Bo Shen isn’t technically a surgeon, he’s a gastroenterologist. That being said, he does use some small tools at the end of a scope (needle-knife, various claws, etc.) to attempt to address a variety of problems without conventional surgery. It’s an easy enough trip from the DC area to NYC, and Shen’s calendar probably is more open than usual because he’s just relocated to New York. If I were in your shoes I’d at least arrange a consultation to see what he recommends. 

Hi Ellie. 

I know I’m probably going to scare you with my story, but if the pouch has to come out, the pouch has to come out.

I, like you, developed a stricture at the top of the jpouch when I had a severe flare last year. My diagnosis was changed to Crohn’s at this point. I tried dialation of the stricture twice, but closed back to the pinhole due to the biologic stelara. Biologics unfortunately will keep inflammation down, but with close strictures even if you dialate them. I no longer had the ability to pass through food at this point and surgery was the only option to remove the stricture. 

My firet impression for surgery was that the surgeon was going to only cut out the stricture and reconnect back to the jpouch, but unfortunately reconnecting the jpouch at this paticular point would restrict blood flow to the jpouch. My only option was to have my jpouch removed and a permanent ileostomy. While I have other severe complications, I am happy with my ileostomy because I am no longer in pain and no longer worrying about going anemic because of bleeding ulcers. I spent 3 very painful years before my surgery dealing with bleeding ulcers and abdominal pain. 

I don’t know what your experience with your ileo was before getting the jpouch was, but please don’t be afraid of going back to the ileo. I had a severe decrease of quality of life when I was severely sick those three years. I could barely work. I live in Japan on a visa, so the only way to stay here is to work. Having my ileostomy has given back most if my life.

I hope you can find a treatment. Let me know if you have any questions. 

-Rina

Thank you for the reply. My ileostomy was much finickier and more difficult than my j-pouch has been. I had trouble with blockages and I had constant reactions to the adhesives but I don't know if they have changed a lot since the early 2000s. I had random leaks at school, on trips, on airplanes, in the car and I developed burns. 

I hope the Remicade isn't responsible for the stricture! I've had them dilated in the past (pre taking any medications) so I know I eventually get them. In the past, the bad one was at the rectal site instead of the top of my pouch but the dilations always worked well (>6 years between each).