Making the decision Kock Pouch or Perm. Ileo?

[cynnycal]

Hi All,
so the long and short of my situation is, i was diagnosed with stage 3 low lying rectal cancer, caused by FAP. I just turned 26. After completing all my chemo and five weeks of radiation in attempt to shrink the tumor, i've been told by my surgeon (after some ultrasounds n such) that the tumor is way too close to the sphincter muscle, and is possibly interdigitating with the muscle, and due to the FAP, and the chance of cancer reoccurance (in the muscle possibly) they recommend i have the entire colon, rectum, anus, sphincter...all removed and have a perm. ileo.
I heard about the Kock pouch, and after reading up on it, and asking my doctor (who says he thinks i'd be a good candidate for that) I have to decide what route i want to go.
and soon...i have about a week or so to make a decision b/c i'm at the 6 week mark for being post radiation (and they recommend a 4-6 week rest after but not longer than that b/c scar tissue can make the surgery harder)
my surgeon is calling Dr. Fazio for me to have him look at my records, hopefully that is done today. and i'll get an opinion from him on the matter.
but i was wondering how does one really make a decision like this? I mean, things i have to consider are the cancer, and chances of reoccurance. and if a pouch is made, and the cancer comes back, and b/c the pouch is in the pelvic floor, if the cancer got in there when it came back, i'd have to loose the whole pouch. then i'm stuck with a shorter ileo?
i don;t know why the risk of slipped valve does not seem to concern me too much...should it? it seems that you just hve to get another surgery. but i guess noone wants more surgeries than you need.
i feel nervous about the kock pouch b/c i just feel like it is being 'sold' to me.
but then again...it IS appealing. I'm a very very physically active person, and no bag is VERY appealing to me.

anywho, any insights you may have, is very appreciated right now,

Thanks

[chrisc]

Dear cynnycal (love it!)

All I can tell you is that I had my K-Pouch done by Dr. Fazio over 26 years ago and I WILL NOT change it. I say "will not" because I've had a slipped valve for 2-3 years and even so I won't give it up. I'm not having the repair surgery until I loose ALOT of weight. I was about 100# when my sursery was originally done and once I could eat------- --------I didn't stop!!! Well now that I've doubled + in size my odds are better for the valve to be revised if I drop my weight. If I don't, then I'll probably have a "regular" ileostomy. NOT that there is anything wrong with that, I'm just REALLY attached to my K-Pouch

Mine was done when I was 18 and a Sr. in high school. For me at the time I couldn't even fathom wearing "a bag" for the rest of my life. I've only had a few minor problems in the last 27 years .

If you would like, feel free to e-mail or PM me with ANYTHING.

Chrisc

[lesson]

I read in some medical article written by doctors about the different typed of ostomies, the descriptions and the pros and cons that people with Kocks would rather have repair surgeries than to lose the Kock. People who have Kocks that functionwell LOVE them and are very reluctant to give them up when there is a problem.
I have a second because I was so used to it (for 24 years) and thankfully Dr. Fazio told me I was good for a second.
My question; why do you feel the Kock "is being sold" to you?

[cynnycal]

i don't know...i mean, when i come here and read on the ostomate board...i read alot of goods and bads.
but when i was on the BCIR site, even with the 'bads' (i.e. "i can't intubate!!")
it always ended on a "even though i was in the ER room four times in a week, and can't get my catheter in, i LOVE my kock pouch and wouldnt' give it up for the world" kinda thing...and even though those people maybe being honest...it just feels weird.

that, and i emailed one of the doctors (Dr. Schiller?) and he did email me back, but then after i replied to him, he replied back and it sounded more like a sales pitch "well, you can come here to get it done, we have wonderful hotels nearby, and you can enjoy the city, bla blah blah"

okay....maybe i'm just referring to BCIR when i get this 'feeling' of being sold.

i just like talking to people with it, unsolicited.

but i know that in everything, there are risks, pros and cons. it's just so hard to make a final decision.

i still think, well...waiting to hear from dr. fazio, i am leanign towards the kock pouch. although i just don't know if i'd be getting it right away. i may have to have the temp ileo first.

