Community Forum

Hi to everyone, newly diagnosed, fresh off the hospital bed so to speak.   Was diagnosed in May 2012 and have been on medical leave since.  Headed back to work Monday.  It has been a real struggle, going on and off meds, researching stuff online, being tired, weak, angry, frustrated ... working through it all.  I am at the place where I have accepted the disease and try to look at the positive.  Like hey, I lost a ton of weight and got to go shopping for new clothes lol.  Good days and bad days, same as with anyone's life, healthy or not.  But sooo many questions and sooo many concerns.  I feel like my family must be sick of me talking about it, so looking for anyone who is willing to chat about all the good stuff ... meds, side effects, bowel consistencies, diet, etc, etc.  Thanks to all who take a moment to read and/or post.  And here's to all of our tummies staying strong!    And no, I am not always this perky, I do have my bad days where the swearing and anger flare up ... same as the disease.  Be well!

 Reply posted for ajh.

Not me sorry, haven't even heard of it.

 

 Reply posted for spinnychick.

 Reply posted for phillyboy.

Hooray for your first infusion!  Hope it does wonders for you!

 Reply posted for spinnychick.

Thanks for the link. Had my first infusion last week. So looking forward to finally weaning off Prednisone. I agree, it's spring and time for rebirth. Dave.

 Reply posted for spinnychick.

yeah until you are in remission it will be hard! all about taking in more than you burn! hope you are making the best of it even though i know its alot of pain!

 Reply posted for delirium.

On remicade now which has helped.  Have a CT scan this Sunday to check and see why I'm still losing weight, my GI is baffled.  Hanging in fine, spring is here and all is well.  I always try to keep my chin up.

 Reply posted for spinnychick.

yeah until you are in remission it will be hard! all about taking in more than you burn! hope you are making the best of it even though i know its alot of pain!

 Reply posted for delirium.

Healthy eating and exercise is always a good thing, congrats on your success.  My experience with healthier eating and exercise is that I tend to lose weight as I am burning more calories than my body absorbs.  I'm not in remission yet though, so that may be the difference.  Keep up the great work!

 Reply posted for spinnychick.

idk how i havent seen this thread before! figured i would post on here and say hey talk out my recent progress...last January i decided to get big into fitness and start eating healthier and working out.  Last January i was only 130lbs, and now i am currently 175lbs!  I have only had one little minor, idk if it is even considered a flare up, since i started eating healthier and working out.  hopefully i can start helping out other people with crohns or UC that want to get into bc there were alot of trial and error type stuff i had to figure out.  but its so awesome when i went to the doc about a week ago just for a yearly check up and the doctor was like O.o you arent taking steroids are you?

 Reply posted for kimar.

www.crohnsforum.com  search remicade and you will find a ton of discussions from people on remi. the support is fantastic

 Reply posted for spinnychick.

Hi Spinny,
Haven't checked onto the forum in awhile. Although I definitely have UC, and Remicade worked quite well for awhile, I'm wondering about it now. I also have arthritis in the mix, and for several months it was the problem. After a couple of flares in Feb. and March, I've had the runs for about 6 weeks now, although not nearly as badly as last summer and my energy is starting to come back. The docs have upped my Remicade and more often, every 6 weeks, and I'm taking sulfasalazine, as well (an old-timey med. that treats both symptoms). Anyway, I'd be interested in the Remicade site, if that's okay. Oh yeah, the UC diet is also highly effective. I think I actually need to go shopping for new pants! My husband is trying to get me out. Stay strong - we will all get through it. Prayers do wonders.

 Reply posted for phillyboy.

Hi Dave.  Remicade may or may not be working ... not sure.  Still losing weight, was at an all time low before vacation.  Doc added immuran to the mix also but I only lasted on that approx 4 weeks due to side effects.  Going for infusion 5 of remi next week and a CT scan to see why I'm not in remission.  Remicade is a wonder drug for most.  I'm on another site that has an actual remicade forum, made lots of friends over there.  If you want the link, lemme know. Hope all is well.

 Reply posted for spinnychick.

Hi. Wanted to check in to see how you're doing as well as out of self-interest. Just got scoped (again!) and he's recommending Remicade. Wondering how you're doing with it? Love to hear from you about your experience. Dave

 Reply posted for spinnychick.

Glad to hear you're doing better, I think. Actually thought about you recently around the news report of the cruise ship without power (and working toilets!). Can always be worse.

In the midst of a nasty flare, back on Prednisone and all the related side effects, but the pain is gone and hopefully the bleeding and fatigue will disappear again ASAP as well. Felt frustrated that I'm back exactly where I was a year ago. Nature of a chronic illness though. Continue to move forward as best as possible and experiment with alternative medication adjuncts to my usual cocktail. 

 Reply posted for spinnychick.

I suffered from UC for 3 1/2 and then started researching online. My husband was my donor and it has now been almost 4 months of being back to normal, having normal bowel movements - no gas, no cramps, no urgency, no blood, etc.  I am back to eating anything I want after 6 months on the Specific Carbohydrate Diet.

If you would like to read my story and see links to other articles, email me.

Just don't give up thinking it is hopeless - there is another way. I am not on any drugs and completely symptom free.

These digestive issues are caused by a imbalance in the bacteria in your gut, most likely from antibiotic use or sometimes food poisoning.

Just google Fecal Transplant and you will find how it is being used to heal digestive issues - I had UC and it healed me.

Email me for a link to my blog - kwi_sky@yahoo.com

Teri

 Reply posted for PhillyBoy.

Doing well, a bit better I think.  GI seems to think swelling has gone down and absorption is better, however I am back to being down 10 pounds and anemic.  6 of one, half dozen of another.  How are you doing?

 Reply posted for spinnychick.

Hi, how are your doing after your third Remicade treatment?

 Reply posted for spinnychick.

I had UC for 3 1/2 years and was told over and over there was no cure. Then I did a home fecal transplant with my husband as the donor - that was 3 months ago. I have been symptom free ever sense - no mucus, not gas, no cramps, no diarrhea.  Just normal BMs like it was before the Zpack antibiotic for a sinus infection that started the whole health issue for me.

Don't let them tell you there is no cure. Look up fecal transplants - they are showing great success with restoring gut bacteria, which is what is causing all the digestive issues.

You can do it at home and it doesn't't cost a thing - read about it online and you will see that it works to restore gut bacteria fast. You have nothing to lose.



Teri

 Reply posted for jaybird.

Sometimes it can take many infusions for the meds to build up in the system and for the patient to really see a difference. Hope that this is the case with your son! Good luck and take care!!

 Reply posted for spinnychick.

I really hope the Remicade treatments work for you - you have had a tough road this summer/winter. Will be thinking of you this Thursday. I understand about the exercise; a little walking is all that I've managed!

 Reply posted for jaybird.

I have my third Jan 10.  From what I've heard some people see a change right away, some not until all three loading doses are in.  For a very few, the drug doesnt' work.  Sorry not to have more info, new at this myself.  Best wishes.

My son had his third remicade infusion friday and there is not much of a change at all!!Did anybody else run into this. I'm very concerned and worried. Help Jayzdad

 Reply posted for PhillyBoy.

Hi Dave and a belated Merry Christmas!  Hope the holidays went well for you and that you and your family had a wonderful time.

Remicade may or may not be working, I have my good days and bad, however I've only had 2 of the first three loading doses, so who knows.  Seems some people notice a difference right away, and others need up until the third loading dose.

What I really need to get cracking with is getting back on the bike and treadmill, have been super lazy since coming back from the cruise and that is my top priority for resolutions for the new year.  Seems exercise helps anyone with any illness, so I'd like to get back into the routine.

