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Hi all,

I've got a question I'm hoping someone can shed some light on. I'm 14 months post J-pouch, my pouch was created in only 2 steps, first colon removed and ostomy created, then ostomy takedown, pouch created and connected in same surgery. I had lots of problems for the first 6 months with urgency and pain and then things started to settle down and life was good.

About 4 months ago I started to get a new sharp stabbing pain, in the lower left side of the abdomen, by my hip, but the pain is deep inside my body and kind of snags around, it's hard to pinpoint exactly where it is. I mentioned it to my surgeon on a follow up visit and he said that's where the end of my j-pouch is and it's probably happening when it's full. So I thought nothing of it as the pain was not too bad at that point and not constant.

About 1 month ago this changed, I'm getting this pain about 10-15 times a day, every time there is anything in my pouch it starts, when it hits I can't breathe, talk or move until it passes. The pain comes in waves, and it doesn't stop until I go to the bathroom. It's beginning to feel like colitis again, pain-poop-relief, pain-poop-relief. This cycle is defeating me.

It seems to come whether my pouch is full or just a bit is in there, gas makes it worse too.

I'm going back to see my surgeon again next week but I'm racking my brain trying to think of what this could be. Adhesion? Scar Tissue? Fistula? Abscess? Pouchitis?

I have not had pouchitis since I've had the pouch, and the pain is not constant it comes and goes (thank God) but it's still there, and it's excruciating when it is. I'm starting to get really frustrated. I've never had an abscess or fistula but I have torn an adhesion and that hurts like hell but this pain is different.

Also, I'm not bleeding (much) so I don't know if that makes a difference. I always pass blood if I've eaten something rough like a salad, but no more than usual.

Has anyone else had a similar experience?

Replies sorted oldest to newest

This is sounding like an adhesion to me, or perhaps a structural problem, and the fact that his pain is escalating means it needs to be remedied.

So, have you been scoped to rule out pouch strctures, cuffitis, pouchitis? A CT scan may be in order to see if there are any fluid collections, thickened bowel wall, etc. to diagnose structural defects you may need a defogram, to see if there is any twisting, proapse, or kinking of the pouch or adjacent ileum.

Your instincts are right that this is not normal. Even your bleeding isn't normal, and is likely cuffitis.

Jan Smiler
Jan Dollar
As I sit here with a slight pain to my left side and treating cuffitis againm I's thinking the pain plus the blood seems to me like cuffitis. Some with cuffitis have no bleeding and some do. I think the roughage from the salad just stirs it up so the cuffitis more so it bleeds. It's been long enough you shouldn't be passing blood at all Confused

I agree with Jan you need a scope first and not a CTscan. Those have radiation and the scope doesn't. I had a small bowel study that you need to drink barium (yuck) to check for twisted or strictures in my system. It has radiation too but even I could see there was nothing wrong. I looked while the radiologist performed it and saw the x-ray he took. It was interesting seeing how my small intestines were in my body post surgery too. I hate barium but you don't need to drink as much as when you have a colon. My j-pouch wasn't leaking or anything that he could see either.

I hope it isn't cuffitis but your pain cycle sounds like mine. If you get scoped make sure it is a flexible one.
TE Marie
That's a good question. In my experience, think healthy to avoid pouchitis or and pouch problems. Starchy foods are usually safe. Stay away from nuts or anything that may cause gas. I'm a little over a year from my re-surgery for the j-pouch and that's what works. Eat like a monk, work out.. etc. It's like work. It's not fun at the time but the benefits are obvious.
JS
Have you seen a GI since surgery? I'm asking as my surgeon totally missed that I had a c-diff infection when he did his quickie scope and took no biopsies. He gave me a prescription for 14 days of Anucort suppositories because he saw a little bleeding at my cuff. I told him I'd had a toilet full of just blood a few days before.

Long story short, 2 GI's, flexable scopes and biopsies I had a c-diff infection along with my acute and chronic cuffitis. Plus I have IPS.

IMHO GI's are better than surgeons post surgery and recovery.
TE Marie

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