It seems that whenever I get pouchitis, I have pain in my lower left back, and a little pain and pulling sensation at the takedown site/stoma site. It's been 22 years with the pouch. I can see where the pouch might get inflamed and push on nerves in the back, but it's still weird to me that the takedown site has pain. Does the inflamation reach all the way up there? It seems to go away when I take antibiotics. Sometimes the pouchitis makes me feel like I have a blockage there, which makes sense given that there is probably scar tissue there. Anyone get pain in the takedown site?
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I cannot comment on the back because I do not know for sure
Scar tissue pain can last years later unfortunately, here is an article
I recently had an abdominal ultrasound and the tech showed me on my abdomen where my pouch starts and I was surprised at how high my pouch starts, Right up and to the left of my belly button. So I think that pouchitis pain can be quite high, near the takedown site.
That's really helpful. I'd be curious to see where my connections are in relation to where I feel things in my abdomen. I've had some rough patches, but overall good for a long a time. I'm grateful the antibiotics work.
After my 2nd takedown (first failed because of an undetected leak), I got pouchitis right away. Each bout was always preceded by terrible pain in my tailbone area. My GI said I had a small sinus tract but that didn’t go anywhere, but it was located in the back of the pouch. After a couple of years we did a CT Scan and they found a pocket of air that was connected to the sinus tract. I went to Cleveland Clinic 3 years ago, where a great doctor did a MRI, saw where this abscess was pushing on the jpouch and was able to remove it. No more tailbone pain after that. Although I still have chronic pouchitis it is manageable now for me with Cipro and Flagyl. It might be worth getting a CT Scan done.