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Hey everyone!

I'm Ian, 28M, and I'm 4 years into my Jpouch and things have been going incredibly well. However, about 6 months ago I started experiencing symptoms similar to pouchitis (the smell, constipation and diarrhea, strong pain across the whole pelvis anytime there was anything in the pouch, pressure, and leakage, and nearly impossible to empty my pouch) but after a scope revealed no scar tissue or pouchitis at all my GI was stumped. Those symptoms continued for months and we couldn't figure out what was the cause.

Fast forward to now and the symptoms have somewhat changed. Now anytime there is anything in the pouch I'll experience these dull but strong throbbing pains across the whole pelvis but focused on the anastomosis for about 20-30 seconds when it's ready to come out. If I don't run to the bathroom right then it'll leak because of those pains. The pains hit me daily starting in the evening, but sometimes during the day too. Emptying the pouch if the consistency isn't close to liquid hurts the anastomosis also. If it's much more solid, then it's a whole night of soreness and pain- a total 180 from my whole pouch experience being very easy to empty my pouch. In the last 6 months I've had only three days that felt like the old days. Just weirdness all around.

Has anyone experienced anything similar to this?

I'm at the point now where I've tried GI, and dietician with no solutions. Now I'm working with a Pelvic Floor PT to see if that's the cause. To the best of my research, it might be nothing more than an incredibly weak pelvic floor that just finally gave out but I can't really find anything similar online.

Would love any and all spitballing on what it might be, could be or any experiences similar! TYIA

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Maybe the pain I experience was a little different than yours. Mine was rather being a burning sensation in the anus, sometimes a sharp, stapping pain. Even when I felt a slight pressure because of a little gas, I had to run to have an immediate BM.

So I think what Scott mentioned does make sense to me. I've had a pouchoscopy lately which didn't reveal any sign of inflammation macroscopically. The results of the biopsies taken during the examination were showing an 'erosive' pouchitis (what ever that means). I've been treated with a 14-day course of metronidazole. This helped getting rid of the pain I was feeling before.


Def sounds like pouchitis or even cuffitis (sp?)  After a while, you will be so used to the symptoms, and if you have a good doctor, you should just be able to call them and say, hey I have pouchitis again, and they'll give you antibiotics.  I would def call them and tell them you want to try cipro or flagyl (sp?) if you can tolerate that.  It's your body!!  I've had my pouch 25 years, and have had many bouts of pouchitis.  Sometimes it is bad and just will not go away by itself.  Other times it goes away after a few weeks.  Just because a scope cannot see it, doesn't mean it is not there.   Good luck.  I know how scary and frustrating pain in the tummy is. 

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