UOAA Discussion Board

Great job Holly - Thanks !

Happy to be of help.
Always.

Dr. Graham Greene at the University of Arkansas Medical Center. I have the Indiana Pouch and agree that a lot of doctors have no idea of what they are. Hopefully, with threads like this one, we all can share information with our local, hometown doctors.

Hollys list was very extensive and helpful. Thank you. I did notice that Dr. Ernest Rehnke was not listed. He created my BCIR and is familiar with K pouches. His office is in St. Petersburg, Florida and is affiliated with Palms of Pasadena Hospital.

Hi, everyone! This is my first post. Had ileostomy 1/14/09,(M.S. related) internal hernia due to surgery repaired 1/17. I tried to have the Kock pouch procedure approved by my insurance (to be done at the Cleveland Clinic) but it was denied. I still hold the hope of that option and my surgeon (Dr.Kristina Johnson in Hartford,CT) conferred with Dr.Remzi in Cleveland as to how to perform my ileostomy with the option of conversion at some point. Rough recovery-- leaks (dent in abdomen), bags bursting, etc. Crazy question: with thanks to Holly for Dr.Bauer's name in NYC, does anyone have any idea what the noninsured cost of a conversion might be? I'd take out a car loan to get out of this mess! Is pouchitis common? Thanks so much for your help, best wishes, Susan

Hi..I suggest you keep a daily log/journal of issues (physical and/or mental) surrounding your traditional ileostomy for several months, and send it along with another request for out of network approval for a kock pouch or bcir surgeon. You may have to see a G.I. dr to go about getting a 2nd referral. This surgery is very unique and takes years of hands on practice and is well worth traveling to a specialist. Some on the list may be in private practice and may consider reducing fees - doesn't hurt to contact them and discuss. Take your time, your body needs to heal from the ileostomy before a conversion takes place as well.

Pouchitis is not much of a problem for most. But, there is alot to research to see if a continent ileostomy is right for you. After your research and reviewing your list of problems with the bag, you may have a stronger chance for appeal to your insurance company.

Here is another forum that has alot information. http://j-pouch.org/eve/forums/a/frm/f/5531006091

Best to you.

thanks so much for your suggestions and advice! Insurance being what it is (going to hope everyone's seen "Sicko") my question about cost in general I'm keeping out there though for anyone else who's been denied and gone ahead on their own... thanks again!

In another forum, a member in the UK mention this surgeon may be doing kpouches and I sent an email to confirm and here's his reply:

Dear Janice,

There seems to have been a revival of interest. We have done 3 in the last year. Please do add my details to your list of surgeons.

Neil

Professor Neil Mortensen
Dept Colorectal Surgery
John Radcliffe Hospital
Oxford OX3 9TA
Tel +44 (0)1865 220926
Fax +44 (0)1865 851173
Neil.Mortensen@nds.ox.ac.uk

Hi! Does anyone know how much a conversion from ileostomy to Kock pouch might cost (or just a Kock pouch?) in the NYC area? e.g-- I saw from my insurance statement that for my hospital stay and two surgeries including traditional ileostomy and inpatient 9 days, Hartford Hospital charged $33,000. If anyone has seen Dr.Bauer in NY and has any idea, please let me know? Thanks!!

Hi...Noticed your post regarding Koch Pouch and Dr. Bauer. He created my Koch Pouch and in my opinion he is the best surgeon for this type of operation.
Very nice man and great surgeon. I don't recall cost(s) of surgery, but I am guessing it is different for each individual, according to type and complexity of the surgery. But I know that he is very experienced and can and has taken patients with complex surgical issues and has sucessfully helped a lot of people with with all different types of abdominal surgery...ileostomy, J-Pouches, and as I mentioned, he is awesome at surgery involving all aspects of Koch Pouches. Dr Bauer is in pvt practice, but is affiliated and operates at Mt Sinai Hospital. I think he is even a Professor of Surgery at their medical school. As noted, he created my Koch Pouch and valve, and all is great...it is a big operation, but after healing, you will be very glad that he was your surgeon...of course, there can be no guarantee, but he tries his absolute best to give every patient a good outcome. He saved my life and I highly reccomend Dr Bauer for Koch Pouch Surgery due to his amount of experience and skill as a surgeon.

Lynne wrote: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

Please add Dr. Donald Schiller to your list.
His information is:
9808 Venice Blvd, Ste 603
Culver City Ca 90232
310-204-4565
website: http://www.ileostomy-surgery.com/

here's an updated list (from Holly's great list) ...added both bcir and kock pouch surgeons. Also some surgeons perform urinary kock pouches, too, so if your surgeon is not on the list, please add! We want to keep this active continent ostomy list up-to-date.

Here it is in no particular order, US first followed by Outside US:

Continent Ostomy Surgeons (Kpouch or BCIR)

U.S.