Best wishes for continued improvement with the dietary changes and acupuncture, keep me posted.

And all the best for 2013!

 Reply posted for spinnychick.

I'm doing well overall. I think training for Team Challenge was taking more out of me than I thought as I've been feeling better since. I got a consult with the Integrative Medicine Department at our local hospital and am trying a  combination of diet changes, meds, and acupuncture  (with some Chinese herbs thrown in from the acupuncturist) which seems to be keeping things stable for now. I'm a D.O., so I figured I should at least get a consult with one to see if osteopathic manipulative therapy had anything to offer (I was doubtful) but have been pleasantly surprised to how much better I feel overall after I see her. Weird combination, but I'll take it as long as I'm feeling well.

Any results from Remicade?

Happy New Year,
Let's both hope for better health in 2013,

dave

 Reply posted for PhillyBoy.

Yes, made it through the wedding and honeymoon and had a wonderful time.  Next cruise is 4 months away!!

Started remicade 2 weeks ago today.  Next infusion is this Thursday.  Unsure if anything is working or not yet.  Seems to be an increase in bm's and an increase in pain, but will wait to pass judgment and hope it works.

Congrats on your big endeavour! 

And how are you feeling?

 Reply posted for spinnychick.

Congratulations on your marriage. I'm glad you were able to enjoy your honeymoon.

I'm still on my high from Team Challenge 1/2 marathon from a week ago today, so doing quite well at the moment. I was one of the most amazing experiences of my life, from training with others with Crohn's and Colitis towards a common goal, the inspirational pasta party the night before where an 8 year old with Crohn's disease was the best speaker of a night filled with wonderful speakers, to the enthusiasm of race day itself. And I made my time. Nationally, we raised just shy of $4 million for CCFA!

If you're at all an athlete (or even if you're not for that matter), I can't recommend highly enough you checking it out someday when you're feeling up to it. I've run races in my pre-diagnosis days, but when your running for something beyond yourself.....

Have you had your first Remicade infusion at this point? From what I've heard, it begins to help within the first few infusions. 

 Reply posted for PhillyBoy.

Hi Philly boy!  Just back from the cruise, married, had a wonderful time and managed to avoid going back on prednisone although I probably should have.  Call the insurance company and pharmacy this week and should have my first appointment for the remicade hopefully next week.  How have you been???

 Reply posted for spinnychick.

Hi Deanna: Just checking in. I'm hoping you were able to go on your cruise and had as good a time as possible. Have you started Remicade? How are you feeling?

haha i say the same thing about people that are around me! it must get old hearing about it when you don't know what exactly it is like! since january i have changed my diet and become an avid gym goer and that seems to have helped me tremendously. I have actually gained 40 pounds since January haha, im not the skinny guy with crohns anymore!

 Reply posted for UCdad.

Thanks so much for all the great information, will def look into it.  Truly apreciate any insight I can get to the disease.

Best wishes for your daughter and family.

 Reply posted for spinnychick.

Hey, I'm sorry about your diagnosis. My daughter has UC and has had 4 really bad flare-ups in the past year. In your reading and research, I wonder if you came across a link to a study in Australia way back in 1993, by one Dr. Borody, who used fecal microbiota transplantation (or human probiotic infusion as he called it) to treat UC. Here's another link, from the CCFA website - http://www.ccfa.org/chapters/southwest/news/is-there-a-therapeutic-role.html - showing a study from this year. Because doctors do not generally offer fecal therapy for UC, and because my daughter is terrified of medication side-effects, we were forced to develop a home treatment protocol for fecal therapy. If you're interested, I've decribed the procedure and our experience in a memoir titled "Ulcerative Colitis from the Bottom Up." Despite the drawbacks, we've found it worth the trouble to do this therapy. She's doing much better - no flares since we started the treatments - and we continue hoping for a complete cure. Nobody deserves this diagnosis, and if you think you might have brought the disease on yourself - that's just not true. It was important for my daughter to know that she didn't do anything to get UC, so I'm telling you also. Best wishes to you.

 Reply posted for jeanasue.

thanks so much for the info, i may look into it. Best wishes to your mom and her continued health 

 Reply posted for spinnychick.

@SpinnyChick, my mother has dealt with Crohn's over 40 years.  She nearly died in the hospital in her twenties.  They removed several feet of her intestines.  She has taken every drug, seen multiple doctors, tried multiple things.   It is called Protandim.  It is remarkable.  She has more energy and feels great too.

 Reply posted for hopefulmommy12.

Hi hopefulmommy12.  I'm new to all of this as well, so not much for expertise or experience.  I was on prednisone steroids for 5 months, some antibiotics, then mezzovant, then weekly injections of methotrexate.  Still losing weight, still pooping more times a day than the normal person.  So I'm off everything and moving towards remicade.

Everything I've read and heard says to limit your diet ... mine must be a special case, I eat anything and nothing seems to bother me.  Except that one carrot that pooped out whole lol.  I think every case is very individual with regards to treatment/diet/etc.

I'm down to a size 2 and I'm 5"9, so pretty skinny.  I really don't know what a flare is because I haven't reached remission.

My best advice is to try what the docs give you, research as much as you can, and talk to people with the disease.  I appreciate your hubby trying to be supportive, but I feel they just don't get it.  My mom thinks if I just sit down and eat I will be fine lol.  It is an embarrassing and awkward disease to discuss which is why we all come here, and remember that you are safe here and not alone, we all understand and empathize. 

I always try to look at the positive though .... so I am back in a bikini at age 43, eat whatever I want without gaining weight, and the disease is manageable and not terminal, it could be so much worse, so I am grateful for that.

We're here for you, ask questions, get embarrassed with us, feel at home on here.  :O)

 Reply posted for spinnychick.

I was just diagnosed a week ago.  I have been in a major flare up for 7 weeks.  The first Dr. that I had ( got him because I was admitted through ER) didn't know what he was doing in my opinion.  First he treated me for C-DEF (which I didn't have), then he said that I had Ischemic Colitis (which I did have but they couldn't figure out why a 33 year old, relatively healthy person would get that) and then he did a ton of tests chasing down a rabbit hole.  He then did another colonoscopy (which I have had 3 in 5 weeks!) and sent of some labs to the lab in CA that tests for Crohn's or Ulcerative Colitis.  Mine came back as Crohn's.  He didn't feel the need to tell me this for 2 weeks!  He didn't even tell me until I got my records so that I could go to another Dr.  Ok, enough ranting and raving!

So I had another colonoscopy on Wednesday and the colon is completely healed (from the colitis).  So if it wasn't for the colitis, we wouldn't have found out at all about the Crohn's.  Trying to find anything positive at this point!  I had the small bowel capsule study done today where you swallow the camera and it travels all the way through the small bowel taking thousands of pictures.  I go back to the doctor on Wednesday so that we can start my treatment.  

If anyone has any advice on treatments, diet, what to have your support system do (they are all throwing all this info at me, but it all seems to be coming at the wrong times.)  My husband just wants to "fix it" and he can't so he doesn't know how to deal and I have a 5 year old who sees Mommy looking sicker and sicker everyday.  We did finally show him my PIC line, and it was a relief for me because I wasn't always on high alert so that he wouldn't accidently see it.  

 Reply posted for kimar.

Reply posted for Kimar

My daughter was diagnosed with crohns at age 9.  She is 12 now.  She was on remicaide for a little over a year and it was a God send.  She pooped once a day. No blood. Ate what she wanted. No pain.  Grew a couple inches and gained weight.  They she started loosing her hair and no one knew why.  We went to a dermatologist and she took a biopsy of her head and she had developed psoriasis which is an uncommom side effect of the remicaide!  Which is wierd because they use remicaide to treat psoriasis is some cases. I dont get that but anyway, she stopped the med and the hair symptoms went away.   Anyway, keep that in mind with your hair symptoms.  Good luck.

