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Son newly diagnosed with Crohn’s


Sat, April 14, 2018 1:23 PM

First I’m sorry if I ramble. I am so scared, overwhelmed, and angry! My 13 year old son Andy was diagnosed with Crohn’s. I don’t understand how this could happen!!
Andy never complained of pain! The only issue was constipation! I would talk to the Dr’s over and over again. Have him eat yogurt, have him take Miralax, not everybody goes everyday. I heard it all! A couple months ago Andy started waking up in the middle of the night with loose stools. I asked his Dr. She said he’s probably under stress told me to see a physcraphist(?)!! Instead I got Andy in with a GI dr. First she was wore about his height and weight. He’s 13, 4’9 and 70 pounds. Forever we were told not to worry because his dad and I are not big. Then she got blood tests. His iron was low and an unidentifiable inflammation. He did the sweat test for cystic fibrosis. That was negative. Then he did a upper endoscopic and colonoscopy. Two days ago he did the MR3. You hear the stories, the pain, the heartbreak. How do we handle this? Could this be a mistake? He is on 40mg prednisone now. Why so many horror stories about that? Next they want him to either get infusions or shots! What is better? This is my baby! I want to stay strong and positive. Is there any positive? Thank you to whoever took the time to read this. Any, any advice or anything is very much appreciated!

FPO Abrown806
Joined Apr 23, 2018

Sun, September 16, 2018 9:40 PM

Reply posted for Abrown806.

Hang in there.  We have so many options now than I had when I was diagnosed at age 10 in 1966. If the currently approved meds don't work we have new medications on study all over the country and I believe we are entering a new era of small molecule therapies such as the JAK kinase inhibitors Xeljanz being the first to market.  So at current we have 5 biologics for Crohn's disease and 4 biologics for UC plus Xeljanz with more on the way.  It is not always obvious which medication is the one that the individual patient will respond to so there is some degree of searching to find that optimal drug for the individual patient.  

FPO rproodmd
Joined Sep 15, 2018

Thu, September 06, 2018 1:42 PM

Reply posted for Abrown806.

Hi everyone, I am new to this as well. My daughter is 11 and has been dealing with symptoms of Crohn's for over a year with progressive symptoms leading to the diagnosis. She was admitted to Johns Hopkins, which was a blessing, as we are involved with one of the nation's leading experts in Crohn's. I too find that I am sad, angry, scared, etc... I feel like it is my job to fix things for my child, but I cannot fix this for her. I feel so helpless and that hurts. I can't stand to see her like this and not be able to do anything to change it for her. I am trying to educate myself and ask questions of her GI, but it is a process and I want the immediate fix. I know I have to come to terms with that and not feel so defeated so I can do the only thing I can do for her... support her and comfort her; after all, she needs me. I usually am a very strong person and don't like to ask for help, but I desperately need it and I am hoping to find some of that here. I am finding that my daughter struggles with making eating changes. Does anyone have any recommendations for kid friendly Crohn's meals and snacks?

FPO amylong
Joined Sep 6, 2018

Sat, September 01, 2018 6:07 PM

Reply posted for Abrown806.

I am so sorry for your son.  Research as much as you can do you can develop a better understanding of the disease.   It really helped me when I was diagnosed with UC.  I wish you and your boy success and stay positive!   😇❤️

FPO ToniC
Joined Sep 1, 2018

Thu, August 30, 2018 1:00 AM

Reply posted for Abrown806.

Thank you for sharing your son’s story. My 13 year old has just been diagnosed with UC and will be starting Remicade soon because he is symptomatic on less than 40mg of Prednisone a day. I too am terrified and heartbroken. Worrying all the time now about the risks of the biological. Trying to be positive, but just so scared for him.


FPO Traceyzaidi
Joined Aug 30, 2018

Tue, August 28, 2018 9:25 PM

Reply posted for Abrown806.

Hello, your story sounds much like mine. My son who is 15 went in and out of doctors with issues we were concerned about. Finally his weight went down to 64 lbs and he was just bones, he was waking very often throughout the night going to the bathroom and just basically stopped eating. I knew something was seriously wrong. He was seen in the ER at children's in Pittsburgh in January of this year and was diagnosed very fast with Crohn's. We were in the hospital for nine days. Very long stressful nine days. He was on infusions during hospital stay and they started on Prednisone and methotrexate injections. After a few months he was off the Prednisone and he's been still doing the methotrexate injections weekly. He has gained so much weight and looks healthy again and so much more active and happy. He's even noticed how much better he feels. I can't say we are out of the bad weather yet, but doing better. He had a scope last week and there was still inflammation, not as bad as it was but still bad enough the Dr felt we need to start humira. I actually just got the call today we haven't even started the new med yet. It's so upsetting in a way but I know he's doing better then he was. Today I feel I'm starting over in learning with this new medication humira, and he'll now take methotrexate by a pill instead of injection. I'm not sure what your son is on, guess I'm looking for any advise on this new medication we're starting. I don't have much advice being I'm new to all of this also but I know it helps to read others stories about it all. It really does help cope with it all. I read stories all the time. I can tell you it's hard and there's tears but reading and learning about it really helps. And just venting helps on here too. I wish you all the luck and your son. I hope he's doing better.

FPO Cammy
Joined Jul 6, 2018

Tue, August 21, 2018 11:14 PM

Reply posted for beckdavich.

My niece was diagnosed with crohn's disease when she was 8 years old. She graduated from college with two master's degrees and just got married in March. She is doing extremely well. Stay strong and find a very good GI doctor. There are many different treatments that work for many different people. I'm praying that your son goes into remission soon.

FPO Bgrammasueb
Joined Aug 21, 2018

Thu, July 05, 2018 7:17 AM

Reply posted for Sara.

