My 18 year old son with crohns

[jerseygirlkrissi72]

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

 

[Clash]

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]

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.

 

[Mr chicken]

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

 

[24601]

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:

 

[araceli]

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.

 

[Jennifer]

Hi jerseygirlkrissi72 and welcome to the forum!

I copied your thread into the parent's section as there are a lot of parents here that can help answer your questions. 18 isn't too old to get help from this section as he's still your baby.

In another post you mentioned that he was suicidal so it's important that you both get as much help as you possibly can. :ghug:

 

[awmom]

Hi, and welcome! My son is 19 (diagnosed at 14) and after trying many meds they finally put him on remicade. The infusions are easy though somewhat lengthy at first, and his only side effect is that he feels tired the next day. He ended up with a resection 2 years ago because he developed a stricture and too much scare tissue. The remicade has kept his inflammatory markers and sometimes wonder if we could have avoided surgery if he had been started on remicade earlier. Our big problem is that he has been unable to gain weight at 5'5 and 97 pounds. Having said that, It seems like most of kids on this forum, once their crohns was brought into control, they were able gain weigh normally. It is a process, but I'm glad he is being given good nutrition at the hospital and hopefully will be on his way to recovery soon. I know how stressful and scary it can be to see you son so thin, and the meds seem equally as scary, but remi has been so good for many of the kids. This forum is great, so ask away if you have questions or doubts. I hope your son gets to feeling better soon!

 

[lenny]

My son has been sick since 14, diagnosed at 16 and is now 18 also. He was 5'10" and 104 lbs in September. He is now 6' and 160 lbs. He started Remicade in April and so far it's going well and has given him a lot more energy.

 

[Jmrogers4]

Welcome,
My son has been on remicade for about a year and a half now. He will be 16 next month, diagnosed at 10. He started out at a weight of 89 pounds and 5'1" and is now 130 pounds and 5'9".
No side effects, he did have a headache and was tired several hours after his first infusion but nothing since then. For us the weight gain begin almost immediately, he was starving about 1/2 way through the first infusion but it can take some time for remicade to reach full effectiveness.
This past year has been incredible he has not missed any school or not been able to do anything because of his Crohn's in fact he doesn't even think about it except for once every 8 weeks for his infusion and he looks forward to that because he knows how well it makes him feel.
He has an infusion today and he is looking forward to it so that he can enjoy the summer worry free.

 

[Maya142]

Both my daughters have been on biologics for years. No real side effects at all - no increase in infections or anything like that. They both were a bit tired the day after their Remicade infusions, but really that's it.
For both of them, biologics have been miraculous.

Hang in there :ghug:

 

[Mehita]

My son has been on Remicade for 18 months. In that time he's gained 20 pounds and four inches. It has been a game changer for him and no side effects. Sometimes a little tired the day of the infusion, but I'm healthy and even I get tired while sitting there. Then again, he's also had infusions where he's come home and been bouncing off the walls.

The other nice thing about Remicade is that there is flexibility. We're in the midst of dosing and timing changes since some symptoms were starting to reappear. Lots of tweaking can happen before you might have to move on.