[Charles_in_Tx]

You may want to review the discussions on the Shaz Ostomy Pages. http://www.ostomates.org/cgi-bin/yabb2/ ... oard=pouch
There are several discussions about K Pouch.
Be sure to check page 2 where there are at least 4 or 5 discussions. Also discussions about Commercialized BCIR
pouch.
Good luck and be well,
Charles in TX

[Lynne]

Cynnycal,

I had a conventional ileostomy for 13 years before having Dr. Fazio change it to a Kock Pouch in 1990. I would do it all over again without hesitation ! Dr. Fazio is THE BEST and I have recommended others to him as well. He will tell you if he thinks you are a good candidate or not and DEFINITELY will not push you. He will leave the decision totally to you.

Please feel free to contact me with any questions you might have.
Good luck to you,

Lynne
CDN Chair

[Bob in OK]

Hi Cynnycal,

I wish you good luck whichever way you decide to go. Possibly, the particular disease you've had (FAP as opposed to ulcerative colitis) is relevant to the choice. I suspect that most or all of the glowing reports about Kock pouches earlier in this thread were from people who had UC.

I really can't comment from my own experience (I had UC myself, and now have a perm ileostomy after living for 4 years with a J-pouch that failed due to chronic pouchitis). But I suggest sending a private message to Ranae, one of the users of this board who has FAP (she actually has a J-pouch rather than ileostomy or K-pouch, but everyone in her family has FAP and has a diversion of one sort or another). Click here for Ranae's profile to send her a PM.

BTW, I enjoyed your description of interaction with the BCIR folks. Even without knowing the long history of unethical marketing practices they've been accused of over the years (they've probably cleaned up their act somewhat in the past 5-10 years), you instantly spotted the hard-sell they were giving you. The BCIR is definitely the more commercialized variant of the Kock pouch.

[Jacob'smom]

Hi Bob,
Can you tell me about the pouches? Kock pouches seem to be rare and there seem to be more BCIRs. What is the main difference between the two?
thansk

[Bob in OK]

Hi Jacob'smom,

The original Kock pouch was developed in the late 1960s by Dr. Nils Kock of Sweden. It suffered from a high rate of complications, especially valve slippage. Various surgeons have developed modifications of the Kock pouch to reduce those complications. The BCIR is a particular variant of the Kock pouch, developed by Dr. William Barnett, that features two main modifications: it reverses the direction of flow and it includes a 'living collar' of intestine around the valve.

BCIR practitioners say it provides better results than other versions of the Kock pouch. Some surgeons who perform other variants of the Kock pouch say that Dr. Barnett's modifications make the BCIR an overly complicated operation. In practice, since all currently performed versions of the Kock pouch have been modified considerably since the original version developed by Dr. Kock in the 1960s, there's probably little difference in success rates between the BCIR and other Kock pouch variations.

You say "Kock pouches seem to be rare and there seem to be more BCIRs." That may be true because the BCIR was heavily commercialized and proselytized and was once a pretty big industry. At its peak in the mid 1990s, there were five BCIR centers around the U.S., all affiliated with the Tenet hospital chain. Now there are only two BCIR centers, one in St. Petersburg FL, the other in Culver City CA, and neither is affiliated with Tenet any more.

Given the decline in BCIR activity, there may now be at least as many places where you can get other Kock pouch variants. The best known is the Cleveland Clinic where Dr. Fazio works, but there are others. See the Docs who understand Kock Pouch? thread in this forum.

Another point to consider: I see from your other post that your son currently has a J-pouch. In consulting with surgeons about the possibility of replacing his J-pouch with a Kock or BCIR, check whether they can re-use any part of his existing J-pouch, instead of simply cutting out the J-pouch and building a totally new pouch from more proximal intestine. When contemplating a second continent pouch, it is wise to minimize the total amount of intestine lost in the surgeries.

[Lynne]

Bob is always the expert at finding great answers to the technical questions ! As I replied in another thread, I would definitely consult with Dr. Fazio. He will let you know whether or not your son is a candidate for the Kock Pouch and what to expect.

Lynne

[life_struggles]

i am scheduled for bcir in may, i thot it was supposed to be better than the kock. Now i am second guessing....