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Reply to "what meds work best?"

I take Entocort for 7 years now to treat my chronic pouchitis / ileitis, usually a dosage of 2x3 mg per day. It reduces inflammation, but does not clear it up.

So far none of the biologics and other recent meds have helped. In the past 6 years I tried Remicade (Infliximab), Entyvio (Vedolizumab), Azathioprine, Stelara (Ustekinumab), Xeljanz (Tofacitinib) and currently a biosimilar to Humira (Adalimumab).

Antibiotics (Cipro & Flagyl) have the best effect for me. During the last 18 months I took them approx. once a month for 5...7 days. (A trial over 4 weeks got me a C.-diff. infection, so I try to keep off them for some weeks after usage.) Even that way my overall health and blood levels have improved over that time.

But also antibiotics do not heal my inflammation. My last scope in December revealed a little inflammation in the pouch and some more in the terminal ileum, although I had taken those antibiotics for ten days before.

Has anyone tried short chain fatty acids for pouchitis? They are a nutrition for the bowels mucus. Sodium butyrate (mainly as supplement, few times as an enema) helped me to wean off Entocort for several weeks some years ago, but the effect vanished after I got an intestinal infection.

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