treat it. You should talk with your health care provider about this possibility, as treatment for Crohn’s disease may restore the health of your pouch.
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December 2011
Q: What are strictures and obstructions and how do you know if you have one? Will they always be there until surgery is done or can they heal some with medicine and/or diet? Can you get tested for it and who should?
A: A stricture is a narrowing of the intestine that may or may not cause any symptoms. Strictures can be narrowing from active inflammation (sort of like when your eye can swell shut from pink eye) or from scar tissue. Narrowings can cause obstruction if food or stool is unable to freely pass through this point. Symptoms would include pain, nausea, vomiting and abdominal distention. If in the colon, a stricture can cause constipation. Treatment depends on if the stricture is inflammation or scar tissue, as there are no medications that treat built up scar tissue. Testing for strictures include x-rays and sometimes colonoscopy.
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December 2011
Q: I had a colonoscopy several months ago and had a severe infection in my colon and was treated for this. At my follow-up, I had to be hospitalized due to severe pain and had a CT done and was told had Crohn's. My GI doc still has doubts if it is Crohn's. What else could it be? I had ulcers and inflammation in colon/small intestine.
A: There are many things that can cause inflammation and ulcers in the colon, including infection, medications, Crohn’s disease, certain kinds of cancers, and damage from lack of blood flow. Biopsies from the colon often can differentiate between these different causes. If there is doubt, having more than one expert examine the biopsies can be helpful.
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December 2011
Q: I have left-sided Ulcerative Colitis. How long does it take to go into remission with biologics? I am on my third infliximab infusion and still have bleeding and pain. Should I ask my doctor to take other tests to determine the cause of this ongoing symptoms?
A: Everyone responds to therapy a little differently. We usually allow 8-12 weeks of infliximab therapy to determine if there has been a response or not. Doing a flexible sigmoidoscopy or colonoscopy can tell if the infliximab is making a difference or not.
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December 2011
Q: I'm recovering from j-pouch surgery, and am wondering what I can do for the incontinence I'm experiencing. It's been about 1 1/2 weeks.
A: Incontinence can occur for several weeks to months after a pouch surgery. The anal canal must get used to the new pouch. Medications like loperamide as well as fiber can help decrease the number of stools and help to thicken it up.
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December 2011
Q: Is it possible to have internal rectal scar tissue even though my biologic is "working" in preventing diarrhea from inflammation?
A: The body’s response to inflammation is to try to heal it by forming a scar. It is not uncommon in a patient with Crohn’s disease to develop scarring in the rectum or anal canal even when the rest of the colon is in remission and healed.
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December 2011
Q: I have not had a flare up or problem for over 6 years now and haven't been on any medication for 14 months. Can I donate plasma?
A: Yes, you should be eligible to donate plasma.
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December 2011
Q: I have painful gas daily. Can I take simethicone or beano for this?
A: Beano (the enzyme that helps break down the sugar found in many types of beans) literally only works on breaking down arabinose, which is the sugar in beans. If you do not eat beans, then Beano will not help you. Simethicone breaks up gas bubbles that are in the stomach, but if the gas has already reached your intestine, then simethicone will not help either. Simethicone however is certainly safe to take.
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December 2011
Q: I feel like my Crohn's is always worse in the fall and winter, but it sounded crazy to think that the seasons impact the disease. Then I read that there is a link between vitamin D deficiency and Crohn's Disease. Is there any validity to this claim?
A: There is very good literature to suggest that some patients note a strong correlation to the season so your observation is not crazy. We think that the lack of vitamin D in Crohn’s patients can contribute to ongoing inflammation and that treatment with vitamin D supplements to restore normal levels can help disease symptoms.
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December 2011
Q: I have Crohn's and polycystic kidney disease and am about to go on dialysis. I would prefer to go on peritoneal rather than hemodialysis, but my MDs and I are hesitant because of the need to invade the abdomen. Is there any medical evidence that Crohn's patients should avoid peritoneal dialysis? What do other Crohn's patients in this situation do?
A: Since Crohn’s disease affects all the layers of the bowel wall it is easier to form fistulas and develop abscesses. Crohn’s disease treatment also involves immunosuppressants. Any process that introduces foreign material into the abdomen can serve as a stimulus for infection or possibly a fistula and peritoneal dialysis is likely to be much riskier than hemodialysis.
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November 2011
Q: My son underwent a successful total colectomy 10 yrs ago for the treatment of colitis. He has become obese and unable to eat many of the typically recommended foods (high fiber veggies, raw fruit). What recommendations do you have for a low fiber diet geared to weight loss?
A: For anyone that needs to lose weight the recipe is always the same. Look at total calories in the diet and especially the intake of sugar and fat. I understand the difficulty with consuming raw vegetables and fruits; however, cooking the vegetables makes them more tolerable and just as beneficial in terms of nutrients and weight loss success. Prepare vegetable soups and purees and do not add a lot of fat. When trying to lose weight the amount of fruit in the diet should be limited to 2 per day. Try cooking the fruit, like baked apple as it becomes more digestible that way. Your son can be successful with weight loss if he is cautious with the total calories he consumes and takes some time to be active. Keep vegetables and fruits cooked and eliminate sugar from the diet.
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November 2011
Q: Has there been any links shown between improved condition and a cessation of wheat in the diet?
A: There have been very few studies that have shown people with IBD do well on a wheat free diet. However, those people who have been tested for wheat sensitivity or intolerance and have a proven inability to digest it can benefit from this restriction. This situation is not common and most patients with IBD tolerate wheat products just fine. Be careful with eliminating excessive amounts of food from the diet. Remember that patients with IBD need a balance of nutrients and limiting wheat can cause significant reductions in total calories, which in turn can lead to caloric deprivation. Truly evaluate the need for this kind of restriction before imposing it upon yourself. Going to a reputable allergy or immunology center would be recommended before major dietary changes like this are taken on.
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November 2011
Q: I have had ulcerative colitis for 31 years and had my large intestine removed 3 years ago. I am severely lactose and dairy intolerant and my Vitamin D count is very low. My doctor gave me a script for Vitamin D but it made me so sick I stopped it. Can it be because I have no large intestine to absorb this vitamin? What do you suggest? I can only eat certain foods, no veggies or fruits.
A: Vitamin D3 is a critical micronutrient that assists in the absorption of calcium and allows for many other bodily functions that are imperative for maintaining health. Recently vitamin D3 has been implicated in reducing the risk of certain cancers and reducing inflammation in the body. Remaining deficient in this nutrient is not beneficial and can lead to other disease states. It is very important that you bring your body back to balance and make sure all vitamins are at recommended levels. As for getting enough vitamin D3 I recommend the following: 1) Consume more oily fish like salmon and tuna; 2) Try drinking more fortified orange juice and almond or soy milk (these also have a lot of calcium); 3) Have more eggs as the egg yolks have a good amount of this micronutrient; 4) Spend 15 minutes in the sun each day; 5) Try taking 1000 IU of vitamin D3 chewable on a daily basis, sometimes the prescription dose is 10,000 IU once a week and this can make you feel sick.
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November 2011
Q: I had a total colorectal removal with a j-pouch formation about 10 years ago. I had problems with pouchitis frequently afterward and continue to have chronic abdominal pain, cramping, and diarrhea. Can someone still have UC after having their colon removed?
A: After total proctocolectomy and ileal pouch-anal anastomosis patients no longer have ulcerative colitis. At surgery all of the colon is removed, except for 1-2 cm of the very end of the rectum near the anus. Although patients no longer have ulcerative colitis, they can continue to have a variety of symptoms that can be similar to ulcerative colitis symptoms, including urgency, frequency, diarrhea, cramping, and rectal bleeding. These symptoms may be due to inflammation in the ileo-anal pouch (pouchitis), inflammation of the remaining 1-2 cm of rectum (cuffitis), Crohn’s disease of the pouch, or irritable pouch syndrome. In addition, scar tissue from surgery (adhesions) or a slow leak from the pouch, with subsequent infection and inflammation, can cause symptoms of abdominal pain and loose stool. A combination of lab tests, radiologic imaging (CAT scan or MRI), and an endoscopy of the pouch (pouchocopy) can help distinguish between these different possibilities.
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November 2011
Q: Should I have a colonoscopy immediately after a severe colitis flare-up or should I wait at least a week or more?
A: It is usually best to wait a couple of weeks after a severe flare-up before doing a colonoscopy, since occasionally the preparation and procedure can worsen the IBD. However, in some situations it is important to do the procedure even during a severe flare-up, so the decision regarding timing of a colonoscopy should be discussed with one’s doctor.
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November 2011
Q: I have had Crohn’s for almost 36 years and had ileostomy surgery last January. I have a hernia in my stoma—is that serious?
A: Stomal hernias are common and are not necessarily serious, especially when small. However, larger stomal hernias may be uncomfortable and can interfere with normal daily activities and normal stoma function. These larger stomal hernias often need surgical repair.
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November 2011
Q: I am currently in a mild flare up and I’m having many problems with joints (big toe, 2nd and 3rd toe). Is there something I can do to lessen the inflammation?
A: The best way to manage the joint inflammation associated with disease flares is to treat the flare itself, thereby decreasing the overall inflammation. However, since improvement in a flare is not always instant, some physicians will treat the pain associated with joint inflammation by adding medications specifically for pain and/or joint inflammation, though it is best to avoid the common over-the-counter anti-inflammatory medications like aspirin, ibuprofen, and naproxen. Additionally, pain focused specifically in the toes, feet, or ankles may be due to another joint disorder like gout or pseudogout, so it is always best to discuss new onset joint pain with one’s physician.
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November 2011
Q: Is suddenly developed eczema after starting a new medication a common side effect?
A: The new development of eczema or any new skin rash is not common with most medications and should be discussed with one’s physician.
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November 2011
Q: My 27 yr old son-in-law was just diagnosed with Crohn’s. He has symptoms that indicate Crohn’s however they are going to do radiation on this thyroid. I have not seen any references to the thyroid in my research so this concerns me. He has lost 30lbs in about 2 months, has "the shakes" and they did an MRI and that is when Crohn’s was determined. Should a second opinion be sought?
A: The simultaneous occurrence of two new illnesses, such as Crohn’s disease and thyroid disease, is somewhat unusual, so one would want to be 100% certain of the accuracy of both diagnoses. Furthermore, the diagnosis of IBD is based not just on x-ray findings, but should also include a careful synthesis of clinical symptoms, laboratory results, endoscopic, and pathologic findings. In general, it is often useful to get a second opinion from a physician who focuses on the diagnosis and treatment of patients with IBD.
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November 2011
Q: I was diagnosed with Crohn’s in 2009. I do not have a weight loss problem, but the opposite. I eat when I am nauseous. I have recently put on more weight as my life became more stressful and I am experiencing more flare ups. Are anti-nausea medications okay for long term use in Crohn’s patients?
A: Anti-nausea medications are usually not recommended for long-term use. Chronic or recurrent nausea, with or without vomiting, is often either a sign that something is wrong or a medication side-effect. It is best to try to understand the cause of the nausea and correct the problem, rather than simply cover up the symptom with chronic use of anti-nausea medications.
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November 2011
Q: I have a 30+ year history of Crohn’s Disease currently considered in remission due to surgery and continuing meds. Now I have pulmonary complications (chronic brochiolitis) consistent with Crohn’s patients or patients on immunosuppressive drugs. What are the treatment options for this?
A: Bronchiolitis is a serious lung condition and the treatment for this should be directed by a board-certified pulmonary specialist physician. The treatments for bronchiolitis depend in part on the specific cause and severity of the inflammation, but can include corticosteroids, like prednisone and immunomodulators. If the bronchiolitis is caused by the Crohn’s disease, treatment of the Crohn’s disease may improve the condition.
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November 2011
Q: Is there a method to determine which biologic to use for the first time for a teenager diagnosed with Crohn’s that failed azathioprine therapy?
A: At this point in time there is no way to determine if one biologic medication is better than another for the treatment of IBD or to predict response to biologic therapy ahead of time. However, in the future it may be possible to make more informed choices about drug selection and response through genetic analysis. Ongoing research projects are actively looking for ways to predict response to medications, including biologic therapies.
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November 2011
Q: My daughter, 10, has ulcerative colitis and is taking infliximab. She had an infusion today and her SGOT levels are now 115 (highest they have been was 75 previously) and her SGPT level is now 43 (up from 28 last month.) Should I be concerned or am I just overly worried? Her other labs were within normal limits.
A: Mild elevations in liver function tests (LFTs) are fairly common in patients treated with biologic therapies, like infliximab. LFTs can also rise during treatment with immunomodulators, such as azathioprine, 6-mercaptopurine, and methotrexate. However, LFT elevations may be a sign of concomitant liver problems associated with IBD, like primary sclerosing cholangitis (PSC).These IBD-associated liver conditions can occur in any patient, including children. Although the LFT elevations are not dangerous in and of themselves, they should be monitored closely and if they continue to rise an adjustment in therapy and/or further investigation may be necessary.
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September 2011
Q: Does 6-mp or Azathioprine affect men’s fertility?
A: The effect of these medications on male fertility is not well studied. One study demonstrated that male sperm counts and other measures of fertility are normal in patients receiving azathioprine. Studies in animals have shown some differences in fertility in animals receiving azathioprine compared to those not receiving azathioprine, but it is unclear what this means for men. Currently, there is not enough information to recommend that all men should stop their azathioprine prior to starting a family.
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September 2011
Q: My son was diagnosed with erythema nodosum. He also has ulcerative colitis. How, if at all, is this related?
A: Patients with Crohn’s disease or ulcerative colitis may develop diseases outside the gastrointestinal tract. These diseases—also called extraintestinal manifestations (EIMs) -- are disorders of the immune system. EIMs usually refer to skin disorders (erythema nodosum and pyodermagangrenosum), eye disorders (uveitis and episcleritis), liver disorders (primary sclerosing cholangitis), and joint disorders (ankylosing spondylitis and certain types of arthritis). Sometimes mouth sores and fevers are included as EIMs. EIMs may or may not mirror IBD activity. EIMs occur in 6-40% of patients, and vary in frequency in patients with Crohn’s disease and ulcerative colitis, and men and women.
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September 2011
Q: I had an ileostomy 6 months ago after 1 bout of suspected colitis and a perforated bowel. Now my doctors are unsure if it was ulcerative colitis or Crohn's. Why can they not tell which it was?
A: Usually Crohn’s disease and ulcerative colitis have distinctive features. Crohn’s disease can involve any part of the intestinal tract from the mouth to the anus, can have areas of intestinal inflammation that are next to normal areas (called “skip” lesions), and inflammation can result in perforation of the intestine. Some Crohn’s patients, but not all, have a unique kind of inflammation called granulomas. Granulomas are seen in biopsy specimens when looked at under the microscope. Ulcerative colitis involves only the colon, and only the very superficial layers of the colon are inflamed, making perforation less common. In some cases, patients have features of both, making it difficult to make a firm diagnosis. Uncertainty arises in patients with inflammation only in their colon and without granulomas in their biopsy specimens. Disease behavior can also be similar: while intestinal perforation is more common in Crohn’s disease, it can also be seen in patients with ulcerative colitis, especially those with very severe inflammation. Another difficult situation is a patient who undergoes a colectomy for ulcerative colitis and then develops complications, such as abscess or fistula. The physician then must consider whether the complication was because of the surgery or because of underlying Crohn’s disease. Sometimes patients and their physicians may need to observe disease patterns for months to years to make a firm diagnosis. It can still be difficult to firmly distinguish Crohn’s disease from ulcerative colitis. Indeterminate colitis is the term used to describe patients in this situation.
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September 2011
Q: I have colitis and just found out this year. I also compete in cycling and typically train and race 10-12 hrs a week. Is there any effect of this on the colitis? Could the physical stress cause a flare? Are there any recommendations for athletes with colitis for diet and training?
A: There is no evidence to suggest that exercise worsens inflammatory bowel disease. Exercise is important for bone health and for mental health. There are professional athletes with IBD. Some IBD patients have decreased exercise tolerance, but the available studies suggest this is mainly related to complications of IBD, such as anemia and poor bone health. There are also practical issues to consider. Patients with ostomies should refrain from contact sports, patients with active disease—particularly of the rectum—may need to be close to a bathroom, and some may need to be prepared for the occasional accident. The message, however, is that exercise should be done to the extent it is tolerated, it should be encouraged, and it is more beneficial than harmful in the majority of patients. With respect to diet, a healthy one is the rule. For patients who have trouble keeping weight on, they should understand that physical activity burns calories, and so they will need more calories. The more strenuous the exercise the more (healthy) calories they will need. For most patients, especially those with inactive disease, the dietary recommendations for athletes with IBD are usually the same as athletes who don’t have IBD.
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September 2011
Q: I am about to start training for the CCFA half marathon. I have severe CD with an ileostomy. My ostomy is very active and there is a short duration where there is no output. I already have a problem low sodium and low potassium. I often end up in urgent care needing 3-4 liters lactated ringers. How will I avoid exacerbating these problems while training and during a day of half marathon?
A: Patients with ileostomies can have significant water losses, and importantly, sodium and potassium losses. For an athlete with an ostomy, the water, sodium and potassium losses from perspiration and increase respirations may also be substantial. Ostomy, perspiration (sweat), and respiratory losses must be accounted for when considering fluid and electrolyte replacements. If a patient is having difficulty maintaining hydration at rest, this should be addressed with their physician prior to introducing an intensive training program. It is important to realize that most sports drinks do not meet the fluid and electrolyte needs of an athlete with an ostomy. Sports drinks may have too much sugar and, more importantly, not enough sodium and potassium. A patient with an ostomy may need pediatric hydration solutions (which are much higher in sodium and potassium) to maintain normal hydration.
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September 2011
Q: I had surgery in 2005 and they removed 10 inches where the Crohn’s was due to a blockage. Since then I have been great. Then this year my liver went bad and I am on Imune azathioprine. Now my Crohn’s has flared up again and my doctor suggests surgery or infliximab due to a new blockage. What does infliximab do and what are the side effect? Is surgery or medication a better option?
A: Infliximab is an antibody. Antibodies are proteins that bind very specific molecules. Infliximab is an antibody that binds a chemical called tumor necrosis factor alpha (TNF-a). TNF-a is a chemical that causes inflammation. When infliximab binds TNF-a, it inactivates, decreases or completely eliminates inflammation caused by Crohn’s disease in many patients. Infliximab is given as an intravenous infusion. Side effects include symptoms during or shortly after the infusion, an increased risk of infection, and, though small, increased risk of certain cancers. There are other side effects as well, and patients should have a good understanding of these prior to starting any medicine. As is the case with all treatments for Crohn’s disease, the risks of the medicine should be considered with the medicine’s benefit. Surgery may be necessary in Crohn’s disease because some medicines are not helpful in certain instances. If a bowel obstruction is caused by inflammation, it may improve with medicine. If a bowel obstruction is caused by scar tissue, surgery may be required to relieve the obstruction. Again, the patient should have a complete understanding about what the potential benefit of surgery is, and what the potential risks are. With all that said, some patients benefit significantly from surgery.
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September 2011
Q: My 17 year old son was diagnosed with UC in October 2010 and the diagnosis was changed to Crohn’s disease in April. He’s gone through many different treatments and is now on infliximab. The inflammation and symptoms have reduced, but he’s not in remission. I’m concerned that he’s gone 16 months with continued inflammation. Is it possible to safely replace infliximab with a 6MP or some kind of combination therapy?
A: First of all, there are several reasons for ongoing symptoms in the face ofwhat should be effective Crohn’s disease therapy. The cause of symptoms may be due ongoing inflammation due to Crohn’s disease, which may be suspected based on laboratory tests or endoscopy/colonoscopy. If Crohn’s inflammation is present, then medicines should be optimized. Some patients don’t take their medicines. There are many reasons a patient doesn’t take their medicines: I have found the most common reason is they forget or they have side effects and are afraid to tell their doctor. Whatever the reason, tell your doctor if you aren’t taking them and why. If you are taking your medicines, there are ways your physician can tell if the dose is incorrect or if it’s not effective. There are certain tests that may help a physician decide if infliximab dosing can be increased or why it is not working. While adding mercapturine (6MP) may be considered in some patients, there is a concern that infliximab AND 6MP may increase the risk of certain infections and cancers. If inflammation cannot be found or doesn’t appear to be causing symptoms, other reasons for ongoing IBD symptoms should be considered. One alternative explanation for ongoing symptoms is a stricture or scar in the intestine. If present, strictures may not respond to any therapy and require surgery to repair. Lastly, ongoing Crohn’s disease symptoms while on therapy may be due to non-Crohn’s disorders of the intestine, including infection—particularly Closteridiumdifficile, undiagnosed celiac Sprue, lactose intolerance, or irritable bowel syndrome. Patients, their families, and physicians should explore all potential explanations for ongoing symptoms while receiving what should be effective therapy.
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September 2011
Q: If you have developed antibodies against one biologic drug, does that mean you will develop antibodies against other biologic drugs?
A: Infliximab, adalimumab, and certolizumab pegol are medications used to inactivate a chemical called tumor necrosis factor alpha (TNF-a). These therapies are antibodies—proteins that bind to and inactivate very specific molecules. They are called biologics because they are antibodies. Antibodies to infliximab increase the risk of infusion reactions, and may decrease the effectiveness of infliximab. Sometimes additional medications (such as methotrexate) are given to patients in addition to infliximab to attempt to prevent the formation of antibodies to infliximab. Antibodies to infliximab can be measured in the blood, and if they appear to be clinically important in a given patient, therapy with another biologic (adalimumab or certolizumab pegol) can be used. This is because the antibodies to infliximab don’t react with adalumimab or certolizumab pegol. Antibodies against adalumimab and certolizumab pegol can develop, but currently, there are no blood tests commercially available yet to measure them.
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August 2011
Q: I always seem to flare right before my period, is this common in IBD patients?
A: Research has shown that there is a relationship for some women and their menstrual cycle. Symptoms of IBD can be worse the week before or the week of menstrual bleeding. Recognizing this pattern of disease behavior can help your doctor plan a treatment regimen for you which may include the timing of biologics or the recommendation of oral contraceptives to help minimize menstrual symptoms.
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August 2011
Q: How effective are probiotics in reducing inflammation in Crohn's disease or ulcerative colitis?
A: Many studies have tested the effectiveness of probiotics in reducing inflammation in IBD. Results have been mixed for Crohn’s disease, with some studies showing a benefit, many showing no effect, and some showing that symptoms get worse. On the other hand, several recent studies have shown that probiotics may reduce inflammation in patients with Ulcerative Colitis. The choice of a specific probiotic should be discussed with your doctor, as they vary widely in make-up and stability in the GI tract.
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July 2011
Q: What are the chances of proctitis changing to colitis? I have pain in my upper colon now and believe it is colitis. Is my pain a symptom of proctitis or could it have grown to colitis? Also, I have been bleeding for 6 wks, is that abnormal? I am currently taking mesalamine with a rectal enema and cannot go to the bathroom and do not have diarrhea.
A: Symptoms of colitis include pain, bloody stools, and frequent loose stools (including night time stools). While ulcerative colitis can affect the entire colon (pancolitis), it may also be limited to segments of the colon, including the rectum. When colitis affects the rectum, or the very end of the colon, it is called proctitis. Some people have only proctitis, and other people may have other areas of their colon affected with inflammation. Patients with proctitis (with or without other areas of colon involvement) will often have a sense of stool urgency, frequency, rectal bleeding, and often pain. Rectal bleeding for greater than six weeks is not normal, and may reflect inadequately treated proctitis or colitis. Your gastroenterologist will want to discuss these symptoms with you and potentially change your medication. Additionally, change in your stooling patterns, particularly an inability to stool, should be investigated to exclude the development of colon cancer. Your doctor will help you determine the extent of your colitis and if there are any areas in your colon that are worrisome for cancer.
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July 2011
Q: Is swelling in the throat or difficulty swallowing Crohn’s related? I’ve had trouble taking pills and with getting things stuck in my throat for the past year, but I didn't think it was related so I did not mention it to my GI doctor. It is getting worse though and I wonder how concerned I should be and what could help the situation.
A: Difficulty swallowing (dysphagia) is never normal, and in patients with Crohn’s disease, this symptom should be promptly evaluated by your gastroenterologist. There are many causes of dysphagia, including infection, gastroesophageal reflux disease, inflammation of the mouth or esophagus, or development of an esophageal stricture. You should discuss your symptoms with your doctor and your health care team. They may choose to perform a diagnostic x-ray study or perform esophagogastroduodenoscopy (EGD, upper endoscopy) to look at and biopsy any unusual areas in your esophagus.
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July 2011
Q: What damage is caused from a c diff infection with Crohn's disease?
A: Clostridrium difficle infection (CDI) is one of the major causes of antibiotic-associated diarrhea and may represent one of the most common hospital-acquired infections around the world. Patients with inflammatory bowel diseases (IBD) are particularly prone to developing CDI given the higher rates of clinic visits, hospitalizations, antibiotics, and procedures performed. Additionally, some patients with IBD may be at risk for CDI even without antibiotic exposure. Symptoms may mimic or exacerbate an acute flare of either Crohn’s disease or ulcerative colitis, including fever, abdominal pain, nausea, and diarrhea. Recognition of CDI in patients with Crohn’s disease and ulcerative colitis is important. Diagnosis is made via stool sampling. Once treated, CDI should not be expected to cause permanent damage in patients with Crohn’s disease. Treatment is generally with very specific antibiotics, and most patients have a prompt and complete response. However, progressive CDI can lead to severe colitis and require emergent surgical intervention.
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July 2011
Q: A question about the NOD2 gene and apparent increase in Crohn’s cases. Considering that the incidence is higher in urban areas, is transmissibility possible? If a normally beneficial bacterium’s cell wall receptors have changed and it is transmitted to someone with an abnormal NOD2 gene could it initiate Crohn’s while someone with a normal NOD2 gene would be unaffected?
A: The answer to the transmissibility question remains unknown, but the potential answers are provocative. The precise mechanism that causes Crohn’s disease remains imperfectly understood. However, a common characteristic of IBD is an increased immunological response that perpetuates an inflammatory reaction in the gastrointestinal tract. NOD2 is a gene that regulates gastrointestinal immune and inflammatory response to gut bacteria. Some patients with Crohn’s disease have NOD2 gene mutations; however, not all patients have NOD2 mutations, suggesting that it is a susceptibility factor. Therefore, in susceptible individuals with an abnormal NOD2 gene, it is possible that an otherwise normally beneficial bacterium or its mutation, its cell wall or byproducts could initiate an abnormal immunological cascade triggering the development of Crohn’s disease. This same bacterium may not invoke an abnormal immunological response in a normal individual.
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July 2011
Q: Should you only make dietary changes during a flare—or is it also helpful to watch your diet at all times? For example is it wise to avoid high fiber foods all/most of the time? In other words can watching your diet help to prevent flares and/or the frequency of them?
A: Dietary recommendations must be individualized to reflect disease type, area of intestine involved, and the severity of the disease. While it is important to strive for a well-balanced and healthy diet all the time, sometimes flares of disease will cause more dramatic dietary changes to reduce symptoms. In your example, avoiding high-fiber foods is recommended in patients with IBD that have abdominal pain, cramping, or diarrhea after eating. However, some patients in remission and on maintenance therapy tolerate high-fiber foods without difficulty, and this is largely on a trial-and-error basis. Watching your diet may help you to prevent symptomatic flares if you have Crohn’s disease associated with narrowing of the intestine, as intestinal cramps or pain in this setting may be more reflective of the intestinal narrowing more than the disease itself. Keeping a food diary is extremely helpful to assist identifying what foods and beverages you tolerate well, and what foods you should avoid based upon your symptoms. The CCFA has a food diary template available for download at: http://www.ccfacommunity.org/ResourceCenter.aspx
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July 2011
Q: What is the best diet plan post a proctocolectomy or resection surgery?
A: There is no perfect diet plan for all individuals that have had an operation, but common recommendations for eating following proctocolectomy with reconstructive ileoanal pouch reconstruction include: 1) efforts to eat smaller, more frequent meals; 2) avoiding concentrated, sugar-dense liquids like soda, or greasy foods that can increase loose stools; 3) start slowly and increase intake gradually; 4) avoiding late-night meals – this helps to cut down on having to get up in the middle of the night to have a bowel movement; and 5) stay well-hydrated and drink plenty of fluids. Your surgeon and gastroenterologist will work with you to define goals for the consistency and frequency of your bowel movements. The consistency of your bowel movements can be modulated by the use of supplemental fiber, and the frequency can be influenced by anti-diarrheal medicines that slow the intestinal transit time. You will want to discuss with your doctors specific foods such as nuts, seeds, corn, and popcorn if they have given you problems or caused cramps in the past. There is high value in maintaining a food and beverage diary in the first few months following surgery, as it will help you to identify foods that may give you more problems with bowel movements and foods that you can consume without difficulty. The CCFA has a food diary template available for download at: http://www.ccfacommunity.org/ResourceCenter.aspx
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July 2011
Q: I frequently have urgent needs to have a bowel movement. It can be solid or diarrhea in form but it requires immediate access to toilets. It has caused "accidents" to happen. What help can I get?
A: Urgency, or the feeling of having to have an immediate bowel movement, is common when there is proctitis, or inflammation in the rectum. Sometimes, the sense of urgency is so great that despite every effort, accidents will happen. This is not a lack of sphincter control (the muscles that control this area); this sensation reflects stool in the rectum and the response of an inflamed rectum trying to expel its contents. The most important element in your situation is to seek medical help, as the diagnosis of proctitis can be made generally with clinical examination and sigmoidoscopy. There are a number of treatments for proctitis that can help alleviate the symptoms of urgency.
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July 2011
Q: My son has Crohn's disease and also has cerebral palsy with epilepsy. He is taking infliximab and had side effects of increased seizures and mood and behavioral changes. What is going on?
A: Infliximab is a monoclonal antibody directed against tumor necrosis factor-alpha (TNF-alpha) that has received FDA approval for use in moderate to severe or fistulizing Crohn’s disease refractory to other conventional therapies. Infliximab and other medicines that inhibit TNF have been rarely associated with the onset or exacerbation of central nervous system disorders including mental status changes or permanent disability, particularly in people with multiple sclerosis or other demyelinating disorders. Seizures following infliximab treatment are very rare and there have been a few reports of infliximab-related seizures that resolved with discontinuation of infliximab treatment. Sometimes the findings are subtle and require MRI of the brain and/or electroencephalograph (EEG) monitoring to detect changes. You should discuss your son’s neurological and behavioral changes with your physician.
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July 2011
Q: My partner has ulcerative colitis – is it safe to have anal intercourse when there are no active disease symptoms?
A: Sexual activity is a normal and healthy component of a mature relationship. In the absence of active symptoms of ulcerative colitis, anal intercourse alone should not be expected to increase symptoms. Anal intercourse should be avoided if your partner has active proctitis or anal fissure, as the friction that may occur can aggravate these conditions. Importantly, if your partner develops any symptoms following anal intercourse, this should be discussed promptly with your physician.
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Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2011
Q: My teenage son has Crohn’s and has been on infliximab for 4 years without active flare ups. When or how will we know when it is safe to stop the infliximab or to space out the doses? If we stop the treatments and if he flares up, will he be able to go back on the infliximab?
A: It is difficult to define an “exit strategy” for Crohn’s disease that is well-controlled on biological maintenance therapy. Increasing experience in children and adolescents using infliximab for maintenance therapy has demonstrated an improved quality of life, reduction in the need for corticosteroid therapy, fewer hospitalizations, and reduced likelihood of developing antibodies to infliximab. In studies observing outcome following discontinuation of infliximab in Crohn’s disease, approximately half of the patients will experience recurrent symptoms around one year, and about 35% of patients will remain in clinical remission. Some of the major issues with long-term use of infliximab include the risk of infection and rare cases of lymphoma. A major concern with discontinuation of infliximab is the development of antibodies that prevent its future use. Whether or not your son would be able to go back on infliximab is largely dependent upon whether his body develops antibodies to infliximab.
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June 2011
Q: I am considering moving back to the northern US from the southwest, which is where I was diagnosed (indeterminate colitis). It's common to hear that IBD is more prevalent in northern climates, but that's as much as any source ever says about it. Where does this statement come from and how should I interpret it? Are more people diagnosed there? Do people there flare more often? I am looking for insight to help me decide if moving north is a health risk. I lived there before I was diagnosed.
A: Studies looking at large groups of people have found that diagnosing people with inflammatory bowel disease is more common in northern parts of the world (North America, England, Northern Europe) and less common in other areas of the world like Asia, Africa, and Latin America. Some of this may be complicated by the fact that infectious causes for colitis may mask the diagnoses of IBD in the latter areas. Other studies have found this similar “gradient” of diagnosis within northern countries including the USA and France. However, with the more we know about IBD and with more awareness, these “less common” areas are increasingly diagnosing IBD as well. Of note, these studies are all looking at “prevalence” (how common) and “incidence” (new diagnoses) of IBD and not at how the disease is affected by moving from one climate to another. This latter study is much more difficult to do and less is known. In regards to how your colitis will do depending on where you live (which is really what you want to know), there is no clear data that moving to the north will lead to more flares than living in the south. While we know there are potential triggers for flare-ups (for example, infections, smoking, non-steroidal anti-inflammatory use), no study has clearly found that moving from one climate to another makes an impact on the course of your colitis.
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June 2011
Q: I have had Crohn's since 1987 and am in my mid-40s. I currently take adalimumab twice a month and am doing very well on it. I had surgery in 2003 and they removed 65% of my large intestine and 35% of my small. My problem is that about 90% of the time I have a bowel movement (BM) after I eat. It can be embarrassing at times especially if my wife and I are out to eat with friends. Any suggestions on how to reduce this?
A: It is a natural reflex for the bowels to evacuate after eating a meal, to make room for the newly eaten food. However, when you have had surgery, such as you describe, that reflex may be exaggerated. One possibility that may help reduce the need to have a BM after meals, especially if you are planning to go out, would be to take an anti-diarrheal medicine, like Imodium, prior to the meal (be pre-emptive about it, don’t wait until it happens!)
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June 2011
Q: What type of dietary modifications can help in the symptoms of nausea and vomiting?
A: The first question to ask is why you are having nausea and vomiting. It is important to address the cause for these symptoms with your doctor so that, if possible, specific management can be aimed at alleviating the underlying reason for these symptoms (i.e. treating active disease or removing a blockage if it is present). If these symptoms are related to an active flare, eating smaller more frequent meals will often help. Also, avoiding fiber, dairy, spicy foods, and high fat meals during flares can also help. If the symptoms are related more so to a chronic blockage (scar tissue) in the bowels, then eating a low residue diet (especially avoiding diets high in insoluble fiber) and again, eating small frequent meals, may help. Nausea and vomiting could also be related to medications used to treat IBD, so discuss this possibility with your doctor as well.
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June 2011
Q: Is exercising recommended in helping to manage the symptoms of IBD and do I have to take any precautions if I want to exercise?
A: Exercise is an important part of any healthy lifestyle and having IBD doesn’t change that. However, when you have active symptoms, you may not feel up to exercising. On the other hand, when you do feel well, regular exercise is encouraged. In general, the only limitations on exercise are what you impose on yourself. However, be sure to discuss your specific exercise plans with your doctor.
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June 2011
Q: I have been taking sulfasalzine, azathioprine, and folic acid without any problems since ‘02. A month ago symptoms returned including diarrhea and bleeding-I've had small recurrences in the past which went away quickly but am worried as it been over a month. I've tried changes in diet including eating smaller meals, but haven't had any success. I read that Psyllium fiber in a glass of liquid every night before bed could be an option? Anything else I can try besides trying different meds?
A: Talk to your doctor about your specific case, as you may be able to do short term treatments, like enemas or increasing the dose of your sulfasalazine (depending on your current dose), to get back into remission and then may be able to continue on your previous medical regimen. If you have already been adjusting your diet and have continued to have symptoms for the last month, it is time to get help from your doctor. Psyllium may help to bulk to stools somewhat, but wont treat the underlying inflammation in your colon.
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June 2011
Q: I have had Crohn's Disease for three years. I have been well controlled until my pregnancy and choice to breast-feed resulted in a flare and I developed a very superficial perianal abscess at the anal verge. I and D performed by colorectal surgeon, but it refilled and I was able to drain myself. Now my surgeon wants to do a fistulotomy for the fistula: suspect a low, simple fistula. My meds are flagyl, 6-mp and entocort. Should I wait to see if meds help or go ahead with surgery?
A: An important aspect of your situation is to know whether you have inflammation in your rectum along with the fistula. If there is no rectal inflammation, a fistulotomy is not unreasonable given that you have had recurrent problems with abscess. On the other hand, if you do have active inflammation in the rectum along with the fistula, a fistulotomy is an option, but your surgeon may also want to consider placing a seton (small rubber band placed through the fistula to keep it open and prevent abscess while it heals up) instead of a fistulotomy, while giving your medicines time to help heal the fistula as well. Discuss these options further with your doctor to decide which is the best option for you.
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June 2011
Q: What are the realities of life with a permanent ostomy? How do people experience and deal with physical, emotional changes? I have not been able to find much info, and only people that have had temporary, reversed or Jpouched.
A: The best thing to do is talk to someone who has had a permanent ostomy. Some local CCFA chapters offer “Power of two” programs to allow you to be paired up with other volunteer patients with inflammatory bowel disease who have gone similar experiences as you. If this is not an option at your local CCFA chapter, other options are the CCFA Community website (www.ccfacommunity.org) and the United Ostomy Foundation (http://www.ostomy.org) where you can find support groups and other resources.
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June 2011
Q: Is it possible to consider getting pregnant if you have a permanent ostomy?
A: Yes, it is. There is some potential for reduced ability to conceive after having had surgery, however, it definitely an option. Be sure to discuss the possibility with your OB/GYN and gastroenterologist prior to getting pregnant.
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Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2011
Q: Will Crohn’s disease or ulcerative colitis ever go away or heal itself?
A: Both Crohn’s disease and ulcerative colitis are chronic inflammatory illnesses that we consider lifelong illnesses. In some cases, however, there is medication-induced healing that is quite durable and spontaneous remission that can be quite durable. Nevertheless, patients are considered to have a lifelong possibility of relapse. This is particularly true in Crohn’s disease when there is quite a high rate of microscopic recurrence after surgery, although much research is being invested into designing ways to avoid such a post-operative recurrence. Surgical treatment of ulcerative colitis results in “loss” of the disease with either the formation of a J-pouch, where a segment of small intestine is attached to the anal sphincters so that patients can still defecate in the usual fashion, or the creation of a permanent ileostomy, in which the small intestine is brought out the abdominal wall and waste is captured by an appliance worn on the abdominal wall.
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May 2011
Q: I was diagnosed in 09 with UC and have not been able to get into remission. Recently I've had severe rectal pain--difficult to change positions, move, and my bowel movements are more painful than ever. It's been 2 weeks. Curiously, my bowel movement frequency had decreased before onset of this pain. A pelvic CT scan was done in ER and visual inspection, nothing found. What could be causing this extreme rectal pain?
A: Rectal pain associated with relative constipation is usually a sign of an anal fissure or small fistula. Visual inspection is usually not sufficient, and they are quite small so will not be seen on CT. An exam by a colorectal surgeon is needed, they can use a special short scope to assess the area.
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May 2011
Q: What happens when a flare up occurs? What should I look out for? My understanding is abdominal pain, diarrhea, and bloody stools. How long do flare ups last?
A: A “flare up” refers to the occurrence of symptoms after a period of no symptoms (remission). Symptoms of a flare up are dependent on which disease you have (UC or Crohn’s disease) and those symptoms you experienced when you got diagnosed. Any persistent change in your bowel habits, blood or pain should trigger a discussion with your doctor as to whether your symptoms are indicative of disease recurrence. The length of a flare up will depend on how long you have symptoms before treatment, the possible reason for the flare, and how bad the disease gets before treatment.
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May 2011
Q: Will maintaining a gluten-free diet help with the symptoms of IBD?
A: A lot of people claim that a gluten-free diet will help with symptoms of IBD. However, most people are not really intolerant of gluten, an entity that is found almost everywhere. In ulcerative colitis, the inflammation is in the colon not the small intestine so the effect of gluten has no direct effect. In Crohn’s disease, some feel that a gluten free diet helps them feel better. Most of this effect is from a healthier diet in general, since gluten free essentially means taking all the “crap” out of your diet and that you are eating healthier, eating foods made at home and not purchased pre-made or in restaurants.
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May 2011
Q: What type of diet or lifestyle modifications will help with increasing energy and dealing with the symptom of fatigue?
A: There are no diets that have been shown to definitively and consistently helped patients with energy. Carbohydrates give your body instant energy, but protein is important for longer term energy requirements. Making sure that a well balanced diet in terms of nutrients is important—if you are on a very limited diet then supplementation with vitamins like vitamin B12 and iron is necessary.
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May 2011
Q: My daughter is away at college and is sexually active – she is on a biologic therapy for CD. Would going on birth control pills affect her medication or vice versa?
A: There is no evidence that oral contraceptives have any effect on biologics. It is important that young women on oral contraceptives not smoke, and certainly with Crohn’s disease these patients should not smoke.
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May 2011
Q: I usually go to follow-up appointments with one of my parents. However, this time, my parents can't get off of work.I am nervous because it's my first follow-up appointment without a parent to help me understand what the doctor is discussing. What kind of questions should I ask at this follow-up appointment?
A: I think it’s great you get a chance to go to an appointment by yourself – it’s good practice. First, think about any questions you might have for your doctor before you even go to the clinic. Do you have any questions about any symptoms, medications you’re taking (including over-the-counter medications), diet, or life with IBD in general? Or is there something you heard or read about IBD and you want to know if it’s true? Write them down and take them with you to the appointment. It’s so easy to forget your questions when you’re actually in the clinic. Next, consider taking a friend with you. It can get overwhelming when you’re getting a lot of information from the doctor, and sometimes you’re thinking about it all and how it’s going to affect your life, and you’re not really hearing everything your doctor is saying. Your friend can help make sure you hear and understand everything. You or your friend can take notes during the appointment, too. You know your parents are going to want to know everything the doctor said, so taking notes is a good idea! If you don’t understand something your doctor is saying, it’s okay to ask him or her to explain. It’s your doctor’s job to help you understand. You can say, “I’m not sure what you mean when you say…” or “Can you explain that a little more? I’m not sure if I totally get it.” Check out CCFA’s brochures to get additional questions that you may want to ask your doctor (www.ccfa.org/info/brochures). At the end of the appointment, it’s really helpful to sum up what you and the doctor talked about. That way you can make sure you know what’s going on.
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May 2011
Q: I have a very active 14 month old girl. When I am in a flare and feel drained, sick, and tired, my daughter and I both seem to have a hard time coping with the lifestyle changes. We are very active, so when I get sick, she has a very hard time adjusting to the "new" mommy that just bounces between the couch and the bathroom all day and I have a hard time adjusting to the "new" relationship that I have to have with her. What coping tactics do you recommend for raising children and having IBD?
A: It certainly is difficult to be the mom you want to be when you aren’t feeling well. Your daughter might initially be confused about why her “new” mommy is spending so much time on the couch and in the bathroom, but developing special routines for couch times will help her differentiate the active times from the less active ones. She’ll learn to adjust to both situations, both of which she’s going to encounter in other areas of her life too. You can have special toys, books, coloring books, videos etc. that only come out when you’re not feeling well. The key here is to bring these special things out ONLY during these times, to keep them special and engaging. You can occasionally add to this collection to keep it fresh too, but there’s no need to buy an entire new set of toys. You can also designate certain times during the day as “play alone times” in which she plays by herself. Given her age and usual activity level, these play times might need to be short initially, but they can be gradually lengthened. It’s very helpful to use a large, dial-type kitchen timer to set the amount of play time so your daughter can have a sense of how much time she has for “play alone time.” Give yourself a break, too. Everyone has less patience when they aren’t feeling well. This is definitely a time to ask friends and relatives to help out by taking your daughter for a couple of hours.
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April 2011
Q: My daughter had a complete colectomy after being diagnosed for UC in 2008. She is doing well, but seems to be prone to colds and flu. She received a flu shot this year. She takes no medication. Are UC patients more prone to colds and flu?
A: Ulcerative colitis patients are not more prone to infections such as Influenza or other upper respiratory illnesses. The flu shot is always a good idea. While not relevant to your daughter’s care, some of the medications that we use often in the treatment of ulcerative colitis can result in an increased risk of infections, however, particularly corticosteroids like prednisone, immunomodulators like 6-merpcaptopurine and azathioprine, and anti-TNF’s like infliximab.
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April 2011
Q: I've recently introduced coffee back into my diet for about a week after being diagnosed with Crohn's. I have steadily been having more and more pain. Is coffee a known irritant?
A: There’s so much that’s not known about the influence of diet on Crohn’s disease activity and symptoms. Coffee is NOT known as an irritant, but if it makes symptoms worse, then you should consider stopping it. If, however, you would prefer not to abandon coffee, you can try re-starting it after stopping for a couple of weeks. This kind of re-challenge can be useful in distinguishing something that’s harmful to you from something that seemed to cause symptoms by coincidence.
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April 2011
Q: My 13yr old was diagnosed with CD 2.5 years ago, she is presently taking mesalamine. Much of her inflammation is located in the rectum, but every time she tries a rectal med (mesalamine enemas, suppositories, or corticosteroid foam) it just seems to aggravate her symptoms (painful cramping and more frequent bowel movements). Do you have any advice? She has trouble having a bm and yet it isn't constipation as the stool is soft. Her doc still tried stool softeners but it just caused frequent bms.
A: A number of conditions can co-exist with Crohn’s disease, including anal fissures and altered regulation of the nerve and muscle function of the rectum involved in evacuation of stool. A good anal examination and possibly anorectal manometry testing in which the nerve and muscle function can be formally evaluated can be a good supplement to a sigmoidoscopy or colonoscopy to help determine the nature of the problem.
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April 2011
Q: In 2001 I had 22" of small bowel removed and resected where the small gut meets large. Now I have a stricture at the site in the small intestine. Would strictureplasty be a viable solution or another resection?
A: A number of different options can be utilized to relieve the symptoms of a stricture of the small intestine in a patient with previous small intestinal surgery. These are a second resection, a strictureplasty, and, in the hands of a capable endoscopist, a through-the-scope balloon dilation of a stricture. The precise location and anatomy of the stricture (where relative to the surgical connection, how long the structure segment is, and whether there is an increase in the diameter of the intestine above the area of the stricture, can help you and your doctors determine the best approach.
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April 2011
Q: How successful is the long-term use of 10% hydrocortisone rectal spray foam in the treatment of rectal tenesmus for a Crohn’s or ulcerative colitis patient?
A: There are few long-term studies looking at this problem, but 10% hydrocortisone rectal spray foam is very effective in the short term treatment. Selecting a medicine or combination of medicines that keeps the inflammation of the rectum under control will likely keep the rectal symptom of tenesmus under control; usually, I tend to think of 10% hydrocortisone rectal spray foam as an adjunct to other medicines used to maintain remission, but I do have some patients who have been on it for a while.
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April 2011
Q: My 15 year old son was diagnosed in Oct 2010 with Crohn’s. He has become very angry and withdrawn. Is this normal behavior when someone is diagnosed with a major disease? How can I help him get over the being angry and help him start to socialize with his friends again?
A: Mental health issues, for lack of a better name to describe them, are common in adolescents diagnosed with Crohn’s disease. Talking to your son’s doctor about avenues of help from psychologists, to social workers, to support groups and others can prove to be very helpful to your son. CCFA’s Camp Oasis is another good example. You, too, should seek out a parent support group for assistance in coping with this. Thankfully, and much of this thanks in part goes to the CCFA, there are more opportunities for help than ever before, including information on the www.ccfa.org website, www.ibdetermined.org website, and others. I wish you luck in this endeavor.
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March 2011
Q: How can Crohn's disease in the stomach be conclusively diagnosed? Could inflammation in the stomach diagnosed as Crohn’s cause severe pain? What is an effective treatment for Crohn’s found in the stomach?
A: Studies have shown that approximately 0.5% to 4% of all patients with Crohn's disease will have involvement of their stomach and/or the duodenum (the first part of the small intestine that comes right after the stomach). Inflammation related to Crohn’s disease can be seen on x-ray studies, such as an upper GI series or through an upper endoscopy with biopsies. But, remember that inflammation can be from other causes, including ulcer disease and/or H. Pylori infection. Most patients with gastroduodenal Crohn's disease are asymptomatic, but some people will experience epigastric pain, as well as nausea, vomiting, and weight loss. Treatment for gastroduodenal Crohn’s disease generally includes acid suppression with a proton pump inhibitor. Other medicines can also help, including steroids, 6-MP, and azathioprine. 5-ASA medications are generally not helpful for gastroduodenal Crohn’s disease and the role of biologic therapy remains unclear. In severe cases where a stricture develops and is causing obstruction, this is treated with either endoscopic dilatation or surgery.
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March 2011
Q: I am experiencing lower back pain that stretches across my buttocks and up to waist. Is this part of Crohn's?
A: This kind of low back pain can occur in some patients with Crohn’s disease and will be found to be related to a form of arthritis called sacroiliitis. This condition may be able to be diagnosed by imaging studies, such as a CT scan or MRI. Of course, remember that low back pain is also very common in many people without Crohn’s.
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March 2011
Q: I was diagnosed 14 years ago (at age 22) with Crohn’s disease after a serious case of food poisoning. I have not taken medication for CD in 14 years and have had no disease symptoms since. My colonoscopy over the years show no inflammation. Is it possible that I had a misdiagnosis? Are there new test that should be performed to rule out a misdiagnosis?
A: If you have no symptoms and no other signs of inflammation in the intestine, then it is very likely that you do not have Crohn’s disease. Perhaps there was some transient inflammation due to the food poisoning. There is no need to do any additional tests if you have no symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2011
Q: I have a college age daughter w/Crohn’s disease who has been in remission for about a year. She recently started taking birth control pills. Could the birth control pills contribute to flare ups. Is there a particular pill she should be taking or should she avoid the pill completely?
A: There is some evidence of a relationship between birth control pills and Crohn’s disease, but studies have shown mixed results so the effects are probably minimal. In other words, the risk of a flare-up from the pill is very small. Most women with Crohn’s disease are advised to use a low estrogen formulation of the pill.
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March 2011
Q: I was diagnosed at 76 with UC. I have tried every medication that has not worked. I’m 79 now and my doctor wants to try a biologic. Are biologic therapies riskier for older patients than for younger patients?
A: The biologic therapies all result in a weakened immune system and therefore an increased risk of infections. These drugs can be used safely in some elderly patients, but we generally use them more cautiously because of increased concern for the development of a serious infection.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2011
Q: I believe the trigger for the onset of my 15 year old son's Crohn's Disease was topical acne medication such as adapalene or clindamycin. Drug warnings indicate that this is a possible cause of Crohn's, but his doctor doesn’t seem to agree. Are doctors tracking the use of acne meds with young Crohn's patients to see if there is a trend?
A: Some recent studies have suggested that an acne medicine taken by mouth was associated with development of Crohn’s Disease. However, other large studies have not shown this. Doctors are tracking the use of acne medications to see if there is a trend.
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February 2011
Q: What is it called if UC is in the cecum?
A: It is still called ulcerative colitis – the cecum is the first part of the colon, where the small intestine, the ileum, empties into the colon.
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February 2011
Q: My daughter just had a terminated colonoscopy due to having friable mucosa throughout her procedure. Is this related to colitis?
A: Yes – friable mucosa means the lining of the colon bleeds easily with contact from the colonoscope. This is because of the colitis.
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February 2011
Q: I am on immunosuppresents, so I am not looking for immune system boosters. However, are there any anti-inflammatory supplements which could help with UC? Fish oil, turmeric, etc?
A: Probiotics may help some patients with ulcerative colitis stay in remission. While fish oil and turmeric have also been studied, it is not clear that these will help most people. The best plan is to speak with your doctor about the supplement you would like to try, in the context of the medications you are already taking.
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February 2011
Q: I have experienced severe weight loss recently. My appetite is very low and I find it difficult to eat anything. What can I do to increase my appetite and start gaining weight or combat the effects it's starting to have on my body?
A: Your low appetite may be from the inflammation in your body from IBD, or may be due to a complication of the IBD. You should speak with your doctor about whether adjusting your IBD treatment might help your appetite, and whether nutritional supplements would also help.
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February 2011
Q: Can I drink wheat grass juice? I have Crohn's disease and I am thinking about going to a juicing program to get more vitamins.
A: That should be fine. This has been studied in one small study in patients with ulcerative colitis. Just let your doctor know about any supplements to make sure there are not interactions with medications you are taking.
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February 2011
Q: I am scheduled for a colectomy/ileostomy. One of the medications I am taking (for a non-Crohn’s related disease) has withdrawal effects, including vomiting. My concern is that, post-surgery, the GI transit time will be too fast for enough of the medication to be absorbed into the blood system, resulting in the aforementioned withdrawal effects. Has anyone worked with venlafaxine just after ileostomy surgery or a similar situation?
A: Not that I know of. This is a good question, and you should review with your GI doctor and the doctor prescribing your other medication the plan for the period after your surgery.
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February 2011
Q: Is it possible to have a bowel resection done where the entire transverse colon is removed and the ascending and descending colon are reattached together? I have stricturing of the transverse colon and was given the impression by a surgeon that most of the colon would have to be removed because of it.
A: Yes, if the ascending and descending colon are healthy, than these can be re-attached together.
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February 2011
Q: I have tried all of the traditional treatment programs for Crohn's up to and including infliximab. I don't have profound symptoms - just some minor bleeding, loose stool, and mucus discharge. I stopped all treatment about two years ago, since it wasn't helping with my primary symptoms, which are a constant stomach cramp and severe bloating. Do you have any advice on how to deal with those two chronic and uncomfortable symptoms? I am 65 years old. I look like I am 6 months pregnant.
A: You may want to speak with your GI doctor to make sure that your stomach or small intestine are not affected by Crohns, which could cause these symptoms. If you find that Crohns does not seem to be the cause of your symptoms, than you and your doctor may want to look at other conditions which could be causing inflammation in your stomach and small intestine, dietary factors, such as lactose, or overgrowth of bacteria in the small intestine.
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February 2011
Q: I started the testing process that resulted in my Crohn's diagnosis in November. I went to my GYN in late Oct. with some complaints (discharge - not yeast, pain with intercourse) and am wondering how to tell if it is related to Crohn's or just coincidence?
A: Pain with intercourse could be due to Crohn’s disease. You will want to work with your GI doctor and gyn to determine whether inflammation or a complication of Crohn’s is causing this, and treatments to help.
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Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2011
Q: My husband was diagnosed 29 years ago with Crohn's and he has a very strong family history. The doctors are saying that he has a very aggressive type of Crohn's and I am wondering if there was anything that our children should be doing. I know that there has been some genetic work done, but as far as I know there is not any treatment to help prevent them from getting Crohn's.
A: You are right. With a family history, there is a chance that one of your children may develop Crohns. However, the chance is higher that they won’t. At this point, we don’t have any changes in diet or other factors which you could use to try to reduce this risk.
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January 2011
Q: Can IBD cause bloating in the stomach?
A: Bloating is a very common symptom for patients with IBD. Bloating might be related to the disease, especially if the disease involves the stomach or small intestine. However, bloating might also be related to IBD medications and/or diet. Some foods are very common causes of bloating (and gas), including soda pop, onions and garlic, beans, cabbage, broccoli, cauliflower, and milk products (including ice cream). If the bloating only occurs after eating, and if it is associated with severe abdominal cramps and/or severe nausea and vomiting, it could be a sign of a possible small bowel narrowing in patients with Crohn’s disease.
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January 2011
Q: Before I was diagnosed with Crohn's I had some swelling in my right wrist. I have been on a biologic now for 4 months or so and the doctor told me my Crohn's is in remission. I still have the swelling in my wrist though. I've tried anti-inflammatories and tylenol, but no luck. Is this something that may never go away? My wrist has been swollen for almost 8 months now.
A: IBD can cause a variety of so-called extraintestinal symptoms, including joint swelling and pain. In general, swelling, and often pain and stiffness, of the joints in the arms and legs parallels the activity of the bowel disease. So usually, if the bowel disease gets better with medical treatment the joint disease improves as well. If your joint is still swollen, you should be evaluated by a joint specialist, rheumatologist or orthopedic surgeon, to be certain there is no other problem with the joint.
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January 2011
Q: Over the past year I have noticed a nickel to quarter size sore red lump located very close to my bikini area (started as one but have had two at once). It lasts quite a few weeks, is filled with some pus and mostly blood, and leaves a bruise and scar. It is not an STD. I have had Crohn’s for about 20 years and have had a rather large abscess before at the base of my butt cheek. Could this current problem also be related to my illness?
A: Crohn’s disease and ulcerative colitis can be associated with a variety of skin problems that cause inflammation. Sometimes, but not always, these skin problems will be a sign of progressive disease even if there are no or minimal gastrointestinal symptoms. Skin problems that produce swelling, soreness, and pus in and around the groin, under the breast, or under the arms may be due to something called hydradenitis suppurativa. Shaving these areas can worsen these problems. However, given the location of your lump, this may be a sign of a developing fistula. Since the skin lesions are recurring, this should be discussed with your gastroenterologist or treating physician; you might be recommended to see a skin specialist (dermatologist).
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Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2011
Q: A recent CT scan showed thickening, inflammation and narrowing of small bowel at the site of connection of the Jpouch to small bowel as well as the site of ileostomy. I had an ileoanal colectomy in 2002, reconnected in 2003 and have experienced pouchitis and pain on right side (where ileostomy was) on and off. Medication to control inflammation and removal of JPouch if this treatment fails is currently being considered. Are there other options or suggestions?
A: The description of the X-ray results suggests that you may have Crohn’s disease of the ileoanal J-pouch. If this is the case, then aggressive treatment, including biologic therapy (e.g. infliximab, adalimumab, or certolizumab) would be appropriate. Another, though less likely diagnosis would be pouch ischemia. A pouchoscopy and biopsy should be able to distinguish between these two possibilities. Most patients with Crohn’s disease of the ileoanal pouch can be controlled and improved with medical therapy. However, about 20% of patients with Crohn’s disease of the ileoanal J-pouch will need to have surgical removal of the pouch and an ileostomy.
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January 2011
Q: I want to learn more about methotrexate: side effects, benefits to taking it, how often it is taken and in what manner. My doctor wants to add it to my adalimumab usage.
A: Methotrexate works by interfering with the normal body metabolism of the vitamin folic acid. For treatment of active Crohn’s disease, it is usually given subcutaneously (injection) at a dose of 25 mg once weekly. Sometimes, if the drug is working to control the disease, after twelve weeks the dose is reduced to 15 mg subcutaneously once weekly. Methotrexate is not effective for the treatment of IBD when given orally as pills since it is poorly and inconsistently absorbed by the gastrointestinal tract. However, some physicians will give low doses (around 10 mg once weekly or 2.5mg three times weekly) of oral methotrexate to patients on biologic therapy (like inflximab or adalimumab) to try to prevent allergic reactions and the formation of antibodies against the biologic drugs. Methotrexate is usually well tolerated at low doses (7.5 mg to 25mg total weekly dose). Common potential side effects include but are not limited to fatigue, nausea, abdominal pain, oral sores, headache, abnormal liver blood tests, and low blood counts. Rare but clinically significant side effects include cough or scarring of the lungs or liver.
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January 2011
Q: I am a vegetarian. What sorts of foods can I eat during a flare that will provide me with protein and nutrients, but still be soothing and allow for healing?
A: If you eat eggs, this would be a well tolerated protein source during a flare. If you are able to tolerate milk products, then milk, low-fat and/or hard cheeses, and yogurt are all good sources of protein and other nutrients. Additionally, peanut butter (or other nut butters) and tofu should be well tolerated protein sources.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2011
Q: What is the effectiveness and safety rates of immunomodulators and biologic drugs prescribed for infants and toddlers?
A: The effectiveness and safety rates for immunomodulators and biologic drugs prescribed for infants and toddlers with IBD has not been tested in formal clinical trials. However, in practice both the effectiveness and safety of these medications appears to be similar to that experienced by older children and teenagers. It is important to judge the risks and benefits of these medications for your child together with your child’s doctor.
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December 2010
Q: How does a doctor determine whether a patient has Crohn’s or UC if the disease is located only in the large intestine?
A: This can be difficult. Ten percent of the time we cannot tell the difference and thus diagnose the patient with “indeterminant colitis”. Sometimes there are clues that can go unnoticed, like what appears to be “hemorrhoids” but are really skin tags and signal Crohn’s disease. There are blood tests that can help but these again can be confusing and do not “clinch” the diagnosis.
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December 2010
Q: Is it possible for Crohn's to only manifest in areas of the small intestine that can't be seen by a scope? If so, what is the most effective way to diagnose this and do these alternate methods adequately identify the Crohn's when the symptoms are only mild to moderate in severity?
A: Most patients with Crohn’s disease of the small intestine have signs of the disease in the very last portion of the organ, which can be seen with a scope. CT scans and MRIs are now very sensitive and can pick up abnormalities that previously were missed. As well, video capsule studies (swallowing the pill camera) shows us the entire small intestine. If Crohn’s is present in the middle of the small intestine, there are ways to find it.
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December 2010
Q: How often is ulcerative colitis misdiagnosed?
A: This is a very difficult question to answer as we do not know how many patients fit this category. Ulcerative colitis can be mimicked by many other conditions, and thus it is a combination of tests that lead to the correct diagnosis. An important person in this diagnosis process is the pathologist who is reading the tissue biopsies to see the changes necessary to make the diagnosis of ulcerative colitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2010
Q: Two decades now living with Crohn's and being treated with Remicade for years now as no other meds worked in the past. Currently manageable. How often are colonoscopies recommended in my situation? My MD suggests every two years is standard practice, and I would like another opinion on this as I don't want them this often.
A: After having disease for 10 years we recommend surveillance colonoscopies to look for pre-cancerous changes every 1-2 years depending on your other risk factors for cancer. At this time there is no other suitable way to detect these precancerous changes without doing a colonoscopy. Colonoscopies are never fun, but discussing your reluctance to having them can sometimes lead to manageable solutions for your concerns and make the experience less unpleasant.
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December 2010
Q: Our 2 yr old daughter was diagnosed with Crohn's disease at the beginning of this year. She struggles with constant constipation and has had 2 fecal impactions. Doctors have said there is no particular diet for her to follow... What can help with this constipation? She is a picky eater and sometimes only eats one meal daily. Should she be drinking supplements like Pedisure?
A: In regards to your 2 year old daughter and your concerns about constipation and bowel obstruction there are some helpful dietary modifications I would recommend. First of all, it is very important that she is getting enough calories, protein, fat and micronutrinents, especially calcium, in the diet to promote growth and development. Secondly we would want to make sure she is not consuming foods that would lead to more constipation and risk obstruction. Here are some tips to follow in terms of planning her diet: 1. Homemade shakes made with fortified soy milk, protein powder (like Spiru-tein, found in health food stores)and fresh fruit that is pureed in a blender are great sources of calories, protein, calcium and fat (if you add a tablespoon of peanut butter). I prefer homemade over Pediasure because you can add fresh fruit, like frozen mango, and it is lower in sugar. 2. High antioxidant juices like pomegranate, acai and mangosteen are fabulous sources of nutrition and help to prevent constipation. Try these juices in between meals instead of the typical apple and orange juice. 3. Try to avoid highly irritating fibrous foods like skins, seeds, nuts, popcorn, raw vegetables and high fiber grains while she has inflammation. You should give her cooked and pureed fruits and vegetables to ease digestion and get her the nutrition she needs.Soups and stews are great for meals because everything is well cooked and can be super rich in nutrients.
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December 2010
Q: Our daughter has completed her 10th maintenance round of Remicade and is doing very well. What she fights the most is fatigue - always feeling tired. She still continues her daily schedule as a senior in high school, and seems to get plenty of sleep at night. I know that it is fairly common for Crohn's patients to feel tired much of the time, but I was wondering if there was a suggested supplement or vitamin that she could take to increase her energy level.
A: Fatigue is one of those symptoms that can be secondary to a lot of different things. A lot of time the Crohn’s is blamed, but if the patient is not anemic or actively inflamed it is hard to point to Crohn’s directly. Medications can give you fatigue as a side effect, but many times undiagnosed depression is the culprit. Fatigue can be the body’s response to depression. A thorough physical exploring all of these issues is warranted.
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December 2010
Q: Is there any new information on advancement flap surgery for the treatment of fistulas?
A: Advancement flaps are for fistulas that connect the vagina to the rectum or for perianal fistulas. Surgeons at IBD specialty centers are using these flaps on a selected case by case basis and only by talking to one of them would you know if you are a candidate or not.
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December 2010
Q: I am currently taking 150mg azathioprine. I've had to reduce Asacol from 3600mg to 2400mg due to the cost. Shortly I will have to totally discontinue Asacol because I cannot afford it. Should I substitute a sulfa drug to replace it? I do not qualify for the patient assistance program the makers of Asacol offer. I have not had a flare for 12 months.
A: Asacol is used in conjunction with azathioprine for several different reasons. It is perfectly acceptable and nothing to be ashamed of to tell your doctor about these cost concerns and ask whether the Asacol or one of its equivalents is even necessary at this point.
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December 2010
Q: Is it true that colitis gets less severe as you get older? I have heard from my doctor of some patients' colitis being "burned out" and no longer having flares. Could this be due to a naturally weaker immune system as people get older?
A: We know that as people get older that the immune system “burns out”. However, there are some studies that suggest that older patients have worse disease because they are not treated as aggressively or because of other health conditions. Some patients do experience a burn out of their disease, but at this time that is not the expectation.
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November 2010
Q: Why does it take so long to get a clear diagnosis of Crohn’s disease or ulcerative colitis?
A: Many of the symptoms that can lead a patient to a doctor that are from Crohn’s disease or ulcerative colitis can come from a number of different illnesses. Diarrhea can come from infections, medication side effects, deficiencies in numerous processes of digestion and absorption, Crohn’s disease, and many, many other illnesses. The same is true of abdominal pain, weight loss, growth and developmental delays, and so many more of what we call the “presenting symptoms” of Crohn’s disease or ulcerative colitis. To arrive at the diagnosis, doctors must first think of the diagnosis, exclude the other possibilities, and perform a diagnostic test that confirms the diagnosis. Usually, that requires and invasive test, such as a colonoscopy, or a test requiring exposure to X-rays, like a small bowel series or a specialized kind of CT scan called a CT enterography, a kind of X-ray test with specialized computer enhancement. Given a relative hesitation in performing these tests due to patient inconvenience and due to the overlap with other illnesses, it can often take some time to get a clear diagnosis of either Crohn’s disease or ulcerative colitis.
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November 2010
Q: What is the standard length of time to notice the effectiveness of my medication? Is there a difference response time for each class of medication?
A: Different medications work at different rates. Corticosteroids typically work quickly and some improvement is typically seen within a few days. 5-aminosalicylates also work fairly rapidly, though not as quickly as steroids. Usually some improvement is seen within 1-2 weeks, though patient often continue to see benefit out to 4-6 weeks. The immunomodulators, azathioprine and 6-mercaptopurine, work very slowly and routinely take 3-4 months to be effective. Methotrexate works more quickly, however, and patients will often improve within 4 weeks. The anti-tumor necrosis factor (anti-TNF) antibodies, infliximab, adalimumab, and certolizumab, all work quickly. Most patients will improve within 2-4 weeks, with some feeling better within a few days. When anew medication is begun, it is important to keep in contact with your physician to monitor treatment progress. If no improvement in symptoms is seen within the appropriate amount of time, then consideration should be given to adjusting therapy.
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November 2010
Q: Would going on a liquid diet help to reduce disease symptoms?
A: Studies have shown that a liquid diet (“enteral nutrition”) can reduce symptoms, and reduce inflammation in the intestine. This is a formula prescribed by your doctor which would provide all of your nutritional needs for a period of time – usually 6-8 weeks.
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November 2010
Q: My child has Crohn's disease and is much smaller than his classmates. How can we help him achieve his full growth potential?
A: Reduced growth in children with Crohn’s disease is due to a combination of reduced nutritional intake, and inflammation from the Crohn’s itself. An approach which ensures that all of your childs nutritional needs are being met, and medications which reduce the inflammation, will be most likely to help him achieve his full growth potential. This may include providing supplemental nutrition through a formula delivered through a naso-gastric tube for a period of time. In some cases, if growth is not achieved with additional nutrition and Crohns medications to reduce inflammation, the addition of human growth hormone may be helpful.
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Diet & Lifestyle

June 2022
Q: After being diagnosed at 78 years old with acute colitis - the hospital and GI Doctor recommended a low fat diet. They did not set me up with a nutritionist or give me a guideline for foods. I still have a lot of gas even with just keeping my diet simple. I know I do fill up with gas if I don't eat every 4/ 5 hours after breakfast/lunch and dinner. Are there some recommendations on diets to follow or go to foods to limit gas?
A: Excessive gas could be due to numerous causes including active inflammatory bowel disease or dietary intolerances. Gas in your stomach can be caused by swallowing air when you eat or drink via drinking through a straw, consuming carbonated beverages (soda, beer), eating too quickly, or chewing gum. Limiting these behaviors and practicing regular, mindful eating may help reduce symptoms. Certain high-fiber foods may also cause gas, including beans/ peas (legumes), raw fruits and vegetables (especially those with intact seeds and skins), and certain whole grains. Sugar substitutes, or artificial sweeteners, such as sorbitol, mannitol and xylitol, found in some sugar-free foods and beverages may also cause excess colon gas. Due to the fact that various medical conditions may increase intestinal gas, bloating or gas pain, I would recommend discussing potential underlying causes with your medical provider that way you can obtain more tailored recommendations for a potential diet plan for your inflammatory bowel disease or food intolerances. For further help finding a qualified registered dietitian nutritionist or food and nutrition practitioner who is right for you, check out: Find a Nutrition Expert (eatright.org)
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Do you have any recommendations on how to help my child get the proper nutrition while also adhering to a special diet? I find it hard to get fruit and veggies in to his diet.
A: Some additional strategies to incorporate fruit and vegetable intake include “sneaking” them into dishes and using preparation strategies that could improve tolerance (as allowed on your child’s special diet): fruit/vegetable smoothies, juicing, pureeing vegetable soups, cooking rice in vegetable broth, baking fruit muffins, etc. When following a limited diet plan, it is key to get tested regularly for vitamin and mineral deficiencies and supplementing as needed. It is oftentimes recommended to take a multivitamin with additional vitamin and mineral supplementation as needed. Additionally, if overall intake and appetite are limited it can also be helpful to find an oral nutrition supplement drink such as Kate Farms or Pediasure to help fill in the gaps.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Hello, my husband has UC and finds it difficult to adhere to specific diets. Anything that you find helps with people who have to eliminate so much from their diet?
A: Following elimination based diets can be challenging but finding additional recipes, eating out strategies, or meal delivery services that can assist with food prep can be helpful. Below are some helpful resources for structured elimination based diets, a recipe database for those with dietary restrictions/allergies, and meal delivery services. Food Allergies: Safe Eats® Allergy-Friendly Recipes – Kids With Food Allergies IBD- AID: https://www.umassmed.edu/nutrition/ibd/ibdaid/ SCD: https://www.nimbal.org/ https://gikids.org/ FODMAP: Hundreds of Low FODMAP Recipes & Resources | FODMAP Everyday Low FODMAP Diet | IBS Research at Monash University - Monash Fodmap AIP: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/ https://autoimmunewellness.com/ CDED: https://mymodulife.com/ Meal Delivery: Daily Harvest, Hello Fresh, HungryRoot, Epicured
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: I have had a full colectomy for my UC. I'm now experiencing some inflammation in my J-Pouch and my lower intestine. I'm currently treating with steroids but would like to also try an anti-inflammatory diet as well. Have other patients had much luck with this diet? Also, I was advised not to eat nuts after my colectomy but opinions vary. Have others been able to digest almonds or cashews post colectomy?
A: Inflammation in the lower intestine (or pouch) is common but really depends on multiple factors or why that is happening. We don’t have the best evidence for diet therapy in people with J-pouches, and there is argument whether there are diets that are truly “anti-inflammatory” to your bowels. While there are foods that people tolerate differently (nuts, seeds, fatty foods), I don’t usually have diet restrictions for my post-colectomy patients. While some things can perhaps cause more diarrhea, they don’t necessarily cause the inflammation. I would recommend speaking to your doctor prior to making any changes.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication (Stelara). I’ve had a small bowel resection in 2016. I am having trouble keeping my vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. Looking for ways to get extra vitamins into my diet. Would it be helpful to use dietary supplement drinks such as teami or orgain?
A: While supplement drinks such as Orgain can be a valuable way to receive additional nutrition, depending on the extent of your small bowel resection and current Crohn’s disease inflammation, your ability to absorb nutrients may be limited. I recommend discussing these concerns with your doctor and/or dietitian to have your vitamin/mineral levels checked and what might be best to supplement with (in the dose you need and form that you can absorb and tolerate best).
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: I am a distance cyclist and ride over 7000 miles annually. I've been fairly recently diagnosed with UC. I feel that riding is therapeutic for me and really enjoy day long rides. I've always had difficulty staying hydrated it seems. Also, I utilize an electrolyte drink, and frequently consume sugary gels and snack bars to maintain my energy....I'm wondering if these foods exacerbate my condition and since UC is inflammatory in nature, is my inflammatory response from exercise contributing?
A: UC primarily affects the colon, which has the primary responsibility of removing water, some nutrients, and electrolytes from partially digested food. Concentrated beverages high in excess sugars draw water and electrolytes into the gut, making stools loose and unformed, and without the colon fully functional in the case of UC, this can lead to further electrolyte and fluid losses. Your body absorbs fluid best when there is a certain ratio of sugar to salt to water. Oral rehydration solutions take full advantage of that ratio and could help keep you hydrated while biking. Ready to use products include Liquid IV, Drip Drop, and Pedialyte. A homemade recipe includes using 4 cups of G2 or Powerade Zero with ½ teaspoon of salt. I would suggest discussing what medical limitations may or may not exist given your active disease status in terms of physical activity intensity and duration with your medical provider.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: My 14 was just diagnosed with Crohns and it was pretty bad. He is on remicaid but has also suggested a diet in which half of his calories come from a “formula” such as boost or ensure. We are very concerned that boost and ensure have added ingredients and sugars that might not be so healthy. I have recently been looking at organic protein based powders. I sampled one today from a company called Orgain and I very much enjoyed it but wanted to be sure it met all of the requirements we needed.
A: Partial enteral nutrition is a treatment for IBD. Formula provides 30 – 50% of a patient’s estimated calorie needs. It can be used with medication to inducing remission. Patients consume formula and take solids generally while taking medication. Studies have shown that the formula used does not have to be elemental or peptide-based. The protein source from the recommended formula can be intact. Orgain and Kate’s Farms have intact protein and could be used.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2021
Q: I was diagnosed with crohn's in 7/2020. I find that if I eat broccoli, cauliflower, winter squash, sweet potato, the consistency of my bowel movements changes. I'm just wondering if this is normal. Is it that my system can't handle the fiber in these vegetables? I have no problem with cooked stringbeans, zucchini, yellow squash or carrots.
A: We know that various foods can increase symptoms of gas, bloating and change bowel consistency. If you aren’t having any other symptoms than change in bowel consistency (assume you mean diarrhea) and you are tolerating this without dehydration it might just be the nature of your body’s interaction with these foods. Often times people can tolerate cooked vegetables better. It would be important to know if you have any stricturing of your intestine as raw uncooked vegetables can sometimes be problematic.
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Jami Kinnucan, MD
Assistant Professor
October 2021
Q: How does one find the proper nutrition plan when you have Crohn’s & Hashimoto’s. Not only that but I have issues digesting meat, I’m gluten sensitive, lactose intolerant & I was first diagnosed w/ IBS-C (emphasis on C) I’ve gone in circles for 6 years trying to figure out the nutrition by myself & my brain is fried. I’ve also done the autoimmune protocol several times & now I’m here.
A: Nutrition therapy for people living with inflammatory bowel disease is not a “one size fits all” approach. What might work well for one individual might not work for another which is what can be quite frustrating for patients searching for a diet plan. Due to your underlying gluten sensitivity, IBS, and lactose intolerance, it might be helpful to focus on whole foods. Some Crohn’s disease patients have had success with whole food-based diets such as the Crohn’s disease exclusion diet. It models some of the components of the autoimmune protocol but is not as restrictive up front and serves as a maintenance versus elimination- based diet. The whole foods approach aims to reduce exposure to foods thought to cause intestinal inflammation, change the microbiome, alter the mucous layer in the gut, or change intestinal permeability. This diet includes fruits, vegetables, meats, complex and simple carbohydrates. If animal- based protein is difficult for you to tolerate, plant-based protein sources could serve as an alternative. This diet plan avoids gluten, gluten free baked goods, dairy, animal fats, processed meats, products containing emulsifiers, canned goods, and packaged products with an expiration date. To promote bowel regularity in the setting of IBS-C, it might be beneficial to discuss adding in fiber, additional hydration strategies, or probiotic supplementation with your medical team. Finding an outpatient dietitian specializing in IBD care could also serve as a helpful resource for tolerance follow up.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
October 2021
Q: I have Crohn's disease and have already had two surgeries. I am currently taking Stelara every 6 weeks which is not strong enough. So my doctor has added Budesonide. I am still having problems even though I take both these medications and eat basically grill chicken and salads. I can not figure out what options I have when it comes to what to eat. I am getting burnt out on grilled chicken. Can you help with some different food options?
A: Some general recommendations to help include seeing a dietitian with expertise in IBD, getting tested for vitamin/mineral deficiencies and discussing ways to supplement with your healthcare team, drinking plenty of fluids, keeping a food journal to pinpoint problem food items, and trying to slowly increase dietary variety. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked vegetables/fruit, high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Some potential foods to include during a flare include: diluted juices, smoothies, pureed vegetable soups, applesauce, canned fruit without added sugar, banana, pumpkin, oatmeal, cream of wheat, plain chicken, turkey, or fish, cooked eggs or egg substitute, mashed potatoes, rice, or noodles, white bread, and oral nutrition supplements. In general, eating smaller, more frequent meals may also be helpful.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: Hello, I was just in the hospital a few weeks ago. The doctor diagnosed me with Colitis and my questions is "What diet would you recommend?". I am writing down what I eat, but it's minimal since now I'm afraid to eat. I cut out meats, coffee, hot sauce and alcohol. What vegetables are ok to consume and which do I avoid? I appreciate any feedback.
A: Deciding what to eat and recommending what to eat can be challenging for those with IBD. Since everyone’s IBD is different, there is no one single diet or eating plan that will work for everyone with Crohn’s disease or ulcerative colitis. Dietary recommendations must be tailored just for you – depending on what part of your intestine is affected, what symptoms you have (such as, diarrhea or constipation), the status of your disease, whether you are in remission or having a flare, as well as the presence of any nutrient, vitamin, or mineral deficiencies which your team can assess. Seeing a dietitian with expertise in IBD can also help with this assessment. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked, raw vegetables/fruit (especially those with tough outer skins or seeds), high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Try slowly introducing new food items, even one at a time and eating small, frequent portions (i.e. 5-6 smaller portions if 3 big meals per day is difficult). Keeping a food log like you describe of what you eat and how you feel can be a helpful way to figure out what diet might work best for you as the best diet is one that meets your nutritional needs, while helping you better manage your IBD symptoms.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: I am recently diagnosed with UC but have had flare ups for the past year. I had a gastric bypass 7 months ago and did not have any UC symptoms until 5 months in and am in a nasty flare now. I have been researching different diets (SCD and Low FODMAP) but there are several parts that contradict my weight loss surgery diet. How do I find the right diet for me and are there online resources available to help? Is there anyone that specializes is both WLS and UC?
