good luck
I am updating a previous post here: I DO NOT recommend Dr Pokala Kiran and I strongly suggest that you AVOID HIM at all costs. If you want details, feel free to PM me.
I agree 100%.
He did my last revision in August 2019 and I’m doing great!
Dr Earnest Rhenke has retired
Dr. David Sung of Santa Monica California is deceased. Wonderful surgeon!
Do just about all colorectal surgeons do Kpouch surgeries??? I am not sure
Lauren of Emerald City- only a very small number of colorectal surgeons perform K pouch surgery. Most of them prefer J pouch surgery.
I meant to say- J pouch surgery or conventional Brooke Ileostomy surgery.
@Kim S posted:Lauren of Emerald City- only a very small number of colorectal surgeons perform K pouch surgery. Most of them prefer J pouch surgery.
Thank-you 
J-pouch surgery is an option for some but not all patients. The surgeon who removed my colon cut too much tissue so a J-pouch was not an option. I am very, very happy with my K-pouch, though.
There are maybe five surgeons in the world who are highly trained and skilled enough to create continent ostomies like K-pouches and BCIRs. WARNING: there are a LOT of unscrupulous surgeons who CLAIM that they know how to do it, or that they can do repairs, and instead damage the continent ostomy or even REMOVE it. PLEASE be careful when choosing a surgeon. Check these boards for RECENT recommendations from patients who have actually been treated by a surgeon and endorse his/her surgical skills and post-surgical care.
@sldrx posted:J-pouch surgery is an option for some but not all patients. The surgeon who removed my colon cut too much tissue so a J-pouch was not an option. I am very, very happy with my K-pouch, though, and again highly recommend
Dr Kiran at New York-Presbyterian/Columbia University Hospital
(212) 342-1155There are maybe five surgeons in the world who are highly trained and skilled enough to create continent ostomies like K-pouches and BCIRs. WARNING: there are a LOT of unscrupulous surgeons who CLAIM that they know how to do it, or that they can do repairs, and instead damage the continent ostomy or even REMOVE it. PLEASE be careful when choosing a surgeon. Check these boards for RECENT recommendations from patients who have actually been treated by a surgeon and endorse his/her surgical skills and post-surgical care.
Thank-you
Were you mad originally at the surgeon that cut too much tissue off???
The surgeon who cut off too much tissue knew I had a prime malpractice lawsuit on my hands... so (without mentioning 'lawsuit') he offered to send me to his surgical mentor — who happened to be the head of colorectal surgery at the Cleveland Clinic and the top K-pouch surgeon in the world, Victor Fazio. I would never have found out about K-pouches if this idiot surgeon hadn't been trying to save himself from a lawsuit! And I could not have gotten luckier -- the late Dr Fazio is a legend who other colorectal surgeons talk about with reverence and awe. So a disaster turned into a miracle. Yes, I was angry but I was also choosing my battles carefully. I'd been so sick --down to 75 pounds at one point -- and I had to focus on the future.
@sldrx posted:The surgeon who cut off too much tissue knew I had a prime malpractice lawsuit on my hands... so (without mentioning 'lawsuit') he offered to send me to his surgical mentor — who happened to be the head of colorectal surgery at the Cleveland Clinic and the top K-pouch surgeon in the world, Victor Fazio. I would never have found out about K-pouches if this idiot surgeon hadn't been trying to save himself from a lawsuit! And I could not have gotten luckier -- the late Dr Fazio is a legend who other colorectal surgeons talk about with reverence and awe. So a disaster turned into a miracle. Yes, I was angry but I was also choosing my battles carefully. I'd been so sick --down to 75 pounds at one point -- and I had to focus on the future. The surgeon I keep recommending (Dr Kiran) was trained by Dr Fazio himself.
Dr Kiran at New York-Presbyterian/Columbia University Hospital
(212) 342-1155
LOL, you are funny! I love it! I also love your optimism! You must be a really happy person! We all can learn a lot from you. You must be stress-free too.
I hear K-pouches are a great alternative to a ileostomy. Its probably hard to find a gastro that is experienced with scoping it for check-ups.
How often do you have to empty out your K-pouch??? Every 3-4 hours right?
And how often do you have to change catheters???
It must be hard to clean the catheters and taking it with you wherever you go too. You guys probably keep the catheter in a bag to take it with you when you go out.
YES, I HIGHLY HIGHLY recommend the K-pouch! There was a whole year between the removal of my colon and my K-pouch surgery when I wore an ostomy bag so I know what that entails. Frankly, I hated wearing the bags and emptying them and all that went with it. The K-pouch has been one of the greatest miracles of my life and I post here and recommend my surgeon so that people know they have options that most surgeons won't even mention because they don't do the surgery themselves.
