Teenage Son with Crohns

Hi,
My son was diagnosed with Crohns when he was 10.He was very sick and wasn't responding to very well to his medicines. He was put on Remicade and stayed on it for about 4 years with great success. The crohns was 100% under control and his results from his scopes were perfect. We made the decision to come off the Remicade and he stayed on Pentasa. Long story short, 2 years later his crohns is back in full force. We tried to put him back on Remicade but his body rejected it, he had a reaction and couldn't breath and had chest pains.I was in shock since it worked so well for him as a little boy. They said we were going to try Humira next. I don't know much about this drug so any information would be greatly appreciated. I am so worried about my son.

Hi sruberti! I learned the tough way to not quit medication, especially if it's working. It's especially rough if the med is a biologic, like Remicade since it usually won't work again due to the antibodies you build up once you stop it.
Your poor son... I know it sucks to be blessed with years of remission and then rediscover the evils of Crohn's. I really hope the Humira works for him. I'm on it and it has been a big success for me. You may want to browse around the Humira sub forum. There's loads of info and experiences with the drug over there. Will he get to start it soon?

Unfortunately, the body builds defense against remicade if you stop it . I hope you can get the beast back under control quickly!

Emily, its good to know that the Humira is working for you. I really cant remember ever being told that he might not be able to go back to Remicade. I might of re-thought my decision back then. Im praying he will have success with Humira , like you have had. He will be a senior next year and next college. We are waiting on the insurance now. I am hoping maybe in a week or so. They have him on steroids right now and a antibiotic with his pentasa. I think he would benefit from this forum, he doesn't know any other teens with crohns and I think he feels pretty isolated sometime...nobody to talk to that truly understands what he is going thru. Do you use the pen or needle

Hi there and welcome to the forum. I am sorry to hear that your son has now come out of remission it is soo disappointing when this happens. Humira is is the same realm as the Remicade but is actually considered by some to be the better of the two to go on. Definetly check out the above mentioned forum to get further info about being on this. There is also a teen only sub forum in our support section if you son would like to have a little look around......

I hope he can be feeling better soon, sending best wishes.

AB
xx

I started with the pen but now I use the syringe, I personally prefer it because the pen injects very fast and is a bit more painful (in my opinion), while the syringe allows me to control my injection. It's really up to him and his comfort level with needles. He can always switch from one to the other if he changes his mind. And he should definitely check out the forum. It's a huge help to have this virtual support system! Plus there are plenty of us high school/college age members on here around his age. I hope the insurance approves everything soon!

Welcome to the forum. I can understand your worry, it must be overwhelming at times My heart goes out to you, your son, and your entire family.

You've come to the right place though! We're here for all of you anytime you need us.

Do you know specifically where your son's disease is active? What sort of symptoms is he experiencing?

Again, welcome!

David,
His disease is in the upper part of the large intestine and pretty much throughout the small intestine we believe. He had a fistula also which is being treated with antibiotics. He can't seem to eat without feeling nauseas, stomach pain and diarrhea. We have him on weight gain shakes but I think we need to use either almond milk or soy because reg milk has been cramping him up really bad.

You may want to look into some of the enteral nutrition formulas that are dairy free. There are a couple out there. Most of the typical "weight gain" shakes aren't too good in my opinion.

In addition, due to the location of his disease, have you had his vitamin D and vitamin B12 levels tested? People with Crohn's Disease are commonly deficient in them and proper supplementation can make a big difference if they are indeed deficient.

The shakes are called scandishake? Got them from hospital. I'll check with his doctor about vitamin B12 and D. Thanks so much