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I have a Kock pouch since the late 1970's (done when I was a teenager), and based on many MANY incidents of intestinal obstructions, I'm pretty sure I have extensive internal adhesions/scar tissue that likely will be encountered by any surgeon who is trying to remove my gallbladder.

Of course I hope my gallbladder could be remove laparoscopically, but due to the likely extensive internal adhesions/scar tissue, I'm not sure if it can be.

Anyway, the few surgeons who I have consulted who are those with expertise in continent pouches like J-pouch (if not K-pouch), all are unwilling to do a gallbladder removal....I think because the renumeration they get for that from the insurance companies is too little, compared to other surgeries they use their time for (the complex surgeries to do J-pouches etc.).

But I'm so very scared that a general surgeon who has never even seen a Kock pouch might end up touching/messing up my Kock pouch, and/or might not be skilled enough with dealing with all the internal adhesions/scar tissue they are likely to encounter.

And I'm also concerned that maybe a "better" surgeon could manage to do it laparoscopically rather than open surgery-- I'm really afraid of how much more extensive and worse new adhesions/scar tissue may be after open surgery. I seem to be a person who always makes an extreme amount of adhesions/scar tissue every time I am cut, compared to most other typical people who get the same cut.

I'm willing to travel if I need to, but I live in northern NJ.  Does anyone have any recommendations of who would be a great surgeon for this, and willing to do gallbladder removal?

[Background why I am inquiring:  Currently my gallbladder seems otherwise healthy, but it has a big stone in it that has been gradually growing and I have had one moderate gallbladder attack 5 years ago, and a second moderate gallbladder attack a few days ago, both resolving within several hours after going to ER - but extremely painful and scary (mimicking a heart attack) for those hours when it was happening.  I'm otherwise pretty healthy, healthy weight, my Kock pouch functions perfectly. But I'm 59-1/2 years old and it is feeling inevitable that ultimately the gallbladder will need to come out, and as I get older and older it may be more difficult to go through and recover from the gallbladder removal surgery, especially if it ends up having to be open surgery instead of laparoscopic.]

Please share any experience, advice, warning, or suggestion you have!!

And especially if you can recommend a surgeon who you think is best and would do the surgery!!

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I had mine removed by a laparoscopic surgeon but here in France.

Yes, whenever possible it gives a much better post-op result. Only 3 days in the hospital, no big scar or dealing with a large opening and all of the risks, a faster healing time etc but your guts are still your guts.

You will have pain, lots of bloating (they fill you with air and it sticks around for a while! hurts a lot!

I do not heal well so this is my best option...if you create scar tissue, adhesions, they may not be able to do it. I have a mostly clean abdomen...so they do not have to cut through scar tissue for hours on end like with some other patients. They still have to deal with some and as my surgeon said, more than 2 hours of removing adhesions is too much for lap surgery. Even if you find a surgeon who does Lap surgery, they may have to open you up if there are too many adhesions.

This might not be what you want to hear but surgeons need to be sure that they are not putting you or your body in undo danger.

I always get the warning, "we might have to open you up, you might lose your pouch" every single time...not my favorite pre-op reassurance!

Good luck.

My advice is to only use the best and most experienced surgeon, no matter what.

Sharon

skn69

I waited way too long to have my surgery...my gallbladder was "hot"...extremely big and full of 1 quart of black pus and bile.

A 1 hour surgery turned into a 3.5 hour rescue mission that had my surgeon sweating.

He did it laparoscopically but worked hard not to spill any bile into the abdomen.

I do not suggest waiting toi long when it it completely plugged up.

It should have been removed years before.

The post op took about a week.

No long term side effects.

skn69

Cindy,

My experience is with a K pouch (almost 42 years). There are a small number of pouch surgeons that are experts who operate on pouches very frequently and are skilled enough with the precision that is required.
They would also be experts with J pouches.

In New York City: Dr. Ravi Kiran

In Cleveland, Ohio:

Dr. David Dietz and Dr. Jennifer Miller-Ocuin practice together at University Hospital (not far from Cleveland Clinic).

Also in Cleveland, is Cleveland Clinic. They have several surgeons, including Dr. Scott Steele  

In Winston-Salem, North Carolina is Dr. Jean Ashburn.

In Rochester, Minnesota at Mayo Clinic is Dr. Sherif Shawki.

Most of these surgeons came through Cleveland Clinic and they all know each other .
They have all spoke at the Quality of Life annual conferences,

some offer virtual appointments

One good thing is that the gall bladder is pretty high up. I had mine out a few years after my K pouch surgery  so that was before the popularity of new surgical techniques, so I have a a scar high on my mid abdomen from .
best of luck- if I can help in any way, just reach out  

KS

Thank you so much! I have been in touch with Dr. Dietz’s office and they recommended a general surgeon who has done K pouch gall bladders. I had my k pouch done at Cleveland Clinic in 1981 with the late Dr. Victor Fazio. Now that I’m getting older it is a little disconcerting to know that most medical professionals are quite unfamiliar with an ileal pouch and how that might affect medical interventions.

Thank you so much for the information and your help!

C

dr. Dietz did my k in 2015, when he was at clev. clinic.  since then both kiren and Shen, who has scoped me, have commented on the excellent pouch creation.  i'm torn as to whether to see. him in nyc or Shen.  nice to have choice between such great docs.  i googled langone/dietz and nothing popped up.  hum....

ljz--nor do i have experience at Langone.  

wonder if he is bringing his llamas with him!   peace, jan

J

I’m don’t think Dr. Dietz can be officially listed at Langone until he completes the credentialing process that dr’s go through when they move to hospitals in another state. Based on Facebook comments, it should happen in October and folks who have been in the queue are getting ready to schedule appointments as soon as they open up. He has already communicated his scheduler’s name and contact info to existing patients.

KS

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