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my 11 + year old pouch is acting up and I could use some advice. I have chronic pouchitis which has been controlled for over 10 years with 500 mg Cipro once a day and the occasional stint of twice a day when it flares. I also get cuffitis about once or, at the most, twice a year. In the last 4 weeks, I started out with way more gas, then a bit more frequency. I have also leaked twice - something I have maybe done five times in 10 years.  I doubled the Cipro after about a week and a half of that. Things didn't get better. Then the cuff began getting sore and frequency went up even more. I started Canassa suppositories and a general ointment a week ago. The cuff is feeling a lot better, but frequency is still up. Yesterday and today were state testing for my students and I was in a room for 4 hours without a break. I did call yesterday for one, but it is always a bit embarassing and I know it is a hassle for people to come to the room to watch my kids. Today I had to go and just decided to try to hold it. Big mistake. When I finally got to the bathroom, I had to run in and out 4 times in half an hour. On the way home, my rear end was spasming a lot. The whole pouch was spasming, not just the rectum or the cuff. That has calmed down, but I am still spasming a little and getting the message to go to the loo, but not a lot comes out. 

Obviously, I need to not hold it in for that long, although when things are "normal," I can do that for hours sometimes. Does this sound like cuffitis? Any suggestions?

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I wish I could tell you what's going on - could be many things - and it could pass and just heal and get better.  Boy, have I been there - taught school for 11 years and was a school counselor for 14.  Nothing like being stuck in that room and needing to go - I look back and don't really know how I did it all those years.  I had the pouch the entire time.  Hang in there - maybe someone else has better info. - I just don't know - but I certainly have been through all the symptoms you've had with pouch for 30 years.  The spasms, etc. are awful - but for me, I've always gotten through it and things have calmed down again.  I finally quit working when it got to be too much...just made the choice that I wanted to stay home - and to heck with having much less money/income.  It was 26 years of the job - and I decided - that was enough of that.  Pouch gives me more trouble as I age -but it's still worth keeping as long as I can.  I really hope you feel much better soon!

AW

KTA: I have recently (last week) had the same sx as you -- I've had my pouch for 11 years and have mostly done really well. I weaned off rifaximin about 3 years ago. But over the past week I've had a flare I think. I don't even have a regular GI anymore.

I just returned from Urgent Care and got mesalamine suppositories. Cipro makes me a bit crazy. I have tons of rifaximin left (expired but probably still good). 

 

Good luck! Donna

DB

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