Dr.Gregg Shore-
1201 5th Ave.N.,St. Petersburg , FL 33705
888-825- 1495
http://www.intestinalcontinence.com

Dr.Jeffrey Milsom
1315 York Ave.,NY,NY
212-746-5597
http://www.cornellphysicians.com/jwmilsom/

Dr.Joel Bauer, Dr.Stephen Gorfine and Dr. David Bub
25 E. 69th St. NY,NY 10021
212-517-8600
http://www.colonsurgeryinfo.com/

Dr.Dana Launer, Dr Michael Jonathan Worsey and Dr.Gail Salganic
9850 Genesee Ave., LaJolla,CA 92037
858-558-2272
launer.dana@scrippshealth.org
http://www.advancedsurgical-sd...view&id=22&Itemid=32

Dr. Donald Schiller
9808 Venice Blvd, Ste 603, Culver City Ca 90232
310-204-4565
http://www.ileostomy-surgery.com

Dr.Feza Remzi and Dr. David Dietz
Cleveland Clinic
9500 Euclid Avenue,Cleveland, OH 44195
800 -223-2273
http://www.ccf.org
http://my.clevelandclinic.org/...ry/3/Staff_2393.aspx
http://my.clevelandclinic.org/...ry/5/Staff_4088.aspx

Dr. Alex Ky-Miyasaka
Mt. Sinai
5 E. 98th St #11,NY,NY 10029
212-241-3547
http://www.mountsinai.org/Find...842&officeDrawer=pat

Dr.David Sung
1260 15th St.,Santa Monica, CA
310-395-6123

Dr. Ernest Rehnke
T he Palms of Pasadena Campus BCIR Unit
Petersburg , FL 33705
800-336-0789
http://www.bcir.com

Dr Paul Williamson
110 W. Underwood St.,Orlando, FL 32806
407-422-3790
http://www.crcorlando.com

Dr. Rolando Rolandelli
95 Madison Ave., Ste 304C, Morristown ,NJ 07960
973-971-4105 or 973-971-7200
http://www.dr-rolandelli.com/m...team/rolandelli.html

Dr.Robert Jacobson
3409 Worth Street, #500 Dallas, TX 75246
(214) 824-1730‎
http://www.baylorhealth.com/Ph...sician.aspx?pid=2146

Dr.Sandy Fogel
213 McClanahan St SW, #404, Roanoke,VA 24014
540-342-6346
http://www.carilionclinic.org/...ysician&phyID=135028

Dr. David Beck
1514 Jefferson Hwy.,New Orleans, LA
800-348-7875(outside LA)1-800-874-8984
http://www.ochsner.org

Dr. Susan Galandiuk(learned from Dr Fazio)
University of Louisville Colon & Rectal Surgery
550 S. Jackson Street, Louisville, KY 40202
502-852-4568
susan.galandiuk@louisville.edu
http://www.louisvillesurgery.c...ctors/galandiuk.html

Dr. Guy R. Orangio
Atlanta, GA
770-995-9528
http://www.gcrsa.com

OUTSIDE US:

Dr. Zane Cohen, Dr. Robin McLeod
Toronto, Canada
416-586-8346
http://www.mountsinai.on.ca/ca...-cohen-m-d-f-r-c-s-c
http://www.mountsinai.on.ca/ca...mcleod-m-d-f-r-c-s-c

Professor Neil Mortensen
Dept Colorectal Surgery
John Radcliffe Hospital
Oxford OX3 9TATel +44 (0)1865 220926
email: Neil.Mortensen@nds.ox.ac.uk

Mr David Bartolo
Western General Hospital
Colorectal Surgury
Edinburgh, UK
0131 537 1000 (Main Hospital Number - ask for his sec)
http://www.surgery.ed.ac.uk/sp...ctology/bartolo.html

Dr Leif Hulten, Goteborg , Sweden (retired but teaching) leif.hulten@surgery.gu.se

Prof. Helge E. Myrvold, Trondheim, Norway +47 95055225 (retired but in the loop)

The link from another forum... http://j-pouch.org/eve/forums/a/tpc/f/5 ... m/23110816

Does anyone know of a doctor near Iowa that does the K pouch surgery. Maybe at Mayo in Minnesota?

I CAN'T BELIEVE SOMEONE ELSE IS HAVING THE SAME PROBLEM, FINDING A DOCTOR IN THE NEW JERSEY AREA FAMILIAR WITH THE KOCH POUCH.
I HAD AN ILLEOSTOMY PERFORMED WHILE I WAS PREGNANT IN 1971. IN 1975 I HAD THE KOCH POUCH PROCEDURE PERFORMED BY DR. ROBERT RUBIN
AT MUHLENBURG HOSPITAL, PLAINFIELD NJ. I WAS AWARE THAT HE PERFORMED MORE THAN A DOZEN OF THESE PROCEDURES. I HAD MORE THAN 8 REVISIONS AND THEN IN 1991 HE REVISED MY STOMA WHICH HAD CORRECTED MY LEAKAGE PROBLEM..THE PROBLEM IS HE HAD RETIRED AND HIS PRACTICE CAN'T EVEN RECOMMEND A DOCTOR FAMILIAR WITH THIS PROCEDURE. ALTHOUGH I THANKFULLY HAVE NOT HAD ANY ISSUES OVER THE PAST SINCE MY REVISION, I AM NOW 62 YEARS OLD AND WORRY THAT I MAY NEED MEDICAL ASSISTANCE IN THE FUTURE. I WOULD LOVE TO BE CONTACTED BY ANYONE WHOM MAY HAVE BEEN UNDER HIS CARE OR BE GIVEN THE NAME OF A PHYSICIAN IN THE AREA FAMILIAR WITH THIS PROCEDURE

I see the doctors I would suggest at Mt Sinai in Toronto for anyone in Canada are already here including my surgeon, much as I hate my surgeon from my personal experience with her and her bumbling assistant, Mt Sinai would be the very best place in Canada for this and I used to know someone in Alberta who came to Toronto specifically to get Zane Cohen to do this surgery as he trained with Dr. Koch. He is the Chief Surgeon at Mt Sinai and Dr McLeod is Head of General surgery.

Mary