A: The low FODMAP focuses on reducing FODMAP carbohydrates which can be poorly absorbed in the small intestine and thus may be broken down and fermented by your microbiome producing excess fluid and gas. This is actually a diet that has been primarily studied in IBS – irritable bowel – which is different than IBD. The Specific Carbohydrate Diet has been popular among IBD patients due to growing research following the book “Breaking the Viscous Cycle” as well as its structured approach. Researchers from the DINE-CD study compared the effectiveness of the SCD against the Mediterranean diet and found statistically similar rates of symptomatic remission in Crohn’s Disease patients. The Mediterranean diet may be easier to follow for some and can be less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients. The post-operative bariatric maintenance diet (phase IV) aligns with most of the Mediterranean diet principles such as recommendations of lean meat, poultry, pork, and fish, low fat dairy products, low fat starches and whole grains, and cooked vegetables and fruits. If you can't tolerate 3 meals daily, 5-6 smaller meals daily may be better tolerated as well as separating liquid and solid food intake. Because following a therapeutic diet, experiencing active IBD, and having a surgical history of RYGB puts you at increased risk for vitamin/mineral deficiencies, it’s important to stay in close contact with your healthcare team to make sure you remain nutritionally healthy. The Crohn’s and Colitis Foundation has a Diet & Nutrition Page that can be a helpful resource for patients to stay up to date. A registered, licensed dietitian preferably with experience in bariatric surgery and inflammatory bowel disease should be able to tailor nutritional recommendations specifically for you and your needs.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I’ve been reading a book Plant Paradox for patients with UC? Is a plant-based diet beneficial for ulcerative colitis patients? What are the pros and cons?
A: Most recent scientific research has focused on the semi-vegetarian diet in mostly Crohn’s disease. A small study out of Japan suggested that patients who followed a semi-vegetarian diet were less likely to experience disease relapse than those who were eating a more meat-heavy diet. There has been lesser research done on semi-vegetarian or plant-based diets in UC. There is limited data suggesting that there might be benefits to following a plant-based diet in combination with medical therapy in cases of mild UC. It is important to note that plant-based diets are traditionally higher fiber. Since fiber is a primary fuel source for colon cells and in turn the gut microbiome, eating a fiber rich diet can have a number of health benefits. A plant-based diet can normalize bowel movements especially in constipated patients and help normalize stool in patients with diarrhea. However, tolerance to fiber sources may vary from patient to patient especially in cases of active disease. Those following a strict plant-based diet, especially vegans, may be at risk for additional nutritional deficiencies such as vitamin B12, vitamin D, calcium, and iron.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I am a 71-year-old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and the best probiotic? I am also diabetic.
A: While there is no one size fits all approach to IBD nutrition and vitamin/mineral supplementation, having UC does put patients at risk for certain nutrition deficiencies. Some of the more common nutrient deficiencies include folate, magnesium, zinc, iron, potassium, Vitamin D, and calcium. It is very important that before taking any vitamin or dietary supplements, that you first discuss it with your doctor or your dietitian. While most patients may benefit from taking a daily multivitamin/mineral supplement, supplementation needs vary person to person depending on medical and surgical histories, medications, and nutritional status. Identifying the best brand of vitamins and supplements is challenging because the Food and Drug Administration (FDA) does not regulate the vitamin and supplement industry, so I generally recommend products that have been USP verified and discussed with your medical team. There are numerous live micro-organisms that may improve the balance of good versus bad bacteria in IBD including E. Coli strain Nissle 1917, Lactobacillus, Bifidobacterium longum, and VSL#3. However, it’s important to talk to your doctor before starting probiotics, especially if you are a young child, older adult, or have a compromised immune system. Dietary sources of probiotics include yogurt, kefir, miso, and tempeh.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I have microscopic colitis and struggle with frequent diarrhea. I use OTC anti-diarrhea medications as needed. I want to take a more natural approach to controlling diarrhea. What are some foods or complementary therapies that can help control diarrhea?
A: It’s important to drink plenty of fluids to prevent dehydration such as broths/bouillon, fruit juices (diluted as needed), diluted Gatorade or G2, Pedialyte (or other oral rehydration solutions), ginger ale, and water/coconut water. Try limiting caffeinated and/or carbonated beverages, if gas or cramps occur. Try avoiding sugar alcohol (mannitol, sorbitol) containing beverages or foods if symptoms worsen or continue. Certain soluble fibers can help with diarrhea by absorbing excess water in the gut. This can be found in both soluble fiber supplements (such as psyllium) and via dietary sources. These starchy foods include items such as bananas, rice, applesauce, potatoes, white toast, noodles, and oatmeal. Avoiding insoluble fibers such as the skins, seeds, and stringy fibers of unpeeled, raw fruits and vegetables and gradually resuming consumption of higher fiber foods, once the diarrhea subsides may prove helpful. Some patients may have other underlying intolerances (such as to gluten or dairy) that could also contribute to looser stooling. It may be helpful to keep a food log to pinpoint trigger foods and eating smaller, more frequent portions throughout the day. For more tailored nutritional recommendations, ask your healthcare team about getting connected with a registered dietitian.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: The results of the DINE study indicated that both the Mediterranean Diet and SCD diets can induce remission and improve symptoms in CD patients. How do I know which diet to try? Is there a guide on how to get started with making dietary changes? Finally, will these changes need to be permanent of just when I have a flare up?
A: After six weeks the DINE-CD study showed that 43.5% of patients following a Mediterranean style diet and 46.5% of patients following the Specific Carbohydrate Diet™ achieved symptomatic remission in Crohn’s disease patients with prior mild-to-moderate symptoms on stable doses of medications. Given these similar results, it’s important to note the differences between the Mediterranean diet and Specific Carbohydrate diet. While the Specific Carbohydrate Diet has typically been popular among IBD patients due to prior research (and the book Breaking the Viscous Cycle) as well as its structured approach, public health experts often recommend a Mediterranean style diet because it has a variety of other health benefits. Researchers from the DINE-CD study also note that the Mediterranean diet is easier to follow for most and less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients with CD with mild to moderate symptoms. However, there is no universal guide that will work for everyone with IBD as individual tolerance to items such as fruits, vegetables, and other fiber sources may vary and specifics like surgical/medical history, access to food, and nutritional/functional status should be accounted for. While there is no specific instruction set on how to get started, working with a trained professional such as a registered dietitian can help you put these specific dietary changes into place as well as make tailored nutritional recommendations. As of now, the DINE-CD study recommends these diets as a long-term approach to manage symptoms of IBD.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
April 2021
Q: I am 21 years old and have been diagnosed with Crohn’s this last month. I am really leaning more towards not taking any medication. Instead taking vitamins and supplements along with cannabis. I have found that helps the most. Is it necessary to take prescription medication, if I have found a way to be in remission?
A: Many patients are anxious about taking medications in the setting of a new diagnosis. A small select group of patients with very mild Crohn’s disease do not need chronic medication, but the of patients majority do. In addition, if Crohn’s is not controlled many patients on no medications known to be effective will go on to eventually have significant complications from their disease and a lower quality of life long term. Unfortunately vitamins, supplements do not have evidence of treating Crohn’s and there still not enough data to determine the impact of Cannabis positive or negative. You may be effectively treating your symptoms but the concern is that your underlying disease will progress if it is not addressed with medications or possibly well timed surgery. The idea is to intervene on your disease, prior to the disease progressing. Please discuss with your gastroenterologist if there are other medical therapies and treatment strategies that could benefit you. In the meantime, good quality sleep, a balanced diet low in processed food, addressing anxiety and depression if present, and even adjunctive measures such as mindful meditation as adjuncts to improve your quality of care can be considered as you and your physician make decisions on treatment.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2021
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication (ustekinumab). I had a small bowel resection in 2016. I am having trouble keeping my vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. I’m looking for ways to get extra vitamins into my diet. Can dietary supplement drinks help to boost my vitamin levels?
A: Thanks for the question. Before adding additional supplements to your regimen, it may not be a bad idea to stay on high dose Vitamin D and B12 shots for 3-6 months and then rechecking these vitamin levels again. If you have already done this and your levels are still low, you may need to be on higher doses of Vitamin D and other causes of B12 deficiency should be evaluated.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for a year now and have experienced total remission from my ulcerative colitis symptoms. However, since starting the medication I have had nonstop bloating. I have tried countless treatments, including medication, low fodmap diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering that the bloating started around the time I started my infusions, could this be a side effect of the medication?
A: Bloating can be a frustrating symptom. It sounds like you have gone through quite a few different treatments for it as well. Bloating is not something we typically see with vedolizumab. It may be time to sit down with your gastroenterologist and examine other causes for your bloating.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2021
Q: I am 21 year old gay man. I’ve had ulcerative colitis for about a year now. It has been very hard on my mental health, particularly the sex aspect of my life. It feels like I’ll never be able to do the “back door” part of being intimate with someone. Will I ever be able to?
A: With full mucosal healing in the rectum and no urgency, bleeding or perianal fistulas or fissures, sexual activity is possible. I recommend discussing your sexual health as a goal of your treatment with your gastroenterologist and continuing to adjust your treatment to achieve healing of your colon. Also, getting appropriate psychological counseling is a great addition to your care.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
December 2020
Q: Is the Specific Carbohydrate Diet one that is helpful in controlling ulcerative colitis symptoms?
A: A Specific Carbohydrate Diet(SCD) is a grain-free diet that is low in sugar and lactose. It is considered an exclusion diet in which foods are eliminated from a patient's diet. It takes discipline to maintain; it requires more meal-planning and preparation. Studies with adults and pediatric patients with IBD have shown that a SCD is often more useful to manage symptoms for Crohn's than UC.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: My partner has had Crohn's for 10 years. Two years ago, he had surgery (resection). He loves food and has been focused on regaining weight lost. Now, he has put on weight and has been sedentary because of COVID-19. I worry about his diet which includes fried foods, rich sauces, take-aways, fizzy drinks, lots of snacks (crisps, sweets); odd eating times. I think he would benefit from professional help, although he is resistant. What can I do?
A: A registered dietitian is a helpful member of a patient's health care team. Consider a nutrition consult if he is interested in improving his diet. www.eatright.org is a useful way to find a dietitian in your area if your health care team does not have a dietitian. If he is interested in making a few changes, consider ordering healthier foods from restaurants for take-out or curbside. Add more fruits and vegetables. Many people have struggled with erratic mealtimes since mid-March due to pandemic.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I have ulcerative colitis that is in remission most of the time. Is coffee bad for IBD patients or just the caffeine component? Would decaf coffee be ok when I am in remission?
A: Caffeine is often considered an ingredient to avoid during a flare. Caffeine can have a laxative effect for some patients. A study looking a patients' perception of the effect of caffeine on symptoms (Barthal, 2015) showed that patients felt caffeine made GI symptoms worse. However, many adults continued to drink coffee. Decaffeinated coffee may be the safer choice. It is important to remember that caffeine is not associated with inflammation.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am looking for a protein powder supplement. I do not eat meat, though I will eat eggs. When in a flare-up, I limit my bean intake. I also avoid gluten as much as possible. Is there a certain type of protein that could be suggested for UC patients (pea, cranberry, whey, etc.)?
A: It is important to determine the amount of protein recommended. Talk to your health care team and set a goal. There are some many protein powders and drinks on the market. First, look at the protein source. Try a small amount of a dairy-based or plant-based protein powder to determine if you tolerate. Plant-based protein powder can be made from grains, nuts, soy, or seeds. Some protein powders are blends of a variety of plants. When comparing protein powders and drinks, look at the sugar content. Many supplements are high in sugar. When comparing protein powders and drinks, be aware a 2018 study showed some powders and drinks contain heavy metals like arsenic, cadmium and lead. Do your research before purchasing.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I just added Gluten free Bread to my diet. Are there other foods I need to add to my diet?
A: A bland diet is a meal plan that includes foods that are easy to digest. Choose foods that are low in fat, low in fiber, and easy to chew. A bland diet often consists of foods that are mild in flavor. Spicy foods should be avoided. A bland diet is generally a diet to exclude, not a diet to add foods. It might be useful to keep a food diary to identify any possible food triggers.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
August 2020
Q: I’m having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I have been eating a BRAT diet. Only water, low sugar Gatorade and Chamomile tea. I just purchased some Gluten free Bread. What other foods can I add to my diet.
A: Diet prescriptions are very patient and provider specific, so if you are not sure what you’re supposed to eat please ask your provider for clarification. In general, a bland diet means to eat foods that are low fat, and not heavily spiced. Foods that are baked, steamed, boiled, poached would be allowed on this diet. This is similar to a BRAT (banana, apples, rice, toast) diet which is also low in fiber. You don’t have to avoid gluten on a bland diet and you may be able to tolerate plain white bread and pasta. You can also add plain proteins (hard boiled egg, baked/boiled chicken, canned tuna packed in water, lean ground beef, firm tofu, plain yogurt, creamy peanut butter), refined grains (white rice, white pasta, white bread, rolled oats, rice cereal), cooked vegetables (cooked spinach, boiled/baked potatoes), peeled fruits, and pureed beans/lentils. Be sure to include these plant foods in your diet because they help feed a healthy microbiota (the microbes in your gut), provide soluble fiber which will help your colon recover, reduce urgency, and reduce bowel movement frequency.
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Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: I was awaiting a bowel resection, which has been cancelled due to Covid-19. In the meantime my consultant has recommended a liquid/ semi liquid diet along with 1/2 supplementary drinks per day. I am really struggling to adjust; I am constantly hunger and I am confused on what foods are okay? Am I allowed mashed potato and vegetables? Some reports say yes others say no? Am I allowed high fiber cereals like Weetabix, which I previously was told to avoid but now my diet largely lacks fiber.
A: There is no official definition for a “semi liquid diet” so please get clarification from your provider on this. They may have a dietitian that they work with that they can refer you to for individualized nutrition counseling. For our patients needing surgery we sometimes recommend a full liquid or low fiber diet until they can have surgery. A full liquid diet would include foods like milk, pudding, smoothies, yogurt, and soups that have been pureed (without chunks or hard particles). The next step up would be pureed foods, like mashed potatoes, pureed carrots, apple sauce, pureed meats, creamy nut butters, cream of rice, pureed beans. The mashed potatoes and cooked/soft vegetables may fit your provider’s definition of semi-liquid if they are pureed or easily mashable in your mouth. Weetabix would not be allowed, neither would salads, dried fruits, coconut, mushrooms, or anything that takes a lot of chewing to break down. You may need to eat several times daily, or larger portions if you are getting hungry. You can also ask your provider about nutrition supplements to help prevent weight loss before surgery (which can lead to more complications), give you energy, protein, and vitamins/minerals while you are on this restricted diet waiting for surgery. Some nutrition supplement options include Ensure, Boost, Kate Farms, Orgain, and Modulen.
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Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: My brother was just diagnosed with UC and has been out of the hospital for a week. He is unable to keep food down and has lost 25lbs and counting. What are some suggestions on things he can eat for protein and fat?
A: A registered dietitian can help your brother understand which foods to eat to help regain his weight and recover from his recent hospitalization. Protein will be important to help him recover, and energy from soft foods will help him regain weight. Sometimes high fat foods can make symptoms worse. Some foods he should try to include are: Baked chicken, firm tofu, plain yogurt, creamy nut butters, plain rice/pasta, sourdough bread, steamed vegetables, peeled fruits (apple sauce, banana, melon), and pureed beans. Beans are really good for the colon as they are fermented by gut bacteria to produce anti-inflammatory short chain fatty acids. Too many beans at once can increase gas and bloating, so he should try small portions initially (1/4 cup to ½ cup). When he’s feeling better, and if it’s ok with his doctor, he should try to eat more high fiber foods (whole fruits, salads, whole nuts, seeds, beans, whole grains) as these will help stimulate the growth of good microbes in his gut and prevent chronic illness like diabetes, heart disease, and high blood pressure.
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Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
March 2020
Q: I am wondering about the safety of using zinc supplements with Crohn’s. My daughter has Crohn”s and I have given her a zinc supplement to use to help recover faster from a cold virus. There are warnings on the bottle of zinc stating that people with autoimmune diseases should avoid zinc. Is this a valid warning for people with Crohn's?
A: On the contrary, zinc deficiency, along with iron, vitamin D and vitamin B12, can be seen in Crohn’s disease. I would recommend checking zinc levels and if appropriate and normal no need for supplementation. Short courses of zinc supplements for viral infections is considered safe.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: My 24-year-old granddaughter was diagnosed with small bowel Crohn’s, December of 2019. She met with the GI doc in Jan 2020. I went with her and the doctor did a good job of explaining her results from her tests and said his plan was to start her out on a course of Prednisone for 8 weeks. After completing the Prednisone his plan is to start her on Humira. I'm concerned that she is starting on these drugs too soon. Couldn't diet modification be tried first?
A: There are some recommended dietary modifications that can be used as a complement to traditional therapy for Crohn’s. Please see the Crohn’s and Colitis Foundation website. Most patients need biologic therapy with Crohn’s to truly alter the disease before it gets too late and we run into complications like narrowed bowel (strictures), infections (abscess) and abnormal connections (fistula). Some studies show us that if you wait an average of 13 months before starting biologic therapy then the risk for these complications rises dramatically.the biggest adverse effect in Crohn’s is under treated disease, not the medications.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
February 2020
Q: I have Crohn’s Disease. A lot of foods such as dairy give me painful side effects like gas, stomach aches or nausea. Can you help give me a list of nondairy alternatives?
A: Some patients with IBD may also have underlying lactose intolerance. Lactose is the type of sugar in milk and dairy foods.
To digest lactose, people need a specific enzyme in the small intestine called lactase which can be impacted by inflammatory bowel disease. If you have trouble digesting lactose, you may experience diarrhea, bloating, stomach pain, and gas symptoms. Limiting or avoiding milk and dairy products can help ease these symptoms.
Taking lactase supplements before having milk and dairy products may also help. Milk and dairy containing foods are a primary source of calcium, so making sure to include other sources of calcium in the diet or speaking with your healthcare provider about a multivitamin would be beneficial. Dairy/lactose free alternatives include lactose-free milk,
nondairy creamers, nondairy whipped toppings, soy based sour cream, and other almond, cashew, oat, pea protein, rice, or soy based dairy alternatives. Some people with lactose intolerance can safely eat dairy foods that contain a little lactose (less than 1 gram lactose per serving) such as aged cheese. Be sure to check product ingredients. Avoid foods made with butter, cream, milk, or milk solids. Also avoid products when the ingredients list states, “may contain milk.”
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I recently was diagnosed with IBD. I am in college and have been doing a lot of walking around campus which is tough due to my joint pain. I have been eating a lot of sugar lately too. Could my joint pain be related to dietary sugar intake?
A: It has been demonstrated that dietary sugar consumption contributes to increased inflammatory processes in humans. The evidence suggests that eating too much added sugar and too many refined carbohydrates can cause inflammation in the body. Processed sugars trigger the release of inflammatory messengers called cytokines. According to research, it has been shown that dietary sugar intake especially sugar-sweetened beverages may be a key stimulus of subclinical inflammation, as measured by the inflammatory marker C-reactive protein (CRP). Added sugars contribute sweetness and although they add calories, offer minimal nutrition. Make sure to read nutrition facts labels carefully. Many foods now list added sugar separately. You also can find added sugar by reading the ingredients. On an ingredient label, sugar may appear under many names. Some of the most common ones include cane sugar, evaporated cane juice, corn syrup, high-fructose corn syrup, raw sugar, brown sugar, honey, maple syrup and brown rice syrup. Dietary Guidelines for Americans recommends limiting added sugars to no more than 10% of daily calorie needs, which is about 12 teaspoons (48 grams of added sugar) on a 2,000-calorie diet.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I have mild-moderate Crohn’s since the end of 2014. There are about 60+ foods that make me sick ranging from; milk, pasta, apples/berries, most greens, eggs, bread, oatmeal, corn, nuts, to beef/pork, etc. My intolerance is the same with/without meds. Can something else going on?
A: If gastrointestinal symptoms are still present after food intake regardless of disease activity, discussing this with your health provider could prove to be beneficial. Some patients with inflammatory bowel disease experience intolerance to food items due to underlying disease related inflammation; however, when IBD is in remission and symptoms are still being experienced after eating, this may be due to a specific intolerance, such as lactose or fructose intolerance, or Irritable Bowel Syndrome in addition to IBD. A low-FODMAP diet may help with IBS and in some cases can help reduce IBD symptoms, but research doesn’t support its use for reducing IBD inflammation. This diet is not typically recommended if you are in a flare, but it can be helpful if you struggle with gas, cramping, and bloating and dietary intolerance. FODMAP is an acronym for Fermentable, Oligo-, Di-, Monosaccharides and Polyols. The language may sound complicated, but it is a diet that cuts back on a group of sugars that can be poorly absorbed by your GI tract. This includes foods containing fructose, lactose, sugar polyols (sorbitol and mannitol), fructans (found in garlic, leeks, artichokes, and wheat), and galacto-oligosaccharides (found in lentils, chickpeas, and black beans). Meeting with a dietitian can help identify which of these food items could be potentially worsening symptoms, and which foods can be reintroduced without exacerbating symptoms. Keeping a food log may also be helpful to help correlate specific symptoms with food items.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: My 7-year-old has mild ulcerative colitis. Would it be safe to try intermittent fasting diet with him?
A: Research has shown that dietary changes can have a big impact on inflammatory bowel disease management. Intermittent fasting (IF) is an eating pattern that cycles between periods of fasting and eating, traditionally used for weight loss. To find out whether intermittent calorie restriction or fasting plays a role in reducing inflammation, a University of Southern California preliminary study published in Cell Reports in March of 2019 tested cycles of a low-calorie, low-protein, plant-based diet on mice with inflamed bowels. In the mice given cycles of the fasting-mimicking diet, gut inflammation and other signs of IBD appeared to improve. Additionally, researchers tested three cycles of a fasting-type diet in 100 healthy people. People who started the study with higher levels of certain inflammatory markers had noted improvements in certain serum indicators by the end of the fasting diet, which may point to a role in lowering inflammation. However, any type of fasting or restrictive diet can be difficult to adhere to and may not be suited for IBD patients given their increased risk for malnutrition. More research is needed on this particular diet such as a clinical trial to test the safety and efficacy of these fasting diet cycles in people with IBD. Intermittent fasting is not as of now recommended as a way to help treat IBD and is also generally not recommended for individuals in periods of rapid growth, such as children and adolescents.
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Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2020
Q: I am in a relationship with my girlfriend who has UC and she has just lost all sex drive. She says she still finds me attractive and everything but it hurts and she just doesn’t “get in the mood” anymore really. What can I do? I have hardly had sex 6 times in two years and it is REALLY effecting my mental and daily life as well.
A: Thank you for this question on a sensitive and important topic, intimacy and sex in IBD. I appreciate that you are asking what YOU can do. It’s a good place to start. Expressing how you feel about the current state of your relationship in a compassionate way may open the door to learning how your girlfriend is feeling. Perhaps she is struggling with symptoms that she feels embarrassed by? Maybe due to medication or disease activity she has low energy, fatigue, pain, low sex drive or body image concerns? She may feel sad, depressed, worried or frustrated? All of which can dramatically impact how one wants to engage with their partner. Your girlfriend may desire to be intimate with you, but her physical or emotional symptoms may be a major factor. By opening the door of communication, together you can discuss what your next steps are as a couple. Establishing care with a therapist who understands the nuances of chronic health issues may be helpful for you. Therapy goals might include having a safe place to express your feelings, learning communication strategies and developing ideas for different types of intimacy that may aid in strengthening your relationship. If your partner believes that her disease is contributing to her intimacy concerns, talking with her medical team is important. Talking with a gastroenterologist about sex might seem uncomfortable, but this is an important conversation. They need to know many of the most personal aspects of your life because they may be able to help. The doctor may run labs, assess disease activity and/or have some suggestions to aid in stabilizing health which may with time boost mood and sexual desire. If pain or discomfort contributes to the lack of sexual interactions, her doctor may recommend working with a pelvic floor physical therapist. Your girlfriend may also benefit from a mental health provider to discuss the various stressors/complexities associated with having IBD.
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Megan Riehl, PsyD
Assistant Professor of Medicine
January 2020
Q: I have Crohn’s and been in a flare up for so long. I am getting depressed. Most days I don’t want to get out of bed to go to work because I am so tired from everything including diarrhea, fatigue, abdominal pain, weight loss and sleeplessness. Doctors are trying to find the right medications to get me in remission. Is there medication I can take or something I can do to get me out of my bad mood. I feel so down and defeated all the time.
A: I am sorry you are not feeling well and commend you for being aware of how your physical health can impact your mood and emotional health. Ensure that you are discussing both physical and emotional symptoms with your gastroenterologist. They may need to run labs (iron deficiency anemia, Vitamin D, B-12, TSH, etc) to see if there are deficiencies that are also contributing to your fatigue, healing and mood symptoms. By treating the deficiencies physical and emotional symptoms may see improvement. There are different types of medication that can be prescribed to aid with mood stabilization that you can speak with your physician about. However, working with a mental health professional to discuss your depression, learn ways to cope with emotions related to the complexities of IBD and over time gain confidence to manage emotions and stress related to disease management. Sometimes therapy is enough to get you feeling well again, other times a combination of medication and therapy is best. Be open with your physician; ask if they have a referral recommendation for a mental health provider. If you and your team think medication is a next step for your treatment plan, consider consultation with a psychiatrist. You can check www.romegipsych.org to see if there is a mental health provider who specializes in working with people who have gastrointestinal conditions.
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Megan Riehl, PsyD
Assistant Professor of Medicine
December 2019
Q: What is your thoughts on using Senna Tea for constipation?
A: Senna tea can help with constipation but if you have an obstructive stricture, this will not be a good idea. There can also be side effects of the tea so be sure to discuss the use of any products with your health care provider.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter ?
A: Almond milk or peanut butter will not cause any harm. Nut by themselves are not harmful, we recommend avoiding nuts in patients with strictures in case undigested material gets impacted.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
November 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter?
A: Please note - nuts and seeds do not increase inflammation or worsen colitis. They are great foods that have fiber, healthy fats, protein, and antioxidants. That said, during a flare the whole food forms may be harder to digest or feel a little irritating to the GI. So the modified texture such as smooth nut/seed butter (almond butter, sunflower butter, cashew butter, etc) or milks (coconut milk, hemp milk, etc) can definitely be more conducive during periods of inflammation. Make sure to reduce added sugars, processed oils, and additives such as carrageenan when choosing nut/seed butters or milks.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
November 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: My recommendations for patients who have both constipation and narrowing of the GI are the following: 1) Slow down and chew your food well. 2) Drink enough liquids (ideally water) while eating. 3) Modify textures, especially when it comes to fiber. Therefore, cooking, liquefying (smoothies, soups, etc), grinding, pureeing, or finely chopping can help boost fibrous foods without making matters worse. 4) Spread out your fiber throughout the day. 5) Move after meals to aid digestion. Ideally, walk 5-10 minutes after bigger meals. 6) Make sure you are squatting on the toilet to aid proper evacuation of bowels and reduce straining. You can use something like the Squatty Potty, but it can also be a simple step stool. 7) Consult a dietitian. There may be supplements or other specific suggestions that can help you. Constipation varies patient to patient, so I may use magnesium, fiber supplements, abdominal massage, or coffee to stimulate bowels, to mention a few, but it may not be favorable to everyone.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
October 2018
Q: My daughter was diagnosed with UC in December 2017. She is currently taking Apriso and ProctoFoam. Her symptoms have decreased at times, but not always and she is currently experiencing diarrhea, abdominal pain, and fatigue. I have heard from some people mention Tumeric for fighting inflammation throughout the body. What are your thoughts on Turmeric for UC patients?
A: Anytime a patient is interested in adding an herbal supplement or botanical, discuss with your medical team. Tumeric is derived from the rhizome of a plant from the ginger family. It has been used in Asia to season food. It has a bright yellow color. Curcumin is a compound found in turmeric and it has been touted for its anti-inflammatory effects. There are some studies that indicate mucosal healing with the addition of turmeric/curcumin to medications. Turmeric in amounts that have been tested are generally safe when taken orally. High doses may cause GI symptoms. Check the commercial products for any additional ingredients.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I have Crohn's disease and have read about the benefits of drinking celery juice first thing in the morning on an empty stomach. Do you recommend trying it? Also can juicing fruits and veggies (as opposed to eating them) be a good way to get the nutrients they provide?
A: I have not read any evidence-based journal articles about celery juice. I cannot recommend celery juice. Juicing fruits and vegetables is popular. Juicing is not any healthier than eating whole fruits and vegetables. If you prefer to juice, consider making smoothies by adding yogurt to the homemade juice.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I’m trying to learn more out about diet for my Crohn’s Disease. I know it says to stay away from sugars but are there any sugars allowed? Like regular sugar just not processed?
A: No one diet has been scientifically proven to manage Crohn’s disease. Some patients are interested in carbohydrate restriction like the specific carbohydrate diet, gluten-free diet, and FOD Map diet. Some patients have seen reduction in GI symptoms when they modify their diets. Always discuss with your medical team.
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Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
September 2018
Q: I am 20 and was diagnosed with mild Crohn’s this summer. I am on Mesalamine (highest dose) and also currently on Budesonide for 8 wks. to get over my flare. I’ve been researching diets and lifestyle changes so that I can try to feel my best. I started trying to go completely gluten free, but is that even necessary? I have read so many different opinions on diets etc. I have been buying organic and cleaner foods but not sure what to do!
A: The overall goal with IBD is to move to remission. This does best with a combination of medication and diet, but diet does not alone enable remission. There is no research with Crohn's & Colitis patients supporting the need to avoid gluten or dairy in the diet, but many feel better with lactose free dairy products or lactose free plant milks. There are many refined grains that can be helpful to improve symptoms and some contain gluten i.e. white toast and white pasta and some do not i.e. white rice and white potatoes, so I agree that going gluten free is not necessary. Budesonide is a medication prescribed to reduce inflammation and fiber is irritating to the intestine, so a diet lower in fiber including refined grains, cooked vegetables and soft fruits without seeds and skins is recommended until weaned off budesonide. Within a lower fiber diet, choose less high fat or spicy foods, and limit or avoid drinks with caffeine, sugars or sugar free additives. Cooking at home rather than eating meals out enables you to know what was added to the food and is a better choice most often. When tests have confirmed remission, then gradually increasing fiber in the diet with whole grains, and more variety of fruit and vegetables is recommended.
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Pamela A. Duncan, MS, RD, LDN
Dietitian III, IBD Clinic, Vanderbilt University Medical Center
September 2018
Q: I was diagnosed with ulcerative colitis in 1984 when I was 14 and in 2004 had a total colectomy. My small intestine was reattached and I now have a J pouch. Since 2007 I am constantly battling intestinal blockages and dehydration. What are some things I can try with my diet to keep this from occurring so often? Is there a specific diet plan I should be following or things I should be eating that I am not currently taking? What is a good diet plan for dealing with this issue?
A: A J pouch often can result in increased trips to the rest room which can result in dehydration. Consuming adequate fluids daily which are not high in sugar are beneficial. Oral rehydration solution contains added salt and may be helpful for maintaining hydration. It can be purchased ready-to-use and there are many recipes available on the internet listed with the Ostomy Association. Secondly, intestinal blockages require a diet very low in fiber which includes foods that are very easy to digest from all food groups: protein, refined grains, soft fruits and vegetables without skins or seeds and foods with Calcium. Once you are staying well-hydrated, you may be able to increase fiber, but I would check with your doctor first and then seek care from a Registered Dietitian to help you put this into practice.
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Pamela A. Duncan, MS, RD, LDN
Dietitian III, IBD Clinic, Vanderbilt University Medical Center
June 2018
Q: I was diagnosed with Crohn's over a month ago and have drastically adjusted my diet along with the medication. My biggest heartbreak is coffee. Do people find it problematic to drink it (only one cup a day) while in remission without it contributing to a new flare up or is it best to be remove it from my diet forever?
A: There is no clear research on coffee/caffeine and IBD. I am usually okay with most of my patients having a cup of coffee (or two) a day. That said, there are usually a few things that I clarify about coffee/caffeine beforehand: 1) Caffeine stimulates the bowels, so if you have urgency and/or diarrhea, which usually accompany a flare, I would avoid. It’s just basically fueling the fire and not helping the symptoms. 2) Coffee is not all created equal. A lot of the negative health associations with coffee are more related to what you put into the coffee – sugars, artificial sweeteners, fat, etc. So, a little bit of milk, lactose free milk, or milk alternative is the better choice. And remember, 1 cup equals 8 ounces (portion control). 3) Coffee/caffeine can exacerbate stress, anxiety, and alter sleep. So, if you are experiencing any of these issues, I would decrease or avoid.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
June 2018
Q: I’m wondering what oils my daughter can have. She has been diagnosed with ulcerative colitis. I know olive oil is good but vegetable oil is not. What about cotton seed oil, soy bean oil? Palm oil, sunflower oil and hydrogenated vegetable oil? Any help would be greatly appreciated.
A: • Flaxseed oil is a great option for drizzling and salads. It’s high in plant-based omega-3 fatty acids, but you can’t cook with it, because it oxidizes quickly. • Extra virgin olive oil is my favorite and a great choice for low-smoking points, so usually okay for drizzling, salads, and light sautéing. It has high amounts of anti-inflammatory monounsaturated fats that are also easier to digest/break down. • Avocado oil is packed in heart-healthy monounsaturated fats, but unlike olive oil can be used at a higher smoking point (about 375 to 400F). It has a neutral flavor, and has been less chemically processed than canola or other vegetable oils. • Cold-pressed safflower or sunflower oil is low in saturated fats and high in omega-9 fatty acids. They both have higher smoking points (about 475 to 510F), so can be used frying (in moderation) and sautéing. • As far as soy bean oil, it’s a great source of polyunsaturated fatty acids as well as vitamin E, but much like other vegetable-based oils, I would choose cold-pressed or expeller-pressed oil. Ideally choosing organic and/or non-GMO varieties and always avoid the words hydrogenated or partially hydrogenated, which usually imply presence of trans fats, which we want to avoid. It also has a higher smoking point at 450F.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
June 2018
Q: I was recently diagnosed with a mild case of Crohn's ileitis. I was wondering what diet and lifestyle changes I should make to accommodate to my disease?
A: 1) Eat a cleaner diet. Try to choose whole foods and whole ingredients. Reduce/avoid processed, packaged, artificial, dyed, and fast food. This naturally forces you to cook a little more and have a better general awareness of food. I usually do suggest to try and choose local/organic options, especially when it comes to animal products and use the Dirty Dozen/ Clean 15 for all produce, which will help reduce pesticide exposure. 2) Avoid foods that exacerbate symptoms. It can help to keep a food/symptom diary. Some common triggers are: a. Alcohol and/ or caffeine (stimulants) b. Dairy products, usually high in lactose such as milk, ice-cream, creamy sauces c. Fried or high-fat foods, such as fried foods, red meats, processed meats, pastries d. Large quantities of roughage, such as salads, beans, whole nuts/seeds. Too much fiber, especially during a flare, usually exacerbates symptoms. e. Refined sugars and flours. Some patients are sensitive to high amounts of gluten, such as bagels, pastas, cookies, etc f. Additives and preservatives such as MSG, antibiotics, emulsifiers, artificial sweeteners, and coloring agents 3) Instead of altogether avoiding foods, try to change the quality and/or texture of the food. For instance, patients during a flare may not be able to have a salad, but you may be able to include a little spinach in a smoothie, add yam and squash to a chicken soup, or have soft/skinless fruit such as bananas, cantaloupe, or papaya as a snack. Cooked, blended, stewed, ground, and pureed food are can be easier to digest. 4) Focus on how you eat as much as what you eat. Chewing your food, slowing down, eating mindfully, and avoiding overeating are as important. This aids the digestive process and essentially creates a better relationship with food. 5) Find something that helps you relax and find your happy place, it can be meeting with a friend, finding a support group, meditation or Yoga. Stress mgt is a key part of your overall healing.
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Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
March 2018
Q: I have Crohn’s and I am considering doing a liver cleanse. Is it safe to do so or not recommended?
A: A liver cleanse is not recommended. There is no scientific evidence to support that a liver cleanse is beneficial for Crohn’s disease.
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Tina Patnode, RDN, LD
Registered Dietitian Nutritionist
March 2018
Q: I have had Crohn's disease since 2003. All of the research I have done said to cut back on the fiber. I was just put on a high fiber diet. That has left me confused. Is fiber bad for crohn's disease?
A: There is an abundance of information online about dietary fiber’s impact on specific disease states. I understand how it can be confusing. With regard to Crohn’s disease, increasing dietary fiber may be beneficial while the disease is in remission. During a flare-up, a lower-fiber diet (10 grams per day) may help to minimize digestive symptoms such as diarrhea or loose stool. As symptoms subside, you want to gradually increase dietary fiber and drink plenty of fluids. The goal is to eat a well-balanced diet to include foods that are anti-inflammatory. This includes vegetables, fruits, fish, whole grains, legumes, nuts, seeds, herbs and spices such as turmeric, ginger, and garlic.
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Tina Patnode, RDN, LD
Registered Dietitian Nutritionist
February 2018
Q: Our 9-yr old was diagnosed with Crohn's 8 weeks ago, and is on Remicade. He is on a mostly liquid diet. Because the protein drinks are coming 3 times/day, he started fighting us and not wanting to drink them. Each and every bottle is a battle that has just worn us down emotionally. We're at our wits and creativity end trying to find ways for him to take them. We've tried Special-K chocolate, Ensure Clear, and Carnation Breakfast. This is so very, draining. Any advice is much appreciated.
A: Having a child with medical issues can create many obstacles that sometimes we just need help to navigate. Communication with your son’s gastroenterologist or pediatrician is a great place to start. Discuss your concerns, what you have tried and how this is impacting the family. They will likely be able to provide some suggestions or direct you to a specialist who can help. To address the dietary aspects, ask if there is a pediatric dietitian who specializes in IBD or feeding issues. This person may be able to create a tailored diet plan taking into consideration your child’s age, diagnosis, medication, and medical recommendations. Also, a child psychologist would be a wonderful addition to your child’s team! Perhaps there are some emotions that your son is having a difficult time processing which impacts other aspects of his life (i.e. eating). The child psychologist can aid your child in working through the various aspects of having IBD in a developmentally appropriate way. The psychologist can also work with the family to aid with implementing strategies to make things less challenging at home.
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Megan Riehl, PsyD
Assistant Professor of Medicine
February 2018
Q: I was in remission for about 8 months. Recently I had a flare and my doctor wants me to go on Imuran. I have been to the point of having a mental and nervous breakdown over this due to my fear of the cancer side effects. The 2 specialists I saw say to weigh the risks and I know the risks of the flare, however, I literally cannot function or enjoy life at the prospect of taking a medicine that could kill me. This is dramatic but I haven’t been able to cope with this and need help.
A: Taking a new medication, especially one with scary, possible side effects, can be anxiety provoking. Fears related to the unknowns and uncontrollable aspects of the medication can drive that anxiety as well. If you are feeling debilitated by the anxiety and worry over this medication, seeking the support and guidance of a psychologist can be very appropriate and helpful. Look for a mental health provider who specializes in gastrointestinal disorders, chronic health issues and/or anxiety. A provider who specializes in the use of Cognitive Behavioral Therapy (CBT), a type of therapy very commonly used in medical settings and to treat anxiety. CBT is used to address your worrisome thoughts and provide you with tools to better manage them. Mental health care when managing a chronic disease, like IBD, is often just as important as your medical care. Your therapist can aid you in developing tools to better manage stress and adaptively cope with worry and fear. When you feel better about your self-management skills, you can regain focus on the enjoyable aspects of your life.
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Megan Riehl, PsyD
Assistant Professor of Medicine
February 2018
Q: My mom thinks I am researching and educating myself on Crohn's because I want attention, wants to lay down and be a "bum" all my life and want pain meds and thinks I'm making up the pain and the whole diagnosis. Says she knows people who have it and are never in pain so I must just want a fix and thinks I'm making myself sick (throwing up and diarrhea) She's causing me more stress and depression. What can I do to inform her better or something?
A: Sometimes having IBD can feel as though you have an invisible illness. That can make it hard for family and friends to truly understand all the ways in which IBD impacts your life. There is a great deal of education that is required to successfully navigate IBD. Asking your loved one to learn with you can be a good starting place. Also, consider outside resources for support, such as friends, the IBD community, and a mental health professional. Here are a couple suggestions to aid with building a support network: • Invite your family member to an appointment with your gastroenterologist. Ask your provider to discuss the disease, impacts on the family, treatment and potential side effects of treatment. • Ask your loved one to read this document about being diagnosed and managing IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/newly-diagnosed.pdf • Invite your family member to a Crohn’s and Colitis Foundation patient education event in your area. • Join an IBD support group to talk with other people who have IBD and have had similar experiences with family and friends. • Invite your family member to sit with you and watch IBD School videos from IBD experts at the University of Michigan: http://www.med.umich.edu/ibd/school/index.html • Communicate how it makes you feel when your loved one doesn’t take your disease seriously. Let them know how they can best support you. • Consider establishing care with a mental health professional who works with people with chronic illness to learn skills to manage the many complexities of IBD.
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Megan Riehl, PsyD
Assistant Professor of Medicine
November 2017
Q: How common are emotional problems while on biologic medication? I’ve been on a biologic for 3 years and I've experienced severe mood swings and deep depression and feel like I'm not myself. I get angry for no reason and am very irritable and I cry all the time. I need to take this medicine because I have severe Crohn’s but I can't take the emotional side effects anymore.
A: Emotional problems related to being on a biologic are not commonly reported in the literature. However, there are many other factors to consider in terms of mood and the complexities of having IBD. If you are feeling significant changes in your mood (i.e. depression, anger, anxiety, etc), you should address this quickly with your primary care provider or your gastroenterologist. Working with your providers to assess mood, the factors that may contribute and how to stabilize your emotions is important! They may recommend a review of your medications, a consultation with a mental health provider and/or an assessment with a psychiatrist. You must be your own best advocate. It is necessary to speak regularly with your providers about not only changes in your physical health, but changes in your emotional and mental health. This ensures that you are receiving the right care from a variety of specialties to address all aspects of your health.
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Megan Riehl, PsyD
Assistant Professor of Medicine
October 2017
Q: I have Crohns with strictures all over small and large bowel. I have been taking Mesalamine and Imuran. I will be having an MRI soon to check if there is improvement. Is there anything I can do in terms of Diet and Lifestyle to help heal the strictures?
A: This is a great question – the answer will really depend on where the stricture is located, how many, how tight they are and if there is an active inflammatory component to them or are they the result of chronic changes from disease activity. The recommendations we make for people with Crohn’s disease strictures is to make sure that they are careful about fiber intake and higher-residue food intake. Working with a registered dietitian can help identify a dietary strategy that factors in personal preferences but also safe foods. We recommend small frequent meals, chewing food well, eating slowly, and monitoring for vitamin and mineral deficiencies that can occur due to a restricted diet.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2017
Q: I have Crohn's Disease and sometimes develop canker sores that form on the tongue, lips, and gums. Can you explain what they are and how they are treated?
A: Crohn’s disease, either directly or indirectly can cause oral sores. Oral sores are rather common, present in 20-50% of Crohn’s disease patients. The sores are generally just breaks in the lining of the mouth that result in an ulcer. Since Crohn’s disease can affect any part of the gastrointestinal tract from your mouth to the anus, these sores may be a result of the disease. Crohn’s disease can also result in nutritional deficiencies (i.e., folic acid and other B vitamins) that can make a patient more prone to mouth sores. Additionally, methotrexate, a medication used in Crohn’s disease, is a common culprit for mouth sores. Generally, if the sores are from Crohn’s, treatment of the Crohn’s itself can causing healing of the ulcers. If you’re taking methotrexate, you can increase the amount of folic acid taken on the day of the methotrexate itself (to say 5 pills that day). If neither of these are the issue, your doctor can evaluate for nutritional deficiencies that may be playing a role.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: How definitive is a diagnosis of Ulcerative Colitis? I have been in remission for 11 years, and have not taken any medication for 5 years. Does it make sense to get reevaluated to see if this diagnosis can be removed from my medical history?
A: Thanks for your question. Without seeing the records, your first question is a difficult one to answer. Occasionally, the diagnosis of ulcerative colitis may be more difficult to make. Having the diagnosis of ulcerative colitis in your records can be challenging for several reasons. If you have no symptoms and your colonoscopy continues to show no active colon inflammation, then your disease may be in remission. I would discuss the validity of the ulcerative colitis diagnosis with your gastroenterologist who has access to your previous records.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2017
Q: My son has Crohn's and IBS. We have started really focusing on his diet, more veggies less meat and clean, no preservatives. Is there a certain diet that is better than others?
A: Diet and nutrition definitely are important in IBD management. However, more research is needed to better understand the impact of specific foods and diets. One interesting study that recently came out (though looking more at UC patients) showed that patients who ate more dairy based fats or coconut oil were more likely to have a flare. There is also some basic science data to suggest that red meats are more pro-inflammatory and foods with emulsifiers (found in certain processed foods) can breakdown the mucous layer that protects the gut. There is also great interest in the Specific Carbohydrate Diet (SCD) which is about to be formally studied in a trial sponsored by the Crohn’s and Colitis Foundation. Ultimately, each person’s case is different and one food or diet that may improve or worsen symptoms for one patient may not work for another patient. I frequently recommend consultation with an experienced nutritionist to my patients.
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Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
April 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
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Megan Riehl, PsyD
Assistant Professor of Medicine
March 2017
Q: I have IBD and I’m looking for good breakfast ideas. It seems no matter what I eat in the morning it goes right through me.
A: I would recommend first discussing with your physician whether your disease is well controlled and in remission or whether you have active disease. Ideally if your disease is well controlled you should be able to tolerate any type of breakfast. You are not alone. Many patients with active disease tend to have most bowel movements first thing in the morning or after breakfast. I would recommend minimizing caffeine and hot fluids which both can accelerate intestinal transit. Fatty foods may also result in bowel movements soon after eating. Many of my patients anecdotally tolerate oatmeal or cream of rice the best. Bananas and peanut butter also seem to be well tolerated. For patients who have narrowing in the bowel, smoothies are also great breakfast options.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
February 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Do patients have better control of their disease when they communicate with other patients? (through support groups, camps. Online forums, etc)
A: This is an important arena of study, in that support groups can be very helpful at reducing anxiety and depression, factors we know are associated with disease course. Prior literature has shown that summer camps and mentorship programs in pediatric IBD have been effective for parents and children alike. Social interaction has also been associated with improved quality of life in IBD. Patients' experience of helplessness has been shown to reduce their ability to benefit from social support. Better studies are needed in order for us to design the best resources for patients. Studies of social support, outcomes and preferences for support could be designed in CCFA Partners.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Are there any IBD patients on the paleo or specific carbohydrate diet? Has this diet positively affected your symptoms?
A: The question of dietary management of IBD is of utmost importance to patients and providers alike. In response to a prior question posed on this portal on the specific carbohydrate diet (SCD), CCFA Partners, the CCFA and the Patient Centered Outcomes Research Institute have funded an important study to better understand the clinical benefits of SCD. This study, led by Dr. James Lewis from University of Pennsylvania, will randomize patients to either the SCD or a Mediterranean diet. Over the course of the study, all food will be provided through a caterer to help with adherence to the diet. Important outcomes on symptoms and on markers of inflammation (in the blood and stool) will be used to measure response to the diet. This study will be launching this year. Citizen scientists from the CCFA Partners community posed the original question, and are now on the research team for this important study. Stay tuned as we learn more about the topics that you are most interested in!
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Our 14 yr old son was dx with CD in 7/2016. Also having back pain and had an X-ray. In 1/2017 had another X-ray that showed major deterioration even though he had no IBD issues in months. He has compression fractures in his spine. He was on steroids for 2 months but has been doing well since starting Remicade. He’s gained 22 lbs but no height growth. The dr. want to put him on bisphosphonates. Is this a standard treatment in CD patients with a fracture? What else should we look into?
A: Vertebral compression fractures can be caused by osteoporosis, trauma, or diseases affecting bone. Other bone diseases could play a role especially given the short time since diagnosis and should be excluded. Young patients should get a bone age and a DEXA scan shortly after diagnosis to see if there is delay in bone growth and to see what the baseline bone density is. IBD that was not causing obvious gastrointestinal symptoms prior to diagnosis is possible. If there was a fracture after an accident but bone density was not low, bisphosphonates would not be indicated IBD can affect bone density for multiple different reasons with about half of patients showing a significant reduction in their bone mass. Bisphosphonates would not treat his current fracture but would try to address the low bone density so a future fracture is less likely. This class of medication is not commonly used in pediatrics especially while bone is still gaining in height and mass. Its use is more often reserved for adults or patients with specific bone diseases. It is thought to be reasonable for use in chronic illness if there is history of multiple low trauma fractures or a vertebral fracture history combined with a very low bone density. I would say the next appropriate step is an appointment with a pediatric endocrinologist. Their role is to help advise use of these medications and help weigh risk and benefits and provide other options as well as rule out other issues that could be playing a role. One can also try to improving bone density with increasing weight bearing exercise. This could be done with a physical therapist to make sure this is done safely in someone with a fracture history. Having optimal control of the inflammatory bowel disease itself will decrease cytokines which are bad for bones as well as helping avoid steroid use. Good nutrition with vitamin d and calcium with additional vit d as needed and avoidance of smoking and alcohol are also helpful
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Philip Stein, MD
Attending Gastroenterologist, St. Christopher's Hospital for Children
January 2017
Q: I have Crohn's and had a ileo-colic resection of about 17 cm two years ago. I am in remission and eat a healthy diet but my Vitamin D and B-12 are borderline low. (B-12 209 pg/ml, D 23 ng/ML) Do I need B-12 shots, or how much oral supplements do I need?
A: Vitamin B12 is an important vitamin needed for red blood cell production, proper functioning of nerves, and even making DNA in new cells. The human body cannot make its own vitamin B12, and in the diet vitamin B12 comes in the form of animal based foods. Most B12 is absorbed in the distal terminal ileum of the small intestine, an area often affected by Crohn’s disease. Lab measurement of B12 levels is not exact, and we usually aim for levels >300 pg/mL in order to be on the safe side because B12 is so important. The most reliable method of supplementing vitamin B12 is through shots, but it is also possible to take high dose pills (1000-2000mcg a day), pills that go under the tongue and are directly absorbed into the blood, or by nasal spray. No good studies have been done comparing the efficacy of these methods in Crohn’s disease patients, so it is important to have the B12 level re-checked after you and your doctor have selected a way to supplement your levels. Vitamin D is important for bone health, and may be involved in the immune response as well. We generally aim for vitamin D levels above 30ng/ML, which can likely be achieved by taking a daily oral supplement of Vitamin D3 600-1000 IU daily if you level is between 20-30.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2016
Q: My 14 year old daughter has Crohn's and takes methotrexate injections. She struggles to eat the most basic foods without feeling unwell. Is there any meal replacement shakes that is suitable for have age?
A: There are definitely several options of nutritional shakes available for her age. Any nutritional supplementation or especially "meal replacement" should be done with the supervision and consultation of a registered dietitian. I would recommend asking your daughter's gastroenterologist for a referral to meet with one to discuss further.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have tried all the meds, biologics included and after many years of little relief, I searched for natural alternatives. My UC maintained remission for 4 yrs and I have been able to control my pain and inflammation with Matcha green tea. I drink 2 cups a day but this isn't your typical over the counter tea. I buy it in powder form. Is this something you have heard of before?
A: I know patient who have received relief with homeopathic options like green tea or peppermint tea or oil. These options have not been well studies and it is worth checking with your gastroenterologist to make sure they are safe and will not cause any inadvertent harm.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: With the combo of medication + having a chronic illness, what is a good way to cope with anxiety and depressed feeling?
A: The best ways to cope with anxiety and depressed feelings are to work with a counselor or therapist to figure out what aspects of what is causing those feeling are controllable and which are not. For things in your control to change, finding distracting activities (things you have a passion for), exercise, and good social support is best. For things you cannot control, like having IBD, finding the best coping techniques to not get as stressed out about it. These techniques I describe are called cognitive behavioral therapy. These techniques are available through counselors or through self-help educational tools like golantern.com.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I understand the myriad of reasons that doctors are opposed to narcotics to treat pain related to IBD. What are we to do when, more often than not, they're the only thing that bring relief?
A: You are correct- there is a growing list of serious problems caused by opioids including tolerance (needing higher and higher dose to treat the pain), brain effects, increased risk of infection and increased risk of death. In vulnerable patients, they can lead to addiction. With chronic use, they can lead to gastrointestinal problems such as constipation and obstruction. There are patients who do well with low dose opioids and careful monitoring but given the risks, it is important to be followed by a pain specialist and to consider other non-opioid options when possible.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: I was wondering if an appendectomy can improve UC. I am a 32-year-old woman who has had UC since 2003 (when I was 19). I had very active disease from 2003-2006, and then, with the help of 6mp, had occasionally active disease from 2007-2013 (maybe 2 mild flares per year). In early 2013, I got appendicitis and had an appendectomy. Since the appendectomy, my UC has been much better -- I've had only 1 mild flare in the 3.5 years since. Is it coincidence? I'm still on 6mp and Colazal.
A: It may not be a coincidence that you have felt better but it’s difficult to say for certain. To date, the studies on appendectomy and the course of ulcerative colitis have been conflicting. While some studies have shown an improvement in UC, others have not. Currently, there is a large study out of the UK looking at this very issue. We should have some preliminary results within the next 1-2 years so keep a lookout for this.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2016
Q: Would any of the experts recommend a Paleo diet, probiotics (if so what brand or specifics to look for), or the use concentrated cherry juice for ulcerative colitis flares?
A: This is a very common question. Currently, there is no data to suggest that the Paleo diet or concentrated juices are effective for ulcerative colitis flares. As far as probiotics, not all of them are considered the same. In mildly active ulcerative colitis, 2 specific probiotics may be useful. One probiotic, E. coli Nissle (aka Mutaflor, Ardeypharm) may be effective in putting you in and keeping you in remission for up to one year. The other probiotic called VSL#3, a combination of 8 probiotics, is effective in putting you in remission and possibly keeping you in remission for up to 6 months.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have been diagnosed with microscopic colitis. My symptoms are weight loss from 128 to 108 pounds; gas and bloating; mild diarrhea. Could there be particular nutrients that I am not absorbing that explain the weight loss? Are there particular foods I should eat more of in order to gain weight? I have been following the Specific Carbohydrate Diet for two months and believe it helps reduce gas and bloating but I have not been able to regain lost weight.
A: That’s interesting. Weight loss is uncommon in microscopic colitis. There may be several reasons for the weight loss. If the weight loss has occurred since you started the Specific Carb Diet (SCD), it may be due to the food restrictions from the SCD itself. In addition, it may be a good idea to get tested for celiac disease, which is more common in microscopic colitis, and pancreas problems. Both these disease processes are more likely to cause weight loss.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: My Iron levels are low and my GI recommended an iron supplement. Can an iron supplement cause flares or worsen a current flare?
A: This is a controversial topic. There are studies that show that iron can worsen inflammation and those that do not. I tend to avoid oral iron in my patients with more severe disease or who are having flares but I do use it in those patients who need iron and have more mild disease.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Does IBS cause IBD? Can patients with IBD have IBS concurrently?
A: IBS and IBD are completely different processes with different causes and complications. A patient can definitely have both processes and sometimes it can be difficult to differentiate between the two when symptoms arise.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: How often should a patient have scopes after Pancolitis?
A: It depends on how long a patient has had pan colitis. If it's been 8-10 years, then generally the recommendation is 1-3 years depending on other risk factors (i.e., family history of colon cancer).
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What type of diet do you recommend for people suffering Crohn’s and colitis? Is there anything particularly harmful that worsens symptoms or the disease?
A: This is a very popular question. There is increasing interest in this topic and more and more information is coming out. There is some preliminary studies showing that dairy products, red meat, and coconut oil may worse IBD. When a patient is undergoing a flare, I do suggest going on a low fiber diet. Because of the individualized nature of IBD, what works for one patient may not work for another when it comes to diet. Check out CCFA's diet and nutrition brochure to learn about the role of diet in IBD. http://www.ccfa.org/assets/pdfs/diet-nutrition-2013- 1.pdf.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2016
Q: I was diagnosed with UC about 4 years ago. I'm currently on Remicade, 6MP, and Asacol. I'm an avid cyclist and over the past year have started to experience bouts of muscle fatigue and severe muscle cramping. This NEVER happened prior to my life w/UC. It's as if my muscles rebel against me without warning, even when I'm in remission and feeling quite well; it's like I unexpectedly get pushed off a cliff. Could this fatigue be due to the UC, the meds, or a combination?
A: It is difficult to know. If you are having diarrhea, you could be having electrolyte abnormalities and could be more prone to dehydration, which can affect cramping. The medications that you are taking seldom cause muscle aches, so I don't think that the meds are causing the issue, unless you recall getting cramps from one of the above meds. Finally, if you had a prolonged flare, you could have some muscle deconditioning and perhaps need to regain your strength and rebuild your muscle.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
May 2016
Q: What foods should NOT BE eaten to avoid flare-ups? Is there a diet for UC that I can live with and reduce or not have flare ups?
A: There has never yet been a diet proven to help avoid flare-ups in adult patients with ulcerative colitis or Crohn’s disease. When in remission (symptom free), many people can eat a regular diet. However, there is not one diet that will suit everyone with ulcerative colitis or Crohn’s disease. I would recommend listening to your body and eliminating any foods you find trigger unwanted symptoms. During a flare, however, I will typically recommend a low dairy, low fiber/residue diet. This diet can help minimize symptoms that accompany a flare of inflammatory bowel disease. There are small studies in children suggesting that the Specific Carbohydrate Diet may be able to help control inflammatory bowel disease in some patients. More trials are being done and this is a potentially exciting new development in the treatment of inflammatory bowel disease. This diet is restrictive, however, so I would recommend that you discuss this further with your gastroenterologist and with registered dietician guidance.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
May 2016
Q: My 13 yr. old son was diagnosed with Crohn's in 3/2016. His dr. tried weaning him off the prednisone 30mg twice and it’s not working {having stomach pains/vomiting}. So this last time the dr gave him 6-MP 50 mg 1 a day,Flagyl , Pentasa & Lansoprazole but he is getting sick with stomach pain and vomiting. He is afraid to eat solid foods. He only eats applesauce, popsicles, chicken noodle soup and one carnation breakfast drink a day. Any suggestions with getting him to eat solid foods?
A: It is important to collaborate with your son’s physician and dietitian to create a feasible, realistic plan to advance solid food into his diet. Importantly, it is essential to work with the physician to make sure that his Crohn’s disease is under control and in remission and address the cause of his stomach pain and vomiting to minimize issues associated with eating. Also, the physician can advise the dietitian, you and your son of any specific foods that should be avoided given his Crohn’s disease characteristics. The presence of strictures or narrowings of the intestine may impact one’s ability to tolerate certain types of solid foods. (Narrowings can be identified by upper endoscopy/colonoscopy or by MRI imaging of regions of small bowel inaccessible by upper endoscopy/colonoscopy). Patients with strictures may be advised to avoid high fiber foods such as nuts, hard raw vegetables and fruits. If lactose intolerance is identified, lactose-free options or lactase supplements with lactose-containing foods may be advised to address associated symptoms. For some patients, certain foods may trigger or worsen symptoms. This varies between individuals. Identification and removal of specific ‘trigger’ foods may help to minimize your son’s fear of eating ‘all’ solids. The dietitian can work with you and your son to help address any nutritional deficiencies identified and maintain a well-balanced diet to make sure he meets his nutritional needs as best as possible given his specific circumstances. This is done by integrating his food preferences with physician recommendations to create a working plan. If the team decides to eliminate any foods, the dietitian can advise how to substitute other foods that will provide the same nutrients. CCFA brochure: ‘Diet, Nutrition, and Inflammatory Bowel disease’ may be a helpful resource. Link: http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
March 2016
Q: I am going to be having my 5th Remicade treatment mid- March. I feel well. Is it ok for IBD patients to exercise? How long after infusion should I wait before exercising?
A: It is safe for patients with IBD to exercise if symptoms are controlled and they are not anemic. It is safe to exercise after receiving Remicade but probably best not to do so on the day of the infusion.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
February 2016
Q: What research is being conducted on intestinal transplants? Is this a viable option for treating IBD?
A: Intestinal transplantation is most often considered in the setting of Crohn’s with multiple resections or those with ischemic bowel injury requiring a significant amount of small bowel be resected. Specifically in IBD, they are considered only in cases where intestinal failure and TPN dependence due to the significant complication rate and risks, as with any organ transplantation. This surgery is not performed as a primary treatment for CD, and is really reserved only for those with short gut syndrome.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
January 2016
Q: I have lymphocytic colitis and would like to know if there is a special diet for the condition?
A: Lymphocytic colitis is a type of microscopic colitis. The inflammation is only visualized under the microscopic and the inflammation has a specific pattern. There are two forms of microscopic colitis, collagenous colitis and lymphocytic colitis. As far we know, there is no specific diet that can treat microscopic colitis, nor a diet that makes the condition worse.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have Crohn's Disease and have read that I should avoid leafy greens, including kale, spinach, salads and bread high in fiber. If I remove these foods from my diet, what are the best alternative sources of fiber?
A: Insoluble found, found in many vegetables and fruit, is not recommended with active Crohn’s disease or in Crohn’s stricturing (areas of narrowing in the intestine) disease. Insoluble fiber may cause increased discomfort (abdominal pain and/or diarrhea) in the setting of active Crohn’s disease and not recommended. In the setting of Crohn’s disease stricturing disease, since insoluble fiber is not completely digested there is a risk of insoluble fiber getting stuck in a stricture and causing blockage. Many fruits and vegetable may be still ingested if cooked. Lists of foods with insoluble fiber are included in the Diet, Nutrition, and Inflammatory Bowel Disease brochure at the CCFA website. Once Crohn’s disease is in remission and there are no strictures, a regular diet may be resumed.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: My medication, Asacol HD, has become so expensive. Do you know of any way to save on this medication? I have Insurance, but will soon be on Medicare.
A: If you have commercial insurance the company that makes Asacol offers discount cards that may help. These are not able to be used however once you have Medicare or Medicaid. In general Lialda and Apriso tend to be cheaper and insurance companies prefer these. They are an even substitution for Asacol as they are all mesalamine products.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: What is the efficiency of Mangosteen (pill or juice) in Crohn's patients? Is there a forum where Crohn's patients rate or comment on their experience with Mangosteen ? What is the risk of allergy since Crohn's disease patients have often food allergies?
A: Mangostene is the latest in food fads claiming to cure just about anything. The truth is that mangostene although a delicious fruit is not any more nutritious than any other less exotic fruit like strawberries, pomegranate, oranges etc. Food allergies are always something to take into consideration whether you have IBD or not so if you are going to try some just proceed with caution if you have multiple food allergies to fresh fruits.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: Is it ok to drink coffee if you have ulcerative colitis?
A: The short answer is yes. Keep in mind that coffee does act to move the bowels for many people. That is, it causes the large intestine (colon) to contract and to move stool along. This effect seems to be caused by ingredients other than caffeine so switching to coffee with lower caffeine content may not change the effect. If you are already symptomatic with cramps and diarrhea, this effect from coffee consumption may increase these symptoms. Therefore, the best way to answer this question is to see how the coffee affects you individually.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My daughter has Crohn’s and is away at college. She thinks that the change in her diet and eating white rice is causing greater discomfort. Many things I read show white rice can be good to eat during flare-up. Is it possible that the rice is causing symptoms and that she should avoid eating rice?
A: There are several different issues. The most important is what does one we mean when they say a “flare up”? Does this mean that one is experiencing gastrointestinal (GI) symptoms or that the disease is progressing and so that there is more inflammation that is leading to the symptoms? Whether one has IBD or not, they may experience any one of the common GI symptoms: abdominal pain, nausea, vomiting, diarrhea or constipation. There are biological, psychological and social factors that can all lead to GI symptoms. We even talk this way in common parlance—“gut wrenching experience”, “butterflies in the stomach”, etc. Certainly changes in diet can affect us and lead to GI symptoms. When one has IBD, it is easy to make the assumption that a change in GI symptoms means a change in the disease or “flare up”. Actually, it is more common that with a change in environment and diet, your daughter is experiencing these symptoms somewhat independently of her Crohn’s. This is especially true if she was in a durable remission before going away to school and continues to adhere with her treatment plan while at school. In addition to diet, there are other factors to consider here as potentially playing a role in her symptoms. How well is she dealing with the change and adapting to leaving home? College is notorious for a change in sleep habits and such changes have been shown to adversely affect our GI tracts and lead to symptoms. There may be dietary factors even beyond rice and her knowing her own body and what is agreeing with her is the best way to figure this out. During times when your daughter is experiencing GI symptoms it may be necessary for your daughter to eliminate rice for a few days and reintroduce it to see if it is truly a problem. Finally, this indeed could be from an increase in her disease activity and if her symptoms persist or advance, it would be wise for her to contact her IBD team to make a plan on how to evaluate for this and treat accordingly
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
October 2015
Q: I am taking humira but my insurance will stop in Oct what can I do?
A: Talk with your doctor! It will also be helpful to talk with your contact at the drug company. Some people are connected with a Humira Nurse that assists them. There are programs available through the drug company to help people with low cost or no cost medications based on need. There may also be other programs in your area that your care provider is aware of to help during this time.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have been having unbearable right side pain the past few months. My doctor did an MRE and said there was scar tissue in the Ileum. I also had another colonoscopy and then the next day was my remicade infusion. For 10 days since then I have been running a temp between 99 & 101, a severe headache & side pain. They did a ct scan and ruled ruptures and infection. Are these typical symptoms following a colonoscopy? What is the treatment?
A: These are not common symptoms after a colonoscopy. Because you are on Remicade, I would recommend being evaluated for sources of infection if you are having a fever. The treatment would become more clear once your care provider finds the source for the problem.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
September 2015
Q: What are good ways to handle the mental aspects of the disease? How to reduce worry, which cause flares for me?
A: The first way to handle anxiety and worry about IBD is to get educated about your disease. Knowledge is power. A good source of education is the CCFA which has a number of books concerning medications and natural history of IBD. Dr. Sunanda Kane has published an excellent book thru the AGA on “Living with IBD.” This is available at www.amazon.com . Finally, recent articles have emphasized that stress and anxiety as well as sleep deprivation can cause flare of IBD. Recently we have started referring patients to psychologists for Cognitive Behavior Training (CBT) and instruction with coping skills and stress management. Most important is having a doctor whom you trust and who you can share decision making with.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2015
Q: Sometimes I have stomach aches when I eat gluten and sometimes I don't. So, is it a good idea to go gluten free if you have Crohn's disease?
A: This is a very good question. While there are people in the general population that might have a gluten intolerance and not a true gluten-sensitive enteropathy which represents a condition called Celiac disease and can lead to small bowel inflammation and malabsorption. Gluten is a protein that is found in wheat, barley and rye. People have reported increased symptoms with gluten intake including gas/bloating/diarrhea/nausea, but that doesn’t mean their Crohn’s disease activity is affected by gluten intake. There are no studies to date that show that a low gluten/gluten-free diet leads to improvement in inflammation or healing of Crohn’s disease, even if it does make some patients feel better. Celiac disease (gluten-sensitive enteropathy) is more common in patients with Crohn’s disease than the general population and can be evaluated by your provider if appropriate. The CCFA has some information about diet and nutrition on their website that you can find here: http://www.ccfa.org/resources/diet-and-nutrition.html
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: It's been five weeks since my resection and I'm still so very tired. Is this normal? Also I am depressed and it seems to be getting worse every day. Finding this out at age 59 that I have Crohn’s is just so hard to accept.
A: a. You should be feeling more energy by this time after a resection, especially if the resection removed active Crohn’s disease. You should let your GI doctor know how your are doing, perhaps you should be checked for anemia. Did you taper off steroids recently (such as prednisone)?. Sometimes the body becomes dependent on steroids. If you are not having abdominal pain, fevers or vomiting it is unlikely there is a complication from the surgery. You should also see your primary care doctor about the depression. Major surgery and a new diagnosis of Crohn’s must be quite overwhelming. That may be a major factor here. Your primary doctor can also check for other problems such as thyroid disorders. Bottom line – connect with your GI doctor and primary doctor about your symptoms.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I have ulcerative colitis. Is it safe to take food grade diatomaceous earth? And if it is safe, can it be ingested it when actively bleeding?
A: There is no substantiated benefit from ingesting diatomaceous earth. Silica can be toxic. Its use is not recommended.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I have traveled to 15 countries in the last five years and the only two times I have had a flare up is when I've visited countries where I have to drink bottled water. Could changing your diet for ten days to an acid diet cause a flare up? I normally drink tap water at home which is ph7, most bottle waters are acid.
A: The stomach is normally very acidic (less than pH 3.5) so subtle differences in drinking water pH should be of no consequence.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2015
Q: My 15 year old daughter is about to start 6mp for Crohn’s disease. I want to know if it is ok for her to take it at night before bed. This is when her stomach is most empty and I understand it is supposed to be given on an empty stomach. Are there side effects that I might miss if she is sleeping after she takes it?
A: 6MP does not need to be taking on an empty stomach but doing so may reduce the risk of nausea and vomiting – however, this side effect is very uncommon in the doses used for Crohn’s disease. It can be taken any time during the day. Many patients take it in the morning because they are less likely to forget to take it but if your daughter has a routine to take medications at bedtime it is also acceptable to take it then. It is unlikely that there would be side effects that would be missed while sleeping.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
June 2015
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My rheumatologist's office nutritionist has put me on a 3 week course of rifaximin to treat SIBO (small intestine bacterial overgrowth) which she says is the source of my Crohn's and other autoimmune symptoms. She has also advised me to follow the strictest version of the FODMAPS diet with no grains for 3 months 'to kill off the bacteria'. I am worried about completely eliminating all my beneficial microflora by staying on this diet for so long. Any advice or experience with prolonged FODMAPS?
A: There is a lack of scientific evidence suggesting SIBO is the cause or source of all autoimmune symptoms. There is actually debate within the medical community as to whether SIBO is a problem. It’s a tough question, but since rifaximin is safe, most doctors will try it. Low FODMAPs diets don’t kill off bacteria. However, low FODMAPs diets may help some patients with symptoms of bloating, diarrhea, and cramping. You will likely not harm yourself with a prolonged low FODMAP diet, but it is not recommended being on this diet for a long time if it does not help you.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
May 2015
Q: What maintenance drugs are recommended after small bowel resection surgery for Crohn's disease?
A: It is well established that Crohn’s disease recurs after the surgery in majority of the patients. There are certain factors that increase your risk of recurrence such as young age, female gender, smoking, long segment resection and history of prior resections. In patients with higher risk of recurrence, it is suggested to start the medical therapy soon after surgery. In clinical studies, anti- TNF therapy has been found to significantly decrease the risk of disease recurrence. Other immunosuppressive drugs such as azathioprine have also been found to be useful to prevent recurrence. In lower risk patients, physicians may elect to monitor them closely and start therapy at the earliest signs or symptoms of recurrence. This strategy may warrant close monitoring with repeat blood and stool tests and colonoscopy. Most of the clinical studies have found anti tnf therapy and immunomodulators to be effective drugs to prevent recurrence.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I’m 36 years old. I have Crohn’s Disease, no insurance and no job due to the severity of the disease. Where can I get help for treatment?
A: The Health Insurance Marketplace is a new way to find quality health coverage in one place. Within the Marketplace you can learn about your health insurance options, compare insurance plans and submit an application. Many people qualify for financial help from the government to help cover the cost of insurance. For more information about the Marketplace or to apply for coverage, visit: www.healthcare.gov . The deadline to sign up is Feb 15th. For free health care you can get services at community health centers. To find centers in your area visit: http://findahealthcenter.hrsa.gov/. Finally is you are unable to work because of your disease, you may be able to apply for social security disability benefits. Contact the Social Security Administration at www.ssa.gov .
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have Short Bowel Syndrome, malnourished and need eg. form of iron. Which is the best form of iron to use with no ileal-cecal valve?
A: Iron is absorbed in the duodenum (1st part of the small intestines) and should not be greatly affected with short bowel syndrome unless Crohn’s or another factor is impacting absorption in the duodenum or there is a chronic source of blood loss. I would consult with your physician to determine if and how significant is the iron deficiency. There are several formulations of oral iron (ferrous sulfate, ferrous gluconate, and ferrous fumurate) and if oral treatment is not tolerated intravenous iron can also be prescribed. As for other nutrients that may be low in short gut syndrome due to absence of the end portion of the small intestine and or diarrhea include vitamin deficiencies (B12, A, D, E, K) and mineral deficiencies such as zinc, magnesium and calcium. Please see the Short Gut Syndrome and Crohn’s disease brochure nutrition section for further recommendations.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Is it normal for all your joints to hurt in cold weather? We just moved to WA State from LA. I have Crohn's and I have never hurt so badly.
A: In a subset of patients with rheumatoid arthritis, weather seems to impact on joint symptoms. It’s not clear in the medical literature as to which aspect of weather (barometric pressure, temperature, humidity, solar exposure) is the major driver in the subset of patients that are affected by weather. Although there is a lack of medical studies evaluating if weather plays a part in joint symptoms in inflammatory bowel disease patients, it is certainly possible that weather may be playing a part in your symptoms. I would also recommend seeing your physician to make sure there is not another reason such increased Crohn’s activity or a medication side effect.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Have there been any studies on the use of Aloe Vera in the treatment of Crohn's Disease? Also, if there is any proof as to the benefits of Aloe Vera? What would be the normal dosage?
A: In test tubes, aloe vera gel may also have anti-inflammatory and anti-oxidant effects. Aloe vera in animal studies may reduce inflammation in the ear and synovial (joing) fluid. There have been no studies published assessing aloe vera treatment for Crohn’s. There was a small study of 44 subjects published by Langmead et al (APT, 2004) assessing the effectiveness for treating mild to moderate ulcerative colitis. Forty-six percent of patients receiving aloe vera gel 100mL by mouth twice a day responded compared to 14% receiving placebo after 4 weeks, but remission and endoscopic improvement was not found to significantly different. Larger studies are needed in UC and studies are needed in Crohn’s before it can be recommended as a treatment.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2014
Q: I have Crohn’s and cannot eat grain and vegetables. I am eating mostly carbs and I am gaining too much weight. What can I do to control the weight but still be able to eat?
A: It is important to eat a balanced diet and avoid too many refined sugars and carbohydrates. As raw fruits and vegetables are often poorly tolerated, it may be helpful to include plenty of well cooked fruits and vegetables. Consider juicing fruits and vegetables – this usually results in less fiber content than raw fruits and vegetables and may help avoid high caloric intake. Consider including high protein foods that have fewer calories than refined carbohydrates. If there is still difficulty, consider consulting with a nutritionist.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2014
Q: I’ve had three ballon dilations in the last 14 months and they usually last 6 months or so. I’ve been on Humira for almost two years with no side effects. I have a stricture that really makes me constipated. My gastro said my intestines are free and clear of any inflammation but it's just the stricture. He said there are no other options except a colostomy? I find that hard to believe. Is he correct? What about anoplasty flap?
A: Crohn’s disease can cause structuring anywhere along the intestinal tract including where the rectum meets the muscles that provide control over bowel motions. A stricture at this level is generally treated with dilatation sometimes in combination with steroid injections into the site. The patient is then encouraged to use products that promote a well-formed stool that acts to dilate the area as it passes through. In rare instances, the stricture can be managed by excising a short area of narrowing and reconnecting the two ends of bowel usually in combination with a temporary ileostomy or colostomy. An anoplasty flap is generally not appropriate because the stricture is not close enough to the skin surrounding the anus to allow such an operation to be successfully performed.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: I had surgery to remove my colon in 2000. Should I be supplementing my diet with vitamins? if so, which ones?
A: The food we ingest passes from the stomach into the small intestine (duodenum, jejunum, and ileum) before entering the large intestine (colon and rectum). The small intestine is responsible for absorbing most minerals and vitamins from the food we eat, and this process transfers these important substances from the bowel lumen to the bowel wall where the minerals and vitamins enter a network of blood vessels draining into the liver. The principal role of the large intestine is to remove water and electrolytes from liquid waste to hydrate the body and produce solid waste. The large intestine also absorbs vitamins that are created by the colonic bacteria, such as vitamin K, vitamin B1 (thiamine), vitamin B2 (riboflavin), and vitamin B12 (cobalamin). However, the bulk of these vitamins are absorbed in the small intestine through normal processes.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
May 2014
Q: My 16 year old son was recently diagnosed with Crohn's disease. He was also diagnosed with Eosinophilic Esophagitis. He has had multiple life threatening food allergies and asthma since birth. Is there any relationship between food allergies and Crohn's disease? Could an offending foods cause inflammation and Crohn's like symptoms in the GI tract?
A: There have been several studies evaluating if a specific diet causes Crohn’s disease and there has not been a clear link found so far. Crohn’s disease is not considered an allergic disease. Celiac disease is caused by gluten (found in wheat and barley) may cause symptoms that are similar to Crohn’s.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: My nine year old granddaughter has Crohn’s disease. She is doing well and feels fine. Since she is doing well, is there a need for her to attend various CCFA programs and events?
A: It is wonderful to hear your granddaughter is doing well. She would be a wonderful role model for other patients that are not in remission. The purpose of CCFA events is various, including education, networking and fundraising. Many of the events are meant to educate patients and caregivers about Crohn’s disease and ulcerative colitis and how it is cared for by medical providers. Some of the events are social, to provide social support and networking. Your granddaughter and caregivers can select which events is the right fit.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I am 59 and was diagnosed with Crohn's in April of 2013 after an intestinal blockage in the ilium. I am currently on 100mg of azathioprine. Is there anything I can do to unclog the intestine as soon as the symptoms start? I'm not currently on a special diet and only take a calcium supplement.
A: You may want to discuss diet with your doctor and possibly also a dietician. It may be helpful to avoid foods that are difficult to digest, particularly fresh fruit and vegetable skins – as well as excess fiber. These types of foods are more likely to get stuck in an intestinal narrowing and cause a blockage. If you feel like you are having early symptoms of a blockage, it may help to take only liquids, while you are waiting on further advice from your doctor. Depending on the situation and the level of Crohn’s inflammation, adding another medication when symptoms of obstruction start may be helpful. This is just another reason to let you doctor know when you are beginning to have symptoms that feel like a bowel obstruction. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html http://www.ccfa.org/resources/diet-and-nutrition.html
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
January 2014
Q: I was diagnosed with UC 5 years ago and after a year of trying out different meds my dr. found a combination that worked for me. I started off with 60 mg of prednisone and have since then tapered down to 5 mg. I have been on that dosage for the last few years. Is it safe for to be on steroids for so long?
A: While 5mg is a low dose of prednisone, there is no ‘lower limit’ for what is considered safe. So while it is better than being on 60mg/day, it can still be associated with risk of side effects at a lower frequency. If there are medical alternatives available, then continued attempts should be made to come off even the 5mg/day of steroids, particularly in younger individuals where several decades more of exposure may be expected. In contrast, if someone is older or has significant co-morbidity that precludes further medical treatment, then it is reasonable to stay on long-term low dose steroids recognizing that the risk of side effects remain significant in that situation. Consideration should also be given for potential surgical treatment as surgery for ulcerative colitis is curative and would help coming off the steroids.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I have Crohn’s and have anemia and I get monthly shots of B12. I have trouble breathing with stair climbing or bending over and sometimes just a brief walk to another room. I rest as much as I can. How can I gain my energy back?
A: There is increasing recognition of fatigue and low energy as an ‘extraintestinal’ manifestation in patients with Crohn’s disease. Sometimes there is a nutritional cause for this such as low B12 or low iron and anemia. If you are still anemic and are deficient in iron, that could be a cause for your symptoms. Sometimes a gradual exercise program is able to help with improving exercise tolerance and reduce fatigue. Of course, it is important to ensure that your Crohn’s is under remission and that there isn’t an alternate explanation for your trouble breathing including problems with the heart or lungs.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: Is there any new research on diet and IBD?
A: In the study “Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease”, completed by Cohen et al. (2012) as part of our CCFA Partners research initiative, yogurt, rice, and bananas were more frequently reported to improve symptoms whereas non-leafy vegetables, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high-fiber foods, corn, fatty foods, seeds, coffee, and beans were more frequently reported to worsen symptoms. You can find out more information about these results in the abstract or manuscript of this study published here: https://cgibd.med.unc.edu/ccfapartners/results.php .
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
June 2013
Q: Can people with Crohn’s safely donate blood. I'm 16 and in my state old enough to donate, however my parents are concerned just because of my Crohn’s I shouldn't donate . My mom also said because I take 6mp they won't let me donate? I'm not having a flare and meet all the criteria. Is there any reason that I can't donate if my blood counts are currently fine?
A: Crohn’s disease will not disqualify you from donating blood. On the other hand, Crohn’s that is not well controlled and having complications related to Crohn’s disease such as anemia are reasons you may not be able to donate. Treatment with 6-mercaptopurine will not disqualify you. More information is available at the American Red Cross website, www.redcrossblood.org.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: My son is an athletic 16 year old diagnosed this year with CD. He pushes himself very hard physically but is unable to build muscle despite eating mostly protein, fruit and vegetables. He is extremely fatigued. He is on Pentasa, Flagyl and Methotrexate (oral) - 3 weeks. Will he stop feeling so tired? Will he ever get back to normal again? Can he continue to pursue athletics now that he has Crohn’s or is that hurting his progress toward remission?
