I have had chronic active pouchitis for over 2 years now. How worried should i be?
Im on Humria once a week, 500mg of Cipro a day, waiting to see if i have an infection of another fistula so i can add MP-6.
Anyone else have this chronic active pouchitis?
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Mine is chronic but low simmering. I take antibiotics on occasion. Are your symptoms controlled with the meds?
Not really, that's why want to add mp-6, they dont want me on cipro as it isn't working well. I have continuous inflammation too that they want gone as they are worried about what it will lead too
I have more problems around the rectum but I take xtampsa 2 x a day and fill in with oxy as needed. I will be scheduled for endo and colonoscopy and am worried about results as I will not and cannot have more surgery. my cancer was 32 years ago
I’m sorry to hear this. Both my GI and surgeon never worry about my chronic low lying inflammation and I have also had numerous issues since my surgeries. If your quality of life is severely disrupted from the chronic pouchitis then I understand their suggesting surgery. I completely understand the reluctance for more surgery. I’ve been fighting it as well due to a chronic stricture. Have you tried xifaxim to get off the cipro?. It can help too. Also maybe a gluten free diet? Gluten, caffeine, chocolate, fried food, alcohol and sugar aggravate my pouchitis.
Mine is chronic and used to be moderate, but for the last couple years it has been severe. Antibiotics didn't help, nor did Entocort. I'm currently on Humira and Prednisone. The Prednisone's not helping much but the GI isn't comfortable stopping it yet.
If the Humira works (just started it), I will hopefully ditch the Prednisone. Entyvio was another treatment option but ended up lower on the list because I also have joint and skin inflammation.
Chronic pouchitis is hell. I can be fine one day and failing miserably thenext when it starts. I always have low level pouchitis on all biopsies and ulceration on the suture lines in pouch.