 Reply posted for kimar.

Thanks for all the good info, and good to know to bring a blanket, I'm always cold. 

Also agree about never having been to the doctor so much, I feel like a frequent flyer there and also at the pharmacy lol

 Reply posted for spinnychick.

I'm kind of tired all of the time, but then, we have 3 teenage boys who are active in school, I teach (went back after Labor Day with great support from the school) and don't exercise enough and have low iron and hypothyroidism - nothing serious individually and very treatable, but I'm just tired. You seem to be in good shape anyway and so should do well. 
 I started felling much better just a day or two after my first infusion in the hospital. It took a couple of weeks before my output started looking normal. You'll also feel better getting off the prednisone.
It's hard to know how much stress plays into all of this - I was just reading that the hair loss may be due to stress and not the meds - don't know. I see the GP next week for my annual that I missed this summer and maybe will get some answers. I just had my hair cut today (I usually just leave it long and throw it in a ponytail). It's now a pixie and feels so much better! I'm hoping I won't notice the hair loss so much and that in itself will make me feel better. 
Have my next infusion the day before the election and then see the GI doc the week after. I've never been to the doctor so much before in my life, except maybe during pregnancy!

Take a book and let them throw a blanket over you - it gets cold in these infusion centers!  Good luck and let us know how you do :) I'm heading out for a walk.

 Reply posted for PhillyBoy.

Phillyboy, you mentioned that you were having 2 colonoscopies in a year, as if that were more than the norm.  How often, once we attain remission, do we get them?  I've had 3 in 5 months ... sigh. 

 Reply posted for kimar.

Thanks for sharing your experience.  Any other side effects beside fatigue day of, and how long are you tired?  Is the rest of the day a write off?  As far as gaining the weight back, I hope not to gain all mine, some, but not all, losing a few pounds has been the only plus side of all this crap.  Haha, crap ... no pun intended there.  How long have you been on remicade?  What do you think hair loss is from?  Don't mean to pry, but do our bowel movements ever go back to normal (frequency and consistency)?

 Reply posted for jgasaway.

Looks like we may be starting this together.  I saw my GI yesterday and got the green light for remicade.  I now wait to hear from my assigned "case worker".  I am traveling in 2 weeks, so don't think I'll be starting until mid November, but will keep you posted.  I'm scared too.  After my appointment, my fiance was all happy and telling everyone it was great news.  I am so confused ... how is it great news that after 5 months of meds, I'm still not healed and have to shoot mouse protein into my body?  Yay, let's have a party.  Sorry for the mood, just feeling frustrated and am not mentally ready for remicade or humira.

 Reply posted for spinnychick.

I've thought abut Spinny and Philly from time to time. Although I have UC, which is different in many ways, Remicade did save me. The docs tried prednisone and asacol for about two weeks and I got a little better, then worse. The remicade has literally been a life saver. I've just had 3 infusions and do get sleepy afterward. Have recently started losing my hair, (that's not on the side-effects list), but I've probably put on most all the weight I lost this summer, so it must be working. I still look at my poop sometimes to make sure it's all good - and so far so good.  If you do go this way, good luck. Not a cheap drug, though, about $3,000 a pop including the IV line and such. I could not have done this without insurance.
Best to you:)

Sorry to hear your appointment didn't go so well. Hopefully the impediments to getting the medication resolved. It's so frustrating when we're feeling sick and we have to deal with all these related issues. I'm still trying to get the increase in my med dosage approved by insurance, although they did give me at one  month at the new dosage, which seems to have helped and my fall flare is improving. We'll see when I go for the refill in 2 weeks.

Starting Remicade is a tough decision, and the potential side effects are pretty scary. My PCP broached biologics with me, so I might be close behind you and Deanna for having to make a tough choice. Then again, NOT treating IBD isn't  an option either. The more I read on biologics, the more comfortable I get at the thought of starting one if that day comes, and that Remicade or Humira can potentially alter the natural history of Crohn's so that our outcomes are better (less hospitalizations and less surgeries). Asacol (which is what I'm taking) is only an anti-inflammatory, and while it is keeping my symptoms under better control, it's not necessarily healing the damage that's already been done which should be the goal of treatment. I'll know better next month after another colonoscopy (2 in one year, just fantastic). Biologics tend to heal more than just control.

Keep in touch about that you decide and what your experience is and I'll do the same.

Sorry to hear your appointment didn't go so well. Hopefully the impediments to getting the medication resolved. It's so frustrating when we're feeling sick and we have to deal with all these related issues. I'm still trying to get the increase in my med dosage approved by insurance, although they did give me at one  month at the new dosage, which seems to have helped and my fall flare is improving. We'll see when I go for the refill in 2 weeks.

Starting Remicade is a tough decision, and the potential side effects are pretty scary. My PCP broached biologics with me, so I might be close behind you and Deanna for having to make a tough choice. Then again, NOT treating IBD isn't  an option either. The more I read on biologics, the more comfortable I get at the thought of starting one if that day comes, and that Remicade or Humira can potentially alter the natural history of Crohn's so that our outcomes are better (less hospitalizations and less surgeries). Asacol (which is what I'm taking) is only an anti-inflammatory, and while it is keeping my symptoms under better control, it's not necessarily healing the damage that's already been done which should be the goal of treatment. I'll know better next month after another colonoscopy (2 in one year, just fantastic). Biologics tend to heal more than just control.

Keep in touch about that you decide and what your experience is and I'll do the same.

Sorry to hear your appointment didn't go so well. Hopefully the impediments to getting the medication resolved. It's so frustrating when we're feeling sick and we have to deal with all these related issues. I'm still trying to get the increase in my med dosage approved by insurance, although they did give me at one  month at the new dosage, which seems to have helped and my fall flare is improving. We'll see when I go for the refill in 2 weeks.

Starting Remicade is a tough decision, and the potential side effects are pretty scary. My PCP broached biologics with me, so I might be close behind you and Deanna for having to make a tough choice. Then again, NOT treating IBD isn't  an option either. The more I read on biologics, the more comfortable I get at the thought of starting one if that day comes, and that Remicade or Humira can potentially alter the natural history of Crohn's so that our outcomes are better (less hospitalizations and less surgeries). Asacol (which is what I'm taking) is only an anti-inflammatory, and while it is keeping my symptoms under better control, it's not necessarily healing the damage that's already been done which should be the goal of treatment. I'll know better next month after another colonoscopy (2 in one year, just fantastic). Biologics tend to heal more than just control.

Keep in touch about that you decide and what your experience is and I'll do the same.

Sorry to hear your appointment didn't go so well. Hopefully the impediments to getting the medication resolved. It's so frustrating when we're feeling sick and we have to deal with all these related issues. I'm still trying to get the increase in my med dosage approved by insurance, although they did give me at one  month at the new dosage, which seems to have helped and my fall flare is improving. We'll see when I go for the refill in 2 weeks.

Starting Remicade is a tough decision, and the potential side effects are pretty scary. My PCP broached biologics with me, so I might be close behind you and Deanna for having to make a tough choice. Then again, NOT treating IBD isn't  an option either. The more I read on biologics, the more comfortable I get at the thought of starting one if that day comes, and that Remicade or Humira can potentially alter the natural history of Crohn's so that our outcomes are better (less hospitalizations and less surgeries). Asacol (which is what I'm taking) is only an anti-inflammatory, and while it is keeping my symptoms under better control, it's not necessarily healing the damage that's already been done which should be the goal of treatment. I'll know better next month after another colonoscopy (2 in one year, just fantastic). Biologics tend to heal more than just control.