A: The symptom of fatigue may be a combination of factors related to Crohn’s disease: active disease which will cause fatigue and even weight loss, anemia from blood loss related to the disease, and malnutrition due to inability to absorb nutrients adequately. So all these factors need to be taken into consideration and addressed to help him improve. Methotrexate’s clinical effect may take up to 12 weeks so it is too early to know if he is a responder to medical therapy. If his Crohn’s is very active, he may have physical limitations and he may be placing himself at risk for complications and increased symptoms with moderate-high intensity exercise. Once he is in remission or has mild symptoms he may resume his regular activity with guidance of his physician. In fact, exercise is encouraged to maintain muscle mass and encourage well being when inflammatory bowel disease is not very active.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2013
Q: Do people ever gain weight after colonectomy surgery?
A: Patients’ weights can respond differently to having their colons removed. For example, patients who have taken steroids for an extended period of time often experience weight loss after their colon surgery because they are able to successfully discontinue their steroid therapy. Similarly, patients kept inactive secondary to their disease may lose weight after the affected bowel is removed because they can resume more vigorous activities after recovering from surgery. On the other hand, patients whose diet or caloric intake was limited by their disease, will often gain weight after their colectomy because they can return to a more healthy diet that enables their bodies to rebuild.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
February 2013
Q: I have been going through some rough flares recently and am so tired all the time. I used to go to work with initiative to accomplish goals and be successful in what I do. Now I just do not care. I know that I am blessed to have a job, but struggling with this disease has taken away my drive for work, exercising, and even spending time with my family. Do you have any advice on how to get the drive back?
A: Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing. When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: My wife just up and left me 4 weeks ago and my stress level is at an all time high. I feel like I'm having a breakdown and my stomach has been in constant turmoil. I tried now for 4 weeks to tough it out and let myself heal emotionally the natural way, but it just isn't working. Any advice would be greatly appreciated on how to deal with the stress and managing my Crohn’s disease.
A: Life stress, especially the loss of a relationship, has been linked with worsening gastrointestinal symptoms in patients with IBD. This is thought to be due to the strong connection between the gut and brain, especially the areas of the brain that regulate our emotions. Though I’m sorry to hear about your recent break-up, there are several things you can do to decrease stress and help yourself feel better during this challenging time. First, it is very important to get back to activities that are enjoyable for you, even if it is difficult to force yourself to do them. When we relax or find pleasant diversions, it gives our brains a rest from processing the stress. Taking 10 minutes a day to focus on relaxation can be effective in decreasing stress. One breathing exercise involves deep slow breathing…counting to 4 while breathing in through your mouth, holding it for 4 counts, and letting the breath out through your mouth over 8 counts for 10 breath cycles can decrease stress. Second, finding the company of trusted friends is especially important when dealing with stress, as positive social interactions have been shown to decrease the stress response that affects the gut. Finally, if stress is chronic or extreme, it can through a switch in the brain causing an emotional reaction to become a more clinically significant depression or anxiety disorder which can benefit from the services of a professional therapist or counselor. Letting your gastroenterologist know about your life stress is a good place to begin.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it. Being told you have what is a lifelong disease that will never be cured, and will likely only get worse and may lead to surgical removal of parts of your intestines is really like being continually smacked in the face. How exactly do you accept that, I mean truly accept it? Where do I start?
A: The first place to start is to give yourself permission to have a reaction and to know that it is normal to have a range of responses when diagnosed with Crohn’s disease, something unexpected and life-altering. It is natural to go through some type of grieving process about the loss of health, similar to how people react to the loss of a loved one. The responses involved vary among individuals. Some people get sad, others get angry but there is no right or wrong way to grieve. What is important is that you recognize your feelings and remind yourself about other difficult challenges you have adjusted to in the past. Although the passage of time is the best healer, there are active steps that have helped others with Crohn’s disease accept their diagnosis. Talking about it with others is a good first step whether it is good friends or family or through a CCFA support group or activity. Some patients find it helpful to journal about their experiences as a way to work through the emotions. Others find it useful to focus on other aspects of their lives that they can control. For example, thinking about three positive things in your life or three small tasks or steps you will achieve that day. Finally, others have found that “finding the silver lining” about a situation (i.e., something positive or something that could be even worse by comparison) helps them feel better. In fact, many studies show that optimistic thinking can positively influence how well your body copes with the disease and how well your immune system responds to the medications or your gastrointestinal tract heals from surgery.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
December 2012
Q: I have Crohn's and am almost always extremely dehydrated - eyes so dry I can't blink, finger tips puckery, mouth dry no matter how much water I drink. Is this from Crohn's? What should I do?
A: Dehydration can be caused by a number of disorders and can also be associated with electrolyte imbalances. We lose water through many routes including moisture in our breath as well as water in our stool, sweat, and urine. It is important to maintain an appropriate intake of fluids such that you urinate at least 4-6 times each day. You can also look at the color of your urine. If your urine is a light yellow to clear, this can indicate you are adequately hydrated. Some patients with Crohn’s disease suffer from watery diarrhea that diminishes their water and electrolytes. These persons should work with their physicians to manage the diarrhea, but they should also replenish their losses by drinking sports drinks that contain both water and vital electrolytes such as sodium and potassium.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
September 2012
Q: I'm a young adult that has been living with UC for 15 years. School is starting soon-and I'll be running 14+ hour days during the week. Do you have suggestions for food plans/diets? I've been trying to do a low-residue diet.
A: Stick with the diet that works for you. If you generally do a low residue diet then that should probably be continued. Eat has healthy as possible and don’t forget time for rest. Life does not necessarily become less busy when you are done with school. Don’t forget to take a multivitamin, calcium and vitamin D. Take a look at some of the diet tips at CCFA.org.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2012
Q: Is there a risk in having plastic surgery if you have been on immune suppressants or biologics? I have not had infliximab in 4 months, I stopped taking azathioprine three months ago, and I also took steroids but have tapered off. Is it safe to have any surgery after all this medication?
A: The risk of anti-TNF therapies (such as infliximab, adalimumab and certolizumab), 6-mercaptopurine or its prodrug-azathioprine, and corticosteroids have been assessed for postoperative complications in several studies. The risk of postoperative complications with anti-TNF therapy is not clearly increased based on these studies. The same is true for 6-mercaptopurine/azathioprine. Whereas for corticosteroids, if at the time of surgery it is greater than 20mg a day it may increase risk for complications. It takes at least 4 half-lives for minimal drug concentrations to remain in the blood stream. Based on a half-life of 7-9 days with infliximab, infliximab exposure 4 months ago should not affect surgery. The half life of azathioprine’s active metabolite (6TGN) is between 3-13 days, so stopping azathioprine 3 months ago should not have an effect. The half of prednisone is 3-4 hours.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I've read that people with ulcerative colitis should be on a gluten free diet. Is this true?
A: Gluten is not a known stimulant of ulcerative colitis or Crohn’s disease. Some individuals have gluten intolerance, which causes gastrointestinal symptoms such as bloating and abdominal discomfort. So if a patient also has ulcerative colitis the gluten intolerance may add to symptoms already present.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2012
Q: I completed my first half-marathon in December with Team Challenge and would really like to do another. What is recommended in terms of nutrition supplements during a long run for someone with Crohn's? It seems that even with the gels and chews available, I'm just not able to keep my energy up.
A: For long distance running with Crohn’s, the most important part is to be sure you are keeping up with your hydration, both before race day and on race day. Every individual’s needs are different and dependent on their fluid losses (which includes most importantly sweat and stools (diarrhea)). An average recommendation (for people without bowel disease) is to drink 3-6oz every 15-20 minutes during the run (about 1 cup of water every other mile). For a starting point, try to estimate your sweat rate (weigh before and after a good hour run and then convert this to ounces/hour of loss). You will need to be replacing those losses plus adding more for any diarrhea and more if it is hotter. In regards to carb intake (gels and chews), be sure you take something pre-race, and then at least 45 minutes into the run, to help prevent losing steam early on. You will have to adjust this to your own body and may need to take more of these then other people given your Crohn’s. Try out various formulations to see what works best for you. Make a hydration and nutrition plan for race day beforehand and talk it over with your doctor to further tailor it to the specifics of your disease.
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Experts 2010-2011, MD, etc.
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March 2012
Q: I am running my first half marathon in less than 2 weeks. I’ve been training since November, but I’m having lots of issues and some days it’s just impossible to run - not because of the pain, but because it’s just not in me to run that day. I know that most people are supposed to carb load before a race, but what should someone with Crohn’s do to prepare diet wise?
A: First things first, in regards to poor energy, be sure to talk with your doctor to ensure that your Crohn’s disease is adequately treated. Next, nutrition during training for long distance running is important both for people with and without Crohn’s disease. You should be eating a healthy, balanced diet in addition to being sure you are staying adequately hydrated. Carbs are important in all your meals to provide the energy stores you need for running and protein is especially important post-race to help repair your body. On race days, you can try to eat something light (like a banana or a bagel or something you know you digest well) before the run. It is also important with long runs to consume snacks during the run. There are a wide variety of energy supplements (carbs) that come as gels, chews, or bars that you can take during the run. You want to be sure to consume these early on in the run, and then periodically throughout (make sure you don’t wait too long and lose steam). Many recommend these every 30-45 minutes during the run. You will have to try various products and see what works best for you. And again, being sure you are adequately hydrated is a very important part of this as well.
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Experts 2010-2011, MD, etc.
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February 2012
Q: I was 19 when I was first diagnosed with Crohn’s. I have had 2 resections. As time went on I was diagnosed with IBS and now I also have diverticulitis. How do I deal with diet? Crohn’s is low fiber and IBS and Diverticulitis is high fiber.
A: There is a rather obvious link between diet and gastrointestinal illnesses. Unfortunately, it is not a very well understood link at this point in time. What’s certain is that the “wrong” diet will not result in any prolonged negative effects. That being the case, you should feel free to experiment with low or high fiber diets, with the assistance of an expert, until you find the one that’s right for you. No matter the choice, you won’t harm your Crohn’s, IBS, or diverticulosis.
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Experts 2010-2011, MD, etc.
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February 2012
Q: My son is 14 yrs old and had his colon removed a couple weeks ago. What can I feed him to put some meat on his bones? He's 5ft 6in and only weighs 105lbs. The doctors tell him he needs to really concentrate on keeping hydrated so he drinks lots of water and Gatorade, but those things fill him up so he isn't hungry.
A: A diet high in protein calories is the best thing for him at this time. It would likely be advisable for him to meet with a nutritionist to get a detailed description of how to accomplish this, but all calories are good calories and high protein calories are best.
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Experts 2010-2011, MD, etc.
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December 2011
Q: I have not had a flare up or problem for over 6 years now and haven't been on any medication for 14 months. Can I donate plasma?
A: Yes, you should be eligible to donate plasma.
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Experts 2010-2011, MD, etc.
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December 2011
Q: I have painful gas daily. Can I take simethicone or beano for this?
A: Beano (the enzyme that helps break down the sugar found in many types of beans) literally only works on breaking down arabinose, which is the sugar in beans. If you do not eat beans, then Beano will not help you. Simethicone breaks up gas bubbles that are in the stomach, but if the gas has already reached your intestine, then simethicone will not help either. Simethicone however is certainly safe to take.
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Experts 2010-2011, MD, etc.
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December 2011
Q: I feel like my Crohn's is always worse in the fall and winter, but it sounded crazy to think that the seasons impact the disease. Then I read that there is a link between vitamin D deficiency and Crohn's Disease. Is there any validity to this claim?
A: There is very good literature to suggest that some patients note a strong correlation to the season so your observation is not crazy. We think that the lack of vitamin D in Crohn’s patients can contribute to ongoing inflammation and that treatment with vitamin D supplements to restore normal levels can help disease symptoms.
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Experts 2010-2011, MD, etc.
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November 2011
Q: My son underwent a successful total colectomy 10 yrs ago for the treatment of colitis. He has become obese and unable to eat many of the typically recommended foods (high fiber veggies, raw fruit). What recommendations do you have for a low fiber diet geared to weight loss?
A: For anyone that needs to lose weight the recipe is always the same. Look at total calories in the diet and especially the intake of sugar and fat. I understand the difficulty with consuming raw vegetables and fruits; however, cooking the vegetables makes them more tolerable and just as beneficial in terms of nutrients and weight loss success. Prepare vegetable soups and purees and do not add a lot of fat. When trying to lose weight the amount of fruit in the diet should be limited to 2 per day. Try cooking the fruit, like baked apple as it becomes more digestible that way. Your son can be successful with weight loss if he is cautious with the total calories he consumes and takes some time to be active. Keep vegetables and fruits cooked and eliminate sugar from the diet.
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November 2011
Q: Has there been any links shown between improved condition and a cessation of wheat in the diet?
A: There have been very few studies that have shown people with IBD do well on a wheat free diet. However, those people who have been tested for wheat sensitivity or intolerance and have a proven inability to digest it can benefit from this restriction. This situation is not common and most patients with IBD tolerate wheat products just fine. Be careful with eliminating excessive amounts of food from the diet. Remember that patients with IBD need a balance of nutrients and limiting wheat can cause significant reductions in total calories, which in turn can lead to caloric deprivation. Truly evaluate the need for this kind of restriction before imposing it upon yourself. Going to a reputable allergy or immunology center would be recommended before major dietary changes like this are taken on.
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November 2011
Q: I have had ulcerative colitis for 31 years and had my large intestine removed 3 years ago. I am severely lactose and dairy intolerant and my Vitamin D count is very low. My doctor gave me a script for Vitamin D but it made me so sick I stopped it. Can it be because I have no large intestine to absorb this vitamin? What do you suggest? I can only eat certain foods, no veggies or fruits.
A: Vitamin D3 is a critical micronutrient that assists in the absorption of calcium and allows for many other bodily functions that are imperative for maintaining health. Recently vitamin D3 has been implicated in reducing the risk of certain cancers and reducing inflammation in the body. Remaining deficient in this nutrient is not beneficial and can lead to other disease states. It is very important that you bring your body back to balance and make sure all vitamins are at recommended levels. As for getting enough vitamin D3 I recommend the following: 1) Consume more oily fish like salmon and tuna; 2) Try drinking more fortified orange juice and almond or soy milk (these also have a lot of calcium); 3) Have more eggs as the egg yolks have a good amount of this micronutrient; 4) Spend 15 minutes in the sun each day; 5) Try taking 1000 IU of vitamin D3 chewable on a daily basis, sometimes the prescription dose is 10,000 IU once a week and this can make you feel sick.
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September 2011
Q: I have colitis and just found out this year. I also compete in cycling and typically train and race 10-12 hrs a week. Is there any effect of this on the colitis? Could the physical stress cause a flare? Are there any recommendations for athletes with colitis for diet and training?
A: There is no evidence to suggest that exercise worsens inflammatory bowel disease. Exercise is important for bone health and for mental health. There are professional athletes with IBD. Some IBD patients have decreased exercise tolerance, but the available studies suggest this is mainly related to complications of IBD, such as anemia and poor bone health. There are also practical issues to consider. Patients with ostomies should refrain from contact sports, patients with active disease—particularly of the rectum—may need to be close to a bathroom, and some may need to be prepared for the occasional accident. The message, however, is that exercise should be done to the extent it is tolerated, it should be encouraged, and it is more beneficial than harmful in the majority of patients. With respect to diet, a healthy one is the rule. For patients who have trouble keeping weight on, they should understand that physical activity burns calories, and so they will need more calories. The more strenuous the exercise the more (healthy) calories they will need. For most patients, especially those with inactive disease, the dietary recommendations for athletes with IBD are usually the same as athletes who don’t have IBD.
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September 2011
Q: I am about to start training for the CCFA half marathon. I have severe CD with an ileostomy. My ostomy is very active and there is a short duration where there is no output. I already have a problem low sodium and low potassium. I often end up in urgent care needing 3-4 liters lactated ringers. How will I avoid exacerbating these problems while training and during a day of half marathon?
A: Patients with ileostomies can have significant water losses, and importantly, sodium and potassium losses. For an athlete with an ostomy, the water, sodium and potassium losses from perspiration and increase respirations may also be substantial. Ostomy, perspiration (sweat), and respiratory losses must be accounted for when considering fluid and electrolyte replacements. If a patient is having difficulty maintaining hydration at rest, this should be addressed with their physician prior to introducing an intensive training program. It is important to realize that most sports drinks do not meet the fluid and electrolyte needs of an athlete with an ostomy. Sports drinks may have too much sugar and, more importantly, not enough sodium and potassium. A patient with an ostomy may need pediatric hydration solutions (which are much higher in sodium and potassium) to maintain normal hydration.
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August 2011
Q: How effective are probiotics in reducing inflammation in Crohn's disease or ulcerative colitis?
A: Many studies have tested the effectiveness of probiotics in reducing inflammation in IBD. Results have been mixed for Crohn’s disease, with some studies showing a benefit, many showing no effect, and some showing that symptoms get worse. On the other hand, several recent studies have shown that probiotics may reduce inflammation in patients with Ulcerative Colitis. The choice of a specific probiotic should be discussed with your doctor, as they vary widely in make-up and stability in the GI tract.
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July 2011
Q: Should you only make dietary changes during a flare—or is it also helpful to watch your diet at all times? For example is it wise to avoid high fiber foods all/most of the time? In other words can watching your diet help to prevent flares and/or the frequency of them?
A: Dietary recommendations must be individualized to reflect disease type, area of intestine involved, and the severity of the disease. While it is important to strive for a well-balanced and healthy diet all the time, sometimes flares of disease will cause more dramatic dietary changes to reduce symptoms. In your example, avoiding high-fiber foods is recommended in patients with IBD that have abdominal pain, cramping, or diarrhea after eating. However, some patients in remission and on maintenance therapy tolerate high-fiber foods without difficulty, and this is largely on a trial-and-error basis. Watching your diet may help you to prevent symptomatic flares if you have Crohn’s disease associated with narrowing of the intestine, as intestinal cramps or pain in this setting may be more reflective of the intestinal narrowing more than the disease itself. Keeping a food diary is extremely helpful to assist identifying what foods and beverages you tolerate well, and what foods you should avoid based upon your symptoms. The CCFA has a food diary template available for download at: http://www.ccfacommunity.org/ResourceCenter.aspx
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July 2011
Q: What is the best diet plan post a proctocolectomy or resection surgery?
A: There is no perfect diet plan for all individuals that have had an operation, but common recommendations for eating following proctocolectomy with reconstructive ileoanal pouch reconstruction include: 1) efforts to eat smaller, more frequent meals; 2) avoiding concentrated, sugar-dense liquids like soda, or greasy foods that can increase loose stools; 3) start slowly and increase intake gradually; 4) avoiding late-night meals – this helps to cut down on having to get up in the middle of the night to have a bowel movement; and 5) stay well-hydrated and drink plenty of fluids. Your surgeon and gastroenterologist will work with you to define goals for the consistency and frequency of your bowel movements. The consistency of your bowel movements can be modulated by the use of supplemental fiber, and the frequency can be influenced by anti-diarrheal medicines that slow the intestinal transit time. You will want to discuss with your doctors specific foods such as nuts, seeds, corn, and popcorn if they have given you problems or caused cramps in the past. There is high value in maintaining a food and beverage diary in the first few months following surgery, as it will help you to identify foods that may give you more problems with bowel movements and foods that you can consume without difficulty. The CCFA has a food diary template available for download at: http://www.ccfacommunity.org/ResourceCenter.aspx
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June 2011
Q: I have had Crohn's since 1987 and am in my mid-40s. I currently take adalimumab twice a month and am doing very well on it. I had surgery in 2003 and they removed 65% of my large intestine and 35% of my small. My problem is that about 90% of the time I have a bowel movement (BM) after I eat. It can be embarrassing at times especially if my wife and I are out to eat with friends. Any suggestions on how to reduce this?
A: It is a natural reflex for the bowels to evacuate after eating a meal, to make room for the newly eaten food. However, when you have had surgery, such as you describe, that reflex may be exaggerated. One possibility that may help reduce the need to have a BM after meals, especially if you are planning to go out, would be to take an anti-diarrheal medicine, like Imodium, prior to the meal (be pre-emptive about it, don’t wait until it happens!)
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June 2011
Q: What type of dietary modifications can help in the symptoms of nausea and vomiting?
A: The first question to ask is why you are having nausea and vomiting. It is important to address the cause for these symptoms with your doctor so that, if possible, specific management can be aimed at alleviating the underlying reason for these symptoms (i.e. treating active disease or removing a blockage if it is present). If these symptoms are related to an active flare, eating smaller more frequent meals will often help. Also, avoiding fiber, dairy, spicy foods, and high fat meals during flares can also help. If the symptoms are related more so to a chronic blockage (scar tissue) in the bowels, then eating a low residue diet (especially avoiding diets high in insoluble fiber) and again, eating small frequent meals, may help. Nausea and vomiting could also be related to medications used to treat IBD, so discuss this possibility with your doctor as well.
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June 2011
Q: Is exercising recommended in helping to manage the symptoms of IBD and do I have to take any precautions if I want to exercise?
A: Exercise is an important part of any healthy lifestyle and having IBD doesn’t change that. However, when you have active symptoms, you may not feel up to exercising. On the other hand, when you do feel well, regular exercise is encouraged. In general, the only limitations on exercise are what you impose on yourself. However, be sure to discuss your specific exercise plans with your doctor.
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May 2011
Q: Will maintaining a gluten-free diet help with the symptoms of IBD?
A: A lot of people claim that a gluten-free diet will help with symptoms of IBD. However, most people are not really intolerant of gluten, an entity that is found almost everywhere. In ulcerative colitis, the inflammation is in the colon not the small intestine so the effect of gluten has no direct effect. In Crohn’s disease, some feel that a gluten free diet helps them feel better. Most of this effect is from a healthier diet in general, since gluten free essentially means taking all the “crap” out of your diet and that you are eating healthier, eating foods made at home and not purchased pre-made or in restaurants.
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May 2011
Q: What type of diet or lifestyle modifications will help with increasing energy and dealing with the symptom of fatigue?
A: There are no diets that have been shown to definitively and consistently helped patients with energy. Carbohydrates give your body instant energy, but protein is important for longer term energy requirements. Making sure that a well balanced diet in terms of nutrients is important—if you are on a very limited diet then supplementation with vitamins like vitamin B12 and iron is necessary.
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April 2011
Q: I've recently introduced coffee back into my diet for about a week after being diagnosed with Crohn's. I have steadily been having more and more pain. Is coffee a known irritant?
A: There’s so much that’s not known about the influence of diet on Crohn’s disease activity and symptoms. Coffee is NOT known as an irritant, but if it makes symptoms worse, then you should consider stopping it. If, however, you would prefer not to abandon coffee, you can try re-starting it after stopping for a couple of weeks. This kind of re-challenge can be useful in distinguishing something that’s harmful to you from something that seemed to cause symptoms by coincidence.
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February 2011
Q: I am on immunosuppresents, so I am not looking for immune system boosters. However, are there any anti-inflammatory supplements which could help with UC? Fish oil, turmeric, etc?
A: Probiotics may help some patients with ulcerative colitis stay in remission. While fish oil and turmeric have also been studied, it is not clear that these will help most people. The best plan is to speak with your doctor about the supplement you would like to try, in the context of the medications you are already taking.
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February 2011
Q: I have experienced severe weight loss recently. My appetite is very low and I find it difficult to eat anything. What can I do to increase my appetite and start gaining weight or combat the effects it's starting to have on my body?
A: Your low appetite may be from the inflammation in your body from IBD, or may be due to a complication of the IBD. You should speak with your doctor about whether adjusting your IBD treatment might help your appetite, and whether nutritional supplements would also help.
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February 2011
Q: Can I drink wheat grass juice? I have Crohn's disease and I am thinking about going to a juicing program to get more vitamins.
A: That should be fine. This has been studied in one small study in patients with ulcerative colitis. Just let your doctor know about any supplements to make sure there are not interactions with medications you are taking.
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January 2011
Q: Over the past year I have noticed a nickel to quarter size sore red lump located very close to my bikini area (started as one but have had two at once). It lasts quite a few weeks, is filled with some pus and mostly blood, and leaves a bruise and scar. It is not an STD. I have had Crohn’s for about 20 years and have had a rather large abscess before at the base of my butt cheek. Could this current problem also be related to my illness?
A: Crohn’s disease and ulcerative colitis can be associated with a variety of skin problems that cause inflammation. Sometimes, but not always, these skin problems will be a sign of progressive disease even if there are no or minimal gastrointestinal symptoms. Skin problems that produce swelling, soreness, and pus in and around the groin, under the breast, or under the arms may be due to something called hydradenitis suppurativa. Shaving these areas can worsen these problems. However, given the location of your lump, this may be a sign of a developing fistula. Since the skin lesions are recurring, this should be discussed with your gastroenterologist or treating physician; you might be recommended to see a skin specialist (dermatologist).
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2011
Q: I am a vegetarian. What sorts of foods can I eat during a flare that will provide me with protein and nutrients, but still be soothing and allow for healing?
A: If you eat eggs, this would be a well tolerated protein source during a flare. If you are able to tolerate milk products, then milk, low-fat and/or hard cheeses, and yogurt are all good sources of protein and other nutrients. Additionally, peanut butter (or other nut butters) and tofu should be well tolerated protein sources.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2010
Q: Our 2 yr old daughter was diagnosed with Crohn's disease at the beginning of this year. She struggles with constant constipation and has had 2 fecal impactions. Doctors have said there is no particular diet for her to follow... What can help with this constipation? She is a picky eater and sometimes only eats one meal daily. Should she be drinking supplements like Pedisure?
A: In regards to your 2 year old daughter and your concerns about constipation and bowel obstruction there are some helpful dietary modifications I would recommend. First of all, it is very important that she is getting enough calories, protein, fat and micronutrinents, especially calcium, in the diet to promote growth and development. Secondly we would want to make sure she is not consuming foods that would lead to more constipation and risk obstruction. Here are some tips to follow in terms of planning her diet: 1. Homemade shakes made with fortified soy milk, protein powder (like Spiru-tein, found in health food stores)and fresh fruit that is pureed in a blender are great sources of calories, protein, calcium and fat (if you add a tablespoon of peanut butter). I prefer homemade over Pediasure because you can add fresh fruit, like frozen mango, and it is lower in sugar. 2. High antioxidant juices like pomegranate, acai and mangosteen are fabulous sources of nutrition and help to prevent constipation. Try these juices in between meals instead of the typical apple and orange juice. 3. Try to avoid highly irritating fibrous foods like skins, seeds, nuts, popcorn, raw vegetables and high fiber grains while she has inflammation. You should give her cooked and pureed fruits and vegetables to ease digestion and get her the nutrition she needs.Soups and stews are great for meals because everything is well cooked and can be super rich in nutrients.
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December 2010
Q: Our daughter has completed her 10th maintenance round of Remicade and is doing very well. What she fights the most is fatigue - always feeling tired. She still continues her daily schedule as a senior in high school, and seems to get plenty of sleep at night. I know that it is fairly common for Crohn's patients to feel tired much of the time, but I was wondering if there was a suggested supplement or vitamin that she could take to increase her energy level.
A: Fatigue is one of those symptoms that can be secondary to a lot of different things. A lot of time the Crohn’s is blamed, but if the patient is not anemic or actively inflamed it is hard to point to Crohn’s directly. Medications can give you fatigue as a side effect, but many times undiagnosed depression is the culprit. Fatigue can be the body’s response to depression. A thorough physical exploring all of these issues is warranted.
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November 2010
Q: Would going on a liquid diet help to reduce disease symptoms?
A: Studies have shown that a liquid diet (“enteral nutrition”) can reduce symptoms, and reduce inflammation in the intestine. This is a formula prescribed by your doctor which would provide all of your nutritional needs for a period of time – usually 6-8 weeks.
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Disease Education

February 2022
Q: I was on xeljanz from last three years and i was doing completely fine. My last scope which was held on august 2021 looked good. I developed a bloody stool again recently. I am not sure its working anymore, what should I do?
A: Bloody stool, or pain or diarrhea, is not always ulcerative colitis flaring. You should talk to your doctors to see if anything else could be going on. If the blood in your stool was for a short period, it may not be your colitis.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
December 2021
Q: I am scheduled for laparoscopic surgery for ileocolic resection due to Crohn’s disease. Diagnosed at age 40 with mild disease managed with pentasa and entocort for 14 years but now have strictures one of which is ten cm. Doctor is advising that I also begin remicade but is that before or after the surgery? Does Remicade have anything to do with existing strictures? Thanks I’d also like to know how the recovery is for this surgery.
A: It is likely that your disease progressed to stricture due to ineffective treatment of the Crohn’s disease. Pentasa is not approved in the management of small bowel Crohn’s disease and Entocort should only be used for < 3 months. There are several factors that go into decision making to start therapy after lleocolic resection and it shoulds like your physician has classified you as higher risk of progression/disease. They are likely suggesting you start Remicade after surgery as preventative measure. Remicade is effective drug to prevent post-operative Crohn’s disease recurrence and recurrent disease could lead to further strictures. I would suggest that you review the recovery with your surgery team, if you have laproscopic the recovery is shorter than if required open surgery. Please visit: https://www.crohnscolitisfoundation.org/what-is-crohns-disease/treatment/surgery
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Jami Kinnucan, MD
Assistant Professor
November 2021
Q: How do you decide between a Ileostomy vs a colostomy? This will be permanent due to a complicated anal fissula that requires removal of the rectum. My left side of my large intestine has always been red and inflamed it has always been the same section but my right side has been healthy since I began medication for my Crohn's in 2009. The risk is that I would end up having another surgery in a couple of years to remove what is left.
A: The decision is usually based on extent, location and severity of your Crohn’s disease. If the majority of your colon is involved, then an ileostomy is typically performed due to issues related to inflammatory burden, colorectal cancer risk and blood supply/technical issues related to creating the ostomy. If a limited amount of your colon is involved (especially limited to the sigmoid colon or rectum, and the rest of your colon is normal as well as the small bowel, then a colostomy may be performed. This is a multidisciplinary decision based on careful review of your IBD history, medication use, body type, weight, and prior surgical histories. Make sure to consult with a colorectal surgeon who has expertise in IBD surgeries and, if there is uncertainty, sometimes it is helpful to get an additional opinion at a major IBD center.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: My 22 yr old son is a college student and takes Entyvio infusions for Crohns. I’m concerned and not finding thorough answers to whether or not he should be vaccinated for Covid. And if so, which vaccine is recommended. What are others doing in similar situation?
A: He should be vaccinated for COVID. Back in April 2021, the International Organization of IBD (which is a panel of international experts) said that we should vaccinate IBD patients with whatever vaccine we can first gain access to. All the 3 vaccines available in the US (Pfizer, Moderna and Johnson and Johnson) are fine in IBD patients. They all will need boosters as well. Of note, the response to the vaccine will be decreased by being on Entyvio, but this still confers your son a level of protection he would otherwise not have without the vaccine.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
August 2021
Q: I am a 71 year old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and also the best probiotic? I am diabetic. Thanks
A: I am sorry to hear about this new diagnosis. It is important that you work with your health care team to manage your disease. I recommend that all patients take multivitamin if you are 71 recommend Centrum Silver as a good option as long as approved by your treating physician. We don’t typically recommend probiotics as treatment of disease with ulcerative colitis (limited evidence). The best thing you can do for your gut microbiome (the bacteria that live in your gut) is to eat a well balanced diet (Mediterranean diet) high in fresh fruits and vegetables and lean proteins and low in processed foods, sugar.
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Jami Kinnucan, MD
Assistant Professor
August 2021
Q: My son has Crohns has had it 10 years he is 17 years old. He has been on Humira but it didn't work for him. Has just started Stelara. He has been having like a mucus discharge for several months. His doctor has done a colonoscopy and nothing showed on that other than small Crohns ulcers but was doctor said they wouldn't be causing that drainage. Wondering if there is anything you all have heard even diet changes that could help this.
A: If there is discharge in his underwear he may need an MRI of the pelvis to make sure he doesn’t have a perirectal fistula. If the mucus is in the stool, that could be a number of things including inflammation – I would start with a fecal calprotectin level, and if this is elevated then the ulcers are causing the mucus. If he just started Stelara I would wait max 16 weeks after starting to see an improvement, and if I don’t see one I might see if he needs to switch again – not everyone responds to every biologic and the rate of response decreases after you failed one.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
June 2021
Q: Is poor circulation a side effect of ulcerative colitis? My legs and fingers numb or in pain most of the time and now my left leg has lost some mobility. I don't see much online about it. Thank you so much for any information you can provide!
A: We can see patients that also have a diagnosis of Raynaud’s which can cause issues with circulation especially in fingers and toes. I would be more concerned about the lack of mobility in your left leg which could be a sign of something more serious like a stroke. I would recommend that you review with your primary care physician and treating ulcerative colitis provider.
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Jami Kinnucan, MD
Assistant Professor
June 2021
Q: Hi, I'm 13 years old and was diagnosed recently with Ulcerative Colitis. When I flare, my hands get super dry, scaly, bloody, and painful. It only happens when my stomach is bad. Is this related to the illness?
A: It is challenging to answer this based on what you are describing as rashes are best visualized. However that being said skin manifestations of inflammatory bowel disease are common. When this happens I would recommend you send photo to your GI provider who might consider a dermatology referral for further evaluation.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
May 2021
Q: I had my second COVID 19 vaccine 2 days ago. I have been very frightened of contracting COVID since losing a 31-y-old cousin to the disease and have not been getting together with family/friends. At my vaccine appointment, I was told that it may take me longer to get full efficacy of the vaccine than other people because I have Crohn’s and take Stelara, which suppresses my immune system. I wasn’t told how much longer to wait to get together with others. How much longer should I wait?
A: There have been initial studies concerned for the possibility of lower antibodies titers after the first vaccine dose in patients who are immunocompromised, but we do not know if this applies specifically to patients with IBD on biologics, and whether that is the case after the second dose. A recent small study, however, found that IBD patients on medical therapy mount the same response as patients without IBD after the Covid Vaccine. So at this point we do not have evidence that patients with IBD on Stelara or other biologic drugs will have a delay in immunity or difference in immunity. Our evidence suggests that after your second dose of vaccine, you can function as if you were a patient who has been vaccinated in the general population. No need to wait any longer than any other vaccinated people.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2021
Q: I am a 60-year-old woman diagnosed with UC 5 months ago. I initially reacted very well to oral mesalamine; all my symptoms stopped. Now I'm having a flare. Stool tests showed inflammation but no infection. Now my doc wants me to get another colonoscopy. He didn't give me a very good answer as to why -- and I don't want to get one if I don't have to (prep very hard for me, vomiting, etc.). Do I really need a 2nd colonoscopy within 6 months or are there other test that provide needed information?
A: There are multiple appropriate reasons to do a colonoscopy in a patient with UC. One of those scenarios is to evaluate symptoms, particularly if they have changed from before. For you, it sounds like you may have had mild symptoms that went into remission on mesalamine initially but now are having symptoms despite the use of mesalamine. It is not unreasonable to repeat a colonoscopy at this point. Having said that, it sounds like you had difficulty prepping for the previous colonoscopy. There are other noninvasive markers like stool calprotectin and stool lactoferrin that can also measure inflammation in the colon with a stool test. Additionally, if your disease involves the left side of the colon, a sigmoidoscopy, which does not require a traditional prep, may be a viable option. I would encourage you to discuss these options along with a colonoscopy with your gastroenterologist to determine the best decision for you.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for almost 4 years. I have had ongoing burning mouth problems for over a year with recently has accompanied 4 months of thrush with a peeling palate. Could this be a reaction to vedolizumab or to Crohn’s?
A: Thrush is not something we typically see with vedolizumab or Crohn’s disease. I would discuss other causes for the thrush with your PCP.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2021
Q: I am 19 and have ulcerative Colitis. I tend to use toilet 2-3 times a day and don't have diarrhea. I do get blood in my stool though, not a lot but some streaks of blood on the solid stool. I also experience slight pain whenever my abdomen is bloated. I've been prescribed Mesacol suppositories for 4 weeks and I take Mesacol 3.6 grams every day. How can I tell if I am in remission or a flare-up?
A: I think the simplest way is to have your doctor check your fecal calprotectin. It’s a breakdown product of white blood cells and it SHOULD NOT be found in stool. If it’s present in your stool over a threshold value, odds are you are flaring. If you want to figure it out on your own, it’s harder. Is your weight stable? If it’s dropping with no dieting, maybe you’re flaring. Is your energy level good? If you are napping during the day or going to bed at 9pm, maybe you’re flaring. Occasional blood in the stool is not normal, but might be your baseline if you have mild UC affecting the rectum (proctitis). If that is the case, you are on the correct medication regimen. It is possible that the disease is more extensive and the calprotectin would be good place to start seeing if that is the case.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with Crohn’s 30 years ago and had a bowel resection. I have not been on medication for 27 years. I just watch what I eat. I’m feeling good except I get bowel obstructions a few times a year which is due to a stricture at the resection site. I am interested in trying an endoscopic balloon dilation, but my GI doctor will not give me any options except taking a biologic. Where can I get info on this and see if I would be a candidate?
A: I think you are right, this stricture is unlikely to respond to biologics. It’s most likely fibrotic. You can check by seeing if you have any elevated inflammatory markers (CRP, ESR, calprotectin). If they are all normal, which based on what you are describing they are likely to be, the biologics don’t have a role. Regarding dilation, the dogma is that if the stricture is less than 5 cm, it’s amenable to balloon dilation. If it’s greater, you might need surgery. The IBD Help Center might be able to direct you to GI doctors who are versed in the literature and have dilation capabilities in their office.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I had a colectomy in 2015 and have j pouch. I’ve been battling chronic pouchitis for about three years as have done multiple treatments of Cipro & Metronidazole but have major side effects. I also tried probiotics. Are there any new treatments for pouchitis?
A: Pouchitis is a bear. I don’t have to tell you. Sometimes, all you can do is redo the pouch. There are national leaders in redo pouch surgery. Contact the IBD Help Center for info on health care providers (info@crohnscolitisfoundation.org).
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
October 2020
Q: Is it normal to have problems with sex while in a flare? I am a young woman with UC and I would like to know if there is anything that can be done about pain during sex?
A: Unfortunately, sexual dysfunction, which can include pain, is common patients with UC and CD. Please bring this up with your UC health care provider, so that they can provide you with a referral to a sexual health specialist. Sometimes given the difficulties with urgency and frequency that come with a UC flare, patients can develop pelvic floor dysfunction, in which the muscles of the pelvic floor have difficulty relaxing, which may contribute to pain. Pelvic floor physical therapy can be done, if this is found to be the cause of the pain.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: My partner has been diagnosed with Crohn’s Ileitis and she has been having terrible flare ups - always at night - her stomach swells to the size of a big balloon and is rock hard. The pain is unbearable for her. It is very difficult to watch and I feel so helpless. I have two questions: 1) Is this a normal effect of Crohn’s 2) What can I give her to ease the pain?
A: Unbearable pain should never be a normal part of Crohn’s disease. The goal for our Crohn’s patients is to be well, and in a stable remission. If your partner is in pain, she should undergo testing with her health care provider to find out why the bloating and pain is occurring, and what can be done to treat the underlying problem. Your partner’s health care provider can provide suggestions for pain control if needed as well. In the meantime, Ibuprofen and other NSAID pain relievers should be avoided in IBD patients, because frequent use can worsen GI tract inflammation. Acetaminophen, in doses as directed on the label, is an over the counter pain reliever that can be used safely for IBD patients. 5. I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual sympto
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Sushila Dalal, MD
Assistant Professor of Medicine
July 2020
Q: My fiancé was diagnosed with ulcerative colitis (UC) 13 years ago and says he never has had a major flare since his initial diagnosis. It is controlled with Lialda (mesalamine) and he gets colonoscopies once or twice yearly. He has pancolitis and each time they see quite a bit of inflammation and take many biopsies. Can you have active disease without symptoms? Is it worth the risk of additional side effects to step up treatment to reduce inflammation despite no symptoms?
A: It is certainly possible to have ongoing inflammation without symptoms. Based on your description of the colonoscopy findings, the disease is not well-controlled on current therapy. It’s always important to have a discussion with the gastroenterologist about the risks and benefits of each medication option that is being considered in order to come to a thoughtful decision that is shared, and one with which everyone is in agreement. Remember: the risks of ongoing inflammation on colonoscopy, including flares and hospitalization, surgery, and malignancy, are oftentimes bigger than the potential risks of the medications used to treat the ulcerative colitis, especially when it is severe. Symptom control is important, but ultimately, we must also strive for healing of the lining of the colon (called “mucosal healing”) and symptom control in order to give patients the best chance of being healthy in the longer term.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have Crohn’s disease and was recently diagnosed with Immune thrombocytopenia purpura (ITP). How common is it in Crohn’s patients? What are some concerns I should discuss with my doctor.
A: ITP in inflammatory bowel disease (IBD) is considered rare, with less than twenty cases reported in the medical literature. It is a type of “extraintestinal manifestation” of IBD, or a condition that patients with IBD may have that is unrelated to the gut, but is directly related to having the disease (ex include joint aches, eye or skin conditions, and blood disorders like ITP to name a few). Concerns to discuss with your doctor would be if any medications used to treat ITP interact with medications used to treat Crohn’s disease, or could exacerbate symptoms or cause worsening inflammation.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have ulcerative colitis and I want to get breast augmentation (probably a lift with implants). I have been in remission for years and in good shape. I take Apriso (mesalamine) to stay in remission. Is it safe to get cosmetic surgery? I am concerned about a possible flare up.
A: If your symptoms are well-controlled, and your colon looks healthy on colonoscopy, you are in what we would characterize as “deep remission”, which is the goal we strive towards in our patients with IBD. For an elective surgery unrelated to the bowel, this is the ideal position in which to be. A potential flare-up is always a concern, especially when the body is subjected to stress, but some flare-ups are ultimately not in anyone’s control. However, positioning the surgery at a time when you are in deep remission is the wisest choice, and one you should discuss with your gastroenterologist before going ahead with the surgery.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I am 33 years old and had a colonoscopy recently because I had blood in my stool. The doctor says I have ulcerative colitis but then I found out he took biopsies. I am wondering the purpose of the biopsies are since he knows what is wrong with me.
A: A diagnosis of inflammatory bowel disease (IBD) requires many types of testing – taking a detailed history about a patient’s symptoms, family history, and tobacco history/exposure, for example, is one crucial part. Other important information to gather includes bloodwork and stool testing, colonoscopy findings and biopsy samples, and sometimes imaging tests (cat scan or MRI for example), and sometimes even additional testing still. Taking biopsies during the colonoscopy is standard when a diagnosis of ulcerative colitis is suspected.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2020
Q: I am concerned about the Coronavirus. I have Crohn’s and I’m on a biologic. Are there any particular concerns or precautions IBD patients should take?
A: Information on the coronavirus is evolving daily. The current recommendation is universal precautions, with strict hand-washing and avoidance of individuals displaying flu-like symptoms. More information on IBD patient guidelines, high risk groups, updates and recommendation on IBD medications and other important information is available on the Crohn’s & Colitis Foundation website at: https://www.crohnscolitisfoundation.org/coronavirus-update/adults
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
April 2020
Q: I am 22 years old and have had Crohn's disease for 6 years with no other comorbidities. I've had anal skin tags and fissures during this time, and they have become progressively more irritating and painful. I've tried sitz baths and diltiazem, but they haven't helped. My GI and a colorectal specialist did not recommend removal. Are there any safe home remedies you can discuss to decrease the swelling, shrink the skin tags, or remove them all-together?
A: a. Anal fissures and skin tags are frustrating complications of Crohn’s disease. Anal fissures are ulcerations in the lining of the anal canal due to underlying inflammation, which can lead to bleeding and anal pain. These can be associated with skin tags (also known as acrochordons) and also cause discomfort. In general, persistent anal fissures may be a sign of continued inflammation related to Crohn’s disease, so speaking with a gastroenterologist to optimize Crohn’s disease therapy is recommended. Additionally, therapies, as you mentioned, such as warm sitz baths, topical analgesics and medications, such as topical nitroglycerin or nifedipine have shown benefit. These will be used for 1-2 months and then a response is assessed. In general, medical therapies will be pursued to manage anal fissures, since surgical options carry the risk of fecal incontinence and poor wound healing.
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Rajesh Shah, MD
Gastroenterologist
March 2020
Q: Does pancolitis affect life expectancy? Also, what is the risk of colon cancer in people with pancolitis?
A: Life expectancy can be affected in patients with ulcerative colitis or Crohn’s colitis when they have at lease one third of the colon involved. The increase in risk of colon cancer is about half a percent per year after 8 years of disease. For example, after 16 years of ulcerative pancolitis, the risk for colon cancer is 4%. If you’ve had the disease for less than 8 years and have no other risk factors like family history of colon cancer, then there is no increased risk to you for cancer. An exception is in those patients with ulcerative colitis and primary biliary sclerosis (PSC). The risk for colon cancer starts to increase before 8 years. The key in any case is the keep the colon in a state of remission and zero to minimal inflammation throughout the duration of disease and to attain appropriately scheduled colonoscopies for early detection of “dysplasia,” precancerous areas or polyps.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
November 2019
Q: I have been reading a lot about my Crohn’s and research into serotonin and dopamine uptake imbalances found in Crohn’s patients. I am looking for more information on the subject. Can you direct me to any resources on this subject?
A: I’m sorry, we don’t know enough about this as it pertains to IBD. For example, >95% of our body’s serotonin is in the gut, and we know that this an important molecule as it pertains to intestinal motility, sensation, and secretion. This is why a lot of us try SSRIs (typically used in depression) for symptoms of pain or diarrhea. However, whether this is a something we can manipulate to treat IBD has not been studied well, mostly because we don’t have a full understanding of the mechanisms of serotonin in regards to IBD inflammation.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: Is there research that suggest the likelihood of UC developing into Crohn’s?
A: Most of us do not think that UC develops into Crohn’s. It’s true that in 5-10% of patients, we don’t always know the difference, since there is a lot of overlap at least clinically so we categorize people as “indeterminate colitis” when we are unsure of the type of IBD. I have patients who have initially diagnosed with UC who in reality find out later to have Crohn’s, and this is in spite of all of our technology and all of our experience seeing IBD patients all day. It’s very challenging and not always straightforward. I’ll also say , however, that we are treating our UC and Crohn’s patients more similarly these days. While most people hear Crohn’s and associate this with a worse diagnosis, we all know Crohn’s patients who are very mild, and UC patients who are very sick.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohns and I am suffering immensely from the extra-intestinal manifestations that are presenting themselves as erythema nodosum and joint pain, and most painfully - Achilles Tendonitis. I haven't seen much information regarding Achilles Tendonitis linked to Crohn’s flares. Can you offer any insight and recommendations for relief?
A: Yes, Achilles tendonitis can be an extra-intestinal manifestation of IBD. It’s also known as enthesitis, which we often treat like other EIMs, but musculoskeletal EIMs are the most common but often difficult to treat, which is why we usually enlist our rheumatologists to help us.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
October 2019
Q: Tengo la enfermedad de Crohn y me gustaría saber si está bien tomar probióticos. ¿Hay algún riesgo de tomándolos junto con mi medicación habitual de Crohn? (I have Crohn’s Disease and would like to know if it is ok to take probiotics. Are there any risk of taking them along with my regular Crohn’s medication?)
A: Si bien no se ha demostrado que los probióticos sean adecuados como tratamiento de Crohn, algunos pacientes notan un beneficio de los síntomas al tomarlos. No hay riesgo de tomarlos con la medicación habitual de Crohn. (While probiotics have not be shown to be adequate as a Crohn’s treatment, some patients notice a symptom benefit with taking them. There is no risk to taking them with your regular Crohn’s medication.)
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I have 30+ year history of Crohn’s Disease. I have been on Humira for last 8 years with deep remission. I now have excessive and sudden joint stiffness and pain along with minor skin rashes. Can this be related to the medication or just another possible autoimmune issue?
A: Either one is possible. It could be the medication or another new autoimmune issue. I recommend consulting with a dermatologist and rheumatologist to discuss this and start an evaluation together with your gastroenterologist.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
August 2019
Q: I recently started Imuran. What preventive measures do you recommend on this drug to help avoid infectious risk? I fly a lot. Should I wear a mask on the plane? I work in a busy family practice medical clinic. Should I change my job if that is an option to avoid so much viral exposure?
A: The best way to protect yourself from infections is with prevention and optimization. First, you should make certain that your non-live vaccines are up to date – flu shot annually, pneumonia vaccine series, hepatitis A and B. As you are on immunosuppression, you cannot receive live vaccines like measles/mumps/rubella, yellow fever vaccine, chickenpox vaccine series. The second mode of prevention is through appropriate protective measures especially during cold/flu season. Hand hygiene and safe food handling practices are important. Being on immunosuppression doesn’t require extreme measures of caution during travel – but practical tips include bringing disinfecting wipes, hand sanitizers, etc to use as needed. You should wear a mask during travel or work if you have cold/flu symptoms as you don’t want to put others at risk for infection. Many people living with Crohn’s and Colitis work within the health care industry, If you work in the health care profession, wear appropriate face shields, eye protection as recommended based on a case by case basis.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s in January 2019. Starting in February my tongue has been white. I was checked for thrush and it came back negative. My dentist told me to use a tongue scraper but that doesn't seem to be helping. Can thrush be related to my Crohn’s?
A: Thrush is typically associated with a fungal infection that may be related to immunosuppression, particularly steroid use. I would discuss your symptoms with your health care provider as medications, dry mouth, or potentially related to IBD but other causes may be more common.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
May 2019
Q: I was diagnosed in 1997 with large bowel Crohn’s. I have been on it all, and have only been in remission a few times, not very long. Recently, my doctor told me my disease had inactive Crohn’s and he is saying it is IBS with my Crohn’s. How can I be inactive, if I have massive diarrhea 4-5 hours a day every day? What is inactive Crohn’s?
A: Disease activity is related to inflammation. It is usually evaluated by endoscopy with biopsies or radiologically with CT or MRI of abdomen/pelvis. Disease activity dose not corelate well with patient symptoms in IBD. This discrepancy is more pronounced in crohn’s disease compared to ulcerative colitis. Therefore, you can be symptomatic but have inactive crohn’s disease. In other words, GI symptoms in crohn’s disease does not have to be due to active inflammation. If your disease is inactive, then adjusting crohn’s medications does not going to help with controlling your symptoms. In this situation it is important to look for other reasons such as infections, bile salt diarrhea, lactose intolerance and functional GI/IBS like symptoms. Other possibility is celiac disease as its incidence is slightly higher in IBD patients compared to general population.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed with UC in May of 2018. I am 21 and spent 4 weeks in the hospital in August 2018 with a severe flare up. After being on Prednisone, starting Humira, etc. I have not had a period in several months. Is this normal? I am on Amatiza for constipation and I also diet(Keto). I am also experiencing a lot of anxiety from all of this. Could the medication or the diet be the reasons why I have not had a period in months?
A: During acute illness and recovery menstrual cycles can be irregular or missing. This is commonly related to functional hypothalamic amenorrhea/absence of cycle due to acute illness, weight loss or nutritional deficiencies. Sometimes resolution of acute illness, correction of nutritional deficiencies or gaining the weight do not correct the menstrual cycle irregularity. Did you lose > 10% of your body weight due to keto diet, which may be the reason for absent menstrual cycle. Pregnancy needs to be ruled out and should also look for other causes like thyroid dysfunction or celiac disease. If these are absent recommend discussing with your PCP and gyn.
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Lilani Perera, MD
Gastroenterologist
April 2019
Q: My Crohn’s Disease onset occurred when I got pregnant in 2013. Since the diagnosis and treatments I've noticed my flares almost always coincide with my menstrual cycle. Whether small pains or complete bowl obstruction flares, trouble times are always just before or occurring with my bleeding. Is this just me or is this a known factor?
A: In general, women may experience gastrointestinal symptoms around the time of their menstrual cycle. Multiple studies have been done comparing patients with IBD to patients without IBD and all groups experienced an increase of gastrointestinal symptoms around the time of their menstrual cycle. Importantly, if you feel your symptoms are consistent with a flare, speak with your doctor to run additional tests (such as blood or stool tests) to confirm this. If confirmed, then you and your doctor can discuss modifying your therapy to account for inflammation. Consider reviewing the Crohn’s and Colitis Foundation Women and IBD Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/womenfactsheet.pdf).
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I have had resolving ulcerative colitis for several years; It is kept in check mostly through Asacol, then Lialda, and now generic mesalamine. Since switching to the generic, I have had very frequent burping, at times almost constantly. I have tried taking the medicine at a different time and with a full meal, and nothing seems to help. I know this is minor considering what some people deal with, but is there anything I can do to help with the burping?
A: Increased belching has been reported with oral mesalamine usage, so your symptoms may be related to the medication. However, if you are clinically doing well with this, then I would not recommend stopping your medications. You may consider speaking with your doctor about taking another formulation, if you did better with those. In general, excessive belching can be caused either by an increased swallowing of air with eating and drinking or may be related to underlying reflux. I would recommend seeing your gastroenterologist, who will likely take a careful history to help determine the etiology for your symptoms. Unless specific symptoms are present, you will not likely need further invasive testing, such as an endoscopy. In terms of management, this is guided by the reason for the symptoms, which may include behavioral changes (related to swallowing air), discontinuation of specific foods (for example, carbonated drinks and chewing gum) or if reflux is suspected medications directed at this. Consider reviewing the Crohn’s and Colitis Foundation Mesalamine Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/aminosalicylates.pdf).
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Rajesh Shah, MD
Gastroenterologist
March 2019
Q: I was diagnosed last year with CD. I was started on infliximab and had a handful infusions since December. I've gone thru some side effects including intense urinary pain. I've had UTI's more times than I can count. Are urinary issues a common side effect after starting treatment?
A: Urinary symptoms are not a common side effect of infliximab. Infliximab does suppress the immune system and, therefore, you would be more susceptible to infections (including urinary tract infections). However, your frequency of UTI’s since starting infliximab sounds more than what I would expect to see on infliximab. I would recommend checking with your care team to see if there is anything contributing to the frequent urinary tract infections. There may also be measures that you can take to prevent them from occurring this frequently moving forward.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
February 2019
Q: I have had chronic diarrhea for at least 20 years. I’ve had 3 colonoscopies all normal other than internal hemorrhoids, but recently had an acute bowel perforation without any new symptoms and diagnosed with Crohn's. I have not yet started medication therapy, but I am trying to limit diet. How do I know what is working when some days I have no or solid BMs and then all of a sudden urgency and loose BM? What is considered a flare? How will I know when I am in remission?
A: Thank you for your question. A bowel perforation and a new diagnosis of Crohn’s disease is a tough ordeal. By saying you are “trying to limit diet,” I imagine you mean that you are attempting to treat your Crohn’s disease by adjusting your diet. Unfortunately, no specific diets have been adequately evaluated to prevent or treat Crohn’s disease. I don’t know the exact circumstances of your case but if you were first diagnosed with Crohn’s disease after a bowel perforation, that may suggest that your disease needs to be closely monitored and possibly treated to prevent recurrence. I encourage you to speak to your gastroenterologist regarding testing that can be done to evaluate the activity of your Crohn’s disease at this point. This may include labs, imaging, and/or colonoscopy. A flare in Crohn’s disease may be associated with diarrhea, fever, abdominal pain, and/or nausea/vomiting. These symptoms will vary depending on the location of the Crohn’s disease in your intestine and the degree of inflammation. Ideally, remission is a combination of absence of symptoms and resolution of active intestinal inflammation.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2019
Q: I was diagnosed with Ulcerative Colitis in April of 2018 and have been blessed to not really experience any flare ups. However, recently I have been experiencing some itching in the rectum area and was wondering what that could be caused from. It tends to occur in the mornings after having breakfast. I have tried eating different things for breakfast to see if anything changes but it seems to be the same. I was eating some cereal with grains and nuts and tried doing just eggs and bread.
A: Is there a fullness when you wipe? If yes, it might be hemorrhoids. Or, do you do something that might irritate hemorrhoids every morning, like sit on the toilet a long time playing on your phone? You can also see if it gets better with Preparation H. If it does not, you might need to speak to your GI about more testing such as fecal calprotectin or a sigmoidoscopy, though typically UC recurrence is blood and pain, not itching.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I was very recently diagnosed with Ulcerative Colitis. After my colonoscopy, my Dr removed some samples to do a biopsy, to test for Crohn’s as well. Is it possible to have both Ulcerative Colitis & Crohn’s?
A: No, you can either have ulcerative colitis or Crohn’s. Rarely, you can have something called IBD-U meaning IBD-undifferentiated, where we’re not sure in which category you fit yet. What your doctor meant was that he/she took small bowel biopsies during the colonoscopy and if these are positive for inflammation then it’s Crohn’s. If they are negative it’s MORE LIKELY ulcerative colitis but we can’t be fully sure. The two diseases are hard to tell apart, though as a rule of thumb you CANNOT have ulcerative colitis outside the colon.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: After 50 years of medically managed Crohns, I had surgery in September for a 10" resection, followed by leakage at the repair and two infection abscesses requiring drains. After 5 weeks in the hospital, I am now 10 weeks out from surgery and recovering VERY slowly. I have little appetite and am losing weight daily, with very low energy and fatigue. I need to know if this is "normal" recovery for a 78-year-old, formerly very active in good health or could it be another problem?
A: I think we should investigate a bit. The persistent weight loss is not typical and I would get a CT to make sure the abscesses are fully gone and maybe even scope you (provided the surgical site is accessible with a scope) to make sure the Crohn’s isn’t recurring instead.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
December 2018
Q: How common is pyoderma gangrenosum in a patient diagnosed with Crohn’s disease? Does lesion ever completely heal with topical medication?
A: Pyoderma gangrenosum is one of the skin manifestations that can be seen in up to 5% of patients with Crohn’s disease. The other main skin manifestation that can be seen is erythema nodosum, painful reddish nodules on the lower legs without actual ulceration or skin breakage. Antibiotics, injections of medications into the ulcers, and topical ointments all may be used as treatments and have good response. Some medications used to treat the underlying Crohn’s can help with the pyoderma.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Multiple Sclerosis (M.S). 15 years ago. I just spent 4 days in the hospital and diagnosed with UC on top of the M.S. Are the two disease related in any way?
A: Crohn’s and ulcerative colitis are considered “immune-mediated.” The same is true with M.S. With that, there is a medication that is approved for treating moderate to severe Crohn’s disease and M.S., which is natalizumab (Tysabri). This is not approved for ulcerative colitis, although it’s sister drug, vedolizumab (Entyvio) is approved for both Crohn’s and ulcerative colitis.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was recently diagnosed with a mild case of ulcerative proctitis and am having trouble finding any information about this condition. I'm frequently redirected to ulcerative colitis (which my GI has specifically said I do not have). Are the conditions different? Can you recommend any materials I can use to educate myself on my condition?
A: Ulcerative colitis comes in different forms. About 30% of patients will present with inflammation extending beyond the rectum. Some patients have ulcerative colitis of just the rectum, or last 10cm of the colon. This “proctitis” is a part of ulcerative colitis and is treated similarly like the rest of ulcerative colitis. Some patients with just proctitis can stay in remission with topical agents like mesalamine suppositories (Canasa), but others need systemic therapies with mesalamine oral products or even biologic therapy.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
November 2018
Q: I have been in a flare for the last 8 months in which I have basically experienced nothing but diarrhea every single day. Recently, I have experienced more instances of formed stools. I feel that my rectum is “out of shape” and lacks the strength to pass some of these more formed stools. I fear this could lead to constipation. Is there anything that I can do to aide in the passing of these more formed stools?
A: Even without IBD, people can suffer with poorly formed BMs, which usually has nothing to do with the shape of your colon or the strength of the colon wall. We often try fiber supplements for this. However, if you have Crohn’s or ulcerative colitis, this is a disease that can affect the rectum. Inflammation in the rectum is the most important thing to ensure that you have more formed stools. So, the answer to your question is likely that you need to work with your doctors to best control your IBD inflammation.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: I have had Crohn's since 2003 and over the past several years I have had periods of random swelling on my feet and hands not the whole foot or hand. The size is anywhere from a marble size to golf ball size. Can this swelling be associated with Crohn’s.
A: There are extraintestinal manifestations in the skin (as well as the joints and eyes) which are related to Crohn’s disease but separate from the bowels. However, I am not sure about the random episodes of varying sizes. Nothing specific to IBD or your IBD meds comes to mind, so I recommend you follow up with your gastroenterologist.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: After 20 years with UC, I had a total colectomy 5 years ago. I was recently diagnosed with Episcleritis. Is it common for autoimmune symptoms to occur in other organs, even after a colectomy?
A: Yes, you are at risk for other autoiummune disease in association with IBD, even if you don’t suffer from IBD any more. This is essentially what a rheumatologist does. The good news is hopefully episcleritis is easier to treat than UC and hopefully a rare occurrence for you.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: My daughter has had Crohns disease for almost 20 years. She has been having extreme bloating after meals no matter what she eats. She can look almost 7-8 month pregnant. What can we do?
A: Bloating can be a common symptom and it can happen for various reasons. We most commonly see bloating in patients with irritable bowel syndrome (IBS). The website can help you learn more about IBS, as we see IBS in a lot of our Crohn’s and colitis symptoms. These are essentially symptoms that may occur in the absence of actual Crohn’s inflammation. However, If she has a stricture (or narrowing) from having Crohn’s disease, sometimes certain foods, such as fibrous foods/roughage can cause bloating. With strictures—sometimes treatments are possible without the need for surgery. I would recommend follow up with your GI doctor to see if any further testing or treatments are needed.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
September 2018
Q: I was diagnosed with granulomatous colitis (Crohn's Disease) in September of 2016. I’m 19 years old and on Humira and Lialda and in remission for about 11 months. I wanted to ask about what life expectancy I can expect with my type of Crohn's disease? Additionally, how can I do my best to prevent and mitigate the risk of getting GI related or skin cancer as well as complications such as strictures, abscesses, blockages, scarring, fistulas, etc.?
A: Thanks for the question, first, wonderful news that you are in remission! The key, though, is to find out what type of remission you are in as our goal is for your Crohn’s disease to be in “deep remission” which means that your repeat colonoscopy shows complete healing with no active inflammation on biopsies. It’s important to have that relook to make sure your colon has healed as ongoing inflammation, even at the tissue level, can be associated with an increased risk of colon cancer. In terms of life expectancy, your Crohn’s disease diagnosis – especially if well controlled, should NOT impact your overall life expectancy. We do recommend that you maintain a healthy diet, follow preventative care recommendations, and see your primary care provider, gynecologist, and gastroenterologist routinely for scheduled visits, wear sunblock, get your skin exams for skin cancers, and stay on top of your vaccinations – flu, pneumonia, and HPV are the ones we would recommend for you. The most important preventative measure you can take is to keep your Crohn’s disease well controlled – the medications that got you into remission are the one you should likely stay on. Mesalamine (such as Lialda) is controversial for Crohn’s disease – you may or may not need to stay on that in the future, but I would recommend you discuss with your provider.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2018
Q: I was diagnosed with UC about a year ago after suffering from constant diarrhea, nighttime urgency, and abdominal pain for the year prior. Since my diagnosis I have been consistently taking Mesalamine and 6-MP, and my symptoms have mostly subsided, but I still have not had any signs of solid stools. Is this all I can hope for in remission, or should I consider changing medications?
A: I am happy to hear that you are clinically feeling better. The real question is if you have achieved objective remission. To assess this we use blood levels for inflammation (CRP), stool studies (fecal calprotectin) and/or repeat colonoscopy. If you have signs of objective remission or mucosal healing and still have ongoing loose stools, your provider can address other causes for diarrhea. If you have objective evidence of ongoing disease activity then this might be the cause of your loose stools, they would want to consider why you have not had a complete response to therapy (mesalamine and 6MP). There are 2 likely explanations: you are on suboptimal dosing (you need more drug) or your disease is not going to response to these types of therapy and achieve complete remission. Next steps: find out if you have ongoing disease activity and work with your provider if you do to determine why. We can often check levels of 6-MP and find out if you are on enough therapy.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: I have Crohn's Disease of the large intestines without complications. My question is my G.I. doctor wants me to have a colonoscopy every year. Is this necessary to do annually?
A: The guidelines recommend that patients that have at least 1/3 of their colon involved with disease (in your case Crohn’s colitis) should undergo surveillance colonoscopy every 1-3 years starting 8 years after disease. We base the frequency of surveillance on several factors, if your disease has been well controlled and you have histologic healing (biopsies without disease activity), no family history or personal history of precancerous changes (dysplasia) and no other risk factors for dysplasia, we might consider spacing out your interval. You can read about the recommendations in the SCENIC consensus statement or the ASGE guidelines for colon cancer surveillance in IBD patients.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: I am having a period about every 2 weeks since being diagnosed in May. I just finished a two month treatment of budesonide (steroid). Is this typical or should I consult with my OB/GYN? I am 48 so I often get a response that I am perimenopausal.
A: Patients with active Crohn’s disease or ulcerative colitis can have variations in their menstrual patterns. So it is not uncommon to see irregular menses or absence of menses until the body is healing (improved inflammation). However whenever there is a change in vaginal bleeding, I would recommend that you consult with your gynecologist to ensure that no further work-up is needed at this time.
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Jami Kinnucan, MD
Assistant Professor
July 2018
Q: Can Crohn's disease effect my teeth?
A: The easy answer is yes, without knowing what effects you might be having. Crohn’s disease can lead to malabsorption of important vitamins and minerals that can be important for overall health and can impact your teeth as well.
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Jami Kinnucan, MD
Assistant Professor
May 2018
Q: Over the past 17 years I have had Crohn's and developed clubbing of my fingers. I am being treated with Humira and have no symptoms related to the IBD. Is there anything I can do to make my fingers go back to normal?
A: Clubbing is not a very well-studied entity, though some disease or medication-related clubbing has been reported to be reversible by treating the underlying cause. Presumably your clubbing is due to your Crohn’s disease. If so, beyond continued treatment of your Crohn’s, I unfortunately do not know of any other suggestions for reversing the clubbing.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I am 44 years old, recently diagnosed with Crohn's disease, with initial symptoms having started just 2 years ago. How common is fatigue, even when GI symptoms are mild and not currently anemic. I’m on mesalamine, iron and turmeric? Can this mean the disease may not be fully controlled and/or different treatment warranted?
A: Fatigue is commonly associated with Crohn’s, but specific treatment for fatigue is not well studied. You are right to make sure that you are not anemic and to ensure that your disease is fully controlled. Your physician can help order laboratory tests, imaging studies, and/or scoping procedures to confirm that your disease is in remission. Of course, it is also important to make sure you are getting enough sleep. Another condition that is both commonly associated IBD and with fatigue is depression, though unfortunately it often goes unassessed. If your fatigue persists, please bring it up with your GI and primary care physicians so that medical conditions associated with fatigue can be assessed.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
February 2018
Q: My 14 year old daughter is on 6mp and her liver enzyme level is 116. The doctor said that was high but nothing needs to be done about it. Could you shed some light on why nothing needs to be done about a high level?
A: Liver enzyme levels can be elevated for any number of reasons including: medications such as 6-MP, infection, IBD-associated liver disease and other medical conditions. A transient or mild elevation in a liver enzyme test is not typically a cause for concern, but means that the tests should be repeated to ensure that the levels have returned to normal and are not increasing. If the liver enzymes remain elevated additional blood tests and/or imaging of the liver may be warranted. It may also be useful to have the 6-MP level checked to make sure that the blood levels are in the target range.
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Stacy A. Kahn, MD
Attending Physician Boston Children's Hospital
January 2018
Q: I have ulcerative colitis. I have lost about 20 lbs in the last two months. Is that normal amount of weight loss?
A: I would need more information on this situation to be able to answer this question adequately.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am 22 years old and have had Crohn's and ulcerative colitis since I was 5 years old. I just got over a bad flare up and a recent scope shows inflammation is almost gone. However, I have constant pain in the right side of lower abdomen that will not go away. The pain is interfering with daily activities. I have been in and out of the hospital and seen my doctor numerous times and no one seems to figure out how to decrease this pain. Any tips of how to deal with the pain?
A: This is a common scenario and I am glad that you brought it up. We know that there is a group of patients with Crohn’s or ulcerative colitis who have ongoing pain without evidence of active intestinal inflammation. The pain can be due to multiple causes including small bowel bacterial overgrowth, musculoskeletal pain, irritable bowel syndrome, etc. It’s important to work with your gastroenterologist to determine the cause of the pain so it can be adequately managed.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I have had Crohn's for about 15 years. I recently found out about the MTHFR (C677T) mutation that sounds like it has some relation to IBD. What information can you tell me about this mutation?
A: This mutation may have some relation to the development of IBD. It may place a patient at higher risk for clotting and it is associated with other disease processes so it is not specific for IBD. There have been over 200 different gene mutations found that are associated with IBD. The reality is that most patients do not have any of these mutations because IBD involves a complex interplay between organisms in the gut, environment factors like smoking, and an overactive immune system.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
November 2017
Q: The medical field is growing and advancing rapidly through the years, how come the colonoscopy procedure is so invasive as well as the small bowel follow through? Are there diagnostic tests that are much easier on the patients and less invasive? What would be the worst case scenario if a patient were to refuse those types of procedures when suffering from Crohn's Disease?
A: Colonoscopy provides actual visualization of the inner lining of the colon (large intestine) and the end part of the small intestine and allows for biopsies to be obtained at the time of visualization. Reasons for assessing the lining of the colon and the end part of the small intestine in a Crohn’s patient include screening for colon cancer, assessing for Crohn’s healing, assessing severity and extent of Crohn’s, and at times endoscopic treatment of strictures. Small bowel follow through is an oral barium contrast x-ray test, the barium contrast ingested outlines the inner surface of the small intestine. Other similar tests that evaluate the small intestine include CT enterography and MRI enterography. In order to adequately visualize the gastrointestinal tract in radiologic imaging studies oral contrast is needed. Another method to evaluate the small intestine is by capsule endoscopy, a pill with a camera that takes pictures of inner lining of the small intestine. There are specific reasons to use one test over another and the test chosen is usually influenced by why testing is ordered. In a patient that has Crohn’s involving the colon and is due for colon cancer screening, colonoscopy is the only way to screen adequately for colon cancer. When evaluating for partial small obstruction due to Crohn’s, then radiologic imaging is needed rather than capsule endoscopy since a capsule would get stuck in the intestine. The worst case scenario if someone were to refuse testing depends on the reason for ordering the test.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I was diagnosed in 2013 (UC) and currently take Apriso. I was in remission for about 2 1/2 years. I had short-lived flares in 2015 and 2016 that responded to Canasa. Both flares happened around the same time (fall). I think that I might be at the beginning of another flare, and I noticed that it's the same time of year as the other flares. Is there any research to suggest a connection to flares and their recurrence at certain times of year (i.e. seasonal issues)?
A: A very interesting question, and yes investigators have evaluated whether there is a trend with flares occurring during certain times of the year and fluctuating by season. Studies have also looked to see if flares are occurring in a specific seasonal pattern for individual patients (i.e. one patient flares every fall, another patient flares every spring). So far there has not been a consistent finding in studies published on this topic.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2017
Q: Does Crohn's Disease affect your menstrual cycle? I used to have regular cycles but for the past two years I have had about 4 cycles. Could the change be caused by the Remicade or steroids I'm on?
A: Crohn’s disease – particularly when it is active with associated weight loss, anemia, and decreased nutrition can result in abnormal menstrual cycles or missed cycles. When the anemia, inflammation and weight are corrected, the cycles do tend to return. The medications used to treat Crohn’s disease don’t typically have a direct effect on the period. However, I would definitely discuss this with your gynecologist to make certain there aren’t other additional issues such as endometriosis or fibroids or hormonal changes that can result in abnormal periods.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2017
Q: I have Crohn’s Disease and was told I was non active. Is this different from remission? If so, how?
A: Hard to Say. Today the goal is to treat to target. Target is defined as clinically inactive (clinical remission) as well as endoscopically normal. Clinical inactivity is measured by 1) absence of symptoms, 2) normal biomarkers (CRP and fecal calprotectin) or 3) CDAI score of 150 or less. Clinical inactivity, does not correlate with endoscopic activity. Remission implies clinically inactivity and endoscopically inactive.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I was recently diagnosed with Crohns Disease. My symptoms right now are very mild. Does the disease always at some point get worse? Will surgeries at some point always be needed? Also with my symptoms being so mild now would a stronger drug like Humira be best suited for me to start taking now?
A: Good Question. Prior to the use of biologic agents, studies have shown that in spite of treatment, 80-90% of patients with Crohn’s Disease, will have had surgery over a period of 30 years and many would have had several operations. Since the use of biologic agents (Remicade and Humira) we feel that the natural history of Crohn’s Disease can be changed and surgery averted. The earlier these biologic agents are used, the more likely to prevent complications (stricture and fistulae) which require surgery. Today when patients are first seen, we evaluate activity of flares, as well as the severity of the disease (its longitudinal course of the disease) and if the disease is deemed to be severe, biologics started early may prevent complication that lead to surgery.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2017
Q: I was diagnosed with ulcerative colitis in 2013 and then indeterminate colitis in 2015. I was put on prednisone and azathioprine. My doctor left and I was sent to a new doctor. They ordered colonoscopy and CT which came back showing no IBD. Can this happen because of the medication? All previous scopes, biopsies, and scans since 2013 have come back positive for IBD. I am very confused. Is it possible to get different diagnosis over time?
A: This is a very interesting thing that we have been seeing in some patients. We call it histologic normalization. We recently published something from the University of Chicago with our findings in many patients. See link below. Overall conclusions here: https://www.ncbi.nlm.nih.gov/pubmed/28238954. Histologic normalization of colonic mucosa can be used as a clinical endpoint for patients with UC. We associated histologic normalization with increased odds of relapse-free survival compared with endoscopic healing or histologic quiescence. Further studies are needed to determine whether histologic normalization should be a goal of treatment for patients with UC.
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Jami Kinnucan, MD
Assistant Professor
July 2017
Q: Can Crohn's Disease or Humira or both be linked to gum disease and skin abscesses?
A: Good question. Crohn’s disease can be associated with gum disease. Gum disease would not be a common association with Humira. With regards to skin abscesses, if you’re referring to abscesses around the anal region, then Crohn’s disease (but not Humira) can definitely be associated with this. As far as skin abscesses on other parts of the body, this can occur with immune suppression of any kind including Humira. If your gastroenterologist has not evaluated the skin sores already, it would be a good idea to speak to him/her.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I was told one year ago that I had ulcerative colitis. Is constant pain, cramps and an extended abdomen common symptoms of the disease?
A: Ulcerative colitis can present with a variety of symptoms including abdominal pain and bloody diarrhea. However, symptoms don’t always indicate that the ulcerative colitis is active. The reason is that several other disorders can also cause the symptoms your describe. Your doctor through various objective tests (i.e., imaging, endoscopy, and labs) can determine if it is your ulcerative colitis or another disorder that is contributing to your symptoms.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
May 2017
Q: Is skin cancer a risk with Remicade too or just the 6M?
A: There are some studies that have suggested that TNF-inhibitors (such as Remicade), can increase the risk for skin cancers – in particular non-melanoma skin cancers. However, some of the studies are conflicting, in part because patients on anti-TNF inhibitors are often other medications such as thiopurines (e.g. 6-mercaptopurine and azathioprine) which can also increase the risk of skin cancers. Further some studies have shown that having IBD (in and of itself) may increase the risk of skin cancers. While we await further studies to clarify this topic, I that IBD patients protect their skin by avoiding excessive sun exposure and wearing daily sunscreen, and for my patients on TNF-inhibitors and thiopurines I also recommend annual skin cancer screening exams.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
March 2017
Q: In ulcerative colitis patients, do most cases of colorectal cancer start as polyps or dysplasia? How fast does dysplasia develop and grow to cancer?
A: In patients with IBD the sequence of polyp to cancer, if related to IBD, may not follow the same sequence as regular polyps. Colorectal cancer in IBD starts with some type of lesion, but these may be very difficult to see. The timing of dysplasia going to cancer may also be accelerated. For this reason, we recommend frequent screening – every 2 years in all patients after 10 years of disease with Ulcerative Colitis, and in Crohn’s Colitis if more than one third of the colon is involved. Patients with Primary Sclerosing Cholangitis (PSC) need yearly colonoscopies as their risk for colon cancer is particularly high. As lesions predisposing to cancer in IBD may be flat rather than look like polyps, it is also particularly important to have the best preparation possible, and to have a colonoscopy performed by a physician experienced in the care of IBD patients.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I have CD for many years. I recently had colonscopy #5. Since then (3 weeks) I'm feeling like I'm still doing the prep!! Urgent rush to the toilet at all hours day and night for a big rush of blood or brown water! How do I make this symptom quit?
A: I recommend calling your provider to discuss whether you are having a flare of your disease or if you may have concurrent c.difficile infection. Colonoscopy preparations should not cause your IBD to flare, but may alter your gut flora. I would recommend discussing your symptoms with your provider.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I am scheduled for a colonoscopy. What test result information is important to know? What questions should I ask the doctor following the procedure?
A: Colonoscopies are done for two reasons: a. Screening & Surveillance for colon polyps and cancer. In CD and UC, after having the disease for 8-10 years, screening colonoscopy is recommended every 1-2 years. b. Determining extent and severity of disease and response to treatment. In regards to all colonoscopies, patients should ask the physician performing colonoscopy: a. Was my prep adequate for full evaluation? b. Was colonoscopy performed all the way to the cecum with evaluation of the terminal ileum? c. Were any biopsies done?
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: What percentage of IBD patients have both Crohn's and colitis? Are they both diagnosed the same way?
A: 1a. Patients with IBD cannot have both Crohn’s and Ulcerative Colitis. The diseases are diagnosed/differentiated by history, physical exam, blood tests and most importantly colonoscopy. 1b. Crohn’s disease and spastic colitis (IBS) is seen in 15-20% of the general population and IBD does not exclude IBS from occurring. In other words, you can have IBD and also IBS. IBS is diagnosed by history and using the “Rome Criteria”. 1c. Statics for the occurrence of Crohn’s colitis in patients with Crohn’s disease are: Crohn’s Ileitis - 30% Crohn’s colitis - 25-30% Crohn’s Ileocolitis - 40% Therefore, Crohn’s colitis is seen in 70% of patients and diagnosed by colonoscopy/biopsy.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
February 2017
Q: Is there an association between comorbidities of neurological conditions and IBD? Dysbiosis is also linked to recovery from neurologic conditions, could this be a link?
A: Neurologic disorders associated with IBD are thankfully relatively rare. It is estimated that 3% of patients with IBD have associated neurological complications. Neurological complications appear to be more common in men, and occur after IBD diagnosis. Some of the therapies used for the treatment of IBD can be associated with increased risk of neurological complications (such as infections or rarely multiple sclerosis-like effects). Some therapies (including long-term use of some antibiotics) can be associated with peripheral neuropathy, which is a burning pain in extremities. Additionally, increased inflammation from IBD does put patients at risk for blood clots, which can also affect the brain. The most common neurologic complaint of patients with IBD is headache (>50% of patients) and migraines are reported as well. Another neurological complication that has been associated with IBD is restless legs syndrome (in up to 30% of patients with IBD). We have not previously collected information on neurological conditions in CCFA Partners www.ccfapartners.org . These can be difficult diagnoses to make and often require the assistance of a neurologist. A better understanding of neurological complications in IBD is an important arena of study.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2017
Q: My 62 year old mother was diagnosed with UC a year and a half ago and has developed pyoderma gangrenosum on her leg. She has four lesions ranging from the size of a nickel to the size of tennis balls. She recently started Humira. How long on average does it take for the lesions to heal? Are there cases where the skin condition does not heal?
A: Pyoderma gangrenosum is a rare skin condition that can be associated with UC. Because it is rare, there is not much data available. We do know that the rates of response to Infliximab (Remicade) and Adalimumab (Humira) have been high, though unfortunately, nothing is 100%. The information we have is limited to a few people, but it suggests that patients often saw some improvement with a few weeks of starting an anti-TNF medication like infliximab or adalimumab. However, complete healing often takes several months.
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Sushila Dalal, MD
Assistant Professor of Medicine
January 2017
Q: My daughter has hidradenitis suppurativa which the doctors think is associated with the Crohn's Disease. She has flare ups in her vaginal area as well as her armpits. Can this be a symptom of Crohn’s disease and if so, how is it treated?
