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Hello,

I've had my pouch for ~15 years. Never been diagnosed with a stricture or pouchitis during that time. I've always had high frequency but have no problem holding it for long periods of time if need be, although uncomfortable. Anyway, last Friday afternoon I started have urgency like that I needed to go to the bathroom straight away. I was at work and ended up going about three more times in the next two hours. By the time I left work I felt very ill. Tired, weak and a fever very much felt like flu. I let my supervisor know I would not be in the next day. I think I started noticing a feeling not emptying maybe late that evening but can't remember exactly when I noticed that feeling. I slept for 14 hours that night then took a five hour nap Saturday followed by another 12 hour sleep. Finally by Monday afternoon I felt much better. I still am not emptying fully. Also when I get the feeling it hurts, like a super bad gas pain. I'll be calling the clinic and probably go in later today but thought I'd ask here for any thoughts or similar experiences.

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The diagnosis is pouchitis. I am so thankful this is the first bout, that I know of, in 15 years. I could not live like this. Okay so, I'm taking Cipro for ten days. I asked the doc if I didn't do anything what would happen, he said you'd keep feeling like this. So does pouchitis not go away on it's own?

I think occasional bouts of pouchitis may be the norm, though people on support forums average more frequent issues by far. Folks who don't treat it can have a very, very long bout, though, at least until they get it treated. If the Cipro works as well for you as for me when I first took it, you'll feel much better surprisingly soon.

It depends a lot on the type of IBD you had at the time of surgery. If you had pancolitis, extraintestinal symptoms, backwash ileitis, undiagnosed Crohn's, and others I can't remember, you are at a higher risk of chronic pouchitis at some point. Everyone else is still at risk for the occasional acute case from time to time, and that risk goes up as the pouch ages.

If you have a pouch for reasons other than IBD, you are on the lowest end of the pouchitis risk spectrum.

Jan

Last edited by Jan Dollar

I have had my pouch for 6 years also.  I always get bouts of pouchitis.  I would take antibiotics every day switching from one week  cipro to one week  flagyl.  For about the last year I would take cipro for l week and stay off for as long as I could.  When the pouchitis acts up I start taking flagyl for a week and don't take them again until I feel symptoms of pouchitis than I rotate to cipro. That is how I rotate the antibiotics now I don't take them every week like I did.   I never stopped taking the VSL3  along with my vitamins I take that every morning.  About once a year I go in for a stretching.   When pouchitis acts up I start at night with antibiotics.  I also am careful of what I eat.  Some times I don't know what starts the symptoms of pouchitis.  I can eat the same thing and sometimes it bothers me and other times it doesn't.  Stress may have a lot to do with symptoms and I am always stressed about something.   It took me 5 years to get to where I am today.  I can't really complain to much because I am better than I was 5 years ago.   I may not be able to eat what every normal person eats like most of us but I can deal with that.  I take 1 lomotil every day about  2 hours after I am up that seems to help.  I think that I am so used to taking it that when I don't take it I start to get symptoms of pain like the starting of pouchitis.  It must be the drug in it.     I  read every ones post and it puts everything into reality for me.  So many of you struggle that we all understand what you are going thru. Like I said many times, If it weren't for everyone here I don't know how I could ever get thru all the struggles that one have.  So everyone just hang in there and hopefully this to shall pass.  Everyone on this post brings hope and plenty of info that that  the Drs. should be telling us,  that is why this site is such a support system for many of us I know it is for me.   Thank you and God Bless  to all.

Grace

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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