My name is Stephanie, I had UC for 7 years before having my J Pouch surgeries 4 years ago. 1 year ago I had a pouch pexy performed at the Mayo Clinic because the pouch itself was actually twisting and flopping on itself causing pseudo obstructions, tremendous pain, risk of bowel necrosis, etc. Diagnosing this problem took 7 months and 4 separate visits to the Mayo Clinic. They did an open procedure "anchoring" down my pouch and cauterizing around it to hopefully create scar tissue to hold it in place. I am 10 months post op and now I'm feeling like I might have a partial obstruction higher up in my intestines. Eating solid foods causes extreme pain and vomiting, but liquids are ok, so I'm back to surviving on a liquid diet. I know from my past experience that the scheduled tests and images, mri enterographys, pouchogram, pouchoscopy, ct scans, xrays came back inconclusive since I would always have to fast prior to them and therefore wasn't symptomatic. Last time the only helpful images for a diagnosis came from going to the ER while symptomatic and getting images done. My GI is recommending an MRI Enterograph again, will this be helpful if it is a partial obstruction? Or should I just eat a big solid meal, wait for the pain and head to the ER? If so, which test is best to request for confirming or ruling out an obstruction. Is one more accurate for detecting strictures vs links or twists? Just tired of inconclusive tests and really want an answer so any advice is greatly appreciated. Thanks.
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I think you already know your diagnosis, so further testing won’t really solve a problem. Hopefully this will resolve on its own. You probably developed more adhesions during your pouch pexy, and most likely that’s caused a temporary narrowing. You haven’t described any reason to expect a stricture in your small bowel, so that’s quite unlikely if you don’t have Crohn’s. This is a very aggravating problem to have, and the best thing, if you can manage it, is patience. These usually clear up with in a couple of days. Good luck!
It's been going on for 6 days already. Maybe I don't understand what can cause a stricture, I thought it could be from adhesions or scar tissue. I didn't know it had anything to do with Chrons. Just to clarify, you think there is a kink or twist somewhere in my small intestine that is hung up on scar tissue outside the intestine but eventually will move around and straighten back out?
I don't mean to sound naive I'm just trying to visualize what's going on.
Stephanie, you are exactly right about what I’m thinking. A stricture is a different thing, generally a thickening or narrowing of the bowel wall itself without the involvement of external scar tissue.
Thank you for your time and feedback, I definitely understand the difference now and believe you are correct.
Hi Stephanie,
sorry to hear of your situation. I’m curious what symptoms you had that led them to finding your flip floppy pouch, and how they diagnosed it?
As for partial obstructions, I’ve had lots and all the tests you listed. To my understanding, ct and mri enterography tests rule out other things like chrons, strictures, deformations etc. The actual obstruction never showed up on these, but has showed up on ct scans when I’m in the er symptomatic. I think they need to “ catch it in action” so to speak and it seems that is quite difficult.
hope that helps-we had another thread going here on obstructions from adhesions that might be useful to you. I think it was called: obstructions, possibly from adhesions
(sorry don’t know how to link to it!)
The flipping of my pouch was finally diagnosed with a CT scan in the ER when I went in with extreme pain. They saw a swirling pattern at the site of my anastomisis and kept me for close monitoring to make sure that it didn't become necrotic. They gave me enemas and pain meds as the pain of an organ twisting and flopping on itself is a whole new kind of pain. Mayo clinic also performed a test where they filled my pouch with some sort of glowing fluid, had me lay down and turned me in different positions and took images to see how the weight of the fluid in the pouch caused the pouch to react. They were able to see it flip flopping. They also noted that the pouch was rather large for its age, and that it has stretched quite a bit which may have been the underlining problem. This led them to the decision to anchor down the pouch. They felt it urgent since continuing flopping could cause necrosis.
Are you better now???