A: HIdradenitis suppurativa(HS) is not a symptom of Crohn’s disease, but there does seem to be some relationship between the two disease—people who have one of the two conditions are more likely to also have the other. HS is often treated by dermatologists, as it is a condition of the skin. Some possible treatments include antibiotic creams, steroid injections, or oral antibiotics. For more severe disease, treatment with medications that are also used for Crohn’s disease, such as infliximab (Remicade) and adalimumab (Humira) have also been used.
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Sushila Dalal, MD
Assistant Professor of Medicine
November 2016
Q: I have severe stomach bloating. I look like I’m pregnant. Can IBD cause severe bloating? What can be done to reduce the bloating?
A: Bloating may a symptom of active IBD. Bloating can also occur due to other conditions that may be present in patients with IBD. These conditions include: small bowel bacterial overgrowth, celiac disease, irritable bowel syndrome, lactose intolerance, among others. Your symptoms should be discussed further with your doctor, to better understand the cause. A diet low in fermentable oligo-, di-, and monosaccharides and polyols, called a “low FODMAP” diet, may be helpful. Your doctor can provide you will further details about this diet, or other treatments for your symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2016
Q: Please discuss medical cannabis vs opiates for pain management. I have RA as well and the NSAIDs are a nightmare for my Crohn’s.
A: While some patients report relief of their abdominal pain and nausea with medical cannabis, there is growing evidence that there may be negative effects on the brain - especially with long term use. These can be memory and attention problems, slowed reflexes (when driving) and for some patient development of anxiety, depression, and feeling paranoid. At the moment there is not enough evidence for the medical community to say how safe medical cannabis is but it is being studied.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have Crohn's and have joint pain that is constant, despite my guts being in remission from Humira. I am interested in finding non-drug ways to cope with the pain. I've had some success with acupuncture. What alternative approaches have been shown to help with IBD related joint pain?
A: There is some evidence that acupuncture can help patients with irritable bowel syndrome. For IBD, there are small studies showing benefit of yoga and mindfulness meditation.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: How do you deal with chronic mouth ulcers
A: There are numbing agents that you can swish in your mouth that your gastroenterologist can tell you about. Hypnosis can also be very useful for helping ulcers.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Can you talk about the impact of disrupted sleep on Crohn's disease and what is being done to help patients who have these issues (who aren't on steroids)?
A: Disrupted sleep can make IBD worse- worse inflammation, more pain, and also predisposes people to more anxiety and depressed mood. Disrupted sleep can be having trouble falling asleep, multiple awakenings or not getting enough sleep. Many medical sleep societies recommend all adults need 7-9 hours per sleep a night. Most important things to do to help sleep disruption is doing enough physical activity during the day to be tired by night, good sleep hygeine (so no bright lights including computers or cell-phone screens in bed) and going to bed and getting up at the same time each night. Sleep can now be monitored on gadgets like fitbits or also apps like sleepcycle.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: For pain management does an IBD patient need to go to a pain management specialist or solely to the gastroenterologist or both?
A: Different GI clinics or practices have different ways they handle pain management. Some gastroenterologists have algorithms that they try first. Many have psychosocial resources available who specialize in pain. Pain experts can be counselors or pain anesthesiologists who can sometimes have success with nerve blocks, TENS units, or vagal nerve stimulators- though these latter techniques have not been well studied.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Part of the discomfort I feel is caused by a feeling of moving around in the intestine - it gurgles and can be quite loud. Doctors seem to dismiss this symptom but it is actually one of the worst parts of the illness (at least for me). It makes it hard to concentrate on much of anything when your insides are rolling. Is there anything you might suggest for easing the discomfort?
A: To ease the discomfort you describe, you might consider distraction techniques. These are either activities you can do to forget about the gurgling or mind techniques such as meditation or hypnosis. To learn about certified medical hypnotists in your area, you can go to the website of the American Society of Clinical Hypnosis. There are also some good apps available to help teach meditation like headspace.com. Finally, there are educational stress management websites such as www.gameplan.com that can give you ideas too.
ANSWERED BY:
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: I recently had a small bowel series, it showed that I had focal narrowing in small intestine with possible structure findings concerning for underlying IBD. They did an MRI a week later, nothing showed up on MRI. I'm so frustrated. I have been struggling with trying to find out what's going on with my stomach for years now. After small bowel series I thought I finally had an answer. Now I'm back to square one. Is it still possible I had inflammation and then it wasn't present at time MRI?
A: I can understand your frustration. Typically, an MRI is a better test for a stricture than a small bowel series. It may be that the small bowel series findings were falsely positive. If there is ongoing concern for IBD, there are potential lab tests that may be helpful as well.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have UC diagnosed in 2008. It got very bad, 30 plus episodes of diarrhea a day and heavy bleeding. Now I'm struggling with constipation and a hard distended stomach as well as 10 plus episodes per day of passing just blood and tissue. I take stool softeners to keep things normal and reduce pain and bleeding. I am concerned about a blockage or maybe Crohn's in addition to UC, but my imaging doesn't seem to support either of those things. Is what I am experiencing normal?
A: Thanks for your question. It’s difficult to say exactly what may be going on without having more information. If you’ve had a colonoscopy and your UC is controlled (i.e., there is no active inflammation), there may be other causes for your altered bowel movements. The constipation may be caused by medications, irritable bowel syndrome, small bowel bacterial overgrowth, etc.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: How often should a 70 year-old male with Crohns disease have a colonoscopy?
A: This is a very good question. Unfortunately, the answer is more complicated. It’s important to realize that the goals of Crohn’s disease treatment may be different based on a patient’s overall health. Advanced age can occasionally be associated with declining health but not always. Generally, in older age, we treat Crohn’s disease to control symptoms. In younger age (i.e., age <40) , we treat Crohn’s disease to heal the intestinal inflammation and control symptoms. In general, patients who are diagnosed with Crohn’s at age ≥60 have the same risk of developing colorectal cancer as patients diagnosed with Crohn’s at an earlier age. Colonoscopy in Crohn’s disease may be performed to evaluate intestinal disease activity or evaluate for colorectal cancer from long-standing Crohn’s disease and patient age. There is no consensus on this approach but in my older patients regardless of whether they have IBD or not, I do colon cancer screening colonoscopies if the patient can safely undergo surgery in case we discover malignancy. In older patients in whom I am considering a colonoscopy to evaluate for active inflammation, I take into account the patient’s other illnesses before proceeding. I would speak to your provider about the risks and benefits of performing a colonoscopy.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: I often hear of ulcerative colitis, but what are microscopic colitis and lymphocytic colitis? Are these types of IBD? Can a patient have both UC and another type of colitis?
A: Lymphocytic and collagenous colitis are the two types of microscopic colitis. They fall within the spectrum of inflammatory bowel disease but behave very differently than Crohn's or ulcerative colitis. A patient generally has either Crohn's or ulcerative colitis or they can have microscopic colitis but not both.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What is gastroparesis? Can you have IBD and that at the same time? Can it be confused with IBS?
A: When there is a delay in emptying of the stomach contents into the small bowel, this is termed gastroparesis. Patient may have a sensation of fullness, nausea, and vomiting. Gastroparesis and IBD can be going on concurrently. It is possible that gastroparesis and IBS may be mistaken for one another.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2016
Q: Can microscopic colitis change to ulcerative colitis? Or just misdiagnosed? And any relationship between UC and rheumatoid arthritis?
A: And any relationship between UC and rheumatoid arthritis? Microscopic colitis is made up of collagenous and lymphocytic colitis. I have seen microscopic colitis patients who then go on to develop Crohn's or UC but this is uncommon. Microscopic colitis and IBD are diagnosed and behave differently though and the diagnosis should be more clear after an evaluation. UC and rheumatoid arthritis can be found together as they are both autoimmune disorders. You can learn more about microscopic colitis here: http://www.ccfa.org/resources/microscopic-colitis.html.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Do you use the fecal calprotectin test to monitor your patients GI inflammation? If so, at what intervals?
A: 90 days? I do use fecal calprotectin as a marker for inflammation. There's data that shows it can help predict a flare. I know GIs who use it every three months. In my practice, my use is based on the individual patient.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Are there any issues with birth control pills exacerbating UC or Crohn's symptoms in women?
A: Estrogen-containing birth control pills have been associated with development of Crohn's in the past and recently there was a study suggesting that it is associated with a worse course of Crohn's. I would discuss this with your GI.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2016
Q: I have UC which has not bothered me much. I take Sulfasalazine, Folic acid and a Probiotic. In the last 2 weeks, I’ve been having a flare up. I have very loud gurgling in my stomach area, with mucus/bloody discharge. I have not changed my diet at all. Is the gurgling a UC symptom and what causes it? How do I get it to stop?
A: This may not be a UC flare at all. I usually tell my patients that symptoms of a flare are most likely similar to how you felt when you were diagnosed. A lot of my patients have irritable bowel (IBS), which often leads to gurgling and mucous. Stress can make this worse. At this point, if you feel that this is a flare, I'd consider repeating some lab work and perhaps doing a stool study to evaluate for infection. I'd communicate this with your GI doctor/nurse.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have had Crohn's for nine years now and have been on biologics for 6 years. About a year after I started Remicade I noticed I started getting scalp psoriasis. Since then it has gotten worse. I’ve tried about every medication on the market. Is it possible that Crohn's can cause other inflammatory illnesses like psoriasis or can biologics cause it?
A: Yes, you can sometimes develop psoriasis and other skin problems from the biologics like remicade. However, remicade is also used to treat psoriasis. I'd recommend seeing your dermatologist. The reality is that Crohn's disease usually has other autoimmune skin disorders that go along with it, like psoriasis, so this may not be because of your drugs but rather related to having Cron's disease.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
June 2016
Q: I was diagnosed with UC in 2007. I am taking Rowasa sachet and have been in remission for last 2 years. Since I am in remission do I still have to go for a regular c olonoscopy? If I am in remission is there still there a danger of colon cancer? remission is there still there a danger of colon cancer?
A: There are 2 main reasons to perform colonoscopy in ulcerative colitis: (1) to assess disease activity and monitor response to therapy and (2) to screen for precancerous and cancerous lesions. Long standing inflammation of the colon is a risk factor for colon cancer. Other risk factors for colon cancers include family history and long duration of the disease. Depending on the disease location, many gastroenterologists will start screeningfor colon cancer after 8-10 years of diagnosis of ulcerative colitis. Screening for colon cancer via colonoscopy is usually planned at a regular interval of 1-2 years. Clinical remission is different from histological remission. If you are not having symptoms, this is called clinical remission. Histological remission would be when there is no active inflammation on the biopsy. Once you achieve histological remission, you may discuss with your physician to extend the interval of colonoscopy for colon cancer screening but you would still need colonoscopy for colon cancer screening. We hope that in future we develop other non-invasive methods to screen for colon cancer.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I have UC and I read that fecal microbiotic transplantation (FMT) might be a cure for UC. How can I get a FMT for UC treatment? Is the treatment only for active UC?
A: One study conducted by Dr. Moayyedi and colleagues assessed patients with active UC and administered them 50 mL enemas once a week for 6 weeks. They compared these patients to those receiving water enemas. 9 of 38 patients receiving FMT achieved remission with improved clinical scores and endoscopic scores (camera assessing the lining of your intestine for healing). Only 2 of 37 patients receiving placebo improved. Notably, 7 of the 9 patients who were in remission received stool from the same donor. It may be that some donors have possess specific types of therapeutic microbes but we have yet to determine what these specific collections of strains may be.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: What exactly is fecal microbial transplantation?
A: Fecal microbiota transplantation (FMT) is a procedure where stool is taken from a healthy donor and placed inside the intestine of a patient who may be suffering from a number of symptoms. It is hoped that the patient’s intestinal microbiome will be re-colonized similarly to the donor’s intestinal microbiome. This re-colonization may help some patients recover from their symptoms. Presently, FMT is considered investigational but has demonstrated particularly good efficacy in managing patients suffering from recurrent or refractory Clostridium difficile infection (CDI).
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: My daughter was diagnosed with cd Sept. 2015 and has been on Remicade but a new symptom we notice sometimes she small leaks from her rectum. Is this a normal side effect?
A: I would recommend that your daughter’s gastroenterologist examine her perianal area at their next visit. Crohn’s disease can cause fistulas (connections from the rectum to the skin), and a physical exam could check for any sign of fistula. Crohn’s disease can also cause skin tags in the anal canal that may contribute to leakage symptoms. This would also be seen on physical exam. I would recommend watching for fever, pain, or redness in this area as a sign of a developing infection. If that occurs, call your gastroenterologist to be evaluated.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
April 2016
Q: I was diagnosed with UC in 2014 . My dr. prescribed me Lialda but I still bleed with every trip to the bathroom . My flare ups have progressed and he only prescribed a steroid . While on medication is it common to still be bleeding every time I use the bathroom?
A: If you are experiencing ongoing bleeding and flare ups despite Lialda therapy, it is important to be sure that you do not have an infection, Clostridium difficile, which may cause diarrhea and bleeding. If there is no evidence of infection, it is possible that your dose of Lialda is not high enough. Your doctor may consider increasing your Lialda to a dose of 4.8 g (4 tablets) daily. Addition of a mesalamine suppository or enema may help to increase the dose of mesalamine in your rectum and sigmoid colon, to improve disease control. Lialda begins to be released in the end of the small intestine. By the time the medication reaches the rectum, the concentration of the medication is lower and some patients need additional mesalamine delivered directly to the rectum by suppository or enema to control disease. If this does not improve your disease control and you continue to have diarrhea and bleeding, you should be evaluated with a colonoscopy to reevaluate colon inflammation. If there is ongoing active inflammation despite your therapy, you may need to consider an immunosuppressive therapy such as azathioprine, mercaptopurine, infliximab, adalimumab, golimumab, or vedolizumab to gain control of your disease, and to avoid recurrent steroid use, which is the most dangerous therapy in the long term.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: I have been diagnosed with Crohn's. I frequently get blisters on the roof of my mouth. Is it normal to get these blisters in my mouth? I am being treated with Imuran.
A: Crohn’s Disease can involve any part of the GI tract from “mouth to anus”. The mouth blisters may very well be due to Crohn’s Disease and may respond to a change in therapy, including use of a topical steroid medication. However, you would also want to exclude a drug side effect or certain viral infections that could cause similar findings.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I am a 30 year old female, and I want to get pregnant. I have been following up with my GI, and haven't had any flare-ups in over 2 years. She just did a sigmoidoscopy and wants me to wait due to some inflammation in the rectum. The doctor has informed me that everything needs to be clear/in remission. What are the risks of getting pregnant with inflammation in the rectum and if it is necessary to wait as I have been feeling great with no symptoms?
A: In general, pregnancy outcomes are better if underlying inflammatory bowel disease is in remission. Your question reflects the distinction between “clinical” remission (the absence of symptoms) and “deep” remission (the absence of symptoms and signs of inflammation). The latter usually implies a normal endoscopic appearance of the bowel. Most of the data regarding pregnancy and disease activity has relied on clinical remission. It would be helpful to know exactly how much inflammation was seen. If the inflammation is minimal (based on accepted systems such as the Mayo Clinic score ) and you have no symptoms, it would be safe for you to proceed with pregnancy. If the inflammation is more significant than suggested by symptoms, a change in treatment may be indicated before proceeding with pregnancy.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have UC and my OB-GYN knows little about pregnancy and IBD. When I’m ready to get pregnant will I need to switch to a new OB-GYN. How can I find an OB who knows how to treat pregnant women with IBD?
A: Your local gastroenterologist is likely the best resource for an OB that is familiar with IBD. I recommend all my pregnant IBD patients are followed as high risk, so by a maternal fetal medicine specialist. They may not deliver the baby, but they monitor for growth (very important since IBD patients can be too small) and for complications in the mother. There is an article to help OB’s take care of pregnant women with IBD. The reference if you would like to share with your OB is Care of the Pregnant Patient with Inflammatory Bowel Disease. Mahadevan, Uma and Matro, Rebecca. Obstetrics and Gynecology. 126 (2): 401-412, August 2015.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I would love to know what medications are "safe" and which ones aren't during pregnancy.
A: The unsafe medications are methotrexate and thalidomide which should be stopped at least 3 months, ideally 6 months, before getting pregnant. They are both associated with severe birth defects. I will also often take patients of mesalamine as it has dibutyl phthalate in the coating which in animals is associated with birth defects. An increase in birth defects has not been shown in humans with mesalamine, but as none of the other mesalamine drugs have DBP, I switch. The other IBD medications are generally low risk but discuss further in detail with your GI doctor as every patient is different.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have been experiencing a lot of bleeding and blood clots. I often have the urge to go to the bathroom but I am unable to pass anything but blood. I’ve been on prednisone since Dec 1, 2015 with no relief. My doctor has stopped my Asacol and Humira in preparation for me starting Entyivo in the next week. Is it normal not to be able to pass stool when in a flare up?
A: An exacerbation of ulcerative colitis or Crohn’s can sometimes present with difficulty passing bowel movements (rather than diarrhea) due to significant inflammation in the rectum (UC or CD) or due to a stricture from CD. It is important to inform your physician of these changes, so your medical treatment can be modified.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have CD. I also have achalasia, treated with Heller Myotomy surgery. Difficulty swallowing is now under control but still have regurgitation, nausea and discomfort in upper torso. I also belch excessively (300 +/day). I’m having a hard time finding information for this atypical CD symptom. I would like to learn more about this topic what can you tell me about this condition and are there any research articles on this issue?
A: The lower esophageal sphincter (LES) fails to completely relax in achalasia leading to difficulty swallowing food. The most effective treatment for this is a Heller myotomy, the cutting of the LES resulting is a constantly relaxed LES. This allows food not to get stuck and accumulate in the esophagus. Relaxing the LES, though, increases the risk for gastroesopheal reflux. An intact LES prevents gastric fluid and debris from refluxing backwards into the esophagus. It is important to follow gastroesophageal reflux precautions such as keeping the head of the bed elevated when sleeping and avoid eating 2-3 hours prior to sleeping. Acid suppressive therapy will likely be needed as well. Your physician can further counsel you on your symptoms and treatment.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I had a resection in April 2015 and I’ve had a lot of problems since. I am now battling indigestion and heart burn. I take famotidine twice daily but it does not help. What are some other treatment options?
A: Symptoms of indigestion and heartburn suggest gastroesophageal reflux. Treatment for gastroesophageal reflux includes dietary and lifestyle modification and acid suppressive medical therapy. Your physician can review your symptoms in more detail to see if there is a trigger and if/how it may related to your surgery. Medication options aside from histamine receptor antagonists (such as famotidine) include proton pump inhibitors.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2015
Q: I had a 2-step jpouch surgery in 1996. For the last two years I’ve had significant problems with bleeding ulcers in the pouch. I also had 3 APC (argon plasma coagulation) procedures to try to stop bleeding in last 3 months and 8 iron infusions in last year. I’m still bleeding. Would these types of problems indicate that its time to go with perm ileostomy? How extensive is this procedure?
A: While undergoing a pouch procedure can improve overall quality of life, many complications such as stricture, stenosis or pouch dysfunction often occur. Pouchitis is the most common complication following pouch surgery, and is a common cause of bleeding and anemia. Inspection of the pouch by endoscopy may show diffuse inflammation which bleeds easily when touched. Less common are discrete ulcers which bleed. Although pouchitis may be the cause of these ulcers, it is important to note that sometimes the original diagnosis of ulcerative colitis may have been incorrect, and that Crohn’s disease may actually be the underlying disease. This is best diagnosed by biopsies of the ulcers. If the biopsies show chronic inflammation consistent with pouchitis, treatment with steroid enemas or oral antibiotics such as Ciprofloxacin or Metronidazole may be of benefit. If biopsies suggest Crohn’s disease, medical management with TNF-alpha blockers or 5-ASA enemas may be helpful. If medical therapy fails to improve your symptoms, surgical treatment including removal of the pouch and conversion to an end ileostomy may improve the overall quality of life. This type of surgery can be very difficult due to extensive scarring, and should be performed only by surgeons comfortable with re-operative pelvic surgery.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I was diagnosed with Crohn's in 2006 and had a bowel resection 2008. I never show signs of inflammation on any of the blood or stool samples. Is this uncommon?
A: No this is not uncommon. Depending on the extent of your disease prior to surgery it could take a while to come back or if you are one of the lucky few there is a very small chance that it may not. Again that depends on the extent and location of the disease prior to surgery. There is no way to know for sure. It is certainly encouraging though but should be followed closely. The current recommendation would be to jump back in with a biologic medication at the first sign of inflammation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: My results for the IBD differentiation blood test showed a high proteinase 3 (PR3) autoantibody levels, of 3.4 ai, with a note attached from the lab about a high result indicating an active disease state of a syndrome called wegener's, or GPA. My GI doc just said it supported his observations and diagnosis of UC. Are there other tests that can be done to confirm a diagnosis of UC?
A: You had a test that is in a category called “serology”. This looks for antibodies that your body is making. Antibodies are made by cells of your immune system in response to proteins found on foreign invaders such as viruses and bacteria and such antibodies are an important part of our body’s defense. In individuals who have a disease or illness that involves their immune system, it is common for them to also make a antibodies against proteins found in their own bodies. These “self-directed” antibodies are what were measured by the test you had and the result is consistent with you having a condition that involves your own immune system. The best way to know if you have ulcerative colitis is the entire clinical picture including your history, physical exam findings, negative stool cultures and findings on your colonoscopy.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: Colonoscopy vs MRI? If one has already had one or more colonoscopies, and the GI is asking for a follow-up test, is an MRI a good alternative? Is it easier for a patient to do an MRI? Anything unpleasant to expect? Colonoscopies are quite an ordeal!
A: I am sorry to hear that you had such difficulty with your colonoscopy. An MRI and colonoscopy look at different aspects of your gastrointestinal tract. Keep in mind that your intestine is a tube. The colonoscope looks at the inner lining of that tube. The MRI looks across the wall as well as the rest of your belly (abdomen). So, if the question is whether your IBD is actively causing inflammation of the lining of your intestine, the best test is a colonoscopy. If the question is whether there is damage occurring across or outside the wall of the intestine, an MRI is a better test.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I have had Crohn's Disease for five years and been on Remicade for 4 years. My treatment is going well. However I have gurgle sounds from my stomach after eating meals. Sometimes the sounds are quiet other times very loud. My MRI showed that everything looked normal and there were no narrow areas. Can this be related to CD? What can cause this gurgling sound and how can it be stopped?
A: It is very good that you already had the MRI. This test is recommended for IBD patients over CT scans to decide if there are strictures as there is no radiation involved. Sometimes you need a dedicated MR Enterography rather than a regular MRI to answer this question. Provided that there is really no stricture, you could have small bowel bacterial overgrowth, which is an imbalance in the bacterial flora of your small bowel, typically related to surgery but also possibly caused by diabetes, thyroid problems, or aging. There is a simple breath test you could do to decide if you have this condition and the treatment is 2 week course of antibiotics. Other possibilities for gurgling could be malabsorption of a specific component of your diet, such as dairy or fiber. You can consider limiting these two components from your diet and see if the gurgling improves.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
October 2015
Q: I have both Crohns and Candidiasis. The diets for each seem to be mutually exclusive. I've been eating the same few foods for two years and am going nuts. What can I eat?
A: I find that diet is such an individual topic that can not be generalized to groups of people. There is no diet identified that clearly causes or treats Crohn’s disease when studied in groups of patients. I would recommend that you avoid foods that give you symptoms. It sounds easy, but can be challenging to try to identify trigger foods. Adding foods back one at a time is the best strategy. A food diary can often be helpful as well. The CCFA has published a patient handout to help give advice (http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf) and you may find it beneficial to meet with a registered dietician to help customize your diet.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
September 2015
Q: I was recently diagnosed with UC after an emergency room visit. I feel like the hospital just told me the diagnosis and sent me away. I have so many questions! Will I have to have regular colonoscopies? Will I need to change my diet? What are my next steps?
A: I suggest that you join the CCFA and go online to review two sections on the “Newly Diagnosed” website: About IBD and Monitoring Your Disease: http://www.ccfa.org/what-are-crohns-and-colitis/newly-diagnosed.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am newly diagnosed with Crohn's after 20 years of symptoms. I also had diabetes for 20 years now I am experiencing a major Crohn's flare. I am insulin dependent (I have been able to limit/control both in the past). What can be done to manage sugar levels with my Crohn's meds? Can Crohn’s and diabetes be related?
A: Crohn’s and diabetes are not related, but both are common conditions, so there are many patients who will have both conditions. Good control of Crohn’s disease and in particular avoiding frequently or long term treatment with steroids is important. Aim of treatment for Crohn’s disease is “steroid free remission.” Good control of blood sugars will require a strict, healthy low glycemic diet and regular exercise. If blood sugars become suddenly difficult to control, suspect a complication of the Crohn’s disease (i.e.: infection, fistulae, or flare).
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2015
Q: Is there much literature regarding Crohn's and chronic Lyme disease (also known as MSIDS)?
A: To my knowledge there is nothing in the literature linking Crohn’s disease to chronic Lyme disease or Multi-system Infectious Disease Syndrome (MSIDS). There is a great website to search the medical literature using key terms if you had further questions about what has been published on either condition, it is PubMed www.pubmed.com and is available to everyone.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Is it possible to have Crohn's when literally every test has been negative including multiple biopsies? I have all the symptoms of Crohn's
A: It is hard to say without knowing that evaluation you have had and what has come up negative. But if you have had a thorough evaluation including assessment of your small bowel and there have not been any changes to suggest Crohn’s disease then it is unlikely that active Crohn’s disease is causing some of your symptoms. We often think that if Crohn’s disease is causing significant abdominal symptoms that we shouldn’t have to look that hard to find the disease, severe symptoms. If you have any questions about your symptoms or your diagnosis, it might be helpful to seek a second opinion with any of the IBD providers listed on www.ccfa.org
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: My knees have started with tightness in the back and then swell up all around knee caps to the point of no weight barring. Back and forth and sometimes both. Doc said it may all be tied in to my CD. I am about to start Remicade hoping it will calm things down. Are problems with the knees a common CD symptom?
A: Extra-intestinal manifestations of Crohn’s disease are actually quite common. One of the most common manifestations is related to joint pain and/or swelling called peripheral arthritis. In some patients their joint symptoms parrellel their bowel symptoms (when their bowel disease is active they notice that their joint symptoms are most active) and this can often improve with treatment of underlying bowel inflammation. Less common is a type of inflammation of the joints that happens independently of bowel inflammation (no bowel symptoms but have joint symptoms) but is less likely to involve larger joints like the knees. It is also possible that people can have joint symptoms are not related to their Crohn’s disease and could represent a primary rheumatologic condition. If your physician has decided to start Remicade and you have improvement in your joint symptoms that would be great.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Given the national shortage of methylene blue and indigo carmine what are your centers using for chromoendoscopy?
A: While there have been several reports of a national shortage of indigo carmine, I have not heard of a shortage of methylene blue. I have asked around at several IBD centers in the area and have not heard of anyone being impacted by the shortage and not being able to obtain either product.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: What is ischemic colitis?
A: Ischemic colitis refers to inflammation of the colon (colitis) due to low blood supply to the colon. Although the disease is not common, it is more likely to be seen in older individuals and can manifest as symptoms of abdominal pain, diarrhea, rectal bleeding. There are a variety of conditions that can result in ischemic colitis, the most common being low blood flow due to low systemic blood pressure or local factors effecting blood flow like constriction of blood vessels or blood clot, but often a cause can’t be identified.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I was recently diagnosed with mild distal ulcerative proctitis. I'm 44 years old and I am concerned about the risk of it spreading to other parts of my GI. I can't seem to find any consistent stats on that risk of it spreading. What does the latest research show? And, is it possible for it to go away completely?
A: a. There is a chance that the colitis could spread higher up in the colon. The chance of that over the next several years is probably between 10 and 30%. The inflammation will not spread to other parts of the GI tract. If inflammation does turn up in the small intestine or stomach then a diagnosis of Crohn’s disease needs to be considered. b. The proctitis is unlikely to go way completely, but proctitis sometimes seems to have longer periods of inactivity, without need for medicine, than more extensive colitis
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I was diagnosed with CD 28 yrs. ago. Nine years ago I had a resection of my small intestine at the illiim w/ a dx of cancer followed by chemo treatments. Six years ago, I had colon cancer followed by chemo treatments. Both cancers were found by colonoscopies. I understand the 10 year colonoscopy rule for colon cancer, but my concern is w/ my crohn's which is in my illium (came back) & in my duodenum. How often should I be screened for both these sections & what is the preferred screening
A: There is no absolute guideline for this situation. It is almost certain your doctor will not allow you to go 10 years between colonoscopies. Exactly how often colonoscopy should be done will depend on details such as the activity of your Crohn’s. b. As you know, colonoscopy can only see a very small part of the small intestine. Surveillance to prevent small intestine cancer is typically not done because small intestine cancer is much, much less common than colon cancer Your case is difference, however. Discuss this with your doctor. There are different ways to monitor the small intestine including a video capsule device, MR scan or CT scan.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: Would you say that you are in actual remission when you are still having a lot of bleeding every time you go to the bathroom and/or still having horrible joint pain?
A: These symptoms sound like your inflammatory bowel disease may not be in remission. There could be other causes of the bleeding and joint pains, such as hemorrhoids and primary joint disease, but this needs to be discussed with your GI doctor and/or primary doctor.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2015
Q: I am 15 years post IPAA surgery and have developed iritis. I am told that it is an extra intestinal manifestation of UC. Is there any information available about these or other symptoms developing after colectomy? Also what type of specialist should I consult to deal with the systemic part of UC, as my GI feels only qualified to treat the digestive system? I of course also have an eye specialist, but it seems like there should be someone coordinating the treatment of the overall disease
A: There are reports of iritis occurring after IPAA surgery for UC but this not commonly. Iritis can occur with other medical conditions than UC so the eye doctor in collaboration with the primary care provider can decide on any further appropriate evaluation. If you are not having any gastrointestinal symptoms with the iritis, then the eye specialist (such as an ophthalmologist) is an appropriate person to address this issue. Otherwise, unless there are other symptoms after the IPAA for UC, you do not necessarily need another provider to manage your case.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I had a colonoscopy today my doctor said my Crohn's is in remission. However 3 weeks ago I had imaging test and it showed active disease. I'm confused . I had Crohn’s for 30 years and never been in remission and I don't feel any different. What are the definitions for remission and active disease?
A: Thank you for your question. This is a question that comes up often in different forms. Active disease refers to ongoing active inflammation of the intestinal lining, which can be detected by labs, imaging, and/or colonoscopic evaluation. These diagnostic tools often agree with one another but not always, and if the location of active disease is accessible by colonoscopy (i.e., in the colon or terminal ileum), this tool remains the gold standard for evaluation. Ideally, the definition of remission in Crohn’s disease is the combination of no active intestinal inflammation and an absence of disease-related symptoms. However, because symptoms associated with Crohn’s are also present in other
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Is the IgA and IGa test a good way to diagnosis Crohn’s disease, when all other tests were negative for IBD?
A: Immunoglobulins or Ig are not typically used in the diagnosis of Crohn’s disease. The three scenarios that this test may come up in the evaluation for IBD are: 1) Evaluation for celiac disease, which is associated with IBD, as celiac disease and IBD can have overlapping symptoms 2) Evaluation for common variable immune deficiency (CVID) which can have overlapping symptoms with IBD 3) As part of an antibody panel used by many providers (aka as the IBD-7 panel). These panels can include antibodies like ASCA, ANCA, Anti-ompC, etc, and are often associated with IgA or IgG. This antibody panel is rarely helpful for a diagnosis of IBD, especially when used alone. IBD is typically diagnosed based on a combination of clinical symptoms and history, endoscopic evaluation (with biopsies if needed), imaging, and labs.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Crohn's Disease has been a part of my life since 1977. I have had a total colectomy with rectum removal and of course ileostomy. I am currently on no meds except b12 every other month. What is the likely hood that the disease will return? Is there any research on this?
A: Great question. There is some research on this topic but it depends on a couple different things. If before your total colectomy and end-ileostomy your disease was isolated to your colon, then the risk of recurrence with an end-ileostomy is low, about 10-20% over 5 years. If before surgery, the colon inflammation was associated with small bowel inflammation or inflammation around the anal area (i.e., abscesses or fistulas), the risk of Crohn’s disease recurrence would be higher.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
May 2015
Q: My 29-year-old daughter ran a half marathon one and a half weeks ago. Since then she has had continuous bloody diarrhea. The GI dr plans on doing a colonoscopy. Is there any danger in doing a colonoscopy while she is still experiencing the body diarrhea?
A: No, a colonoscopy would be good to do carefully when someone is having a “flare” to determine whether she truly had a flare, or perhaps had colon ischemia, which happens in runners, when not enough blood flow gets to the intestines. The treatments are different.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: My son was diagnosed with crohns and not tested for cdiff. He has been treated first with asacol and then lialda and now on Remicade. Is it possible to have an accurate test for cdiff.?
A: Yes, the C diff should stay accurate if he has it, regardless of his medications.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I was diagnosed with diverticulitis when I went to the emergency room. About 6 months later I was in terrible pain on left side of stomach and bleeding again went back to emergency room where they ran some tests and told me I had colitis. I have been having these problems with my stomach on and off for about 4 years. Once you are told you have a colitis attack does that mean its forever?
A: “Colitis” is a general term to mean inflammation of the colon, which ER doctors will either tell you without a proper exam, or if they see inflammation in the colon on a CT scan. We get this with diverticulitis, food poisoning, infections, IBD, lots of things. So, I would see a GI doctor, as the ER and a CT scan is not a reliable way to diagnose ulcerative colitis or Crohn’s disease.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I have been having a lot of red blood in my stool for a week. I called my gi and they started me on prednisone. But I feel very tired, lower back cramps, headaches. I feel like I want to vomit and have lower abnormal cramps. Could I these symptoms be caused by the blood loss or a side effect of the medication.
A: Fatigue and cramps can be from having active inflammation in the colon, but all of those symptoms can also be from steroids. It really depends on your problem. Do you have Crohn’s or ulcerative colitis? If so, steroids are not a good long term solution anyway, and having these diseases be out of control will also cause all of the above symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: My husband was diagnosed with unspecified crohns/colitis. I asked the doctor what unspecified crohns/colitis means. He said that it was colitis of the entire colon. They did the camera pill thing last year and nothing showed up. What I don't understand is what is the difference between ulcerative colitis and "colitis"? Is there are difference. The doctor now says it is just colitis not crohns. Can you help me understand the diagnosis?
A: Generally speaking inflammatory bowel disease is divided into two categories, Crohn’s disease and ulcerative colitis. Crohn’s disease involve any part of your gut from mouth to anus with most common part being the end of small intestine and beginning of the large intestine. Ulcerative colitis, as the name implies, only involve the colon and rectum- your large intestine. Colitis simply means inflammation of the colon, just like arthritis means inflammation of the joint. Colitis can be caused by infections (infectious colitis), chronic inflammation (such as ulcerative colitis) and decreased blood supply (ischemic colitis). When Crohn’s disease involve colon, it’s called Crohn’s colitis. Most of the time physicians and pathologists can tell the difference between ulcerative colitis and Crohn’s colitis. In some instances, about 10-15 percent of the cases, it is difficult for the physicians to tell the difference between the two and they call it indeterminate colitis. We are learning more about this entity and its behavior and response to medications and long term prognosis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have a hurting under my right ribcage. I have had my gall bladder out and still hurt there. It feels like a fist and hurts from the front to my back. The Dr. sent me for a CAT scan and says I have colitis, although I don't have any of the other symptoms. I would think I would have some of the other symptoms to be colitis. Would a CAT scan show only colon problems?
A: Computerized axial tomography (CAT or CT ) scan uses x-ray and computer technology to create images of the human body. CT scan provides images about internal organs, soft tissue structures, blood vessels, and bone. CT scans are usually completed in sections of the body. To evaluate the region of your discomfort the CT scan is usually of the abdominal location and would show the anatomy of the organs, soft tissue, vessels, and bone in this location. The organs in this location include the stomach, colon, small intestine, liver, spleen, pancreas and kidneys. The information from CT scan along with the clinical picture (your symptoms) usually helps determine the next course of action. I would recommend follow-up with your physician to see if CT findings explain your current symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: The Igg in my blood was over 25. I also have anemia. Colonoscopy, endoscopy, GI series, and MRI all came back normal. I had a lot of diarrhea, until I was put on Entocort EC. Can you still have Crohn's disease without inflammation showing up on any of the tests?
A: Usually for a new presentation of chronic (>4 weeks) diarrhea and anemia, many potential causes are considered such as include infections, celiac disease, inflammatory bowel disease (Crohn’s or ulcerative colitis). If the anemia is not related, then potential causes are even broader, such as microscopic colitis, endocrine related (hyperthyroidism, low cortisol level) and medications. Crohn’s disease is defined by having ulceration involving the lining of the intestinal tract and biopsies of the tissue confirming inflammation in a specific pattern. Sometimes it is difficult to locate the area of inflammation due to length of the intestinal tract, > 25 feet long. If none of the tests, including capsule endoscopy, reveal ulceration then another diagnosis for your symptoms should be considered.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2014
Q: Is there a high risk of C-diff in ulcerative colitis patients?
A: Yes, there is a higher risk of C diff in ulcerative colitis patients. It is important to test for this infection in the setting of new diagnosis or flare of previously quiet colitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2014
Q: I have ulcerative colitis. It seems no matter what I eat or do, I feel bloated constantly! Right after I go to the bathroom (when I can, that is) I’m still bloated! I use Canasa 1000 mg. I just started taking activated charcoal capsules. Am I going to feel fat and bloated the rest of my life?
A: Bloating may be a sign of many things including a reaction to the Canasa, constipation from the ulcerative proctitis, small intestinal bacterial overgrowth, etc. If you are having difficulty moving your bowels, this is the likely cause of the bloating. However, this difficulty can be because you have inflammation in the rectum blocking the output or, if colitis is under control, can be a more functional issue. You should discuss the possibilities with your doctor.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2014
Q: I’ve had Crohn's for almost 30 year and had a bowel resection surgery about 27 years ago. After surgery I went into remission for 10 years. I am doing Remicade every 4 weeks. I recently had my annual colonoscopy and they have discovered precancerous cells near the resection scar. My doc has recommended another colonoscopy in 6 months, but has not said much regarding the cells. What does this mean for me? How long until the cancer diagnosis comes? What can I do to delay that?
A: Surveillance colonoscopies are performed routinely on all patients with Ulcerative Colitis and Crohn’s disease. While the data are better established for ulcerative colitis, the same is considered to be true for Crohn’s: after having the disease for 8-10 years the risk of neoplasia (either pre-cancer (called dysplasia – which can be high grade or low grade) or cancer) increases by 0.5% - 1% per year above the general population. Factors that have been shown in studies to contribute to and exacerbate that risk include: duration of disease, severity of disease, extent of disease, concomitant Primary Sclerosing Cholangitis, family history of colon cancer. Anytime that pre-cancerous cells are found in IBD patients in the setting of inflammation, and not in a sporadic polyp (which can be completely removed like a polyp in a non-IBD patient can), there exists the potential for concurrent malignancy or the development and transformation. There is no guarantee that it will transform into cancer but impossible to predict. You should speak to your physician about the risks and benefits of surveillance colonoscopy and surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2014
Q: My daughter is 36 years old was diagnosed with Crohn’s about 6 years ago. She has been on humira for the past 2 years and it has worked well. She recently gave birth to a healthy baby boy. She was on humira throughout her pregnancy and is now breast feeding. Can the baby receive the vaccination for Rato virus, which is a live virus, if she is on humira and is breast feeding? I heard that patients on humira should not receive live vaccines. Is this the same for the baby?
A: Humira has not been associated with an increase in birth defects when used during pregnancy. However, there is active transfer across the placenta so the baby is born with detectable levels of humira which can last up to 6 months. During this time, live vaccines should not be given. In the US the only live vaccine is rotavirus. All other inactive vaccines can be given on schedule during this time and live vaccines scheduled for 1 year can be given on schedule.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: I've had Crohn's for 43 years and have coped well. I am scheduled to have a stoma relocation/revision from right to left . I am very nervous about the surgery. I would like the surgery performed using twilight and epidural as opposed to general anesthesia. Is this possible? I am told that there is a 2 to 3 day hospital stay and 2 weeks bed rest. Is a shorter recovery period possible?
A: Having a stoma revised and relocated can be a major operation depending on how much scar tissue the surgeon encounters at the time of surgery. Generally these operations are performed under general anesthesia. Revising a stoma can be done under epidural and sedation. Revising the stoma often means that the outlet has become narrowed, retracted below the skin level or a small hernia has developed. In this case, the surgery is generally less involved and the recovery is much shorter. If your surgeon has told you that the stoma is going to be relocated, that involves entering the abdominal cavity and moving the stoma to another location in the abdominal wall. This would require general anesthesia. The length of hospital stay depends on how well your pain control is post-operatively and how soon you regain bowel function. This is usually 3-5 days in the hospital and then 4 weeks recovery if all goes well.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: I was diagnosed with Crohn's Disease 17 years ago. The first 12 years were ok with, rarely a flare up. The past 4-5 years I've been experiencing many flare ups and problems. In October 2013 I had an Ileostomy surgery. Then last month a surgery to remove 1 foot of intestine. There were plans to reconnect but Dr. was unable to reconnect as there was too much inflammation. Therefore another surgery is planned. I’m worried about all these surgeries. What are the risks of so many surgeries?
A: Any operation on the abdomen is associated with risks during the immediate period following the operation as well as the long-term risk (5%) for blockage of the small bowel secondary to scar tissue creating adhesions. The small intestine is responsible for absorbing nutrients from the foods we consume, and an adequate length of small bowel is needed to ensure that an oral diet can maintain a healthy state of nutrition. In patients with Crohn’s disease, repeated operations to remove segments of the small intestine can result in a condition called short-bowel syndrome that sometimes requires TPN to supplement the patient’s nutrition by direct delivery of nutrients into the blood stream. Although operations for Crohn’s disease are generally avoided unless medical therapy is deemed inappropriate or ineffective for a variety of reasons, several procedures such as strictureplasty can be used as an alternative to removal of the small intestine in an attempt to prevent the development of short-bowel syndrome
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: I am scheduled to have 5 cm of my ileum removed, which is very small compared to what many people have removed! However, I learned that they are going to remove my appendix at the same time. Why? Is that necessary? What if down the road we find out it is good for something?
A: The last segment of the small intestine (terminal ileum) leads into the first part of the large intestine (cecum) and the junction between the terminal ileum and cecum is called the ileocecal valve. Crohn’s disease commonly affects this terminal ileum and/or cecum. The appendix arises from the base of the cecum and its role is poorly understood.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
May 2014
Q: Why are the symptoms of UC so intense in the morning? Frequent bowel movements for a 2-3 hour period, with intervals lessening during that time.
A: Motility studies evaluating the rectum in patients with active ulcerative colitis show that rectal inflammation can lead to a sensitive, hyperactive and poorly compliant rectum. When ulcerative colitis is limited to the end part of the colon (rectum and sigmoid) symptoms such as tenesmus are common. Tenesmus is the passage of small stools with a sense of urgency and incomplete evacuation. A likely reason why symptoms are worse in the morning is the change of position from the recumbent position, while sleeping, to a sitting, standing or ambulating position while awake. More debris and fluid likely moves to the end portion of the colon (rectum and sigmoid) with the change in position due to gravity leading to tenesmus . The urgency and frequency may ease once debris from the rectosigmoid region is cleared but may persist if inflammation is severe.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: Is the clinical course and progression of ulcerative colitis less severe in Asian patients than in Caucasians? Are cancer risks different or the same in Asian patients?
A: There have been several studies suggesting that Asians have less severe ulcerative colitis and lower colectomy rates compared to other ethnicities. Many of these studies were in non-American Asians, but a recent study from a health care organization in California showed similar results. Asians are a heterogenous group and more data is needed to know about specific ethnicities. More data is needed to know if cancer risk differs from other ethnicities.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I’ve had Crohn’s Disease for 10 years and been on remicade for the last two years. I am fatigued all the time. Are there any foods or vitamins I can take to help boost my energy level?
A: Fatigue may be a consequence of factors related to Crohn’s and the treatment for Crohn’s, but may also not be directly related to the disease. An evaluation to determine the cause for the fatigue is recommended and correcting the underlying cause. An evaluation by your gastroenterologist would typically include evaluation for anemia, malnutrition, and active disease Crohn’s disease which may play a role in causing fatigue. If anemia is present, then vitamin deficiencies should such as iron and B12 can be low in the setting of Crohn’s disease. B12 deficiency may also cause fatigue without having anemia. Fatigue may not be directly related to Crohn’s. Factors such as hypothyroidism, infection, heart disease, unbalanced diet (in caloric enteric or nutritional value), inadequate sleep and lack of exercise may contribute. I recommend keeping your provider informed of your symptoms to allow for an appropriate evaluation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: What is a neo-end ilestomy?
A: An end ileostomy is created with an operation; the end of the small intestine (ileum) is connected to the abdominal wall and empties into a bag called an ostomy bag. With this arrangement the small intestine is not connected to the ‘downstream’ bowel. The terminal ileum is the very end of the small intestine where it empties into the colon (large intestine). When part of the terminal ileum has been removed the remaining ileum is sometimes called the neo (new) terminal ileum.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
April 2014
Q: I have had several surgeries. I have had a colostomy/ileostomy and a Hartmann’s pouch since 1989. Just recently, I am having a discharge from my rectum several times each day, and my doctor has no answer. What is causing this? Prednisone seemed to help, while I was on it for two weeks … any ideas?
A: The bowel lining is called mucosa because it secretes mucus. Patients who undergo creation of a colostomy or ileostomy without removal of the rectum can intermittently pass this mucus. Some people will pass mucus a few times each day while others will rarely discharge any mucus; most patients’ frequency is found to occur somewhere between the two extremes. The out-of-circuit bowel can also be inflamed secondary to the patient’s underlying disease or lack of mucosa nutrients normally contained within the waste. This inflammation can cause passage of blood tinged mucus that is usually of little clinical significance.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2014
Q: Does a CT-Scan show Polyps and diverticulitis?
A: CT imaging of the abdomen and pelvis can show either polyps or diverticulitis. A special imaging technique called CT colonography generates three-dimensional images to examine the inside of the colon that is otherwise only seen with colonoscopy. CT colonography is merely a diagnostic procedure, and a colonoscopy is required to remove any identified polyps. CT colonography is sometimes unable to differentiate stool from smaller polyps and may not be as reliable as colonoscopy. Lastly, CT colonography is generally not recommended for patients who have active Crohn's disease or ulcerative colitis because of an increased risk of perforating the colon. Standard CT imaging is used to diagnose diverticulits, which represent an inflammatory complication of pre-existing diverticulosis.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
March 2014
Q: What is a Neo-end illestomy?
A: An ileostomy is when part of the last portion of the small intestine, or the ileum, is brought out through the abdominal wall, usually in the right lower quadrant and fecal matter is collected in a bag connected to an appliance that fits over the stoma. An “end” ileostomy is usually done when the colon is removed and the ileostomy is most often permanent. A “loop” ileostomy by contrast is generally temporary, with the colon usually being left in place, so that it can “rest” or heal while the fecal matter is diverted through the stoma. “Neo” just means “new” so this might imply that the ileostomy has been redone with a small amount of ileum removed.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: Since the onset of my symptoms I have experienced excessive cold sweats that begin as soon as I wake in the morning and continue throughout the day until early evening. I was curious if this is a symptom of UC, or could I be dealing with another issue. My GI does think that is just my body trying to fight the inflammation in me. I do not have a fever when this occurs either. I was wondering if this is a symptom of my UC, and any suggestions for dealing?
A: Excessive sweating would be an unusual symptom of UC in and of itself. Other considerations would be a side effect of steroids, which are commonly prescribed in UC (although should just be used for short term therapy), menopause, low blood sugar, infection, and rarely an early sign of cancer such as lymphoma (but usually they are night sweats and also occur with other symptoms such as weight loss). There is an entity called “idiopathic hyperhidrosis” for which there is no underlying medical cause of the sweating. I would suggest consulting with your primary care doctor as well as your GI doctor. Certainly if your UC is not well-controlled both by symptoms and by colonoscopy, then it’s appropriate to discuss optimizing treatment for your UC. If the sweating were a symptom of the UC, then it should get better/remit when the UC is in remission.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: I was diagnosed with left sided UC 4 years ago. I have been on 6mp for 2.5years, and have always been prescribed Prednisone when I flare and it seems to work almost immediately. I have been in a "raging flare" for 1.5months with a co-occurring C-diff infection being treated by Vancomycin. I have constant excruciating pain that even the strongest medications in the hospital can't control. Do you have any advice?
A: You first need to clarify with your doctor whether he/she believes your symptoms at this point are more from recurrent CDiff, active UC or a combination (vs other). This opinion should be informed by CDiff testing, blood work and colonoscopy/biopsies. Depending on the outcome of this discussion/evaluation, other questions to ask: 1) do you need a different/longer treatment for the CDiff? 2) Do you need different treatment for the UC: are you on the right dose of 6-MP? Optimal drug dose is based on weight and how you metabolize the drug (your “TPMT” activity), as well as your white blood cell count and liver enzymes. You might want to discuss with your doctor whether your dose has been “optimized” and whether doing “metabolite” testing to see whether you are on a sufficient dose is possible. If your dose is optimized, then you should talk with him/her about other available therapies for UC. Steroid use should be kept at a minimum.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: I recently had a colonoscopy. The doctor did endoscopy tattooing. and also removed 5 large polyps. My urine is very blue. How can the indigo ink get into the bladder?
A: What has likely happened is that a small portion of indigo carmine dye was absorbed into a blood vessel and entered the circulation, where it was filtered by the kidneys, collected in the bladder, and then was excreted during urination. This is reported and should not cause alarm. In fact, one of the original uses of this dye was to measure kidney function. It is generally harmless and will clear after a short period of time.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: What is a sedimentation rate? Is there a standard level for each person? How is the sedimentation rate lowered?
A: The erythrocyte sedimentation rate is a blood test that can help healthcare providers track inflammation. It is a useful test, measuring the speed of erythrocytes descending through a special collection tube to assess systemic, body-wide inflammation. In IBD, it is essential to monitor inflammation with objective tests, as significant activity may not cause symptoms. Colonoscopy, CT-scans, and MRI are excellent tests for inflammation but they can not be frequently performed because of risk, expense, and inconvenience. ESR is a reasonably priced blood test that is easy to perform and provides non-invasive data regarding inflammation. The limitations of ESR are (1) it may not be elevated even when significant bowel inflammation is present, and (2) it is not specific for bowel inflammation, any inflammation can elevate the level. Despite these limitations, in selected patients ESR can be monitored to reflect how patients are responding to therapy. ESR or CRP that remains very elevated (your doctor will determine whether elevations are due to IBD) may indicate that a change in treatment is needed. In the coming years, more accurate non-invasive markers of bowel inflammation will become widely available, including stool tests of inflammation like fecal calprotectin and lactoferrin.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: I was diagnosed with Crohn's disease three years ago. I had pancreatitis, uveitis, and abdominal pain. My doctor started me on Entocort and my fatigue seems a little better. I have uveitis right now and feel like I have a hard time concentrating and I wanted to know if that's due to my uveitis and dry eye or could it be a symptom of Crohn's? I also do not experience the diarrhea that is a common symptom can that happen?
A: The uvea is the middle layer of the eye, just below the sclera. Inflammation of the uvea is called uveitis. Iritis and iridocyclitis are subtypes of uveitis. Uveitis may result in painful, red eyes. This condition is seen in people with Crohn’s disease but is not considered to be Crohn’s involving the eye as uveitis can occur in people without Crohn’s. Painful, red eyes – or any change in vision should be evaluated by an ophthalmologist as soon as possible. Treatment is often with medicated eye drops. Do not assume the symptoms are just from dry eyes. A nice discussion of inflammatory bowel disease associated eye problems can be found on the CCFA website: http://www.ccfa.org/assets/pdfs/eyes.pdf. Not everyone with Crohn’s experiences diarrhea. It depends on the amount of intestine that is involved and the behavior of the Crohn’s. Some people get narrowed areas in the intestine that may actually slow the bowel down.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: After an appendectomy about 6 weeks ago, I have suffered the worst UC symptoms I've ever experienced. Is this possibly related to the appendicitis?
A: It is not clear why your UC symptoms worsened after the appendicitis. Perhaps antibiotics were used around the time of the appendicitis, or maybe your UC medication had to be stopped for a while. You should discuss your current flare with your doctor.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am writing a report on IBD and wish to get information about the number of people with the disease in Connecticut.
A: Two major epidemiological studies on estimates conducted in the United States, one in California and the other in Minnesota. The results for both studies are included in “The facts About Inflammatory Bowel Disease” http://www.ccfa.org/assets/pdfs/ibdfactbook.pdf. Information from these studies as well as information on Connecticut population data will assist you in identifying an estimated number of people with the disease and estimated number of new cases.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: Can ulcerative colitis cause small intestinal bacterial overgrowth, or vice versa?
A: Ulcerative colitis is not likely to cause small intestinal bacterial overgrowth. However, it is thought by some researchers that small intestinal bacterial overgrowth may be relatively common, so some people may have both ulcerative colitis and bacterial overgrowth. There is much ongoing research looking at the role of bacteria in ulcerative colitis. However, at this time, small intestinal bacterial overgrowth is not considered a cause of ulcerative colitis.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2013
Q: Is cimzia safe to take if my husband and I plan on having more children?
A: The anti-tumor necrosis factor agents – infliximab, adalimumab, golimumab and Certolizumab – (B) are considered low risk during pregnancy and compatible with lactation. Infliximab and adalimumab are IgG1 antibodies and therefore are actively transported across the placenta in the 2nd and 3rd trimester. Levels of drug are detected in the cord blood at birth and in the infant for up to 6 months from birth. Certolizumab is a Fab’ fragment and crosses the placenta only passively so levels are minimal at birth. While the use of adalimumab, golimumab and infliximab during pregnancy has not been associated to date with any increase in infections or immune development, infants exposed in utero should not receive live virus vaccine for the first 6 months of life. In the United States the only live virus vaccines up to 6 months is rotavirus. The mother and the pediatrician should be aware of this risk as well as that all standard attenuated vaccines can be given on schedule and with good response. To minimize placental transfer, in my practice, I give the last dose of infliximab at about week 32 gestation and adalimumab and goliumab at weeks 36-38. If the patient has active disease, they should continue on schedule. No change to timing of dosing or vaccinations is needed for Certolizumab. However, all infants exposed to anti-TNF agents in utero should be monitored closely by their pediatrician for unusual infections. Based on this, if you plan on getting pregnant soon, the best anti-TNF choice for you in certolizumab (Cimzia)
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2013
Q: What is leaky gut syndrome?
A: Leaky gut is a loose term used to describe hyperpermeability of the gut, or too much space between the cells lining the gut. The consequence of this is that gut contents can more easily seep out into the body and blood stream and potentially cause an inflammatory response.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have a history of mild colicky pain in abdomen in on and off nature, decreased appetite, low grade fever (20 days), weight loss, weakness for 4-5 months. Examination (colonoscopy and CT scan) suggested IBD (possible crohn's diseae). However biopsies indicates non specific colitis and rule out IBD. I am prescribed sulfasalazine and budesonide tablet. I have 4-6 bowel movement/day but no pain. Please guide if I should get further examination done to confirm diagnosis of crohn's disease.
A: A diagnosis of Crohn’s disease is based on a constellation of findings on endoscopy and pathology. Imaging of the small bowel is usually needed as well to determine the extent of disease. The findings mentioned do not confirm Crohn’s but also do not eliminate it as a possibility. Early in the disease process specific findings on pathology may not be present and over time may change to one that is more specific for Crohn’s. So, a follow-up colonoscopy with biopsies several months later may helpful. There are blood tests (such as saccharomyces cerevisiae antibody) for Crohn’s but there absence does not eliminate Crohn’s as a possibility. Of course, your physician should consider additional diagnoses.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have had Crohn's disease for 33 years and was recently diagnosed with a high grade retroperitoneal sarcoma. Before surgery I will undergo radiation therapy and am very concerned about how this will affect my IBD. I have not been able to find much information on this topic. Can you direct me some literature or website? Anything would be appreciated. Thanks.
A: In a review by Chon et al, published in the Oncologist, the effects of radiation therapy in patients with inflammatory bowel disease were assessed. The largest study (28 patients) evaluating the effects of radiation to disease activity, 21% has severe acute effects and 29% severe late effects. There was no control group. The risk was higher for late effects in patients without radiation therapy precautionary measures. Precautionary measures included lateral decubitus position, proton beam therapy if available, smaller fields, scheduled rest periods. Reference: Chon B, Loeffler J. The Oncologist. 2002;7:136-143
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2013
Q: Is there any guidance for the frequency of having a colonoscopy for someone with long standing Crohn's (30 years)?
A: The major governing organizations in the field of gastroenterology (American Gastroenterological Association and American College of Gastroenterology) have developed recommendations for patients who have ulcerative colitis (UC), with similar guidelines for individuals who have Crohn’s disease involving the colon. These guidelines were developed due to increased risk for colorectal cancer in patients living with ulcerative colitis and Crohn’s colitis and are based on the extent, duration, and age of disease onset. Individuals who have pancolitis (colonic inflammation in all or most of the colon) should have a surveillance colonoscopy 8 years after diagnosis, and individuals who have left-sided colitis should have a surveillance colonoscopy 15 years after diagnosis. After this initial surveillance colonoscopy, colonoscopy should be repeated every 1-3 years. If a patient has both colitis and primary sclerosing cholangitis (PSC), it is recommended that they have a colonoscopy annually after initial diagnosis. It is important to have this discussion with your gastroenterologist since guidelines will need to be adjusted based on how the individual is doing. There may be additional things to consider depending on the individual patient, including the degree of inflammation in the colon, any prior history of pre-cancerous changes in the colon prior to, or during diagnosis, and family history.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: Could stress cause my daughter to develop IBD or an ulcer? About six months ago she started having "stabbing pains like needles" in her stomach. We have taken her to the doctor repeatedly, he ran blood work, but said everything is "normal." She has weight loss, repeated illnesses, lowered immune. What tests can you recommend?
A: We often blame stress in the development of peptic ulcer disease by increasing the amount of acid produced in the stomach. However, it has been shown that most ulcers in the upper GI tract (stomach/duodenum) are caused either by a specific type of bacteria known as Helicobacter pylori (Helicobacter pylori) or by non-steroidal anti-inflammatory medications (NSAIDS) such as ibuprofen. A person with Crohn’s disease also could develop inflammation and associated ulcers within the entire gastrointestinal (GI) tract, including the stomach and duodenum. The evidence that directly links stress and ulcers is not as clear. Laboratory studies (i.e. blood and stool tests) can be helpful to check for factors like ongoing inflammation and to evaluate for other things that may feel similar to ulcer-type pain (like inflammation in the pancreas or gallbladder). However, if your daughter already has established IBD, and recently experienced weight loss and other symptoms they may be consistent with an IBD flare, additional testing including endoscopy, additional blood work, and stool tests, may need to be done to better evaluate the intestinal tract. These concerns should be discussed with your primary gastroenterologist to formulate a plan to determine whether your daughter’s symptoms are directly related to her IBD or another medical issue separate from this.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: What are the chances of being misdiagnosed with Ulcerative Colitis (UC) and actually having Crohn's disease (CD)? I recently had my colon removed and had a J-pouch created. What are the symptoms to look out for if it is actually Crohn's?
A: When an individual has the “classic” changes associated with CD, including involvement of the GI tract outside of the colon, especially in a part of the small intestine closest to the colon known as the ileum, patchy areas of disease/inflammation known as “skip lesions” (normal, non-inflamed areas of intestine alternating with inflamed/diseased areas), or involvement of the perianal area, the diagnosis of CD is much more clear. Furthermore, there are certain changes when pathologists look under the microscope to look at the biopsies from colonoscopy which may be consistent with CD, and certain types of CD (structuring, penetrating – fistulas) which will be seen either by endoscopy, radiographic studies (i.e. MRI enterography, upper GI series with small bowel follow through), or at surgery. A patient typically is diagnosed with UC when there is continuous inflammation within the affected colon without involvement in the GI tract outside of the colon (by endoscopy, PillCam study, and radiographic studies), and biopsies show chronic inflammation without the microscopic findings associated with CD. In patients who have to undergo a colectomy (removal of the colon), the removed colon is sent to the pathologist to determine whether the patterns of inflammation or more consistent with UC versus Crohn’s colitis. Even with the rigorous and careful evaluation by your medical team before and after the colectomy, we find that a percentage of patients originally diagnosed with UC actually have CD. Follow-up care with your gastroenterologist and surgeon is important. If you have any symptoms of cramping, diarrhea, bleeding, weight loss, or pain with passing bowel movements, it is important to let them know. Having these type of symptoms does not mean you necessarily have CD rather than UC, but is something that should be investigated to make sure that there are no ongoing issues like pouchitis (inflammation of your J pouch), infection, or issues with the surgical sites.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
December 2012
Q: When my Crohn's disease is flaring, I shake, or vibrate so bad it wakes me up. I'm not diabetic. Is this from Crohn's?
A: Chills or rigors are episodes of shaking or shivering that can be associated with a fever. It is an automatic response that occurs for a variety of reasons, and is often a sign that suggests inflammation or infection such as that seen with active Crohn’s disease. Shivering involuntarily occurs when someone feels cold and acts to raise the body’s temperature. The trigger point at which this response occurs is set in the brain and has been described as an internal thermostat. With inflammation or infection, chemicals called pyrogens reset the trigger temperature. This in turn tricks the body into feeling cold and shaking occurs to raise the body’s temperature.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn's about a year ago and by most markers/symptoms I'm in remission yet continue to have periods of fatigue that I didn't have prior to my diagnosis. Is it common/normal to struggle with tiredness even though in every other way I'm fully in remission?
A: Fatigue is a symptom commonly seen in patients with Crohn's disease symptom and can exist for several reasons. While a flare of Crohn’s disease can cause someone to feel fatigued as his or her body is fighting inflammation, fatigue can also occur when the disease is in remission for other reasons such as anemia, depression, or medications. Anemia linked to the decreased production or gradual loss of red blood cells is commonly seen in patients with Crohn’s disease and can lead to fatigue. Chronic diseases such as Crohn’s disease are also often accompanied by emotions such as sadness or depression, and these disorders can cause fatigue. Lastly, fatigue can be a side effect associated with certain medications used to treat Crohn’s disease such as methotrexate, sulfasalazine, and steroids. Any feelings of fatigue should be discussed with a physician so he or she can look for the cause and recommend appropriate treatment. It is also suggested that patients with fatigue eat a healthy diet, exercise on a regular basis, and get an appropriate amount of sleep each night.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is cause and treatment for black stool?
A: Black stools can occur for a variety of reasons in patients with Crohn’s disease and appropriate treatment depends upon the cause. Certain medications such as iron and bismuth or particular foods that are blue, black, or green colored can also cause black stools. More importantly, black stools can occur because of slow bleeding from inflamed bowel lining; the red blood turns the stool black as bacteria in the stool interact with the blood. The source of bleeding is usually located in the stomach, small intestine, or right colon. Bleeding closer to the rectum or anus more commonly causes the stool to be red instead of black. It is important to discriminate between black stools caused by medications and foods versus bleeding from the bowel wall. This symptom, especially if it is new in onset and persistent, should be reported to a physician so that proper evaluation and treatment can be initiated.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is the best way to diagnose an adhesion in the small bowel? Should you use small bowel X-Ray series, CT Scan, MRI, and/or colonoscopy?
A: Small bowel adhesions are commonly seen in anyone who has undergone prior abdominal surgery, but adhesions cause difficulties only in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. Colonoscopy cannot generally identify small intestine adhesions because the procedure inspects only the inside and not the outside of the large bowel. Imaging studies such as MR enterography and CT enterography are usually more accurate than a small bowel series in their evaluation of the small intestine. However, none of these tests can easily see adhesions. Instead, they identify the consequences of these adhesions such as an abrupt angling or abnormal dilation of the involved bowel. One benefit of MR enterography over the other modalities is that no radiation exposure is required for the test.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is ulcerative enterocolitis and what part of the small and large intestine is involved? Is it more extensive or serious than pancolitis?
A: The inflammation associated with ulcerative colitis typically begins in the last part of the large intestine and then spreads up the bowel to sometimes affect the entire colon; this complete or near-complete involvement of the large intestine is called pan-colitis. Ulcerative colitis does not usually impact the small intestine unless it is limited to the last few inches in a condition called backwash ileitis. More extensive inflammation of the small intestine is called enteritis and it is not seen in patients with ulcerative colitis unless they have another disorder such as an infection superimposed on their existing ulcerative colitis. On the other hand, patients with Crohn’s disease can demonstrate inflammation of both the small and large intestine and this is referred to as enterocolitis.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
September 2012
Q: I have Crohn's and the last couple of weeks I have been using the bathroom more than 15 times a day, and have hardly eaten anything. I have not lost any weight, and all my blood work has come back normal. How is that possible with the lack of food and the constant diarrhea?
A: There are a number of possibilities. Crohn’s disease may be active despite normal blood tests. Some testing may be necessary to determine if the Crohn’s disease is active. Infections can also cause diarrhea. Testing may need to be done in this regard, particularly stool tests. Medications may also cause diarrhea. Have you started any new medications? Have there been any dietary changes? It will also help your doctor to know what you bowel movement frequency was before this worsening. In summary, there are a number of possibilities that your doctor may need to consider.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I was diagnosed more than 10 years ago and have ulcerative proctitis. I find I don't know when it is appropriate to go to the emergency room. What symptoms are of concern? When should I get emergency care for?
A: Generally, proctitis should not cause symptoms that require emergency room evaluation. Small volume bleeding from the rectum and urgent bowel movements can usually be evaluated electively at your doctor’s office. If you have large amounts of bleeding, particularly if you feel lightheaded, or if severe abdominal pain occurs - this is an indication that something different from the proctitis is happening and going to the emergency room is appropriate. If you are not sure, call your doctor’s office or clinic.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: Is it okay to continue medical treatment of IBD during pregnancy?
A: Yes, most treatments can and often should be continued during pregnancy. This includes mesalamine (5-ASA), azathioprine/6MP and biologics such as infliximab, adalimumab and certolizumab. Most IBD doctors feel the risk of IBD flare during pregnancy, if medication is stopped, is worse than the risk of the medications themselves. There are, of course, some medications that should not be taken during pregnancy. Discuss your treatment with both your IBD physician and your obstetrician. They should communicate with each other if there is disagreement. There is also a discussion of pregnancy issues at CCFA.org.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2012
Q: I had a resection in February and was told I have Crohn's. I'm taking 1.875 g a day of mesalamine for remission. My question is why am I having pressure in the center of my chest? I know it is not heart related. I have taken esomeprazole magnesium and other meds with no relief. What can be the cause? Is it from the Crohn's? I am also having back pain in the middle of my back all the time.
A: You need to address this further directly with your doctor. In general, mesalamine is ineffective for the treatment of Crohn’s disease and for prevention of post-operative recurrence so better therapy may be needed. Patients should get repeat colonoscopy around 6 months after surgery to see if the Crohn’s disease has come back and increase treatment based on that. Complications from surgery such as abscess or scarring can cause back pain. Discomfort can also be from heartburn, recurrence of Crohn’s disease and bacterial overgrowth.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: What are diseases other than IBD and intestinal TB that cause chronic bowel ulcers? My 30 year old son has had ileum ulcers since 2008, which have spread to other parts of the digestive tract causing diarrhea and no appetite. He has been treated by 3 GI specialists since 2010 and has taken all medication for Crohn’s and TB, but got worse.
A: Ileal ulceration is a finding seen on endoscopic evaluation (such as colonoscopy or enteroscopy). Stool studies, biopsies of the abnormal region, and blood testing may be needed to determine the cause. There are several potential causes which include Crohn’s and tuberculosis (TB), but also include several other diseases. These diseases include, but are not limited to infections (parasites, bacteria, viruses such as cytomegalovirus in immunocompromised individuals), diseases of immune-dysregulation (eosinophilic gastroenteritis; vasculitis such as lupus and polyarteritis nodoum; vascular ischemia, and tumors (such as lymphoma)). Following up with a GI specialist to understand which diseases have been evaluated for is reasonable. A small percentage of Crohn’s patients are also non-responsive to medical therapy and may require surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there any evidence that anabolic steroids can cause and/or inflame ulcerative colitis?
A: There is no data to state whether or not anabolic steroids cause or worsen ulcerative colitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I was diagnosed with mild Crohn's (indeterminate) 10 years ago during a hospital stay. After treatment with mesalamine (on two different occasions), the off-on again symptoms lessened within about 2 years. I'm no longer taking meds, but have constant problems with bowel consistency. Could it be I was misdiagnosed? Without currently experiencing symptoms, can any test definitively diagnose IBD?
A: A diagnosis of IBD can be made definitively, but patients may not have all the findings at the time of presentation to make a definitive diagnosis. Findings on testing may evolve over time and may require repeat testing to make a diagnosis of IBD. The findings on endoscopic evaluation (such as colonoscopy/endoscopy) along with the findings on biopsies are the gold standard method for diagnosis. When it is difficult to know whether someone has Crohn’s disease or ulcerative colitis, there are also blood tests that can help differentiate the diseases. Clinical remission does not always equal endoscopic remission, so it may be worthwhile repeating testing if the diagnosis was not certain from the start. Additionally, having Crohn’s or ulcerative colitis for more than 8-10 years may increase the risk for colon cancer and colonoscopy (with biopsies) is the recommended screening test.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: My primary care doctor has recommended that I use a hormonal form of birth control--either a low-dose estrogen pill or the levonorgestrel-releasing intrauterine device (IUD). This form of IUD is not recommended for people with suppressed immune systems (I am on azathioprine and infliximab, and tapering off of prednisone). However, a recent CDC publication gave the IUD a safer rating than the pill for women with IBD (http://1.usa.gov/bQnOfb). Which form of birth control is safer for me to take?
A: The difference noted by the CDC MMWR publication refers to the risk of blood clots with the use of contraceptives in inflammatory bowel disease patients. Moderate to severely active inflammatory bowel disease increases the risk for developing blood clots. Contraceptives with higher hormonal levels (in the pill, patch, or ring) also are associated with an increase risk for blood clots. In theory, combining oral contraceptives and moderate-severe inflammatory bowel disease may increase the risk even more for developing blood clots. There is no published study as of yet that answers this question. If your disease is not very active, then a pill still may be a reasonable option. You would still need to discuss with your primary care provider or gynecologist if there are other reasons specific to your medical history that would help guide which type of contraceptive to use.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2012
Q: Why do I have so many body aches and pain that often times will not permit me to walk or stand straight up? I seem to be falling a lot as well.
A: There are a number of things that could be going on to cause your symptoms and you should discuss this with your doctor. Sometimes IBD can be associated with arthritis and this would be at the top of my concerns. If that is the case your doctor may want to send you to see an arthritis specialist and/or choose medications for your IBD that will also help treat arthritis. Arthritis associated with IBD (called spondyloarthropathy) can affect various joints, including the back and pelvis joints and/or the large or small joints of your extremities.
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Experts 2010-2011, MD, etc.
n/a
March 2012
Q: I am currently taking mesalamine for my Crohn's. My husband and I decided to have children and I am currently 5 weeks pregnant. My gastroenterologist told me that it was safe to take my meds while pregnant but when I met with my gynecologist she said that it is not considered safe. What do research studies on this find?
A: In general, mesalamines are considered safe during pregnancy. With that said, olsalazine and asacol contain dibutyl pthalatae (DBP) in the coating. Neither of these medications has been associated with birth defects, but DBP has been associated with congenital anomalies in animals. With that said, it is even more important to consider the effects of a flare if these medications are stopped. Active disease during pregnancy can increase the risks of pre-term delivery and low birth weight of the infant. It may also impair the ability of the mother to care for the infant once it is born. Plus even stronger medicines may be required to get mom back under control if she flares.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2012
Q: My 16 year old daughter was diagnosed 2.5 years ago with UC. When treating a sore throat/ear infection what antibiotics are safe as to not upset the gut?
A: All antibiotics can upset the gastrointestinal system, in part by changing the gut’s flora, the organisms that reside in the gut. For this reason, antibiotics should be used judiciously, such as when a treating physician is reasonably certain that there is a bacterial infection, as opposed to a viral infection.
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Experts 2010-2011, MD, etc.
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February 2012
Q: Is IBD something you're born with or can you develop it later in life? I recently went to the hospital for severe abdominal pain and diarrhea that lasted 3 weeks. I was dehydrated, but the pain and cramps have persisted for the last 3 months. It bothers me more at night. The only symptom I haven't had is blood in my stool. Should I talk to a GI?
A: Crohn’s disease and ulcerative colitis (collectively IBD) are acquired in life, though their development is under the influence of genetic, as well as environmental factors. Most patients who develop IBD during their lives do so in their late childhood and early adult years, though it may become apparent and become diagnosed any time during life. With your symptoms, I think it would be a good time to schedule an appointment with a gastroenterologist. Your symptoms may or may not be a function of Crohn’s disease or ulcerative colitis.
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December 2011
Q: I was diagnosed with ulcerative colitis in 1993 and have a family history of colon cancer. How often should I be getting a colonoscopy? How many years does colorectal cancer take to advance past the early more treatable stages that can be caught in a colonoscopy?
A: The risk of colon cancer in ulcerative colitis depends on multiple factors. Those with disease of the entire colon have a greater risk than those with disease limited to their left colon or rectum. The risk for cancer starts 10 years after the diagnosis, and we think that active inflammation also plays a role in increased risk. A family history of cancer would include first degree relatives under the age of 60 or multiple second degree relatives under the age of 50. You should speak with your gastroenterologist about your specific risk factors in regards to how often you personally need to have a colonoscopy. We believe that the cancer in ulcerative colitis is more aggressive, i.e. grows faster, than cancer that occurs outside the setting of ulcerative colitis, so having colonoscopy in the recommended time frame with attention to a good prep is important.
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December 2011
Q: Is it common to have dry eyes and/or roscia if you have Crohn’s disease?
A: There are several different other autoimmune conditions that one can get if you have Crohn’s disease. Dry eyes and rosacea are two of them. But these can also be side effects of medications.
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December 2011
Q: I’ve had proctosigmoiditis for 25 years and am on 4800mg of mesalamine. Six weeks ago I started having small amounts of mucus and blood in my morning bowel movements. Are small amounts of blood common?
A: Bleeding is a common symptom of active proctosigmoiditis but can also be from hemorrhoids or fissures. If you don’t have other symptoms of active disease, it would be important that that you have the source of the bleeding checked out as it is unlikely the proctosigmoiditis.
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December 2011
Q: I have had a pouch since 1997 because of UC surgery. For the last 3 years my pouchitis has become so chronic that we have tried all antibiotics (resistant now), probiotics and budesonide and now I am on prednisone. It seems that things continue to worsen. What can I do to retain my pouch?
A: It might be that the chronic pouchitis is really Crohn’s disease since you are requiring prednisone to treat it. You should talk with your health care provider about this possibility, as treatment for Crohn’s disease may restore the health of your pouch.
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December 2011
Q: What are strictures and obstructions and how do you know if you have one? Will they always be there until surgery is done or can they heal some with medicine and/or diet? Can you get tested for it and who should?
A: A stricture is a narrowing of the intestine that may or may not cause any symptoms. Strictures can be narrowing from active inflammation (sort of like when your eye can swell shut from pink eye) or from scar tissue. Narrowings can cause obstruction if food or stool is unable to freely pass through this point. Symptoms would include pain, nausea, vomiting and abdominal distention. If in the colon, a stricture can cause constipation. Treatment depends on if the stricture is inflammation or scar tissue, as there are no medications that treat built up scar tissue. Testing for strictures include x-rays and sometimes colonoscopy.
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December 2011
Q: I had a colonoscopy several months ago and had a severe infection in my colon and was treated for this. At my follow-up, I had to be hospitalized due to severe pain and had a CT done and was told had Crohn's. My GI doc still has doubts if it is Crohn's. What else could it be? I had ulcers and inflammation in colon/small intestine.
A: There are many things that can cause inflammation and ulcers in the colon, including infection, medications, Crohn’s disease, certain kinds of cancers, and damage from lack of blood flow. Biopsies from the colon often can differentiate between these different causes. If there is doubt, having more than one expert examine the biopsies can be helpful.
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November 2011
Q: I had a total colorectal removal with a j-pouch formation about 10 years ago. I had problems with pouchitis frequently afterward and continue to have chronic abdominal pain, cramping, and diarrhea. Can someone still have UC after having their colon removed?
A: After total proctocolectomy and ileal pouch-anal anastomosis patients no longer have ulcerative colitis. At surgery all of the colon is removed, except for 1-2 cm of the very end of the rectum near the anus. Although patients no longer have ulcerative colitis, they can continue to have a variety of symptoms that can be similar to ulcerative colitis symptoms, including urgency, frequency, diarrhea, cramping, and rectal bleeding. These symptoms may be due to inflammation in the ileo-anal pouch (pouchitis), inflammation of the remaining 1-2 cm of rectum (cuffitis), Crohn’s disease of the pouch, or irritable pouch syndrome. In addition, scar tissue from surgery (adhesions) or a slow leak from the pouch, with subsequent infection and inflammation, can cause symptoms of abdominal pain and loose stool. A combination of lab tests, radiologic imaging (CAT scan or MRI), and an endoscopy of the pouch (pouchocopy) can help distinguish between these different possibilities.
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November 2011
Q: Should I have a colonoscopy immediately after a severe colitis flare-up or should I wait at least a week or more?
A: It is usually best to wait a couple of weeks after a severe flare-up before doing a colonoscopy, since occasionally the preparation and procedure can worsen the IBD. However, in some situations it is important to do the procedure even during a severe flare-up, so the decision regarding timing of a colonoscopy should be discussed with one’s doctor.
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November 2011
Q: I have had Crohn’s for almost 36 years and had ileostomy surgery last January. I have a hernia in my stoma—is that serious?
A: Stomal hernias are common and are not necessarily serious, especially when small. However, larger stomal hernias may be uncomfortable and can interfere with normal daily activities and normal stoma function. These larger stomal hernias often need surgical repair.
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November 2011
Q: I am currently in a mild flare up and I’m having many problems with joints (big toe, 2nd and 3rd toe). Is there something I can do to lessen the inflammation?
A: The best way to manage the joint inflammation associated with disease flares is to treat the flare itself, thereby decreasing the overall inflammation. However, since improvement in a flare is not always instant, some physicians will treat the pain associated with joint inflammation by adding medications specifically for pain and/or joint inflammation, though it is best to avoid the common over-the-counter anti-inflammatory medications like aspirin, ibuprofen, and naproxen. Additionally, pain focused specifically in the toes, feet, or ankles may be due to another joint disorder like gout or pseudogout, so it is always best to discuss new onset joint pain with one’s physician.
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November 2011
Q: Is suddenly developed eczema after starting a new medication a common side effect?
A: The new development of eczema or any new skin rash is not common with most medications and should be discussed with one’s physician.
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September 2011
Q: My son was diagnosed with erythema nodosum. He also has ulcerative colitis. How, if at all, is this related?
A: Patients with Crohn’s disease or ulcerative colitis may develop diseases outside the gastrointestinal tract. These diseases—also called extraintestinal manifestations (EIMs) -- are disorders of the immune system. EIMs usually refer to skin disorders (erythema nodosum and pyodermagangrenosum), eye disorders (uveitis and episcleritis), liver disorders (primary sclerosing cholangitis), and joint disorders (ankylosing spondylitis and certain types of arthritis). Sometimes mouth sores and fevers are included as EIMs. EIMs may or may not mirror IBD activity. EIMs occur in 6-40% of patients, and vary in frequency in patients with Crohn’s disease and ulcerative colitis, and men and women.
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September 2011
Q: I had an ileostomy 6 months ago after 1 bout of suspected colitis and a perforated bowel. Now my doctors are unsure if it was ulcerative colitis or Crohn's. Why can they not tell which it was?
