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Hi Gina, I’m hanging in there. Have had 3 sinusotomies so far and still have the track on recent imaging. No recurrent infection since last year so the repeat drainage of the tract seems to help. Undecided about having a 4th or throwing in the towel. I hope you don’t have one, but if you do that they can open it up easily. It can often take a few procedures. Happy to answer any questions if they arise. Good luck

They opted not to operate on it yet. (For anyone who cares, here's the original story - I put it in Pouchitis because that's what they originally thought it was: https://www.j-pouch.org/topic/...symptom-what-is-this) The imaging for some reason makes it hard to tell if it is a sinus or a fistula but either way it is a tract. It's about 3 cm to the back of my pouch and goes down to my coccyx ... i think it's like 4.5 cm long? I'm not a radiologist so maybe I'm wrong.

The doctor thinks that the risks of surgery are too high for me right now relative to benefits, and wants me to try some pelvic floor therapy to maybe learn to "poop around the problem" so to speak. If that doesn't work he said we'll talk about other interventions. At first I wasn't happy about this but ultimately I think I am glad they are being conservative about it. My pouch surgeries were not easy and this complication has been there since the beginning. it was just relatively quiet until now. On the upside my mucosa is clear of inflammation and ulcers and other indications of pouchitis so I get a break from antibiotics and I'm just doing Visbiome twice a day now.

Last edited by GinaPouchtastic

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