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.