A: Usually Crohn’s disease and ulcerative colitis have distinctive features. Crohn’s disease can involve any part of the intestinal tract from the mouth to the anus, can have areas of intestinal inflammation that are next to normal areas (called “skip” lesions), and inflammation can result in perforation of the intestine. Some Crohn’s patients, but not all, have a unique kind of inflammation called granulomas. Granulomas are seen in biopsy specimens when looked at under the microscope. Ulcerative colitis involves only the colon, and only the very superficial layers of the colon are inflamed, making perforation less common. In some cases, patients have features of both, making it difficult to make a firm diagnosis. Uncertainty arises in patients with inflammation only in their colon and without granulomas in their biopsy specimens. Disease behavior can also be similar: while intestinal perforation is more common in Crohn’s disease, it can also be seen in patients with ulcerative colitis, especially those with very severe inflammation. Another difficult situation is a patient who undergoes a colectomy for ulcerative colitis and then develops complications, such as abscess or fistula. The physician then must consider whether the complication was because of the surgery or because of underlying Crohn’s disease. Sometimes patients and their physicians may need to observe disease patterns for months to years to make a firm diagnosis. It can still be difficult to firmly distinguish Crohn’s disease from ulcerative colitis. Indeterminate colitis is the term used to describe patients in this situation.
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July 2011
Q: What are the chances of proctitis changing to colitis? I have pain in my upper colon now and believe it is colitis. Is my pain a symptom of proctitis or could it have grown to colitis? Also, I have been bleeding for 6 wks, is that abnormal? I am currently taking mesalamine with a rectal enema and cannot go to the bathroom and do not have diarrhea.
A: Symptoms of colitis include pain, bloody stools, and frequent loose stools (including night time stools). While ulcerative colitis can affect the entire colon (pancolitis), it may also be limited to segments of the colon, including the rectum. When colitis affects the rectum, or the very end of the colon, it is called proctitis. Some people have only proctitis, and other people may have other areas of their colon affected with inflammation. Patients with proctitis (with or without other areas of colon involvement) will often have a sense of stool urgency, frequency, rectal bleeding, and often pain. Rectal bleeding for greater than six weeks is not normal, and may reflect inadequately treated proctitis or colitis. Your gastroenterologist will want to discuss these symptoms with you and potentially change your medication. Additionally, change in your stooling patterns, particularly an inability to stool, should be investigated to exclude the development of colon cancer. Your doctor will help you determine the extent of your colitis and if there are any areas in your colon that are worrisome for cancer.
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July 2011
Q: Is swelling in the throat or difficulty swallowing Crohn’s related? I’ve had trouble taking pills and with getting things stuck in my throat for the past year, but I didn't think it was related so I did not mention it to my GI doctor. It is getting worse though and I wonder how concerned I should be and what could help the situation.
A: Difficulty swallowing (dysphagia) is never normal, and in patients with Crohn’s disease, this symptom should be promptly evaluated by your gastroenterologist. There are many causes of dysphagia, including infection, gastroesophageal reflux disease, inflammation of the mouth or esophagus, or development of an esophageal stricture. You should discuss your symptoms with your doctor and your health care team. They may choose to perform a diagnostic x-ray study or perform esophagogastroduodenoscopy (EGD, upper endoscopy) to look at and biopsy any unusual areas in your esophagus.
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July 2011
Q: What damage is caused from a c diff infection with Crohn's disease?
A: Clostridrium difficle infection (CDI) is one of the major causes of antibiotic-associated diarrhea and may represent one of the most common hospital-acquired infections around the world. Patients with inflammatory bowel diseases (IBD) are particularly prone to developing CDI given the higher rates of clinic visits, hospitalizations, antibiotics, and procedures performed. Additionally, some patients with IBD may be at risk for CDI even without antibiotic exposure. Symptoms may mimic or exacerbate an acute flare of either Crohn’s disease or ulcerative colitis, including fever, abdominal pain, nausea, and diarrhea. Recognition of CDI in patients with Crohn’s disease and ulcerative colitis is important. Diagnosis is made via stool sampling. Once treated, CDI should not be expected to cause permanent damage in patients with Crohn’s disease. Treatment is generally with very specific antibiotics, and most patients have a prompt and complete response. However, progressive CDI can lead to severe colitis and require emergent surgical intervention.
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July 2011
Q: A question about the NOD2 gene and apparent increase in Crohn’s cases. Considering that the incidence is higher in urban areas, is transmissibility possible? If a normally beneficial bacterium’s cell wall receptors have changed and it is transmitted to someone with an abnormal NOD2 gene could it initiate Crohn’s while someone with a normal NOD2 gene would be unaffected?
A: The answer to the transmissibility question remains unknown, but the potential answers are provocative. The precise mechanism that causes Crohn’s disease remains imperfectly understood. However, a common characteristic of IBD is an increased immunological response that perpetuates an inflammatory reaction in the gastrointestinal tract. NOD2 is a gene that regulates gastrointestinal immune and inflammatory response to gut bacteria. Some patients with Crohn’s disease have NOD2 gene mutations; however, not all patients have NOD2 mutations, suggesting that it is a susceptibility factor. Therefore, in susceptible individuals with an abnormal NOD2 gene, it is possible that an otherwise normally beneficial bacterium or its mutation, its cell wall or byproducts could initiate an abnormal immunological cascade triggering the development of Crohn’s disease. This same bacterium may not invoke an abnormal immunological response in a normal individual.
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July 2011
Q: My partner has ulcerative colitis – is it safe to have anal intercourse when there are no active disease symptoms?
A: Sexual activity is a normal and healthy component of a mature relationship. In the absence of active symptoms of ulcerative colitis, anal intercourse alone should not be expected to increase symptoms. Anal intercourse should be avoided if your partner has active proctitis or anal fissure, as the friction that may occur can aggravate these conditions. Importantly, if your partner develops any symptoms following anal intercourse, this should be discussed promptly with your physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2011
Q: I am considering moving back to the northern US from the southwest, which is where I was diagnosed (indeterminate colitis). It's common to hear that IBD is more prevalent in northern climates, but that's as much as any source ever says about it. Where does this statement come from and how should I interpret it? Are more people diagnosed there? Do people there flare more often? I am looking for insight to help me decide if moving north is a health risk. I lived there before I was diagnosed.
A: Studies looking at large groups of people have found that diagnosing people with inflammatory bowel disease is more common in northern parts of the world (North America, England, Northern Europe) and less common in other areas of the world like Asia, Africa, and Latin America. Some of this may be complicated by the fact that infectious causes for colitis may mask the diagnoses of IBD in the latter areas. Other studies have found this similar “gradient” of diagnosis within northern countries including the USA and France. However, with the more we know about IBD and with more awareness, these “less common” areas are increasingly diagnosing IBD as well. Of note, these studies are all looking at “prevalence” (how common) and “incidence” (new diagnoses) of IBD and not at how the disease is affected by moving from one climate to another. This latter study is much more difficult to do and less is known. In regards to how your colitis will do depending on where you live (which is really what you want to know), there is no clear data that moving to the north will lead to more flares than living in the south. While we know there are potential triggers for flare-ups (for example, infections, smoking, non-steroidal anti-inflammatory use), no study has clearly found that moving from one climate to another makes an impact on the course of your colitis.
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June 2011
Q: Is it possible to consider getting pregnant if you have a permanent ostomy?
A: Yes, it is. There is some potential for reduced ability to conceive after having had surgery, however, it definitely an option. Be sure to discuss the possibility with your OB/GYN and gastroenterologist prior to getting pregnant.
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Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2011
Q: Will Crohn’s disease or ulcerative colitis ever go away or heal itself?
A: Both Crohn’s disease and ulcerative colitis are chronic inflammatory illnesses that we consider lifelong illnesses. In some cases, however, there is medication-induced healing that is quite durable and spontaneous remission that can be quite durable. Nevertheless, patients are considered to have a lifelong possibility of relapse. This is particularly true in Crohn’s disease when there is quite a high rate of microscopic recurrence after surgery, although much research is being invested into designing ways to avoid such a post-operative recurrence. Surgical treatment of ulcerative colitis results in “loss” of the disease with either the formation of a J-pouch, where a segment of small intestine is attached to the anal sphincters so that patients can still defecate in the usual fashion, or the creation of a permanent ileostomy, in which the small intestine is brought out the abdominal wall and waste is captured by an appliance worn on the abdominal wall.
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May 2011
Q: I was diagnosed in 09 with UC and have not been able to get into remission. Recently I've had severe rectal pain--difficult to change positions, move, and my bowel movements are more painful than ever. It's been 2 weeks. Curiously, my bowel movement frequency had decreased before onset of this pain. A pelvic CT scan was done in ER and visual inspection, nothing found. What could be causing this extreme rectal pain?
A: Rectal pain associated with relative constipation is usually a sign of an anal fissure or small fistula. Visual inspection is usually not sufficient, and they are quite small so will not be seen on CT. An exam by a colorectal surgeon is needed, they can use a special short scope to assess the area.
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May 2011
Q: What happens when a flare up occurs? What should I look out for? My understanding is abdominal pain, diarrhea, and bloody stools. How long do flare ups last?
A: A “flare up” refers to the occurrence of symptoms after a period of no symptoms (remission). Symptoms of a flare up are dependent on which disease you have (UC or Crohn’s disease) and those symptoms you experienced when you got diagnosed. Any persistent change in your bowel habits, blood or pain should trigger a discussion with your doctor as to whether your symptoms are indicative of disease recurrence. The length of a flare up will depend on how long you have symptoms before treatment, the possible reason for the flare, and how bad the disease gets before treatment.
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April 2011
Q: My daughter had a complete colectomy after being diagnosed for UC in 2008. She is doing well, but seems to be prone to colds and flu. She received a flu shot this year. She takes no medication. Are UC patients more prone to colds and flu?
A: Ulcerative colitis patients are not more prone to infections such as Influenza or other upper respiratory illnesses. The flu shot is always a good idea. While not relevant to your daughter’s care, some of the medications that we use often in the treatment of ulcerative colitis can result in an increased risk of infections, however, particularly corticosteroids like prednisone, immunomodulators like 6-merpcaptopurine and azathioprine, and anti-TNF’s like infliximab.
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March 2011
Q: How can Crohn's disease in the stomach be conclusively diagnosed? Could inflammation in the stomach diagnosed as Crohn’s cause severe pain? What is an effective treatment for Crohn’s found in the stomach?
A: Studies have shown that approximately 0.5% to 4% of all patients with Crohn's disease will have involvement of their stomach and/or the duodenum (the first part of the small intestine that comes right after the stomach). Inflammation related to Crohn’s disease can be seen on x-ray studies, such as an upper GI series or through an upper endoscopy with biopsies. But, remember that inflammation can be from other causes, including ulcer disease and/or H. Pylori infection. Most patients with gastroduodenal Crohn's disease are asymptomatic, but some people will experience epigastric pain, as well as nausea, vomiting, and weight loss. Treatment for gastroduodenal Crohn’s disease generally includes acid suppression with a proton pump inhibitor. Other medicines can also help, including steroids, 6-MP, and azathioprine. 5-ASA medications are generally not helpful for gastroduodenal Crohn’s disease and the role of biologic therapy remains unclear. In severe cases where a stricture develops and is causing obstruction, this is treated with either endoscopic dilatation or surgery.
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March 2011
Q: I am experiencing lower back pain that stretches across my buttocks and up to waist. Is this part of Crohn's?
A: This kind of low back pain can occur in some patients with Crohn’s disease and will be found to be related to a form of arthritis called sacroiliitis. This condition may be able to be diagnosed by imaging studies, such as a CT scan or MRI. Of course, remember that low back pain is also very common in many people without Crohn’s.
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March 2011
Q: I was diagnosed 14 years ago (at age 22) with Crohn’s disease after a serious case of food poisoning. I have not taken medication for CD in 14 years and have had no disease symptoms since. My colonoscopy over the years show no inflammation. Is it possible that I had a misdiagnosis? Are there new test that should be performed to rule out a misdiagnosis?
A: If you have no symptoms and no other signs of inflammation in the intestine, then it is very likely that you do not have Crohn’s disease. Perhaps there was some transient inflammation due to the food poisoning. There is no need to do any additional tests if you have no symptoms.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2011
Q: I was diagnosed at 76 with UC. I have tried every medication that has not worked. I’m 79 now and my doctor wants to try a biologic. Are biologic therapies riskier for older patients than for younger patients?
A: The biologic therapies all result in a weakened immune system and therefore an increased risk of infections. These drugs can be used safely in some elderly patients, but we generally use them more cautiously because of increased concern for the development of a serious infection.
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Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2011
Q: I believe the trigger for the onset of my 15 year old son's Crohn's Disease was topical acne medication such as adapalene or clindamycin. Drug warnings indicate that this is a possible cause of Crohn's, but his doctor doesn’t seem to agree. Are doctors tracking the use of acne meds with young Crohn's patients to see if there is a trend?
A: Some recent studies have suggested that an acne medicine taken by mouth was associated with development of Crohn’s Disease. However, other large studies have not shown this. Doctors are tracking the use of acne medications to see if there is a trend.
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February 2011
Q: What is it called if UC is in the cecum?
A: It is still called ulcerative colitis – the cecum is the first part of the colon, where the small intestine, the ileum, empties into the colon.
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February 2011
Q: My daughter just had a terminated colonoscopy due to having friable mucosa throughout her procedure. Is this related to colitis?
A: Yes – friable mucosa means the lining of the colon bleeds easily with contact from the colonoscope. This is because of the colitis.
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February 2011
Q: I started the testing process that resulted in my Crohn's diagnosis in November. I went to my GYN in late Oct. with some complaints (discharge - not yeast, pain with intercourse) and am wondering how to tell if it is related to Crohn's or just coincidence?
A: Pain with intercourse could be due to Crohn’s disease. You will want to work with your GI doctor and gyn to determine whether inflammation or a complication of Crohn’s is causing this, and treatments to help.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2011
Q: Can IBD cause bloating in the stomach?
A: Bloating is a very common symptom for patients with IBD. Bloating might be related to the disease, especially if the disease involves the stomach or small intestine. However, bloating might also be related to IBD medications and/or diet. Some foods are very common causes of bloating (and gas), including soda pop, onions and garlic, beans, cabbage, broccoli, cauliflower, and milk products (including ice cream). If the bloating only occurs after eating, and if it is associated with severe abdominal cramps and/or severe nausea and vomiting, it could be a sign of a possible small bowel narrowing in patients with Crohn’s disease.
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January 2011
Q: Before I was diagnosed with Crohn's I had some swelling in my right wrist. I have been on a biologic now for 4 months or so and the doctor told me my Crohn's is in remission. I still have the swelling in my wrist though. I've tried anti-inflammatories and tylenol, but no luck. Is this something that may never go away? My wrist has been swollen for almost 8 months now.
A: IBD can cause a variety of so-called extraintestinal symptoms, including joint swelling and pain. In general, swelling, and often pain and stiffness, of the joints in the arms and legs parallels the activity of the bowel disease. So usually, if the bowel disease gets better with medical treatment the joint disease improves as well. If your joint is still swollen, you should be evaluated by a joint specialist, rheumatologist or orthopedic surgeon, to be certain there is no other problem with the joint.
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December 2010
Q: How does a doctor determine whether a patient has Crohn’s or UC if the disease is located only in the large intestine?
A: This can be difficult. Ten percent of the time we cannot tell the difference and thus diagnose the patient with “indeterminant colitis”. Sometimes there are clues that can go unnoticed, like what appears to be “hemorrhoids” but are really skin tags and signal Crohn’s disease. There are blood tests that can help but these again can be confusing and do not “clinch” the diagnosis.
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December 2010
Q: Is it possible for Crohn's to only manifest in areas of the small intestine that can't be seen by a scope? If so, what is the most effective way to diagnose this and do these alternate methods adequately identify the Crohn's when the symptoms are only mild to moderate in severity?
A: Most patients with Crohn’s disease of the small intestine have signs of the disease in the very last portion of the organ, which can be seen with a scope. CT scans and MRIs are now very sensitive and can pick up abnormalities that previously were missed. As well, video capsule studies (swallowing the pill camera) shows us the entire small intestine. If Crohn’s is present in the middle of the small intestine, there are ways to find it.
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December 2010
Q: How often is ulcerative colitis misdiagnosed?
A: This is a very difficult question to answer as we do not know how many patients fit this category. Ulcerative colitis can be mimicked by many other conditions, and thus it is a combination of tests that lead to the correct diagnosis. An important person in this diagnosis process is the pathologist who is reading the tissue biopsies to see the changes necessary to make the diagnosis of ulcerative colitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2010
Q: Two decades now living with Crohn's and being treated with Remicade for years now as no other meds worked in the past. Currently manageable. How often are colonoscopies recommended in my situation? My MD suggests every two years is standard practice, and I would like another opinion on this as I don't want them this often.
A: After having disease for 10 years we recommend surveillance colonoscopies to look for pre-cancerous changes every 1-2 years depending on your other risk factors for cancer. At this time there is no other suitable way to detect these precancerous changes without doing a colonoscopy. Colonoscopies are never fun, but discussing your reluctance to having them can sometimes lead to manageable solutions for your concerns and make the experience less unpleasant.
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November 2010
Q: Why does it take so long to get a clear diagnosis of Crohn’s disease or ulcerative colitis?
A: Many of the symptoms that can lead a patient to a doctor that are from Crohn’s disease or ulcerative colitis can come from a number of different illnesses. Diarrhea can come from infections, medication side effects, deficiencies in numerous processes of digestion and absorption, Crohn’s disease, and many, many other illnesses. The same is true of abdominal pain, weight loss, growth and developmental delays, and so many more of what we call the “presenting symptoms” of Crohn’s disease or ulcerative colitis. To arrive at the diagnosis, doctors must first think of the diagnosis, exclude the other possibilities, and perform a diagnostic test that confirms the diagnosis. Usually, that requires and invasive test, such as a colonoscopy, or a test requiring exposure to X-rays, like a small bowel series or a specialized kind of CT scan called a CT enterography, a kind of X-ray test with specialized computer enhancement. Given a relative hesitation in performing these tests due to patient inconvenience and due to the overlap with other illnesses, it can often take some time to get a clear diagnosis of either Crohn’s disease or ulcerative colitis.
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February 2023
Q: · My son was diagnosed with a Crohn's flare. He started Remicade and methotrexate & having his 3rd infusion next week. More prednisone was also prescribed since his symptoms haven't improved (his doctor said the symptoms might also be side effects of the Remicade). He sleeps all the time, can't work, and is depressed. My son believes the Remicade isn't working and should try Humira. Do you have any recommendations for him?
A: Going through a flare is physically and emotionally difficult. Also, symptoms associated with the flare can worsen or contribute to symptoms of depression. It is recommended that all symptoms be discussed with his IBD specialist. While there may be adjustments in his medication regimen, he may also benefit from a consultation with a GI mental health provider to aid with managing the complexities of IBD. They will assess for severity of mood symptoms and help create a treatment plan to aid in improving mood, fatigue and overall functioning. To locate a mental health provider, encourage your son to speak with his IBD provider as that provider may have someone on the team or have a local resource. He can also use this directory: www.romeGIpsych.org.
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Megan Riehl, PsyD
Assistant Professor of Medicine
January 2023
Q: I am wondering if there are ways to help reduce my stress levels related to having a chronic illness in the workplace. Should I tell my supervisor that I have IBD? I feel overwhelmed at times at work and feel like I am not able to complete the task needed on time. I am unsure how to cope.
A: Stress can have a significant impact on our mind and body. Work is one aspect of life that can contribute to stress for various reasons. In people with chronic GI conditions stressors related to work can come from the actual job demands, while also GI-specific stressors such as physical symptoms, access to bathrooms, navigating medical appointments and more. If aspects of IBD are impacting you at work, it is likely time to identify who at work can assist with navigating your rights as someone in the work force with a chronic illness. Depending on your needs and work environment, you may be able to provide very basic information about your needs and the impact of your health on your work. You can share what you feel comfortable sharing. You may benefit from working with your medical provider and employer to complete FMLA (Family and Medical Leave Act) or ADA (Americans with Disabilities Act) paperwork to receive reasonable accommodations. Having these accommodations in place can assist with stress management by reducing some of the burden if you need a day off for the management of your health. You can find important information about your rights as a person with IBD here: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/employment-and-inflammatory.pdf
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Megan Riehl, PsyD
Assistant Professor of Medicine
October 2022
Q: My son was diagnosed with Crohn's at the end of March 2022. He was put on Humira, developed antibodies and was switched to Remicade. He received his 3rd induction dose of Remicade on Sept 8 (his levels look good with no antibodies, and C-reactive is back to normal). He is still having diarrhea 1-2 times per day with some cramping (down from 6-7/day early summer). When should we expect these symptoms to improve?
A: Thank you for your question. I am glad that your son is feeling better, but I you are correct, true clinical remission (absence of symptoms) is the first goal of therapy. Sounds like he is responding to the therapy both by lab data (normal CRP) and symptom improvement. I am not sure how long ago he received the third dose but, he should stay at least as good, if not further improve by dose four. This is important since that is the first “maintenance” dose and is likely scheduled eight weeks after the third. Likely, your son’s gastroenterologist will be checking an infliximab level then to assure the dose is optimized for good disease control going forward. Ultimately, the next goal of treatment is to assure healing of the lining (mucosa) of the bowel. This can first be measured with a stool test for inflammation (calprotectin) and later, by repeating imaging with an MR enterograpy (MRE) or repeat colonoscopy. Studies have shown that healing of the mucosa is associated with our best long-term outcomes, so it is very worthwhile to look for this. Also, if symptoms persist or recur, such follow up testing would help clarify whether active Crohn’s disease is still contributing. Hope he is feeling back to himself soon!
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
August 2022
Q: My 14 year old has been in "remission" for about 1 year now and still receives the remicade infusions every 8 weeks, but with this new school year she is now experiencing sort of panic attacks/anxiety. I've made her appointment with pediatrician but looking to see if this is common in youth with an IBD?
A: There can be many anxiety provoking things that happen around back to school time for kids (schedules, lockers, new friends, school changes, etc). So, first it is important to normalize this for kids with and without chronic illness. For those with IBD, there may be some additional stressors that I would encourage you to explore with your daughter. Dr. Brad Jerson is a pediatric GI psychologist who just published a great article recently about school considerations that can impact those with GI conditions (https://www.healio.com/news/gastroenterology/20220823/back-to-school-with-digestive-disorders-parentschool-partnership-key-to-patient-support). Some of the factors to consider include bathroom access, dietary sensitivities, navigating your health with your peers and more. All of this can progress from worry to anxiety to panic if unaddressed. It is a great idea to chat with your pediatrician, and consider talking with a GI psychologist (if you are near one) or a general mental health provider who can assist with anxiety management.
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Megan Riehl, PsyD
Assistant Professor of Medicine
August 2022
Q: I have a 19 year old son who is in college, he is very nervous about sharing a room with someone who doesn’t understand his illness. He is not always vocal about having IBD and does his best to manage without many people knowing when he is in pain, etc. How would you recommend he handle the situation with having a roommate and living with IBD? I feel like he may be having anxiety related to this.
A: I would say that the anxiety of having a roommate for the first time is common for most college students. Normalizing this for him may be a good place to start. It would them be helpful to work on language that he can become more comfortable with around talking to his roommate (and friends) to help them understand how IBD can impact his life. While discussing bathroom issues can feel uncomfortable, once he gets the conversation about his needs out there, it will likely help to reduce the anxiety. He doesn’t have to be graphic or overly detailed but help give some context to why he may spend some extra time in the bathroom, need to use the bathroom urgently, need time for rest or eat differently. It typically takes a lot more energy to avoid these types of conversations over time than it will to have the initial conversations and hopefully have them be well received. He may also see that his roommate can be supportive and assist him when and if he needs that.
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Megan Riehl, PsyD
Assistant Professor of Medicine
August 2022
Q: Hello. I am a mom of a teen daughter who has been diagnosed for just shy of a year. She is often times staying in her room, avoiding friendships, and even refusing to eat at times. I am worried she might be depressed related to having a chronic illness. Are there things I can do to help as her mom? Ways to teach her to cope with her illness? Anything would help!
A: Thank you for being curious and aware of these changes in your daughter. A new diagnosis of a chronic disease can lead to many life changes, new normal and at times, fear about the future. Watching for signs of anxiety and depression are important. It does sound like your daughter is experiencing some symptoms of depression. I would recommend speaking with her gastroenterologist about whether there is a GI psychologist or GI-specialized mental health professional for her to consult with. If not, you can check www.ROMEGIPsych.org or look for a mental health provider who specializes in working with teens, chronic illness, depression and anxiety via www.psychologytoday.com or another via the Crohn’s and Colitis Foundation resources.
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Megan Riehl, PsyD
Assistant Professor of Medicine
June 2022
Q: My 12 year old son is now facing a ileo colectomy. What can we expect afterwards? How can I help to make the procedure and healing time go well?
A: Surgical intervention is a big step at any age so congratulations on being proactive in helping him (and therefore you!) through this. First and foremost, these are great questions for you to ask your surgeon and their team. I assume you are referring to an ileocecectomy (removal of a portion of the last part of the small intestine along with the first part of colon = cecum). This is the most common surgery performed on those with Crohn’s disease. Accordingly, your son’s team likely has significant experience with this and can assist answering your questions. The hospital may also have a Child Life team and other supports—feel free to use them to get yourself educated and your son educated at an age appropriate level. There may also be other pediatric patients and their families who have been through the same experience who have volunteered to speak to others and share experiences with the Power of Two program. Feel free to take advantage of all such resources. Most commonly, this surgery is now performed laparoscopically (minimally invasive surgery) which allows early hospital discharge and much less post-operative pain than in the past. The surgical team will lay out a plan for return to full activity which will slowly occur over a few weeks. Also, keep in mind that while the surgery will remove the bowel already damaged by the Crohn’s, it does not cure the condition and there will need to be a plan to prevent disease recurrence after the surgery. So be sure to speak with your medical team so that you are fully aware of the post-operative plan to prevent disease recurrence. Also, in addition to using medical therapy to prevent recurrence, it is recommended that a colonoscopy be performed within 6 months of the surgery to assure that the plan is effective and that Crohn’s inflammation has not recurred. Best wishes for a rapid and full recovery!
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
June 2022
Q: My son has been on Remicade since 2013, he has Crohn’s. He has been in remission. He has had issues with acne since he started the medication. Since switching to generic we noticed he began to get cystic acne. He had to have them removed. He is 26 yrs old and is now dealing with all these cysts. Frequent visits to dermatologist, having to get 4 steroid shot in cyst. Do you think this is a side effect from the medication?
A: Thank you for the excellent question. It looks like he started infliximab around age 15 years which is a very common age for acne so this should not be seen as a surprise. However, your concern that this has persisted to this degree is noted. Traditionally, the main medication associated with acne is steroids but it looks like his medical team has done a great job staying away from that. Whether he is receiving originator infliximab (Remicade) or a biosimilar should not make a difference here. Dermatologic issues can be seen with anti-TNF therapy and while acne is not the most common, it is a consideration here. Some of the newer biologics approved for Crohn’s affect the skin to a much less degree and he should be encouraged to have a discussion about this with his team. Additionally, since you discuss this as cystic with the need for removal from his buttock, he should at least confirm that this is truly acne and not a condition called Hidradenitis Suppurativa (HS) which is sometimes associated with IBD (especially in cigarette smokers!) and would require a very different approach.
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My daughter has taken Humira and is now Stelera for her Crohn’s. It seemed after her injection she develops a localized reaction at the site that last 3days. She takes Zyrtec 3 days prior and 3 days after. She takes Benadryl and Tylenol pre med the injection. She has no antibodies to the drugs and it seems it may be from the filler in the injections. Are there any medications that do not contain these fillers. Or is there another pre med she can take. At this time she is unable to Remicade.
A: I hope the Stelara is working and that your daughter’s Crohn’s is in deep remission. You are describing a local site reaction, and these can be quite common. You are correct that this may be from the non-active ingredients (we call these excipients rather than fillers) or it could be a local reaction to the medication. One non-drug interventions that helps with this is to assure that the site of injection is rotated from dose to dose. Additionally, we have had great success with “conditioning of the injection site” by applying an ice pack for 10 minutes prior to the dose. Regarding medications, if it is not painful, she may not need the Tylenol and the Zyrtec or a Claritin may be enough to allow her to stop the Benadryl which often times causes drowsiness in adolescents.
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 16 year old daughter was diagnosed with UC in October. She has taken steroids and Mesalamine with no relief from the bleeding. They are now wanting to put her on Humira. I am nervous about putting her on biologics and was wondering what some of your experiences have been with using biologics? Can she achieve remission?
A: The PROTECT study was a prospective, multi-center, NIH funded study of newly diagnosed children and adolescents with ulcerative colitis (UC). Important findings of this study included the fact that 40% of pediatric UC will be maintained by mesalamine. Which means 60% of children and adolescents with UC will need biologic therapy to maintain steroid-free remission of their UC. In truth, you daughter is already on the most toxic medication we use for UC, that is, Prednisone! In addition to anti-TNF therapy such as Humira or Remicade, Entyvio (vedolizumab) may be an option for her. This is administered intravenously like Remicade but the main target is the proteins in the bowel which assist movement of inflammatory cells from the blood stream to the intestine making the effect more specific to the bowel (“gut specific”). In addition to decreased systemic effect and being a more targeted therapy, there was a head-to-head comparison trial of Entyvio vs. Humira and Entyvio showed some superiority in this trial (called VARSITY). Officially, Entyvio is approved for ages 18+ but there is substantial pediatric experience and in light of the findings in VARSITY, we have had good success getting Entyvio for our less than 18-year-old patients.
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 23 year old son was diagnosed with severe ulcerative colitis. My question is what to expect after we get his current situation under control. The priority is getting him better but am wondering if he will be able to return to his job as an apprentice lineman when he is in remission. He works long hours outside in the heat? I am worried about him getting dehydrated spending so many hours in the sun.
A: I am sorry that he is having to go through this and want to reassure you that remission = normal. So your health-related concerns would be the same as for anyone else who has a demanding job. Your priorities are exactly correct—first the remission. Once that is there, he should wear sunscreen, cool clothing and stay well hydrated—same as everyone else on the line!
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Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
November 2020
Q: My son is 7 and just diagnosed with Crohn's. His disease is severe. The doctor gave us a choice Humira or Remicade. How do you decide about which medication to choose?
A: This is a very common question. In my practice, we stress the importance of shared decision making between the physician, the parents and the most importantly, the patient. When selecting a new medication, it is key to be completely informed. As both adalimumab (Humira) and infliximab (Remicade) target the same inflammatory protein (TNF-alpha), their efficacy (remission rates) are essentially equal for Crohn’s disease. In addition, the safety profile are similar. How are they different. Adalumumab is given as an injection (typically in the lower abdomen or upper thigh) at home and infliximab is given as an infusion requiring an intravenous (IV) catheter with each dose. Adalimumab is injected every 2 weeks (although some patients require weekly dosing). The first 3 doses of infliximab (induction) are given over 6 weeks with maintenance doses given every 8 weeks (some patients may require infusions every 4-6 weeks). Infliximab infusions require outpatient visits at infusion centers with the infusion lasting 1-3 hours. Factors to consider between the two: convenience (home vs. infusion center) and patient preference to medication delivery (injections vs. IV starts). At our center, all patients starting infliximab receive the first 5 doses over 3-hours at our infusion center. If the infusions are well-tolerated, we provide the option of receiving those infusions over 1-hour and at the patients home with a nurse from the home health agency.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I am 15 and my dad has Crohn’s. Recently I’ve started showing symptoms and I know I need to tell my parents so I can see a doctor and find out if that’s what it is, but I don’t know how to tell my parents. I am terrified and I do not know what to do.
A: Whenever a parent is ill, it is natural for a child to be concerned about their own health. Although we know a family history of Crohn’s may increase the risk of Crohn’s disease in their children, it is also important to know that many of the signs and symptoms that are associated with Crohn’s disease are also shared with other illnesses, such as gastrointestinal infections (bacterial or viral causes), irritable bowel syndrome (IBS) or Celiac disease. In my practice, it is common to see siblings or children with a family history of Crohn’s disease and find out (by examination or testing) that the primary symptoms are secondary to another cause and not Crohn’s disease. In your situation, it is important to discuss these symptoms with your parents so they can make an appointment with your regular doctor. Your doctor will carefully listen to your symptoms, check your growth (height and weight), perform a physical exam and potentially order blood or stool tests to determine the cause. The sooner a diagnosis is made, the faster a treatment can be offered. If any of the symptoms are concerning for Crohn’s disease, your doctor will make an appointment with a gastroenterologist, a doctor specialized in diagnosing and treating Crohn’s disease. It’s really important to know that in the present day (2020), there are many more medication and dietary options to better manage Crohn’s disease than were available to previous generations. I tell each patient newly diagnosed with Crohn’s disease, that regardless of the ups/downs or curves in their road to recovery, our goal is to find the best treatment that puts them back on a straight path toward achieving all their personal goals!
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I was recently diagnosed with UC as a 30-year-old female. I had always assumed I would have children, but now I am worried about the risk children might face. What is the absolute risk that my children would develop IBD or another autoimmune disease? Of 100 children born to women who have UC, how many go on to develop an autoimmune disease?
A: While the cause of the inflammatory bowel diseases (IBD, ulcerative colitis and Crohn’s disease) is multifactorial, the current data suggests the absolute risk for UC is 1.6% with maternal UC and 2.7% with maternal Crohn’s disease. If both parents have IBD, then the overall risk is increased. It is important to discuss family planning with your gastroenterologist as there are some medications that may need to be stopped or changed prior to becoming pregnant. While there is so much more to learn about the risks of developing IBD, we do know the three main components are (1) genetic, (2) environment exposures and intestinal microbiome and (3) an inappropriate immune response. For IBD to develop, it’s a combination of the perfect storm of all three components. It’s natural for parents/patients to ask what they can do to prevent IBD in their own children? The latest data would suggest that environmental triggers that increase the risk of IBD are (a) exposure (active or passive) to cigarette smoking (b) increased use of antibiotics, (c) increased use of nonsteroidal anti-inflammatory drugs (NSAIDS like ibuprofen) and (d) consuming a westernized, highly processed diet. The current data also suggests that the key to optimal the best outcomes (child or adult) is recognizing (awareness) the symptoms of IBD, early diagnosis and timely treatment.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 18-year-old son was recently diagnosed with ulcerative colitis. He is 5’11” and is down to only 126 pounds. His body is not absorbing nutrients. They are going to put him on Humira and steroids. I have read the side effects of Humira and it scares me. What are his risks of taking Humira at his young age? He is also very depressed. What can I do to help him?
A: Although the diagnosis of ulcerative colitis or Crohn’s disease can be difficult for any patient at any age, it is important to recognize that depression and anxiety are extremely common when the diagnosis occurs during adolescence and young adulthood. At our center, we offer every child/young adult the opportunity to meet with our IBD-focused psychologist. We find that young patients really need an outlet to express their feelings as our behavioral specialists focus on teaching techniques to cope with the disease. Whether it’s use of guided imagery or deep breathing, coping is a learned behavior that young patients may not initially intuitively recognize or take the time to practice. It’s important to recognize when to ask for help with a psychologist or psychiatrist, even if your treatment center doesn’t have access to an IBD-focused psychologist. Adalimumab (Humira) is a medication that binds to a protein in the body called TNF-alpha. The multiple studies in adults and children have shown that it not only heals the intestinal tract, but also improves growth by improving gut absorption of key nutrients and improving the overall quality of life for the patient. It is classified as an immune-suppressing medication. While the use of this medication can be associated with an increase risk of certain infections, this is uncommon. Prior to starting, your doctor will check for an active TB infection and may check for active intestinal infections or fungal infections. The additional risks such as an allergic reactions to the injection, rashes, liver injury, and certain cancers are also very low. It’s important to discuss the specific risk/benefits with your doctor so they can tailor the treatment to your needs.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 17-year-old son has now chipped and broke 3 bone areas. He is on Remicade and these areas have not healed after surgery. Does Crohns affect bone health and healing or is it the meds?
A: Crohn’s disease can certainly impair bone health as all patients are at an increased risk of nutrient deficiencies (Vitamin D, Vitamin B12, zinc, iron and folate). Moreover, some Crohn’s disease patients may restrict their diets (such as dairy-free, lactose-free) to control symptoms, and therefore, can further exacerbate the risk of poor bone health by limiting both Vitamin D and calcium. For your 17 year-old son, it would be important to keep a 1-2 week diet history to further review with your gastroenterologist or registered dietician to better understand if his current diet is lacking specific nutrients. Given the history of poor bone health, he may require additional Vitamin D and calcium depending on this diet history. In my practice, we check Vitamin D every 6 months (supplement when needed) and check a bone density at the time of diagnosis and repeat if needed (such as following recurrent fractures or more severe disease). While clinical remission (no active gastrointestinal symptoms) is an important goal, we now recognize that complete gut healing is even more important in order to prevent further complications of Crohn’s disease. It is reasonable to review your laboratory markers with your doctor and ask if further testing is needed (endoscopy or abdominal imaging). In regards to the medication, we typically find that the infliximab (Remicade) improves intestinal absorption of key nutrients by healing the gut. As each patient requires personalized care for their IBD, I would recommend discussing potential medical side effects with your primary gastroenterologist as well.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
December 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. I am currently on methotrexate and I don't want to have to go on biologics. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: I am concerned that you may be constipated due to the narrowing that you describe. If your doctor does not think that you need different medications or a surgery for the narrowing then I can suggest some tricks for the constipation. Limited amounts of soft, cooked vegetables and vegetable soup, plenty of water (64 ounces or more) and using a laxative as directed by your doctor can all help. The best lifestyle change can be walking. I suggest discussing with your doctor whether you are at the point where methotrexate is the right choice for you or you might need surgery or escalating therapy. Trying biologicals too late does not help with reversal of disease.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
September 2019
Q: My 12-year-old son was diagnosed with UC/pancolitis in March 2018. He is trying different meds.He says he has constant stomach pain. Sometimes it is worse than other times, but it never fully goes away. A lot of the time he does not want to go to school because of fatigue and hurting but then he will cut up with friends and play xbox in his room. This disease is new to both of us and I am trying to understand what he is going through. How can I best support him?
A: I think the most difficult aspect of treating any patient (but especially children) with a new diagnosis of UC is allowing time for the patient to understand that UC is a chronic illness and that any treatment will take time to work. For a patient with a relative new diagnosis, this is the first time they haven’t felt better quickly after seeing a doctor. For most, patients see a doctor for a more mild ailment and it’s a quick fix with an antibiotic or a tincture of time. With UC, every treatment takes time to start working. For your son, I would suggest supporting him through the abdominal pain with comfort foods that don’t increase his GI symptoms and rest (reading, meditation, even video games) for his body to start to heal. I would also focus on the fact that despite his current symptoms, he will get better over time. Although the disease is life long, most patients return to their activities and “forget” they have UC. I would also suggest that you look into your local Crohn’s and Colitis chapter and see if there are parent or peer mentors for the both of you. Sometimes, hearing what other parents had to go through and techniques they used can be very helpful. Some pediatric hospitals also have peer mentors that the children can get in touch with, whether electronically or in person. Finally, I find it very helpful for patients who have been newly diagnosed to speak with a behavioral specialist (psychologist) as they can offer a variety of helpful coping skills for when the disease is active.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 13 old son was diagnosed w/mild case of Crohn's a year ago. Pentasa is not working for him and the Dr wants him to go on a biologic. Entyvio seems safest from what I have been reading. Can children be on Entyvio or should another biologic be tried first?
A: Great question! This is a really important question and one that does not have a straight-forward answer unfortunately. The short answer is, we just don’t know. The anti-TNF medications (infliximab and adalimumab) are the only FDA-approved biologics for pediatric patients with moderate-severe Crohn’s disease. Use of any other medication, like Entyvio, is considered off-label use. Entyvio is FDA-approved for adults with ulcerative colitis and Crohn’s disease. With that said, pediatric gastroenterologists have been asking the same question, “is there a certain group of children/adolescents that would benefit from Entyvio as their first biologic?” We don’t have the answer yet. There is some data to support that this could be a good option for some patients and I would encourage you to have this discussion with your primary GI physician.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 12 year old daughter was diagnosed with UC, with high grade dysplasia in her colon and low grade dysplasia in her small intestine. She started Prednisone and mesalamine 6 days ago. After consulting with other adult doctors, they have recommended she start Humira or Remicade. Both of these drugs seem pretty serious but is one preferred over the other. They want to scope her again in 3-5 months. Does dysplasia usually go away when the inflammation is reduced?
A: Only infliximab (Remicade) is FDA approved for pediatric UC. Adalimumab (Humira) is FDA approved for adults with UC, however, Humira is often used off-label for pediatric UC. Depending on the severity, Remicade is often preferred given its relative quick onset of action. If your daughter is admitted to the hospital, then Remicade is the preferred biologic. Both medications have a good safety record in children. In regards to the dysplasia question. This is relatively uncommon in children, especially at diagnosis. I would agree with close surveillance. I would also suggest that the biopsies be reviewed by a either a pediatric or adult pathologist who is an expert in intestinal dysplasia to confirm the diagnosis.
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Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2018
Q: My friend's son is 14 yrs old and was recently diagnosed with Crohn's disease. He is constipated. What type of diet would best suit him?
A: Because it is a recent diagnosis, there is likely inflammation in the intestine, rather than remission. The amount of inflammation in the intestine can be determined by medical tests (labs, endoscopy, etc.) and will help us decide what diet is recommended for him. A diet that is lower in fiber including refined grains, cooked vegetables and soft fruits without seeds and skins is recommended when there is inflammation, because fiber is irritating. The doctor can recommend a (non-fiber containing) medication to help with the constipation until the inflammation is improved. Once a patient is in remission, we encourage a gradual increase in fiber to a Moderate Fiber diet which would include whole grains and more variety of fruits and vegetables.
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Pamela A. Duncan, MS, RD, LDN
Dietitian III, IBD Clinic, Vanderbilt University Medical Center
May 2018
Q: My 17 year old son was diagnosed 6 month ago with UC. He started Humira injections 3 weeks ago and we’ve seen no improvement. When should we begin to see results? Additionally, his body temperature has recently (& occasionally) dropped to 96.2. Is this a common side-effect of Humira?
A: Most individuals who are going to respond to the medication will feel some improvement within the first four weeks of treatment. Reasons for lack of response include antibody development against the medication or “primary non-response” to therapy (i.e. the drug mechanism is not working for the disease). If there is no resolution of symptoms after 8 weeks of treatment, then typically a new medication should be tried. As for the low body temperature, the most common cause is an inaccurate reading. However, if the temperature is taken orally and was not taken soon after a cold beverage, another consideration is that he may have an infection. Presumably, you are checking the temperature for a reason (i.e. him feeling unwell) and humira (as well as some other IBD medications) suppress the immune system and can increase the risk for infections. If this a concern, please notify your medical provider right away.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
June 2017
Q: I'm 15 and in high school. I wanted to know if I can get some advice on how to handle my Crohn’s symptoms in school. How to deal with embarrassing situations of needing to go to the bathroom in school and in public.
A: Proper preparation can help with the stress or anxiety of a potentially embarrassing situation. Make sure you have an “emergency kit” in your locker or school office. Tell a trusted friend or teacher where you keep it, in case you need someone to bring it to you in the bathroom. Common items for the kit include: wet wipes, underwear, pants or leggings, large size freezer bag to transport soiled clothes, hand sanitizer and perhaps some Poo-Pourri or air freshener. It is important to remember, you may NEVER need these items, but it can feel reassuring to know they are available. In terms of frequent or urgent bathroom use, speak to your teachers about your IBD and let them know you may need to leave the classroom without permission or a pass. If they know ahead of time, this can take away the focus of your bathroom use and normalize the experience. It is important to de-stigmatize your IBD and therefore, talking with friends and teachers can help them to understand your needs and provide you with support when needed. There are also options for accommodations through the 504 Plan that you, your medical provider, teachers, parents can develop if your IBD and treatments are affecting your school performance or experience. For example, you may be able to “stop the clock” during exams if you needed to use the bathroom. There can even be ways to keep an emergency kit in or very close to the school bathroom you use. It's important to remember that stress doesn’t help anything. Therefore, if you are feeling embarrassed, reach out for support. Often times we experience more anxiety related to the possibility of a situation happening, and forget that whatever you are faced with…you will be able to cope. Having a good support network can make coping much easier. For additional information about being a teenager with IBD, check out: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf
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Megan Riehl, PsyD
Assistant Professor of Medicine
June 2017
Q: My Daughter is 13 and was diagnosed in March 2017 with very aggressive CD. She is on Remicade, Metronidazole, steroids and an antibiotic. She has a persistent cough that usually makes her throw up. What are some treatment options to get rid of the cough?
A: There seem to be 2 questions here, first, why does your daughter have a persistent cough, and second, how can it be treated. I would suggest that the first is the more critical question to address as the second will almost certainly depend on it. A cough is quite non-specific as it may reflect active infection, non-infectious inflammation or injury, hypersensitivity following acute illness, or tic-like behavior among others. The association with the vomiting is not too helpful in differentiating as while some coughs are classically associated with vomiting, some individuals simply vomit due to stimulation of the gag reflex while coughing. Important questions to consider would be duration of the cough, presence of cough while asleep or not, associated features of illness such as fever, fatigue, or weight loss, and travel or sick contacts leading up onset of the cough. As you mention both metronidazole and an antibiotic, I’m curious whether you meant to write methotrexate- the reason I point that out is that methotrexate has rarely been associated with inflammation in the lungs. Inflammatory bowel disease on its own may also lead to inflammation in the lungs as well, and being on multiple medications that suppress the immune system such as steroids and Remicade further increase the risk of infection. All that said I would say the most important thing would be to make sure you communicate the presence of the protracted cough to your daughter’s physician. If ultimately it is simply a cough without associated inflammation or infection there is unlikely to be any particular medication to prescribe, but breathing exercises and other relaxation techniques may be helpful in enabling a degree of suppression.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: My 15 year old son was diagnosed with Crohn's in early May. The doctor started him on Pentasa but he developed hives all over body. They took him off Pentasa and started him on Prednisone. He is taking Benadryl for the hives but they have not stopped. He is also on VSL3. I'm wondering if VSL3 could cause the hives or do we just need more time for the Pentasa to get out of his system.
A: Significant skin reactions, while relatively common with sulfasalazine, are uncommon with mesalamine (Pentasa). When skin eruptions are related to a particular medication, discontinuation of that medication is the most effective therapy. It can be very difficult to determine the specific cause of hives, but I would not expect persistent hives, especially after receiving steroids and Benadryl, if Pentasa were the sole cause. There are a number of skin conditions associated with Crohn disease and it would be important to follow-up with your son’s gastroenterologist or dermatologist to ensure that what is thought to be hives is not actually something else. With respect to the VSL#3, it’s difficult to say; if it was started around the same time as Pentasa and around the same time as the eruption of the hives it would seem reasonable to trial off it as well.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: My 13 year old daughter has crohn's disease, she was diagnosed 2 years ago after we noticed she wasn't growing. She in basically in remission with the help of her Remicade infusions every 6 weeks. She has been getting these infusions from an outpatient hospital setting and now our insurance notified us that we now have to do at home infusions for her. Is there a risk in doing infusions at home instead of outpatient? How do we find a home infusion service in WI?
A: It’s a bit difficult to answer this question as I am in different region of the country. That said I have many patients receiving home infusions of Remicade who are doing very well and love the convenience of it. There do not have to be any inherent risks in having home infusions versus outpatient infusions assuming you have experienced professionals administering the medication who are prepared to deal with the possibility of allergic/infusion reactions; however, that is quite an assumption. I would suggest touching base with your insurer to see which home infusion companies are available, and then reach out to your physician to see if they have any experience working with any of those companies. Be aware that some insurers may “require” home infusions in theory, while in practice the local infusion companies may not provide services for children- if that is the case some “education” of the insurer may be necessary.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: I'm 16 years old and I was recently diagnosed with Crohn’s Disease in early May. I have been experiencing what they call "moon face" due to the prednisone I've been taking. Is there any way to reduce the swelling? I will start my Remicade infusions soon and I was wondering about the side effects of the medication.
A: You raise an excellent question and one that is bothersome for many. As you seem to be aware, what is described as a “moon face” is a recognized side effect of prednisone. Unfortunately, I am not aware of any way of addressing this aside from coming off prednisone. It sounds like a plan is already in place to start treatment with Remicade which should allow for relatively rapid tapering of the prednisone.
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Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
April 2017
Q: Our 14 yr old son was diagnosed with CD in 7/2016. He was having back pain and had an X-ray. In Jan 2017 had another X-ray and compared to the July one, he had major deterioration even though he hasn't had IBD issues in months. He has compression fractures in his spine. He was on steroids for 2 months but has been doing well on Remicade. He has gained 22 lbs but no growth in height. The dr wants to put him on bisphosphonates. Is this a standard treatment in CD patients with a fracture?
A: Vertebral compression fractures can be caused by osteoporosis, trauma, or diseases affecting bone (pathologic fracture). The trauma/injury to the area would likely need to be substantial and you did not mention any major accident or injury to the area so low density most likely the issue. Other bone diseases could play a role especially given the short time since diagnosis and should be excluded. Young patients should get a bone age and a bone density shortly after diagnosis to see if there is delay in bone growth and to see what the baseline bone density is. There could have been IBD going on that affected the bone that was not severe enough to cause obvious gastrointestinal symptoms prior to diagnosis. If there was a fracture but bone density was not low, bisphosphonates would not be indicated. IBD can affect bone density for multiple different reasons with about half of patients showing a significant reduction in their bone mass. Bisphosphonates would not treat his current fracture but would try to address the low bone density so a future fracture is less likely. This class of medication is not commonly used in pediatrics especially while bone is still gaining in height and mass. Its use is more often reserved for patients with specific bone diseases. It is thought to be reasonable for use in chronic illness if there is history of multiple low trauma fractures or a vertebral fracture history combined with a very low bone density. I would say the next appropriate step is an appointment with a pediatric endocrinologist. Their role is to help advise use of these medications and help weigh risk and benefits and provide other options as well as rule out other issues that could be playing a role. One can also try to improving bone density with increasing weight bearing exercise. This could be done with a physical therapist to make sure this is done safely in someone with a fracture history. Having optimal control of the IBD.
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Philip Stein, MD
Attending Gastroenterologist, St. Christopher's Hospital for Children
December 2016
Q: How can I help my 14 year old daughter manage side effects of Entyvio? She had her first infusion last week and today is having back pain so much that her bra hurts. She is in tears once she came home from a long day of school and rehearsal. She is also having the feeling of nausea. Would ibuprofen help?
A: I would recommend contacting your pediatric gastroenterologist as soon as possible to address this complaint which may be a non-specific side effect, but possible underlying causes (arthritis, bone infection) should be ruled out.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: My 12 year old son was just diagnosed with cd. I am having a hard time having him change his diet and understanding that he has to adjust his lifestyle. He is 12 years old, weighs 60 lbs has lost 25 lbs this year. Should I get him a dietician to help come up with a diet to help him gain weight? Is there a preferred diet for children?
A: Yes, your pediatric gastroenterologist should be able to direct or refer you for a dietician consult. There are several strict diets, such as gluten free diet, specific carbohydrate diet, or exclusive enteral nutrition (exclusive formula diet) that have been shown to provide therapeutic benefits in children with Crohn’s disease. It is very important to work with your gastroenterologist in respect to this question.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: My 12 year old son was diagnosed with moderate to severe Crohn’s this past summer. He has been taken off prednisone, but remains on methotrexate and remicade infusions. He has his fourth infusion in a few days. He doesn't have "bathroom issues" but has severe pain in his upper abdomen and body pain. Is it "normal” not have problems bowel movements but have ongoing pain?
A: No, at this stage most patients would be symptom free. Actually, rebound constipation may be a common cause for the complaints, but it is very important to notify your pediatric gastroenterologist as soon as possible for her/him to address the complaints.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2016
Q: My daughter is 16 and has CD. Her doctor has recommended Remicade. He also indicated that they can now “push the dosing”. He said the infusion can done in a shorter period of time than two hours. I can’t find any information on Remicade infusion being completed in less than two hours. Do you have information on faster infusion times?
A: There are scientific studies showing safety and tolerability of rapid infusions of Remicade. I am not aware of any patient-focused literature discussing this topic. I would recommend bringing your questions to your daughter's physician to discuss further with him or her. This is not yet typically standard of care at most hospitals, but is being offered at more and more infusion clinics.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
June 2016
Q: My son (14) was recently diagnosed with ulcerative colitis. His only symptoms were gas, and fatigue and shortness of breath with exhaustion from anemia. Never any pain and only infrequent diarrhea. He was on prednisone for 7 weeks and is now on 6 MP and Apriso. I am worried about 6 MP from all I've read, especially in adolescent males. Can he be treated with Apriso alone since he's really never had typical symptoms of UC?
A: Not everyone with ulcerative colitis has diarrhea or blood in their stool. Some have pain or urgency with bowel movements. Fatigue is also a very common symptom with IBD. For many children poor weight gain or growth may be their only symptom. While it is good that your son doesn’t have many symptoms, that doesn’t necessarily mean that his disease is fully under control. It is important to ask your doctor how well his colitis is controlled because inflammation can cause problems, even if he doesn’t feel it. Chronic, ongoing inflammation of the colon can increase the risk of a flare of colitis, interfere with growth, increase his risk for certain infections, and also increases the risk of colon cancer too. For all these reasons, it’s best to have his colitis under control. Fatigue is an important symptom that can happen for many reasons. For some, it’s the main symptom of their colitis. Anemia can also cause fatigue, and often is a sign of active disease. Also thyroid conditions can develop in people with IBD. Some people with IBD also have sleep disorders, which make them fatigued. And, of course, teenagers often stay up late at night and are fatigued simply from lack of sleep. It is important to discuss his fatigue with your doctor to help sort out what the cause of the fatigue is. Now regarding medications. Most of the time, 6-MP is used either because someone has moderate to severe colitis or because mesalamine medicines (like Apriso) didn’t work. In these situations, the mesalamine family of medicines are generally not effective, and occasionally can make colitis worse. All medicines have risks. The risk of 6-MP is low, but it does have risks. There may be other alternatives to 6-MP. But each has its own risk. And it’s also important to remember that there is risk to colitis that is not well controlled (even without dramatic symptoms). So I encourage you to talk with your doctor about risks of his medicines and what the alternatives may be.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: My 13 year old son diagnosed with Crohn's disease at age 6 has had an allergy to Remicade, and just recently Cimzia after two years of use. He also takes 6MP. Next choice for treatment is supposed to be Humira, but we are wondering what the possibility of another allergic reaction?
A: Although Remicade (infliximab) and Cimzia (certolizumab) are both anti- TNF agents, they are designed quite differently. You mentioned that your son experienced allergies to both of these medications. Adverse reactions to these medications are not always allergies. Typically, having a reaction to an anti-TNF agent would not deter a change to another anti-TNF agent. In fact, if a patient experiences a type of adverse reaction that requires a change in medication (decided by the physician) and the current anti-TNF agent has been effective in treating the Crohn’s disease, often the physician will switch the patient to another anti-TNF agent. Humira (adalimumab) is another anti-TNF agent. One of the most common adverse reactions of adalimumab is an injection site reaction. Clinical studies have reported injection site reactions in 12 to 38 % of adult patients treated with adalimumab. Most injection site reactions are mild and do not require stopping the medication. One cannot predict whether or not your son will develop a true ‘allergic reaction’ to adalimumab. Your son’s pediatric gastroenterologist knows the details of his Crohn’s disease and the types of reactions he has experienced. He/she will be the best resource to discuss his treatment plan and your concerns.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
November 2015
Q: My daughter was diagnosed at 13 and since that time has had terrible anxiety. Is anxiety brought on by ulcerative colitis? is this common in teenagers
A: Anxiety and psychological distress is common in patients suffering from inflammatory bowel diseases, including ulcerative colitis. Psychological evaluation and support by trained experts is highly recommended. It is frequently difficult to discern whether the disease and flares bring about the psychological distress, or if periods of emotional stress can induce disease flares. There is intense communication between our brain and our intestines, frequently related to as the gut-brain axis. Therefore, it is possible for gut inflammation/stress to induce anxiety, and vice-versa.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
August 2015
Q: My 16 yr old daughter has IBS. But I think its Crohn's. She had one hospitalization (they could find nothing). She has been off and on "better", but randomly for the last couple of weeks very sick. She has lost weight and is so thin that I'm worried about that as another issue. (5'6" and maybe 100lbs). She is so tired and is getting depressed because it really seems as if our health plan has decided there's nothing wrong. We have a peds GI. What else should we do to find out what is wrong?
A: I am sorry to hear your daughter is having these problems. It is great that you already have a pediatric gastroenterologist your daughter is seeing. I would continue to discuss with your physician your daughter’s specific symptoms and ask for their recommendations. If you are not comfortable with your current physician, seeking a second opinion is also always an option. You mentioned your daughter is becoming depressed, so please seek treatment for her with your primary care physician or a psychologist, as it could also be impacting her symptoms. If she has any thoughts of self-harm then that is a medical emergency and would need to be seen in an emergency room.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I am 16 years old and have had Crohn's disease for 3 years. I lost some weight but gained it all back. I’m on a low residue diet. It is hard to stay healthy and keep my weight the same. I can't have fruits or vegetables. The vegetables have to be cooked but I don't like vegetables anyways. But I do like fruit. Not being able to eat healthy things has made me gain so much weight and I'm starting to feel insecure. I don't know what to do to get my weight down. Do you have any suggestions?
A: First, I commend you for your desire to be healthy and maintain a healthy weight. I would recommend speaking with your gastroenterologist about your concerns and ask if you can be referred to a Registered Dietitian. A dietitian can help you develop a plan for a healthy diet within your specific dietary requirements.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: My son 9 yrs old son has an abscess around his rectum. He is in the hospital and the doctors have done tests/scopes and are telling us that he has a mild case of Crohn’s Disease. He does not have any of the symptom's that are associated with Crohn’s now or in the past. The doctors have recommended Remicade. Can someone have Crohn’s without having other Crohn’s symptoms? Is remicade the most appropriate choice for mild disease?
A: It is possible to develop an abscess from a fistula and have this as the only manifestation of Crohn’s disease. However, a fistula that leads to an abscess does often have a component of bowel related inflammation, ie ulcers or inflammation in the rectum/colon or small bowel. If he does have evidence of active Crohn’s disease in the bowel and has an abscess from a fistula, then “yes” Remicade is a very appropriate treatment choice.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2014
Q: My son was diagnosed in 2013 (at age 5) with ulcerative colitis. He had his colon removed in June 2013 and has an ileostomy bag. Dr.'s would like to do the j-pouch surgery on him, but I am very skeptical. How would I find parents of children my son's age that have ileostomy bags and going through similar situations? I see parents of much older children, but not younger ones. I am a single mother trying to deal with this all alone and I feel lost and overwhelmed.
A: While the decision to have j-pouch surgery is ultimately left for the gastroenterology and surgical experts, the CCFA is a wonderful resource to connect with other patients/parents with similar experiences. Speaking with the treating surgeon and IBD gastroenterologist may also provide patients/parents to exchange experiential stories. While IBD is a challenging disease at any age, younger children can often adapt quite well even to surgery, especially when the adults around them are able to make them feel comfortable about themselves. This positive adaptation is likely a result of a still formative self-identity in early years of life which is especially responsive to environmental influences, especially parental reactions. If the child does seem frightened, angry or depressed about having IBD or surgery, a few sessions with a behavioral specialist can be helpful to help teach coping skills often using play therapy techniques.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2013
Q: My 11 year old son has just been diagnosed with Crohn's Disease. His doctor, a pediatric GI, has given me the option for the next level of treatment as Imuran or Remicade. What are your experiences with either of these drugs for young children?
A: I am an adult gastroenterologist but sought the opinion of four pediatric gastroenterologists. Either medication can be used, depending on the details of the individual case. They had no particular preference, in general, between Imuran or Remicade treatment in an 11 year old.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
December 2012
Q: Should recurring C Diff in a child be a cause for concern? Say recurring 3 times in 2 months and after taking antibiotics?
A: Clostridium difficile is a bacteria that can cause inflammation and diarrhea in pediatric or adult patients without or with inflammatory bowel disease. Although proper studies are still lacking, some evidence suggests that people with inflammatory bowel disease are at greater risk for infection with Clostridium difficile than those without disease. The initial treatment of Clostridium difficile in children can fail more than one-half of the time, regardless of the treatment. This failure might occur because the bacteria is resistant to standard therapy or the patient is a carrier of the bacteria. Carriers can be asymptomatic for months without treatment of the bacteria, but it is unclear whether they will remain so if immunomodulator or biologic agent therapy is initiated for the inflammatory bowel disease.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: My daughter has Crohn's disease and she won't have a bowel movement for a couple of days and then when she does it is very painful and hard to get out. The stool is soft in consistency and is sometimes flat. We have tried laxatives and stool softeners but they just seem to make her go more often, but still painful and difficult to get out. She had normal bms after an increased dose of infliximab, but that only lasted 2 1/2 weeks (tests show no antibodies to the biologic). What can we try?
A: Crohn’s disease can affect any portion of the intestine from the roof of the mouth to the skin around the bottom, which is also known as the anus. Difficult or painful bowel motions can be caused by disease-related disorders such as narrowing, fissures, or ulcers of the anus. Infliximab can be beneficial in treating some patients with disease of this area. Any patient with these symptoms should generally be thoroughly examined and this examination must frequently occur in the operating room because it is too uncomfortable to perform in another setting. Further treatment would be based upon the findings of this examination.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
September 2012
Q: How common is the use of methotrexate combined with infliximab to treat children? My nine year old just had small bowel resection due to a stricture - previously was on 6mp. Do studies show that methotrexate significantly decreases the chance of developing the antibodies to infliximab? Does the benefit outweigh risk?
A: Methotrexate is not used commonly to treat children with Crohn’s. 6MP is much more commonly used. Methotrexate does decrease the formation of antibodies to infliximab, probably increasing the effectiveness of infliximab. The benefits versus risk depend on the individual situation and would be best discussed with a pediatric gastroenterologist.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
March 2012
Q: I have been on adalimumab since 2009 and it has been working to keep my Crohn's under control, but I have very bad perianal disease which the adalimumab does not seem to reach. My doctor wants me to start taking adalimumab every week, but I was wondering if there were any other options to help with the perianal disease.
A: Medical treatments with potential efficacy for treating perianal disease include antibiotics, azathioprine and 6MP, biologics like infliximab and adalimumab, and cyclosporine and tacrolimus. Depending on the specifics of your disease, surgical treatments are a consideration as well, and you should discuss this with your doctor.
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Experts 2010-2011, MD, etc.
n/a
March 2012
Q: My son was diagnosed in 2009 with Crohn's disease and is now 14 yrs. old. He is currently taking a biologic. Has there been any research as to the chemical reaction of the disease and/or biologics and depression? I realize having a life long illness takes its toll, but I am wondering about the chemical reaction of having an inflammatory disease.
A: There is no data that I am aware of that has linked the mechanisms (or “chemistry”) of inflammatory bowel disease to causing depression. However, depression is very commonly seen in patients with IBD given the lifelong illness it causes. CCFA has many resources available regarding coping and emotional factors. Be sure to contact our Information Resource Center (888.694.8872) to learn more and check out our educational brochures and fact sheets at http://www.ccfa.org/info/brochures.
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Experts 2010-2011, MD, etc.
n/a
March 2012
Q: Is there any research on the safety of taking growth hormones while on a biologic?
A: There have been no controlled studies looking at the safety of taking human growth hormone while also receiving a biologic.
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Experts 2010-2011, MD, etc.
n/a
March 2012
Q: My 2 1/2 yr old son was just diagnosed with "ulcerative chronic active colitis" but they said it is not being diagnosed as "ulcerative colitis." What is the difference?
A: There is no difference in ulcerative chronic active colitis and ulcerative colitis. They imply the same thing.
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Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I have Crohn's disease and also have back issues (herniated discs, tarlov cyst, spinal stenosis, etc), plus nerve damage. I am in the process of applying for SSD. How can I explain my inabilities?
A: The SSD application should allow for including information about functional limitations related to both your back and your gut. Supporting documentation from your doctors should help. CCFA has sample appeal letters that you or your health care provider can use. Visit the Community Resource Center (http://www.ccfacommunity.org/ResourceCenter.aspx) for more information.
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Experts 2010-2011, MD, etc.
n/a
February 2012
Q: If my son has Mesalamine-Induced Acute Intolerance Syndrome, what is the next step for him to control his colitis? He is 16 and was diagnosed in Oct 2011 and has taken 4 mesalamine/day since. Recently he's complaining of a severe stomach ache and he has developed a rash on his face.What other options are there?
A: It is possible that he might do okay with rectally administered mesalamines. If he proves intolerant to these, then thiopurines and/or infliximab might be helpful.
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Experts 2010-2011, MD, etc.
n/a
January 2012
Q: I have Crohn's disease. My husband and I want to start a family. Is it likely that our children will develop Crohn's disease?
A: Studies have shown that Crohn’s can run in families. If you have Crohn’s, the chances of one of your children developing Crohn’s are about 1 in 10. At this point, there is no genetic testing available to inform this estimate.
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Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have Crohn's and polycystic kidney disease and am about to go on dialysis. I would prefer to go on peritoneal rather than hemodialysis, but my MDs and I are hesitant because of the need to invade the abdomen. Is there any medical evidence that Crohn's patients should avoid peritoneal dialysis? What do other Crohn's patients in this situation do?
A: Since Crohn’s disease affects all the layers of the bowel wall it is easier to form fistulas and develop abscesses. Crohn’s disease treatment also involves immunosuppressants. Any process that introduces foreign material into the abdomen can serve as a stimulus for infection or possibly a fistula and peritoneal dialysis is likely to be much riskier than hemodialysis.
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November 2011
Q: Is there a method to determine which biologic to use for the first time for a teenager diagnosed with Crohn’s that failed azathioprine therapy?
A: At this point in time there is no way to determine if one biologic medication is better than another for the treatment of IBD or to predict response to biologic therapy ahead of time. However, in the future it may be possible to make more informed choices about drug selection and response through genetic analysis. Ongoing research projects are actively looking for ways to predict response to medications, including biologic therapies.
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November 2011
Q: My daughter, 10, has ulcerative colitis and is taking infliximab. She had an infusion today and her SGOT levels are now 115 (highest they have been was 75 previously) and her SGPT level is now 43 (up from 28 last month.) Should I be concerned or am I just overly worried? Her other labs were within normal limits.
A: Mild elevations in liver function tests (LFTs) are fairly common in patients treated with biologic therapies, like infliximab. LFTs can also rise during treatment with immunomodulators, such as azathioprine, 6-mercaptopurine, and methotrexate. However, LFT elevations may be a sign of concomitant liver problems associated with IBD, like primary sclerosing cholangitis (PSC).These IBD-associated liver conditions can occur in any patient, including children. Although the LFT elevations are not dangerous in and of themselves, they should be monitored closely and if they continue to rise an adjustment in therapy and/or further investigation may be necessary.
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September 2011
Q: Does 6-mp or Azathioprine affect men’s fertility?
A: The effect of these medications on male fertility is not well studied. One study demonstrated that male sperm counts and other measures of fertility are normal in patients receiving azathioprine. Studies in animals have shown some differences in fertility in animals receiving azathioprine compared to those not receiving azathioprine, but it is unclear what this means for men. Currently, there is not enough information to recommend that all men should stop their azathioprine prior to starting a family.
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August 2011
Q: I always seem to flare right before my period, is this common in IBD patients?
A: Research has shown that there is a relationship for some women and their menstrual cycle. Symptoms of IBD can be worse the week before or the week of menstrual bleeding. Recognizing this pattern of disease behavior can help your doctor plan a treatment regimen for you which may include the timing of biologics or the recommendation of oral contraceptives to help minimize menstrual symptoms.
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July 2011
Q: My teenage son has Crohn’s and has been on infliximab for 4 years without active flare ups. When or how will we know when it is safe to stop the infliximab or to space out the doses? If we stop the treatments and if he flares up, will he be able to go back on the infliximab?
A: It is difficult to define an “exit strategy” for Crohn’s disease that is well-controlled on biological maintenance therapy. Increasing experience in children and adolescents using infliximab for maintenance therapy has demonstrated an improved quality of life, reduction in the need for corticosteroid therapy, fewer hospitalizations, and reduced likelihood of developing antibodies to infliximab. In studies observing outcome following discontinuation of infliximab in Crohn’s disease, approximately half of the patients will experience recurrent symptoms around one year, and about 35% of patients will remain in clinical remission. Some of the major issues with long-term use of infliximab include the risk of infection and rare cases of lymphoma. A major concern with discontinuation of infliximab is the development of antibodies that prevent its future use. Whether or not your son would be able to go back on infliximab is largely dependent upon whether his body develops antibodies to infliximab.
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June 2011
Q: What are the realities of life with a permanent ostomy? How do people experience and deal with physical, emotional changes? I have not been able to find much info, and only people that have had temporary, reversed or Jpouched.
A: The best thing to do is talk to someone who has had a permanent ostomy. Some local CCFA chapters offer “Power of two” programs to allow you to be paired up with other volunteer patients with inflammatory bowel disease who have gone similar experiences as you. If this is not an option at your local CCFA chapter, other options are the CCFA Community website (www.ccfacommunity.org) and the United Ostomy Foundation (http://www.ostomy.org) where you can find support groups and other resources.
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May 2011
Q: My daughter is away at college and is sexually active – she is on a biologic therapy for CD. Would going on birth control pills affect her medication or vice versa?
A: There is no evidence that oral contraceptives have any effect on biologics. It is important that young women on oral contraceptives not smoke, and certainly with Crohn’s disease these patients should not smoke.
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May 2011
Q: I usually go to follow-up appointments with one of my parents. However, this time, my parents can't get off of work.I am nervous because it's my first follow-up appointment without a parent to help me understand what the doctor is discussing. What kind of questions should I ask at this follow-up appointment?
A: I think it’s great you get a chance to go to an appointment by yourself – it’s good practice. First, think about any questions you might have for your doctor before you even go to the clinic. Do you have any questions about any symptoms, medications you’re taking (including over-the-counter medications), diet, or life with IBD in general? Or is there something you heard or read about IBD and you want to know if it’s true? Write them down and take them with you to the appointment. It’s so easy to forget your questions when you’re actually in the clinic. Next, consider taking a friend with you. It can get overwhelming when you’re getting a lot of information from the doctor, and sometimes you’re thinking about it all and how it’s going to affect your life, and you’re not really hearing everything your doctor is saying. Your friend can help make sure you hear and understand everything. You or your friend can take notes during the appointment, too. You know your parents are going to want to know everything the doctor said, so taking notes is a good idea! If you don’t understand something your doctor is saying, it’s okay to ask him or her to explain. It’s your doctor’s job to help you understand. You can say, “I’m not sure what you mean when you say…” or “Can you explain that a little more? I’m not sure if I totally get it.” Check out CCFA’s brochures to get additional questions that you may want to ask your doctor (www.ccfa.org/info/brochures). At the end of the appointment, it’s really helpful to sum up what you and the doctor talked about. That way you can make sure you know what’s going on.
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May 2011
Q: I have a very active 14 month old girl. When I am in a flare and feel drained, sick, and tired, my daughter and I both seem to have a hard time coping with the lifestyle changes. We are very active, so when I get sick, she has a very hard time adjusting to the "new" mommy that just bounces between the couch and the bathroom all day and I have a hard time adjusting to the "new" relationship that I have to have with her. What coping tactics do you recommend for raising children and having IBD?
A: It certainly is difficult to be the mom you want to be when you aren’t feeling well. Your daughter might initially be confused about why her “new” mommy is spending so much time on the couch and in the bathroom, but developing special routines for couch times will help her differentiate the active times from the less active ones. She’ll learn to adjust to both situations, both of which she’s going to encounter in other areas of her life too. You can have special toys, books, coloring books, videos etc. that only come out when you’re not feeling well. The key here is to bring these special things out ONLY during these times, to keep them special and engaging. You can occasionally add to this collection to keep it fresh too, but there’s no need to buy an entire new set of toys. You can also designate certain times during the day as “play alone times” in which she plays by herself. Given her age and usual activity level, these play times might need to be short initially, but they can be gradually lengthened. It’s very helpful to use a large, dial-type kitchen timer to set the amount of play time so your daughter can have a sense of how much time she has for “play alone time.” Give yourself a break, too. Everyone has less patience when they aren’t feeling well. This is definitely a time to ask friends and relatives to help out by taking your daughter for a couple of hours.
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April 2011
Q: My 15 year old son was diagnosed in Oct 2010 with Crohn’s. He has become very angry and withdrawn. Is this normal behavior when someone is diagnosed with a major disease? How can I help him get over the being angry and help him start to socialize with his friends again?
A: Mental health issues, for lack of a better name to describe them, are common in adolescents diagnosed with Crohn’s disease. Talking to your son’s doctor about avenues of help from psychologists, to social workers, to support groups and others can prove to be very helpful to your son. CCFA’s Camp Oasis is another good example. You, too, should seek out a parent support group for assistance in coping with this. Thankfully, and much of this thanks in part goes to the CCFA, there are more opportunities for help than ever before, including information on the www.ccfa.org website, www.ibdetermined.org website, and others. I wish you luck in this endeavor.
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March 2011
Q: I have a college age daughter w/Crohn’s disease who has been in remission for about a year. She recently started taking birth control pills. Could the birth control pills contribute to flare ups. Is there a particular pill she should be taking or should she avoid the pill completely?
A: There is some evidence of a relationship between birth control pills and Crohn’s disease, but studies have shown mixed results so the effects are probably minimal. In other words, the risk of a flare-up from the pill is very small. Most women with Crohn’s disease are advised to use a low estrogen formulation of the pill.
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February 2011
Q: My husband was diagnosed 29 years ago with Crohn's and he has a very strong family history. The doctors are saying that he has a very aggressive type of Crohn's and I am wondering if there was anything that our children should be doing. I know that there has been some genetic work done, but as far as I know there is not any treatment to help prevent them from getting Crohn's.
A: You are right. With a family history, there is a chance that one of your children may develop Crohns. However, the chance is higher that they won’t. At this point, we don’t have any changes in diet or other factors which you could use to try to reduce this risk.
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January 2011
Q: What is the effectiveness and safety rates of immunomodulators and biologic drugs prescribed for infants and toddlers?
A: The effectiveness and safety rates for immunomodulators and biologic drugs prescribed for infants and toddlers with IBD has not been tested in formal clinical trials. However, in practice both the effectiveness and safety of these medications appears to be similar to that experienced by older children and teenagers. It is important to judge the risks and benefits of these medications for your child together with your child’s doctor.
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December 2010
Q: Is it true that colitis gets less severe as you get older? I have heard from my doctor of some patients' colitis being "burned out" and no longer having flares. Could this be due to a naturally weaker immune system as people get older?
A: We know that as people get older that the immune system “burns out”. However, there are some studies that suggest that older patients have worse disease because they are not treated as aggressively or because of other health conditions. Some patients do experience a burn out of their disease, but at this time that is not the expectation.
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November 2010
Q: My child has Crohn's disease and is much smaller than his classmates. How can we help him achieve his full growth potential?
A: Reduced growth in children with Crohn’s disease is due to a combination of reduced nutritional intake, and inflammation from the Crohn’s itself. An approach which ensures that all of your childs nutritional needs are being met, and medications which reduce the inflammation, will be most likely to help him achieve his full growth potential. This may include providing supplemental nutrition through a formula delivered through a naso-gastric tube for a period of time. In some cases, if growth is not achieved with additional nutrition and Crohns medications to reduce inflammation, the addition of human growth hormone may be helpful.
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Treatment

February 2023
Q: I was diagnosed with UC a few months ago. I was put on Uceris then Stelara. I have been in remission since I started the Uceris and am tapering off. I have also been recently diagnosed with inappropriate sinus tachycardia (fast resting heart rate), which seemed to start with the UC symptoms. The cardiologist is not worried about it, but cannot explain why it is happening. I have seen that UC can cause a fast heart rate. Is this true? Should it get better if the UC gets better?
A: Sinus tachycardia can occur due to several different causes and typically is considered a response to some underlying process. These can include infections, dehydration, anemia, low blood oxygen saturation, heart disease, lung disease, pain, anxiety ingestion of stimulants, to name a few. Several of these etiologies can occur in the setting of UC, so it is important to work with your doctor to investigate and possibly address these, before a diagnosis of inappropriate sinus tachycardia is made, which is an unusual condition.
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Rajesh Shah, MD
Gastroenterologist
July 2022
Q: After being diagnosed with Ulcerative Colitis in Oct 2021, My gastroenterologist put me on Uceris (Corticosteroid) and Lialda. I felt good with no active symptoms for 3 months. I started weaning off Uceris after that and quickly saw my symptoms come back (mainly diarrhea and blood in stool). After starting and weaning off Uceric again, my doctor wants to put me on Imuran or biologics(Humira) since I cannot achieve remission consistently. Do you have a recommendation for first time use?
A: I agree with advancing treatment to biologics or immunomodulators if there are active symptoms despite mesalamine, but I encourage you to a. Verify objective active inflammation with stool calprotectin and/or flexible sigmoidoscopy. b. Have a comprehensive discussion of ALL your medication options (what you listed are only a couple of options - besides azathioprine/adalimumab examples of other options are infliximab, vedolizumab, and ustekinumab). c. come to a shared - decision with your doctor about the best treatment for your UC.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
July 2022
Q: I have been taking Humira for a year and a half. Since starting the drug, I have had scalp psoriasis. Now, after a year and a half I'm starting to develop the same reaction. I have hives that come and go in different areas as well as some skin inflammation and after my last injection my lips ballooned until I took some Benadryl. My question is, is it possible to have an allergic to a drug like Humira after taking it for so long?
A: Yes , this is entirely possible and skin reactions can occur at any time after starting a medication. Humira can cause certain kinds of psoriasis, hives, and lip swelling in some cases. In your situation, I recommend consulting with a dermatologist, possibly an allergist, as well as your GI to determine the best course of action moving forward.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
June 2022
Q: Hello, I'm 58 years old and was diagnosed with Crohn's a year ago. I've been receiving infusions of Inflectra every 8 weeks which may be helping because my calprotectin is back to normal. I will know more when I have the next capsule endoscopy. Meanwhile, I am wondering if it is normal to be very tired after the infusions. I am sleeping for hours and don't feel like I can do anything for a couple of days.
A: I agree with your work up to make certain first that the disease is in complete remission and it’s not active disease and inflammation causing your symptoms. Another suggestion could be to determine if you are getting any pre-medications with your infusions such as Benadryl which can cause fatigue and discussing with your providers if there is a -non-drowsy option you could use for premedication instead. Lastly, I would check to see if your vitamin levels have been checked especially your vitamin B12 levels. This is absorbed in the ileum which it seems may be the area of your Crohn’s disease and can commonly be low in Crohn’s patients. Low B12 is associated with fatigue and repletion of this can help energy levels. Additionally, making sure iron levels and vitamin D are replete are also critical. Crohn’s disease has been associated with a chronic fatigue even when in remission that can affect certain people. There is ongoing research in this field to better understand the causes and therefore formulate better therapies to treat it. This is a diagnosis of exclusion and would explore other diagnoses first including checking in with your primary care doctor to make sure other organ systems are checked such as thyroid. One method that helps patients is to increase exercise to 5 times a week for at least 30 minutes. This tends to increase energy.
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Alyssa Parian, MD
Co-Clinical Director of Gastroenterology & Hepatology at Johns Hopkins School of Medicine
June 2022
Q: I recently was diagnosed with ulcerative proctitis, a more mild form of ulcerative colitis. I went to see my doctor after having consistent blood in my stool but no other symptoms. I had a colonoscopy done back in September 2021 and was diagnosed with ulcerative proctitis. I was prescribed 1000mg mesalamine suppositories. I have been searching for alternative, natural treatments for my condition as I would prefer to not be on medication. Is it possible to treat my condition without medication?
A: Treatment decisions still are made on a personalized basis. Some of my proctitis patients can go on as-needed therapy, but if you are having consistent blood in the stool, no one wants that for you, and generally speaking, the risks of undertreated inflammation is much higher than any drug that you may take. However, I would recommend speaking to your physician.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
February 2022
Q: Hello. I am diagnosed with UC. I have been in an active flare for over year. My doctor wants to put me on a biological since I can not get in remission. He left the choice up to me. Do you have a recommendation for first time use?I have narrowed it down to Humira or Entyvio.
A: This really is more of a personalized decision, and depends not only on your colitis, but perhaps other problems you may have related to your colitis (ex. Arthritis or other conditions outside of the bowels). Both, however, are reasonable choices, and both are better than being on steroids long term or being in a flare all year.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
February 2022
Q: I have been on Humira for years, I have had the shots and booster for Covid. I haven't had problems till I came down with Covid before Christmas. I had 3 rounds of antibiotics and 3 rounds of steroids, monoclonal antibody treatment. Covid seems to be gone but has settled in my lungs, throat sinus, headaches. Now on another round of antibiotic and inhaler and cough meds. I postponed my Humira injections, worried to go back on because of this, advice please.
