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Its been a while since I've posted on here because things were going really well health wise. I developed inflammation in my j-pouch but Remicade made a huge difference and I was feeling awesome. It was also helping my ongoing fistula and I was excited to increase the dose and get my seton stitch OUT. Then I went it for a routine scope to check how well my medication was working and to address the issue that I sometimes I have a sense of constipation despite having a j-pouch. My GI IBD specialist did the scope and discovered that I had ZERO inflammation in my pouch YAAY but I did have a stricture at the top of my j-pouch, I assume where my intestine and pouch connect. She dilated it the smallest amount possible but still caused a tiny perforation. It wasn't noticeable until the next day when I developed a distended belly and very severe pain. I ended up getting sent by helicopter from the regional ER to the major medical center where my GI team is because they couldn't safely operate on someone like me locally if I went septic. Thankfully it healed itself after a week with an NG tube, strong pain killers, and IV antibiotics. Now I am in limbo because my team doesn't know how to address that stricture and its still small enough to make them nervous although they aren't sure how I was eating what I was eating with it. 

The GI IBD chief wants to send me to a specialist surgeon (probably Dr Shen) who can deal with the stricture without dilation. Has anyone experienced this? It sounds like they do some sort of cutting to remove it but the risk is bleeding vs perforation?

I was so scared I was going to lose my pouch last week and I get so tired of the surgeons down playing how disruptive having an ileostomy can be vs a very well behaved j-pouch. I've had my pouch 18 years with 1-2 cases of pouchitis and 1 disruptive stricture before this one. I do have the inflammation issue but my impression is that removing the pouch wouldn't help since if my diagnosis is Crohns I would still have to be medicated. They also seemed to assume that fistula= Crohns even though I had the fistula for 10 years before developing any ulcers in my pouch. 

 

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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). 

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