Hi there - I have a j-pouch with a recurring separation at the pouch-anal anastomosis. My surgeon wants to do a pouch redo, divert to ileostomy for a few months, and then close. But, he thinks I may have been misdiagnosed and that I might actually have Crohn’s. So, if this doesn’t work, he will want to give me a permanent ostomy. I am just really hoping there are some other surgeons out there - preferably in the Boston area - who are willing to think outside of the box. Know anyone?? I’m 24 yrs old, I’ve been sick for a few years, my dad passed away suddenly & I just want to enjoy my life again. I’ve had an awful time with the ostomy in the past. I admire those of us who have permanent ostomies - I guess I’m just not strong enough. I do have a second opinion scheduled with Dr. Remzi in NY, but going with him might not be covered by my insurance since it’s out of state. If you have any advice or recommendations please, please help yo girl out. This thing is a ticking time bomb since fluid is leaking out of the separation. I need to act fast. I appreciate your time reading my post. xoxo Katie
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Your stronger than you think babe
Since it is not absolute official you have Crohns, I would go for the pouch redo, that you do not have regrets in the future.
Honestly for other opinions: I would just call up the colon surgeon offices and tell them my situation and go from there.
I hope everything works out and keep us updated
If you need an ostomy in the future, rock it
Sorry to hear about your father! I bet he is in a better place and that he is very proud of you
Thank you , Lauren 😊 Your support means a lot - I’ll be in touch ♥️
@Katie S Going to see Remzi is an excellent idea. Perhaps you could contact your insurance company in the meantime to get clarity about what sort of coverage you have for a visit with (or surgery with) him. You are wise to look for another surgeon. Beth Israel has historically had a good IBD program, but I haven’t lived there for a long time. Have you got a good GI who can help you resolve the diagnosis question? It’s hard to tell if your surgeon has good reason to suspect Crohn’s or is just looking for a diagnosis to excuse his poor result.
Thanks, Scott! To answer your question, no, I’m not a big fan of my GI doc. Nice guy, but doesn’t seem to know much about the nuances of j-pouch patients. He also is on the fence about my official diagnosis. I was searching for a new GI doc, but then had to redirect my research toward surgery when I was told I’d need the pouch redo very soon. I really appreciate you taking the time to respond! 😊
Great idea getting a second opinion from Dr. Remzi. My primary concern about a pouch redo if you do indeed have Crohn’s is the loss of small bowel. Since loss of functional small bowel is the biggest challenge with a Crohn’s diagnosis, you want to preserve as much of your small intestine as possible.
If your j-pouch is otherwise healthy, ask about pouch advancement surgery, where the rectal cuff and anastomosis is removed, and the existing j-pouch is brought down and reattached. Ask Dr. Remzi about it.
Thank you so very much. Doing my best to take deep breaths.