Anyone prescribed antibiotics for pouchitis?

Posted by janspons @janspons, Apr 25 11:00am

I have been prescribed Vancomycin for my severe pouchitis. I don't see much mentioned about it like Cipro or Flagyl. Wondering about any issues with it? I was on Cipro, Flagyl & azathioprine for as long as I can remember (probably 15 years or so) needless to say I have quite a few of the side affects from that, so I'm just curious on this one. At this point I just want something to get it under control as I have had nocturnal incontinence for about 2-1/2 years. Thanks for any input.

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scpam | @scpam | May 16 7:15am

I have had my continent ileostomy for 38 years… not a j pouch but lesser known BCIR. I use to have pouchitis regularly but for some reason seldom have it now. As I have gotten older, antibiotics cause me so much gut upset and pain. I know you are supposed to take the entire prescription but I found that a few days does the trick. There is a probiotic I have read about for years that is supposed to help with pouchitis. The studies are impressive and I am including a description. It is expensive. I’d be curious to see if anyone has used it.

“Preventing Relapse: Clinical trials have shown that taking VSL#3 daily is highly effective at maintaining antibiotic-induced remission in patients with chronic or recurrent pouchitis. One landmark study found that 85% of patients taking VSL#3 remained in remission after one year, compared to only 6% of patients taking a placebo.”

nannoaz | @nannoaz | May 16 9:54am

In reply to @catbaloo76 "@nannoaz what is pouchitis and cuffitis?" + (show)

@catbaloo76
Cuffitis is inflammation in the rectal cuff which as explained to me is the small segment of rectal tissue left after a colectomy and ileal pouch-anal anastomosis (IPAA)

Pouchitis is inflammation in the ileal pouch (j-pouch) itself.

janspons | @janspons | May 16 11:38am

In reply to @susanf8 "@janspons boy, does that sound familiar. When I had my j-pouch removed I was suddenly not..." + (show)

@susanf8 Sorry if TMI, but last night laying in bed I woke up to some cramping and started massaging my belly and on my right side, I felt something that resembled a soft golf ball, maybe a little smaller than that. I rubbed & pushed on it a bit and it seemed to disappear, so I got up to go to the BR, and I sat for 20 minutes bending & rocking in every direction and finally was able to pass more stool than I have in the last 2-3 days combined. I was able to go back to bed with no stomach pain or cramping. My guess is I had a blockage that had lasted 4-5 days? I have been very fortunate as I have had my pouch for 30 years and I don't remember having anything similar to this, my bm's have always been fairly loose. I was to the point I could not push to try to empty as that alone was causing pain. I have eaten very little in the past few days, but today I feel better than I have in about a week or so. Not sure if I maybe was taking too much fiber between taking loperamide, physllium capsules or husk which I have started taking recently, before I was using Metamucil, which I have taken for years and wanted to try something new. I appreciate all the feedback , and the ileostomy is still being considered if the incontinence can't get under control, I don't want to end up scared to go out & about due to the leakage. Hopefully now at least my days can go back to being leak free, and I will continue to deal with the night stuff for now. I do appreciate the support and place to vent or discuss things that others don't understand. Thank you all for your comments. Have a great weekend.

catbaloo76 | @catbaloo76 | May 16 2:43pm

In reply to @nannoaz "@catbaloo76 Cuffitis is inflammation in the rectal cuff which as explained to me is the small..." + (show)

@nannoaz is that after a reversal Of a colostomy?

nannoaz | @nannoaz | May 16 3:22pm

In reply to @catbaloo76 "@nannoaz is that after a reversal Of a colostomy?" + (show)

@catbaloo76
no - As result of Crohn’s disease pouch failed due to disease process - final result was 3 years post surgery to remove colon and create Jpouch at Cleveland Clinic I elected to have total jpouch takedown and have a permanent ileostomy.

Susan F, Volunteer Mentor | @susanf8 | May 16 11:54pm

In reply to @janspons "@susanf8 Sorry if TMI, but last night laying in bed I woke up to some cramping..." + (show)

@janspons I'm glad to hear things are better. I hope they continue to!

Let us know how things are going, okay?

catbaloo76 | @catbaloo76 | May 17 5:54am

In reply to @nannoaz "@catbaloo76 no - As result of Crohn’s disease pouch failed due to disease process - final..." + (show)

@nannoaz I decided to have a permanent colostomy ,I had a bad surgery where I almost died my surgeon wasn't sure at the time if I could have a reversal but after a colonoscopy he told me I could have a reversal but he told me he would have to open me up again and wasn't sure if he could do that because of scare tissue and he could he would have maybe let my colotomy heal and have ileostomy for 4 months go back a make another cut to push my intestine back in it was to much for me so will be with my buddy for as long as I live. Well thanks for explaining to me about what your going through have a great day

Susan F, Volunteer Mentor | @susanf8 | May 25 2:09pm

In reply to @janspons "@susanf8 Sorry if TMI, but last night laying in bed I woke up to some cramping..." + (show)

@janspons just checking in to see how things are going. Are you still having nocturnal leakage?

janspons | @janspons | May 25 8:00pm

In reply to @susanf8 "@janspons just checking in to see how things are going. Are you still having nocturnal leakage?" + (show)

@susanf8 ~ Unfortunately yes, my GI added vancomycin to my tremfya & I have been on the antibiotics for about 20 days, and haven't noticed much yet but got my fingers crossed since it looked like I had severe inflammation in my pouch/rectal area, I'm hoping that it just takes awhile.