Docs who understand Kock Pouch?

[LindaAukett UOAA Advocacy]

The UOAA toll-free helpline* was contacted recently by someone with a Kock Pouch (the original continent ileostomy). The surgery had been done 24 years ago and the person had no trouble until now - but now there might be a need for additional surgery. The person asked if we could suggest a physician in their area who was knowledgeable about the Kock Pouch, and who wouldn't just say 'take it out' as the easiest course.

It took some doing but we were able to identify one - though whether that physician will be acceptable to the person's health plan is a different story.

It occurs to me that we could be doing a real service by collecting the names of doctors (surgeons, GI docs, Ob-Gyns and others who are familiar with a Kock Pouch -- and the later BCIR) and how to help patients solve problems without losing the pouch. There are probably a number of people like the one who called - had it +/- 20 years ago when it was the alternative of choice, not having a problem now but something could crop up at any time - and we should 'be prepared' to help them.

If you have one to suggest, it would be great if you will share their name, specialty, and some contact information -- post it here. Those who answer the helpline - and those who check out this board in the future - will be very appreciative.

Thanks,
Linda

-------------------------
Linda Aukett
Advocacy Chair, UOAA
Advocacy@uoaa.org

* the helpline is 800-826-0826 - but if you have a question that wouldn't be appropriate to post here, it would be appreciated if you would send inquiries via E-mail to info@uoaa.org (since you are reading this online and presumably do have E-mail).

[AliT]

Hi Linda,
Wonderful idea!!!
I'm having A LOT of trouble finding a local doctor who is able and willing to take me on. I'm just about 3 months post-op w/ a Kock pouch performed by Wonderful Dr. Victor Fazio out at the Cleveland Clinic, Ohio. I live in NJ. So far, the only other doctor I personally know of with years of experience doing k-pouches is Dr. Joel Bauer in NYC. He's associated with Mt. Sinia hospital and he's a really good surgeon. I have an appt. w/ a Dr. Notaro in Edison, NJ in 2 weeks. He trained under Dr. Fazio so he should be familiar w/ the procdure. I will post after my meeting w/ him.
I hope other folks will share any other names of competent doctors and hospitals currently dealing w/ this procedure. It just seems like there really isn't a whole lot out there - kind of frustrating for sure.

[Lynne]

Along with Dr. Fazio at Cleveland Clinic and Dr. Bauer in NYC, you can add Dr. Dana Launer in San Diego to your list.

Lynne

[LindaAukett UOAA Advocacy]

Thanks for Dr. Launer's name, Lynne. After I posted the initial message, I realized I ought to mention the doctor we were able to identify for the caller I mentioned - so here's his contact information too:

Dana Launer, MD
Advanced Surgical Associates of La Jolla
9850 Genesee Avenue, Suite 640
La Jolla, CA 92037 (just north of San Diego)
Telephone: 858-558-2272
Facsimile: 958-558-2285
dplauner@advancedsurgical-sd.com
jworsey@advancedsurgical-sd.com
www.advancedsurgical-sd.com

Linda

[barbie]

I have not had a Kock pouch, just the ileostomy I had 4 years ago, but I did see Dr. Fazio recently for possible surgery for a longstanding fistula and I can tell you that he is a wonderful man with a gold standard reputation, his staff is great and the hospital was the most organized and upbeat institution I have ever come across. I didn't need the surgery after all, but I would trust Dr. Fazio with my life.

He is also known for having improved the valve on the Kock pouches.

[beths]

Just had an illeostomy done by Dr. Remzi who trained under Dr. Fazio at the Cleveland Clinic. Dr. Remzi does the knoch pouch, but he said that I was not a candidate at this time because I am overweight by probably 40 pounds. If I loose weight it is a possibilty for me.

My illeostomy was done laproscopy(sp?). It is great not to have the big incision. My main problem is that my back pain (from before) has reoccurred while I was in the hospital. (Jan24.)

.BethS

[Bob in OK]

Linda,

Another to include on your list is Dr. Beck at the Ochsner Clinic in New Orleans, who was an advisor for UOA. You can see some info about him at http://www.ochsner.org/find_a_doctor/doctor/david_beck/ - and also see page http://www.ochsner.org/programs/colon_a ... therapies/ which mentions specifically that they do Kock pouches at this facility.

[Lynne]

Thanks Bob. I was not aware they did Kock pouches there.

Lynne

[lesson]

Dr. Fazio has recommended both Dr. Steven Wexner and Dr. Juan Nogueras as experienced . They are both at the Cleveland Clinic Florida in Weston (south Florida)
Neither of them do new Kpouches, but they do revisions/repairs.

[Jasmine]

I know they do revisions at the Mayo Clinic in Rochester, Minnesota. I had my pouch scoped and x-rayed in 2001 and I saw a Specialty Doctor at that time Dr. Tremaine, who directed all the tests needed. I don't know which doctor does kock pouch revisions, I would have to call and see. I think this is a very good idea to keep up on who does the Kock Pouch and where, how many.....and who does revisions, how many and where.

My pouch will be 28 years old in May and so far I have had no revisions, no leaks of stool or gas. I had an internationally known doctor, Dr. Beahrs who is now retired; do my Kock Pouch. I feel blessed and would do it again. Thank you Dr. Beahrs.....in case you are reading this. I know he had lunch with Dr. Tremaine around the time I went for my check up in 2001 at the Mayo Clinic.

I also hope the day never comes when this wonderful option isn't available to patients. I am all for saving a J-pouch if you have one. One thing to always think about is ending up with "Short Bowel Syndrome".....so be sure you know how much intestine you have so this doesn't happen to you. I think usually you have enough for 2 pouches in a lifetime, but that would depend on how much intestine they had to remove the first time around.

[Les Williams]

In doing my research when I had my Koch pouch done, I contacted the office of Drs. Beart and Kaiser at USC Norris. I am two months post-op now and had mine done by Dr. Launer - fantastic doctor and a wonderful man.

Les

[novagrl]

Does anyone know of any doc's at Johns Hopkins Hospital who perform Kock Pouch revisions?
My original surgery was performed there in 1992 by Dr.'s Handelsman and Fishbein.

[indialogue]

I have a great referral in the Seattle/Bellevue area of Washington state:

Oliver Biggers, M.D.
1370 116th Avenue N.E. #105
Bellevue, WA 98005
(425) 453-8355

[jpotts]

My Urologist was Dr. Mark Austenfeld at 816-531-1234. He did an Indiana pouch for me, not sure if he is or is not experienced with the Kock but he is the best in the four state area and would be able to recommend someone. His Nurse Practicioner is Jamie Mehl.

[LindaAukett UOAA Advocacy]

beths clarified that Dr. Remzi is at the Cleveland Clinic.

And Gerald reports via email:
"I had a urinary koch pouch installed in 1990 by Dr. George Webster at Duke University, Durham, NC. I catheterize every 3 Hrs./less. My normal/athletic activities are not curtailed -- at 81, I'm able to bowl in our Sr. league. The only downside for me is having to set the alarm clock for awakening during the nite. Hope this info is helpful."

Thanks to both of you. Anyone else?