Keep in touch about that you decide and what your experience is and I'll do the same.

 Reply posted for PhillyBoy.

My appointment was not that great.  Doc wanted to put me on Remicade but it sounds pretty horrible, almost worse than the disease.  He said we can start on something  more mild and see how that goes.  I've been having alot of trouble getting the med he prescribed me (I cant remember the name). At first his office never called in the RX, then the pharmacy didn't have it so we had to get a RX for something else that was close to the same thing, then we had trouble getting that RX called in.  9 days later and I still have no prescription and I still feel crappy.  I'm really close to switching doctors because this is pretty ridiculous.  I did buy that book you recommended and started reading it.  I've since completely eliminated lactose from my diet and my nausea has been about 50% better.   I have a patient at work whose daughter has Crohn's so I talked to her yesterday.  She recommended an herbal remedy she found called aloe elite that worked for her daughter for a long time.  I did a little research about it and I think i might try it.  Read about it and let me know what you think.  www.aloeelite.com.  How have you been feeling lately?

 Reply posted for jgasaway.

How did your appointment go?

 Reply posted for spinnychick.

No personal experience, although I have now met a couple people who have benefited from Remicade for years, without any significant side effects other than fatigue the day of the infusion.

 Reply posted for PhillyBoy.

Today's appointment was a bust.  Methotrexate isn't working for me, so I'm going off that, FINALLY weaning off the prednisone.  Going in next week for TB test, chest xray for lungs and a colonoscopy.  From there I need to decide if I'd rather try remicade or humira next.  Any advice/experience appreciated.

 Reply posted for spinnychick.

That's fantastic! Hope your gastro and you can find a new med to get you into remission as much as possible before you set sail.

 Reply posted for PhillyBoy.

Hi Dave.  The cruise is a for real wedding cruise, been in the planning for 14 months.  We are headed on a 7 night Caribbean cruise with family and friends, being married on deck on the last day, kicking them all off and sailing on for 7 more nights to new ports for a honeymoon.  Lost so much weight had to buy a new wedding dress lol.  Second marriage for both of us.  Really looking forward to the break and looking forward to relaxing.

 Reply posted for jgasaway.

Hi. The road ahead is long and unpredictable, no way around that, but this is a treatable illness just like diabetes that people live with every day. Our lives will be different than we anticipated, but in an unexpectedly way  some good has come out of all this for me, and the more I read, the more that seems a common experience. Like me, meds will probably be part of your future, but in most cases they do help once they find the one that's right for you. 

My gastro had no diet suggestions for me other than if it bothers you don't eat it. Not much guidance. I'm a physician, and I think I had a total of 8 hours on nutrition which is pretty appalling but was pretty standard for medical education when I trained 10 years ago. Hopefully it's better now. I kept a fairly bland diet while flaring, but once I was in remission I cut out the most likely offenders (like coffee and fiber) and then kept track of what bothered me and haven't had it since. Once I felt better, I began to add that other stuff back in cautiously. For me, when I'm feeling well, occasional coffee is fine, and fiber is not an issue. I think avoiding fiber is in large part where and how severe your inflammation is and do you have a stricture. For me. the inflammation is in my descending colon, no stricture, and soluble fiber has actually helped me. That's been my experience and how I went about it figuring out what was safe to eat. Depending on how you're feeling right now, bland may be better. These are all good questions for your gastro.

One thing I just did last week and wish I had done sooner is to meet with a nutritionist experienced in IBD.  I'd talk to your doc about a referral to whomever they recommend. 

 Reply posted for spinnychick.

Wedding cruise in a month! Are you getting married or newly married? Either way congratulations. Not much to say about your ongoing symptoms., other than there are multiple treatment options since the methotrexate didn't work. I truly hope the next one is the right one for you. Please check in after your appointment and let me know how it went. Dave

 Reply posted for PhillyBoy.

Hi PhillyBoy,

Thank you for your help and kind words.  I did find a support group actually pretty close to my work in a hospital and plan to attend this week for the first time.  

I have been on the internet trying to educate myself but your right about hearing the horror stories.  There are alot of them and I think thats what overwhelmed me to begin with.  I was reading all these horrible experiences and figured thats what was next for me.  With the help of all the great people on this forum and my very supportive fiance I am feeling alot better about the situation at hand.

I did order the book you suggested and cant wait to receive it.  It sounds like it will help out alot.  I do have a question about triggers though.  I cant figure out what my triggers are.  Shall I eat a very bland diet and add one thing in at a time until I feel like crap?  I've heard a few different ways of doing it and they all seem to kinda suck.  I just hope once I see my GI on thursday he will give me some kind of good news or put me on meds to make me feel better.  Gheez, this seems like a long road ahead.  

 Reply posted for PhillyBoy.

Hey Dave, that's great news that your boss was understanding.  And good for you for persevering with the challenge, I'm sure you'll run laps around people. 

I don't think this methotrexate is for me, the nausea this week was bad, and with weaning off the pred I'm back to blood and weight loss .... sigh.

Seeing my GI this coming Friday and hopeful for some new ray of hope.  Wedding cruise is in 4.5 weeks and I want to be well (and med free) although I don't think he'll allow that, we'll see.

I'm back to the one easy job, the other, not so much as it is very much serving the public and I don't want that amount of exposure when my immune system is being suppressed by the methotrexate.

So, on goes the search for the miracle pill that works for me.  But, always on a plus side, it's Sunday and there is some GREAT tv on tonight, new shows premiering, old shows returning ... so beef wellington for dinner, millionaire shortbread bars for dessert, a nice bath, jammies and a good night in with the tv.  Sad, but really looking forward to it.

 Reply posted for MommaTy.

Poor lil pumpkin, illnesses always seem harder when they hit young ones.  My heart goes out to you and your family.   Congrats on him making it onto the growth chart, may his success continue. 

 Reply posted for MommaTy.

Best of luck to you as well. So happy to hear he's at least back on the growth chart, even at 3%. That seems like progress. This illness doesn't discriminate, does it? From preschoolers to the elderly, and those in between like me. His picture is adorable!

 Reply posted for PhillyBoy.

My son is also newly diagnosed, but he is 2 years and 9 months old.  But he has been having diarrhea since he was born.  He is my 4th child, so I knew when something wasn't right.  He is on Apirso 2 capsules a day.  He has diarrhea between 1 and 3 times a day.  He is only 25 lbs (which puts him at 3% for weight on the growth chart).  Before his diagnosis he wasn't even on the chart.  So Apirso has helped him to gain 5 lbs and 1 inch in height :)  He hasn't complained of belly pain since being on Apirso.  It also has helped his eczema to stay calm and his hair isn't like straw anymore :)  Good luck to you.

 Reply posted for spinnychick.

Hi Deanna. I'm feeling better and back to work, my flare is slowly waning. More pills to swallow three times a day, but it is what it is. I had a conversation with my boss that couldn't have gone better. Thanks for helping me with that. She even offered to donate to my Team Challenge attempt. Hope to get back to training this week. I'm determined to walk the thing if I have to but I remain hopeful I'll be feeling well enough to run at least part of it, although frequent bathroom stops along the way is just going to kill my time, lol.

How are you feeling? I truly hope you find remission soon. And I agree, whatever that is. Still trying to figure that one out myself. Crohn's is a humbling and unpredictable beast.

Off to the teen support group I started with another Crohnie. This has been one of the most rewarding experiences of my life. Being a shrink with this illness puts me in a unique position to help kids who share our illness, and they give me back as much as I give to them. Definitely have had a shift in my professional life. In a good way. Some good is coming out of all this after all. 

