Hi! Some Background: I had Kpouch surgery back in 2011 by Dr Beck at Oschner in New Orleans. I was 21 at the time and can’t say enough how much the surgery improved my quality of life. I’m currently 30yo and have since had 2 little boys, 3yo and 18mo. My pouch was fine during both pregnancies, but after my second son was born I started having issues with it not being as continent a as it should be. Sometimes it’s just a small amount leaking, but often it’s a lot. This isn’t an every day thing, and there’s really no rhyme or reason to it-it’s just very inconvenient and annoying. All that being said-I’d like to get to the bottom of what the issue is but my GI has no idea of anyone who deals with Kpouches. I’ve reviewed the list of surgeons, but I’m looking to see if anyone has any experience with a surgeon in the south east. Like I said Dr Beck in NOLA did my initial surgery, but I cannot get ahold of them to get answers and I don’t believe he’s practicing anymore. I’d especially love to hear from anyone who has experience with the surgeon in either Atlanta or Orlando-those are closest to me (I live in north FL). Thanks so much!!
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I would recommend: typing colon surgeon on google and calling every colon surgeon in your area and reading the reviews of the doctor, when you call the offices- ask and talk to the manager and ask them to send the surgeons a message if they are experienced with K-pouches. A lot of people may not know what K-pouches are since they mainly deal with ileostomies and J-pouches- shoot, even a lot of medical people do not know what a J-pouch is. I would definitely ask the manager before coming in: that keeps you from wasting your time, wasting a co-pay, and its good watching out for your health. I did those tactics recently for my J-pouch and it worked out great. Ask questions before coming in. I hope everything works out for you
The Baycare System in FLorida is pretty good! I got everything done there! From diagnosis to surgery. I would definitely recommend any Colon Surgeon in the Baycare System (St. Joseph Hospital)
Are you a member of the BCIR or Kock & BCIR Continent Pouchers United groups on Facebook? Or a member of the Quality Life Association (QLA)? These are both sources of information.
I am in Virginia. I have used Dr. Jean Ashburn and Dr. Ravi Kiran in the last few years. Ashburn is at Wake Forest Baptist Medical Center in Winston-Salem, NC and Kiran is at Columbia-New York Presbyterian in NY city. Dr. Kiran’s practice sees a higher number of K pouch patients.
There are some doctors in the southeast that are knowledgeable and will scope a K pouch, but the number of surgeons is very limited. Other options are the Cleveland Clinic and the Mayo Clinic.
Tough situation when a K pouch doctor isn’t immediately available. I too go to Dr.Kiran in NYC And would recommend him. Traveling is of course difficult with Covid and two young kids.
unfortunately I don’t have an answer but do you have some suggestions. First, go to the K Pouch Korner on this site and look at the top post. It has a master list of K and BRIC surgeons. also search the site for any and all of the symptoms that you have as you may be able to narrow down the problem. That would allow you to call a surgeon Or an ostomy nurse somewhat close in your area and see if they can deal with your problem. When searching the site seek out Sharon’s comments. She is extremely knowledgeable, helpful and has had a K for decades. You might try googling the Doctor who initially did your surgery. Perhaps he moved.
If you find a surgeon that is not on the list please add it. Keep us posted on your progress. Stay well, Jan
LAUREN - 4pm we are moving to FLA IN 3-4 months. We live outside Chicago and have had excellent systems and doctors. I heard FLA doesn’t have the best system. I have a Kpouch and many other issues due to my former UC. I have AVN.
Kidney issues, iron issues, absorbing issues...anyway, I need a good healthcare system on gulf side - anywhere but thinking near Pensacola. Thank you for all your help.
@Kara Fred posted:LAUREN - 4pm we are moving to FLA IN 3-4 months. We live outside Chicago and have had excellent systems and doctors. I heard FLA doesn’t have the best system. I have a Kpouch and many other issues due to my former UC. I have AVN.
Kidney issues, iron issues, absorbing issues...anyway, I need a good healthcare system on gulf side - anywhere but thinking near Pensacola. Thank you for all your help.
Sorry for your suffering! The only place I have the most experience with is the Baycare System (St. Joseph Hospital), that is the most experience I have had. Hopefully that might help you if you choose it. And you are welcome
So far, I have been in Florida for 22years and the health system is pretty good. You may have to get 2nd opinions when it comes to some doctors though lol.
Krev,Kara,and All,
I am in S Florida, Ft. Lauderdale. I spent 4 days in Cleveland Clinic Weston with Cdiff the first of November. Only one Dr even knew what a Kpouch was. They were honest and asked me about what I needed.They were great to me, and lots came to take a look see, but there isn’t anywhere around down here for the K, Jpouchs, yes, plenty of experience it that.
BTW Cleveland Clinic in Ohio doesn’t presently have a Kpouch surgeon . Dr David Dietz is now at University Hospitals also in Cleveland. We live up there half of the year and I see him and also see the gastro department at CCF presently.
My Kpouch is 3 years old.
Good luck on your move down Kara
Janice
Hi Krev0412! I can't remember how I corresponded directly with you, so I think this will be on the open forum. I had the surgery I told you about a little more than 2 weeks ago. There were complications (of course); however, I had a follow-up with the doctor yesterday. She is pleased with the ways things look. It is probably too early to say the "leakage" problem is fixed permanently; however, fixing the hernias and some repositioning of the pouch seems to have been the "ticket." I mentioned you to my surgeon and she would be happy to talk to you. If you would like her contact information in Winston-Salem, NC, please let me know! Take care! Bill Cobelli (wcobelli@yahoo.com)
@Krev0412 I agree with Janice, stick with the Cleveland Clinic if your in Florida, they are very good but I prefer to fly back to NYC for my GI doc.
I find the regular medical system here in florida not very good.
This is a reply to JanW2 and ytcrockpot: This past Tuesday my surgeon confirmed that there is no surgeon in FL or OH that she is aware of. Anyone who needs a K-Pouch specialist can contact her: Jean Ashburn, MD at Wake Forest Baptist Hospital in Winston-Salem, NC. She has an excellent reputation, which I can confirm.
Ohio: Dr. David Dietz at University Hospital, very close to the Cleveland Clinic.
and Dr. Scott Steele at the Cleveland Clinic. Also Dr. Alessandra Gasior in Columbus. She is helping some patients, depending on what they need.
there is a list of dr’s and surgeons on the Quality of Life webpage.
www.qla-ostomy.org
Thanks, KimS! Good to know.