Routine pouchoscopy shows there's a leak at the tip of the "J"

A GGE is a Gastrograffin Enema.  It is a diagnostic test that determines if you have a leak.

if your pouch is working and inflammation is in remission, no one would ask you to remove the pouch.  Also, possibly the leak can be fixed and it could help your fistula. I would get the test.  Remember- you are in charge.  I felt helpless for decades with this disease and treatments, but finally after losing my colon, I tell myself - “I am in charge now”.

Doug, thank you for your comment and the support! It's been a tough road since I was diagnosed with indeterminate UC in 2019 -> major flare Feb 2020 -> 3 step JPouch finished Jan 2021, and then chronic pouchitis since May 2021. Fistulas, and likely Crohn's of the pouch since April 2022. I've been having great success for a year now thanks to hyperbaric oxygen therapy, Humira and tinidazole. It's just such a kick in the pants to go in for a routine scope and get this news.

Not even sure if/how I should tell my new girlfriend. She's a nurse so nothing grosses her out and she's extremely supportive, but she's never seen me at my worst, only knows based on what I've told her (I left out the rare nighttime leakage stories haha). I don't mean to get so down but sometimes it's a lot to handle for a guy in his mid 20s.

@BK 123

You're in really good hands with Dr. Shen and the Columbia team.  I had a GGE there - they administer an enema of fluid that shows up in imaging.  Roll you around in the table til the pouch fills, then get you onto "the throne" - a makeshift toilet - and take pictures while you pass the material.  Certainly not the greatest way to spend spare time, but the attendants and the radiologist were exceptionally kind.  

It must have been tough getting the diagnosis in 2019 and needing the surgery so soon after.  These are bad diseases, whether they blow up all at once or beat you down so slowly over decades that you hardly notice what you've lost to it.  

You sound like a resilient person with  a supportive relationship. By following the recommendation for further tests, if there is something going on, you've caught it early and will be in the best possible situation to address it.

Good luck - I hope you'll  let us know how it goes.

@BK 123 I can't imagine a better doc and team to address the complication. I'm sure many would say the best in the world. I hope knowing you have the best of the best on your side is a comfort to you and to your new girlfriend if you decide to share it with her. As to that, there is no way any of us can advise you other than encourage you to trust your instincts and perhaps ask yourself if the roles were reversed, and she had this ahead of her, would you want to to know?

I echo AMB's comment above - please let us know how it goes, we are rooting for you.

Thanks all for the kind words of support. I saw my surgeon today for a routine follow up and briefed him on Dr. Shen's findings from my endoscopy. He looked over the pictures as well. He did say while it isn't common, having a leak at the tip of the J is a known risk and he's fixed them before. He assured me that it is a relatively easy fix, they would sew it up laparoscopically. As to whether a temporary ostomy is necessary, it'll depend on how much inflammation there is. I have both the MRI and fluoroscopy scheduled next week and he will decide what to do based off of the results. I do slightly better now.

Never a dull moment, huh?

@BK 123 I hope learning from your surgeon that it is a "relatively easy fix" and he's done them before is comforting. Fingers crossed for you that the MRI and fluoroscopy go well. It's helpful they are both scheduled for next week - that's soon by today's health standards. Looking back on the wild ride (agreed) sometimes the time between diagnostic appointments proves to be the most stressful - the not knowing exactly what's ahead on the next curve.

Thanks for checking back with us. Stay in touch, 'k?

Hi all,

Quick update - had the fluoroscopy done and to my surprise they said there's no clear sign that would indicate a leak or perforation of any kind. The images showed that my pouch kept the contrast contained and the small bowel distended normally. Awaiting the MRI results and having a full blood panel done today. Very pleased to hear this news!