I seem to keep pouchitis. I have failed Cimzia, Remicade, and Entyvio. I'm currently on Stelara but it doesn't seem to be helping. Have been on flagyl and cipro. I have also had a jpouch redo. Any suggestions or doctors I could see for help?
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Sorry to hear about your suffering. Are you open to getting a permanent ostomy if things do not clear up??? And have you had issues with an ostomy in the past???
@dr posted:I seem to keep pouchitis. I have failed Cimzia, Remicade, and Entyvio. I'm currently on Stelara but it doesn't seem to be helping. Have been on flagyl and cipro. I have also had a jpouch redo. Any suggestions or doctors I could see for help?
This sounds very difficult, dr. Has anything helped at all, even for a little while? Have you tried high-dose probiotics (e.g. Visbiome or VSL #3)? Have you tried a very-low-carbohydrate diet? Have you tried any other antibiotics, like rifaximin? The probiotics helped me, and continue to do so, but I didn’t see much benefit when I tried the very-low-carbohydrate diet.
I’m so sorry that you’re going through chronic Pouchitis. I have that also but usually my cocktail of ... Cipro, Lomotil, Imodium and a medical probiotic called Visbiome helps me remain stable. This is prescription strength probiotic.
I stay on a maintenance dose of 500 mg. Of Cipro but when I flare I increase to 1000 then taper back.
Good Luck and feel better!
Janie
