im 20 years old and had my ileostomy takedown in January 2016. I have had cuffitis since then and nothing seems to be working. I've tried cortifoam, canasa, humira. The only relief I had was for about a week when I was on a high dose of prednisone. My symptoms are 24/7 gas, very difficult to empty stool and gas, a lot of straining and pain whenever Im on the toilet. What else can I try besides prednisone
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Jesse, you're telling a story that usually requires pouch advancement surgery (with mucosectomy) to resolve. I'm sorry - I wish I had something easier to suggest. This is a raw deal. Has your GI told you he's run out of non-surgical approaches? Are you seeing a GI rather than a surgeon now?
if you decide to have the surgical treatment, it's important to select a surgeon that has done many of these procedures. It's a hand-sewn technique that requires plenty of skill and experience.
I've been in contact with both my surgeon and GI from Mt. Sinai in Manhattan. We are trying to avoid surgery at all costs. We may try entyvio but if that doesn't work I think surgery is necessary. I know my surgeon is very good but I would like someone who does this surgery more than anyone else. Thanks Scott
Another biologic may well be worth trying. I think you know it's a long shot, though.
Dr. Remzi has recently relocated from the Cleveland Clinic to New York City. If I needed a pouch advancement I think I'd be talking to him.