teenager with ulcerative colitis

Hi all. I am a parent of a teenager with ulcerative colitis. He is 14 and has been suffering for over a year. I am just looking for advise. He has been on everything from delzical, 6-mp, remicade, and now entyvio. He has not been able to come off of prednisone, although I do not think it works for him anymore. I don;t think the entyvio is working either. He uses the restroom 5-6 times a day (including waking 2x's a night). The presence of blood comes and goes. He has stomach pain and urgency. He also take vsl #3 but I can not say this is working either. 3 hospital stays, 2 blood transfusions, and lots of stress due to his condition. It is selfish of me to just want a "normal" childhood, but I feel like I am running out of options. His doctor wanted to use methotrexate injections but my son refused. I would appreciate any advise. I feel as if I am letting my son down, and simply want the son I used to know back.
Many Thanks
Michele

How long has he been on Entyvio? If it fails, surgery or a clinical trial are probably his best bets. Unfortunately, hes certainly not alone in this. Im also a non-responder and have been since I was diagnosed at 16. At least with UC, surgery, although not perfect, can make things more normal

UC is a tough disease. Please don't feel like you're letting him down. Even the doctors are often at a loss so it is certainly not your fault in any way. Yes, it is selfish of you to want him to have a normal childhood but we would all like to be selfish and not have this disease. It comes with being human, I mean, who really wants to be sick or have a sick child? We just have to play the cards we are dealt. Has he ever done rectal meds? Not something a 14 year old boy really wants to do but they can be of a lot of help to many of us. Believe it or not, something somewhere is working because most of us, at our worst, were going 20 -30 times per day. Do you have any clues as to what started this off in the beginning? Was he being treated for acne?

Was it Accutane? There is a huge lawsuit pending for Accutane-induced UC. As a rule I stay far away from any acne meds. Not worth it at all.

But honestly, IF that was the trigger (impossible to say) you cant beat yourself up over it. There are a million things that CAN trigger the disease. If it wasnt the medication, odds are, something else would have triggered it. The important thing is looking forward, not backward.

Sure see what Mayo says, they might think out of the box, and try new things.

In addition to Mayo, I'd suggest geting a surgery consultation, which is a question and answer session with a surgeon with absolutely no commitment. Ask what concerns you/him (how many surgeries, down time between each, quality of life afterwards, complications, etc.).You should research all the treatment options, including surgery. Explore and know all of your treatment options, and make the decision you think is best.

Dom353535 said...
Surgery has always been on my mind, but i feel as if it is taking away one problem and potentially creating another, and at 14 years old it seems so sudden to choose surgery. His suffering is all that makes me consider it.

I disagree on trading one problem for another. 95 percent of uc patients who've undergone surgery are happy with their results, and many wished they'd done it sooner. After surgery there's a chance of complications like pouchitis but most say its way easier to deal with than uc ever was. Never think of surgery as giving up, it's just another treatment option that gives medication non-responders their lives back.

Uc surgery is either a j-pouch or end ileo.

A j-pouch eliminates the need for a colostomy bag, you poop normally. For that reason, a j-pouch is the common go-to surgery for uc (there are exceptions for those who don't meet the requirements). Your large intestine is removed, the end of your small intestine is made into a pouch/reservoir and attached to the anus. You have non urgent bms and control. It gives you 4-6 bms a day, often done while peeing.

An end ileostomy involves removing the whole of the colon (large intestine). The end of the small intestine (ileum) is brought out of the abdomen to form a stoma, and a colostomy bag is attached.

Please look into the SCD diet and fecal transplant. There are things you can do for your son other than harsh drugs and surgeries.

For somepeople, meds alone won't give good result. If you haven't yet - watch his foods. There are a few well known diets for UC like SCD, paleo and gaps.

Also check into sunflower spinach seed diet in this forum.
Some here got into better state by adding LDN. Some others by adding nopal.

Whatever you do - it's all trial and error with lots of patience.

Also before moving on to surgery try fecal transplant as a last resort.