How often I empty the pouch depends entirely on what and when I eat and drink, and if I'm having a busy day and don't want to have to empty her frequently, I can adjust what I put into her -- less gassy foods, less bulky salads.
Catheters will be covered by your medical insurance and you just rinse them out in the sink when you're done intubating. They're made of flexible silicone, and they stay pretty clean for weeks but you can change them as often as you want. I keep one in a baggie in my handbag with a packet of lubricant so I can empty her 'on the road.'
Knowing what I know with 18 years of experience I would definitely get this surgery again even if I lived a few hours away from the doctor I needed to see if I had any problems. I traveled to Cleveland twice to get this surgery and still think it was one of the BEST decisions I ever made.
Agree about the expertise of Dr. Kiran.
He revised my K pouch in 2019 and this year it will be 39 years old.
@sldrx posted:YES, I HIGHLY HIGHLY recommend the K-pouch! There was a whole year between the removal of my colon and my K-pouch surgery when I wore an ostomy bag so I know what that entails. Frankly, I hated wearing the bags and emptying them and all that went with it. The K-pouch has been one of the greatest miracles of my life and I post here and recommend my surgeon so that people know they have options that most surgeons won't even mention because they don't do the surgery themselves.
How often I empty the pouch depends entirely on what and when I eat and drink, and if I'm having a busy day and don't want to have to empty her frequently, I can adjust what I put into her -- less gassy foods, less bulky salads.
Catheters will be covered by your medical insurance and you just rinse them out in the sink when you're done intubating. They're made of flexible silicone, and they stay pretty clean for weeks but you can change them as often as you want. I keep one in a baggie in my handbag with a packet of lubricant so I can empty her 'on the road.'
I have annual checkups with Dr Kiran in NYC, where I live. (Dr Kiran at New York-Presbyterian/Columbia University Hospital (212) 342-1155) I had no problems for years and years so I don't know that you really need to have an annual checkup -- but knowing what I know with 18 years of experience I would definitely get this surgery again even if I lived a few hours away from the doctor I needed to see if I had any problems. I traveled to Cleveland twice to get this surgery and still think it was one of the BEST decisions I ever made.
WOW thank-you for all of that insight!
I believe its recommended for us "POUCH" people to get scoped every 1-3 years.
I love how you call your K-pouch "HER", I do that too with my J-pouch. Have you named your K-pouch???
She's called The Princess, Miss Pouch. She's 'the princess' because she can have ANYTHING SHE WANTS. Miss Pouch is a miracle and very, very precious. I consider myself incredibly lucky and I do my best to take very, very good care of her.
@sldrx posted:She's called The Princess, Miss Pouch. She's 'the princess' because she can have ANYTHING SHE WANTS. Miss Pouch is a miracle and very, very precious. I consider myself incredibly lucky and I do my best to take very, very good care of her.
LOVE LOVE THIS!!!! Cool name!!!! The Princess Miss Pouch is a perfect name
I named my J-pouch, "The Emerald City Of OZ". I am a huge WIzard of OZ fan, I read all 15 books. Emerald City is a magical city and so is my pouch. I call her EMMIE for short
An update: Prof Jack Mackay, listed for Australia, has passed away.
@Kushami posted:An update: Prof Jack Mackay, listed for Australia, has passed away.
Sorry to hear that!
Just posted urgent message to everyone in K-pouch group urgently asking for info on Dr Dietz in Cleveland. Did he do your K-pouch? Do you still see him?
I have a 19 year old K-pouch that needs work but I need to know whether I can trust Dr Dietz or should I look elsewhere.
Any info you can provide will be greatly appreciated. Reply as Private Message if appropriate.
Zane Cohen is retired and no one took over in London, ON, when the doc there retired.
Dr Robert Jacobson has retired and none of the drs that took his place know anything about the KPouch He was my Dr and was great.
Updated after contacting surgeons:
Quality Life Association has two surgeons listed in Melbourne, Australia.
Mr Philip Smart
Email from surgeon states: Can help patients who already have a continent ostomy, but does not create them at time of enquiring (2023).
Mr Satish Warrier
(Note: His name is spelled incorrectly as “Warriner” on the QLA website. It’s definitely “Warrier”.)
https://www.epworth.org.au/who...or/mr-satish-warrier
Waiting to hear back
(The QLA list includes surgeons who will treat patients who need help with a continent ostomy, but don’t actually create them, so being on the list doesn’t necessarily mean they do the initial surgery.)
Dr Schiller is retired.