Anyone prescribed antibiotics for pouchitis?

I received Vanc only 2x and that was for peri-anal abcesses due to severe pouchitis - it was delivered in hospital via IV both times - never was prescribed for oral administration. Otherwise, I took the Cipro-Flagyl meds orally for my pouchitis & cuffitis.

@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?

@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.

@janspons I hope it helps. I didn't have much success with a long term solution to the pouchitis. The anal abscesses let to leakage and that had its own set of problems. I've been a lot healthier with a permanent ileostomy, which wasn't my first choice, of course.

@susanf8 If this doesn't work for the leakage, that may be my next option. It's weird that with all the inflammation, I have no pain, no blood, symptoms and am 95% incontrol of my BM's while awake. I did not like thee ileostomy when it was temporary due to my jpouch construction/healing, but at this point having some control may be a better option. I will wait it out awhile longer while on the antiobiotics, and I am to have another scope in October to see if anything is working. Thanks for your input!

Cipro & Flagyl were mainstays for years. Antibiotics with NOT as broad spectrum/coverage are used. Plus you cannot drink any alcohol while taking Flagyl. It will make you feel crappy- hungover..

@rxjoey I was on a rotation of the 2 for years, one is no sun, the other no alcohol. I would plan accordingly as we live off a lake, and that is what happens in the summer. I have noticed a few of the side effects that I didn't pay attention to before, tendon issues & prickly feeling in my heels, ears ring continuously, etc. Just got word from my docs office, that the reason the pharmacy wouldn't fill is because the script was for the brand name, not the generic. They could have explained that to me 10-12 days ago, instead of just denying the prescription. Sounds like her assistant got things straightened out and hoping to start on it soon.

@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.

@janspons boy, does that sound familiar.

When I had my j-pouch removed I was suddenly not sick. Not that I felt great, I had just had surgery, after all. In my case they also did an oophorectomy and hysterectomy, so it was a lot.

My GI never brought up excising the pouch, but for years we had been trying to get the pouchitis under control, and he kept testing to see if it was CD; it was never conclusive. We had nothing else to try. He was supportive when I said I was ready to have an ileostomy.

I am 64, now, and able to be as active (or as lazy) as I want. The only thing waking me up at night is our cat (not too often).

Whatever you decide to do, Connect (and me) is here to support you.

@nannoaz what is pouchitis and cuffitis?