A: I’m sorry to hear that. Certainly you should talk to your lung doctor about the safety of your biologics in the setting of COVID. However, generally speaking, we do not think that your risk of getting sicker with COVID is not increased on humira.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
February 2022
Q: My son was diagnosed 10 mo ago w/ Crohn's - pretty severe inflammation but all in the bottom third of his colon. No strictures. Stelara was unsuccessful. Also tried Prednisone as well as Budesonide on top. He's trying Entyvio next. We want to avoid immunomodulators since there's lymphoma in the family, and we're even concerned about anti-TNFs. The statistics for biologics in terms of how often they are successful look bleak. I'm wondering how often it is that no successful treatment is found.
A: Keep in mind that statistics from clinical trials often set a high bar for success, so while the numbers may look bad, most biologics do help with at least an improvement in the inflammation. I think that entyvio sounds like a reasonable choice, but there are other options, including anti-TNFs. Not knowing his entire situation, lymphomas are not often genetic, so the family history, as well as the low likelihood of lymphoma would not sway my decisions. Remember that the risks for unchecked inflammation and chronic steroids in his Crohn’s is almost always higher. I would recommend further conversations with his doctor.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
December 2021
Q: I am 53 yr old male with Crohn’s disease over 20 years ago. Had remicade 8 years ago, surgery to resection intestines over 20 years ago. started Inflectra. Been going to ER every two weeks now for past 2months. Having very bad stomach pains and can’t use the toilet after eating.. this just started happening two months ago! food is just sitting in my stomach and won’t move. When I get to ER they give me steroid and pain meds, in a couple hours I’m like new man! What could be wrong?
A: I am sorry that you have had to visit emergency room so often. I would suggest discussing with your GI doctor and getting a full re-evaluation with him/her. It seems that you improve with steroids which goes in favor of Crohn’s rather than constipation.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: My 17yo daughter was diagnosed with Crohn's 11 months ago. Currently being treated with Humira (since July). The last 3 1/2 months she has had several bouts with throat swollen glands. They are visibly swollen on the outside and painful to touch and painful inside. ENT thinks it is related to Crohns.GI specialist said he never heard of that. Overtime, the antibiotics do "work" but then 2 to 3 weeks later the swollen glands return.
A: I am sorry to hear that your daughter is having problems with swollen glands. Is her Crohn’s is under control? I have seen some children develop swollen glands on Humira and some of the considerations are: check Humira levels and if it is too high, consider titrating the dose. Discuss with your doctor if she should be seen by ENT and whether she needs an immunology evaluation.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
December 2021
Q: My granddaughter was diagnosed with crohns 3 years ago. She had to have a small section of her intestines removed. She has been on remicade and was doing good until her body was being covered with red blisters. Her head has such terrible psoriasis she has patches of bald spots and now has these lumps filled with pus. They switched her to Stelara and says this will clear up. How long will it take she is 16 and not happy.
A: I am sorry that your granddaughter has to go through this problem. We all realize that body image is very important at this age. Please reassure her that her psoriasis is very likely to resolve completely. It may take 4-6 months. I also recommend discussing with your doctor about seeing a dermatologist.
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Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: I am a 62 year old female diagnosed in Nov 2019 with Crohn's disease. Initial treatments included prednisone, Pentasa and then Remicade infusions in May 2020. Had a bowel resection in October 2020. In July 2021 had a reaction during Remicade infusion so my doctor started me on Stelara in August 2021. November labs have the highest Calprotectin level ever, and CT scan shows new strictures developing. How long does it take for Stelara to have an effect? Or is this a reaction to Stelara?
A: I am sorry to hear that you aren’t feeling well. Sounds like Remicade was working fairly well for you however it was complicated by an infusion reaction (which we know can happen but is rare). If you are having progression of your disease on the Stelara it might be that it is too soon in the treatment course or you are under medicated, what that means is that you might benefit from escalation of therapy, but this would need to be discussed with your treating provider. They could see if they can get approval for every 4 week dosing or repeat IV loading dose, and if no improvement within the next 2-3 months then consider going back to anti-TNF therapy class with Humira and strongly consider combination therapy with immunomodulator (azathioprine or methotrexate). If you are having significant symptoms now or they are concerned about severity of inflammation they can trial short course of steroid (budesonide vs. prednisone).
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Jami Kinnucan, MD
Assistant Professor
November 2021
Q: Hi, I am a 28 year old Crohn's patient dealing with ongoing fistulizing perianal complications over the years. I have tried just about every biological drug out there (besides cimzia). But the fistulas have never cleared up and just branch further more. This was initially caused by having a resection after having an ostomy for 7 years, and the answer was to put the ostomy back to divert path of stool away from the fistula tracts. However, 7 years have gone by and there's still constant drainage.
A: This is a tough situation that requires close multidisciplinary care with your colorectal surgeon and gastroenterologist. The first step is to assess the degree of activity of the perianal fistulas as well as the intestinal disease (ie how much Crohn’s disease activity is going on in the small bowel and colon). This would involve getting an MRI pelvis to really examine the perianal area for fistula activity and abscess (sometimes with an MR enterography to look at the small bowel for activity) and a colonoscopy. If there is still quite a bit of activity despite diverting the stool, then the reality is that you may need to have a completion colectomy with permanent ileostomy especially if you have been on so many medications without benefit. If you haven’t been referred to a major IBD center for a consultation with an IBD specialist and IBD colorectal surgeon, we would strongly recommend it as this is a complex case. It is important to advocate for additional opinions – if there is consensus across the board, then that is helpful for decision making, but sometimes a fresh set of eyes can evaluate the situation and potentially identify another option. However, in truth, a surgery does seem like it may be the safest, most effective approach – remember, surgery is not a failure, it is an important treatment to help regain quality of life, control inflammation, and decrease risks of treatments that are not working.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: I'm on mesalamine for crohn's. I've had polyps removed in the past. I battled uveitis the past year and my last colonoscopy showed 2 deep ulcers. One in the colon and a smaller one in the small intestine. I did not take the medication faithfully since I don't experience much pain. Would staying on mesalamine faithfully or at a higher dose help heal the ulcers? Would a bland diet help in the healing?
A: Mesalamines for Crohn’s have limited utility. The deep ulcers usually reach below the mucosa (the inner layer of the colon) but the mesalamines are solely mucosal agents. In my opinion, Crohn’s patients need biologics for optimal management. This is more important than a bland diet. I would stop the mesalamine and try a biologic to prevent uveitis recurrence and ideally heal the ulcers as well.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I am scheduled to have a laparoscopic small bowel resection to treat a fibrotic stricture. I've been dealing with constipation, bloating, sometimes severe abdominal cramping. I'm curious, assuming the surgery goes well, how much better should I expect to feel once I recover?
A: If your stricture is the cause to your symptoms then after the recovery period you should have improvement in those symptoms. Depending how much small bowel they have to resect and whether it involves the ileocecal valve and they have to resect that as well. Some people after resection will have increasing stool frequency (diarrhea) which is thought to be due to bile acid malabsorption and can be treated with bile acid sequestrant therapy.
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Jami Kinnucan, MD
Assistant Professor
August 2021
Q: I was diagnosed with mild to severe Crohns in the small bowel in 2004. I have been on Humira since 2005 but lately it seems like it isn't controlling the symptoms like it was at first. Often I am having symptoms the day after injecting the Humira. Is is possible that a medication stopped working, requiring a change in meds?
A: Yes, this is entirely possible. There are experts who think the average lifespan of a biologic in most patients is 2-3 years, so this is already very long on Humira. Your doctor should check your Humira level and esp your antibodies to Humira, as it is possible that you developed these while taking this medication. If this is the case, we can occ increase the Humira dose but more often we end up switching the drug altogether. The good news is that there are more options since 2004 and the injections are by and large less frequent.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I have been on biologics for over 20 years, mostly Remicade. I have suffered from allergies (environmental) my whole life. Today I just had allergy tests and tested negative for everything. This is the 2nd time this has happened in the past 20 years, even though I know I have allergies. Could this be a side effect of a biologic? I suffer from chronic sinus issues and infections, which are very common with biologics.
A: Treatment with Remicade isn’t associated with increase in allergies, or at least hasn’t been reported. I would work closely with allergist regarding what could be causing your allergy symptoms (allergic rhinitis is a common cause). However chronic sinusitis should be evaluated with ENT and consider imaging as this could be due to sinus polyps/sinus obstruction and can be treated. Anti-TNF therapies have been associated with rare risk for chronic sinusitis. We have to weigh the risks and benefits of therapy, sometimes if patients have elevated Remicade levels we can reduce the dosing/frequency and improve some of these rare complications of therapy.
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Jami Kinnucan, MD
Assistant Professor
June 2021
Q: I am getting ready to have another colonoscopy. I know that the split prep is typical. However, I am not willing to wake up in the middle of the night. I have two young children and the idea of being up more than I need to in the middle of the night is enough to make me cancel my colonoscopy (since I have no way to catch up on rest). I know that there are alternate schedules since I have done them in the past. What are some prep schedules that would not require me to be up at night?
A: Studies have shown that the split prep is more effective and providers a cleaner colon. The challenge is that almost any prep will have you waking up at night due to starting at 5pm and the colon getting moving early evening and likely throughout the evening. I think if you have concerns about your prep and timing, work with your ordering provider to see if you can arrange alternative schedule. Ie last colonoscopy of the day and doing alternative prep that still work meet requirements for NPO status.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
June 2021
Q: To get a UC flare under control, my doctor prescribed me prednisone, in a stronger and longer dosage than I've taken before. I was on 40 mg for 3 weeks, and through the tapering process am now at 30 mg. Two weeks ago at the 35 dose level, I started feeling funky -- very foggy and lightheaded, like I could not focus on anything. I still am experiencing this, with a bit of head pressure. Is this normal and due to the steroids? Is there anything I can do to mitigate these side effects?
A: Prednisone/steroids can make some people feel different/off. However if you are having any specific localizing symptoms like a headache or pressure I would recommend evaluation with a medical provider to do an examination and exclude other causes to your symptoms. It is challenging as there is really no way to mitigate the effects of steroids other than decreasing the dose or not taking them. Another consideration could be using a more gut selective steroid like budesonide-MMX (Uceris) or budesonide (Entocort)
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Karlee Ausk, MD
associate director of the Swedish IBD Center
June 2021
Q: I have had Crohn’s disease since 1993 and a few years ago after my second bowel resection, my GI doctor started me on Entyvio infusions and I have achieved remission which I am so grateful. My issue is with my frequent and urgent diarrhea/watery bowels and my work place. Imodium, diet changes and specialized medication have been used without success. The most successful treatment was a two week antibiotic Rx but nothing since then. I am miserable at work and in need of advice.
A: Congrats on achieving remission! I assume when you say remission they have either done stool testing, imaging with CT or MRI or a colonoscopy/endoscopy. If that is the case and you do not have any active inflammation then I suspect that your diarrhea might be due to a condition called bile acid malabsorption. Bile acids (made in the liver and stored in the gallbladder) are released when you eat and are typically reabsorbed in the terminal ileum (where I suspect you have had surgery several times). If you are missing your terminal ileum or a portion of it you get bile acid malabsorption which leads to diarrhea, bloating and cramping. We have medications called bile acid binders that can improve these symptoms dramatically, you should discuss this with your primary GI provider. Another possible cause of diarrhea that can respond to antibiotics would be small intestinal bacterial overgrowth and that typically responds well to antibiotics.
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Jami Kinnucan, MD
Assistant Professor
May 2021
Q: I am a 52-year-old male who has been suffering from IBD for more than two years. I have been taking mesalamine since then and also have been taking steroid (prednisone) almost fifty percent of the time to control flareup. Recently I came across some research papers that showed direct link between Vitamin D3 and IBD. My current vitamin D level is borderline at 30 nmol/L. Do you think increasing the level to 75 by taking high dosage of vitamin D3 would help to curb the auto immune disease?
A: While there is some data that Vitamin D3 may be associated with IBD, there is not yet strong data that increasing your vitamin D to high level you have mentioned will be beneficial. The goal of IBD treatment is to be in a stable, steroid free remission. If you are requiring steroids 50% of the time, this is a sign that the medication you are taking is not working, and either the dose may need to be adjusted, or a new medication is needed. Steroids are the medications associated with the most risks and side effects in IBD treatment, and should be avoided as much as possible.
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Sushila Dalal, MD
Assistant Professor of Medicine
May 2021
Q: What antibiotics are best for IBD patients for conditions like sinus infections. Are there particular antibiotics that should be avoided by IBD patients? Should probiotics be taken when you are on an antibiotic?
A: Antibiotics can cause diarrhea by disrupting the normal bacterial community in the intestine. One of the most common ways that antibiotics can cause diarrhea is through increasing susceptibility to C difficile infection. The classes of antibiotics that have the highest association with C diff infection risk are fluroquinolones, Clindamycin, Penicillins, Cephalosporins, and Carbapenems. There is low quality evidence for probiotics. There may be some benefit to taking probiotics such as Saccharyces boulardii, the combination of L acidophilus and L casei, the combination of L acidophilus, L delbrueckii bulgaricus, and B bifidum, or the combination of L acidophilus, L delbrueckii bulgaricus, B bifidum, and S salivarius thermophilus.
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Sushila Dalal, MD
Assistant Professor of Medicine
May 2021
Q: I'm 30 and I was diagnosed with Crohn's disease last year. I've been suffering new symptoms between infusions. Is it normal for the arthritis associated with Crohn's to be so excruciating? I have trouble gripping a doorknob at times. Also, is nerve hypersensitivity also associated with Crohn's? I just need to know what issues to take to my gastroenterologist and what to discuss with other providers.
A: Unfortunately, arthritis is associated with Crohn’s disease and ulcerative colitis, and can be quite painful. New arthritis symptoms should definitely be discussed with your provider so that she or he can determine whether the symptoms are due to ongoing bowel inflammation, medication side effects, or potentially simply share the same underlying genetic risk as IBD. Some IBD medications are better than others at treating arthritis, and medication adjustments may be needed, or medications may need to be added in order to get the arthritis under control. New nerve symptoms should also be discussed with your IBD provider. Nerve symptoms may be related to vitamin deficiencies that can occur with IBD, or possible medication side effects. It is also best to bring up any new symptoms so that your provider can you let you know if he or she thinks that they may be related to your underlying condition or treatment or not.
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Sushila Dalal, MD
Assistant Professor of Medicine
May 2021
Q: I am 36 and was recently diagnosed with UC. I take medication for chronic pain syndrome, will this affect my UC ? If so, should I discuss with my gastroenterologist when I get my new medication for UC? And how should I go about this discussion?
A: Discussing any medications that you are taking, whether prescribed, over the counter, or supplements is important in order to make sure there are no interactions with your other medications and that the medications that you are on do not affect your IBD symptoms.
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Sushila Dalal, MD
Assistant Professor of Medicine
April 2021
Q: I have been on Remicade/Inflectra for 19 years. I receive infusions every 8 weeks along with blood draws as necessary. Because of so many years of this (and maybe because of my age - 64), my veins can be difficult to access. I only have 2 that the clinic seems to be able to use. I am considering a port. My GI is okay with it but I am still on the fence. What are the pros and cons of a port?
A: Pros of a port would be easy access for your infusion nurses, less pain as well less anxiety for you every time you have to think of getting a medication that has kept you well for 19 years. You would also be able to get your labs drawn through the port. Some patients also like having both arms free during treatment. It also would help preserve the veins you do have. Cons would include the risk of infection, which could be severe. This is my greatest concern for patients. Ports also do need upkeep and patients who are vigilant about monitoring for infection or complications: they can malfunction and are susceptible to blood clots and may require replacement. Some patients still get soreness around the site after treatments, not all nurses can access ports, and the port is visible and juts out of the skin, and can be bumped when patients are particularly active. This is a personal decision to be made with joint decision making with your physician. In the meantime, make sure you are particularly well hydrated before you arrive for your infusions, not just the morning of but the whole day before. Identify nurses who have been successful in accessing your veins in the past.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I was diagnosed with a mild case of Crohns 6 months ago. My doctor tells me that biologics are the only treatment to achieve long-term remission. I'm very concerned about having Stelara in my body for the rest of my life. I'm told that this is the treatment for me. Are there are any other non-biologic drugs that could help me achieve remission, or if dietary changes can achieve the same effect.
A: The details of your case are best known by your primary gastroenterologist. There are various types of medications for Crohn’s. Biologics, for patients who have mild to moderate disease and depending on their risk for progression, in terms of getting patients into remission and keeping them there have the strongest data and best safety records compared to other available non-biologic medications. What I tell all my patients is that you will be on Stelara “Forever For Today” – what I mean by that is that if the medication works we would keep you on it for as long as it works. If the medication does not work or stops working, we do not keep you on it forever. If a new treatment arrives which would be better suited to you, you would be switch you. In short, from the information we have at this time we would hope and wish that we can keep you on this medication that is very effective with a great safety record. The concern about having a medication for a lifetime is understandable. However, at this time there is no cure for Crohn’s and we know that the majority of patients need to be on lifelong medication. There is a dysregulation in your immune system pertaining to your gut, and unfortunately we need to use medications to help regulate that for you. While some dietary interventions have helped patients (less process food diets, Mediterranean type diets), we do not yet have evidence that diet alone can control infection in the long term.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I have been on Entyvio for a year now and have experienced total remission from my ulcerative colitis symptoms. However, since starting the medication I have had nonstop bloating. I have tried countless treatments, including medication, low fodmap diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering that the bloating started around the time I started my infusions, could this be a side effect of the Entyvio?
A: Bloating is not a recognized side effect of Entyvio, though every patient is different and every patient’s response to a medication may be unique. It sounds as if you have explored several causes of bloating other than the medication and not found relief. There may be many causes of bloating, including IBS to which patients with IBD are at risk. Celiac disease, lactose intolerance, small bowel bacterial overgrowth and medications are all possible causes. Is it possible that you changed your dietary habits since feeling better from ulcerative colitis standpoint? Has your small bowel been evaluated? Hormonal changes can also impact bloating. If not causes are found, biofeedback can be considered and has been shown to decrease distension.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I am currently on a biologic (infliximab)regimen for UC. I have the second COVID vaccine shot coming up soon. Two days after the vaccine, I am scheduled for my biologic infusion. Is this safe? Will the vaccine so closely administered adversely affect the effectiveness of either? Should I postpone my infusion?
A: These are all good questions. There are no consensus recommendations on spacing our the COVID vaccine with infusions. I advise my patients to leave at least 3 days between the vaccine and an infusion to better decipher if one or the other is causing new symptoms. Three days is generally enough time for any symptoms from the vaccine to resolve. There is nothing to indicate that postponing the infliximab infusion will be helpful for the vaccine. In fact, it may put you at risk for a flare of your UC. We do not yet know if medications like infliximab blunt the effects of the vaccine but this is an active area of study. I advise my patients to get the vaccine and continue their therapies as scheduled until more information is available
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have recently been diagnosed with small bowel Cohn's. A second colonoscopy (after CT) revealed chronic active ileitis. There is inflammation also narrowing of the small intestine at that area. The Dr recommends Humira but after reading results of others, I am afraid of it. I am considering Entyvio over Humira because I read that it has a higher safety profile. How do I decide on medication?
A: The decision on the “right medication” is a very common scenario. The best therapy for a specific person with Crohn’s disease is going to be based on several different factors. Therefore, it may be different for you versus someone else with Crohn’s disease. I would discuss the risks and benefits of each of the therapies being considered with your gastroenterologist and together, determine the best option for you.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2021
Q: I get Remicade infusions every 8 weeks for Crohn's. I will soon be eligible to get a COVID 19 vaccination. I need to know whether it is necessary to time the shot around my Remicade. I previously thought vaccinations had to be at least 2 weeks before or after Remicade, but I recently read that this is not necessary. I am anxious to get the vaccine and am hoping for as little delay as possible.
A: I have been telling my patients to take the COVID vaccine whenever they can get it, irrespective of where they are in the infusion cycle. This is because there is no data on taking the vaccine on immunosuppression and the vaccine availability is limited. My theory on this is that there is at all times a minimum of Remicade in your body, which slightly decreases your body’s ability to develop antibodies to COVID. However, there is no data that more Remicade inhibits the antibody rate more.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with mild to moderate Ulcerative Colitis a year and 6 months ago. I have been taking 1200 mg of mesalamine with good results but lately I had been having more frequent bowl movements and with what felt like stomach spasms. I went to my GI who ordered bloodwork along with stool and urine tests and the results were all normal. He prescribed digestive enzymes to take with along with the other med and the stomach spasms have stopped. Are these in common use with UC?
A: Nope, digestive enzymes (I assume you mean pancreatic enzymes?) are not common. You are likely underdosed on the mesalamine, the maintenance dose is more than 2,000 mg mesalamine a day and the flare dose is more than 4,000 mg a day.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: Six months ago I had Covid-19 and now have the antibodies. My UC is in remission and I take mesalamine for it. I was previously on 6mp until I contracted Covid and then stopped. Is it now safe for me to get the COVID vaccine or should I wait until more information is available about the effects on individuals with auto-immune disease or until I no longer have antibodies?
A: It is safe to get the vaccine. I am telling even people on dual immunosuppression to take it. You are basically on no immune medication, so you are like the general population that the vaccine trials were done on, except for your IBD which is in remission. We don’t know how long the infection antibodies will last, so doctors in the hospital who had COVID are still taking the vaccine, because we believe it’ll protect them from a bad infection.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2021
Q: I was diagnosed with Microscopic Lymphocytic Colitis in April 2018. It is like Budesonide works well if I stay on it. My GI doctor's keep moving me on and off different treatments and none of them seem to work. Is MLC an IBD? Is MLC an autoimmune disease? Is there a standard treatment for MLC and where can I get more information on this condition?
A: Budesonide is a very effective treatment for microscopic colitis. Microscopic colitis has 2 subtypes, collagenous and lymphocytic colitis. Yes, this is a type of inflammatory bowel disease but generally has a good prognosis in that it does not increase colon cancer risk like ulcerative colitis can. The cause of microscopic colitis is unknown, but the immune system is definitely involved ast is is an inflammatory condition. Some microscopic colitis can be triggered by certain medications (like NSAIDS, acid suppressants, antidepressants), so I recommend a thorough review of your medication list with your GI physician. Budesonide is the most effective treatment for microscopic colitis, even though it can also be treated with cholestyramine and bismuth. If there is no response to budesonide, other conditions/problems should be considered and a work-up for other causes such as food intolerances and celiac disease initiated. For certain refractory cases of microscopic colitis, the use of medications normally used for Crohn’s and ulcerative colitis like biologic therapies and immunomodulators may be needed. Some resources for reading: https://gastro.org/guidelines/liver-diseases/the-medical-management-of-microscopic-colitis/ https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/diagnosis-treatment/drc-20351483
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 57-year-old female diagnosed with Crohn's November 2014. I take Humira weekly injections. I suffer from anal bleeding and horrific burning in my belly, four out of five days a week. Can these symptoms be side effects of the disease, the medication or something else? Is there something that can be done to eliminate these side effects?
A: Rectal bleeding and burning in the abdomen are not side effects of the medication humira itself, however, they could be a flare of Crohn’s disease itself or a complication of Crohn’s (such as a stricture, partial bowel obstruction, abscess). The symptoms need to be evaluated with endoscopy/colonoscopy or imaging studies. They could mean that the humira is not working well for your Crohn’s or that your medication or treatment needs to be adjusted.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I’m currently on stelara every 8 weeks which is working well for me, however I am also 19 weeks pregnant. My next injection will be when I’m 22 weeks which is fine, but the following will be when I’m 30 weeks and in the third trimester, is it still safe to take this injection at 30 weeks and then stop treatment? I may be induced at 39 weeks so would one at 38 weeks would be out of the question?
A: Keeping the inflammatory bowel disease under control is the most important goal in pregnancy. It is safe to take the injection at 30 weeks, but waiting one week to take the 38-week dose seems reasonable given that it’s possibly very close to your delivery induction date. I would recommend taking that dose immediately after delivery. That said, if your IBD is active, or you tend to flare easily, the dose does not have to be held or changed. As always, involving your GI and OB physicians is key as they are familiar with the details /severity of your IBD.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I have recently been diagnosed with Crohn's and have started Humira. I know that it will take several weeks to see any changes. In the meantime, I have had a flare-up with symptoms lasting more than 7 days. I don't have a lot of diarrhea; however, I do get a lot of burning and 'gurgling' (sounds like a coffee pot percolating) in my stomach. I take Pepcid, which makes the burning feel better. Is it okay to take an antacid with Humira? What is the gurgling?
A: Yes, it is okay to take antacids with humira. Gurgling is a very nonspecific symptom of feeling food or gas go through your GI tract It can be associated with inflammation, narrowing of the intestine, food intolerances like lactose intolerance, bacterial overgrowth or gut sensitivity Please contact your gastroenterology physician becasue as a new humira patient, you may need to take a short course of a steroid (like prednisone or budesonide) if the symptoms are bothersome while the humira takes effect.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 39-year old male and was diagnosed 6 years ago with left sided ulcerative colitis. The affected area remains at the last 25 cm of the colon. I take mesalamine and rowasa enemas. I find myself with mild flares every 6 - 12 months. I use Uceris to control the flares. While the flares are mild, I cannot retain long remissions. Can I do anything else to help with treatment? Moving up to the Immune Modifiers and Biologics seem to be an overkill and not sure if it is worth the risks.
A: I recommend discussing moving to a biologic therapy, perhaps considering vedolizumab which has a safer side effect/lower risk profile to prevent flares. I also recommend asking your gastroenterologist if your colon is healed on just mesalamine by mouth and the enemas. If there is still active inflammation on colonoscopy between flares it is prudent to add a biologic to achieve the goal of mucosal healing. Achieving healing of the colon can prevent further flares and minimize the risk of development of precancerous changes in the future.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2020
Q: I have Crohns and had a permanent ileostomy 10 years ago. I have been having great health with minimal issues. But lately I feel like I have flares, fatigue, stomach aches, eye inflammatory issues, more frequently. Since I have an ostomy it is not the usual bloody diarrhea flares. I am not taking any medication since my surgery. Should I be taking medication?
A: If you are not feeling well and have fatigue and stomach aches, it is important to contact your health care provider and make sure the symptoms are evaluated. Your doctor will determine whether you need blood work, imaging like a CT scan or MRI, or scopes like an upper endoscopy to look into the esophagus, stomach, and first part of the small intestine (duodenum) or ileoscopy (scope through the ileostomy) to check whether there is any inflammation that may need Crohn’s medication or to find any other cause for symptoms. Even if Crohn’s is not the cause of your symptoms, it is important to get them evaluated and find a way to manage them so that you can have the best possible quality of life.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual symptom of diarrhea but had eye inflammation a few times this year. My doctor wants to start Humira and Imuran. I am very worried about the side effects especially since these suppress the immune system. I am worried about getting cancer and other infections. Are these medications usually safe and well tolerated? Is it best to start this level of treatment even though I have mild CD?
A: Crohn’s disease in the small intestine often does not cause diarrhea, since it is the job of the colon to absorb water and create formed bowel movements. If your Crohn’s is limited to the small intestine, it makes sense that your colon is still doing its normal job of making regular, formed bowel movements. Sometimes the symptoms of small bowel Crohn’s, like bloating, or abdominal pain, can be harder to notice if they happen slowly over time. Some types of eye inflammation can be linked to bowel inflammation, and Humira is also indicated for the treatment of one type of eye inflammation called uveitis. Yes, the medications are usually safe and well tolerated. In Crohn’s disease, for reasons that we do not completely understand, your immune system is doing something it should not---it is attacking your small intestine. Humira and Imuran are meant to turn down this overactive immune response. Most patients tolerate these medications well, and your health care team will be carefully monitoring you to make sure this is the case. Risks of cancer are very low as well. There are several things you can to do help keep yourself safe and help prevent infections and cancer, which include keeping up to date on vaccinations and cancer screening. The Crohn’s and Colitis Foundation has made a checklist for the best ways to maintain your health, which can be found here: https://www.crohnscolitisfoundation.org/sites/default/files/2019-09/Health%20Maintenance%20Checklist%202019-3.pdf When your doctor makes a decision regarding the best treatment for you, the decision includes not only how active your disease is right now (thankfully mild for you), but also the risks of the disease becoming worse or developing complications in the future. Therefore, even though the disease may be mild now, it likely is important to treat it now, so that you can enter remission, and it never becomes anything more than mild.
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Sushila Dalal, MD
Assistant Professor of Medicine
October 2020
Q: My UC was diagnosed in 2009. Prior treatments include 6MP, canasa, steriods (oral and enema), Remicade. I have been on Humira 6+ years, which has managed UC and inflammatory arthritis. For the past year, have been developing chronic sores on skin which has been recently diagnosed as chronic HSV2. Dermatologist believes I will be on Valtrex indefinitely. Considering a switch to Entyvio or stopping biologic treatment. Any research specific to HSV2 and biologics?
A: Very few cases of HSV2 associated with anti-TNF biologics have been reported in medical journals. Most cases seem to have been associated with patients on multiple immunosuppressants, such as prednisone and/or 6MP or Imuran along with a medication like Humira or Remicade. Risks and benefits of your medications are important to discuss with your health care provider to come up with the best plan that may work for you. Keep in mind that stopping biologic treatment may lead to a flare of your UC or arthritis, which could lead to steroid use. Steroids are much higher risk than biologics when it comes to infectious risk. Entyvio (vedolizumab) is thought to be an intestine specific medication, and thus far, has not been associated with risk of other infections. However, Entyvio may not control arthritis and may require that a second medication be started to control the arthritis.
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Sushila Dalal, MD
Assistant Professor of Medicine
September 2020
Q: I was diagnosed with mild/moderate colitis three years ago. I’ve been on mesalamine enemas (daily) and max doses mesalamine tablets (daily) for over a year since then. I felt great for a long time, but now I have what I would guess is a flare. Could my symptoms be a reaction to the mesalamine? I read somewhere the medication can make symptoms worse and I’m not sure if over time on max dosing daily, my body may have started to react differently to the meds?
A: There are several reasons that patients might have increasing symptoms after feeling well for a period of time. Even when patients feel well they might have subclinical inflammation, and this increases the risk for clinical symptoms/relapse (flare). Most patients who experience an intolerance to mesalamine will experience early in treatment course, so I think I would look at other reasons for active symptoms. Your health care team should assess for infection as possible cause and consider other objective assessments (CRP, fecal calprotectin or possible endoscopy). If you have active symptoms but evaluation is without active disease, consider other causes for symptoms. If you have active inflammation, the location of the inflammation will help your team guide therapy.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: I am 19 and was recently diagnosed with ulcerative colitis. I have a diet without allergens, glutenfree, and low fiber. I already tried steroids, I'm taking pentasa (enema and granules) and starting ozone therapy, but I'm still in the active phase, in which I have been almost 4 months. how long is normal to be in the active phase? if ozone therapy does not work for me either, what treatment will it be next?
A: First I think that active symptoms/inflammation x 4 months is too long. If you did not have a response to steroids that raises a concern for more severe disease and that mesalamine therapy (Pentasa) is probably not the optimal choice of therapy (only indicated for mild-moderate inflammation and not indicated in steroid refractory cases). Ozone therapy has been studied in limited number of patients and has minimal data in the use in IBD. The study was done with mild-moderate disease taking sulfasalazine, the study done in 2010 looked at outcomes/improvement by both symptoms and endoscopy at 4 weeks. I would say at most I would give this regimen 4 weeks, however ensure you are under the care of an IBD specialist who has done a thorough assessment for other possible causes for a prolonged flare.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: I was diagnosed with lymphocytic colitis this year at 23. My doctor is a bit puzzled as I guess I am young for this form of colitis, and I’m not on any daily medications that have been known to lead to it. I was just curious if there are any other potential causes I should bring up in my next appointment. I was also interested if, without an exact cause, if this is likely to be something, I will have to consider long-term medication for.
A: We are starting to see lymphocytic colitis (a form of microscopic colitis) in a younger population than previously described. If you are not taking an acid suppressing therapy (PPI) or NSAID which are the more common associated therapies but not required for the diagnosis. In addition we see this more commonly in those patients who smoke cigarettes. Patients with microscopic colitis are more likely to have a diagnosis of celiac disease, it would be important to have assessment for this as well. Some patients do require long-term medication, it depends on how you respond to initial course of treatment. My experience with my younger patients diagnosed with microscopic colitis is that they respond well to treatment but often require a maintenance (longer term) medication to continue to stay well.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: My son has colitis he has been on Infliximab for about 4 years his insurance made him switch to a bio-similar Infliximab-abda. He has had two treatments with the new medication and recently presented with two small blood clots, one in each lung. I feel the switch was the cause of the clots. Is there any research on side effect occurring in patients switched to a biosimilar after being stable on the original medication?
A: I am sorry to hear about your son’s recent complications. There have been multiple studies looking at the safety and effectiveness of biosimilar therapies like your son is on. There is no increased risk in biosimlars than that of Remicade (originator therapy). The things to consider when a patient with IBD develops new blood clots is to ensure that his inflammation is under control on his therapy and evaluation for possible hypercoagulation disorder. But based on what we know in clinical trials it would be hard to link his transition to biosimilar to new blood clots.
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Jami Kinnucan, MD
Assistant Professor
September 2020
Q: I am a 29-year-old Male, taken Humira for Crohn’s for 8 years, and just had a Small Bowel Resection in March. My GI stopped my Humira and opted for me to not restart it. She wants me to try another Biologic and after discussing the options we landed at Stelara. Is it common for one to start Stelara post-surgery after their disease slowly progressed while on Humira which lead to surgery? I cannot find any definitive information regarding my specific combination or scenario.
A: I hope that you are recovering well from surgery. It is hard to say without knowing more details of your case. If you had adequate levels of Humira (>7.5) and active disease at the time of surgery it is reasonable to consider alternative treatment options as a post-op prevention strategy. However there are times (again depending on the case) that you had surgery because the disease already resulted in scar tissue and that the surgery was not a true failure of treatment but it could be been due to progressive disease prior to Humira or subtheraputic dosing of the Humira. If you have a concern about moving forward with Stelara (which is a very effective therapy for Crohn’s disease) I would consider a formal 2nd opinion.
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Jami Kinnucan, MD
Assistant Professor
July 2020
Q: I have Crohn’s and have been on prednisone for more than 20 years. Is this normal or ok to be on this medication for so long.
A: The short answer is no. The longer answer is that prednisone is a medication that should only be taken in the very short term, and with a finite plan in place for a longer-term, safer medication to take that avoids steroid use. Long-term steroid use is wrought with side effects and is not a safe choice for treatment of inflammatory bowel disease. It is crucial to speak with your gastroenterologist to come up with a formal plan to transition you safely from steroids to a steroid-sparing medication that has been shown to benefit patients with Crohn’s disease.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with collagenous colitis (microscopic) 8 yrs. ago. I would like to know if budesonide is a successful treatment for this condition. My doctor recommended it, but I am concerned with the side effects. What is the maximum amount of time that this medication should be taken.
A: Budesonide works very well in patients with microscopic colitis, and studies pitting the medication against placebo show that those patients who took budesonide did significantly better than the placebo group. Even though budesonide is a steroid that has little systemic exposure because of how the body metabolizes it, we do not like to use budesonide in the long term, because adverse effects of long-term steroid use is not to be ignored. Generally, for microscopic colitis, the recommendation is to be on the medication for about 6-8 weeks, and then begin a taper and eventually come off the medication entirely.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with UC one month ago. I am a male in 60s and in very good physical condition - except for UC. I have taken prednisone for 4 weeks, tapering down each week from 40mg a day to 10 mg and now finished. I just started a course of mesalamine by mouth and a suppository, and it seems to be working. I’m worried about hair loss, and if there are any ways to overcome this specific side effect.
A: It’s great to hear the mesalamine is working well to treat your symtoms and the inflammation. Unfortunately, hair loss is a known potential side effect of mesalamine. It is reported to occur in <3% of patients. There are other reasons for hair loss in patients with IBD: telogen effluvium, which usually occurs in the context of active disease, nutritional deficiencies, and stress, for example. Speaking with a dermatologist about concerns of alopecia, or hair loss, may help with overcoming this problem.
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Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2020
Q: I have Crohns disease and require monthly B12 injections as I cannot absorb it through my small intestine. I'm not able to get my B12 shots during the current Covid 19 crisis because my physician’s office is only seeing very ill patients. My physician ordered a prescription B12 nasal spray, but it's not covered by my health insurance and cost is $6,000 per month. What is my best OTC, non-pill-form option for me during this time? My last B12 injection was in early February.
A: As you mentioned, some patient’s with Crohn’s disease have impaired ability to absorb vitamin B12 taken orally (whether as pills or in the diet). Therefore, monitoring of B12 levels and correction if needed will be prescribed. In general, total body stores of vitamin B12 are approximately 2-5mg with about half of that in the liver. If B12 intake stops, deficiency typically does not develop for at least 1-2 years. So, it may be reasonable to wait till your doctor is seeing patients in clinic again and then resume your prior injections. Alternatively, there are studies that showed taking high dose (1000 to 2000 mcg) oral vitamin B12 daily can still be absorbed (about 1% of what is ingested) and maintains B12 concentrations.
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Rajesh Shah, MD
Gastroenterologist
May 2020
Q: My adult niece has UC and was on prednisone for 4.5 months. Once tapered down she seemed to experience a psychotic episode. While doctors were able to mitigate the episode, they took her off of Adderall which she desperately needs to manage her day. Is it common for prednisone to lead to psychotic events (and how long they last?). What can one take in place of Adderall that won’t feed the psychosis?
A: This is an important topic and can be quite distressing to patients and families. Prednisone is an effective short-term treatment for patients with ulcerative colitis; however, a known side effect of it is psychosis. There is limited research on how often this occurs, but the data suggests <10% of patients develop psychosis, and this is more common with higher doses (>20mg daily) for a longer time period. Keep in mind, prednisone is used as a bridge to another therapy and ideally other medications will be used long term to control UC symptoms. Once stable on another medication, resuming previously used medications, such as Adderall, under the supervision of her PCP may be possible.
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Rajesh Shah, MD
Gastroenterologist
April 2020
Q: I’m 57 and have had Crohn’s in my colon for decades. I went through each of the biologics one by one until they each failed. I had a total colectomy last August and now no longer take biologics or prednisone. Two months after surgery I started having severe muscle/tendon and joint pain. Is this refractory inflammation after being on biologics? Will it go away. over time?
A: It is important to remember that Crohn’s disease can lead to inflammation anywhere along the gastrointestinal tract, from the mouth to the anus. So, despite the inflammation previously being localized to the colon, the possibility for recurrence in other areas of the GI tract should be explored. In terms of joint manifestations of Crohn’s disease, they are more common in patients with large intestine (colon) involvement. Blood tests can be checked to broadly evaluate for inflammation but can reflect both inflammation in joints as well as the intestine, so they can be of limited value. Follow up with a gastroenterologist to evaluate for recurrent Crohn’s disease and possibly a rheumatologist may be warranted.
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Rajesh Shah, MD
Gastroenterologist
March 2020
Q: I have Crohn's and began taking Remicade in 2017 with no issues. At the end of 2019 I started having pains in joint/muscle. The pain started in the thighs, moved to the knees. It moves around the body to different joints daily or every 2-3 days. It gets bad into the evenings and calms down during the day. I also have a rash around the under arms and itchy welts that appear on the torso once in a while usually the size of a golf ball. Can these symptoms be from the Crohn or medication?
A: Extraintestinal manifestations can occur in up to 25% of patients with Crohn’s. These can be rashes, joint pains or vision problems. We usually recommend working with a rheumatology and dermatologist in these cases. Sometimes, medications like Remicade can cause lupus-like reactions or even types of joint pain called “arthralgias.” Another phenomenon that may be happening is that your body is making antibodies against the Remicade in your body. This can be tested for with a standard blood test that will also check for the appropriate concentration of Remicade in the blood.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I am a 45 year old female newly diagnosed with Moderate UC on both left and right sides of my colon. My GI and I have narrowed options down to Imuran or Remicade/Humira. My main concerns are immune suppression and side effects. Can you share your experiences from your patients and input to help inform my decision? I realize treatment response and side effects are highly individualized, but I am trying to get a crowd source view of the two to help inform my decision with my doctor.
A: With the advent of improved understanding and monitoring mechanisms with the “biologic” medications like Remicade and Humira, we’re realizing these have a better safety and efficacy profile than the Imuran type medications. Make sure you attain age-appropriate vaccines, including influenza and pneumococcal series, which will help with infection risks. Between Remicade and Humira, it’s really up to the patient whether they want infusions (Remicade) every 2 months or injections (Humira) every 2 weeks. Safety and efficacy are similar in this class. Also consider Entyvio or Stelara as future options.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I was diagnosed with UC- pancolitis in Sept 2019 and given 1.5mg Apriso. This helped for a month with less BM/blood but symptoms returned after about 45 days and treatment failed. He ordered fecal calprotectin with result of over 2000 μg/mg, yes over 2000. I’ve been on prednisone for 8 weeks. My doctor recommended Entyvio but my insurance said no. How can my doctor get my health insurance to approve Entyvio bypassing step therapy of Humira/Remicade?
A: Humira or Remicade are acceptable therapies for your current situation. Please see answer posted this month for a discussion on biologics. If you absolutely want Entyvio, there are resources on the Crohn’s and Colitis Foundation Website for appeal letter samples that you can send to the insurance company or to your doctor office to use as a template.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
November 2019
Q: I have been given mesalamine enema and 4 mesalamine pills daily. It has only been one week since my diagnosis and medications, how long before I start seeing a more normal stool? Now my stool is water and sometimes droplets of blood. I am going to the bathroom about 5 times a day, this is how frequent I was going before as well.
A: Usually we give this a few weeks, but I would say that mesalamine should start to work within a few days. If it does not work, some people have the opposite effect (makes their diarrhea worse) or your colitis may just be more severe that the mesalamine is not enough. The latter is usually what happens. This is when I’d be starting to discuss potentially needing the biologic therapies if you are not doing significantly better on the mesalamine.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I was diagnosed with Crohn's colitis in 2009. After several good years on Remicade, despite maximal dosage, the drug has now failed. After about 6 months on Xeljanx, that drug has now failed as well. My GI thinks it is time for me to seriously consider colectomy. I am having a tough time with this idea. How do I decide if it is worthwhile to try Entyvio or a clinical trial. What information can you share that can help me make the best decision?
A: There are other medications that you can try. Since you responded to remicade initially, adalimumab (humira) and certolizumab (cimzia) is a choice. Keep in mind that there is vedolizumab (entyvio) and also ustekinumab (stelara), in addition to clinical trials. So, there are a lot of choices out there to consider. Surgery is reasonable to consider, depending on how sick you are, but you should talk to your doctor about other non-surgical choices above.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: My adult son has Crohn’s disease and now into his 5th year of remission on Remicade. He is 23 and has been offered a job outside of the US. He is seeking recommendations/suggestions on alternative treatment that doesn't require IV. He is seeking other options that may allow him to freely travel without infusions every 8 weeks. Any information is on the pros and cons of switching medication or other suggestions is appreciated.
A: If he is able to get Remicade outside of the US, that would be ideal. I have had patients in this scenario. Alternatively, you can switch him to Humira, which is in the same class. Finally, if he’s doing very well, you may want to consider doing a colonoscopy with your GI doctor to see if he can de-escalate off of remicade. This may or may not be appropriate as I don’t know his IBD history fully, but your doctors should be able to help you to trouble shoot this, as it’s a common scenario.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohn's and have tried several medications, and none have seemed to help. My doctor is discussing the use of a biologic treatment. What is the best way to determine which biologic treatment to use?
A: There isn’t a clear winner with the different biologics. I would say that it depends a lot on what your insurance will cover, and where your Crohn’s disease is located. If you are not doing well on the other medications, then I too would recommend biologics, and all of them would likely be better than what you are doing now. The Crohn’s and Colitis Foundation has a great web site where they discuss all of the different medications, but your doctor should hopefully steer you in the right direction.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2019
Q: What has been the success or failure of stem cell treatment for ulcerative colitis? How do I find stem cell clinical trials for the treatment of UC that are actively recruiting?
A: The data for stem cells is more common in Crohn’s disease, which overall studies have shown slight or no benefit, which is disappointing given the initial potential. I am not aware of many studies in UC. While this is still a promising field, the good news is that we so many more therapies for UC that are being tested, and we are understanding the safety issues better as well.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
October 2019
Q: I have UC and have recently been prescribed uceris rectal foam to manage a flare up. I am supposed to take the med for 2 weeks. I am also breastfeeding my newborn. Is this medication ok to take while breastfeeding?
A: Yes, it is. The absorption of uceris topical foam is minimal. Of what is absorbed, most is broken down by the liver and very little will every make it to the blood stream or the breast milk.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: How long is it safe to stay on budesonide? I have lymphocytic colitis, and every time my doctor had me taper off my symptoms came right back. Now he says I may need to stay on it indefinitely. What are other treatment options for lymphocytic colitis?
A: While the systemic steroid exposure is low, there are some adverse effects of long-term budesonide treatment, the main one being adrenal gland suppression. Some patients also experience some other steroid side effects, such as poor sugar control in diabetics or irritability. Budesonide’s use is safest when limited to 12 weeks. The return of symptoms is of course a limitation. If long-term budesonide use is planned, use should be accompanied with discussion of risks and benefits and using the minimum effective dose that controls symptoms (while we start at 9 mg, many patients can taper to 6 mg or 3 mg if remaining on the budesonide). Another option is to use intermittent recurrent courses of budesonide if able. Some other tips include discontinuing any culprit medications (such as non-steroidal anti-inflammatories), adding loperamide or cholestyramine to the regimen or adding bismuth subsalicylate. Other options (based on small case series) for long-term maintenance treatment of lymphocytic colitis are biologic agents (anti-TNF like infliximab or adalimumab) or immunomodulators (such as azathioprine).
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with ulcerative colitis in 2016. In a recent colonoscopy there was no ulcers and no inflammation found. I am presently on mesalamine, gained a lot of weight and still have 4-5 soft bowel movements a day. If I have no ulcers and inflammation why do I continue to have so many bowel movements?
A: Other causes for the frequent bowel movements could be lactose intolerance, a motility disorder in the GI tract, or an infection, or celiac disease, among others. A work-up could be started especially if this affects your quality of life. Sometimes there is some scarring in the recovered colon and that could result in continued frequent bowel movements.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My wife and I are trying to conceive. I have UC, have been on mesalamine 4.8g for years with no flares. Got a flare about 2 1/2 months ago and have been taking prednisone 40mg to help. I was told I will need to switch to a biologic in coming weeks. Is there any issue with trying to conceive while taking the prednisone and soon the biologic?
A: No. There are no issues in men and you can try to conceive while taking prednisone and biologics. Avoid the medications: methotrexate and sulfasalazine for 3 months as they can affect/lower sperm count. Otherwise for men, it is okay to start a biologic with the eventual goal of tapering off the prednisone soon. Women should not try to conceive in a flare due to the risks of active inflammatory bowel disease to the pregnancy.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My daughter was diagnosed 11 years ago with Crohn’s disease. She has been in remission without meds for the last five years. Recently diagnosed with recurring anterior uveitis and burning tongue. A new GI Dr and had all the tests done again and diagnosed she was diagnosed with mild to moderate Crohn’s. There was no discussion on previous meds that helped the doctor just said we treat Crohn’s from the top down now, and he wants her on adalimumab. Is top down the way of future treatment?
A: It is true, an aggressive treatment approach and starting with biologics in a top-down approach has been showed to help Crohn’s patients more than the step-up approach in moderate-severe Crohn’s. This minimizes the long-term disease complications. The choice of adaliumumab its reasonable because it is a treatment for uveitis as well as Crohn’s, however, other findings such as colonoscopy results, severity of symptoms are important in order to make this decision and estimate the risk of Crohn’s.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with Crohn's 10 years ago and on the Remicade right now. But when I have a flare ups, Pentasa works great to calm down symptoms. I asked my doctor to prescribe Pentasa and he said that this medication is absolutely NO for Crohn's (only for Colitis) according some sort of recommendations. What is the harm in taking Pentasa with my Remicade for CD if it works to reduce my symptoms?
A: Pentasa and other 5ASAs have not been showed to have a benefit in achieving remission in Crohn’s studies/clinical trials. These studies were all pooled together and still there was no benefit. While pentasa does not suppress the immune system, and is overall safety profile is good, it has side effects like nausea/headache/rash/ and other rare side effects (such as pancreatitis, pericarditis, nephritis). It is a good practice to make sure that every medicine you take is truly needed. That said, I encourage a discussion with your doctor regarding the definition, duration, and severity of flares that you experience and based on the nature and frequency of the symptoms you can together decide if additional work-up is needed to define them better. This might help guide how you treat them.
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Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
August 2019
Q: I’ve had ulcerative colitis for over 20 years. Years ago, I tried Asacol and had an allergic reaction have been told I am allergic to the main ingredient in most uc drugs. I am currently on budesonide and mercaptopurine. I was wondering if some of the new drugs in shot form are safer than steroids. I want to get off long term use of steroids and don’t know the name of the new drugs to ask for.
A: Steroids are associated with the greatest risks of infection, bone loss, and other complications related to ulcerative colitis, particularly with chronic and longstanding use. You are correct to want to taper off prednisone. IF you are steroid-dependent, then mesalamines (which include Asacol) are not likely to be the medications to keep you off steroids, especially with an adverse reaction as you have experienced. The injectable or infusion-based medications you are referring to are called biologics – these are protein-based medications that are used for people who are dependent on steroids or with moderate to severe disease. These agents can induce and maintain resmission (resolution of symptoms, ideally with healing of the colon) and provide the opportunity for people to taper off steroids. Examples include infliximab (Remicade, Renflexis, Inflectra), adalimumab (Humira, Cyltezo, Amjetiva), golimumab (Simponi), vedolizumab (Entyvio). You should discuss potential options with your IBD provider.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s last year. A year after diagnosis months I had a huge flare. My doctor has recommended Cimzia. I have begun treatment (week zero and week 2 injections complete) but looking for insights on this drug. Due the flare I am also taking prednisone. I am experiencing a lot of night sweats and fever spikes. Can these be symptoms of the prednisone or Cimzia?
A: These symptoms can be related to either continued Crohn’s disease activity, medication related adverse effects or infections. Please discuss these symptoms, especially if new since starting certolizumab pegol (Cimzia) and have a plan to assess response or non-response to the agent within 8-12 weeks of starting treatment. If you are unable to taper off prednisone or do not see notable improvements, then you and your provider should re-evaluate to see if this is the right medication and the right dosing at the right interval. If you are having any adverse reactions to the medications, then your provider also needs to be aware.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have UC for 5+ years under control/remission however had a flare up a few months ago and I’m now taking Prednisone to calm it down which is working. I would also like to try CBD oil since it supposed to help reduce for inflammation. What does the research say about the benefits of CBD with UC?
A: This is certainly an area of interest and need for further investigation. The best studies evaluated the effects of cannabis for Crohn’s disease and did not show consistent meaningful results. We do know that certain symptoms of nausea, decreased appetite, potential fatigue/pain may be improved with cannabis, but there isn’t enough evidence-based data to support the use of CBD oil as a primary treatment for ulcerative colitis.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have a long history of Crohn's disease (originally diagnosed as Ulcerative Colitis 46 years ago). In the past, I've been on Sulfasalazine, Acacol, Cimzia, Humira, Remicade. Currently I'm on Stelara every 2 months, and it's the best by far. However, the cost is prohibitive. I'm hitting a $1,000,000 lifetime health insurance benefit cap this year at age 60. Is it possible to take Stelara less often (once or twice a year) and take something cheaper in between shots?
A: Unfortunately, the data for using ustekinumab (Stelara) for Crohn’s disease is based on dosing every 8 weeks. Extending the interval longer in between injections increases your risk for loss of response, flares and potentially forming antibodies. You should discuss options to help with the costs of obtaining the ustekinumab (Stelara). There are patient assistance and savings programs that may offset some of the costs of the medication.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
June 2019
Q: I have been on infliximab for about 3 months and my hair been coming out and has become really thin. Can this be as a result or the medication or something else. What can be done to stop the hair loss?
A: Hair loss can be a rare side effect of anti TNF agents like Infliximab and it is considered a class effect. If you were very ill with nutritional deficiencies and emotional stress prior to starting Infliximab, there can be hair loss during recovery which will resolve with time. This is called Telogen effluvium is a form of diffuse, nonscarring hair loss that presents as a transient or chronic loss of hair. Hair loss in telogen effluvium occurs because of an abnormal shift in follicular cycling that leads to the premature shedding of hair. Best is to consult a dermatologist, who will be able to do further investigations to find the cause and decide on treatment options including considering discontinuing of Infliximab.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I have had the diagnosis of Crohn's Disease since 1992. In the past 10 years or so, I have had occasional iritis when my Crohn's is flaring. My GI doesn't seem to be concerned, but my optometrist is worried about using steroids too much on my eyes and that it might cause glaucoma. How concerned should I be about using steroid drops on my eyes every 3-6 months?
A: Uveitis occurs in 0.5 to 3 percent of patients with IBD. Anterior uveitis is also called iritis. Uveitis may precede diagnosis of IBD and may be associated with arthritis. It is four times more common in females as compared with males. Prompt diagnosis and therapy with topical or systemic steroid is necessary. Secondary glaucoma and rarely blindness may occur if management is delayed. The course of uveitis usually does not parallel the activity of IBD. Therefore, I would recommend you get evaluation by an ophthalmologist as soon as possible to confirm the diagnosis. I don’t know the exact risk of glaucoma related to topical steroids but likely it is low. This may be episcleritis which occurs during flare of intestinal IBD activity. Episcleritis, inflammation of the episclera, the layer directly beneath the conjunctiva, is the most common ocular manifestation of IBD, occurring in 2 to 5 percent of patients. If that’s the case and this happens every 3-6 months, that is an indication of suboptimal control of your crohn’s disease. That means your current medication regimen needs to be adjusted to better control the disease. This may require checking the drug level if you are on a biologic or consider switching to a biologic if you are not on one. Of course, infection needs to be ruled out but less likely due to repetitive nature.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed with lymphocytic colitis in December. Prescribed Urceris, (budesonide 9mg) for eight weeks, then tapered to 6mg for two weeks, and now on 3mg. All symptoms have returned and my doctor said to go back to 9mg for 12 more weeks. I'm worried about so much corticosteroid usage. Is this truly safe for such a long period of time?
A: You are taking Entocort 3 mg pills, which the effective form of budesonide for microscopic colitis (lymphocytic colitis and collagenous colitis). Uceris is the formula that is mainly released in colon and it comes as 9 mg pill. Entocort is a locally active corticosteroid that has been used in patients with microscopic colitis, a study in 2018 confirmed its efficacy compared to placebo in lymphocytic colitis. As Entocort is locally acting and its systemic side effects are less than other oral corticosteroids like prednisone. This is due to its extensive breakdown in liver resulting decrease systemic exposure. Therefore, this is the safer form steroid. Although there is symptomatic improvement in symptoms with few days of therapy complete resolution needs at least 6- 8 weeks of Entocort 9 mg daily followed by taper over 1 month. If there is relapse of symptoms during taper, 9 mg daily treatment can be extended into 12 weeks or longer before tapering. Your treatment recommendation is the standard of care. We need to also make sure to eliminate triggers such as smoking and NSAIDs use as well as infection, celiac disease, hyperthyroidism, etc. Even after elimination of other causes and triggers, about 10-20% of patients may not respond to Entocort. In these patients it may be necessary to use immunomodulators like azathioprine or biologics such as anti TNF agents (Infliximab, Adalilumab, etc)
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: Just diagnosed with moderate Crohn’s disease in small bowel with narrowing in terminal ileum. My main complaint is abdominal pain. The doctor wanted to put me on 40 mg of Prednisone for 2 weeks but I’m a chicken (ha) so I choose Entocort. It’s been 5 days and I still have horrible stomach pains and some back pain. Can I switch over to prednisone without problems?
A: Degree of response to medicatherapy of crohn’s stricture/narrowing depends on amount of active inflammation vs scarring/fibrosis. Current medical therapy is not effective against fibrosis but will decrease inflammation resulting in opening/decreasing the narrowing of your terminal ileum. Entocort 9 mg is usually very effective but you can try switching it to prednisone to see if you have better response. I would also recommend obtaining abdominal imaging such as CT enterography or MR enterography to better define the extent (more stricture event tight ones) and severity of small bowel disease. If it is moderate disease you will benefit from biologic therapy with or without immunomodulator to induce remission and maintain remission. Staying on low residue diet will also decrease your abdominal pain if it is related to sluggish passage of material through the narrow terminal ileum. If you have critical/severe narrowing with dilation of bowel before/proximal stricture, you may need surgical intervention in near future.
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Lilani Perera, MD
Gastroenterologist
May 2019
Q: I was diagnosed with Crohn’s in 1998 and then diagnosed with fistulizing Crohn's in 2000 after a major surgery. I started Remicade in 2001. It has kept me in remission and fistula free until last year. I recently became aware that for the past year I have been getting Inflectra, not Remicade. Could this change in medication contribute to the development of fistula? Is there any research about the changes patients have when switched from the original biologic to a biosimilar?
A: There are multiple studies showing equal efficacy of Inflectra to its originator Inflximab. More important question in your situation would be the adequacy of the drug level as well as presence of antibodies against the drug. I would recommend performing therapeutic drug monitoring to get this information if this has not been done before. When was the last time you had colonoscopic evaluation or abdominal imaging to objectively assess the treatment response while you were still on Infliximab? If it is few years ago, it is possible you had partial controlled disease for some time (while you were on Infliximab) prior to developing the new fistula. If this is the case as mentioned before, therapeutic drug monitoring will help you to figure out what could be the best possible therapeutic change to get your disease under control again. If you have perianal fistulizing disease, MRI of rectum will better define the disease and examination under anesthesia with seton placement will facilitate the healing with correct medical therapy.
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Lilani Perera, MD
Gastroenterologist
April 2019
Q: I have been using Remicade treatment for 5 months. I have been getting skin ulcers, or boils since beginning use of this form of treatment. These not only look nasty but are very painful. This is my third skin issue. Is this a common side effect?
A: Remicade, though very effective for the treatment of IBD, has many potential side effects, including skin side effects. Up to approximately 10% of patients, may experience some form of skin related side effects, including rashes and itching. Of the skin related issues, development of psoriasis appears to be the most common. In your case, I would recommend promptly speaking with your gastroenterologist and possibly seeing a dermatologist for further care. In mild cases of psoriasis, the Remicade is continued and topical creams are used to control the skin related side effects. In more severe cases, Remicade (and related medications) are stopped and alternative therapies are used.
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I started Azathioprine 50 mg 2x daily about 30 days ago. Last week I started experiencing stomach bloating, gas, pain between my breast and then sharp pains on left side, radiating to my back and up to my shoulder. I stopped taking the pills, called doctor and visited about pancreatitis symptoms. Is this a side effect? Should I try again? I am on Remicade every 8 weeks and the inflammation continues.
A: With azathioprine, pancreatitis is a rare, but reported side effect. This does not appear to be related to the dose of the medication, but instead an idiosyncratic occurrence. If pancreatitis was confirmed, I typically do not resume azathioprine (or 6-mercaptopurine), as the patient may have recurrent episodes. Alternatively, a growing body of studies suggests monotherapy with Remicade (and other biologic therapies) dosed adequately is as effective as combination therapy (Remicade and azathioprine). Therefore, in patients unable to take azathioprine, I typically would recommend monotherapy with a biologic, such as Remicade, and checking the drug concentration to guide dosing.
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I recently started Entyvio and realize that it will take a while for it to kick in. In the meantime, my doctor's office suggested Metamucil to help add bulk to my stool which is currently just liquid. I have always been careful to avoid too much fiber and I am concerned that the Metamucil will cause more diarrhea and not less.
A: Fiber, or said another way, dietary fiber is actually composed of 2 types of fiber, soluble and insoluble fiber. Soluble fiber, such as the psyllium found in Metamucil, dissolves completely in water and forms a gel like consistency. When ingested, this helps add bulk to stool and soften stool, so it may be recommended for both diarrhea and constipation. Insoluble fiber, which is the type of fiber found with wheat and some fruits and veggies, does not dissolve well and also adds bulk to stool, but may also have a laxative effect. When adding additional fiber to the diet, start slowly at first (perhaps ½ tablespoon initially), as some supplements may cause bloating and abdominal pain, and then increase gradually as tolerated for the desired effect. For additional information related to fiber, consider reviewing the Crohn’s and Colitis Foundation Diet and Nutrition Handout (https://www.crohnscolitisfoundation.org/assets/pdfs/diet-nutrition-2013.pdf).
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: I have Crohn’s and I just had surgery to drain an anal abscess. There was a fistula, so they placed a seton. What is the treatment for fistula? Are setons permanent? Can fistula heal with medication, like Remicade? My main concern is bowel continence.
A: Unfortunately, patients with Crohn’s disease may develop fistulizing disease around the anus, also termed peri-anal disease. This can lead to complications such as abscesses, which require prompt recognition and management. Overall, treatment of Crohn’s disease with peri-anal involvement involves close coordination between your gastroenterologist and colorectal surgeon. Once the abscess has been drained, a seton is left in place to prevent accumulation of a new abscess. In the meantime, your gastroenterologist may use a combination of therapies (including biologics and antibiotics) to gain control of the inflammation that led to formation of the fistula. Once this is controlled, the seton can be removed and your team will monitor you for improvement and closure of the fistula tract with medications. In cases where the fistula tract dose not close, then additional surgical interventions may be required, with the goal of closing the tract and preserving continence.
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Rajesh Shah, MD
Gastroenterologist
April 2019
Q: Have been taking Pentasa (mezalazine) for 30 years with no problems but am now experiencing very bad light sensitivity. Even with spf 30 cream getting extreme redness, burning, tingling and swelling. Happens even indoors when in the light. Could it be my tablets causing this?
A: Skin reactions are a rarely reported side effect of mesalamine products, including Pentasa. However, since this is a rare side effect not much has been reported. In a study from the UK, nearly 3 million prescriptions of mesalamine were written and only 14 cases of skin reactions were reported. I would review with your primary care physician and gastroenterologist all your medications, in case another medication is the culprit. If no other medication causing this side effect is found, I would discuss with your gastroenterologist alternative therapies or possibly seeing a dermatologist for further recommendations. In general, patients with IBD should practice skin care and regularly use sunscreen for protection.
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Rajesh Shah, MD
Gastroenterologist
March 2019
Q: I have had Crohn’s since 2001 and have been managing it well for 6 years with infliximab. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the medication be wearing down my immune system? Should I talk to my doctor about switching from infliximab to another drug?
A: Infliximab does suppress the immune system and, therefore, makes you more susceptible to a variety of infections (including strep throat). This immune suppression is why infliximab works against Crohn’s disease, but infections can be a side effect. However, you also mention that your Crohn’s disease is managing well with this medication. This makes stopping infliximab a complicated and individual decision. With a switch in medicine, there is a risk of a Crohn’s flare. For that reason, when infliximab is working well, I am hesitant to recommend stopping it unless it is causing side effects that the patient can not tolerate. This is where your care team comes in to help guide you through an honest discussion of the risks and benefits of continuing on this therapy versus switching to an alternative medication. Once you have all of the information, you can decide together what would be best for your individual case.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
March 2019
Q: I was diagnosed with Crohn's disease 15 years ago. Does CD affect fertility? I was also wondering if there has there been any research done about the long term use of biologics and how they can affect fertility. I’m 32 and have been on a biologic for 12 years and can not get pregnant.
A: Thank you for this great question. There have been several studies looking at fertility in Crohn’s disease and ulcerative colitis. When Crohn’s disease is in remission (no inflammation remains), there is no sign of decreased fertility. Biologic medications have also never been associated with decreased fertility. There are studies showing a decreased birth rate in Inflammatory Bowel Disease patients. However, researchers took those studies a step further and investigated the reason for the decreased birth rate. They found that the Inflammatory Bowel Disease subjects studied more frequently did not desire a pregnancy compared with the non-IBD subjects. Once they narrowed the studies to subjects who desired pregnancy, there was no decreased fertility among all groups. That said, there are a few individual situations that could impact fertility. If you have had surgery for Crohn’s disease, it is possible that adhesions (or scar tissue) could affect your fallopian tubes. If you have active Crohn’s inflammation, there could also be associated inflammation or scarring of the fallopian tubes. Finally, some medications (not biologics) have been associated with decreased sperm count in male patients – but that decreased fertility is not seen in female patients.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
March 2019
Q: I was recently dx with CD. I have inflammation in my ileum and also some scar tissue. I am torn about treatment. I cannot decide if I want to take the either HUMIRA, Remicade or another treatment. I worry about the side effects. My other option is laprascopic surgery to remove the diseased area. Surgeon said that I would have a good 10 years of normal eating and may not have to take the meds. I am looking for any information on how to proceed or that can help me make a treatment decision.
A: The question of medications versus surgery can be a common situation that arises. The right answer is often very individual depending on your situation. If the problem area in your ileum is mostly scar tissue, then medication may not be able to open it up enough to relieve your symptoms. In that case, surgery is the necessary intervention. However, if there is a large component of the area that is inflammation, then medication may be able to lead to a very significant improvement and prevent or delay any surgeries. Calming down inflammation prior to surgery often also allows the surgeon to limit the amount of intestine resected and improve your healing from a surgery. While hearing the long list of possible side effects is often alarming, it is important to remember that the risk of untreated Crohn’s disease is greater than the risks of these medications. Most people tolerate the medications very well. Finally, I would say that the course after surgery can vary greatly. Remaining off therapy for 10 years is possible, but not the most common outcome. More commonly, Crohn’s disease can begin to return and require treatment at some point after surgery. Guidelines recommend repeating a colonoscopy 6-12 months after surgery to begin monitoring for return of Crohn’s disease.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
February 2019
Q: This year will mark 10 years with ulcerative colitis. After being prescribed numerous amounts of medications with different side effects I decided to take a different approach and try things more natural. I ended up regaining control of my symptoms until recently but now I am looking into other forms of treatment other than pills. Does acupuncture help with symptoms?
A: The efficacy of alternative treatments in ulcerative colitis is a frequently asked question. Acupuncture may help patients better tolerate their ulcerative colitis symptoms, but at this point, there is no evidence that acupuncture helps decrease active intestinal inflammation. Since our goal with any treatment (i.e., remission) in ulcerative colitis is to decrease active intestinal inflammation in addition to eliminating symptoms, acupuncture on its own may not achieve the results we would like. However, if combined with other therapies that have been studied and found to cause remission in ulcerative colitis, acupuncture may be a better choice.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I’ve had Crohn’s since 2001 and have been managing it well for 6 years with Remicade. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the Remicade be wearing down my immune system? Should I talk to my doctor about switching from Remicade to another drug?
A: This is an interesting question. Medications such as infliximab (Remicade) are associated with a higher risk of bacterial infections like those that cause strep throat. As you suggested, this is because infliximab decreases the immune systems’ ability to fight off infections. If the diagnosis of strep throat has been made adequately on each occasion and you have been on appropriate antibiotics in each case, then it may be time to speak to your gastroenterologist about the role infliximab may be playing in the infections. At that point, your gastroenterologist can decide on the next best step for the treatment of the Crohn’s disease.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I have recently been diagnosed with Crohn’s disease involving distal ileum, few aphthous ulcers in mid and distal small bowel. Does Pentasa sachets works for Crohn’s when small bowel is involved? There are contradictory statements by doctors; some say it the slow release Pentasa works and some says it is not effective. Please clarify.
A: This is a good question. Medications like Pentasa generally are not effective for Crohn’s disease regardless of its location. The release mechanism of drugs like Pentasa seems to make little difference in its effectiveness.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I was recently diagnosed with Crohn’s Disease. My symptoms right now are severe stomach pain several times a week. My GI first prescribed budesonide but the side effects were bad so he has mentioned Remicade/Humira as another option. He is hesitating and wants to redo pill cam study before starting. Will the disease always at some point get worse if I am not on any medication?
A: Thanks for your question. Generally, the chances of your disease worsening are based on the severity of your disease at diagnosis. The severity of your disease is based on your clinical symptoms, labs, imaging, and the endoscopic evaluation. For instance, if you had mild Crohn’s disease at diagnosis, the risk of the disease progressing is lower than if you had moderate or severe Crohn’s disease at diagnosis. Your GI can help determine where you fall in the mild, moderate, and severe range. It is very reasonable to reevaluate your disease as your new GI has suggested prior to starting medications like infliximab/adalimumab (aka Remicade/Humira).
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2019
Q: I am 24 years old. I was diagnosed with crohns when I was 23. I’ve been on remicade, after my 5th infusion I had blood test done and it came back with my liver having high enzymes level. I was wondering if it’s the remicade? I hope not since I feel great being on it. I just don’t know what could cause it.
A: Remicade can cause increase in liver enzymes. However, they can also be increased from other causes: inflammation, drinking the night before the blood test was taken, other medications. If you really like how you feel on Remicade I would: a) repeat the liver enzymes b) check the Remicade level. If the liver enzymes are back to normal, which is often the case, I would proceed as prior with the infusions. If they are still elevated, the Remicade level and antibody level are helpful here, as well as maybe an ultrasound of the liver and a check for viral hepatitis. In brief, I would do more testing before giving up on a drug you feel well on.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I'm a 61-year-old woman, diagnosed with UC 30 years ago. I've been on azathioprine for about 15 years and have been relatively symptom free, though colonoscopies still show evidence of active disease. I have had few flares, and they subside quickly with a week or so of cortisone enemas. Recently I had a sinus infection that failed to clear after two rounds of antibiotics, and I'm now on a third, which gave me wicked diarrhea and triggered a flare. Should I worry about being on aza?
A: Yes, you should worry. I would worry about a) the long-term exposure to AZA and the associated lymphoma risk b) the long-term history of incompletely treated ulcerative colitis and the associated colon cancer risk and c) the possibility that this “wicked diarrhea” is either a flare of Clostridium difficile (C diff) infection.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have had UC for 10 years now, very mild. Went to my endocrinologists appt recently for my 6-month checkup and my liver enzymes are high. Could my Delzicol contribute to this? I have no other symptoms what so ever.
A: Abnormal liver enzymes rarely are “felt” in any way by the patient. That being said, mesalamines can very rarely (3.2 cases/1 million prescriptions, according to an NIH websity named livertox.org) cause liver abnormalities. Why are you seeing an endocrinologist? It’s more likely that either the endocrine condition you have (i.e diabetes) or the treatment for it (i.e hyperlipidemia, statin medications) has caused these liver enzymes.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: When taking 9 mg a day of Budesonide ER for 8 weeks. Do you need to taper off them the same way you would taper off prednisone and if so, how?
A: I taper my patients to 6mg/d for 1-2 weeks then 3 mg/d for 1-2 weeks, then off. I think it can be done even faster and even stopped completely, esp if there was no response in the first place. We taper prednisone because of concern for adrenal insufficiency but that is unlikely with budesonide.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have been diagnosed with Lymphocytic colitis. I was taking Budesonide but was taken off when diagnosed with breast cancer. I have been given apriso and Questran instead, but I read that one of the side effects was diarrhea. What are other treatment options?
A: I am not sure why you couldn’t stay on budesonide with breast cancer. That being said, Apriso and Questran typically treat diarrhea, don’t cause it. It’s true that mesalamines, which Apriso belongs to, can cause diarrhea in a minority of patients, but generally most patients improve on it. You can also try Imodium.
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Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
December 2018
Q: I was diagnosed with Crohn's and Prostate Cancer within a month of each other. My Crohn's has been in "flare up" status for well over a year. My GI doesn't want to treat Crohn's until my prostate cancer has been treated because he feels that the biologics/immunosuppressants would make the cancer grow faster. However, my oncologists have indicated that they treat both conditions with Humira. Any evidence to support either opinion?
A: Although we would not use a medication like Humira to treat any form of cancer, we know that this class of medication can increase risk of specific types of cancers. The main types are melanoma and lymphoma. Humira and similar medications have not been associated with solid tumor risk like prostate, breast, and lung cancer. It should be safe to consider continuing Humira in this situation to keep the Crohn’s in remission. Another option would be to try a more specific medication like vedolizumab (Entyvio).
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Crohn's (terminal ileitis) in 1990. I have done relatively well after adjusting diet - mostly vegetarian. Meds are Pentasa (1500 mg daily) in recent years with the prednisone at times of flareup (obstruction) ~4 times annually. Recent colonoscopy showed stricture at the ileocecal valve. My (new) Gastro specialist has recommended surgery to remove the problem section of the ileum. Is this a common procedure - what is the typical recovery times and likely meds afterward?
A: Surgery is sometimes needed in the management of Crohn’s complications, including strictures. If the stricture looks more like scar tissue (fibrostenotic) from colonoscopy and MR or CT imaging, then surgical resection is reasonable. If the stricture is short (less than 3cm) then consider balloon dilation with an experienced gastroenterologist during colonoscopy.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I am 73 years old. I was diagnosed with Crohn's in 1998 and the doctor first put me on Pentasa, which works great, in fact, it put me in remission for years. However, about a year ago, the bleeding started again and so the doctor put me on Humira, which works at first but came back, then prednisone, came back, back on Humira, came back. Now the doctor wants to put me on Entyvio. I am very scared as the side effects is too much for me to bear. What are the risk of this medication?
A: All medications used to treat Crohn’s have potential side effects. We have to measure these side effects and compare them with the risk of untreated or undertreated Crohn’s. Potential complications from Crohn’s include stricture formation, fistulas (abnormal connections from the bowel to bowel , skin or other organs) and abscess formation. The risks of Entyvio are actually potentially slightly lower than Humira, given its more gut-specific mechanism.
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Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
November 2018
Q: I have been taking Humira for 7 years with great response and no side effects. Recently I have had episodes of extreme fatigue with weak feeling and a shaky feeling the day after injection. My doctor ran a series of blood work which indicate a possible drug induced lupus. I have absolutely no other symptoms such as joint pain and such. I also take Synthroid 25 mcg and have for years. This level is checked every 6 months. Would switching to another medication end the lupus side effects?
A: It’s hard to know what you exactly had. Sometimes, people can have injection site reactions (the newer humira pens may be better for you), while others can be due to antibodies to humira (which you then need to switch off humira). It depends on what tests your doctors have checked, but if this has been deemed a lupus-like reaction to Humira, then you may have switch to a different therapy. The good news, however, is that you responded well to humira, then we now have lot of choices for you that you will likely also respond well.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: Does Stelara have less cancer potential than other biological as a treatment for Crohns?
A: Keep in mind that people with IBD are at increased risk for cancers, esp if their disease is not under control, so it’s often difficult to know based on the clinical trials whether a person got cancer because they were at higher risk for getting cancer vs whether the actual drug caused cancer. As a whole, we have data on all of the biologics, and none of them have been associated with increased cancers. This includes stelara, where we have not seen any increased risks of cancer.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
November 2018
Q: I was diagnosed 6 yrs ago with UC. It was a mild case. I took Lialda/Mesalamine, and it did the trick. I stopped taking it 6 months ago. A month ago, I had a mild flare up. My doctor wants to put me on Prednisone to bring down inflammation. I do not think my symptoms are bad enough for a steroid. If I take nothing, will the inflammation go down on its own? Is there a natural way to bring down the inflammation? Ginseng or Tumeric perhaps?
A: You probably don’t need prednisone if the flare is mild. We usually give people prednisone to make them feel better and to shorten time of suffering. Similarly, I think that mesalamine is a very good drug for mild disease. Tumeric has been studied as well, but I think that mesalamine is more effective. You can also probably tough this out, but you run the risk of it getting worse. Plus, you are almost guaranteed to extend your period of suffering. Don’t suffer. Take the mesalamine.
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Eugene Yen, MD
Research Associate Professor, Gastroenterologist
September 2018
Q: My daughter was diagnosed with UC 20 years ago. After trying many meds she finally was able to get into remission using Remicade every 2 months. She has been doing these infusions for 10 years with no flares. She is now considering getting pregnant. Can she continue to use Remicade during pregnancy? Can she also breastfeeding?
A: Great question – absolutely, we recommend continuing with the infusions throughout all three trimesters of pregnancy as the priority is to keep your daughter (the mother) in the best health possible to insure a safe and health pregnancy. Infliximab, and all the anti-TNFs, are safe to continue throughout pregnancy and safe to use during breastfeed as very little is passed into the breastmilk. Because these agents are proteins, any tiny amount ingested by the baby will likely be degraded by digestive enzymes. While most of the agents cross the placenta and can be present in the baby’s bloodstream at birth, there have so far been no increased safety signals in terms of infections, developmental delays, or growth retardation. We know this thanks to the PIANO registry, a multicenter prospective pregnancy outcomes registry run by Dr. Uma Mahadevan of UCSF and funded through the Crohn’s and Colitis Foundation. It’s important to discuss family planning with your provider and a high-risk obstetrician familiar with IBD. Moderated Note Added: To learn more about the PIANO Registry email info@crohnscolitisfoundation.org or view program transcript at: http://www.slideshare.net/CrohnsColitis/facebook-chat-120-pregnancy-in-ibd-and-neonatal-outcomes
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: Are there any medical risk or downside of doing an endoscopy and colonoscopy at the same time?
A: There is no such thing as a “risk-free” procedure, however, routine diagnostic endoscopy and colonoscopy are relatively low risk in the scope (pun intended ) of procedures gastroenterologists perform. If your provider recommends getting both procedures for a clinically appropriate indication, then getting both at the same time avoids another round of sedation in the future. An upper endoscopy does not require any bowel prep and typically only adds 10-15 minutes more of procedure time. We routinely perform both procedures together if warranted. Moderator Note added: To learn more about diagnostic test download the brochure Diagnosing and Monitoring IBD http://www.crohnscolitisfoundation.org/assets/pdfs/diagnosing-monitoring-ibd-brochure-final-rev062518.pdf
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I have CD for 15 yrs. and have had 4 resections. I have a protrusion that sticks out in my stomach area. My doctor says it is not a hernia. What tests are needed to find out what is going on? Is a protrusion in the stomach area a common experience with CD?
A: The most common cause would be a hernia from a prior incision site, but that’s usually evident on physical exam particularly if it bulges out as you move from laying down on your back to sitting, for example. Most hernias don’t require intervention, they also may or may not be seen on imaging studies depending on size and location. If it’s not a hernia, then I would ask your provider about other possibilities. Concerning features would be increasing size, pain, warmth to touch, redness, fixed position – not mobile.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I was diagnosed with UC in 2001 and started on Remicade. I am currently on Entyvio. Two years ago I had a routine colonoscopy and biopsies that showed low grade dysplasia. The dr. was able to successfully remove the dysplasia during another colonoscopy under anesthesia. I had another colonoscopy and I can say that I am in remission. No signs of any UC inflammation. However, biopsies again showed signs of low grade dysplasia. What other treatment alternatives are available?
A: There is no “treatment” for dysplasia, per se. The goal is to try to remove the dysplasia if identified. Risk factors for dysplasia are extent of UC (does it involve more than just the rectum), duration of UC diagnosis (we often recommend surveillance colonoscopies to try to detect dysplasia after 8+ years of diagnosis or sooner if there are higher risk factors such as family history or a liver condition such as primary sclerosing cholangitis or personal history of dysplasia), ongoing inflammation and increasing age. The good news is that your UC is well-controlled. However, you have scopes that show dysplasia – the priority is to try to insure we see and remove the dysplasia as best as possible. I would discuss with your provider using an enhanced imaging technique such as chromoendoscopy to try to identify areas of dysplasia and fully remove them if possible. Sometimes, interventional endoscopists are needed to help with these procedures.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2018
Q: What happens if you have a positive TB blood test during treatment with a biologic?
A: Current recommendations would be to have close follow-up evaluation including chest imaging and referral to see infectious disease specialist. Your provider will likely notify you to hold your biologic therapy until confirmation testing is completed.
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Jami Kinnucan, MD
Assistant Professor
May 2018
Q: I am 68 years old and have UC. I was switched 4 weeks ago from Remicade (16 months) to Humira. Suddenly I have severe joint arthritis in my left hip that is making it very difficult to work. My GI says the Humira has nothing to do with the arthritis. The timing is too coincidental. Is there a correlation between the new medication and the development of weakness and joint pain arthritis?