Dave

 Reply posted for jgasaway.

Hi and nice to meet you. I was diagnosed with Crohn's this past April. It's quite overwhelming at first, but it does get better. This forum is wonderful as are local support groups if you're fortunate enough to have one in your area. They can be found either through the CCFA website or your gastro.

Educating myself in those early days was key. Lot's of stuff on the Internet, but I found many of the blogs to be war stories of the sickest folks, so I found those more disheartening and discouraging than helpful. This forum is different. Like anything on the Internet, you have to take the good with the bad, and the accurate with the myths. I am reading a book "The First Year Crohn's and Ulcerative Collitis" written by Jill Sklar, a medical writer who has Crohn's herself. It's a few years old, but very factual and helped explain what to expect with this illness. Sort of a what to expect when you're expecting for Crohnies. Anything CCFA related is a good source of information that's trustworthy. 

My triggers will be different than yours, so all I can suggest is starting to keep a food journal of what triggers you. Once I started being mindful of what I eat, I was able to figure what was tolerable quicker and calm my symptoms. Still miss popcorn. Same with Meds, what worked for me won't necessarily work for you. I'm happy to share my experiences with what I'm currently taking if that would help after you follow-up with your GI. I did finally see a nutritionist who was experienced with IBD patients. That was very helpful. My GI offered me little guidance beyond "if it bothers you, don't eat it." In all fairness I'm a physician as well, and nutrition was NOT a big part of medical school training, lol.

Let us know how your appointment goes. We're here to support each other. If there's any upside to all of this, I have met some amazing people through having this illness.

 Reply posted for jgasaway.

Newly diagnosed in May and still not in "remission", whatever that is.  One thing I've learned is that everyone is different.  Alot of people can't eat certain foods, everyone is on different meds, different triggers for different people, etc.  I haven't changed my diet at all and have had no problems, however, I think I seem to be one of the few and far between.  Dairy, caffeine, spicy, popcorn, veggies ... everything seems okay for me.  But again, please understand I am a lucky one I think.  You need to slowly try foods and see what, if anything, triggers a tummy issue I guess.  I always look forward to seeing my GI because I'm hopeful he has wonderful news to report lol.  Do alot of reading online, that's what I did.  And these forums are great too.  It is very overwhelming/scary/embarassing ... all of it, but we are here to help, support, listen, laugh, etc. 

 Reply posted for jgasaway.

You need to totally avoid all roughage. This is not a good thing for us Crohnies. Just stay low-fiber in general. If you're really having issues with eating, consider going all liquid to give your sick bowels a rest. If you decide on this route, drink 4-5 ensure plus daily. A lot of IBDers also get secondary lactose intolerance so if you notice problems with dairy, avoid it. No seeds, nuts, things with strings, spicy, caffeine, carbonation. Be VERY VERY EASY on your bowels for the next few weeks or really until you start to feel a bit better. I lived off of rice and ritz crackers for four months because I just could not handle any foods really. Go by how you're feeling as well, if something bothers you, obviously don't eat it again. Everyone has different triggers. In time you will notice them and be very good at maneuvering food choices. Hope you start to feel better very soon! If you want to chat, my email is altman282@comcast.net. :)

 Reply posted for spinnychick.

Hope you start to feel much better soon. This disease is a rollercoaster. You never know what the day holds when you wake up in the morning. Has your doc suggested adding a steroid sparring drug to try to get you totally off pred? I'd be happy to talk to you more about all this. People tell me I'm a boundless source of information when it comes to IBD. lol My email is altman282@comcast.net. :)

 Reply posted for spinnychick.

hello everybody.

I am new to this disease so to speak.  I started with symptoms over two years ago and was just diagnosed with Crohn's this past friday.  Very overwhelmed and not sure where to start.  I'm not even sure how severe it is or what treatment options I have until my follow up next week . Should I start by changing my diet for the time being or just wait to talk to my doctor?  What are some of your guys' triggers and how can I avoid them.  I get them pretty often and it's very frustrating.  Thanks in advance!

 Reply posted for spinnychick.


About 10 days ago I started to be back in the BR many times/day, less formed movements, increasing fatigue, but no blood this time. Gastro doubled my Asacol, no prednisone yet. Lost about 5 pounds to date. My stress level has been higher, so I'm blaming the flare on that, but who knows for sure. Stress is the only new thing I can pinpoint. So this is what a flare is for me I guess, but again it'll be different for you and my next one may be different as well. If there's one thing predictable about Crohn's, it's unpredictable. But you know that. I'll let you know about the conversation with my boss. I work in child welfare, so if anyone should be understanding....

And I hear the same ill-informed comments as well. They mean well, but...

 Reply posted for spinnychick.

Hi Deanna:

This may be a wordy response as well I think I can answer your questions best by telling you my course so far.

My first flare was January into February with like you using the BR 6-8 times a day. Also lots of  bleeding, some pain but not intolerable, and about a week of fevers and terrible night sweats and profound fatigue. I lost about 20 pounds in around 2 weeks. I was fortunate that a prednisone taper plus Asacol got  me into remission fairly quickly, so that within a month I was going 2-3 times daily, no blood, no fevers. I was able to slowly get back into my usual exercise routine by the end of the following month. My appetite returned and regained most of the weight back I had lost. Seemed I was in clinical remission by the end of the second month. My gastro has described 3 types of remission: clinical, meaning diminished symptoms, endoscopic, meaning healing in my colon the next time I'm scoped, and microscopic, everything looking good on biopsy. So for me, movements were more consistent and regular and I did get back to my original  (healthy) weight.

Over the past several months, I've learned that certain foods (goodbye popcorn) may effect me in ways they didn't before, mostly less formed movements lasting no more than a day. So I've adjusted my diet. And tried to minimize stress.

 Reply posted for PhillyBoy.

Wow, I guess I know I'm talking too much when the blog won't let me type that many characters haha ... here's the rest ...


Both my family doctor and specialist have been amazing about giving me time off work, I am still supposed to technically be off until beginning of Oct, but am back at one job. The two jobs differ so much that one is much easier to go to, less public, easy washroom access, if I'm tired or sick I can go home, or close my office door. They've also installed hand sanitizers and got face masks in case visitors come in and are ill, they want to protect me with the suppressed immune system. The other job is super public and I'd be exposed to everything, it's in a bank, so not so easy to go back there.

Dependent on where you work, and your relationship with your boss/co workers, you may want to let them know what's going on. Most people I told didn't know about crohn's or think it's the "poop disease" so I usually pretty up the wording by saying it's an autoimmune disorder and my intestines are attacking themselves and I'm having malabsorption issues. Sounds alot fancier lol.

Let me know if your flare gets under control. Is a flare for most people just an increase in movements and pains?

And Hi David, I'm Deanna

 Reply posted for PhillyBoy.

Sorry to hear you are having your first official flare.  I don't even really know what a flare is or will be.  Since May diagnoses, I still go to the bathroom 5 - 8 times a day, not really urgent, but not normal either.  Do things ever get down to one regular movement per day at normal consistency?

The fatigue is more bothersome than anything, well that and the pains and mood swings lol.  I guess all of it is a nuisance.

How much weight did you lose this past week?  I lost 3 pounds, but ate well this weekend and gained it all back.  My weight tends to fluctuate a pound or two a week.  Does weight loss eventually stabilize?  Do we ever gain back all we've lost?

My gut is made of cast iron so far, and I've been able to eat anything.  Hot sauce, spicy, sweets, dairy, nuts ... everything others avoid.  Mind you, as I said maybe once remission hits this will change.  I still don't digest things and without sounding gross often find floating undigested carrots, garlic cloves etc.  Enough said lol. Fortunately, or unfortunately, my "attacks" seem to be more triggered by stress than food.  I can literally feel burning, stabbing pain when I get stressed.  Is it like that for people with certain foods?

