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So I have posted before and this time I am begging for help.  Sorry for the long post.  I thought I had cuffitis and I get a scope every year.  The doctor said my pouch looks amazing and no cuffitis.  Matter of fact the cuff looked great also.  So my problem is, I have the urge to push and for over a year every time I have a bowel movement I am in pain afterwards. So much pain I have to take a pain pill.  The pain kills my back and I keep having to have the urge to poo and when I am in the bathroom I just shake and cry from the pain.  I finally agreed to a defecography and Anorectal Manometry.  And I am dreading this in the worse way.  I am worried about the pain of having it done.  But I am going to do it.  I am so sick of living this way.  This started in early 2018.  I do know what pouchitis is and taking antibiotics doesn’t help it either   I have been on Canasa suppositories with no help and Anusol suppository and that help some.  But I can’t live on those everyday.   I have googled everything possible and I can’t find anything.  Also I have no fissure either.  It feels like it is right inside my anus.  If it wasn’t for that I’d be doing great.  It also doesn’t feel like spasms either and most of the time I have liquid diarrhea.  

Any help, suggestions would be great.  I am hating this jpouch with a passion.  And I dread the test coming up.

Thank you for reading this long message.  

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I'm sorry you are going through what your going through.

I had my pouch for two years.  It was healthy. Had no infections. Fissures. Nothing. But going was so painful I was pulling my hair out in pain and with all the Dr appointments to figure out what was going on and coming up blank after all that I had it removed.

I know that is not what you want to hear. And trust me even when I was being rolled in to have it removed I still didn't want to do it. But I did. I had to.

Like you I couldn't live like it anymore. It was like someone had a lit match there all the time. I had the urge to go 24/7.  I couldn't sleep. And I was working 40 hours a week. It was wearing me down to nothing.

I don't know your age . But I was 60 when I had it done. Had I been younger I may have searched longer for the problem. But for me getting an end ileo has been the best decision I made through the whole ordeal.  And it's been or was a decades long ordeal.

It's not the answer for everyone. Nobody wants it. But it works. And it got rid of all my problems overnight. I knew it was the right decision when I woke in my room after surgery. My whole abdomen was relaxed and no burn you know where. I still have my rear. She didn't take it.

I've had it for almost 6 years now. It feels like it has been a part of me my whole life. It becomes part of you.

Like I said. No one with problems with their pouch wants to hear end ileo. I didn't say permanent. I can get another pouch. She left everything intact to do so. But I'm not ever gonna go through that again.

I'm sure others will chime in.

As I was going through it I couldn't find any answers to get it to work. Yes. I tried most of what you mentioned. Plus other meds. Different diets. Nothing worked.

Keep us up to date on what you do.


@grandmaof1, you've described a very scary situation. I can say that the barium defecogram is nothing to dread. I had it and the manometry very recently at Columbia and the people administering it were very kind and considerate.   In my case a mucosal prolapse of up to 80% was made worse with straining. I'm waiting for a banding procedure, taking antibiotics, and doing much better by relaxing and not straining. Based on how things feel today I am optimistic that the pouch will work for me. But since take-down 6 months ago I've seriously considered an ostomy or K-pouch. What I've taken away most from this forum is that that circumstances change, outcomes vary quite a lot, and what is acceptable is unique to each of us.   I hope results of the tests will bring you answers and a clear path forward.

Grandma, please google “levator ani syndrome” and see if the symptoms sound familiar. It describes a very painful anal muscle syndrome. If it describes your pain, tell the name to your doctor so they know where to start to help. I had extremely painful spasms like this in the early days after takedown. Luckily, the symptoms didn’t last long, a few months, I think. The spasms would hit like a thunderbolt and usually after a movement, but it would also happen anytime day or night. It was terrifying in it’s suddenness and extreme pain. Please google it.

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