A: [It is difficult to answer personal health questions as there can be nuanced causes of arthritis or it may be related to other co-morbidities.] While uncommon, joint pain affecting only one hip can be related to either IBD or its treatments, includes other medications such as prednisone. It would be appropriate for you to also be evaluated by your primary care physician and/or a joint specialist (i.e. rheumatologist) to further determine the cause and treatment of your new hip pain, especially given the severity of your discomfort.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I had my second dose of Remicade today and I am also on 40mgs of prednisone. Since my first dose of Remicade, I had a small breakout on my face, neck, chest and upper back. However, it's gotten worse. My face is terrible looking. I have never had my face breakout like this along with my neck and chest. Could this be from the Remicade or from prednisone?
A: [It is difficult to answer personal health questions, particularly those about rash, without seeing it.] Yes, treatment with Remicade and prednisone can both cause different types of rashes and skin conditions. For example, steroid medications like prednisone can cause acne, though this will improve as you come off the medication. A dermatology exam may be able to clarify what specific type of skin condition you have, what it may be attributed to, and how to treat it.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I have had UC for 9 years and have been on Humira for the last 1 1/2. I have flared up recently and my doctor wants me to change to either Remicade or Entyvio. I developed antibodies to Humira. Can I also develop antibodies with the other medications? How do I choose between the two?
A: It is possible to develop antibodies to any biologic medication (such as Humira, Remicade, or Entyvio), though early studies suggest that antibody development is less common with Entyvio. Other things to consider when deciding between the two treatments is that they have different mechanisms of action. Remicade is a TNF inhibitor, very similar to Humira. Therefore, if you responded well to the Humira before you developed antibodies, you may respond well to Remicade too. Because Entyvio works through a different mechanism, it is less clear how your disease may respond. Finally, Entyvio’s actions are essentially targeted to the intestinal tract, whereas Remicade functions throughout the body. This difference has implications on the safety profiles of these drugs and may also be important if you have any disease manifestations outside of your GI tract. Your IBD physician can help you decide which medication may be best based on your specific medical history and concerns.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I was diagnosed with ulcerative colitis 6 years ago and was prescribed mesalamine. Six months ago my new specialist determined that I never had the disease. A year after starting mesalamine I developed debilitating exhaustion, and weakness and extreme pain in my legs which no physician has been able to explain. I have seen no improvement in these symptoms since stopping the medication. I am concerned that the medication, taken for no reason, may have caused my symptoms. Is it possible?
A: Mesalamine is typically well tolerated and I do not know of any causes of your symptoms related to mesalamine. Of note, there are other diseases similar to IBD or related to IBD that can also lead to fatigue and body or joint pains. You may want to be evaluated for other diagnoses by a specialist, such as a rheumatologist.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: Are there any clinical trials being done anywhere in the world on reversing scar tissue, particularly in the intestine? If not in the intestine, then are there any studies on reversing scar tissue in the body? Does anybody know of any possible way to reverse scar tissue? How long until this is possible?
A: All clinical trials in the United States should be registered on www.clinicaltrials.gov, and some studies conducted outside of the US are listed on the site as well. There are currently a couple of ongoing trials in Spain specifically studying the treatment of strictures (i.e. scars) in Crohn’s disease.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2018
Q: I am on Remicade and over 55. I am wondering if you have any opinion on getting the new Shingrix vaccine for prevention of shingles. It is a non-live vaccine. My gastro doctor wasn’t familiar enough with it yet to recommend it or not.
A: Vaccination against shingles is typically recommended in all individuals age 50 years and older. However, the previous shingles vaccine contained live virus and therefore was not appropriate for those taking immune suppressive medications, such as Remicade. Shingrix is a new vaccine that does not contain live virus, and is therefore a new option for you to safely receive a shingles vaccine. In fact, the Center for Disease Control’s Advisory Committee on Immunization Practices recently recommended the use of Shingrix over the previous live vaccine for all adults (even those not on immunosuppressive medications), though the vote on this preference passed on very narrow margins (8 favored, 7 opposed). Therefore, it would be reasonable for you to get the Shingrix vaccine both because of your age and because of your treatment with Remicade.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
April 2018
Q: I have had UC for 9 years and have been on Humira for the last 1 1/2. I have flared up recently and my doctor wants me to change to either Remicade or Entyvio. I developed antibodies to Humira. Can I also develop antibodies with the other medications? How do I choose between the two?
A: It is possible to develop antibodies to any biologic medication (such as Humira, Remicade, or Entyvio), though early studies suggest that antibody development is less common with Entyvio. Other things to consider when deciding between the two treatments is that they have different mechanisms of action. Remicade is a TNF inhibitor, very similar to Humira. Therefore, if you responded well to the Humira before you developed antibodies, you may respond well to Remicade too. Because Entyvio works through a different mechanism, it is less clear how your disease may respond. Finally, Entyvio’s actions are essentially targeted to the intestinal tract, whereas Remicade functions throughout the body. This difference has implications on the safety profiles of these drugs and may also be important if you have any disease manifestations outside of your GI tract. Your IBD physician can help you decide which medication may be best based on your specific medical history and concerns.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
January 2018
Q: I am switching to Humira from Remicade due to infusion reaction. What dose and timing of oral prednisone do you recommend to prevent reaction to Humira?
A: That’s an interesting question. With infliximab (Remicade), some providers use steroids (like prednisone) before the infusion with the thought that it prevents infusion reactions. For adalimumab (Humira), I have found that using allergy drugs like diphenhydramine (Benadryl) can be effective in preventing injection site reactions. I have not use steroids with adalimumab in the past to prevent injection site reactions.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: My 21-year old son is on 6mp for several years with good success. He developed hives a week ago that have not gone away. He woke up with swollen hands and feet with welts around the areas. Hives have been seen on upper arms, back, knees, and they come and go. We're seeing an allergist next week. There are warnings to seek medical professional right away if hives and rashes show. He also has a cough and sore throat. Why the warning on meds and could he be allergic to 6MP now?
A: Thanks for your question. Several medications can cause hives. However, it would be unusual that your son having being on 6-MP for several years would then go on to develop hives. It was completely appropriate to seek out a health care professional for the symptoms, but since there are multiple causes of hives besides medication, it may be best to await the work-up before attributing the symptoms to 6-MP.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I was diagnosed with CD in 2014 at age 60. I have been on Pentasa and did ok. I had a flare in mid-2017 and was changed to budesonide after colonoscopy showed moderate inflammation and small ulcers. The budesonide has not helped and now my Gastroenterologist wants to start Imuran or Remicade. I have read about both and wonder which is really better for CD. I can't find any clinical trial data/studies on Imuran in CD and am concerned about its use in CD. Which drug is the better choice?
A: This is a great question. When it’s time to advance medical therapy to medications like azathioprine (Imuran) and infliximab (Remicade), there are multiple considerations. There is data that both medications are effective in CD. The better choice is going to depend on the specific patient. Azathioprine takes 2-3 months to generally kick in and is an oral medication taken daily while infliximab can kick in after 2-4 weeks but is given as an IV in set intervals. It will be best to discuss the best choice with your gastroenterologist.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am a 20 year old male who was diagnosed with ulcerative colitis in 2014. I am taking Asacol HD (600mg) with my Azathioprine daily. The Azathioprine is working very well for me and I haven't had a flare up since I started 2 months ago. However I have been told that this drug can increase the chance of cancer. I wanted to ask what percentage of people taking this medication actually get cancer and of what age group? Should I be worried about taking this medication?
A: This is a very common question. The two most common types of cancer associated with azathioprine are: 1) nonmelanoma skin cancer, and 2) non-Hodgkin’s lymphoma. The risk of skin cancer is about twice that of those individuals with ulcerative colitis who are not on azathioprine. This risk goes away once the medication is no longer being used. Non-Hodgkin’s lymphoma is much less common, and is about four times as likely with azathioprine than without it. However, this risk still equates to about 1 in 1000 after years of taking the medication. Again, once the medication is no longer used, the risk appears to go away. For both types of cancers, older patients (>60 years old) have the highest risk. Having said this, we also have to weigh the risks of any medications against the risks of having uncontrolled ulcerative colitis like surgery and colon cancer. I’m glad to hear your disease is under control.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
December 2017
Q: My adult daughter was diagnosed with CD in 2013 and started Remicade in 2015. For the past 6 infusions she has had an allergic reaction during the infusion. She is given a steroid than the infusion starts again with no problems. She isn't presently having any flare-up symptoms. Does this mean she should stop Remicade? She is also on methotrexate, but has no relief for RA symptoms, which are getting worse. Do you have any suggestions on meds for both Crohn’s and RA?
A: Allergic reactions can occur during the Remicade infusions. Because your daughter has required steroids during the last several infusions, she may want to try pre-treatment with a dose of an anti-histamine, such as Benadryl, and a dose of steroids before the infusion in order to prevent a reaction. Slowing the infusion rate sometimes can also be helpful. Methotrexate is often useful for both Crohn’s and arthritis. Your daughter may want to discuss whether the current dose of methotrexate can be adjusted to better control her joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I am on Remicade and MTX. The side effects are very hard to live with. I feel tired, often dizzy, run down, and weak. I take the MTX on Sunday night via injection. If I was not semi-retired, I would be in trouble because I could not work Monday or Tuesday each week. Is there a point where the healing is sufficient that I can get off this stuff? Is there healing going on at all? My quality of life was better when I was going to the bathroom all the time
A: If you think that the symptoms of fatigue, dizziness, and weakness may be due to the methotrexate, I recommend discussing possibly stopping the medication with your doctor. Methotrexate is often used to prevent antibody formation to Remicade, and your doctor can advise you whether you may be able to try Remicade on its own, or possibly with an immunosuppressant from a different class of medications that may not cause the same problems for you. However, you also make a very good point that it is important to find out if your intestine is healing on your current medication regimen. Some of your symptoms, such as fatigue, could also be caused by ongoing inflammation. Your doctor may do testing include a stool test for calprotecin (a marker of inflammation), a colonoscopy, or a MRI or CT scan to help determine if the intestine has healed.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: My husband with Crohn's is moving to Humira or another biologic. The problem is he keeps running into issues with the TB blood test coming up indeterminate, and although a follow up CT scan revealed no issue, he is being referred to an infectious disease specialist because they are worried about latent TB. How likely is it that my husband actually has latent TB, or is it showing up indeterminate because of his immunosuppressant? What are his treatment options if he does have latent TB?
A: It is very important that your husband has been tested for TB prior to starting a biologic, since if TB were present and inactive, it could become re-activated on biologic medications. You are correct that your husband’s TB test may be resulting as “indeterminate” because of his immunosuppressant. Going to the infectious disease specialist seems like a good way to be sure. If the doctor does find evidence of latent TB, then anti-bacterial medications to treat the latent infection, such as Isoniazid, may be prescribed. Once the treatment for latent TB has been started, patients are able to proceed with their biologic treatment for Crohn’s.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I had resection surgery for Crohn’s disease 3 years ago. I had a scope several months after surgery that showed ulcers at the anastomosis site. My recent scope showed that the number of ulcers has increased but my doctor does not consider it a recurrence. I have started to have GI symptoms. Is this typical to have an increase in ulcers and symptoms? I am worried it is a flare-up. How can doctors tell if this is a flare up or recurrence? I am currently on Entocort and no other IBD medication.
A: I would consider your GI symptoms along with colonoscopy findings showing ulcers as indications that your Crohn’s is active (you could call that either a flare or recurrence, I think both are the same in this case). Entocort (budesonide) is a steroid, and should only be used as a short term treatment to induce remission. It should not be used long term to maintain remission. It sounds like you should discuss starting a more long term medication to treat your Crohn’s with your doctor, either an immunosuppressant or biologic. I think it is important to do this soon so that your disease does not continue to progress---we do not want you to need another surgery down the line.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I had my first Remicade infusion two weeks ago and been off steroids for a week. Is this normal to continue to have really bad pain? The day after the infusion my pain increased. Is my treatment not working or does it take a long time for it to work?
A: Remicade has 3 “loading doses” during which time you are getting to the right level of drug in your system. The drug is dosed at week 0, 2, and 6 initially. Sometimes patients will need a longer period of overlap with steroids and Remicade in order to give the Remicade more of a chance to work. Or, sometimes your doctor may need to adjust the amount of Remicade you are given during the infusion. Also, it will be important to work with your doctor to find out why the pain is occurring—if it is due to the active inflammation in the intestine, a narrow area, scar tissue, or maybe something else. Not all pain is caused by active inflammation, so it is important to know why it is happening so that the correct treatment can be chosen.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: My daughter has had Crohn’s disease for 6 years. Three months ago she developed an anal stricture and has had 2 colonoscopies and dilatations. Is this stretching only achieved by full colonoscopy? The prep is so hard for her to keep down. She currently takes Imuran, Apriso and Entocort but is flaring more and the doctor has recommended a biologic. How are the options for choosing a biologic usually compared? Remicade vs. Stelara vs. Humira etc?
A: Stretching of an anal stricture can sometimes be done via flexible sigmoidoscopy (a short scope into the bottom of the colon). However, some sort of bowel prep would likely be necessary. There are several different options of bowel preps, so perhaps your daughter can work with her doctor to find one that is easier for her to tolerate. In terms of her medication regimen, it sounds like changing medications would be a good idea. Entocort (budesonide) is a steroid medication, and should only be used for a short time to help induce remission, but should not be used as a long term maintenance medication. Also, it is targeted to the end of the small intestine (terminal ileum) and right side of the colon, and is likely not helping the anal stricture area. Apriso is FDA approved for mild to moderate ulcerative colitis, and is likely not effective for Crohn’s disease that is causing strictures. Biologic medications such as the ones you have mentioned are effective for moderate to severe Crohn’s that has failed to respond to other medications. Remicade and Humira are both antibodies directed again TNFa, one part of the overactive immune response that is attacking the intestine. Remicade is given as IV infusions, 3 times in the first 6 weeks, and then every weeks. Humira is a shot every 2 weeks. Stelara is an antibody against two chemicals involved in the immune response, IL-12 and IL-23. It is given as a one time IV infusion, and then a shot every 8 weeks. All are effective, and your daughter’s doctor may be best able to discuss the risks and benefits in her particular situation.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2017
Q: I am 20 yrs old and was diagnosed with UC in 2009. I was on the anti-depressants celexa and amitriptyline to help with my depression. I came off of the antidepressants three months ago. Since coming of the antidepressants my depression, anxiety and colitis all got worse. Are there better antidepressants that can help control my diarrhea and inflammation. I currently take protonix, and welchol.
A: Treatment of depression and anxiety are very important parts of your care, and very important parts of your overall well-being. However, anti-depressants cannot control the inflammation caused by your UC. Amitriptyline may have helped slow the diarrhea, but again it was not treating the underlying immune over-activation that is causing inflammation in your colon. In addition to treating the anxiety and depression, it is also important that you get on effective medication to treat your UC. From the medications listed, it does not appear that you are currently on any UC therapy, and it will be important to work with your gastroenterologist to find an effective therapy for your to control the inflammation, and, in turn the diarrhea.
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Sushila Dalal, MD
Assistant Professor of Medicine
November 2017
Q: Before I was diagnosed with Crohn’s I already had a weak immune system. I’m about to start a biologic IV infusions. Should I be wearing a mask after my treatments to avoid getting sick or picking up germs?
A: “Biologic” medications used to treat Crohn’s disease are antibody’s to specific molecules in the immune system that are activated in Crohn’s. Although biologics are down regulating the immune system they are not as potent as chemotherapy used to treat cancers. There is no need to wear a mask when receiving these treatments. Standard precautions should be taken though, such as hand washing and minimizing direct contact with those that are sick. The Centers for Disease Control and Prevention (CDC) has tips on hand washing at: https://www.cdc.gov/handwashing/when-how-handwashing. I would also recommend making sure vaccines for the flu and Streptococcus pneumoniae are updated. Your gastroenterologist can help you determine which additional vaccines you need.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I've been taking 6MP for 10+ years, and it's been doing a good job of keeping my Crohn's in check. I recently started seeing a new GI who wants me to switch from 6MP to Remicade or Humira. He said tests are showing my inactive metabolic levels to be in the liver toxic range. I really don't want to do a Remicade or Humira-type drug at this time. Is 6MP truly toxic, and if so, is there another alternative drug besides Remicade or Humira?
A: 6-mercaptopurine (6MP) monitoring includes evaluating a complete blood cell count (CBC) and liver enzymes on a routine basis. If the liver enzymes are elevated from 6MP then usually a change is made such as a reduction in dose or stopping the medication. Sometimes the liver enzymes are elevated and may not be related to 6MP. High levels of the inactive metabolite, 6-MMP, of 6MP in the setting of elevated liver enzymes suggest 6MP is the reason. If the liver enzymes are not elevated and your Crohn’s is in remission then 6MP may not need to be discontinued. All immunosuppressants used to treat Crohn’s have potential benefits and also potential low risks. In addition to infliximab (Remicade ®, Inflectra® ) and adalimumab (Humira®) other medications for Crohn’s include certolizumab (Cimzia®), ustekinumab (Stelara®), vedolizumab (Entyvio®), and methotrexate.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I was diagnosed in May 2016 with Crohn's and take Imuran and Remicade. I am having a hard time sorting out if my meds are causing side effects. I got my maintenance infusion one day and the next day developed a severe headache, flushing, nausea. The acute headache has subsided but I still do not know if this is coincidence or am I not tolerating my meds. Can the medication be causing these symptoms?
A: Occasionally Remicade® can cause an infusion reaction at the time of the infusion or a delayed reaction. More typical symptoms of a delayed reaction include joint pain, abdominal pain and nausea. Other symptoms certainly may occur. Some symptoms may be prevented by giving medications such as acetaminophen (Tylenol ®), diphenhydramine (Benadryl ®), and corticosteroids (methylprednisolone, prednisone, or hydrocortisone) prior to the infusion of Remicade ®. I recommend discussing the symptoms with your treating physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: My husband takes Remicade Infusions every 8 weeks for his UC. He has been complaining of sore muscles, achy joints and tired all the time. He has no sex drive. Is there something we can do for these side effects?
A: Occasionally Remicade can cause delayed reactions that can include symptoms of sore muscles, achy joints and fatigue. Delayed reactions can occur up to 2 weeks after an infusion. Sometimes steroids given prior to an infusion and for several days after an infusion may prevent a delayed reaction. If symptoms are occurring all the time, evaluation for drug induced Lupus is also recommended. Generally the treatment of drug induced Lupus is stopping the offending medication. I recommend discussing the symptoms with your husband’s treating physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I am 35 and had Crohn’s since age 20. After 12 yrs on Pentasa I was switched to Humira 3 yrs ago. It worked great with no side effects and I thought the CD was in remission until being hospitalized with an abdomen abscess infection. I’m on strong antibiotics with 3 weeks to go. After the antibiotics the doctors will figure out what treatment to use going forward. GI says there's indications of fistula. I want to avoid resection surgery. Are there treatment options other than surgery?
A: If there is concern that the abscess will not completely resolve and the area of Crohn’s is short segment of intestine, then surgery generally is preferred since it minimizes significant complications down the road. If the abscess resolves, then medications that can potentially treat your Crohn’s and fistula can be tried. These medications include Remicade ® and 6-mercaptopurine (or azathioprine). In addition to medical therapy sometimes, bowel rest and total parenteral nutrition are also recommended to help heal fistula and Crohn’s.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2017
Q: If a patient has been on Azathioprine and balsalazide for 15+ years. What blood tests should be performed for routine monitoring? My husband's GI has been just doing a CBC, but as a result of his yearly physical lab report (with family practice dr.), we learned he has liver impairment. Are regular liver tests standard if you take Azathioprine? Should I be concerned about the level of care he's receiving from his current GI doctor?
A: Thanks for the question – monitoring while on medications is important as we can sometimes pick up on subtle changes and act on them before they become a problem. Balsalazide is generally a very safe and well tolerated medication and doesn’t require strict monitoring like some of the other medications. We do recommend checking kidney function through bloodwork at least every year with something called a metabolic panel or profile. This is because there is a rare condition called acute interstitial nephritis associated with this class of medications – I have to emphasize that this is really uncommon, but it’s simple enough to check kidney function annually with blood work, especially if you are taking other medications that can affect the kidneys or have conditions affecting the kidneys (but you are probably already being monitored for that already. With respect to azathioprine, we do recommend getting routine bloodwork – depending on how long and how stable the dosing regimen has been, it can be every 3-6 months. In my practice, I check a CBC (complete blood count) to monitor the White blood cell count number, which can occasionally be low while on the medicine; the Hemoglobin/Hematocrit (which helps us look for anemia), and the platelets which are a subtle and non-specific marker of inflammation. I also check what’s called a complete metabolic profile to check kidney and liver tests, azathioprine can sometimes increase the liver numbers, so we monitor that as well. Also, we recommend at least annual skin exams while on azathioprine, sun protection and to reapply given the association with an increased risk of skin cancer.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: I'm 25, have Crohn's Disease, and am currently regulating it with diet as I didn't respond well with the different medications. I get sores in my mouth during flare ups, but this time is the worst I have ever experienced. I have sores all along my jaw and cheek inside mouth causing a pretty swollen cheek. It's been like that for almost 2 weeks now. Any suggestions on what to put on the sores or how to get inflammation in cheek to go down?
A: My first thought when reading this is that you may have active Crohn’s disease as oral aphthous ulcers tend to be present during active disease. The first thing I would recommend is to get an evaluation of your disease activity. In terms of addressing the symptoms, mouthwashes or rinses that contain steroids and analgesics such as viscous lidocaine are temporizing measures but treatment of the underlying issue is the key. If there isn’t active Crohn’s disease, other causes can be vitamin/mineral deficiencies – zinc, iron, b12, etc, or viral infections or other autoimmune conditions such as Behcet’s disease. However – I suspect that your Crohn’s disease isn’t as well controlled as it should be and would recommend an evaluation, particularly if you are this symptomatic.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: My son has Crohn's and was on Remicade+MTX from past 5 years. He started with flare-up recently but his Remicade blood levels were normal with no antibodies detected? What does this mean? His blood tests and endoscope showed elevated Eosinophils. Colonoscopy showed inflammation in colon. Does it mean the Remicade became ineffective even with no antibodies? Or could it be due to any other infections or food allergies?
A: It depends on how “normal” the levels are – during active disease, sometime patients require higher dosing and adjustments to still keep them therapeutic. For example, therapeutic is a value > 5, but if someone is symptomatic with a level of 6, they may do better with higher dosing or shortened intervals. If the levels are an acceptable level and there is active disease, then this means that he likely lost response to Remicade/MTX combination – meaning, in simple terms, that his Crohn’s disease outsmarted the medications and he would potentially be better with a medication that works in a different mechanism of action such as vedolizumab (Entyvio) or ustekinumab (Stelara). However, discuss this with your gastroenterologist first.
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Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2017
Q: I cannot tolerate sulfur medications so I was on 6-MP from 1973 until May 2017. I switched to Humira because the number of Squamous cell cancers I had increased to over 10 per year. I was just diagnosed with Melanoma which the oncologist believes it started before the Humira. I am looking for alternatives to both 6 MP and Humira. What are treatment options for CD following a Melanoma diagnosis? Are they any clinical trials or new medicines that may be appropriate?
A: The use of immune modulators, such as 6mp and azathioprine have been associated with up to a tenfold increase in non-melanoma skin cancers. The anti TNF biologics (Humira and Remicade) may be associated with a very slight increase in melanoma skin cancers. Use of other agents will depend on the stage of melanoma and the surgery that was done. Generally, methotrexate has not been associated with lymphoma or solid cancers and the newer drugs such as Vedolizumab (Entyvio) and Ustekinumab (Stelara) have not been associated with increase in melanomas. Entyvio is gut specific and probably the safest alternative.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I have had Crohn’s since 2009 and have an anal fistula. I have been on Imuran, Pentasa and had an allergic reaction to Humira injections. I had an allergic reaction at the injections site but the injection did work. Would this response make me allergic to all TNF Blockers? What would be the next course of action besides surgery?
A: Local reactions to Humira injections would not prevent you from using Infliximab (Remicade) which is given by I.V. Remicade is the only drug shown in double blind studies to be effective in healing fistulae. In addition, use of antibiotics (cipro or flagyl) and Methotrexate can be used in combination, and insertion of setons and drainage of abscess is important. Most important is cooperative treatment with colon and rectal surgeons to be successful in treating fistulae.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: Can using Remicade or other biologic contribute to developing warts on hands and feet?
A: Use of Remicade and other biologic agents have not been associated with developing warts on hands and feet.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2017
Q: I was recently prescribed 1g Asacol foam enema. I was on the Salafolk ones for about a week but I was told it was the same stuff so didn’t really worry. I’ve been having a tougher time with these Asacol ones. I just can’t seem to hold them in as long, some nights they seem to come out right away. My usual time of holding them in at the moment is about an hour before I need to go. Is this enough time for the medicine to work?
A: Typically the foam based formulation is easier to hold than the liquid formulation. It should get better the longer you are on therapy. If it is not improving, I would discuss with your physician about a change of the formulation back to the liquid if that was easier to hold.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I’ve looked at the drug profile for ulinastatin and it seems as though it would be a good fit to treat severe, refractory Crohn's disease. It may also stave off fibro stenosis for those with a stricturing phenotype administered post-op following resection. I wonder why more studies haven't been conducted? What are your thoughts on this as a treatment option?
A: This is not a therapy I had heard of until this question. I was able to find a few in vitro studies, but no clinical trials are currently being conducted. I have passed this along to our clinical trial team as they may have more information. I am sorry I don't have more information for you. http://onlinelibrary.wiley.com/doi/10.1111/j.1744-9987.2011.00967.x/full#references
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I was diagnosed with Colitis last year. I was first prescribed Pentasa and now Mezavant both started to work for 3 months but not anymore. While on both medications I found sex painful. I went to see a Gynecologist who told me that there was a lump on the left side where I felt the most discomfort. Could my colon be inflamed? I'm lost as to what doctor to see and what my options might be.
A: If your gynecologist felt a lump they should have followed this up with an ultrasound. It is possible that your colon is inflamed making intercourse painful. I would follow-up with your gynecologist and your gastroenterologist to ensure that you have healing on these medications.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I was diagnosed with CD 10 years ago at age 26. The disease is classified as mild to moderate to date. I have managed it with only two antibiotic courses as treatment. My doctor wants me to treat the disease when most days I don’t think my symptoms warrant treatment. In addition the treatments risks don't seem to outweigh the benefits for me. How do you make the decision what treatments are better than the disease itself and which treatments are best for mild to moderate case of Crohns?
A: Mild to moderate Crohn's disease should be treated. As even when you don't have symptoms you likely have ongoing inflammation what we call "subclinical" inflammation. If your disease mild to moderate depending on the location of the disease and whether you have any stricturing or abscess/fistula there are multiple medications that can be recommended. You should follow-up with your gastroenterologist to discuss treatment options. Untreated disease overtime can require surgery, medications prevent surgery and progression of disease including colon cancer related to Crohn's disease in the colon.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I have not had a bowl movement in almost a week. Can this be a problem associated with Crohn’s Disease? What should I do?
A: Constipation can be associated with Crohn's disease. However this type of problem should be evaluated with your provider.
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Jami Kinnucan, MD
Assistant Professor
August 2017
Q: I've been on sulfasalazine for 22 years with no problems. My uc has never been severe as far as my symptoms. At 62 years old, I'd like to stay on sulfasalazine. After my recent colonoscopy my GI wants to try Entyvio. I'm very reluctant and can't figure out why. My former GI retired and this is a young new GI. Not doubting his experience but I'm leaning toward staying with sulfasalazine. Are there any long term side effects of sulfasalazine that would justify my GI changing to Entyvio.
A: Since your diagnosis we have changed the way we manage disease. While sulfasalazine is a very effective therapy to manage ulcerative colitis, I assume that your new provider found active inflammation on your colonoscopy (despite you feeling well), we call this subclinical disease. Currently our goals are to treat to mucosal healing which means you feel well and your colon looks healthy. Entyvio is a safe therapy that only impacts the immune system in the gut. If your provider is recommending escalation of therapy it is likely due to the fact you have ongoing inflammation in your colon. I would address your concerns about the new therapy with your new provider or seek a 2nd opinion.
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Jami Kinnucan, MD
Assistant Professor
July 2017
Q: I am 40 years old and have had ulcerative colitis for 30 yrs. I've been on 5ASAs most of the time with Prednisone to help on the occasional flare-up (once every few years). Recently flare ups have been coming back more often (2 flare ups in the last 9 months) and my doctor wants me to change to a stronger medication. He has suggested either 6MP or Humira. Does one work better in terms of response, safety and side effect? How do I choose one over the other?
A: Great question. The side effect profile and safety issues for 6-MP and Humira are actually very similar. 6-MP is typically started with prednisone because it takes 2-3 months to work. Humira usually starts working in 4-6 weeks and may require a shorter course of prednisone before it kicks in. As far as which agent is more effective, this may vary from patient to patient. In general, Humira appears to be more effective. The choice of one over the other really depends on multiple factors including choosing between injections vs. pills, the labs sent prior to starting these therapies, and insurance coverage.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have had a rash around my mouth and now has moved around my eyes for about 9 months now. The doctors thinks it is perioral dermatitis, but they aren't sure? I have been on remicade for about two years and currently on prednisone to reduce lip swelling and the rash goes away. The rash comes right back after I’m off the prednisone. How can this condition best be treated?
A: Thanks for your question. I would see your primary care doctor and perhaps a dermatologist as the rash could represent other diseases apart from inflammatory bowel disease. After you obtain a more formal diagnosis of the rash, a better treatment regimen may be recommended. Staying on prednisone for the rash is not the ideal treatment strategy.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2017
Q: Is there any treatments for healing fistulas besides Remicade?
A: Yes, other anti-TNF agents such as adalimumab can help treat perianal fistulas. There is some data from the recent national gastroenterology meeting that ustekinumab can help heal fistulas as well and some data on vedolizumab. Recently, studies on stem cells that are directly injected into fistulas show a lot of promise. In severe cases, surgery can be needed.
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Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: Are there any drugs besides Biologics that are being investigated?
A: Yes there are new oral drugs that are in late stage trials or likely soon to be approved. For ulcerative colitis, tofacitinib is a small molecule that blocks inflammation through the JAK pathway and may be approved by the FDA soon. For Crohn’s disease, mongersen is an oral agent that works locally in the intestine to alter inflammation through a novel target in the TGF beta pathway. This drug is in phase 3 trials currently.
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Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
May 2017
Q: Are FMT clinical trials only available for people with c-diff and uc? How can I find a clinical trial for FMT for UC?
A: Currently Fecal Microbiota Transplants (FMTs) are only allowed for treatment of certain C. difficile infections. However, there are ongoing studies of FMT for Crohn's disease and ulcerative colitis, as well as other conditions. Those registered in the United States are listed on www.clinicaltrials.gov. Some studies which are taking place abroad are also listed on this website.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: What are the research finding for probiotic VSL#3 for Crohn’s and Colitis. Has this been successful for patients?
A: On the whole, studies of probiotics for IBD have been disappointing. This may partially be attributed to the small sizes of the studies, and the varied doses and types of probiotics studies which makes it hard to aggregate studies for comparison. With that being said, almost universally, studies have shown there are no to minimal adverse effects from taking probiotics, so I don't discourage my patients from trying them as long as (1) they can afford them and (2) find them helpful. Of the studies that have been done, some of the most promising are those for VSL#3 for use in IBD patients with pouchitis. Even then, the studies were small and results were varied.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: LDN (Low dose Naltrexone) has been a game changer for my 14 year old daughter with Crohn's. Is LDN considered a promising treatment options for Crohn’s & Colitis patients?
A: Early studies for the use of low dose naltrexone in Crohn’s disease have been promising. However, these studies have either been very small in size or designed with a comparison arm. Before it can be considered as a more mainstream treatment, more studies need to be done.
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Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
March 2017
Q: I understand that patients can lose response to biologics after a few years? Is it worth the risk of taking a biologic given the potential side effects like cancer or PML?
A: All medication is judge by risk versus benefit. Risk of cancer with biologic medications is no longer considered significant. The risk of PML was seen with only one biologic - natalizumab (Tysabri) - which has since been replaced in treatment protocols by vedolizumab (Entyvio) and that drug has not been associated with PML.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have CD and will be taking antibiotic for a non-GI issue. Is it appropriate to take a large dose of probiotics prior, during or after treatment with antibiotics? Can the use of antibiotics potentially cause a flare up?
A: Use of antibiotics can potentially cause a flare of CD if it triggers a c-difficile infection/colitis. Antibiotics by themselves do not cause CD flares. Florastor® has been approved by the FDA to use with antibiotics to prevent antibiotic induced diarrhea at a dose of 250 mg twice daily for the length of antibiotic use.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have chronic UC which is in approximately 85% remission. Would it be safe to have a total hip replacement and take Coumadin for 6 weeks? Could Coumadin trigger a flare up in some uc patients?
A: There is no contraindication to using Coumadin in patients with chronic UC. Coumadin is safe if anticoagulation is kept within therapeutic range for the condition it is being used to treat. Coumadin does not cause chronic UC flares.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have severe ulcerative colitis of the entire large colon. Is it safe to use prednisone 20 mg daily, lialda (mesalamine) 2.4 gm 2x daily and sulfasalazine 1,000 mg 3x daily together? I'm worried about taking so much medication.
A: The goal in the treatment of patients with IBD is to use steroid sparing medications as much as possible. If you have been on steroids long term, escalation of your therapy should be considered. It is not unusual for patients to be on both steroids and mesalamines while trying to get in control and this is safe. I typically do not have patients both on lialda and sulfasalazine but your provider may have reason for this – perhaps joint pain. Currently there should be no safety issue in the combination that you are currently presently taking.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I am 28 years old and was diagnosed with UC in May 2016 (first flare). I had a second flare in Sept 2016. I was hospitalized both times. I am now on 5 mg of prednisone (every 3 days) and salazopyrin (3mg pd). I feel that a flare might come again. I feel tired and have gas. This potential 3rd one comes 4 months after the last one. Which is exactly the same amount of time between the first two. How can I manage my disease proactively?
A: Given two hospitalizations in a year, I think you should discuss with your provider considering escalation of therapy – proactively your provider can check blood and stool tests to see if there is any active inflammation, a repeat endoscopic evaluation could be in order as well. The goal is that you get off steroids to avoid long term complications of these medications and that your disease be more deeply controlled. Many patients also monitor their symptoms closely by journaling or using apps such as GI Buddy – and this can give helpful information to your provider.
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Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
February 2017
Q: What is the long term effectiveness of a bowel resection as a treatment? What factors lead to longer period of remission?
A: Surgical treatments for CD include bypass, resection, and strictureplasty. The aim of surgery for CD has shifted away from radical operation (used in the 20th century), to minimal surgery, intended to remove the least amount of bowel possible. The surgeon must assess which procedure is most suitable at each area of the disease (this may include a combination of areas of resection and separate areas of strictureplasty). The recurrence rate of Crohn’s disease (CD) post-operatively is unaffected by the width of the margin of resection (meaning if you remove more bowel, this does not reduce the rate of recurrence). The reoperation rates for recurrence of CD have been reported to be 10%-30% at 5 years, 20%-40% at 10 years and 40%-60% at 20 years after surgery. More recently, there have been 3 factors that have been shown to reduce the rate of recurrence of Crohn’s disease after surgery. These factors include 1) using medications post-operatively to prevent recurrence (medications such as immunomodulators and biologic agents have been shown to be effective at reducing recurrence on colonoscopy), 2) performing a colonoscopy within 6 months of a surgery and adjusting medications based on the results and 3) avoiding smoking. A large study called the POCER study was able to show improved outcomes in CD (less recurrence) when colonoscopy was performed at 6 months and adjustments made.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2017
Q: I'm female with acute CD in the terminal ileum. I was on Remicade for 8 years with great success, but am now in the midst of my first flare-up. The doctors tell me that I have an abscess, a developing fistula, and a pretty severe stricture in the ileum (which is my big problem area). I'm currently on antibiotics for the abscess, TPN, and a clear liquid diet. My doctor wants me to have surgery, but I want other options to consider first. What are some other possible treatment options?
A: When an abscess develops, this indicates that the Crohn’s inflammation has burrowed all the way through the intestine wall, and has actually made a hole in the intestine wall. The little hole in the intestine allows the contents of the intestine to leak out into your abdomen, and you body defends itself by walling off the area and creating an abscess. Surgery is required to fix that hole in the intestine wall, because medicines are not able to do that.
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Sushila Dalal, MD
Assistant Professor of Medicine
December 2016
Q: I had a right hemicolectomy in June 2015 with removal of the ileocecal valve. I have had constant severe diarrhea since that time. I have tried many medications with no success. Any suggestions?
A: The ileocecal valve is an anatomic landmark that connects the ileum (small intestine) and colon (large intestine). Unfortunately, many questions concerning its function and structure remain unanswered. We do know that the intestinal contents pass from the ileum and into colon through this valve, and the passage is controlled by chemicals in the blood stream and nerves supplying the intestine. Furthermore, the valve may help maintain a difference in the bacteria found in the colon compared to the ileum. Most patients who have their ileocecal valve removed do not experience any long-term change in their bowel habits. The frequent or loose stools (diarrhea) that do occur in others can result from multiple causes that must be sorted to determine the best treatment. If a large amount of the ileum has been removed with the ileocecal valve, the body is unable to manage fat in the diet, and the resultant diarrhea (steatorrhea) tends to be associated with oily stools that may float and are particularly foul-smelling. In this instance, a medication (cholestyramine) taken at mealtime can improve the diarrhea. In other patients, the diarrhea occurs because of colon bacteria now residing in the ileum (small intestine bacterial overgrowth). This overgrowth can also cause bloating and pain, and is usually managed with antibiotics taken for 1-2 weeks, but repeated courses may be required. Lastly, the diarrhea can result from the intestinal contents passing too quickly along the length of the bowel. Anti-diarrheal agents (diphenoxylate plus atropine, loperamide) can slow this passage to decrease the frequency of the stool. Moreover, over-the-counter fiber products may help increase the stool’s consistency.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2016
Q: I had surgery in 2000. I had my colon removed and had a "j" pouch to avoid an ileostomy. I have developed a skin irritation that will not heal because of the frequency of bathroom use. It is extremely painful and I am requiring prescription pain killers. Is there any information on ways to help the skin heal?
A: Irritation of the skin around the anal area (perineum) caused by frequent stools (diarrhea) or poor control (incontinence) is caused by many factors working together. Frequent cleansing causes damage from abrasions and alters the skin’s protective acid content (pH). Excessive moisture further alters the skin’s pH, which increases its porousness (permeability). In addition to the local inflammation caused by cleansing and moisture, infection may develop as germs contained in the stool can penetrate the traumatized and porous skin. Management of the perineal skin damage requires local measures as well as identification and treatment of the underlying cause. Perineal skin cleansing should be performed after each stool or incontinent episode. Specific cleansers are available in many forms (emulsion, foam, liquid, towelette). Bar soaps, skin cleansing agents, and antibacterial hand-washing products can worsen the problem. The affected skin needs to be moisturized to reinstate the depleted factors. Humectants (glycerin, lanolin, methyl glucose esters, mineral oil) contained in perineal cleansers replace the skin’s natural oils. No-rinse perineal cleansers with humectants minimize drying because they remain on the skin rather than being rinsed away. Moisture barriers (protectants) contain active ingredients (dimethicone, lanolin, petroleum jelly, zinc oxide) to shield the skin from exposure to irritants and moisture. A moisture barrier may be incorporated into skin cleansers or separately applied as a cream, ointment, or paste. Ointments and pastes are longer lasting and more occlusive. Liquid barrier films or skin sealants combine a solvent that evaporates and a polymer that dries to form a barrier when applied. Some solvents may irritate the damaged skin, and any product should be accordingly used only if not associated with stinging during application. A liquid film barrier should not be combined with a moisture barrier because these agents are typically incompatib
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2016
Q: What are the pain management options? NSAIDs are out for obvious reasons. Tylenol only takes edge off. Narcotics have their own list of problems including but not limited to addiction. I've asked for an antispasmodic to hopefully reduce spasms/pain. But this is a last ditch effort on my behalf to control my chronic pain. I'd love to hear any other suggestions.
A: The more chronic the pain, the more it involves the brain. What I mean is that the brain re-organizes if constantly bombarded by pain signals and neighboring brain regions that process emotions (anxiety, depression) and thoughts can also be affected. Most research supports learning coping skills to reduce these negative emotions or negative or pessimistic thinking as the best way to reduce pain perception. You are correct narcotics have many side effects and have been associated with greater risk of infections and death in patients with Crohn’s disease. There are non-opioid pain medications that have evidence in helping pain – working both on the nerves and in the brain. Finding a pain doctor or psychiatrist who specialized in chronic pain can help you find specific options.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I would like to know more about extraintestinal / non-gut pain relief. Joint pain seems to be a big problem for me, even when the Crohn's is mostly in remission. Tylenol has been the only thing I can take without unpleasant side effects. What natural pain relief options are out there? Also, where is the research on this today? Has there been any progress?
A: First for any type of pain, you want to check with your gastroenterologist to make sure that it is not due to inflammation and other medical causes. The most natural pain relief options are those that do not use medications- brain techniques such as relaxation, meditation and increasing enjoyable activity. For natural pain options, omega 3 fatty acids have been studied but best to check with your doctor.
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Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: My GI doctor has recently suggested a new treatment for my Crohn's disease. He has suggested the medication Entyvio. I haven't heard much about the medication, and before committing I'm trying to gather information about medication.
A: It’s always a good idea to gather information on a new medication that is being recommended. Entyvio is a biologic medication that binds a gut-specific protein that is important in causing inflammation. It is given as an intravenously (IV) infusion, a little more initially to induce remission, and then usually every 8 weeks for maintenance. Its safety profile so far seems to be better than the anti-TNF agents like Remicade and Humira. However, it looks like it can take longer to start working than those medications. I would speak to your provider for further details. You can also obtain more information on Entyvio from http://www.ccfa.org/resources/biologic-therapies.html.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I’ve been taking Pentasa since being diagnosed with CD in 2003. I initially started out at 4 pills 4 times a day at 500mg a pill. My symptoms have been well controlled since. The past 2 years I w/Dr have changed my dosage to 4 pills once a day still 500mg. In the past 2 years my big toe nails have both become discolored and infected. Just recently I have noted getting the tingles/numbness in my arms and legs at times. Could I be having medication withdraw? Or is it just a coincidence?
A: Peripheral neuropathy has been rarely associated with mesalamine products like Pentasa. I don’t know if the discoloration and infection of your toe is related to the Pentasa though. I would check with your provider and ensure that other causes of tingling/numbness in your extremities, especially if these are a persistent symptom, are ruled out.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I've been taking Pentasa for 23 years. First, 4 pills @ 250 mg twice a day and the last couple of months 2 pills @ 250 3 times a day. In both situations I feel the medicine after 23 years has been the cause of my sinus/nasal issues and makes it hard to breathe. I also have a general unwell feeling. Is it possible to build an intolerance to this medicine after 23 years? Prior to Pentasa I took Azulfadine for many years and could no longer take it. What are some other treatment options?
A: Sinus/nasal problems would be an unusual effect of a medication like Pentasa. Things like sinusitis (inflammation of sinus tracts) has been reported with medications like Pentasa in large studies but it is uncommon. If you have generally been feeling unwell, from an IBD standpoint, it may be important to ensure that your disease is controlled. Often your symptoms don’t correlate with active intestinal inflammation so it is important that labs, imaging, and/or colonoscopy are performed to obtain an objective assessment of the disease. If you do have active intestinal inflammation, there are several treatment options based on the degree of disease severity that you can discuss with your provider.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2016
Q: I’m a 27 year old female diagnosed with Crohn's May, 2015. I also have Multiple Sclerosis diagnosed in 2006. I am currently receiving IV rituxan infusions for the MS. My neurologist urges against additional immunosuppressants (prednisone, remicade, etc) and states that rituxan is also used for CD. I have not found literature on rituxan use in CD. I’m not on any treatment for the CD yet except dietary changes. Do you have information on rituxan and suggestions on treatment options?
A: Rituxan has been studied in Crohn's disease and has not been effective, so we do not give this for Crohn's patients alone. Regardless, if you were doing well on rituxan from a Crohn's standpoint, I too would avoid other treatments. However, if you are not doing well, I disagree that we can't give you anything. If you have MS, you should not get anti-TNF agents (infliximab, adalimumab, certolizumab). However, there are other choices out there, depending on the severity of your Crohn's. Certainly, if you are doing poorly, I would not avoid treating your Crohn's because you have MS. The most important aspect of your Crohn's care is that your neurologist and GI doc are communicating what plans that they have for you.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2016
Q: I have UC and have been on Remicade for 1 ½ years. A recent colonoscopy shows that all my ulcers are healed. All my blood work is normal. Should Remicade be stopped and my medication options go back down the treatment pyramid to an immunosuppressant or 5ASA as a maintenance drug?
A: This has been studied by several centers, mostly in Crohn's disease. You mention a lot of good things: you have been doing well symptomatically, you have "mucosal healing" on a colonoscopy, lab work looks good. Because of this, I personally would have a conversation with you about de-escalating therapy, likely to another immunosuppressant. However, the rates of flare are about 50% in the first year, so other doctors may have the "don't fix what is not broken" philosophy and tell you to continue these medications. The good news is that if you go down on therapy and have a flare, most patients can regain their remisison if they restart remicade and nowadays, we do have more options for therapy. So I personally don't have a problem if people want to try and de-escalate, provided that they are in a deep remission (symptoms and colonoscopy looking good).
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: My 25 year old son with CD has been on Asacol HD for the past 7 years. He recently had a major flare up and has been sick for the past month. His doctor said that his condition has significantly worsened and has recommended humira. Is that a medicine he can be on long term? Is there a better alternative? With limited prescription coverage how can he afford this medication?
A: Asacol is often not enough to manage sick patients with Crohn's, so yes, I agree that he should be escalated to something more effective. There are alternatives, but I agree that he most likely needs a biologic like Humira. The other alternatives (immunomodulators like azathioprine or methotrexate) are another choice, but I believe that they have comparable risks. I usually tell patients that it's a "forever for now" medication. He has a long term condition that needs long term maintenance, and it's much safer to be on a drug for Crohn's than to be sick with Crohn's. I try to emphasize this with my patients who are reasonably concerned about the long term effects of drugs. We have made huge improvements in the care of patients with IBD and that's due to both our understanding of Crohn's, but also the medications currently available. The drug companies have patient assistance programs, so if your docs are wanting to start Humira, for example, the companies will work with you to get the medications.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have CD and have been on TPN (for five years), pantoprazole b.i.d. and Entocort EC and eat only a small amount of highly blended one ingredient food. I will have cataract surgery soon and Nsaid eye drops are recommended after the surgery. Is there stomach or bowel bleeding/irritation risk with this treatment?
A: NSAIDs can potentially cause ulceration in the bowel, but this requires more frequent oral therapy, so I suspect that drops are low risk. It really depends on how bad your Crohn's disease is currently. If you are doing well, I think it's ok to start this and follow your symptoms.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I was diagnosed with Crohn's/Colitis in late 2015. After years of suffering from IBS/Diverticulosis, I tried Lialda; Cort Enema and Uceris with no success. Currently I’m on 6MP 100 mg. for 8 weeks and 30 mg of prednisone for 3 mos. Every time I try to taper prednisone down to 25 mg, symptoms return. I can't handle prednisone side effects much longer. How long should I continue 6MP before switching to something like Humira and why can't I seem to get off the prednisone?
A: Usually, people who can't come off prednisone are called "steroid-dependent" and that's usually a sign that you need to be on more effective therapies. 6MP is a reasonable thing to try, and I usually give 8-12 weeks to see if this will work, in that you should feel better and not need steroids. If this is not the case, then going to a biologic medication like Humira is reasonable. Your GI doctor should be making sure that all of your bad symptoms are related to having Crohn's, as opposed to IBS or C diff, etc.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
June 2016
Q: My dad was diagnosed with ulcerative colitis in 1982 and was recently diagnosed with prostate cancer. Treatment for his cancer involves radiation therapy. The doc said the radiation treatment might impact his uc and cause more inflammation or interfere with his uc treatment. What research or information do you have on how radiation treatment might affect uc?
A: Currently we don't have much information about the impact of radiation therapy to ulcerative colitis. We do know that radiation can cause injury and inflammation to adjacent rectum and you can get radiation induced proctitis. Your cancer Doctor may want to adjust the dose and intensity of brachytherapy accordingly. Active cancer may prohibit the use of certain immunosupressive drugs and close monitoring and ensuring colitis is under control is extremely important.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I have Crohn’s Disease and have used steroids over the years. What is the best way to manage severe knee pain from steroid use?
A: The best way to manage any joint pain in patients with Crohn’s disease or ulcerative colitis is to first explore the cause of the pain. Joint pains can happen due to active disease (inflammation) or other general causes such as osteoarthritis. While bone loss (osteoporosis) is common with steroids, isolated knee pains from steroids are uncommon. You may want to disc uss with your physician if it’s really the steroids or if there are other causes for knee pains. Sometimes you can get muscle weakness from steroids that can cause difficulty walking and sitting up from chair. It should get better after stopping the steroids. You should discuss with your physician if further tests are required to evaluate the knee pain.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I am on Lialda and my GI said I should let surgeons, dentist and other doctors know that I am on this med. Why is it important for other health care providers to know about this medication?
A: It is important that your treating physicians are aware of your medical condition and the drugs you are being prescribed. You should ask your physician if there is a particular concern with this medication that he or she is worried about. In general, mesalamine therapies such as Lialda are safe drugs and don’t require any particular precautions except routine blood tests at regular intervals and monitoring for side effects.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: I am 32 years old and diagnosed with indeterminate colitis in 2006. I’ve been on Remicade for 3-4 years. I am in a flare now but feel ok. The doctor wants to add 6mp. I'm scared of side effects and would like to get pregnant soon. He says 6mp is OK in pregnancy. I would like more info on this medication and if I feel ok should I be taking something that strong?
A: The goal of therapy in inflammatory bowel disease is to not only control symptoms but also to ensure that inflammation is also improving. If you have active inflammation based on symptoms, laboratory tests or recent endoscopy, it is very important that before conception, diseasesymptoms and inflammation gets under control. Active inflammation at the time of conception or during pregnancy can bring bad outcomes to both mother and baby. The benefit of medical therapy during pregnancy to control inflammation outweighs the risk of side effects in most cases. You should have discussion with your physician regarding the choice of therapy, rationale for the therapy and side effects and then decide if this is right for you.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I am a 47-year-old male with CD. I have a lot of commitments at work, home, and in the community. I am suffering from bouts of extreme exhaustion, weakness in my legs and a stiff, sometimes numbing sensation in my ankles. I had a resection I'm 2004 and my doctor considers me to be in remission. But I have daily problems with diarrhea and discomfort. I take Entocort and 6mp, along with two tablets of Lomodil to control diarrhea. How can the exhaustion, diarrhea and discomfort be manage
A: There are many reasons for fatigue and exhaustion in Crohn’s disease. Anemia, such as iron deficiency anemia, nutrient deficiencies such as vitamin B12 deficiency and poor sleep c an contribute to the symptoms of fatigue and tiredness. Sometimes, it could be the drugs contributing to fatigue as well. Ensure you discuss these issues with your physician. There are also multiple causes of diarrhea after surgery such as recurrence of Crohn’s disease, short gut syndrome and bile acid diarrhea as some of the most common causes. You may want to discuss with your physician about these causes and other reasons for diarrhea.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I'm a female in my 20s and diagnosed with severe UC April 2015. I've had several courses of Lialda, prednisone, Asacol, delzicol, and so far nothing has really worked that well for me. My doctor wants me to either start Humira or possibly Remicade within the next month. My concern is that I also was diagnosed with peptic ulcers in 2008. Will either Humira or Remicade affect my ulcers in any way?
A: Anti TNF drugs such as you mentioned are not known to cause stomach ulcers.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I was diagnosed with UC 12 yrs. ago. I take 3 1.2 mg Lialda tabs/day and that works pretty well. I haven't had flare up in a while but recent colonoscopy showed inflammation in multiple areas: transverse, ascending, etc. The dr. has prescribed 50 mg 6MP per day but I don't like the side effects (funny feeling in mouth, drinking lots of water=have to pee constantly, achy, tired). I Do NOT want to take this but doctor warns of cancer risk. Any advice or alternative treatment recommendations
A: The goals of ulcerative colitis treatment include symptom relief, healing of mucosa and minimize the risk of hospitalization and surgery. Persistent inflammation not only increases the risk of colon cancer but also increases the risk of future flare. Discuss with your physician about alternative choices if you are not comfortable with the choice of drug therapy. Different strategies can be applied when one sees active inflammation on the endoscopy in ulcerative colitis, including optimizing the current therapy (such as increasing the dose), adding immunosuppressive drugs such as 6 MP or even consideration to add biologic therapy. It will be a discussion between you and your physician regarding the risk with therapy escalation vs. risk of untreated inflamed colon.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
May 2016
Q: I’ve had proctitis for many years and my condition recently progressed into ulcerative colitis where I go to the bathroom over 20 times per day. I have tried Budesonide, other steroids, canasa, lialda and apriso yet my condition has worsened. My doctor has recommended Humira. What is the response rate for uc patients on this medication? Is there any hope that this will help put me back in remission or should I ask my doctor about another course of treatment?
A: Humira (adalimumab) is FDA-approved for the treatment of ulcerative colitis. It does induce remission and also maintains remission in those who are responding. Just as with the other medications that you have tried, Humira (adalimumab) does not work for everyone but would be an appropriate treatment for your condition. In the randomized controlled trials that led to FDA approval of Humira (adalimumab), the remission rate was around 20%. It is difficult to translate that number to your likelihood of responding because patients in trials often have lesser response rate than we see in real life use. In that study, it appeared that extensive colitis (having more colon involved) and very high CRP (an inflammatory marker) were predictors of a non-response.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: I will be starting the drug 6MP 50mg soon for my Ulcerative Colitis. What can I expect in starting this new medication? My doctor is currently weaning me of Prednisone. Will my appetite decrease during treatment? Any tips would help greatly?
A: 6MP is one of the common medications used for ulcerative colitis and may allow you to successfully stop prednisone. You should notice that your appetite returns to normal as you taper off prednisone. In addition, stopping prednisone can minimize any other long-term side effects of prednisone. After starting 6MP, you may notice some nausea or decreased appetite. I would recommend taking the dose at bedtime or with a meal to minimize this. This nausea often improves as your body adjusts to the new medication. 6MP can affect your white blood cell counts and your liver tests. This will not cause you any symptoms, but it is important to follow your doctor’s guidelines on lab testing to check for this side effect. About 1-2% of people can develop pancreatitis (inflammation of your pancreas) related to 6MP. Pancreatitis can cause pain above your belly button with nausea and vomiting. If this occurs, you should call your doctor because it reflects an allergy to 6MP, and the medication should not be continued.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: What is the benefit of infusion as opposed to injections of medication?
A: When considering the benefit of different medications (whether injection or infusion), the more important factors are which medications that you are considering and your personal inflammatory bowel disease story. I consider choosing injection or infusion as a very individualized decision, and I would recommend discussing your expected disease response with your gastroenterologist. I also consider your lifestyle when making this decision. With injection therapy, you have freedom to self-administer the medication without spending time at an infusion center. You also have more freedom to travel by taking the medication along with you on trips. Some people have difficulty imagining giving themselves a shot. However, with training, this often becomes an easy task. With infusion therapy, you need to have a set appointment to get your medication. This is often every 8 weeks, so between doses you have the freedom to forget about the medication. It is more difficult to get infusions while traveling, but you travel without medication for those 8 weeks.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2016
Q: I've had UC for 30 plus years and have recently been diagnosed with a rectovaginal fistula at the dentate line. It has been recommended that an abdominal proctocolectomy with an end ileostomy be performed due to the fact that the fistula will be at the level of the cuff if any pouch is made. Does this require an open surgery and is there any way that a pouch or IPAA can be successful?
A: A rectovaginal fistula is a communication between the rectum and the vagina. Most are due to obstetric injuries. Other causes include irradiation, malignancy, congenital malformations, and inflammatory bowel disease. Rectovaginal fistulas are uncommon complications of chronic ulcerative colitis, and are more often associated with Crohn’s Disease. Many are asymptomatic and found incidentally. If the fistula is symptomatic, methods of treatment such as excision and primary layered repair, fistula plug placement, endorectal mucosal advancement flap can be performed. Success rates range from 50-95%. Rectovaginal fistulas associated with Inflammatory Bowel Disease have lower success rates. Having UC for 30+ years places a person at risk for the development of dysplasia and malignancy. Surveillance colonoscopies are done annually to identify these changes. If high grade dysplasia or malignancy is found, a total procto-colectomy with either end ileostomy or construction of an ileal pouch-anal anastomosis is performed. These procedures are also done for medically refractory cases of ulcerative colitis. Removal of the entire colon and rectum with creation of an end ileostomy is usually performed if the patient has poor anal sphincter function and incontinence is an issue. The total procto-colectomy with ileal pouch-anal anastomosis or “J-pouch” procedure restores near-normal bowel function by creating a neorectum from the terminal ileum. A mucosectomy (stripping the mucosa of the anal canal to the dentate line) with a hand-sewn pouch-anal anastomosis can be performed. Mucosectomy is often associated with injury to the anal sphincters, and impaired fecal continence may be a problem post-operatively. A diverting loop ileostomy is usually performed to allow the anastomosis to heal, and the ileostomy reversed 8-12 weeks later. The operation can be done via an open or a laparoscopic approach. A pouch procedure may be an option for you.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2016
Q: My Daughter is in her 50's and has had Crohn's most of her life, losing many feet of intestine due to surgeries. Many body parts are able to be replaced...heart, liver, lungs, skin, etc...why can't the intestine be replaced?
A: Despite advances in medical therapy for Crohn’s disease, a large proportion of patients with Crohn’s disease will require surgery within 10 years following diagnosis. Repeat surgical resections may result in short bowel syndrome, or an inability to absorb adequate fluids and nutrients. These individuals may require ongoing use of intravenous total parenteral nutrition (TPN) for nutrition. In patients beginning to fail TPN, small bowel transplantation may be considered. However, experience in small bowel transplantation for inflammatory bowel disease is very limited. Outcomes are generally poor, with low rates of survival at 5 years. Complications of the procedure include organ rejection and recurrent infections due to immunosuppression. Small bowel transplantation for Crohn’s disease may be life-saving in a small number of patients, and this procedure may become more common as surgical and postoperative care improve over time. However, further research is needed to better understand bowel immunology, the role of the gut organisms (microbiota) both in Crohn’s disease and in rejection, immune pathways involved in Crohn’s disease and intestinal transplantation, to improve outcomes with small bowel transplantation for Crohn’s disease.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: I have UC and after long term steroid use I’ve gone from a normal bone density reading of 1.2 (2 yrs. ago) to a 10. PC wants me to start on BONIVA 1 pill per month. I am currently on Entyvio. Can Boniva cause side effect or trigger UC symptoms?
A: Bone density loss is a common side effect of steroids and requires aggressive treatment. Drugs like Boniva can be used in patients with ulcerative colitis and usually do not cause a flare in symptoms. However, GI side effects such as abdominal pain, constipation, or diarrhea can occur. There are no reported interactions between Boniva and vedolizumab (Entyvio).
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I have had Crohn's disease for 25 years. I am on Remicade and Pentasa. I have recently been diagnosed with Peripheral Arthritis. The rheumatologist recommended methotrexate. Are there other medications that can help with the symptoms besides going on Methotrexate?
A: One option is an older drug, sulfasalazine, which can reduce joint inflammation. It could be substituted for Pentasa since it is a combination of a sulfa antibiotic and 5- ASA (the active drug in Pentasa). However, it can also be associated with side effects such as headache, nausea, and abdominal pain. It cannot be used if you have a sulfa allergy. Low dose Prednisone can also be used but side effects make long term use difficult. A third option would be celecoxib, a non-steroidal anti-inflammatory drug which may cause less intestinal irritation. While this may be effective for the arthritis, it can be associated with a flare of your Crohn’s Disease.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: My 22 year old son has had Crohn's for 14 years. He has been on Remicade for the past 9 years. He recently relocated and his new doctor immediately suggests a colonoscopy then switching to Entyvio because possible side effects are less. He has been symptom free while on Remicade so I'm questioning why switching since it currently works and he has had no adverse reactions. Should he make the switch or stay with the current course until it stops working or a flare up?
A: If he has had disease that was visualized by colonoscopy in the past and he has not had a recent exam (in last 2-3 years), it might be reasonable to do a colonoscopy to confirm that he is in full or “deep” remission. If remission is confirmed, there is no current data to suggest that switching to vedolizumab (Entyvio) is any safer. If he has significant inflammation noted, a change in treatment may be warranted. An observational study called TREAT does confirm the relative long term safety of infliximab (Remicade).
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I was diagnosed with UC in 2012. I am in remission with lialda. My AST and ALT liver enzymes have gone from just slightly elevated (a couple points above normal range) to 152 and 214 respectively in three months. I am a non-drinker, not overweight, do not have diabetes. Can this be a medication side effect? Should I be concerned?
A: Though any drug can cause elevated liver enzymes, this is not a common side effect from mesalamine (Lialda). Drug withdrawal may be the only way to prove or disprove this, short of a liver biopsy. There are a number of other causes that need to be excluded, including viral, autoimmune, and metabolic diseases. There are blood tests that can screen for these. An inflammatory condition of the bile ducts called Primary Sclerosing Cholangitis (PSC) can be seen in patients with ulcerative colitis. This is usually associated with elevations in your serum alkaline phosphatase in addition to the AST and ALT. If further blood tests do not reveal an answer, an MRI exam of the liver and bile ducts may be warranted.
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John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: Our 13-year-old son was diagnosed with CD in 2014. He has been responding well to treatment with Apriso and Mercaptopurine (6mp). However, he has developed severe acne, molluscum contagiosum, and recently, a mild case of shingles. He also has hyperpigmentation across his upper chest. We test the symptoms accordingly, but is there anything complimentary treatment to help protect and soothe his skin, such as coconut oil or other treatments or remedy?
A: The skin issues were not caused by IBD so it is hard to say if any specific medications could have prevented them. Molloscum contagiosum is caused by a pox virus. When taking immunosupression such as the 6mp, molloscum may have more lesions and may last longer. Shingles is also caused by a virus and caused by prior exposure to the varicella zoster which causes chicken pox and gets reactivated. The immunosuppression may have increased the chance of this occurring. Acne is common in a 13 yo. Use of prednisone may increase the chance or worsen acne. Use of Isotretinoin is controversial in IBD patients as there are some case reports of symptoms of IBD starting after this medication. There is not current evidence to confirm or refute this. Most other acne especially topical ones should be ok One definite association is that use of 6MP/imuran increases the risk of skin cancer over a patient’s lifetime. In patients that use or have used 6mp, it is recommended that they use sunblock, wear protective clothing to reduce sunlight exposure and have yearly visits with a dermatologist. Alternative therapy which may have benefit, one could consider would be manuka honey, aloe vera and tumeric and water. There is not much data to recommend but there is likely not much side effects. There are some skin manifestations that have known associations with IBD. The first is called erythema nodosum which tends to be tender red nodules on the shins. It occurs in about 15% of IBD. It is usually self-limiting meaning it goes away with out any treatment. Pyoderma gangrenosum is more rare at 0.4 to 2%. It generally looks like ulcers and the most common place is on the leg. Psoriasis causes red and scaly patches that may be itchy and shares some genetics with Crohn’s disease so it can be more common in patients that have Crohn’s compared to the rest of the population. It has also reported to be a side effect of anti-TNF medications.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: My son is 17 and diagnosed with uc at age 15. He is suffering from severe insomnia and has missed a lot of school this year due to his sleep issues. What is the best treatment for insomnia? Can his UC medication cause insomnia?
A: Sleep is important in IBD. It is both important in that fatigue is a common complaint in IBD as getting quality sleep may help with. There is also thought that getting insufficient amount of sleep is pro-inflammatory. It has been shown that sleep disturbances is common in IBD with both patients with active and inactive disease. Sleep disturbances are worse If disease is active, patients may have stooling overnight which may cause them to get out of bed often and make it difficult to sleep. Prednisone may cause patients difficulty trying to sleep. This often improves on lower doses and further after stopping the medication. There is less insomnia if all of the medication is taken in the morning. Some patients with inflammatory bowel disease may have depression or anxiety which may affect sleep. Some patients may also have increased fatigue, which may cause them to be in bed during the day. This poor sleep hygiene may affect the ability to fall asleep during an appropriate time. Daytime sleeping should be avoided. Trying to exercise in the morning and not at night might be helpful. If the above does not work, consider discussing trying melatonin with you son’s physician.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: My daughter is 12 years old and was diagnosed with severe Ulcerative Colitis 5 1/2 months ago. She started on Remicade in December and her ESR and CRP are in normal ranges and her iron is back up. About 48 hours after her 3rd infusion, she experienced severe stomach pains that were intermittent for 2 days. She has also continued to have some mild bleeding (not with every stool) and days of discomfort and stomach aches. Is this reaction typical with Remicade use?
A: The common symptoms for Ulcerative Colitis include diarrhea, abdominal pain and blood in stool. The improvement in the inflammatory markers is a good sign and likely the Remicade is causing an improvement in the colon. It is unclear just because the inflammatory markers improved that there was a full healing. There is a chance that abdominal pain and bleeding may due to the underlying disease. These symptoms are not likely due to the Remicade itself and are not usually a side effect of the medication. One should consider another cause such as constipation as you did not mention stool consistency. As the inflammation improves, the diarrhea may resolve and hard stool moving through the colon may cause abdominal pain and blood in the stool. If there is hard stool, trial of a stool softner may resolve the symptoms and would suggest the likely cause. Another thing to consider is sending a stool culture and c diff as these infections can also cause abdominal pain and blood in the stool. If symptoms have not resolved, it can be investigated if disease is in remission. Mucosal healing is the goal so if there is not full treated disease then it must looked at how to maximize medical management. If disease in remission then non-IBD causes must be investigated.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
February 2016
Q: Can low dose naloxone be successfully used in treating IBD?
A: Low dose naltrexone represents a potentially attractive therapeutic option in IBD given the safety profile. There have been two small studies to date, one in adults and the other in the pediatric population. Unfortunately for the primary outcome of clinical remission in adults, naltrexone did not demonstrate a statistically significant benefit. They did meet their secondary endpoint of modest clinical improvement by one cut-off used, but did not for the other. Similarly, they did not demonstrate a statistically significantly higher rate of endoscopic remission in those receiving naltrexone compared to placebo, though endoscopic improvement, which can be more subjective, did demonstrate a significant benefit. The drug was tolerated well in both patient populations. Given the mixed data on benefit and lack of longer follow-up, I do think larger confirmatory studies are going to be required before this agent becomes a regular component of IBD therapy.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2016
Q: What progress is being made with Helminth (worms) therapy
A: It has long been hypothesized that Trichuris suis (the whipworm) and other helminths may play an immunomodulatory role. Mouse models have demonstrated that mice infected with these worms have less robust immune responses when exposed to harmful bacterial components that would normally stimulate the immune system, and that this effect may persist for some time after helminth infection. These findings, replicated in vitro using human cells, have prompted several researchers to pursue them in clinical trials (quite appropriately!) In addition to several case reports and case series demonstrating a possible benefit in IBD, there have subsequently been two multicenter placebo controlled trials, one in UC by Sommers and colleagues, and the other by Sandborn and colleagues in CD. In the UC study, there was no significantly increased rate of clinical response or remission, though symptom scores were modestly improved in those receiving the helminths compared to controls at 12 weeks. The CD study was performed only to assess the safety of the therapy, with complication rates similar to placebo. Based on these two studies, I do not recommend the use of helminth therapy in IBD at this time, as further research is required.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
February 2016
Q: Is the drug in clinical trials called Mongersen effective for IBD?
A: Mongersen is a new type of immunosuppressive medication targeting a molecule called SMAD7. Phase 2 studies demonstrated very promising results at 2 weeks, with remission rates of up to 65% and response rates up to 72% depending on the dose. The medication was well tolerated. These results are incredibly promising. However, the data are from a Phase 2 study, which are typically smaller and best designed to determine the optimal dosing for new therapies being assessed, while also measuring initial safety. Larger phase 3 trials are currently being conducted to assess the efficacy and safety of this new drug in a much larger patient population with IBD. We are eagerly awaiting the results of this study, which have not yet been published.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
January 2016
Q: Is there any research on taking birth control pills with IBD? Can birth control pills trigger a flare up?
A: You can take birth control pills with IBD. There is no data associating it with an increase in flares. However, birth control pills and IBD are associated with an increase in blood clots. If you smoke it is even worse (so don’t smoke and if you do, don’t take birth control pills!!!). I recommend an IUD for my patients as it is only progesterone so there is no increase in blood clots. If you do use OCP then use the lowest hormone amount possible.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have ulcerative colitis and chronic Epstein Barr infection. I’ve had both conditions since 2008. I have recently started Entyvio with a rise in my EB levels, but I am continuing with treatment as no one seems to know the significance of a rising level (lymphoma was ruled out). Is there any research or articles on uc and Epstein Barr infection?
A: Epstein-Barr Virus (EBV) is a ubiquitous, with most of the adult human population exposed over the age of 25. The concern in patients with inflammatory bowel disease (IBD:ulcerative colitis or Crohns’ disease) is related to EBV exposure and immunosuppressant therapy. In patients that have not yet been exposed to EBV, there is concern that a new exposure to EBV may induce a lymphoproliferative disorder when a patient is taking an immunosuppressant. There is also concern for reactivation of the virus leading to a lymphoproliferative disorder when taking immunosuppressants. Both scenerios are rare. In a study by Linton et al published in Alimentary Pharmacology and Therapeutics journal in 2013, IBD patients were more likely to reactivate EBV (serum viral EBV DNA detected) and immunosuppressants further increased the risk of reactivation of EBV. Being exposed to EBV is not the same as having active virus. If you have active virus, your medical team will need to weigh the risks of continued medical treatment and evaluate other potential treatment options such as other medical therapies and surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I am newly diagnosed with Crohn's. I had no obvious symptoms, other than iron deficiency anemia. I am 68 years old, and the doc said I've probably had the condition for decades. Results from a PillCam test showed ulcers in the small intestines, and blood work showed 2 markers suggesting Crohn's. The doctor put me on Pentasa. I never had any symptoms before, but with the medication I now get mild pain and gas. Can this be a medication side effect?
A: Gastrointestinal symptoms (abdominal cramping and diarrhea) can occasionally occur with Pentasa and cease immediately after discontinuing Pentasa, a type of 5-aminosalicylate (5ASA). This is not an uncommon side effect of a 5-ASA. I recommend notifying your prescribing physician so alterative therapies can be considered.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2015
Q: My 15 year old daughter was diagnosed with UC about a year and a half ago. She has been on Remicade & Pentasa for the last 6 months. She tried a 6mp over the summer and developed pancreatitis. Her doctor would like to try methotrexate now. Can you tell me more about this treatment and if a patient can experience symptoms similar to 6mp side effects?
A: It's not clear from the question whether your daughter is currently symptomatic, but I'm taking from the question that she is not. I suspect the situation is that your provider is interested in combination therapy which does seem to increase the likelihood of response, as well as prolong the benefit, of anti-TNF therapy (Remicade). The specific risk:benefit assessment should be discussed with your gastroenterologist, but under the right circumstances- such as trying to prevent or decrease the production of antibodies against Remicade- there may be a role for methotrexate. This would not be the right forum to discuss the side effect profile of a drug, but methotrexate does not have the same association with pancreatitis as 6-MP. If the decision is made to proceed with methotrexate it may administered orally or as in injection once weekly. Some laboratory monitoring is typically utilized at the outset, but it is generally well tolerated. While not generally utilized independent of other drugs in ulcerative colitis, it can be quite effective used as described above to aid in efficacy and in prolonging the benefit of Remicade.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
December 2015
Q: My 6 yr old was diagnosed with uc 6 months ago. Shortly after his diagnosis and a couple MRIs, his doctors diagnosed him with Chronic Recurrent Multifocal Osteomyelitis (CRMO). CRMO has caused constant leg pain. His CRMO symptoms appear to worsen whenever he is having a UC flare. He currently takes methotrexate injections. There is not much literature about this dual-diagnosis. How successful are the two diseases are managed. What is the prognosis for patients with these conditions?
A: CRMO is quite a rare condition and the reports of its association with IBD are rarer still, but there has been some literature accumulated over the past 15 years or so mostly through small case series. There are no specific guidelines regarding management of CRMO and IBD, but general consensus at this time seems to be that for most patients controlling the bowel disease leads to control of the CRMO. Many of the drugs that have been discussed for management of CRMO are also used to manage IBD with the possible exception of pamidronate. Over time CRMO seems to follow a course of waxing and waning symptoms, but when associated with colitis, while there is limited literature, a reasonable target would seem to be control of the bowel disease first with specific and independent therapeutic consideration of CRMO only if symptoms linger once the bowel disease is quiescent.
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Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
November 2015
Q: I've been experiencing an UC flare up since August 2013. I took lialda and asacol without any major improvements. In September 2014 my doctor put me on 40 mgs of prednisone and 200 mgs of 6mp. This medication regimen initially helped but by Aug 2015 I was back into a severe flare-up. In Aug 2015 I had my first Remicade infusion and responded very well. After 2nd infusion my symptoms came back. Now my doctor wants to try me on Humira. What are the chances humira can get me into remission?
A: Tough to say. It might be that initially you got the best response from the prednisone and the 6MP may not have helped. The Remicade sounds like it may have helped so unless you have developed antibodies to it (which can be checked with a test) you may just need to have your dose increased if this has not been done. The other option is to consider an adjunct medication like methotrexate which can help on its own and boost the efficacy of the Remicade. 6MP works like this as well. We call it dual therapy because you would take both Remicade and methotrexate or Remicade and 6MP at the same time. It would be good to exhaust the Remicade option before moving to Humira which is very similar to Remicade. Lastly they could switch you out of class to Entyvio which works a bit different than Remicade and Humira if these other things don’t work.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I have Crohns disease, and pain is a major factor in my daily life. Where can I go to have a doctor evaluate me and get me on a long term pain medicine? I would like to know if going to a pain management center is a good option?
A: Pain management is a good option so that you can have a good pain regimen that does not lead to addiction. The ultimate strategy however is to deal with any underlying reason for the pain ( ie inflammation, stricture, obstruction, adhesions, abscess etc.). By dealing with these underlying causes of pain, it should eliminate or lessen the need for pain medications.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I’m on pain meds for Crohn’s. I went from oxycodone to fentanyl patches. While reading the side effects it says constipation is a side effects, which I don't have and diarrhea which do have. What is the best pain medicine to take with Crohns?
A: You will need to work with your provider to figure out where the pain is coming from as each type of pain is addressed differently. The ultimate pain medication is NO pain medication. Pain medication is a band aid. It is best to identify and treat the underlying cause of the pain so that no pain medication is needed.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I am thinking of switching from Remicade to Entivyo due to skin rashes. Remicade has kept me in remission for 10 years. What is the likelyhood that I develop rashes with Entivyo?
A: It is very unlikely that you will develop skin rashes with Entyvio. We often switch people from Remicade to Entyvio if they are getting rashes. The only thing that is not known is if the Entyvio will work for you as well as Remicade. So if the rashes are only minor, you may want to consider staying with Remicade and treating the rashes topically with a cream. But if they are severe or debilitating then switching to Entyvio might be a better option.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I had an ileo-colic re-section in May 2014 after structuring Crohn's in my ileum. I had a follow-up colonoscopy at 6 months that was clear with no disease. I am currently on no meds. What interval and testing do you suggest for surveillance going forward? At what point would most doctors initiate medical treatment ? I am in a low risk category, age 56, disease onset age 47 and non-smoker.
A: Some providers would start you back on a biologic within a few months post surgery to be safe and avoid the constant monitoring. Others would just closely monitor your progress and at the first sign of inflammation, start you back on a biologic medication. Either way, you are correct that close surveillance will be warranted. The best tools we have for monitoring this is a CRP and fecal calprotectin. CRP is a blood test that will let us know if there is any inflammation in your system but this is not a reliable marker for everyone. Fecal calprotectin is a stool test that is much more specific and reliable as a marker of gut inflammation itself. If any of these were elevated or if there was any question about the test results vs your symptoms then a colonoscopy would be the next step to evaluate how you are doing. We try to avoid serial colonoscopies however by using either or both the CRP and fecal calprotectin as a more regular form of surveillance.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I was diagnosed with Crohn's 3 years ago. Since then, I have had hemorrhoids with a lot of bleeding, ulcers, inflammation and started Humira because of a burning sensation in my upper-center stomach. I've been on the Humira for 3 months and the burning sensation is back. I've told my doctor and no action has been taken. The pain almost leaves me crippled and unable to walk around to accomplish daily activities. Is there anything I can do for this pain or something I should be telling my doctor?
A: I am sorry to hear of this pain. The question is why are you having this pain? Keeping in mind that Humira (generic adalimumab) is not a treatment for hemorrhoids, is it possible that you have Crohn’s disease and the “hemorrhoids” are actually swelling in the area from active Crohn’s disease? If so, this is likely the reason why your doctor started you on Humira. The discussion now needs to center on finding the cause for your pain—is your Crohn’s active elsewhere in your gastrointestinal tract? To answer this question may take more testing to look for such IBD related inflammation.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My 30 year old daughter with cd has had shingles 2 times in the last 5 years. Her GI has recommended that she take Humira. He wants her to get a shingles vaccine prior to starting treatment. How effective is the shingles vaccine in patients on a biologic therapy?
A: This is a great question for your daughter to also discuss with her primary care physician. If it is decided to take the shingles vaccine, bear in mind that this is a live viral vaccine and must be given at least 6-8 weeks before any immune modifying therapy such as Humira is started.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: I was diagnosed with UC in 2014. This past spring my UC flared up and I began to bleed when I took Zyrtec for my seasonal allergy problem. I am having problems again with my allergies for fall. I am unsure which allergy medicine to take. I am almost in remission with my UC and I don't want any more flare-ups. I am presently taking Lialda, Rowasa and Anusol Supplement. I only take Tylenol for pain when needed. Is there an OTC allergy medicine that will not trigger a flare up?
A: It is a general rule in medicine that any given person can have any given side effect on any given day. That being said, it is not generally reported that well controlled UC will become active from taking Zyrtec. Therefore, it seems fine to try it again keeping in mind that a second such experience should prompt you to take a different allergy medicine.
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Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My son is 24 yrs. old and has had Crohns for 12 yrs. I have been doing a lot of research on the use of medicinal cannabis oil and the relief of Crohns symptoms. Any research on medical cannabis oil and if it is used does it show up in your urine?
A: My understanding is that depending on the dose, this can change a urine drug test positive. Regarding its use for Crohn’s disease, marijuana is used recreationally because of its mood altering affect. Recognizing this, it can affect how one feels. Whether it actually has a biologic effect on the disease process of Crohn’s is currently under investigation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2015
Q: Are there specific tests that identify TNF as the source of active ulcerative colitis inflammation, or are biologics just automatically tried if immunomodulator doesn't induce remission? I have mild to moderate kidney dysfunction and a family history of lupus. The prospect of starting Humira scares me, especially since I work in a public setting where exposure to infection is constant.
A: In clinical practice, there are not TNF tests available. Because of studies showing that a significant percent of people with ulcerative colitis have a good response (and a higher percent than respond to immunomodulators), they are frequently used when immunomodulators are not helping. All of these medications do carry risks that should be considered, but often the benefit of controlling difficult to manage ulcerative colitis outweighs those benefits.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: My son with Crohn's is on Remicade. He is in college and trying to arrange a semester abroad in Tokyo, Japan. How can we find out if Remicade is even available in Japan? We have tried speaking to pharmaceutical company that makes the medication but to no avail.
A: Remicade is available in Japan. It would require careful planning, but travel abroad can be accomplished successfully. Your son would need to quickly establish care with a GI provider in Japan who would be able to provide the Remicade while he is abroad. His care provider here may be able to help find a hospital or provider that would be appropriate.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have Crohn’s. I am also taking chemotherapy for uterine cancer and it causes severe diarrhea. I plan to take a combination of Questran (cholestrymine ) and Imodium during the next round of chemo. Lomotil no longer works for me. What other diarrhea control products are available?
