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Hi All,

Hoping to benefit from the collective experience on this forum. I'm looking for recommendations for GI and surgical evaluations (at the same institution or same city) for a problematic pouch. To hopefully give you an idea of what I'm looking at/for I'll provide some details on the pouch, I'm sorry in advance for the length.

I had lots of complications with abscesses, etc., during the 3 stages of surgery. I've had a sinus tract and pouch emptying difficulties since day 1 from takedown which was a little over a year ago. My CRS is wonderful but unable to deal with these complications other than to excise the pouch and go to permanent ileostomy, which I'm strongly considering. Before I do this, however, I would like to get one more opinion. I've seen Bo Shen at NYP for 2 sinusotomies both of which were only able to open up a couple of centimeters of a deep sinus tract. He also did some banding from small prolapse during the first procedure but not the second.  A few months ago, I was diagnosed and treated for osteomyelitis in my sacrum due to the sinus tract which abuts it. Still have pain, night sweats, low weight (all the usual symptoms of sinus tract and maybe chronic osteo) and no one at my home institution thinks the osteomyelitis can be fully addressed unless the sinus tract is. Shen and his clinic have not replied to messages from me and my CRS regarding whether another sinusotomy is warranted. I've never heard back from anyone following my last sinusotomy. When I called I was told to make an appointment. I live >7 hours away and it is very difficult to take time off work. I would do so, however, if he thought another sinusotomy would help but I'm not getting that sense from his lack of response. Last time he said the tract is very deep and left it at that. Also, I recognize he is likely very busy and may not want to deal with anything remotely. I cannot, however, go to NYC for a 20 min follow-up to hear that another procedure will not work or conversely that I need to come back down for it at another time. Unfortunately, I think I've exhausted NYP as a resource. I should say, I've reached out around 3 times via myChart and also called a couple of times. My CRS has sent him at least a couple of emails. Maybe I'm not pestering them enough? It's just radio silence.

The difficulty emptying has been attributed to the sinus, prolapse and "poor pouch function." I've had defecography x 2 ( at 2 institutions) which show a complete inability to empty that thick contrast material but normal relaxation of RP muscle and no paroxysmal anal contraction. I do have a high resting tone of the pelvic floor for which I've done PT and have been deemed able to relax. No explanation from anyone about what is happening. My reproductive organs have shifted through all of this and per the gyn specialist, my cervix is firmly lodged against the anterior wall of the pouch. But she can't say if this is contributing as I'm her only pouch patient. I now have to splint my cervix every time I empty (will not go into details). I'm wondering if MR defecography could shed some light on what's happening functionally. It's not available at my hospital but if anyone had good success with it would love to hear where and what your experience was.

I've never regained the health I had prior to colectomy nor even with the bag between stage 2 and 3. I'm worn out mentally and physically. I think I'm ok with the permanent bag but a recent injury that threatened my dexterity gave me pause. Neither the crappy pouch I have now nor an ostomy would be very manageable if I had reduced use of my hands. It's worrisome.

Thank you for reading. I'd greatly appreciated some recommendations on a good center where I can fully explore my surgical and non-surgical options (if they even exist). I'm willing to travel, there just needs to be a clear reason for doing so.

Thanks you in advance for any and all help.

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You’re in a difficult position - I’m sorry you’re going through this. You might consider making an appointment to consult with Dr. Remzi at NYU, perhaps scheduling a visit with Shen on the same trip (if that would offer some closure). Shen may just have incompetent support staff. Remzi and Shen used to work together at Cleveland Clinic. Remzi is the CRS I would go to if I were contemplating repair, replacement, or removal of my J-pouch. If Remzi can’t fix it then it’s probably not fixable surgically.

Thank you, Scott. The Remzi idea is a good one. He seems to be well respected on this forum. And maybe I’ll give Shen another go (as long as I’m in NYC, might as well) though I’m a bit disillusioned with him/NYP. I guess Cleveland Clinic and Mayo are options too but I’m completely unfamiliar with them. Closer than the West coast however and may be worth the reassurance.

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