Final (I hope) update to this thread.
They are taking a conservative approach. I drew a picture of the problem based on the doctors sketch for me.
The problem is either a sinus or a fistula but they cant tell if the thing is connected to the fluid pocket or not. Either way they are reluctant to operate because im otherwise healthy and the laxatives and fluids have been effective the last few days at keeping me flowing okay. So they recommended a trial of pelvic floor therapy to see if I can learn to work around the problem over time.
They said no evidence of inflammation anywhere so if I'm stable on visbiome just keep using it since pouchitis was never the problem. It was the fluid collection (which they say has been there for years based on past imaging) and stool getting stuck due to a random change in the shape of the pouch since 2011. It's not really a J anymore.
I didn't get any specific diet recommendations. Just stay hydrated and eat what works for you, they said. The hydration seems more important than the food.
If the pelvic floor treatment doesn't work then they did say there are surgical options we can explore but they think the risks outweigh the benefits right now. Even draining the fluid seemed risky to them since there's no evidence it is infected and draining it could introduce infection or more scar tissue.
So home I go with senna and miralax and hopefully the PT works.
Thank you all for your feedback and support through this. I hope I stay quiet for a while!
