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janspons avatar

Anyone prescribed antibiotics for pouchitis?

Ostomy & J-Pouch | Last Active: May 26 4:53pm | Replies (22)

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Profile picture for Susan F, Volunteer Mentor @susanf8

@janspons I was prescribed Vancomycin (I think) for anal abscesses. Otherwise I was on cipro and flagyl for 15 years because of chronic pouchitis. I eventually had it excised and a permanent ileostomy. It turned out to be Crohn's and not Ulcerative Colitis as I have since had disease in the small bowel.

I resisted going on a biologic, but after an abdominal abscess, I gave it a try, and I've been in remission for 10 years now.

Are you being followed by a GI? Do you have a CD or UC diagnosis?

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Replies to "@janspons I was prescribed Vancomycin (I think) for anal abscesses. Otherwise I was on cipro and..."

@susanf8 I have crohns in my jpouch, the scope I recently had shows severe inflammation in my pouch. I have a new GI now that is following. I have been on Tremfya since August, but I believe I had the inflammation then as well, but at that time my previous GI moved so didn't really get a plan of care after my other procedures. Since I was on the cipro/flagyl for so long & have been dealing with some of the side effects she wanted to try a different antibiotic. I'm having issues with my pharmacy filling my script, it's been almost 2 weeks since it was called in. I'm anxious to get started on it, I have been dealing with the incontinence issues for over 2 years.

@susanf8 I do have a GI, she is a new one, she is the 3rd one in 4 years. I met with her on a Zoom and met with her in an office visit which didn't really last very long. She put me on vancomycin, 125 mg capsules, 1 capsule twice/day. I was having leakage during the night for a couple years. Since I have been on the vancomycin, I am having leakage, cramping and seem unable to empty my jpouch. I am having cramps in my gut and in my rectal area day & night. I'm not sure if it is antibiotic related, but it sure seems like it. I did not have symptoms like this when I was on a cipro/flagyl rotation but then still had some leakage during the night but was able to control mostly during the daytime. I am seriously considering an ileostomy, I am 65, and am feeling housebound as I can't plan anything currently, I just want to get back some type of control over my body. I am about 4 hours one way from Mayo, so I have not been in touch with my GI yet about these current issues. I believe that I do have a current order to see a colorectal surgeon, but have not met with them at all yet. I had my jpouch done at Mayo in 1996.