Hi...this is just a note for those thinking of or newbies.

Remember these forums typically do not hear from the hundreds of people living day to day with full functional continent ostomies (BCIR and KPs).

When asking for information, please keep in mind many of us have had several complicated redoes and that doesn't mean that it will happen to you.

It's best to collect all the information but keep in mind that there is so much good news out there too, all with minimal related issues.

Best, Janice
Original Post
Good post Janice. I remember when I was new reading all the problems people were having and wondering if I should get a kock pouch or not.

Even though I just lost my kock pouch which was made from a 15 year old j pouch I still would have had the kock pouch surgery.

For 8 years my kock was ok. No valve problems just some scar tissue issues. Even though in the end, July 17, 2014 surgeon found my kock pouch had fallen off the wall and into my pelvis he had to remove it. I dodged a permanent ileostomy for 22 years. YAHOO. Now at my age 63 I can deal emotionally with an ileostomy a lot better than when I was 40. Thank you Dr Launer and Dr Worsey who do incredible work in the field of colorectal surgery. Jeanne
36 years with no problems or further surgeries. I now am dealing with a stricture in the valve that was dilated and waiting to see if this corrected the problem of not being able to insert the catheter. Even with this problem, my valve is still continent....no gas or output escapes. I would do it all over again in a minute. This is a great procedure. I feel the ones who don't have any trouble don't come to the site. I started coming here do to harassment because I have an ostomy....I wasn't having problems with my Kock Pouch. So the harassment brought me here. I am so happy I found this site it is wonderful and a support system with people who live it. Thank you Bill for creating it. I have mentioned this site to Dr. Doizois, Professor of Surgery at the Mayo Clinic.

35 years with no problems - then various problems intubatin for the past 3 years. Ended up in hopital with an infection a inflammed valve. The GI team inserted a tube which I kept in for 6 weeks; I changed weekly by inserting  an endo wire in through the old tube, pulling it out over the wire (used in endoscopy), then using the wire to guide in the new tube. Now inflammation is gone and sll is back to normal. 

I had a conventional ileostomy for 2 years and still skiied, swam and hiked. My skin is ultra-sensitive and breaks down easily so the Kock pouch was a godsent!  In spite of this recent problem, I've had a better quality of life with the pouch!!

K pouch since 1979, numerous redos due to an other underlying disease (Ehler's-Danlos...a congenital collagen deficiency that that means that I do not heal like other people, my body does not make the 'glue' needed...so I fall apart at the seams).

I moved across the Atlantic and started a new life in France thanks to the k pouch. I teach, lecture and travel. I would have never dared to do any of these things pre-pouch and wouldn't have had the courage with an ileo.

My pouch gives me liberty, freedom and a strong sense of normality (most of the time!) It has its moments when I rant and rave and complain (silently to myself) but most of the time I do not think about it or I couldn't do everything that I do in life...which is a lot for even normal people. 

I am an Everready Bunny...always on the go. Thank you K pouch

Sharon

 

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EmilyJT
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