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Reply to "I need help with finding a j pouch specialist"

I am so sorry that you are suffering this way. It also sounds like you are not getting adequate communication with your providers. It really is their job to be sure you understand what their plan is.

It sounds like the original plan was to attempt dilation of the stricture under anesthesia. Usually this is done with a balloon or metal sounds. There is no need for a diverting ileostomy for that. Then it seems that they intended what is known as stricturoplasty. This is not a minor procedure and can be very painful if the stool is not diverted while it heals. Another option they use is what is called pouch advancement. It is when they remove the retained rectal cuff and reattach the pouch closer to the anal verge. This is necessary is they cannot easily break up the ring of scar tissue. Again, a diverting ileostomy is usually required.

Either way, a second opinion seems warranted or switch to another surgeon that may communicate with you better. The are a number of people here in the New York area, so hopefully you can get some recommendations.

Jan

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