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Please help! No meds are working for UC

Sat, April 24, 2021 4:26 PM

My now-22-year-old son was diagnosed w/ UC in 2017. Since then, he's tried Entyvio, Remicade, Xeljanz, and now Stelara (not to mention Uceris and Melasomine as supplemental meds), all to no effect. The only things that have hellped have been Prednisone and steroid enemas (esp the latter). The enemas recently put him into remission for the first time, and since he was just a few injections in w/ Stelara (every 4 weeks), we thought he'd turned a corner. Dr. has him slowly tapering off the enemas, and within the first week of not doing them every day, all his symptoms returned.

Has medication failed anyone else, and what did you do? We're frustrated and desperate. Thank you.

Melle
Joined Apr 24, 2021

Sat, November 20, 2021 8:54 AM

Reply posted for Melle.

My son had a similar response to all meds--he was a primary non-responder. (He'll be 22 in Jan) We tried all possible meds at the time. Infusions and pills and everything. The only thing that touched the symptoms were steriods, which make him feel so awful he would refuse treatment--they made him not sleep and feel like he wasn't himself. He had his colon removed because there was nothing else to do and his life was in danger. It was a three part surgery and he had an ostomy bag his senior year of high school. The surgery saved his life! He entered college thinking the worst of his symptoms were behind him. Unfortunately, he continues to have flare-ups and continues to need sterois enemas in college--it's his junior year. Private bathroom and understanding roommates are a must! (We got him an emotional support cat and that's been so good for him!) He is now living with the disease somewhat successfully. We were hoping for more of a normal life, but he still contends with hospital visits and whatnot. But he's able to live with it, and most days go to classes. This year he's been hospitalized once (he had to fly home because the hospital near him refused to do tests or admit him from the ER--GRRR I am so angry!) for a week, where we worried about an obstruction, but it turned out to be a bacterial infection.

My heart goes out to you. This is a hard road, and know that we are so happy to have done the surgery, but that it didn't cure my son. We are blessed with the most amazing GI team who have advocated for him in all situations. His GI doctor has called me up on a Saturday morning saying she couldn't sleep all night thinking about his case. This keeps me going when we hit roadblocks when other doctors think my son is healthy because he looks healthy-ish on the outside. Please feel free to reach out to me directly if you need support -- Heather hegkelly (at) gmail (dot) com

hegkelly
Joined Nov 20, 2021

Fri, August 20, 2021 11:25 AM

Reply posted for Melle.

I am on Humira and it was a life saver! I had to take prednisone for a month first while taking Humira at the same time. I think prednisone got me to remission and Humira has kept me there ever since. I've been on it several years, only had one flare up where I had to take prednisone again but that was the only time.

bdestefano87
Joined Aug 20, 2021

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