Just wondering what other jpouchers would do

chili123Member

Just curious what fellow jpuchers would do....
I've had my pouch 17 years and no meds. They found 2 strictures in the terminal ileum and recommended entyvio to reduce inflammation, which is causing the strictures. I got a jpouch bc of UC but now they are telling me I'm "crohns like disease of the pouch". My stool sample was low....was 57 but they still recommended entyvio....iv got a newer gi doctor at Cleveland clinic. I did my 1st infusion and now reading all the ugly about stopping biologics and the scary stuff....which is intentionally didnt do bc i knew id freak out. I started bc I felt i had no choice to avoid these strictures coming back. This is consuming me....I hate the situation I'm in. I'm 57 years old....grateful for the 17 pretty quiet years I've had but absolutely find this stressful.

Would you try to control inflammation with no meds or do meds?

12/2/2410:47 PM

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Scott FMember

I'd take the meds. The misery from strictures isn't hypothetical, and your body has already expressed what happens without medication. Most folks eventually need some medications to manage this or that, whether or not they have a J-pouch.

12/2/2411:48 PM

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Jan DollarModerator, RN, retired

I would take the meds, and I have. Biologics were experimental when I had my colectomy and j-pouch. Remicade has done a great job of inducing remission of my chronic pouchitis. I wonder if I might have avoided colectomy if biologics were more available at that time. My new GI was telling me that the bigger issue now is that biologics are not started early enough.

I have been on one biologic or another for at least 15 years and I have had no side effects.

Jan