A: Diarrhea due to chemotherapy can be challenging to manage, especially when you also have Crohn’s disease. Your plan of Immodium and cholestyramine sounds like a good next step. There is a stronger medication that can help to slow diarrhea, but it is a narcotic medication. If the maximum doses of Immodium and cholestyramine are not effective, you would need to talk to your care providers about the downsides of other options and whether it would be appropriate to try a stronger medication during this time.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have severe Crohn's. I am on Pentasa 4,000mg/day, Purinethol 50mg/day, Prednisone 20mg/day and just had my 3rd Remicade infusion and I am seeing no relief. I am very concerned about the Remicade and Purinethol treatments as I am seeing no benefits. I am also experiencing side effects from the Remicade that concern me. After each treatment I experience confusion, a drastic drop in blood pressure, trouble focusing the eyes and flushing in the face, should this treatment be discontinued?
A: It sounds like you are really struggling to get your Crohn’s disease under control. I would recommend that you meet with your doctor to review your response to the medications and any side effects that you are having. I can not say whether the treatments should be stopped without seeing you, but your care provider should be able to provide that guidance. I try to give Remicade around 12 weeks to see if it is effective. I then use symptoms and other tests (sometimes labs, imaging, or endoscopy depending on the patient) to help make this decision.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I have CD for 21 years. I am currently on 6mp 50 daily (I cannot tolerate higher dose, it affects my liver) and 1.2 Lialda 4 daily and once again in a flare up. I have tried Humira and Remicade. I have been on prednisone many times in the past and will not go back on. I've also taken Entocort and meslamine. What are your thoughts on Ustekinumab?
A: Ustekinumab is a medication currently used for psoriasis that works by blocking inflammatory proteins called interleukins. There are early studies showing promise in the treatment of Crohn’s disease. Because it does not block TNF, it offers a new mechanism for treating Crohn’s and may be a good option for patients in whom Remicade and Humira have had no effect. It is not yet FDA approved for Crohn’s disease. On an individual basis, it might be the best next treatment for certain patients. Your care provider would need to help you make this decision and see whether insurance coverage would be possible for your individual case.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I just read that Humira has a success rate being 50-60% in mild to moderate cases of Colitis & Crohn's. What is the success rate of Remicade for severe cases of Crohn's? Given the side effects I am having I am considering going off treatment, but I am concerned as I am told that if I need to go back on it, it may not work because the body builds up antibodies against the drug.
A: In patients newly diagnosed with moderate to severe Crohn’s disease, combination therapy with Remicade plus immunomodulator has about 56% chance of steroid free remission at 26 weeks and Remicade alone has about 45% likelihood of steroid-free remission at 26 weeks. This study is not looking at patients who stopped therapy. Stopping therapy does increase the chance of anti-drug antibodies and loss of effectiveness in the future. I would recommend an honest discussion with your care provider before stopping any therapy.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
October 2015
Q: I am currently on Lialda, Canasa, 6-MP, Simponi, levsinex, VSL#3 and miralax. I’m allergic to Remicade and after a year humira didn't help anymore. My stool is mostly formed but the issue is mucous and blood leakage especially when passing gas and before each BM. I’m trying non RX such as l-glutamine and amp floracel. Are there other treatment alternative options?
A: Curcumin has had some evidence showing benefit for mild symptoms. There are other alternative therapies that you will read about on the internet, but they do not have traditional evidence showing benefit in inflammatory bowel disease. That does not mean that they don’t work, but we just do not know enough about them to be able to recommend them at this point. I always recommend keeping your provider involved so that they are aware of everything that you are taking (even supplements). In addition, it is possible that your symptoms are mostly rectal and a topical mesalamine suppository or enema could be helpful.
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Karlee Ausk, MD
associate director of the Swedish IBD Center
September 2015
Q: What can be done for chronic pain caused by abdominal adhesions brought on from many surgeries for Crohn's Disease
A: Every surgery creates new scar tissue, or “adhesions”. In general, surgeons try not to operate to relieve abdominal pain thought to be caused by adhesions unless there are associated symptoms such as intestinal blockage or obstruction. A thorough evaluation should be performed prior to any planned surgery to rule out causes of pain due to other factors. An Upper GI/ Small Bowel Follow Through study is a radiographic study where one drinks contrast and then multiple X-rays of the abdomen are taken to evaluate kinks or twists in the bowel. If these are found, a patient may benefit from surgery and lysis of adhesions. If contrast flows through the intestines without delay, surgery will not likely help the patient. An interventional procedure called a splanchnicectomy can be performed to deaden the intra-abdominal nerves by injecting the nerves with alcohol. This procedure can be done operatively or by interventional radiology, but is used rarely. Medical management of pain might best be treated by a Pain Specialist who can combine medical and complimentary alternative medical strategies to relieve pain.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2015
Q: I am a 35 year old male and my doctor is suggesting that I begin 6MP and Remicade treatment for Crohn’s. My wife and I are trying to start a family and I am concerned about the side effects of the medicine as it relates to infertility and birth defects. What medications should be avoided?
A: The only medications to be avoided are Methotrexate in young female patients of childbearing age and Flagyl. Many studies have shown that 6MP and anti-TNF agents do not lead to birth defects or infertility and are safe before and through pregnancy. There is an incidence of pre-term birth and low birth weight associated with Crohn’s disease itself. Best time to conceive is when disease is in remission. The biggest mistake is stopping medication which results in a flare of IBD and impaired health of the mother. Remember, healthy moms have healthy babies; and sick moms have sick babies. Men can use Methotrexate before conception with no problem of fetal abnormality or infertility.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: My GI is trying me on Lialda. I took it for a month no real problems. I woke up with severe back pain 5 days ago, also bloated, and sick. I stopped the Lialda and back pain subsided. Started taking again to control bloating and the back is in pain started again. Could these symptoms be side effects of the medication?
A: Lialda is a safe medication. It is unlikely a cause of back pain and bloating. Lialda is not indicated for bloating, but for the treatment of IBD. I would suggest checking biomarkers (CRP and fecal calprotectin) to see if your symptoms are due to a flare of IBD. Rarely, 5-ASA drugs (such as Lialda) can cause a worsening of IBD symptoms because of an “allergy.”
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am 63 and have Crohn’s Disease. I had one blockage about three years ago and I have a bladder infection almost monthly. I am on Lialda and have also been on Entocort. Now my doctor wants to try me on Humira. With so many bladder infections, would taking Humira make it worse?
A: First need to determine the cause of frequent infections. Is it related to a complication of IBD? If so, then Humira is probably indicated to control IBD. Humira can cause reactivation of disease (TBC, Histoplasmosis, CMV, etc.) but does not cause serious infections. Humira should not make it worse, and in fact, may make it better.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I was diagnosed with Crohn’s approximately ten years ago. Pentasa worked very well for me for nine years. The past six months I have been on Lialda without success. My doctor is suggesting Humira or Remicade infusions. I am very concerned about the side effects of both meds. How do I decide which drug to try first?
A: Both medications are anti-TNF biologicals with similar mode of action. Both have the same effect in producing response and remission (60% for both, 30% long-term remission for both). Infliximab (Remicade) is given IV at 0, 2, and 6 weeks, then every 8 weeks. Humira is given at 0, 2, and 4 weeks and self-administered subcutaneously with a shot every 2 weeks. Some physicians feel that Infliximab works better for Ulcerative Colitis than Humira. In final analysis, the choice is up to what the insurance company or HMO will allow. Both drugs have the same adverse events.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: My state has not approved medical marijuana. Would Marinol (Dronabinol) be a good alternative to help with increasing the appetite of cd patients? What are the risks and benefits of this medication?
A: There are more risks than benefits. Marinol has been used to stimulate appetite and prophylactically to prevent nausea and vomiting in cancer patients on chemotherapy. There are multiple psychiatric and gastrointestinal adverse events as well as cardiac side effects secondary to sympathetic stimulation. It is not FDA-approved for IBD.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2015
Q: I recently started taking Uceris for lymphocytic colitis. I am frequently nauseous and can’t eat. Could this be a medication side effect?
A: While possible, this is not a frequent adverse event with Uceris and is probably an unlikely cause of your problems.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: It is difficult to pass gas and hard to move my bowels. Is Benefiber good to take for constipation?
A: Fiber is good for constipation, if the cause of constipation is insufficient fiber in the diet (the dietary requirement for men is 35 grams daily and for ladies is 25 grams daily). Other choices may be stool softeners or stimulants. It is worth trying Benefiber with increased fluids with or without stool softeners.
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Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2015
Q: I have had active moderate UC for three years, in constant flare with only one remission period when I took a very intensive dose of prednisone for several months, but once I began tapering off of it the remission ended and the side effects were terrible. My doctor said that if the current course of medications doesn't work, I should either go back on prednisone or to Humira or Remiicade. What are the risks and potential rewards of going on prednisone versus a biologic?
A: This is a very good question and without fully understanding the medications you are currently on I will do my best to answer your question. We define remission as a steroid-free remission, meaning that you feel well for at least 3 months off steroids. While steroids have a role in helping us get some patient’s into remission (also known as induction), we also have other medications that are safer than using chronic steroids that have been approved and are effective in inducing remission, some that you mentioned being adalimumab (Humira) and infliximab (Remicade). In fact, these agents are ideal in someone that has required multiple courses of steroids as you are less likely to be able to maintain a steroid free remission without escalation of your therapy. Additionally, while steroids can help people get into remission, they should not be used long term due to side effects, some of which I am sure you have experienced, but others include risk for bone loss, vision changes and most importantly the highest risk for infection complications with long-term use. The anti-TNF based therapies (as you had mentioned) have been approved for both induction of remission and maintenance of remission, which means we can get people feeling well without steroids and keep them off steroids as we “maintain remission”. Biologic based therapies are safe and effective in the management of ulcerative colitis and this has been shown in several studies. We know that chronic exposure to steroids can be associated with worse outcomes for our patients, which of course we would like to avoid.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I have active Crohns and being treated with Humira. I had gallbladder surgery 4 years ago. Since the gallbladder surgery diarrhea worsened and finally bile salt found to be culprit. I'm controlling it with Welchol with meals and Caltrate at night. Is this a common problem for Crohns patients with gallbladder surgery? It took 4 years to get to the bile salt diarrhea because of the active Crohns, previous intestine surgery, etc.
A: Bile acid malabsorption which can present as diarrhea is due to the presence of excess bile acids (or bile salts) in the colon, which leads to stimulation of electrolyte/water secretion, decreased colon transit time and patients will experience diarrhea. There are several conditions that can lead to bile acid malabsorption, one like you mentioned is Crohn’s disease. Patients with Crohn’s disease involving the last part of their small bowel (terminal ileum) are at risk because bile acids are typically absorbed in terminal ileum. This includes patients with active disease, chronic disease and those who have had surgery of this area. In addition patients who have undergone cholecystectomy can also develop bile acid malabsorption that can lead to this same phenomenon. The treatment for patients is to use bile acid binding agents, like cholesevelam HCL (Welchol), which you are on.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I am 52 years old and was recently diagnosed with mild Crohn's Disease. I have had little to no symptoms up to this point. My GI is recommending no treatment or dietary changes, and follow up in one year (from my original colonoscopy). Is this the standard protocol for someone newly diagnosed with mild disease?
A: a. With very mild disease this may be acceptable, but generally only with very mild disease because Crohn’s treatment works best when started early. It sounds like your doctor is, appropriately , planning to keep a close eye on your Crohn’s and will start treatment if any worsening. b. There are no established specific dietary treatments for Crohn’s disease. Dietary recommendations may vary depending on the nature/behavior of an individual’s Crohn’s.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2015
Q: Can a colectomy be performed without ever having to have a bag? I read online and my GI doctor told me that if my intestine is healthy, they can connect the small intestine and anus in one surgery without having to wear temporary colostomy bag?
A: Whether or not to create a temporary ostomy depends on many factors- the type of surgery to be performed, the nutritional status of the patient, whether or not the patient smokes, and whether or not the patient's immune system is compromised due to steroids or other medications. For surgery where the anastomosis (where the bowel is reconnected) is very low in the pelvis, the risk of leak is much higher and most surgeons will perform a temporary ostomy to allow the anastomosis to heal. After 8-12 weeks, after the patient has been allowed to heal, weaned off steroids or become nutritionally better, the ostomy is usually reversed at a second operation. For patients who smoke, are anemic, obese, malnourished or are on steroids, most surgeons would perform a temporary ostomy as these factors all increase the risk of leak. The reason a leak is bad is that stool will leak into the abdominal cavity from inside the intestines. That is a potentially life-threatening condition and usually emergency surgery is performed to wash out the infection and create an ostomy. The bottom line is that the surgeon takes into account all of these factors to decide whether an ostomy will be necessary.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2015
Q: I have moderate pericardial effusion after using Delzicol for two months. Is this a common side effect?
A: The mesalamine products like Delzicol, are used to treat inflammation. Ironically, some of the side effects are inflammation in other organs. For example, we monitor kidney function regularly for something called “interstitial nephritis,” inflammation of the kidneys. There are rare occurrences of other side effects with these medications like pancreatitis and pericarditis. This inflammation around the heart can be seen in about 0.5% of individuals on these medications and can rarely cause an effusion from the leaking of fluids across this inflamed heart tissue. I have never seen this and it is rare. I recommend seeing Cardiologist, trying to stop the Delzicol and see if the pericardial effusion improves.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: I recently started Humira. I am now reading that weight gain might be a side effect and I am very concerned. What is the success rate with this drug? What percentages of patients gain excess weight? I expect some change, but will not continue the drug if I gain a significant amount of weight - It seems like I'd be trading one health risk for others.
A: Weight gain is more of a concern with steroids like prednisone. Humira and medications like this can cause swelling in the legs, but this is a rare occurrence. Usually patients are taking Humira along with steroids initially. The success rate of this drug is about 50-60% in mild to moderate ulcerative colitis and Crohn’s, increased when adding an immunomodulator like 6-MP, azathioprine or methotrexate. We define “success” differently depending on the study but these numbers reflect how likely you will feel better and clinically do better. Less than 5% of the patients gain weight on this product alone. I recommend trying the Humira if recommended then seeing if you gain wait.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2015
Q: My doctor recently put me on Humira. I’ve had three injections so far. I have been on 6MP for about 4 months. My doctor assures me it is safe to take both, but everything I have read says otherwise. What are the risks of taking both medications together?
A: The main risks of taking two immunosuppressants together like Humira and 6MP are infection and cancer. Please make sure you are up to date with vaccinations including flu, pneumonia and hepatitis B. Live vaccines are not recommended while on both these medications. In terms of cancer, the main one we are concerned about is lymphoma. There is also risk of skin cancers so please make sure you see dermatologist annually. In terms of lymphoma, the risk for lymphoma in the general population is 2:10,000. When someone takes 6MP, it increases to 4:10,000. Combination therapy increases this risk to 6-8:10,000. If you are a young male, you have a slightly higher risk of another form of lymphoma called “hepatosplenic T cell lymphoma.” More recent studies looking at over 6,000 patients on these medications reveal that most of the risk for lymphoma comes from the 6MP and not as much from the Humira. New studies also reveal that patients usually need to be on these medications for at least 2 years to have this risk of lymphoma. In my practice and in some others, we use combination therapy then consider stopping the 6MP in 6-12 months for this reason. Another option for young males is to use Humira with low dose methotrexate. Methotrexate cannot be used safely in young females considering pregnancy.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: I have left sided ulcerative colitis. Many times I feel tired and rundown if I do anything physical. I am not sure how long I can keep working. I am 35 years old. Would it be a good idea to get the diseased part of my colon removed now? Will removing the disease part reduce the chances of it spreading? Will having this procedure sooner rather than later lead to a better quality of life?
A: Make sure you have your vitamin D and iron levels checked regularly because this can cause fatigue. I would also make sure you are on the appropriate medications to cause healing on colonoscopy. With the proper medications you should be able to live a relatively normal life. Some patients do still have the fatigue you mention, even when they have no vitamin deficiencies and have well-controlled colitis. If fatigue is the only symptom, having a surgery will likely not help with this. I would recommend also seeing a nutritionist to modify the diet if necessary.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: Is there is any new research into the use of suboxone in the treatment of Crohn’s?
A: I am not familiar with any substantial study looking at this product for Crohn’s. If you are interested in participating in clinical trials for new therapies, please go to www.clinicaltrials.gov for ongoing trials. I could not find any ongoing trials for this at this time.
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Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2015
Q: My 18 year old daughter just had a third major flare and is on prednisone again. We are now facing a decision about maintenance with either Humira or Remicade. Both have some serious warnings, but both seem to be discussed as being quite effective. What advantage is there one over the other for a young adult who is college bound? Would it be impractical to schedule infusions when at college or are they available at most hospitals? What are the pro/cons for either?
A: This is a common scenario. Humira and Remicade both have the same mechanism of action and in most people will have similar effects with little difference between the two. The major difference is that Humira is given as a shot (by injection or prefilled syringe) every 2 weeks while Remicade is given like an IV every 8 weeks. Remicade will require that a patient go to an infusion center for each dose. There are infusion centers in most mid-sized to large cities so it may be prudent to determine if there is one near her college. I would suggest that she establish with a gastroenterologist near her college as well
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s disease about 8 months ago and have been on Lialda but recently have not been doing well. I have lot medication side effects. Is there another drug that is similar that may provide me with less side effects? I am still trying to understand how to control flare ups and wonder if there are any specific tips to help control the symptoms. I am working to limit my drinking and have actually just begun a gluten free diet to try to help.
A: Thank you for the questions. First, I would speak to your gastroenterologist regarding your symptoms and determine if they are due to the Crohn’s or something else. At this point, the two of you can also discuss potential adverse effects from the Lialda. There are other medications in the same family as Lialda and you and your gastroenterologist can discuss the most appropriate treatment plan. By “drinking,” I imagine you are referring to drinking alcohol. Limiting alcohol and a gluten free diet may help but no diet has yet been proven to decrease inflammation from Crohn’s disease that is causing symptoms. When patients have active intestinal inflammation, it may be helpful to decrease high fiber foods and perhaps dairy products and caffeine. I suggest using a food journal to recording food intake and symptoms to determine if certain foods trigger symptoms.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s in Nov 2014. I am on 200mg of 6mp per day. The doctor says I am in remission but I am having strong to almost severe muscle pain, weakness and fatigue. Can these symptoms be related to Crohn’s Disease?
A: Thank you for your question. The symptoms that you describe are not specific to Crohn’s disease and can be seen with many other disease processes and medications. If a thorough evaluation that may include some combination of endoscopic evaluation (i.e., colonoscopy), imaging, and labs has been done to confirm Crohn’s disease remission, then it may be reasonable to evaluate if the dose of the 6-MP is appropriate. This can be done through lab work.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I have Crohn’s and currently on Entocort. Is Entocort a good option for lifetime care for Crohn’s?
A: Good question. Entocort has been studied in Crohn’s disease for up to one year but not beyond. According to these studies, it appears to be most effective within the first 3 months and less effective afterwards. However, some patients may do well on entocort beyond 3 months. The key is regular follow-up with a gastroenterologist with routine labs, colonoscopy, and perhaps imaging evaluating for active intestinal inflammation. During these evaluations, if there is any evidence of nonresponse to entocort or progression of inflammation, an adjustment to your therapy can be made early.
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Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
May 2015
Q: How long do people with crohns generally stay on humira and can that lead to remission?
A: It is very hard to predict the response to anti tnf therapy in a particular patient. Our understanding of the influence of drug and its blood levels in our body system and loss of response is evolving and we are learning that good drug levels are associated with longer duration of remission. Many factors such as body weight, age, gender, smoking, and albumin level and disease burden influence the drug levels. In clinical trials it has been shown that if you respond to a drug there is a fair chance that you will keep responding to the drug for the next few years. Also remember, definition of remission is also evolving. Most physicians now believe that remission means not only the absence of symptoms but also reduction of inflammation and improvement of the inflammatory markers in the blood. All approved anti tnf drugs have shown to induce remission as long as you remain on the drug and the levels of the drug are adequate.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I was diagnosed with UC 2013. I am currently taking Apriso. The doctor has suggested Prednisone or Remicade. I am really scared to take any of these treatments after what I have read about the possible side effects. Are these the only treatment options?
A: There are several reasons for stepping up therapy in ulcerative colitis. For example, lack of response to current therapy, disease progression despite optimal treatment, side effects or intolerance to current therapy may warrant changing the existing therapy. The goals of therapy in ulcerative colitis are to help make you feel better with minimizing the symptoms and also improve inflammation in the colon. Persistent inflammation in the colon increases the risk of colon cancer and also increases the risk of disease progression with future flares and hospitalization. Once the mesalamine therapy ( such as Apriso) has been maximized and consideration to topical mesalamine therapy such as enema in combination therapy with oral pills has been given and your doctor has found that it’s time to move on to other therapies, different options such as immunomodulators ( azathioprine, 6MP) and biological therapies ( such as Infliximab, Adalimumab and Vedolizumab) are available. These therapies are associated with certain risks such as infections and cancers. The risk of infections warrant close monitoring while on the therapy. The absolute risk of cancers such as skin cancer and lymphoma is not high. You have to keep in mind that if left untreated, persistent inflammation also increases the risk of colon cancer and other complications in the intestine. In most of the situations, the benefits of therapy outweigh the risks associated with them. Alternatively, surgery to remove the colon is another option that you may discuss with the doctor. Prednisone therapy is only used as short term as a bridge to long term therapy. Of all the therapies, prednisone is associated with more risks of infections and other complications such as bone loss, skin, sleep and mood disorders.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: My son is in a Crohn’s flare up. He has been taking Lialda, dicyclomine. He has been on Uceris for four days and still in pain and having bloody diarrhea. How long does Uceris usually take before the symptoms disappear?
A: Uceris is a delayed and extended release 9mg budesonide tablet that releases throughout the colon. It is used for mild-moderate ulcerative colitis. Budesonide is a topical glucocorticoid. In a Uceris clinical trial, it took up to 4 weeks for 47% of patients to show clinical improvement. Entocort is another formulation of budesonide that is released in the end of the small intestine and used for mild to moderate Crohn’s involving the end part of the small intestine for right portion of the colon.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: My son has suffered from chronic pouchitis for 18 mos. He would like to start taking probiotic. What is the success of probiotics? How long might it take to make a noticeable difference?
A: Probiotics may help reduce the risk of recurrence of pouchitis after treatment of pouchitis with antibiotics. The studies showing benefit used VSL#3, combination of several strains of probiotics, with dosing of 600 billion colony forming units a day to 900 billion colony forming units twice a day. Probiotics have not yet shown to be an effective treatment of pouchitis.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: After being diagnosed with cd 20 years ago I had 2 infusions of Remicade and then stopped the treatment. Recently I was hospitalized with ileitis. My Colonoscopy showed no signs of active disease but some scarring in small intestines. The CT showed no thickening of intestinal lining or active disease. The antibody tests for Remicade showed none. The GI wants to start me on Remicade. Since there is no active disease, is it possible to start on medications other than biologic therapy?
A: The key point is to determine if the symptoms that lead to your hospitalization were from active Crohn’s disease or something else. If you had active small bowel Crohn’s disease that caused moderate-severe symptoms then medical treatment with an immunomodulator (such as azathioprine/6mercaptopurine, methotrexate) or biologic would be indicated. 5-aminosalicylates have not been shown to stop the progression of small bowel crohn’s disease.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I have Crohn’s but recently been told I have a circumferential narrowing and constriction of my lower cecum. Is this a side effect or Crohn’s? Can this condition cause cancer? I stay bloated and hurt in my upper right side and my middle left side. The GI just keeps telling me it is from Crohn’s disease. How is this condition treated?
A: Since inflammation from Crohn’s disease can affect the full thickness of the intestine that it is located in, there is a predisposition for forming strictures or narrowing. Chronic inflammation involving the colon over many years (>8 years) can increase the risk for developing colon cancer. If you have had Crohn’s for a short period of time and have not started medical therapy, then therapy with medications would be attempted 1st as long as you do not have signs of obstruction or blockage (abdominal distention, vomiting) from the stricture. If you do have signs of obstruction and the Crohn’s is limited to a small area, then surgery may be considered as treatment.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I was diagnosed with Crohn's Disease when I was three years old. I went into remission after being on Sulfasalazine for nine years. I came out of remission my senior year of high school. It has been two years, and I have tried the sulfur pill, remicade, and entyvio. I have also tried gluten free, lactose free, and a cleanse. What other treatment options are available before resorting to surgery?
A: There are still several medical therapy options which include azathioprine or 6-mercaptopurine, methotrexate, adalimumab (Humira), certolizumab (Cimzia), natalizumab (Tysabri). Your gastroenterologist can help determine which medication or combinations of medications are right for you. Sometimes medical therapy and surgery are used together to improve quality of life.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I was diagnosed with UC in October of 2014. My GI started me on Lialda. I stayed on Lialda for 2 months with no change in symptoms (gas, constipation, bloody stool, urgency). At that point GI changed diagnosis to Crohns since I didn't respond to Lialda. I started Humira in January. I have had 2 normal days with no symptoms but all other days are same as when diagnosed, no improvements. Is this normal for Humira? When do I consider other options?
A: Not responding to Lialda® is not a reason to change your diagnosis from ulcerative colitis to Crohn’s disease. There must have been another reason for the diagnosis to have changed. It may take up to 12 weeks to see improvement with adalimumab (Humira) for the treatment of Crohn’s disease. If you have had only 2 normal days since starting Humira then it is not likely working. If your symptoms cycle around your injections, better the few days immediately after but then worsen, then your physician may consider checking Humira drug levels to see if a dose adjustment is needed. If it turns out you are not responding at all to Humira then I would recommend making sure there is not another reason other than Crohn’s for your symptoms such as infectious gastroenteritis from C. difficile infection or other infections prior to starting a new medical therapy for Crohn’s.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I just finished radiation treatment for breast cancer and now am being prescribed tamoxifen as an anti-estrogen therapy. Since my colitis flared up badly after surgery (lumpectomy) I am concerned if there are any contraindications against tamoxifen for patients who have ulcerative colitis.
A: There is no specific relationship between tamoxifen and ulcerative colitis. Of course, every person reacts to treatments differently but tamoxifen should be ok with your UC. There have been a number of hormone studies in IBD and while early data suggested a possible link with hormones and Crohn’s ds, the totality of the data and research since has not shown a link.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I am 29 years old and have been recently diagnosed with severe crohns in my small intestine and mild in sigmoid colon. The doctor prescribed remicade infusion every six weeks. I have not started the treatment yet. What is the lymphoma cancer risk using this medicine?
A: The lymphoma risk using remicade is very low and is estimated at 4-5 in 10,000. Many of these cancers also are early and treatable, responding well to treatment. As always, it is important to balance risks of remicade with potential benefits and risks of not doing remicade. In vast majority of patients, the risks with treatment are far outweighed by potential benefits or consequences of severe disease. It is important to remember that treating early on improves likelihood of response.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: What are the side effects of Prednisone? Do they include mood swings?
A: While prednisone is a good medication for short term use to induce a remission of inflammatory bowel disease, it is not a good long term medication because of its side effect profile. Prednisone can cause emotional instability, headaches, psychic derangements, high blood pressure, diabetes, liver function test abnormalities, problems with bone metabolism, to name a few.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I would like to know what the maximum dosage of balsalazide is. I see that some people take 12 pills a day, and I also saw on a hospital website that up to 6.75-13.50 gm/day can be taken. I am presently taking 12 pills because of a flare but doctor has only prescribed 9, but the 12 seems to help my symptoms.
A: The maximum dose evaluated in the clinical trials and the FDA approved balsalazide dose for mild to moderate ulcerative colitis is a total of 6.75g/day (9 pills a day). I would recommend you inform your physician as to the dose that you are taking which will help them find the most effective and safest treatment regimen for you.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Is it normal to have long, flat, stools that are very painful to pass and never feel like it's all come out? Even though I have only eaten one meal today, I feel extremely bloated and I didn't eat anything until 6pm because my stomach felt so full
A: If recurring, then I would recommend evaluation by your physician for inflammation and narrowing in the intestinal tract (rectum, anal canal, colon), as well as constipation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have been diagnosed with Drug Induced Lupus. I was on Humira for 5 years, suffered severe arthrpathy in every joint and tendon for 3 years. I am concerned that because the DIL was diagnosed so late it might develop into full blown Lupus. I stopped Humira 5 weeks ago and now on 10mgs steroids now. What are the risks of developing full blow Lupus?
A: The incidence of anti-TNF (medications such as adalimumab (Humira), infliximab (Remicade), certolizumab (Cimzia), and golimumab (Simponi) induced lupus is believed to be approximately 1%. Most cases of anti-TNF induced lupus are self-limited, 94% in one study, after withdrawal of the Anti-TNF. Treatment with corticosteroids and other immunosuppressants may be needed to help resolve symptoms. It is also hypothesized that patients that do not have self-limited disease may have had underlying lupus even prior to the anti-TNF. Reference: Ramos-Casal M et al. Autoimmune diseases induced by TNF-targedtd therapies. Analysisof 233 cases. Medicine 2007; 86:242-51.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have had an ileostomy for Crohn’s disease for 30 years. At the time of the surgery, my rectal stump was left. I have had several other surgeries since for endometriosis and have problems with adhesions. For the past 5 years, I have been well but surgeons want to remove my rectum because of the cancer risk. I have read conflicting statistics as to the cancer risk of rectal Crohn’s disease after 30 years. What is the risk of rectal cancer?
A: Any of the intestine affected by Crohn’s disease is at risk for developing Crohn’s disease, and out-of-circuit diseased rectum develops cancer in approximately 10% of cases after 15 years of follow-up. And, the longer the rectum remains in place, the greater is the risk for cancer. Accordingly, it is recommended that the unused rectum is inspected and biopsied every year to detect any precancerous or cancerous changes. If these changes are noted, the rectum must be removed. If the rectum can no longer be endoscopically evaluated because of a narrowing, or stricture, its removal is usually advised if adequate surveillance has not been performed for more than 5 years.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: Since my ulcerative colitis was diagnosed, I have been given an ileostomy and had it removed three times. I was told in 2007 that my current ileostomy would be permanent. I recently went to a new surgeon who told me it was possible until he saw my records and said I have too much scar tissue. How long does scar tissue persist in the abdomen after these surgeries?
A: Intra-abdominal adhesions are commonly seen in anyone who has undergone prior abdominal surgery. These adhesions begin to develop within 7-10 days of surgery and continue to increase for a period of time. The body then starts to dissolve these adhesions until they no longer disappear, and this usually occurs 6-12 months after surgery. Any adhesions that remain after that time interval are likely permanent.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: I have problems with scar tissue following repeated resections of my intestine. I have lost half of my colon and quite a bit of ileum. This will be my fourth surgery. Will a low residue diet keep me from requiring an operation?
A: Intra-abdominal adhesions cause difficulties in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. It is important to distinguish between symptoms caused by adhesions and Crohn’s disease because the treatment is markedly different. An operation is currently the only way to disrupt symptomatic adhesions, but carries the risk of additional adhesions and is avoided when possible. A partial obstruction can sometimes be overcome with a low-residue diet because the foods in this diet are more easily broken down into smaller particles and contain less than 10 to 15 grams of fiber each day. Foods included in a low-residue diet are cooked vegetables, fruits, meats, and white breads. Raw vegetables, beans, legumes, nuts, seeds, and whole grains are avoided. With the right food choices, a low-residue diet contains an adequate amount of nutrition, but some supplements (calcium, folic acid, vitamin C) are recommended if the diet is followed for an extended period of time.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2014
Q: I live in Kenya and have been on mesacol for the last four years. What's the difference between asacol and mesacol?
A: Mesacol and Asacol have the same mechanism of action and the active ingredient of both is mesalamine.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2014
Q: I had a resection of the terminal ileum for Crohn’s disease in 1967 and now have a very small tight anastomosis. Would an elective resection be beneficial at this time? I am 76 and fearful of blockage?
A: These blockages can be sometimes managed with dilatation using a colonoscope, especially if they are less than 2 inches in length and not associated with any abscess or fistula. If this approach is unsuccessful or inappropriate and the stricture is causing symptoms, an operation can be performed to remove the segment of narrowed intestine. Strictures caused by scarring without associated inflammation are usually unresponsive to medications.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I was diagnosed crohn's (jejunum) following diagnostic laparoscopy that ended with removal of 11" of small intestine. I was to start on Remicade three months post surgery. I am still on a liquid diet and having pain and bloating. Drs. are backing off because they can't "see" the area to assess/monitor. Pill camera patency pill failed again. During surgery, the surgeon saw more extensive damage, but could not remove it all. What other measures can they use to confirm the pathology report?
A: The segment that was removed should provide ample material to confirm a diagnosis of Crohn’s disease. Imaging studies such as CT or MR enterography can be used to visualize the remaining small intestine as can some forms of advanced endoscopy. Your symptoms may be caused by extensive inflammation in some of the remaining small bowel. If this disease cannot be managed with medical therapy, surgical treatment can be employed whereby the involved segments can be widened without removal of any intestine using a procedure called a strictureplasty. Operations in these more complicated scenarios are sometimes best performed by a surgeon experienced with the surgical treatment of Crohn’s disease.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
July 2014
Q: My 19 year old son just had bowel resection surgery and 3 stricture platies. He is recuperating. However, he still has lots of burping which was a major sign prior to surgery. Is the continued burping a sign that something else is wrong and that the surgery did not correct the problem?
A: Strictureplasties involve identifying areas of narrowed bowel due to Crohns Disease and making the wide open again. There are several different types of strictureplasties but they all relieve the obstructive symptoms caused by narrowing of the intestine. If your son is still burping, having abdominal distention, cramping or vomiting, these may be signs that strictures remain and weren't identified at the time of surgery. A small bowel follow through is an X-ray test where contrast is swallowed and the narrowing can be identified. The symptoms may also be due to scar tissue from the surgery casing a kink, twist, or narrowing in the intestine, known as a partial bowel obstruction. A CT scan or small bowel follow through would be the test of choice to diagnose this. Many times the symptoms will resolve over time, but if the symptoms persist, more treatment including more surgery, may be necessary.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2014
Q: My son was diagnosed with Ulcerative colitis about 2 and half years ago .He is been taking 3 times a day Asacol 4 X 400mg = 1600Mg. + Canasa once a day before bed time. In the past 6 months he got into a cycle of three weeks feels great and then a week to 10 days later he feels bad. Is this cycle normal? Can you provide any information on this issue?
A: This is commonly seen in patients who are taking biologics and notice before their next infusion or injection that “it wears off” and they feel symptoms. This is less common with daily medications such as oral and rectal mesalamine. However, I have several patients who tell me there is a pattern to their symptoms. Usually when this happens, we review the week or days that they feel poorly to make sure there is no change, for example, they are not eating something differently, under more stress those weeks, taking their medications regularly, not taking other medications during these weeks (such as ibuprofen), or some other pattern in their lives to explain this. Often there is no change and we know that IBD may be cyclical in nature. During these weeks, it may be useful to determine if there is active inflammation, by blood or stool tests.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I recently had a flare. Prior to the recent flare I have been in remission for 10 years and I was taking mesalamine. The doctor wants to put me on Mercaptopurine and certolizumab pegol combination. The side effects are scary. What are the risk and benefits of this combination of medication?
A: There are risks to being on these medications. The risks need to be weighed against the potential benefits of better control of the disease (presumably Crohn’s). This risk/benefit balance should be discussed with your doctor who knows the details of your condition. Mercaptopurine has risks of side effects such as a flu-like reaction or inflammation of the pancreas (pancreatitis). There are also long term-increased risks of certain infections, skin cancer and lymphoma. The risk of these adverse events is still low, but increased over average risk. The certolizumab pegol also increases the risk of certain infections. There are other more unusual side effects to these treatments but these are the most prominent. The risks of these medications sound frightening, but most patients do not have side effects and if the treatment works well – generally the risks of the treatment are preferable to the consequences of uncontrolled disease. If the treatment does not work for the disease, the treatment can always be stopped and the risks generally are eliminated. Keep in mind that mesalamine, although generally a very safe medication without systemic effects on the immune system, is a very weak treatment for Crohn’s disease and it is very common that more effective treatments, such as mercaptopurine and certolizumab pegol are required. These are often very effective and the risks are acceptable if the treatment if effective.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: What are some effective treatments for acne that don't interfere with infliximab treatments?
A: Most acne treatment should not interfere with infliximab, particularly topical treatments applied to the skin. However, some treatments – such as antibiotics, might possibly cause diarrhea and aggravate the inflammatory bowel disease (IBD). You should let you GI doctor know if you are starting an antibiotic. There is one treatment used sometimes for acne called Accutane. It has been reported that this treatment maybe be associated with the onset or worsening of inflammatory bowel disease – although this conclusion has been debated and is not totally accepted. Discuss Accutane with your GI doctor if it is being considered to treat the acne. Of course, decisions regarding any acne treatment will be effected by the state of your acne and your IBD. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I am a 62 year old female. A colonoscopy in Dec 2013 showed Crohn's Disease. It is limited to the colon as confirmed by a small bowel series. I have no symptoms. However, the GI doctor put me on mesalamine and a six day series of Prednisone. Is there a need for medication despite having no symptoms?
A: Research has shown that the presence of active Crohn’s disease detected by colonoscopy, x-rays or blood tests, even if there are no symptoms at the time the testing is done, predicts a higher risk that serious symptoms will develop. This is why many Crohn’s doctors will recommend potent treatments to suppress the active inflammation – thereby decreasing the risk that symptoms will develop. Whether to treat asymptomatic Crohn’s will depend on the severity of the inflammation, the length of time the inflammation has been present, the location of the disease etc. Treatment of Crohn’s is also more effective early on – soon after the diagnosis is made, compared to treatment started months or years later. Other medications used in this situation also include azathioprine, methotrexate and anti-TNF therapy (Remicade/Humira/Cimzia). Be sure and discuss options with your doctor. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I’ve had Crohns Disease for forty year. I’ve had two successful surgeries and been in remission except for fatigue and chronic constipation. What are some options to manage chronic constipation?
A: There are many ways to manage chronic constipation. Generally, the first goal is to eliminate factors that make constipation worse, such as certain medications or hormonal conditions. Lifestyle management comes next with increased dietary fiber, plenty of liquids and aerobic exercise. Laxatives are often needed. Most gastroenterologists discourage the use of stimulant laxatives such as senna, favoring products such as Miralax. Finally, there are prescription medications that may be necessary. Often, like with many conditions, trial and error is necessary to find the right strategy. Very helpful information is available from: The National Institutes of Health http://digestive.niddk.nih.gov/ddiseases/pubs/constipation/ The Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/constipation/basics/definition/con-20032773 UptoDate http://www.uptodate.com/contents/constipation-in-adults-beyond-the-basics
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: I was in remission for 12 years great yes! But for the last 14 I have been unable to achieve this. I only have 23% of my small intestine left. What options are available for intestinal transplants? I have blood transfusions every 3 month. I am on TPN and have been for two years for malabsorption. I am in constant pain and in reality I am miserable. I need something. Any feedback welcomed.
A: I’m sorry to hear about your severe condition. Small intestine transplants are done at a handful of centers in the country; evaluation and patient selection are rigorous. If you have active inflammation and have tried all the approved/traditional Crohn’s medications, you may want to talk to your doctor about whether you’d be a candidate for any clinical trials (experimental medications). Further, Gattex (Teduglutide) is a specific treatment for short gut syndrome and you should talk to your doctor about whether you could be a candidate for this medication. Given the seriousness of your condition, a second opinion at a well-known IBD center would be prudent.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: Is it normal to have blood with diarrhea with colitis. I was diagnosed 2 weeks ago. I am taking Lialda and sometimes symptoms are better and sometimes not but I still have blood with the diarrhea and sometimes without. I am trying to find out if this is normal.
A: Finding blood in the stool is not uncommon in ulcerative colitis. While blood is often the result of ongoing inflammation in the colon, it is important to consider alternative causes including hemorrhoid bleeding and occasionally infection. It will take time for medical therapy to become effective, but if bleeding persists the cause should be evaluated. Further, if there is continued bleeding due to active ulcerative colitis, it may signify that the current treatment is insufficient and a different regimen is needed.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I had a resection two years ago due to blockage from Crohn's disease. I have been on no medicine for over 5 years. I had a colonoscopy last year and the inflammation is back. Is that ok for Crohn’s disease patients not to be on medicine?
A: Most patients with Crohn’s disease will require some long-term medical treatment. In studies were people stopped medicines when they were feeling well and in remission, a substantial portion developed a relapse within two years. However, there is a subgroup of patients who, particularly after a limited surgical resection primarily related to strictures (which is what it sounds like you had) who do well for a number of years without recurrence of disease though in most cases, it comes back eventually. In such patients, it is reasonable to monitor for endoscopic evidence of active disease periodically (every 1 year or so) and then start treatment early once endoscopic lesions have developed but before clinical symptoms. We know that in most patients, endoscopic disease precedes clinical disease, and that treating early on is associated with better outcomes.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2013
Q: Please discuss self-dilation for rectal stenosis. What are the risk and benefits?
A: Rectal stenosis is a narrowing of the anal canal, and patients who have Crohn’s of the anus and part of the rectum closest to the anus are at risk for developing this condition. Similarly, patients who have had a J-pouch may sometimes develop a post-operative anal stenosis. It is important to have the stenosis (whether from Crohn’s or from the J-pouch) evaluated by a surgeon to make sure that the narrowing is not being caused by cancer. However, once the cause of the stenosis has been confirmed as a benign stricture, dilation is a very effective treatment. Often times, the first or second dilation is carefully performed under anesthesia so as not to damage the anal sphincter. If the stenosis recurs after dilations, self-dilation at home is sometimes very useful in alleviating symptoms of obstruction and constipation. Patients can be instructed how to safely insert the sequential dilators on a daily basis much like patients with recurrent esophageal strictures have been taught to self-dilate. The biggest risk is damage to the anal sphincter, but this can be avoided if the diameter of the dilators being used are slowly increased over time, and that there is not too much of a stretching initially.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: I am not able to afford my medication as I have no insurance - please advise me of programs that could help me or manufacturers of the medication that I could get for free. I need Flexeral, Delzicol 400 mg and Prednisone 5 mg - please help
A: There are a number of patient assistance programs that you may contact for help with paying for medication including: www.needymeds.org and www.rxassist.org. The manufacturer of Delzicol has not yet established a patient assistance program for this medication. Beginning Oct 1, 2013 you can enroll in one of the Health Insurance Marketplaces for low cost insurance. Check out www.healthcare.gov.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am 41 year old living with Crohn's since age 9. I have permanent colostomy with a resection of the small bowel, no terminal ileum. I also have chronic peristomal pyoderma gangrenosum. I may have lost remission due to a Norvo virus infection. I’m on 6-MP, steroid dependent and have hypersensitivity to Remicade and Humira. What other options are there for me to discuss with GI and I am open to trials? I know there are some having immune transplants and a new IV infusion from Japan. Any ideas?
A: There are options, FDA approved options would include certolizumab (Cimzia) and natalizumab (Tysabri). Ask your doctor if the 6MP treatment is optimized. Consideration might be given to using other immune suppressing treatments approved for other indications but not Crohn’s. Research treatments are another good option. The CCFA website has helpful information regarding participation in research trials: http://www.ccfa.org/resources/intro-to-clinical-trials.html You can also search for available treatment trials on the CCFA website: http://www.ccfa.org/research/participate-in-research/find-studies-and-clinical-trials/ It is most important that you discuss your situation with your doctor. If your doctor does not have any recommendation beyond your current treatment, consider pursuing an opinion from a gastroenterologist with a special interest in Crohn’s disease.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I have chronic, everyday perineal pain secondary to an unhealed perineal wound from surgery. After surgery my body reacted and pyoderma gangrenosum started to form in that area. I take ibuprofen everyday - usually six 200mg tablets a day. It seems this is the only thing that helps besides narcotics and I can't take those every day. What can ibuprofen do to my Crohn's disease down the road?
A: Ibuprofen has been shown to make Crohn’s worse, possibly causing flare ups. It can also cause stomach ulcers if used at the dose you are taking, even in people without Crohn’s. Of course, it is also not a good idea to take the narcotic pain medicines long term. You should discuss options to get the pyoderma gangrenosum under control with your surgeon and your gastroenterologist. When the pyoderma is controlled, there should be less pain and less need for the ibuprofen or narcotic pain medications.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am currently only on Remicade (6th year). It does keep symptoms at bay. However, frequently, a week or so before time for next treatment (every 8 wks) I get rashes on neck, chest, face, shins, or bend of arm. Is the Remicade wearing off too soon? Can you give me info concerning this issue? I have seen dermatologists and my MD. I get steroid shots and creams that do help but I would like to know the cause and possible prevention.
A: This is a peculiar pattern, most immune reactions to Remicade occur immediately or 1 – 2 weeks after infusions. Symptoms that occur near the end of the 7 weeks suggest that the Remicade effect is wearing off. It sounds like your Crohn’s symptoms are controlled for the whole 8 weeks, however. Skin lesions are best diagnosed by a dermatologist with a skin exam. Based on the timing, it is tempting to speculate that the skin rashes are a result of Crohn’s activity – but this would be best judged by your gastroenterologist and dermatologist. Ask your gastroenterologist if any testing needs to be done to assess the activity of the Crohn’s. Sometimes it is helpful to measure the Remicade level in the blood and also determine if your body is making antibodies against the Remicade – if it is suspected that the skin rash is some kind or Remicade reaction. This is an expensive blood test however. The CCFA website has a description of skin lesions seen with Crohn’s. It does not sound like you have one of these, but ask your doctors: http://www.ccfa.org/assets/pdfs/skin.pdf
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I have had Crohn's in my terminal ileum since 2007, and maintained on Pentasa. I've recently become anemic. Colonoscopy and pill cam looked normal, but my SBFT indicated that my TI "appears relatively smooth and featureless with loss of its normal mucosal fold pattern consistent with a history of chronic terminal ileitis." My questions are: 1. Is my mucosal lining permanently damaged? Can it regenerate? 2. Would these results be enough to explain anemia?
A: 1. There may be some permanent scarring in the section of small intestine affected by the Crohn’s. There is potential for regeneration, but some scarring may be permanent. 2. It sounds like there is no obvious explanation for the anemia on the tests described. However, there are many cause of anemia besides loss of blood from active Crohn’s. Ask your doctor about this.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
June 2013
Q: I have recently started to lose a lot of hair. I have severe Crohn’s and am on Imuran and Remicade. The dermatologist says that these medications are associated with hair loss. I don't want to lose my hair. Have people had experiences with hair loss, and, if so, what have they done? The dermatologist said that at some point the hair loss will "level out" .
A: In the setting of Crohn’s there are several potential triggers for hair loss. Malnutrition, zinc and iron deficiency, excess vitamin A, severe illness, and medications are potential reasons. Inflixmab (Remicade) and azathioprine (Imuran) can rarely cause hair loss. Blood work through your gastroenterologist or dermatologist may help identify if there is a nutritional deficiency. If the hair loss can be clearly attributed to the medications, then it will need to be determined if the hair loss is from an immune related reason, such as alopecia areata. Patchy hair loss is seen with alopecia areata, whereas diffuse hair loss may be seen with nutritional deficiencies and malnutrition. Alopecia areata can sometimes be treated with medications that will allow continuation of Crohn’s therapies .I would recommend following up with your dermatologist to discuss the issue.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: What Treatment options do I have for Excessive BM I have 25 to 65 a day and have short bowel syndrome due to numerous surgeries due to infected areas from Crohn's? I have done so many things and no help. I also have severe hemorrhoids and they say they cannot do surgery on them due to since I use the restroom so much that the risk of infection is much higher. So I am at a loss. Any help please.
A: Treatment will need to include treating Crohn’s disease and treating short gut syndrome. If you have active Crohn’s disease, then medical therapy should be initiated or adjusted if possible. As far as management of short gut syndrome, this will require help from your gastroenterologist and dietician. Some medical centers may have providers that specialize in short gut syndrome. Treatment of short gut may entail treatment with anti-diarrheals, octreotide, gastric acid suppressants, bile acid resins, dietary modification-decreased fat intake, treatment for small bowel bacterial overgrowth, and supplemental nutrition with total parenteral nutrition (nutrition through an intravenous catheter). Teduglutide, a glucagon like peptide 2 analogue, may help increase absorption and decrease fluid and nutrient losses in the small intestine. A short gut syndrome brochure is also available through the CCFA website.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have been on Remicade for almost a year. I was going to the hospital every 8 weeks for infusions, but now I go every 6 because of recurring symptoms. Is this common? How common? Have you ever heard of anyone going more frequently AND increasing the dosage? From time to time I will get a really red rash all over my body and my face and hands get puffy and it burns really bad. Is this a common side effect of the Remicade?
A: Loss of response to infliximab (Remicade) is common and occurs in up to 50% of patients. This may be due to increased clearance of infliximab over time. So by the 8th week you may no longer have drug in your blood stream. There is more than one approach to handle recurring symptoms. Your gastroenterologist may want to obtain an infliximab level immediately before you are due for an infusion to help determine if a change in infliximab dosing and frequency is needed. Your provider may decide to empirically increase the dose if you are not on the maximum dose or/and increase the frequency of the infusion based on the timing of your recurring symptoms. Rash may occur with infliximab and I would recommend seeing your gastroenterologist and dermatologist to determine the type of rash (such as from a lupus like syndrome, psoriasis, or photosensitivity) and treatment needed
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: What are the benefits of using brand Delzicol vs a generic product?
A: There are two groups of 5-aminosalicylates, mesalamine and non-mesalamine 5-aminosalicyalte. Mesalamines are 5-aminosalicylates that are released at specific pH. The non-mesalamine 5-aminosalicylates are released by bacterial breakdown. Delzicol is a mesalamine. There is no generic mesalamine available in the United States. Other oral mesalamines include Apriso, Asacol HD, Lialda, Pentasa, and Delzicol. The mesalamines differ in how they release inside the gastrointestinal tract. Your gastroenterologist can help you determine which product is best for you.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I was diagnosed with UC almost 30 years ago. Last year, my gastroenterologist removed most of a "precancerous polyp"during a routine colonoscopy. Since then, the polyp has grown back in the same place during the 3x I was rechecked *, while there is no additional dysplasia, the dr. is recommending that I have a prophylactic removal of my colon and has referred me to a general surgeon. Where can I find more information about this type of surgery? Is there a specific type of specialist to ask?
A: If the polyp is in the field of active colitis and cannot be removed then the surgery is a proctocolectomy (colon and rectum removed). The surgeon would tell you if you are a candidate for a pouch (small intestine used to create a pseudo-rectum) versus an ileostomy. Colorectal surgeons specialize in surgery pertaining to the lower gastrointestinal tract. More information about proctocolectomy can be found at the Crohn’s Colitis Foundation Association website (Surgery for Crohn’s and Ulcerative colitis brochure) and the American Society of Colon and Rectal Surgery.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2013
Q: I have a ileostomy bag that was supposed to be reversed after six months, but never was (had surgery in 1998). The surgeons says that I can’t get the surgery to reverse the bag cause it’s been too long of time. Is that true?
A: The issue of whether an ileostomy can be reversed is based on several features that are unique to each individual patient. These issues include the initial reason for the ileostomy and the condition of the bowel that has been unused. If the ileostomy was created because the unused bowel was diseased, the ileostomy can only be reversed if the previously diseased bowel is removed and the remaining unused bowel is healthy and functional. Alternatively, if the ileostomy was created to protect a surgical site created in previously non-diseased bowel, the ileostomy can be reversed if the remaining unused bowel is healthy and functional. In either situation, recovery from reversal of the ileostomy may be more difficult and prolonged if the ileostomy has been in place for a long period of time.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I have been on adalimumab for 2 years with great success. During this time I have gained about 30 lbs, been diagnosed with high blood pressure, and high triglycerides. Are these side effects of the adalimumab?
A: Adalimumab has been extensively used for a variety of conditions and its side effects are fairly well described. Comparing patients receiving adalimumab to those not getting adalimumab, high blood pressure occurred in 5% of people receiving the medication and 3% of the others. High lipids were seen in 7% of patients treated with adalimumab and 5% of those not using the medication. Excessive weight gain is not typically seen as a direct result of the drug.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I am 64 years old and have had Crohn’s/Colitis for 40 years. I have had a flare and am now taking 6MP with 5 mg prednisone. I feel that I am stable. Are there long term effect of continued use of either the 6MP or the 5 MG of prednisone?
A: Azathioprine and 6-mercaptopurine (6-MP) are immunomodulators that are chemically similar and generally used to maintain remission in Crohn's disease as well as ulcerative colitis. Both medications have a slow onset of action (3-6 months for full effect). Reported side effects associated with their usage include diarrhea, headache, nausea, and vomiting. Exchanging the drugs can occasionally reduce some of these reactions. Fever, joint pain, liver inflammation, mouth sores, and skin rash are unlikely to be affected by switching the medications. Less common side effects include inflammation of the pancreas, also known as pancreatitis, and bone marrow suppression that may increase the risk of infection or serious bleeding. Because of these effects, blood tests should be frequently performed to measure the impact of these drugs on the bone marrow, kidneys, and liver. Some reports have described an increased risk of lymphoma, which is a type of cancer affecting the lymph glands. However, other research has shown that for most people the extra risk is small and outweighed by the potential benefits gained from treatment. Corticosteroids similar to prednisone are naturally present in the body, but the higher than normal dosages commonly needed to control inflammation can produce undesired effects. These side effects usually disappear when the medication is reduced to normal dosage levels (Prednisone 5 mg daily) or discontinued. However, the impact of long-term steroid usage is sometimes irreversible and these changes include cataracts, diabetes, easy bruising, and glaucoma. Furthermore, the body’s natural ability to produce hydrocortisone might fail to recover when the medication is stopped after many months or years of steroid treatment.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn’s just a few months ago. I took prednisone first then mesalamine, but am still experiencing symptoms. The doctor now wants to move me to biologics, but I want to move more slowly and first try increasing the dosage of the mesalamine. If that doesn't work, what would the next step be?
A: Patients with Crohn’s disease can be managed with multiple classes of medications including antibiotics, aminosalicylates (such as mesalamine), corticosteroids (such as prednisone), immunomodulators, and biologic agents. With the exception of corticosteroids, most of these medications can be prescribed on a long-term basis. Some clinicians prefer to start patients on the most mild of medications and escalate the potency of treatment only if the disease fails to respond to therapy. Others begin with the strongest drugs and then transition to lesser medications when the disease has been adequately controlled. If your disease was initially managed by a corticosteroid, but you relapsed while on an aminosalicylate, you would be a candidate for corticosteroids or biologic agents. Immunomodulators would be likely used in combination with the corticosteroids so you could be eventually weaned off the steroids and continued on the immunomodulators in order to maintain the steroid-induced remission. Disease remission achieved with biologic agents can be maintained with long-term biologic agent usage or you can be transitioned to less potent medications for long-term therapy.
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Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
September 2012
Q: My 20 year old son was diagnosed with Crohn’s about 2 months ago. He was prescribed budesonide which he started 2 weeks ago. He has had cold chills since he has been taking the budesonide and had one episode where his hand and inner calves started tingling. He also said that his lips felt funny. It only lasted about five minutes. Is this something we should worry about or are these side effects of budesonide?
A: These do not sound like symptoms that are definitely from budesonide, but everyone has different reactions to medication. If these are side effects from the budesonide, the side effects should go away when the medication is stopped. Budesonide is a steroid, but unlike prednisone (another stronger steroid) it is rapidly eliminated from the body so its effects on the body are very low (although there is some effect). Even though the side effects of budesonide on the body are much lower that with prednisone, it is a steroid – so it is often not used long term. Your son should discuss the long term plan with his doctor. A discussion of steroids, and steroid side effects, can be found in the medication section at CCFA.org.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I have been wearing a pouch for 16 years. I have had pain in my lower abdomen for about 6 months. I had a colonoscopy last week and the surgeon found that much of my colon and rectum have been sealed or obstructed over the years, which is what is causing my pain. Will I have to get my active colon and rectum removed or are there other options?
A: This is the sort of situation which has issues specific to the individual patient so there is really not any general advice that can be given. Discuss your symptoms and questions with your surgeon.
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Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2012
Q: What are my treatment options (types of medicines) for IBD?
A: The specific medical treatment options for a patient depend on the type and severity of inflammatory bowel disease. For mild/moderate disease severity, 5-aminosalicylates (5-ASA) are local anti-inflammatory medications which can be given orally or by rectum. When disease is moderate to severe immunosuppressants are used. Immunosuppressants used to treat ulcerative colitis or Crohn’s disease include corticosteroids (such as prednisone), 6-mercaptopurine or azathioprine (pro-drug of 6-mercaptopurine), methotrexate, and biologics (infliximab, adalimumab, certolizumab, natalizumab). Corticosteroids are used for flare-ups of IBD and as a bridge until non-steroid immunosuppressants work. Which medical therapy is used also depends on whether one has Crohn’s disease or ulcerative colitis. The medical therapy that is right for you would need to be discussed with your doctor. Additional information about these medical therapies is available on the CCFA website.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there any information on the effect of over-the-counter fitness supplements on ulcerative colitis? Is there a resource I can go to for more information on these supplements?
A: The real issue is what are the ingredients of the fitness supplement? If it includes lactose or non-digestible sugars such as sorbitol or mannitol, it may make diarrhea and abdominal discomfort symptoms worse. Too much of certain vitamins and minerals may lead to toxicity, such as vitamin A and iron but this may not directly affect ulcerative colitis. If you need to obtain more specific information about a supplement than what the label provides, then you will need to contact the manufacturer of that specific product. Contact information for the manufacturer may be found directly on the label. The FDA does not collect information about all supplements since FDA approval is not needed for the supplements to be sold. By law, dietary supplements need to be safe and data is collected by the FDA on supplements with adverse events reported.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I have a simple perianal fistula that is responding well to adalimumab. However, I believe it has been causing constant headaches and sinusitis for three months. I have rhinitis, so it could have pushed things to a tipping point. I skipped a shot and the issued improved somewhat, but after about 4 weeks the fistula fired up. I re-commenced and within a few days the fistula improved. Are there less sinusitis problems with other biologics?
A: All the anti-TNF therapies (adalimumab, infliximab, certolizumab) used to treat inflammatory bowel disease can increase risk for sinusitis. You may need to see your primary care or an Ear/Nose/Throat specialist to discuss methods of treating and preventing sinusitis. Another option would be to treat you with a different class of immunosuppressants, such as immunomodulators if it is feasible in your case.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I am having infliximab injections. The 5th one is next month. I have lost almost all of my hair and my scalp and arms are full of sores. Is this a side effect of the medicine? Will the sores go away and will the hair grow back?
A: Infliximab may induce a rash (such as folliculitis and psoriasis) and there are case reports of infliximab inducing hair loss by a psoriasis like syndrome. Some patients with psoriatic like alopecia (hair loss) and rash have responded to topical medications without stopping infliximab. You should be evaluated by a dermatologist to determine the reason for the rash and hair loss in conjunction with your gastroenterologist.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I am currently taking certolizumab shots and was previously taking adalimumab. Both seem to have a side effect of an uncomfortable and dry mouth, not tasting, and poor appetite. Is this a common side effect of these medications?
A: This is not a common direct side effect of anti-TNF therapies (certolizumab, adalimumab, and infliximab). Although, you may need to be evaluated for infections that anti-TNF therapies may predispose you to, such as thrush (yeast infection of the mouth).
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I was weaned off of a cycle of prednisone about two weeks ago and have had no flares for about a month or so. This past weekend I began flaring and am now in a full on flare. Is there something more I can take or do other than my 4 prescribed mesalamine? Or recommended meals/drinks that will ease the pain? I just feel that there has to be something else that will help me other than prednisone.
A: There are several non-steroid medications aside from mesalamine. Which medications to consider depend on whether you have Crohn’s or ulcerative colitis. The non-steroid medications take time to work and will usually require bridging you to these therapies with steroids. During times of flare ups, low fiber and lactose free diets are recommended to reduce symptoms. Also recommend during flares: avoidance of aspirin and ibuprofen based products and, if you have Crohn’s disease, smoking cessation.
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Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2012
Q: In researching the benefits of aloe supplements, I have found contradicting information. Can you explain what the potential benefits and/or risks are?
A: There is no good data to date to show that aloe benefits colitis. Moreover, there are many forms of aloe and some can even be harmful to the colon. Furthermore, it is difficult to know which of these forms you are getting when you buy it. Studies are ongoing in animals, but at this point it is not a recommended treatment for colitis.
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Experts 2010-2011, MD, etc.
n/a
March 2012
Q: My daughter has Crohn’s disease and recently began taking colesevelam and immediately started having blood in stool. Is this a side effect of the medicine?
A: Colesevelam is a medicine used to reduce cholesterol, but can also be used sometimes to treat diarrhea. Blood in the stool is not a commonly reported side effect of this medication. First thing, she should see her gastroenterologist to discuss the symptoms and make sure this is not related to active Crohn’s disease.
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Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I recently visited a new doctor and he told me that smoking will be beneficial. Are there any studies showing that smoking will be beneficial for patients with Ulcerative colitis?
A: Beneficial is probably too strong a word, and no one has formally studied the direct effect of smoking on the course of ulcerative colitis, though a questionnaire-based study in the Netherlands suggested the smokers who had ulcerative colitis and continued had fewer hospitalizations than those who quit. Nevertheless, the net effect of tobacco smoke and its association with heart disease, stroke, chronic lung disease and numerous cancers is too great to ignore, and smokers should quit and be treated aggressively for their ulcerative colitis.
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Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was diagnosed 5.5 months ago. I started off with prednisone and two months ago began azathioprine and was tapered off prednisone. I'm having pain in different parts of my abdomen and it varies from mild to medium. Is this due to no more steroids? Will it settle down or do I need some other medication?
A: Not everyone responds to azathioprine and there is a chance that what you’re feeling is Crohn’s, though there is a possibility that it is a function of prednisone. It is best to check this out with your gastroenterologist.
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Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was put on prednisone a couple of days ago for my Crohn’s disease; my face is very flush--is that a normal side effect?
A: There are a number of side effects to prednisone—and facial flushing is among them. This is likely a side effect you can push through, but it’s worth discussing it with your doctor. Many IBD experts do their best to minimize prednisone exposure, favoring medications such as thiopurines, methotrexate, and anti-TNF medicines such as infliximab, adalimumab, and certolizumabpegol.
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Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was diagnosed with Crohn’s in 1998 and was recently diagnosed with perianal fistula confirmed via MRI. I did have a small bowel follow through, which showed no other fistulas and had a colonoscopy that showed no active Crohn’s. I am offered now to start a biologic. Does this seem like the best option or should I investigate others?
A: For persistent fistulas that are draining, the biologics are excellent medicines, but others have been demonstrated to close fistulas also, albeit in less well designed studies. These primarily include thiopurines (6-MP or azathioprine) and cyclosporine; an antibiotic, metronidazole, can dry out fistulas, but they don’t heal very well.
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Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have left-sided Ulcerative Colitis. How long does it take to go into remission with biologics? I am on my third infliximab infusion and still have bleeding and pain. Should I ask my doctor to take other tests to determine the cause of this ongoing symptoms?
A: Everyone responds to therapy a little differently. We usually allow 8-12 weeks of infliximab therapy to determine if there has been a response or not. Doing a flexible sigmoidoscopy or colonoscopy can tell if the infliximab is making a difference or not.
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December 2011
Q: I'm recovering from j-pouch surgery, and am wondering what I can do for the incontinence I'm experiencing. It's been about 1 1/2 weeks.
A: Incontinence can occur for several weeks to months after a pouch surgery. The anal canal must get used to the new pouch. Medications like loperamide as well as fiber can help decrease the number of stools and help to thicken it up.
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December 2011
Q: Is it possible to have internal rectal scar tissue even though my biologic is "working" in preventing diarrhea from inflammation?
A: The body’s response to inflammation is to try to heal it by forming a scar. It is not uncommon in a patient with Crohn’s disease to develop scarring in the rectum or anal canal even when the rest of the colon is in remission and healed.
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November 2011
Q: My 27 yr old son-in-law was just diagnosed with Crohn’s. He has symptoms that indicate Crohn’s however they are going to do radiation on this thyroid. I have not seen any references to the thyroid in my research so this concerns me. He has lost 30lbs in about 2 months, has "the shakes" and they did an MRI and that is when Crohn’s was determined. Should a second opinion be sought?
A: The simultaneous occurrence of two new illnesses, such as Crohn’s disease and thyroid disease, is somewhat unusual, so one would want to be 100% certain of the accuracy of both diagnoses. Furthermore, the diagnosis of IBD is based not just on x-ray findings, but should also include a careful synthesis of clinical symptoms, laboratory results, endoscopic, and pathologic findings. In general, it is often useful to get a second opinion from a physician who focuses on the diagnosis and treatment of patients with IBD.
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November 2011
Q: I was diagnosed with Crohn’s in 2009. I do not have a weight loss problem, but the opposite. I eat when I am nauseous. I have recently put on more weight as my life became more stressful and I am experiencing more flare ups. Are anti-nausea medications okay for long term use in Crohn’s patients?
A: Anti-nausea medications are usually not recommended for long-term use. Chronic or recurrent nausea, with or without vomiting, is often either a sign that something is wrong or a medication side-effect. It is best to try to understand the cause of the nausea and correct the problem, rather than simply cover up the symptom with chronic use of anti-nausea medications.
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November 2011
Q: I have a 30+ year history of Crohn’s Disease currently considered in remission due to surgery and continuing meds. Now I have pulmonary complications (chronic brochiolitis) consistent with Crohn’s patients or patients on immunosuppressive drugs. What are the treatment options for this?
A: Bronchiolitis is a serious lung condition and the treatment for this should be directed by a board-certified pulmonary specialist physician. The treatments for bronchiolitis depend in part on the specific cause and severity of the inflammation, but can include corticosteroids, like prednisone and immunomodulators. If the bronchiolitis is caused by the Crohn’s disease, treatment of the Crohn’s disease may improve the condition.
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September 2011
Q: I had surgery in 2005 and they removed 10 inches where the Crohn’s was due to a blockage. Since then I have been great. Then this year my liver went bad and I am on Imune azathioprine. Now my Crohn’s has flared up again and my doctor suggests surgery or infliximab due to a new blockage. What does infliximab do and what are the side effect? Is surgery or medication a better option?
A: Infliximab is an antibody. Antibodies are proteins that bind very specific molecules. Infliximab is an antibody that binds a chemical called tumor necrosis factor alpha (TNF-a). TNF-a is a chemical that causes inflammation. When infliximab binds TNF-a, it inactivates, decreases or completely eliminates inflammation caused by Crohn’s disease in many patients. Infliximab is given as an intravenous infusion. Side effects include symptoms during or shortly after the infusion, an increased risk of infection, and, though small, increased risk of certain cancers. There are other side effects as well, and patients should have a good understanding of these prior to starting any medicine. As is the case with all treatments for Crohn’s disease, the risks of the medicine should be considered with the medicine’s benefit. Surgery may be necessary in Crohn’s disease because some medicines are not helpful in certain instances. If a bowel obstruction is caused by inflammation, it may improve with medicine. If a bowel obstruction is caused by scar tissue, surgery may be required to relieve the obstruction. Again, the patient should have a complete understanding about what the potential benefit of surgery is, and what the potential risks are. With all that said, some patients benefit significantly from surgery.
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September 2011
Q: My 17 year old son was diagnosed with UC in October 2010 and the diagnosis was changed to Crohn’s disease in April. He’s gone through many different treatments and is now on infliximab. The inflammation and symptoms have reduced, but he’s not in remission. I’m concerned that he’s gone 16 months with continued inflammation. Is it possible to safely replace infliximab with a 6MP or some kind of combination therapy?
A: First of all, there are several reasons for ongoing symptoms in the face ofwhat should be effective Crohn’s disease therapy. The cause of symptoms may be due ongoing inflammation due to Crohn’s disease, which may be suspected based on laboratory tests or endoscopy/colonoscopy. If Crohn’s inflammation is present, then medicines should be optimized. Some patients don’t take their medicines. There are many reasons a patient doesn’t take their medicines: I have found the most common reason is they forget or they have side effects and are afraid to tell their doctor. Whatever the reason, tell your doctor if you aren’t taking them and why. If you are taking your medicines, there are ways your physician can tell if the dose is incorrect or if it’s not effective. There are certain tests that may help a physician decide if infliximab dosing can be increased or why it is not working. While adding mercapturine (6MP) may be considered in some patients, there is a concern that infliximab AND 6MP may increase the risk of certain infections and cancers. If inflammation cannot be found or doesn’t appear to be causing symptoms, other reasons for ongoing IBD symptoms should be considered. One alternative explanation for ongoing symptoms is a stricture or scar in the intestine. If present, strictures may not respond to any therapy and require surgery to repair. Lastly, ongoing Crohn’s disease symptoms while on therapy may be due to non-Crohn’s disorders of the intestine, including infection—particularly Closteridiumdifficile, undiagnosed celiac Sprue, lactose intolerance, or irritable bowel syndrome. Patients, their families, and physicians should explore all potential explanations for ongoing symptoms while receiving what should be effective therapy.
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September 2011
Q: If you have developed antibodies against one biologic drug, does that mean you will develop antibodies against other biologic drugs?
A: Infliximab, adalimumab, and certolizumab pegol are medications used to inactivate a chemical called tumor necrosis factor alpha (TNF-a). These therapies are antibodies—proteins that bind to and inactivate very specific molecules. They are called biologics because they are antibodies. Antibodies to infliximab increase the risk of infusion reactions, and may decrease the effectiveness of infliximab. Sometimes additional medications (such as methotrexate) are given to patients in addition to infliximab to attempt to prevent the formation of antibodies to infliximab. Antibodies to infliximab can be measured in the blood, and if they appear to be clinically important in a given patient, therapy with another biologic (adalimumab or certolizumab pegol) can be used. This is because the antibodies to infliximab don’t react with adalumimab or certolizumab pegol. Antibodies against adalumimab and certolizumab pegol can develop, but currently, there are no blood tests commercially available yet to measure them.
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July 2011
Q: I frequently have urgent needs to have a bowel movement. It can be solid or diarrhea in form but it requires immediate access to toilets. It has caused "accidents" to happen. What help can I get?
A: Urgency, or the feeling of having to have an immediate bowel movement, is common when there is proctitis, or inflammation in the rectum. Sometimes, the sense of urgency is so great that despite every effort, accidents will happen. This is not a lack of sphincter control (the muscles that control this area); this sensation reflects stool in the rectum and the response of an inflamed rectum trying to expel its contents. The most important element in your situation is to seek medical help, as the diagnosis of proctitis can be made generally with clinical examination and sigmoidoscopy. There are a number of treatments for proctitis that can help alleviate the symptoms of urgency.
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July 2011
Q: My son has Crohn's disease and also has cerebral palsy with epilepsy. He is taking infliximab and had side effects of increased seizures and mood and behavioral changes. What is going on?
A: Infliximab is a monoclonal antibody directed against tumor necrosis factor-alpha (TNF-alpha) that has received FDA approval for use in moderate to severe or fistulizing Crohn’s disease refractory to other conventional therapies. Infliximab and other medicines that inhibit TNF have been rarely associated with the onset or exacerbation of central nervous system disorders including mental status changes or permanent disability, particularly in people with multiple sclerosis or other demyelinating disorders. Seizures following infliximab treatment are very rare and there have been a few reports of infliximab-related seizures that resolved with discontinuation of infliximab treatment. Sometimes the findings are subtle and require MRI of the brain and/or electroencephalograph (EEG) monitoring to detect changes. You should discuss your son’s neurological and behavioral changes with your physician.
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June 2011
Q: I have been taking sulfasalzine, azathioprine, and folic acid without any problems since ‘02. A month ago symptoms returned including diarrhea and bleeding-I've had small recurrences in the past which went away quickly but am worried as it been over a month. I've tried changes in diet including eating smaller meals, but haven't had any success. I read that Psyllium fiber in a glass of liquid every night before bed could be an option? Anything else I can try besides trying different meds?
A: Talk to your doctor about your specific case, as you may be able to do short term treatments, like enemas or increasing the dose of your sulfasalazine (depending on your current dose), to get back into remission and then may be able to continue on your previous medical regimen. If you have already been adjusting your diet and have continued to have symptoms for the last month, it is time to get help from your doctor. Psyllium may help to bulk to stools somewhat, but wont treat the underlying inflammation in your colon.
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June 2011
Q: I have had Crohn's Disease for three years. I have been well controlled until my pregnancy and choice to breast-feed resulted in a flare and I developed a very superficial perianal abscess at the anal verge. I and D performed by colorectal surgeon, but it refilled and I was able to drain myself. Now my surgeon wants to do a fistulotomy for the fistula: suspect a low, simple fistula. My meds are flagyl, 6-mp and entocort. Should I wait to see if meds help or go ahead with surgery?
A: An important aspect of your situation is to know whether you have inflammation in your rectum along with the fistula. If there is no rectal inflammation, a fistulotomy is not unreasonable given that you have had recurrent problems with abscess. On the other hand, if you do have active inflammation in the rectum along with the fistula, a fistulotomy is an option, but your surgeon may also want to consider placing a seton (small rubber band placed through the fistula to keep it open and prevent abscess while it heals up) instead of a fistulotomy, while giving your medicines time to help heal the fistula as well. Discuss these options further with your doctor to decide which is the best option for you.
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April 2011
Q: My 13yr old was diagnosed with CD 2.5 years ago, she is presently taking mesalamine. Much of her inflammation is located in the rectum, but every time she tries a rectal med (mesalamine enemas, suppositories, or corticosteroid foam) it just seems to aggravate her symptoms (painful cramping and more frequent bowel movements). Do you have any advice? She has trouble having a bm and yet it isn't constipation as the stool is soft. Her doc still tried stool softeners but it just caused frequent bms.
A: A number of conditions can co-exist with Crohn’s disease, including anal fissures and altered regulation of the nerve and muscle function of the rectum involved in evacuation of stool. A good anal examination and possibly anorectal manometry testing in which the nerve and muscle function can be formally evaluated can be a good supplement to a sigmoidoscopy or colonoscopy to help determine the nature of the problem.
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April 2011
Q: In 2001 I had 22" of small bowel removed and resected where the small gut meets large. Now I have a stricture at the site in the small intestine. Would strictureplasty be a viable solution or another resection?
A: A number of different options can be utilized to relieve the symptoms of a stricture of the small intestine in a patient with previous small intestinal surgery. These are a second resection, a strictureplasty, and, in the hands of a capable endoscopist, a through-the-scope balloon dilation of a stricture. The precise location and anatomy of the stricture (where relative to the surgical connection, how long the structure segment is, and whether there is an increase in the diameter of the intestine above the area of the stricture, can help you and your doctors determine the best approach.
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April 2011
Q: How successful is the long-term use of 10% hydrocortisone rectal spray foam in the treatment of rectal tenesmus for a Crohn’s or ulcerative colitis patient?
A: There are few long-term studies looking at this problem, but 10% hydrocortisone rectal spray foam is very effective in the short term treatment. Selecting a medicine or combination of medicines that keeps the inflammation of the rectum under control will likely keep the rectal symptom of tenesmus under control; usually, I tend to think of 10% hydrocortisone rectal spray foam as an adjunct to other medicines used to maintain remission, but I do have some patients who have been on it for a while.
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February 2011
Q: I am scheduled for a colectomy/ileostomy. One of the medications I am taking (for a non-Crohn’s related disease) has withdrawal effects, including vomiting. My concern is that, post-surgery, the GI transit time will be too fast for enough of the medication to be absorbed into the blood system, resulting in the aforementioned withdrawal effects. Has anyone worked with venlafaxine just after ileostomy surgery or a similar situation?
A: Not that I know of. This is a good question, and you should review with your GI doctor and the doctor prescribing your other medication the plan for the period after your surgery.
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February 2011
Q: Is it possible to have a bowel resection done where the entire transverse colon is removed and the ascending and descending colon are reattached together? I have stricturing of the transverse colon and was given the impression by a surgeon that most of the colon would have to be removed because of it.
A: Yes, if the ascending and descending colon are healthy, than these can be re-attached together.
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February 2011
Q: I have tried all of the traditional treatment programs for Crohn's up to and including infliximab. I don't have profound symptoms - just some minor bleeding, loose stool, and mucus discharge. I stopped all treatment about two years ago, since it wasn't helping with my primary symptoms, which are a constant stomach cramp and severe bloating. Do you have any advice on how to deal with those two chronic and uncomfortable symptoms? I am 65 years old. I look like I am 6 months pregnant.
A: You may want to speak with your GI doctor to make sure that your stomach or small intestine are not affected by Crohns, which could cause these symptoms. If you find that Crohns does not seem to be the cause of your symptoms, than you and your doctor may want to look at other conditions which could be causing inflammation in your stomach and small intestine, dietary factors, such as lactose, or overgrowth of bacteria in the small intestine.
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January 2011
Q: A recent CT scan showed thickening, inflammation and narrowing of small bowel at the site of connection of the Jpouch to small bowel as well as the site of ileostomy. I had an ileoanal colectomy in 2002, reconnected in 2003 and have experienced pouchitis and pain on right side (where ileostomy was) on and off. Medication to control inflammation and removal of JPouch if this treatment fails is currently being considered. Are there other options or suggestions?
A: The description of the X-ray results suggests that you may have Crohn’s disease of the ileoanal J-pouch. If this is the case, then aggressive treatment, including biologic therapy (e.g. infliximab, adalimumab, or certolizumab) would be appropriate. Another, though less likely diagnosis would be pouch ischemia. A pouchoscopy and biopsy should be able to distinguish between these two possibilities. Most patients with Crohn’s disease of the ileoanal pouch can be controlled and improved with medical therapy. However, about 20% of patients with Crohn’s disease of the ileoanal J-pouch will need to have surgical removal of the pouch and an ileostomy.
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January 2011
Q: I want to learn more about methotrexate: side effects, benefits to taking it, how often it is taken and in what manner. My doctor wants to add it to my adalimumab usage.
A: Methotrexate works by interfering with the normal body metabolism of the vitamin folic acid. For treatment of active Crohn’s disease, it is usually given subcutaneously (injection) at a dose of 25 mg once weekly. Sometimes, if the drug is working to control the disease, after twelve weeks the dose is reduced to 15 mg subcutaneously once weekly. Methotrexate is not effective for the treatment of IBD when given orally as pills since it is poorly and inconsistently absorbed by the gastrointestinal tract. However, some physicians will give low doses (around 10 mg once weekly or 2.5mg three times weekly) of oral methotrexate to patients on biologic therapy (like inflximab or adalimumab) to try to prevent allergic reactions and the formation of antibodies against the biologic drugs. Methotrexate is usually well tolerated at low doses (7.5 mg to 25mg total weekly dose). Common potential side effects include but are not limited to fatigue, nausea, abdominal pain, oral sores, headache, abnormal liver blood tests, and low blood counts. Rare but clinically significant side effects include cough or scarring of the lungs or liver.
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December 2010
Q: Is there any new information on advancement flap surgery for the treatment of fistulas?
A: Advancement flaps are for fistulas that connect the vagina to the rectum or for perianal fistulas. Surgeons at IBD specialty centers are using these flaps on a selected case by case basis and only by talking to one of them would you know if you are a candidate or not.
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December 2010
Q: I am currently taking 150mg azathioprine. I've had to reduce Asacol from 3600mg to 2400mg due to the cost. Shortly I will have to totally discontinue Asacol because I cannot afford it. Should I substitute a sulfa drug to replace it? I do not qualify for the patient assistance program the makers of Asacol offer. I have not had a flare for 12 months.
A: Asacol is used in conjunction with azathioprine for several different reasons. It is perfectly acceptable and nothing to be ashamed of to tell your doctor about these cost concerns and ask whether the Asacol or one of its equivalents is even necessary at this point.
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November 2010
Q: What is the standard length of time to notice the effectiveness of my medication? Is there a difference response time for each class of medication?
A: Different medications work at different rates. Corticosteroids typically work quickly and some improvement is typically seen within a few days. 5-aminosalicylates also work fairly rapidly, though not as quickly as steroids. Usually some improvement is seen within 1-2 weeks, though patient often continue to see benefit out to 4-6 weeks. The immunomodulators, azathioprine and 6-mercaptopurine, work very slowly and routinely take 3-4 months to be effective. Methotrexate works more quickly, however, and patients will often improve within 4 weeks. The anti-tumor necrosis factor (anti-TNF) antibodies, infliximab, adalimumab, and certolizumab, all work quickly. Most patients will improve within 2-4 weeks, with some feeling better within a few days. When anew medication is begun, it is important to keep in contact with your physician to monitor treatment progress. If no improvement in symptoms is seen within the appropriate amount of time, then consideration should be given to adjusting therapy.
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