As far as being on medical leave ... it's a challenge. I work 2 part time jobs, both were VERY accommodating and understanding.  It is embarrassing though.  I think people expect me to run to the bathroom every 2 seconds which I don't.  I do have alot of people making comments and offering unwanted advice .. oh, you need to eat more, oh, you should stop losing weight ... um, ya, trying, but thanks lol.  


more to come ...

 Reply posted for spinnychick.

My name is David by the way. Seems you should know my name at this point.

 Reply posted for spinnychick.

Hi. Having my first official flare since going fairly easily into remission in the spring, so fatigue and multiple trips to the bathroom are the norm at the moment. I'm in bed by 9 as well. Gastro upped my Asacol, so I'm hopeful to avoid Prednisone again. We'll see what this week brings. It's amazing how much weight I lost in just a week, as my default position when I feel this way seems to be to eat as little as possible. What foods work for you when your feeling poorly? 

This is also the first time I've missed from work because of Crohn's. My first flare occurred on a 2 week ski vacation this past winter and I was feeling well enough to go back to work when vacation was over. I've  been fortunate. Now I figure I need to have a conversation with my boss. Your first post said you were on medical leave. How was your employer when you told them?

Keep in touch.

 Reply posted for PhillyBoy.

Well, not so much nausea this week, but way more fatigue.  I am dropping tired by 9 pm most nights.  I've lost a bit more weight, still having crazy food cravings from the prednisone.  And I guess because the methotrexate suppresses my immune system, I have been blessed with all sorts of fun little infections to deal with which has added new meds into the mix lol.  It's all become a juggle and almost a puzzle to see what med will be "the one" to be "my cure".  :O)

How are you doing?

How was your week? How's the new med working out?

 Reply posted for PhillyBoy.

So far not too bad.  I'd asked my family doctor for a prescription for nausea but she wanted met to wait to see if I felt sick.  So ya, that kicked in yesterday and no prescription, but I've since called it in.  I think for the first round it wasn't too bad, I was expecting worse.  Alot of fatigue, kind of itchy tired eyes too, nausea on and off, especially after forcing myself to eat, and alot of disorientation and confusion.  From what I've read from other's experience, it lasts a couple days ... but as we all know everyone is different.  Mom suggested I get my shot on Friday so I have the weekend to work through side effects and I thought, forget that!!  I'm not killing off my weekends feeling like garbage lol.  Thank you for your kind words again PhillyBoy, you're right, we do need to have each others' backs and this place is a godsend to me to be able to talk freely and also hear others' experiences.  Happy weekend everyone!  Eat, drink and be merry!  And may we all visit the bathroom less frequently this weekend!! 

 Reply posted for kimar.

Kimar - funny that you said that because my first 2 months out of hospital I was ADDICTED to bacon cheeseburgers and steak.  Couldn't get enough beef into me.  That particular craving has subsided, however, I still get random cravings for strange things.  No appetite, never any hunger, just weird cravings.  This past week it has been chocolate chip muffins ... going to put on the apron this afternoon and get on that one haha.

 Reply posted for spinnychick.

I've been trying to figure out what to write. I haven't taken methotrexate, so have no experience to share. I truly wish I had more to offer you here. Our GI's are no Santa sometimes. We have an illness with no cure and imperfect treatments with potential scary side effects. I've been there too, and may be again. Please let us know how things are going. We need to have each other's back.

 Reply posted for spinnychick.

Hi-
So sorry about the prednisone. I still have a huge bottle leftover from this summer. I figure, if I throw it out, I'll need it again. But if I keep it, maybe I won't. I had a really hard time concentrating on things when I was on it.  don't know anything about the new drug. Good to have a steak dinner- we need all the protein and iron we can get. I've eaten more red meat in two months than I have in almost a year, probably. 

Good luck.

 Reply posted for kimar.

Dunno what I was expecting at my GI visit today, I woke up as if it was Christmas morning and that he would tell me I was in remission and going off drugs.  Back on increased dose of prednisone, on a new one called methotrexate by injection weekly.  Googled it and the side effects and honestly a bit worried and grumpy. 

If anyone has any experience with this drug, please feel free to share. 

Went out with a bunch of girls for an overpriced and absolutely delicious steak dinner to cheer up.  :O)

 Reply posted for spinnychick.

Spinny- I also look forward to seeing my GI doc - hope your visit went well. I look forward to my next infusion - (I'm actually getting used to being stuck with needles) because it is helping. No one in my family has this - my dad has irritable bowel, but I'm told that's a different animal. My mom and two of her sisters and several aunts have had breast cancer which is also inheritable. A different medical issue, of course, but we still worry about passing it on. I don't think you can worry about such things, just try to live life to the fullest each day. Of course, I've not had a child with a serious illness; I honestly don't know how I would handle it.

Now, when we say, "bless this food to my body," before meals, it has so much more meaning.

Lizzie's mom - I think that spouses and parents may have a much harder time dealing with these diseases than the patient, often. I know that my husband just felt so helpless, especially when I got sick a second time. You sound very brave, and your daughter will be stronger, too. I don't know how; I've just seen kids who, when they face tough times (I've had students with cancer), and when they have great family support, as your Lizzie does, they grow up to be amazing people. 

Philly-
I'd love to hear how your counseling goes. I've wanted to get into art therapy for many years now, and so would be interested in your thoughts. 

I made it though my first day back at work. I earned my nap today! Yes, adults can be much more understanding. Many teachers reminded me just to take it easy.
With kids, the school counselor plays a big role with helping the other students to understand a sick student's needs. Health comes first - all else will follow. 

 Reply posted for PhillyBoy.

Yes, a mother's guilt has kicked in for sure, wondering if they will get it.  From what I've read, and I am by no means well education on crohn's, still very new and learning.  But I read that the gene is hereditary, kids have 5 - 22% chance of inheriting, but then even with the gene there has to be some fluke-ish environmental factor that triggers your immune system to kick into full steam ahead mode.  So it's a crap shoot ... hahaha ... "crap" shoot ... sorry for the pun. 

My kids are in their late teens and also from what I've read it kicks in during childhood or early adulthood, so I'm hopeful we are in the home stretch.  That being said, I'm 43 and just diagnosed at this age.  Whether or not I've had it for months/years and ignored it, I don't know.

So big day for me today ... off to the GI in 54 minutes ... not that I'm counting.  I feel like it's Christmas and am so hopeful for a change in course of treatment.

Fingers crossed.

Thanks for sharing the info about the camp story, I will be sure to check it out.  Inspirational stories are always a good read.  :O)

 Reply posted for kimar.

Crisis in the metaphorical sense.

I've been thinking a lot about the kids and teens as well. I work with them in my daily life so it's not much of  a stretch. You and I are returning to work with (presumably) understanding adults; they're returning to high school and middle school. Not always the most accepting of places.

I've been talking with this phenomenal college student who's had Crohn's since she was nine and has signed on to do a support group with me. Hearing her story brings home how fortunate I am and I'm thankful. She just returned from her job as a counselor at  Camp Oasis and shared her experience. If you want to be inspired by a group of kids with our illness take a look at this summer camp run through CCFA.

I have kids as well, and the only fear I have through this whole experience is that I've passed this on to them as well. Irrational guilt, but there it is anyway. Is this something you've felt, having kids yourself. Any wisdom to pass on?

