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I am a 30M who’s had my jpouch since 25. I had chronic pouchitis shortly since takedown, controlled by antibiotics, and despite this, have been able to live a relatively good life and return to my passion of weight lifting.

Unfortunately, over the last year, my pouchitis has been difficult to control and I am back on steroids and biologics, with poor effect. I suspect a mechanical problem, as my worst symptom is severe bloating and gas. I am now considering j-pouch excision, and was wondering if anyone here has had 1) an excision success story they’d like to share? and 2) has anyone been able to return to exercise like weight lifting with not just the ostomy, but the healed backside as well?

Thanks so much! In prior years of illness I was grateful for this forum, and I am grateful for the good years I had with my Jpouch, which allowed me to do way more than I imagined with UC prior.

Tags: excision, j-pouch excision, Exercise, lifting, ostomy

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Have you already searched the forum for SIBO (small intestine's bacterial overgrowth)? This can cause lots of gas. It is treated with other antibiotics than Cipro and Flagyl (Xifaxin, Augmentin or doxycycline were mentioned here, but I have no own experience with SIBO).

Did you have a pouchoscopy to check for inflammation and mechanical problems? I would do that before considering an excision.

SteveG

Thanks SteveG, yes, I have already explored SIBO with my GI. I’ve been on all those antibiotics for it and it seems the symptoms recur either whenever they are stopped, or when the antibiotics wear off while still taking them, despite cycling them. I don’t know if there is some sort of optimal cycling schedule for antibiotics, but I have not been able to come upon one in my own experience of taking them.

I’ve also had pouchoscopies which have found inflammation consistent with pouchitis (if the scope is done when I’m off antibiotics) and that have found cuffitis even when I’m on antibiotics. No mechanical problems found on pouchoscopy, but an MRI has shown dilated pouch with cuffitis, and residual “mesorectum”. I am not sure how the latter may contribute to chronic pouchitis.

T
Last edited by Teddy92

I'm taking Cipro and Flagyl for about 3 years now for chronic pouchitis. I reduced stepwise to half a tablet each (250 / 200 mg). Recently I found that taking them every other day is sufficient and perhaps even a little better.

So a small microbioma seems to be fitting best for me, too much antibiotics over a long time may produce resistancies. I never needed to cycle antibiotics. When I had a c. diff. infection years ago while on a full dose of Cipro and Flagyl for 4 weeks, it was treated with vancomycine for 10 or 14 days.

Have you tried Entocort instead of systemic steroids? It has less side effects.

There were also posts about pouch excision and barbie butt in the forum, just use the forum search. Chances are good that you get rid of inflammation and the need to take meds. Of course a stoma can have its own complications, but many people are quite happy with it once they can accept having that external appliance.

Perhaps other people here have more ideas about what you could do in your current situation.

SteveG

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