Where are you located?

Richard.

In the Chicago area, but I am willing to travel. 

If a new pouch is a possible consideration for you then Remzi (in New York) would be worth traveling to. If a K-pouch is a consideration then that’s a different set of practitioners. If you’re committed to an end ileostomy then the pouch excision (if you choose to have it excised) can be technically difficult, and you want someone who’s done plenty of those.

Thank you for the information.  I was told that I needed an ileostomy.  I went to University of Chicago for this work up.  I was told I was out of options.   I have a history of complications including fistulas, twisted pouch due to adhesions, pouchitis, leakage, diarrhea, etc.   Two years ago I had an lower abdominal abscess that was drained (my pouch was leaking).  Recent MRI indicated debris and air in abdomen.  I think I will seek a second opinion just to give myself piece of mind.   I am not sure of the risk/benefit of a second pouch.  I am trying to wrap my head around an ileostomy.    thanks again. 

I had my jpouch removed after 25 yrs of fistulas, an abscess, cuffitis, pouchitis etc.  I now have an end ileostomy (5 yrs).  My surgeon was Tracy Hull at the Cleveland Clinic.  She and her team were fantastic.  (I documented my experience here in the ostomy discussion area).  I'm doing very well now with my ileostomy, have no more GI issues, and feel it was the best decision for me.  I hope everything works out for you - and I'd be happy to answer any questions.

Thank you! 

I can relate to anyone who is the position that their J pouch must be removed and an end ileostomy is the recommendation that their doctor has made. This was the position I was in 11 years ago.  I had knowledge about the continent ileostomy option and pursued it to a successful conclusion.  My journey is best described by an article entitled, "Researching my Options" which I published in UOAA's magazine, The Phoenix. This article was reprinted in the Quality Life Association's web site (WWW.qla-ostomy.org) under the "Ostomy Options and  Education" tab.  The QLA web site also has a listing of doctors who perform the K pouch procedure or are familiar with it.  Other information and videos are also available on that web site.

Dr. Hull at Cleveland Clinic main campus excised my j-pouch 6 weeks ago today. I have an end ileostomy with the anus closed. I’m doing really well.  Just know Dr. Hull is retiring this summer.

thank you all! 

If ever I needed an excision I'd return to Dr Kiran at Columbia in NYC.  If I was in Chicago I'd check in with colorectal surgeon Scott Strong at Northwestern (who referred me to Dr Kiran for my j-pouch). And Dr Hull is high on my list.  They all practiced together at the Cleveland Clinic.

Dr. Remzi was my surgeon in NY and he is pretty amazing.  He specializes in complex JPouch redo surgeries.  My assumption is he would have done many pouch excisions over the years.  He is at NorthWell Health now, was at NYU.  I really like him.

thank you.  Does a creation of a functional K pouch require multiple surgeries?

@MEHB posted:

thank you.  Does a creation of a functional K pouch require multiple surgeries?

I’d suggest you post this in the “K-Pouch Korner” forum to more reliably reach the right folks.

Scott's suggestion is good. The K-Pouch Korner section maintains a list of K-pouch surgeons also.  

thanks!