Hi guys,
In an effort to promote k pouches for the purpose of inciting surgeons to learn the technique and patients to discover it and have it done I am looking for testimonials of successful k pouches from members who are willing to share their stories.
I will be creating a non profit orginasation to promote k pouch education, the training of k pouch surgeons and the search for k pouch patients including people who want to convert end ileos to k pouches and failed j pouches/pouchers that want other options.
Let me know what your opinion is on the subject and if you think that it is a good idea or if you have any suggestions.
Original Post
Fantastic idea, Sharon! When I had my ileostomy for 29 years, none of the doctors I went to told me anything about Kock pouches & that that was an option for me. I discovered it myself on the web. I would have had my ileostomy converted to a Kock pouch years earlier if I had known about it. It seems as if surgeons are not willing to learn about doing the surgery because it is a very technically difficult surgery & in some cases multiple surgeries are required to achieve a successful outcome. Most of the surgeons presently doing Kock pouches are probably close to retirement & anything that can be done to incite surgeons to learn, improve & carry on with the Kock pouch surgery would be of great help to those of us who have no other options. Even though I have had problems getting my Kock pouch to work properly, I am so glad I had the surgery as the quality of my life has improved immensely. Please let me know if I can help with your project in any way. - Dixie
It is a great idea. I know now it is experience and money in the states. Most aren't out of school long enough to properly learn to do the surgery and or others don't want to give up working in their practice and making money to learn something new. It's sad really. We need young ones involved!
I can share mine.

too bad you can't go to the QLA conference in Florida this Sept. Meet a lot of people there with continents, want continents and doctors/nurses.
I think that would be great! Maybe with the help of the internet these days the k-pouch could become a bigger thing?
Great idea. I sent a formal letter to all the surgeons on the american side at http://www.fascrs.org/ and NO ONE replied.

I think the challenge is huge. It will start with GI dr knowledge, ET nurses (for those like me that were raw from allergic reaction to adhesives, etc.) and the volume of need.

I do know that at our Take Steps walk, a top GI dr at University of Irvine recommended only a KP and for his patient to see Dr Worsey at Scripps or Cleveland Clinic. I got referred in 1980 from my GI dr. And, my current GI dr is familiar with KP and does my scopes.

I think the tactic may be to find those with ileostomies or failed jpouches in need to seek alternatives. If there is demand, surgeons may finally be aware and interested. It comes down to the requirement of committment on the surgeons end due to followup, etc.

Good luck, I'm all for this...it's an uphill battle.
I think it would be awesome if it was global. I am sure there are people in other countries that are wishing they could have a continent ileo. I see people ask all the time on forums.

Doctors without borders but for people with no colons. I do branding, identity and marketing for a living and run my own business that supplies graphics for businesses and homes so sure I could help somewhere along those lines.

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