Hello, my daughter was recently diagnosed with Ulcerative colitis just last month.  She was in the hospital for a week and it was horrible.  Since shes been out she has not completely stopped bleeding but getting better.  I have researched this and changed her foods completely.  I guess my concerns is as a mother I feel myself always worried and getting depressed about her illness.  I try to stay strong but I find myself very stressed about her illness.  I watch when she eats, sleeps goes to the bathroom.  Please give any advice???

 Reply posted for Lizzies Mom.

Hello, my daughter was recently diagnosed with Ulcerative colitis just last month.  She was in the hospital for a week and it was horrible.  Since shes been out she has not completely stopped bleeding but getting better.  I have researched this and changed her foods completely.  I guess my concerns is as a mother I feel myself always worried and getting depressed about her illness.  I try to stay strong but I find myself very stressed about her illness.  I watch when she eats, sleeps goes to the bathroom.  Please give any advice???

 Reply posted for PhillyBoy.

I never thought about this being a mid-life crises, but it is life-altering, for sure. I still might use "prednisone moments," even though I hope I never have to go back on the stuff. You are welcome. I think I drove one of the nurses crazy one day with all of my ups and downs.

I think of the young kids who get this, and I've met people who've had colitis for many years, before these new and wonderful drugs came out. How did they deal with it? All in all, I think I got pretty lucky. 

Like you, I'd never been this sick before. but I am much more empathetic to those who are going through illness. My family is/will be stronger, too. 

 Reply posted for kimar.

I was diagnosed with Crohn's this past winter at 48, and I can relate to your post. That first flare was quite the life-altering experience. That was the sickest I've ever been. Until now I never realized how much I took my health for granted, taking only the occasional Motrin or course of antibiotics to a small handful of pills multiple times a day. Some days it feels like I'm marking time based on the next med. Not quite the mid-life crisis I was expecting.

I agree, we will get stronger. We may have more physical struggles, but I'm convinced our suffering will strengthen us in ways we may not anticipate.

BTW, I'm  going to use "prednisone moments" if it's OK with you.

 Reply posted for spinnychick.

Hi Spinny Chidk and all-

I was diagnosed with UC just this summer at age 52. I can relate to really detesting the prednisone, it can really whack you out emotionally. I called them "prednisone moments." Being so weak physically (I had two stays in the hospital and lost about 15 pounds the week before the 2nd stay), I suppose caused my brain not to function very well. For several weeks I was having a really hard time concentrating and I would get confused about the simplest things! 

I can really relate to your frustration with not getting better. I had almost two weeks between stays improved for maybe 1 1/2 weeks.  My doctors started me on Remicade during my 2nd stay, which is working very well. I feel so much better after two infusions, but I've still got a ways to go building up my strength and stamina. I was literally a rag doll when I got out of the hospital a month ago. 

But my real concern is keeping calm and collected as I start back to work on Tuesday (I teach). I have so much catching up to do. Emotionally, I'm ready for it, but missing the first few weeks will be difficult. Although everyone says to take it easy, reality will be that, as a professional, I will need to jump right in and git 'er done. This is partly what caused me to get sick in the first place. Even though stress may not cause this, It's got to be a factor with me. 

The whole summer was weird. Getting up 8-10 times just during the night became the norm, as did sleeping only a couple of hours a day for about 6 weeks. It took several weeks just to get a normal sleeping pattern back. 

Anyway, we are all different, yet all the same in that this disease, when we first get it, catches us by surprise. Who, me? I know I will be stronger. My husband and I are growing closer. the kids are pitching in more. But I've been resting at home on medical leave- this is the easy part. We'll see how I do in a couple of weeks.

Good luck to all.

 Reply posted for eyb31.

I have an appt to see GI day after tomorrow and super excited as weird as that may sound.  I hope dizziness is not dehydration as I have had it for  three months on a daily basis. And I still can't gain weight. I have a nervous feeling he may extend my prednisone again and I cannot accept that again. I am so tired of drugs and side effects that I really just want them to open me up and chop it out. haha.  Even more sick of friends and family looking at my body and telling me not to lose any more weight as if it is a choice lol  

 Reply posted for spinnychick.

That dizzy/disoriented feeling could be dehydration so would highly suggest calling your GI doctor and checking in.  Keep hydrated.  It's especially important with all the liquid you loose with bowel movements.  It could be your body readjusting to life outside the hospital?  I remember having trouble concentrating after having such a wacky sleep schedule.  When in doubt, I call my GI doctor.  It only takes a couple minutes and in my experience I've found it's better to be safe than sorry :)

 Reply posted for jhurley.

Will pop you an email, looking forward to chatting Julie.

 Reply posted for spinnychick.

I am brand new to this site..but not new to UC.. I have had it for over 25 years..have had many years of remission but this past 1 1/2 years can't seem to shake it. I was diagnosed with Thyroid Cancer in February, so of course the stress from that put my colitis into super crazy mode....would love to chat, exchange stories...my email is juliehurley55@yahoo.com 

Talk to you soon  Julie.

 Reply posted for planetpeace01.

Thanks, will def email you.  Super anxious to talk/chat/email anyone that can offer experience, advice, support, laugh, etc. 

 Reply posted for spinnychick.

I was diagnosed with Crohn's back in 2005, and may have had it since 2001. I've been through the severe side of it and also the remission side of it. As well as enough colonoscopies to make a person's head spin. I have scar tissue as well as polyps. If you need someone to talk to, just let me know. I'd be more than happy to help. I'll give you my second email futureteach29@gmail.com here, then can give you my primary once you email. Hope all is well and have a great night!!

 Reply posted for PhillyBoy.

Thanks for listening ... and sharing.  Glad others can relate/understand. 

 Reply posted for spinnychick.

"Normal" is such a tricky word now. My wife, friends, think now that I'm fortunate enough to be in remission (and you'll get there too), things will just go back to being as they were before. Much as I want normalcy again too, there's a new normal. I'm trying not to get stuck on this as being either good or bad, that'd be crazy-making, because it is what it is and life goes on. I've moved through grieving the loss of my old life and am doing my best to accept this new normal. Sounds like you've gotten to a point of acceptance too, which is fantastic. Like you, I don't sweat the small stuff anymore, and perspectives shift, and I find myself wanting to help kids with this illness. As difficult as it was for me to accept, and I'm a reasonably well adjusted middle aged guy, I can't imagine being a teen with this illness. Reaching out to them is helping me find a light in this misery of IBD. I'm sure you'll find your own light someday.

I wish I had answers to your questions, but you know I don't and I don't get the sense that's what you're looking for here. What I can do is listen to (or read) what you have to say, be a cheerleader, share my experiences good and bad in the hope that they'll be a some benefit. And you can do the same for me.

My "best" experience with IBD is finding a new purpose in life  to help kids with this illness as a child shrink.

Here's my worst Crohn's experience so far: My sons (13 and 10) are athletes and were on  lacrosse and baseball travel teams earlier this summer. Which meant spending long weekend days on kid's playing fields with only the grossest (are there any other kind) of port-a-potty's available before I was all the way in remission. We need to keep our sense of humor.

Take care, write whenever you need.

 Reply posted for PhillyBoy.

Wow, you know you're having a ditzy moment when you reply to yourself lol.  Let's blame it on the meds haha ... 

That's one thing I'm anxious to ask ... where is the disease in me, what area is affected?

I think I'm due to stay on 2/3 meds, it's just the prednisone that I've been almost weaned off twice and then thrown back on at the last minute, that's the one I want rid of. I think he said if I can't get/stay in remission without the prednisone, he'll put me on something alot stronger.

