K-pouches

[renee']

I have had an ileostomy for 22 years. I have an appointment with Dr. Victor Fazio at the Cleveland Clinic this month to see if I am a canidate for the k-pouch. All I have ever heard is that they are very problematic but I am excited to see Dr. Fazio and get his opinion. Can anyone give me success stories and problem stories so I can make an informed decision if I am ok'd for one. It seems like a fantasy to not have to wear a bag after 22yrs.
I am new to this. I have never posted so I hope I have done this right. Many thanks. Renee'

[chrisc]

Hi Renee,

I'm glad I saw your post! I have had a K pouch for almost 27 years, done by none other than Dr. Fazio!
I LOVE it.
I'm sure that you've heard all about the "slipped valves" that seems to have everyone so frightened of going to a Kpouch. Well, I'm here to tell you that I don't think that it's really that common. They have made so many advances on how the valve is done over the years. Not to say that it doesn't EVER happen, but there are alot of Kpouchers out here that have NO problems.
With that being said-----
I have to confess that I have a slipped valve. OK, don't freak out! I live with it, no biggy to me. If I'm totally honest with myself (and you), I could really be the "poster child" for what NOT to do with a K pouch I was 18 when I had mine done in 1980, and I knew everything!! Alot of times Dr. Fazio would tell me the do's and don'ts and I heard, BLAH,BLAH,BLAH. I'm young and you can't tell me anything. Well, now I can hear!!!!
I truly believe that my valve has slipped because of my own fault. I love food!!! I love to cook! Therefore I MUST eat!!! I had no trouble for 23-24 years, then I managed to go from a "nornal" weight to OMGosh I'm gonna explode The one thing I really regret.
My valve can be repaired, no problem, it's just that it can't be done at my current weight. I have alot of weight to lose, and it's very slow going, but I will get there. I would never give up my K pouch without a fight.
You have made a good choice in Dr. Fazio. He's the BEST. In my experience, he's always up front with you. If he tells you something, it's the whole truth, no "sugar coating" it either. Don't let that alarm you, he is also one of the kindest and most gentle men that I've known.
If you would like to know anything else, from a personal stand point, just ask me. Best of luck to you. Hope all goes well.

chrisc

[lesson]

Hi Renee
In 1979, when they were very new I had a Kpouch done for UC. It was done by a wonderful doctor at the Mayo Clinic. That Kock lasted 24 years. I , like chrisc, probably did things I shouldn't have and had a slipped valve. I did go into surgery for a repair ( not by Fazio) that turned out unsuccessful and ended up wearing a bag. After two years of that, I consulted with Dr. Fazio about the possibility of a second Kock. He did say I was a candidate for another and went ahead with it January '06.
I will be going to Cleveland for my one year post op visit 2/1/07.
I am happy to report there have been no surprises

[renee']

Dear Chris,
Thank you so much for sharing your information with me. I'm getting more excited about this. I see Dr. Fazio on January 16th. It's a four and a half hour drive for me to get there and I'm sure it will seem much longer. I've read many good things about Dr.Fazio so I truly feel blessed to get in to see him. Just out of curiosity what happens when the vavle slips or malfunctions? Do you know of any sites that actually show what the valve looks like or how the end result will look like on your stomach.
Good luck with the weight loss. Sometimes it helps when we have a goal and a good end result. Again thanks. Many blessings your way.
Renee'
ps. How do you e-mail to each other so that it is not all in the forum?

[Steve S]

To e-mail or send a personal message you simply click on the appropriate button under the message. Steve

[Lynne]

Renee,

Dr. Fazio did my Kock Pouch in 1990 and he is my hero ! Before that I had a traditional Ileostomy for 13 years. My stoma is exactly the same and in the same spot. Sometimes they move it, sometimes they don't. It depends on location, scar tissue and muscles, etc. You will not be sorry ! Dr. Fazio is a wonderful man and he will be totally honest and up front with you.

Please let us know how you make out and what you decide to do. Feel free to email me with any questions you might have !

Lynne
CDN Chair

[kat girl]

I just saw this post tonight and I just got back my my consult with Dr Fazio today (1/16) during which he recommended the k-pouch for me as well. How did your appointment go? He told me he was doing 7 k-pouches in 9 days this month and that he has done over 500! He was indeed very gentle and kind. I am excited about the prospect of a K-pouch. I have crohns disease in my j-pouch but he said I still make a good candidate! I have had 2 remicade infusions and he would like me to have 2 more then I may have the surgery this Spring or early Summer. I'm happy to find so many satisfied K-pouchers.

Any advice? Things you simply can't eat? Favorite catheders or patches for the stoma? Its a brave new world for me (I've had my j-pouch 14 years and had my loop ileo 11 months now because of a nasty pouch-vaginal fistula).

And good luck to you too Renee, I hope you get good news from Dr Fazio.

[Lynne]

kat girl,

Dr. Fazio is the best ! I am surprised that he will do a Kock Pouch for Crohns ! That's great for you. I use Marlen FR 30 catheters and get my stoma covers from Austin Medical. If you call them or email them they will send you some free samples.

http://www.ampatch.com/

Lynne

[renee']

Hello
I just wanted to thank those who wrote and encouraged me. I saw Dr. Fazio on the 16th and I am going to go through with the K-pouch. After 22yrs of wearing a bag it is hard to wrap my mind around the idea that I will no longer have to wear one(hopefully). I guess the surgery will be done in April so I will let you know the outcome. I saw another post about what you can eat and what you should avoid. Can anyone share this info as to how restrictive the diet should be. I know the form they give sounds pretty standard for most ostomy patients but there nothing like hearing from someone else's experience.

[Charles_in_Tx]

Check this site: J-pouch.org Discussion, K-Pouch Korner:

http://j-pouch.org/eve/forums/a/frm/f/5531006091

[cynnycal]

Heya!
I'm a brand new kpoucher (well, couple months old now)
i never had a regular ileo, or a jpouch, i went straight from having a colon, to having a pouch. one step (but that was because i have FAP and the more you have surgeries the more you have risks for these nasty little buggers known as desmoid tumors. aaaaaanywho)
Apparently, i'm getting rather well known for showing off my stoma (hehehe)
but that's only b/c i think it's so darned cute.
if you look at my past posts i made a whole thread on its own to show it off (i think it's titled 'i love the stoma' or something like that)

here's the most recent one (took it to show a girl how large the stoma would be...which it really is teeeeeeny tiny):
http://www.t-mobilepictures.com/photos/ ... gkp3zgtyn4
(that's a dime on one side and a 2 Euro coin on the other...don't ask why a Euro. for some reason it just happened to be lying next to the dime)
for some other enlightening pics, check these:
http://www.t-mobilepictures.com/photos/ ... l9liapzult
(removing the patch before intubating)
http://www.t-mobilepictures.com/photos/ ... i3k7ag6iav
(end of the catheter that i use to intubate. it's actually larger than the one i normally use...but i'm recovering from chemo, and this is the one that's working for me right now)
http://www.t-mobilepictures.com/photos/ ... 27r9lwt90m
and that's the catheter i'm just about to insert in the stoma.

so, hope that gives you some better ideas about what to expect.