I had a J pouch for 30 years that had to be remove4d due to high risk of cancer.  Although an ileostomy was recommended. I strongly did not want one.  I was aware that options not requiring an external bag existed and was able to get a continent ileostomy that has given me a good quality of life for 11 years,  I wrote an article entitled, "Researching My Options" that was published in UOAA's magazine, The Phoenix.  This article can be viewed on the Quality Life Association.s web site (www.qla-ostomy.org) under the  Ostomy Options and Education tab.  Please feel free to send me a PM if you have any questions. I can also give you my thoughts about surgeons who can handle complicated situations.

Hi, I am in the same situation as you. I've had my pouch for around 25 years, although it has never functioned and I've had an ileostomy since. However the pouch is causing problems with high imflamation (this happens even when it's not being used) and needs to come out. I've been told it's a difficult operation given the scarring around it. I think specialist bowel hospitals are the place to have the op. I'm looking at St Marks in London.

Living in England I'm unable to offer you any advice about surgeons in the US but just wanted to empathise with your situation and from papers I've read this operation can be very successful.

@scallop posted:

After 25 long years I’m seriously considering removing my j-pouch and switching to an ostomy.  My surgery would be complicated because my j-pouch was redone in 2001 and I have lots of scar tissue.   I had seen (and loved) Tracy Hull but she is now retired.  I’d love to hear suggestions.  The surgeon I consulted here (in San Francisco) said she would not be comfortable removing the pouch due to scar tissue but Dr. Hull said it would definitely be possible.  And I don’t want to keep it if I’m going to an ostomy.

Any surgeon recommendations (any location) appreciated.

Thank you.

Dr. Allen Herline in Florida.

He was my surgeon at Vanderbilt in Nashville. He’s wonderful!!!

@HelenD posted:

Hi, I am in the same situation as you. I've had my pouch for around 25 years, although it has never functioned and I've had an ileostomy since. However the pouch is causing problems with high imflamation (this happens even when it's not being used) and needs to come out. I've been told it's a difficult operation given the scarring around it. I think specialist bowel hospitals are the place to have the op. I'm looking at St Marks in London.

Living in England I'm unable to offer you any advice about surgeons in the US but just wanted to empathise with your situation and from papers I've read this operation can be very successful.

Hi Helen -- Sorry to hear it.  Best of luck to you,   Let's stay in touch.

Dr.  Sandra Beck. University of Kentucky Hospital

I would suggest Dr.  James Church.  He was with Cleveland Clinic for a number of years and is now with Columbia University in NYC.  He is referred to as the esteemed Dr. Church.  He did my pouch 25 years ago at the Clinic and reconstructed a botched pouch of a friend - my friend and I are both in our 90's now.  Google him.

Hi Bruce - Thanks.  The late and great Dr. Fazio did my pouch redo long ago.  I'd forgotten about Dr. church. While I detest Columbia due to receiving horrible care from Dr. Shen since he moved there, I will check him out.

Thanks so much!

Debbie

Dr Eric Weiss at CC Florida removed mine, he is the most experienced , he also removed my son's

Hi Woodstock69

Thank you very much for the recommendation.   I hope you don't mind if I ask a few questions:

What led you and your son to have your pouches removed?

Was the surgery complicated?

How was the recovery?

How is life with the ostomy?

I had my pouch initially done in 1998 and then redone by Dr. Fazio at CCF in Cleveland in 2001.  It has never worked well but now it works very poorly - I have to catheterize and irrigate 4x/day in addition to other bathroom trips in between.  Because the pouch was re-done, scar tissue is a big issue.

Thanks so much,

Debbie

(direct email address: scallop87@gmail.com)

Dr Remzi is the best jpouch surgeon in NYC. He handles the very most difficult jpouch surgeries in the world. I am sure he would be capable to remove it.  Hes at Northwell