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Hi there
I am seeking some advice on what might be the cause of my difficult pouch. I have had the pouch for about 2.5 years and have never really got to a comfortable place. The main problem I have is with an unsettled pouch, mostly in the afternoons. I have periods where it is very uncomfortable and I need to go a lot over a short period of time until it eventually settles early evening. I get pain around the anus on defacation. Sometimes that is worse than others. That is sometimes it seems to be more caustic than others and I don't know why?When I am on cipro it is a lot more stable. I have tried dietry changes (fodmap) but that doesn't seem to do much. I have been scoped recently and it all looks perfectly normal, so I'm bewildered by my symptoms. I take 2 loperamide 3 times a day, metamucil twice a day, and a probiotic capsule 3 times a day.

Currently trying Pentasa to see if working on possible cuff infamation helps. If anyone has any ideas I'd love to hear them because I am stumped. Just want to live like everyone else and not have to worry about what tomorrow is going to be like. Thanks.

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Sounds like you have a chronic anal fissure or anal irritation. Also, IPS (irritable pouch syndrome) is pretty common. It is treated essentially the same as IBS. It is functional disorder, not a physical problem. Although, recent articles indicate there may be a relationship between bacterial overgrowth and IBS. This would support the fact that Cipro seems to help calm your symptoms. Both IPS and bacterial overgrowth would not have any physical evidence during scoping. Have you checked out the article in the Pouchitis forum "sticky" post?

Jan Smiler
Jan Dollar
I don't know if this will really help but... I have had IPS for 10 years. The pathologists are baffled by the amount of bacterial overgrowth that goes down in my pouch. Cipro is the only pharmaceutical that calms it down. But I have this horrible fear of becoming immune to it. So I only take it when I can hardly stand the pain any longer. For me, I know stress is a huge trigger. And unfortunately I have a extremely stressful job that I'm beginning to hate. Anyways I try to keep my stress levels down and I seem to be able to maintain a manageable level of pain. But this disease and the situations that go with it is different for everyone.
S

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