Hi! Haven’t posted in sometime, been getting settled in Florida and loving it. I’ve had my Jpouch since 1994, 24 years! I still have diarrhea constantly unless on antibiotics, but it only helps a few days, or other heavy medication in hospitals. I take pepto daily but still feel dehydrated from going to the bathroom 20 Xs a day! Need a GI in my area if anyone has any referrals for GIs that work with Jpouch patients. 

Thank you!

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Hi BarbieG,

Although I cannot assist in answering your question, I am nevertheless interested in the response, for the reason that my parents just relocated to an assisted living facility in Bradenton, Florida, just north of Sarasota. I am basically all they have as far as immediate family and my own relocation to this area, in the future, is a possibility. I am very familiar with the area as my family has owned property in both Sarasota and Bradenton since the early 1970s. I have been traveling there a couple times a year for very many years.

There are some logistical issues to me moving from CT to FL, and one of them happens to be that I am now in a situation where I have a great medical support apparatus locally and I don’t know what is available down there, as far as the type of unusual and sophisticated care that we J Pouchers need.

Keep us posted on your doings and good luck with your inquiry.

Hello, I had my jpouch done in 1999,19 years ago. I live in southwest Fl, near Punta Gorda.  I travel to Cleveland Clinic  on the east coast of Florida, Weston. I had my surgery there , and I travel there for check ups, problems. It’s about 2 1/2 hours from my home but they are experts , and they are worth the drive. I honestly have looked for a GI closer to home, Naples, fort Myers, Sarasota and have not found one I feel has the experience & knowledge about Jpouch.  I do not mean that there are not excellent physicians here in this part of a Florida, there definitely is, in fact my husband is a physician here in town.  But the expertise I find at Cleveland clinic in Weston Fl is where they deal with hundreds , maybe thousands of jpouch surgeries. That’s why I went there 19 years ago for my initial surgery, and continue to drive there when needed. I wish I could find that here closer to home, if you do, let me know. Good luck. 

I am in Naples and go to Dr Raymond Phillips for my  Barnett pouch (k pouch). He even did a scope on me. He seems to know about j-pouches and he is the leader of our local chrons colitis support group. (We meet once a month, I am the only one with a pouch!!)

i also go to cleveLeland clinic in Cleveland once a yr to Dr. shen, who is the absolute expert on pouch problems. I have also been to Weston to see Dr. Weiss.

i have had several issues, which is why I have seen all these drs. If you are not having any unusual problems, I would recommend Dr. Phillips. He,s located near the coastland mall.

Thank you , 

ill keep Dr. Shen in mind if I decide to get a main Dr to see for check ups . I usually just take care of myself till I have issues that I can't manage myself , such as a blockage that won't clear or pouchitis that won't respond to meds.  Then I go see Dr Weiss , he performed my surgery , had been there for all my problems , blockages ... etc.  a year ago I went for a a surgery to remove scar tissue we thought , I had a mild blockage for months then increased to where I could barely eat without pain , swelling in old ostomy site. Dr Weiss did my surgery , turned out that when he cut in , little scar tissue but the intestine in that area was twisted . He untwisted it, and I've been doing great for over a year now . Just a few weeks ago I felt pain & now same symptoms , same area ... I can't just go every time something happens. It's not too bad so I'm dealing with it, hoping it untwists in its own , lots of fluids , small meals .  

Ill keep Dr Shen in mind , thank you for the information . 

I certainly hope it clears up.

I know the dreaded feeling of driving to Weston or getting on a plane to Cleveland. Dr. shen is not a surgeon, but I think he has about 2000 pouch patients, so he knows and has seen many pouch issues.

Good luck. BTW, Shen usually has a 4month wait, but since you are already in the CC system, it could be faster for you.

I'm sorry , I just reread your message . I thought Dr Shen was here in Fl. I usually never travel to Ohio.  

So, you recommend Dr. Phillips in Naples. Is he a GI physician or a surgeon . I'll look him up . I see Dr Weiss when I have to seek help but would love to have a Dr closer to home for just routine visits. Thank you for your time to answer me back .  

Thank you all for the referrals. Still hoping I can find a good GI closer to Sarasota, not having any really difficult problems now except diarrhea. But a two and a half hour drive isn’t out of the question for the best doctors at The Cleveland Clinic in Weston

Thanks for the post BarbieG and thanks to all who responded.  I live in Orlando and my GI doc recently retired.  I've been looking for a doc with pouch experience but thus far have come up empty.  I'm definitely open to traveling to Weston or Naples and will be scheduling with Drs Weiss or Phillips.

Take Care

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