And yes, how true it is that we could talk to 100 people and it's all different for each of us. I don't understand how after 3 months I'm still not in remission and back to normal. And what is normal anyway now? I want to get off the steroids, and get rid of the side effects and see what I'm left with. Will I ever have an appetite or be hungry again? Will the other side effects go away (are they from the prednisone or the other drugs or the disease itself). So many unanswered questions ... just want normalcy again.

It's funny I get sort of excited for bedtime just because the day is done, whatever pain/sickness/side effects I've had that day are all behind and I get to wake up to a brand new day and see what that brings.

And yes, having an incurable disease stinks. It was and still is a hard pill to swallow. But it's not terminal and I am very thankful for that. And it has helped to put alot more into perspective. I don't tend to sweat the small things quite as much and am rethinking my life's path ... work life balance etc.

 Reply posted for spinnychick.

That's one thing I'm anxious to ask ... where is the disease in me, what area is affected?

I think I'm due to stay on 2/3 meds, it's just the prednisone that I've been almost weaned off twice and then thrown back on at the last minute, that's the one I want rid of.  I think he said if I can't get/stay in remission without the prednisone, he'll put me on something alot stronger.

And yes, how true it is that we could talk to 100 people and it's all different for each of us.  I don't understand how after 3 months I'm still not in remission and back to normal.  And what is normal anyway now?  I want to get off the steroids, and get rid of the side effects and see what I'm left with.  Will I ever have an appetite or be hungry again?  Will the other side effects go away (are they from the prednisone or the other drugs or the disease itself).  So many unanswered questions ... just want normalcy again. 

It's funny I get sort of excited for bedtime just because the day is done, whatever pain/sickness/side effects I've had that day are all behind and I get to wake up to a brand new day and see what that brings.

And yes, having an incurable disease stinks.  It was and still is a hard pill to swallow.  But it's not terminal and I am very thankful for that.  And it has helped to put alot more into perspective.  I don't tend to sweat the small things quite as much and am rethinking my life's path ... work life balance etc.

 Reply posted for spinnychick.

I get your frustration. I lost a fair amount of weight as well and get the eat more, have an extra serving thing, when smaller meals have clearly been the path forward for me. On the other hand, last week on vacation a friend questioned a food choice I made and if it would make me worse. Oh well, no winning and they all mean well. 

I believe malabsorption is due mostly to where your inflammation is. The small intestine is where most nutrients are absorbed, so if that's where your inflammation is, absorption would be an issue until your gut heals. Mine's in my colon, so less issues with absorption and pain, more with bleeding and diarrhea. Similarly, my understanding is that your pain will resolve as you move into remission.

I don't know about the no meds thing. I got the sense I'm on them for the duration. My follow-up isn't until October, but I'd be interested in what your GI says.

I've found educating myself about Crohn's as much as possible has been beneficial, although clearly the one thing I've learned if you take 100 of us with Crohnn's, there will be 100 different ways the disease manifests itself. 

I'm also a pediatric psychiatrist, so I've been reading a lot of the mental health lit on response to chronic, incurable disease. A lot of it comes out of the cancer survivorship literature, but I think it applies to us equally well to us as we're all survivors of this disease as we move on in our lives. One common experience seems to be that although we will all experience profound physical struggles, illness survivors also experienced emotional and spiritual growth possibly beyond what they might have experienced had they never gotten ill in the first place. Clearly I'm not at the point of finding meaning in any of this, but nice to know it's not only possible but according to what I've read may be a fairly common, shared experience.

 Reply posted for PhillyBoy.

Still feeling frustrated to be honest.  I'm sick of people telling me to EAT lol.  I've lost a fair amount of weight and people think everything will be fine if I just inhale a pizza or two haha.  I see my GI Sept 4, and have my fingers crossed that I can go off all meds.  I hear alot of people don't have to take anything.  I also want to know if pain is a daily thing for most, and how much to put up with.  Also curious to know if once remission is attained, if my body will absorb nutrients normally, or if the malabsorption is always an issue.  And yes, it is an "untalked about" disease and I would love to chat as much as possible.  Feels better to discuss than to keep it all in. 

 Reply posted for spinnychick.

Hey. Newly diagnosed a month before you. Life has become quite the adventure. Happy to chat more moving forward. This is a lonely illness for me so far at least. Friends try to be supportive, but they don't really get what this is like. No  support groups exist in Maine, so I'm working with CCFA to start one. I'm  fortunate in that my symptoms have been fairly mild and I have the energy to.  Only on one med, although it took some getting used to taking it three times s a day. Quite the change from the occasional ibuprofen. How are you feeling? 

 Reply posted for crogers8705.

So when you say the first year is bad, there's hope that this will get better?  I don't know if it's the meds or what, but there is something every day.  Lately it's this tingly/numb/dizzy/disoriented feeling.  No clue what's causing it, but it's driving me nuts.  I just want to get into remission and know what meds I'll be on and get back to a "normal" everyday routine.  How long does it take to get into remission, and how does one know if they are there?

 Reply posted for spinnychick.

The first year is always bad. I have found that low stress and Lyalda also lots of water are my combination. I can pretty much eat what I want but somethings make me feel blah. Family members never understand it, sometimes even my wife has trouble getting it. 

 Reply posted for spinnychick.

Welcome to our world!   Glad to hear you are out of the hospital ( I know Liz always feels better just being out of there!)   I've been at this CD thing for 8 1/2 yrs now.   My little one was diagnosed @ 4 (after being sick from infancy).   We've certainly had our share of ups and downs, but I can tell you the same that I have told my daughter for all these years.........do not allow this "disease" to define who you are, you need to work hard, play hard and define it!  
I'm happy to tell you Liz is doing well, she follows a low fiber / low residue diet, takes a 5 ASA, and other supplements, goes for regular labs, doc visits, and is as "ordinary" kid as possible.  She actually just came back from Camp Oasis and had the time of her life!  
I don't think family members know how to react, what to say or even know what they can do.   If you ever need a kind ear, feel free to reach out.  We are all here to help.   If you want to email me directly, (this has a character limit), you can:   lizziesmom@ymail.com
Be well.
Lizzies Mom

 Reply posted for Tamera.

Wow Tamera, sounds like you've had a rough go of it for sure.  I went back to both jobs this week and didn't make it through, got sent home early, went in to see doc and am now off again.  I only plan to stay home from one though.  Newest thing for me is being itchy on the prednisone.  Lost 6 pounds in 3 days this week while working, stress I guess, but slowly gaining it back.  I do not want to get back into hospital ... blech, no fun there at all.  Are you sure you'e work ready?  Are you doing a gradual return?

 Reply posted for spinnychick.

Welcome - I was diagnosed in February 2011  with Ulcerative Colitis.  Lost tons of weight, no energy, good days and bad.  Began using Canasa, a suppository as y disease was located only in the last 4 inches of my rectum.  Life and symptoms improved and I gained some weight back (more than I wanted, I now have sizes 2-10 in my closet). 

I experienced severe abdominal pain beginning 5 July 2012.  I was hospitalized for three days and released. (Incompetent physician)  I was admitted again o 21 July and spent 21 days in the hospital.  My UC has spread to my entire colon, had to have blood transfusions, TPN, 2 colonoscopies, etc during my stay.  I almost had surgery to remove my colon.  Not something I want to happen at 43 years old.

I have not been to work since 11 July but will start back this coming Monday for a few hours a day.

I began Remicade IV infusions on Wednesday and hope it will work for me.  Only side effect so far is fatigue the following day but I think it is too early to tell.

I have tried the natural route following the SCD diet.  It didn't work for me but I have a friend with Crohn's and he swears by it. 

Make sure to get a good GI doctor who specializes in your disease.  It has made a world of difference for me.

Take care and feel free to send anyone questions or things you want to talk about. 

Tamera