Just at a loss and can’t take this pain anymore

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.

Richard.

@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.

I can't know the cause of your pain. In my case, my jpouch twisted and my rectal cuff was too long. I had it redone. Going for takedown this week. If it doesn't work, I'll go with a permanent stoma.