Hang in there. My son was diagnosed with Severe Ulcerative Colitis when he was the same age. I cried every day for a month. My adivice to you is research, research, research! I also joined the Crohns and Colitis Foundation on Facebook. That helped me the most. I had someone to talk to, ask advice, and vent. Find a good pediatric GI. It took me almost a year to find one we loved, but we found one. Also, it took a year to find the right medication. After a year of Humira Injections (they are very, very paingful), my son had built anibodies to it and he could not take it anymore. His GI doctor started him on Remicade Infusions every eight weeks and he has been in Remission since August of 2017. We go to the hospital, he get's an IV of Remicade and it takes about three hours. He feels great. I am also happy to announce that he almost weighs 90 pounds and is almost five feet tall. He runs and water skiis competitively so that also keeps him thin. My point though is that he is well and active. My prayers are with you. Good luck, try to stay positive, and do a lot of research. Knowledge about Infalmatory Bowel Disease will really help you. 

FPO beckdavich
Joined Jul 5, 2018

Fri, May 25, 2018 8:58 PM

Reply posted for Abrown806.

Sorry to hear about all the sweet young children diagnosed. I am in process of getting dx, esr crazy high, fecal calprotein insanely high. Ileocecal valve is very very bad shape but I haven't been feeling too bad. I tired to eliminate lots of processed food and seems to help. I am soo worried. My teenage son is describing similar symptoms. My mother had crohns and then colon cancer, my grandfather same story, great grandfather well he was in Aushwitz but we were told him had gi problems too. I am terrified I passed on bad genes to my son. But we have to do what we have to do. Gd give us the strength

FPO Sara
Joined May 19, 2018

Mon, May 14, 2018 12:13 PM

Reply posted for Abrown806.

I'm sorry to hear about your son's diagnosis. I understand how hard this news is for a parent, My 15-year-old son was diagnosed with Crohn's in February. He appears to be handling it well, but my husband and I have had so many emotions, sadness, worry, and anger... he's already had three eye surgeries so it's seems so unfair that he has another condition to cope with.

The good news is that he appears to be doing well. He gained 30 lbs on steroids (his starting weight was 84 lbs) and feels very well. He has been on Humira injections for nearly 2 months. This is his final week on steroids, so I guess we will start to learn if the Humira is effective in controlling the Crohn's on its own. He has been very brave with the injections and has been able to administer them by himself (although I've done some as well). 

The sad thing is that I will always worry... will he develop side effects, will the humira stop working, will he get sick from an infection? But I keep telling myself to take it one day at a time. I do want to learn more about nutrition to support his health, but the GI doc has not been helpful in that area.

Best wishes to you and your son as you figure out what is best for him going forward. You are not alone!

FPO LEGOCAT
Joined Feb 18, 2018

Mon, April 23, 2018 3:19 PM

Reply posted for Graciesmom.

Im very sorry to hear about your daughter. I really wish I had something positive or some kind of wisdom to share. I don’t. I am still angry and crying everyday. My son is doing good right now. Wednesday he gets his first infusion of Remicade with Benadryl and steroids. He knows he has Crohn’s, knows incurable, knows about the treatments. He just wants to feel good. Even though he didn’t think he felt bad but is actually excited to feel good. Probably doesn’t make sense. We tell jokes about Crohn’s. Let’s say we got pulled over for speeding, “I’ve got Crohn’s, gotta go!” Can’t join the military. Silly things. I try to stay strong in front of him. We talk a lot about summer. Sleeping late! He’s been having a rough time sleeping because of the steroids. We just try to talk positive in front of him. 
Good luck yo your daughter and your family. Keep me posted on how she is.
amy

FPO Abrown806
Joined Apr 23, 2018

Tue, April 17, 2018 1:53 PM

Reply posted for Abrown806.

My 10 year old daughter was just diagnosed with Crohn's  last week and we are feeling very overwhelmed, too. She has been having a hard time processing and making sense of what is happening. She is currently taking Prednisone while we explore dietary treatments or Remicade infusions. This is all so new and I feel so alone. I am exploring support groups in our area for her. Please keep me updated on your son's treatment.

FPO Graciesmom
Joined Apr 17, 2018

Mon, April 16, 2018 4:49 PM

Reply posted for Abrown806.

You just read a page from my book as well.  My son was diagnosed in January, at 15 years old.  No pain ever - but years of constipation, and then the bloody loose stool started over the summer.  His blood levels were apparently extremely low - enough for the doctor to order a colonoscopy immediately.  And that is when we learned he had crohns.

For a freshman in high school, I can't imaging anything worse.  We are lucky that the medicine he is on (Meslamine and Uceris) seems to have it pretty much in check, with the exception of a recent calprotectin test that came back very high.  The school has been very supportive, as have his friends.  We are learning as we go and amazed at the number of teens affected with this disease.

FPO zachsmom2002
Joined Jun 11, 2018

Sun, April 15, 2018 11:07 AM

Reply posted for Abrown806.

Sorry for your son.  It’s a terrible disease, and if affects everyone differently.  Same with the treatments.  I had ulcerative colitis, and now have Crohn’s.  Prednisone was the only Med that worked, but the side effects are horrific if taken long term.  It gave me cataracts, osteoporosis weight gain.  Read up on it. On the bright side, I think they are making real progress with biologics like Remicade and entyvio, although they don’t seem to work for me.  Some people have success altering diet, sometimes it just goes into remission.  Crohn’s is a nasty disease, but it doesn’t have to ruin his life. Your son can still lead a fairly normal life.  There are a few tricks to managing it.  Good luck.  This website can be very helpful.

FPO charbs
Joined Oct 31, 2016

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