Had my KP done at Mount Sinai in NYC (Drs. Gelernt and Kreel) in November 1974. I would be interested in finding anyone with a perfectly functioning KP for as long. Happy 44th to me!
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How wonderful!! It’s great to hear that they can last that long! Hope you have many more years- endless- of j pouch success!
Excellent year! And many many many more excellent years to come. Kudos to you.
Congrats! I have had my K-pouch for 42 years. Bauer did mine at Mt. Sinai in NYC.
Wish I had mine by the late Gelernt. He was the best. He studied with Dr. Nils Koch in Sweden - 1969. My pouch leaks a bit - I've had 1 or 2 revisions.
I saw Dr. Bauer this past July because I thought I was having an issue with my KP. Had to fly to NYC (Mt Sinai) because there are NO colorectal surgeons in Colorado who are familiar with the KP. My KP turned out to be perfect...problem was a kidney stone...flew back to Denver and had lithotrypsy. Congrats on your 42 years!
Congratulations!
My K Pouch was 36 years old on Nov. 9th. It was done by Dr. Fishbein at Johns Hopkins in 1982. I was only 21 years old. It worked perfectly until the last year and half, but I’m hoping to get back on track with it. I’m not giving up on it yet.
Hi All!
I am so happy to have found this group! I had a k pouch done by Dr. Gelernt at Mt. Sinai 39 years ago because of UC. My pouch worked great for so long! I had 3 children. It was fine. I had a case of pouchitis once years ago. Then, over the past couple of years, my pouch was more irritable. And now I’ve been fighting pouchitis and the pouch will leak gas at times. I feel like I have 2 things going on. 1. I’m fighting pouchitis. Which actually can get you very sick and give you Crohn’s type symptoms which included terrible joint pain. 2. Even though I’ve been scoped, Dr. Rubin in NYC cannot see a problem with the nipple valve. However... I’m thinking I will need a revision at some point because I’m used to a functioning k pouch and I really cannot function if gas is going to leak at any point. Even with the pouchitis quieted down the pouch leaks gas. I went to see Dr. Bauer at the beginning of all of this, before I even go scoped, but he said if he had to do a k pouch revision he would change the location of my pouch to the other side of my abdomen, etc, etc. It scared the blank out of me. It seemed like a big surgery rather than a small revision. Over 30 years ago, when Dr. Gelernt did a couple of revisions he never changed the location of the k pouch opening. So... there you have it and thanks for listening. I’ve felt pretty alone with this for a very long time. I’m just not sure what to do. Also- when I saw Dr. Bauer he said “oh, we never guarantee that gas won’t escape from the pouch.” So...Do I go back to Bauer? Do I go try to get a BCIR? I like Dr Bauer and wish Dr. Gelernt was still around. I’d go to him in a second. Thanks for any advice!
I have not had any serious issues but Dr. Bauer has been responsive with any issues or questions. He has left Dr. Gorfine at Manhattan Surgical Associates.
Hi. Yes. Dr. Bauer is extremely knowledgeable and responsive! He’s top notch for sure. But I wasn’t sure about the idea that it is acceptable at all for gas to leak out from a k pouch sometimes and that the site would have to be moved to the other side if I had a revision. Those aren’t really acceptable conditions for me at this time. So... I’m wondering about the BCIR surgery and others who have had recent k pouch revisions and how they are working? Thanks.
Based on my two revisions in the last year and my daily struggles now, if I just had gas leaking and no stool, I wouldn’t do anything. Too much of a chance for complications. Just my opinion.
Thanks, Kim. Who did your revisions?
I definitely hear that. To go back into surgery after everything we have been through with surgeries in my life, is a huge deal for me. I also know there is recovery time and pain and risk. It’s hard because, I like just wearing a patch on my side. It has given me freedom over the past 35 years. But now, I need to put a bag on my side if I’m going to class, on a long car ride or even out for a whole day because...gas can and will escape at any time. You can’t live just having gas leak out at any time like that anywhere. That’s not ok. So- I either deal with what I have (wear a bag in many public situations) or try to take the surgical risk and restore my k pouch nipple valve to the way it was.
This gives me great hope as I prepare to get a KP thanks everyone for sharing
Emily...Who is doing yours?
Mine is being done by Satish Warrier and Phillip Smart in Melbourne Australia
Wishing you the best!!
Emily – welcome to our k pouch klub! When is your surgery. Keep us posted please. We’ll be here for you to answer questions and provide support. Janet
Great Group!!!!
Bodoni posted:Congrats! I have had my K-pouch for 42 years. Bauer did mine at Mt. Sinai in NYC.
Wish I had mine by the late Gelernt. He was the best. He studied with Dr. Nils Koch in Sweden - 1969. My pouch leaks a bit - I've had 1 or 2 revisions.
That interesting. I had my K Pouch 44 years ago in UK.
learned a lot over these years but my health is good.
Bodoni posted:Congrats! I have had my K-pouch for 42 years. Bauer did mine at Mt. Sinai in NYC.
Wish I had mine by the late Gelernt. He was the best. He studied with Dr. Nils Koch in Sweden - 1969. My pouch leaks a bit - I've had 1 or 2 revisions.
That interesting. I had my K Pouch 44 years ago in UK.
learned a lot over these years but my health is good.