is it worth getting a k-pouch?

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TealDolphin
Posts: 10
Joined: 2010-07-15 18:44:39

is it worth getting a k-pouch?

Post by TealDolphin »

I currently have an ileostomy, and getting another J-Pouch is not an option because the doctor doesn't think I have enough ilium to re-do it without major risks (the first J-pouch went bad, resulting in the ileostomy), so I'm looking into the K-pouch. If you have one, was it worth getting it? I'm mainly worried about the pain during/after surgery, and the fact that the K-pouch could become blocked by something. What have been the goods and bads with your K-pouch?
Ronb
Posts: 69
Joined: 2008-04-24 21:42:00

Re: is it worth getting a k-pouch?

Post by Ronb »

Teal, while I don't have a K-pouch, I do have the BCIR pouch which is similar. Is it worth getting? I my case yes. I don't believe that there was any more or less pain than there was from getting the ileostomy 20 years earlier. I am going on 14 years with the new pouch and have not had a single blockage, and I eat anything I want, unlike when I had the bag. With my ileostomy I had more blockages than I could count, 5 in the last year that I was wearing the bag.

I don't know if you will be a good candidate since you have lost some of your small intestines. For my pouch, they used 22" of the intestines to fabricate the pouch, your doctor will have to evaluate that. The only single down side, or effects I have had is Pouchitis occasionally. With the internal pouch you will have none of the offensive or embarrassing problem that come with the bag. Good luck in whatever you decide.
ileostomy 5/77
BCIR 9/97
bcirray
Posts: 76
Joined: 2009-07-13 18:04:05

Re: is it worth getting a k-pouch?

Post by bcirray »

I echo Ronb words. I too have a BCIR, constructed eight years ago at aplms of Pasadena Hospital in Florida. Previously I had the Ileo for thirty years. Use the BCIR web site for more info on becoming a candidate. Lets just say the BCIR (internal pouch) has functioned extremely well. I have had no problem, eat most everything, am active in sports, and enjoy life. The bathroom needs are about four time a day depending on the amount of food one consumes. The pouch won't get blocked, but like any person the bowel section leading into the pouch can get blocked. The slogan we use is chew, chew, chew. You can have intubation problems with blockages in the catheter, but these are simple to rectify. I personnaly had very little pain after surgery, not like when I had my proctocolectomy forty years ago. If you would like to e-mail me for some more answers, please don't hesitate.

Ray (suskieray@aol.com)
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Lynne
Posts: 508
Joined: 2005-10-01 06:04:13

Re: is it worth getting a k-pouch?

Post by Lynne »

Teal,
I have had my kock pouch since 1990 after 13 years with a brooke ileostomy. It was done by Dr. Fazio at Cleveland Clinic. I wouldn't hesitate to do it all over again ! Please feel free to email me with any questions you might have.
Lynne, CDN Chair
fran+scott
Posts: 2
Joined: 2013-03-04 17:38:31

Re: is it worth getting a k-pouch?

Post by fran+scott »

I had an ileostomy for 2 years with constant blockages. I live in a rural area and the medical people are unfamiliar with most things. We have a wonderful support group for ostomates and I opted for a BCIR. I found a doctor through my group about a 3 hour drive away. He gave me a K pouch because he said it was the best for the way I was set up inside after the ileostomy and I trust him. Unfortunately he has moved, but I have signed up with another knowledgable physician about 3 hours away and he is great. He returns calls and even prescribes over the phone because he knows I am far away. He said if I ever have an extreme problem, just call ahead and come in immediately. I've had my K pouch for 3 years with very little problems other than occasional pouchitis which is cleared up with Cipro, over the phone prescription. I try to keep my stool very liquid for easy drainage which is controlled by my food intake. I love my pouch. I wish I had had this surgery many years ago. I am 75 years old and suffered with ulcerative colitis since I was around 16.
woodstock69
Posts: 12
Joined: 2016-09-04 17:23:38

Re: is it worth getting a k-pouch?

Post by woodstock69 »

Fran + Scott, Please share your Drs name.
Thanks
woodstock69
Posts: 12
Joined: 2016-09-04 17:23:38

Re: is it worth getting a k-pouch?

Post by woodstock69 »

Teal Dolphin,
It is a very personal choice and has many possible complications. If you are not near a Dr who is able to manage it this will be a problem in the future.
My son has had 10 surgeries, lost a j pouch, had an ostomy, then a k pouch and many repairs with many complications and logistics have been a nightmare.
cbyrnes_esq
Posts: 4
Joined: 2021-06-19 18:49:57

Re: is it worth getting a k-pouch?

Post by cbyrnes_esq »

I just got my own k-pouch a month and a half ago. The jury is still out for me. I am finding it hard to manage my electrolytes because my output is so huge. I wound up hospitalized last week with dehydration and salt loss so severe I was at risk for seizure.

I think I'm doing better now, but time will tell. With the ostomy, I didn't have to think about my health and my eating so constantly. Hopefully it will fade into the background as time goes on.

Does anyone have any tips on how to manage output? The only real tools I was given are imodium and diphenox. They work, but not great, and I have to take a lot of it. Any thoughts to share?
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