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My 18 year old son with crohns

My son has been in and out of the hospital for the past six months now diagnosed with crohns..He is currently admitted in the hospital because of a C Diff infection which is gone now but he is 5'9 and 106 pounds so he is being pumped up with nutrition and they want to possibly do surgery and/ or Remicade infusion...I'm a concerned mom, has Remicade helped anyone here, side affects? Any ideas on weight gain? Thank you for listening
 
My son was dx'ed at 15 his CD was severe and he went straight to remicade. It was awesome he went to feverish, fatigued struggling with pain to after the first dose feeling like he was a normal teen. We had to up the dose, shorten the schedule and add mtx. The remicade was a miracle drug for us but one area of his disease was so severe the remicade just couldn't tackle it. So we ended up having a resection. He handled surgery fabulous and was back to his part time job and school within a week or so.

Each infusion is done in a GIs IV lab, a hospital IV lab or a stand alone infusion center. His GI had an on site IV lab so that is where he got his infusion. They are IV infusions and have the convenience of being able to do blood work and checkups at the same time. They can take some time especially in the beginning. But they can speed them up if he tolerates it well. The schedule after loading doses can be anywhere from 5-8 weeks and some times four if the GI feels it is warranted.

My son didn't really have any side effects and usually went back to school or activities after infusions.

My son had to stop infusions before surgery and when he started back he had developed antibodies which can happen if you stop the biologic for a length of time. So he had to switch to humira, another biologic bit it is a self injection. He is 18 now and just graduated. We just had a scope that looked great we are just waiting on the biopsies.

I'm sure many others will be by with their experiences. I hope your son finds remission quickly.
 

Lady Organic

Moderator
Staff member
hi and welcome. have you heard about fecal transplant? this has become a new recently approuved very effective treatment for C diff. On top of it, research and clinical trials are currently ongoing to test for crohns treatment. Some recent research result are very encouraging. I'd question and inquire about that to your GI team. good luck. there is also a thread on the forum regarding fecal transplant.
 
DS was DS at age 7 and was placed on remicade at age 8.
It was a miracle drug for DS and gave me a normal kid again
I know its hard but you will get back to normal
 
Hi! Welcome to the forum!

It's really good that his doctors are working to optimize his nutrition. Is he having TPN or enteral feeds? Improved nutrition AND getting the inflammation under control should lead to weight gain.

Do you know where your son's disease is located in his bowel? And does he have any complications like strictures or fistulas? What sort of surgery are the doctors proposing?

When I was on Remicade my only side effect was fatigue after the infusion - this effect wore off after the first few infusions.

Lots of luck. It's not easy getting your head around a Crohn's diagnosis and the treatment options but this forum is great for advice and support. One of the best things you can do is to stick around and keep asking the amazing people here for their views and experiences and I'm sure you'll get lots of support :ghug:
 
Welcome to the forum. My Daughter is 18, she has been on remicade since almost 3 years ago and in remission. I hope you find something that works for your Son and he can get better soon. Feel free to ask any questions. Best wishes.
 
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