I have problems with pouchitis: Any long-term solution?

Posted by borna02 @borna02, Jul 1, 2022

Hello, I have problems with pouchitis. I had my stoma closed in August last year. Since then, the inflammation of the pouch has not subsided. The number of stools decreases for a short time when I drink antibiotics, but after stopping taking antibiotics I have more than 10 stools again. I took medazol, cyprinol, rexocef, novocef, ciproflaxocin as antibiotics. Does anyone have a long-term solution that doesn't require me to take antibiotics all the time. Thank you in advance

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Colleen Young, Connect Director | @colleenyoung | Jul 1, 2022

Welcome @borna02. I added your question to the Ostomy support group too (https://connect.mayoclinic.org/group/ostomy/).

It sounds like you're having a struggle with bowel movements since having your stoma closed almost a year ago. And, of course, long term antibiotics hardly seems like a permanent solution. I wonder if @dval or @martinkda may have some experiences to share with you.

Mayo Clinic currently has 3 clinical trials open looking for treatment solutions:
https://www.mayo.edu/research/clinical-trials/search-results?studySiteStatusesGrouped=Open/Status%20Unknown&pocId=CON-20306105&_ga=2.239710016.270384143.1655825164-1419036637.1645131510&_gac=1.150072132.1654865185.CjwKCAjw14uVBhBEEiwAaufYxzSX9eBgIznhbFkIMFapSEXhrjQx462vUvCuft8CstsDub4YSkigZxoC-VEQAvD_BwE
Borma, do you also experience pain or is your main concern loose and frequent stools?

borna02 | @borna02 | Jul 2, 2022

In reply to @colleenyoung "Welcome @borna02. I added your question to the Ostomy support group too (https://connect.mayoclinic.org/group/ostomy/). It sounds like..." + (show)

Fortunately, there is no pain and no blood in the stool. My biggest problem is loose and frequent stools and weight loss during periods when I have more than 10 stools.

susan_f | @susanbfoster | Oct 31, 2022

Hi - I had my j-pouch in 1987 and had chronic pouchitis. I participated in several Mayo studies to try and find a solution, but after 15 year of being on antibiotics, and having fistulas, fissures, and abscesses in addition to the pouchitis, I opted for a permanent ileostomy for quality of life reasons. That was 2002.

In 2015 I was diagnosed with Crohn's Disease because I had inflammatory disease in the stoma and ileum behind the stoma. All of the testing for CD had been inconclusive previously, but in retrospect, I'm sure that was what was causing my issues.

I've had my permanent ileostomy for 20 years now, and while it wasn't my first choice, it gave me my life back. I'm active and heathy and my CD is under control.