Recommendations for experienced J-Pouch G/I specialist in Seattle, Cleveland, Florida or St. Louis

I do not have direct experience with this doctor. I just know she worked with Steven Medwell, the crème de la crème of J-Pouch surgeons in Seattle. Her name is Laura Gladstone and she is at Optus, Northgate Plaza. Google “Seattle best doctors.” Seattle Met and Seattle Magazine publish top doctors for every year. If I am correct, they get recommendations from other doctors. Of course, don’t base your whole choice on this. It is a beginning.

I found my GI doc through the magazines. Her name is Diane Bai and she is in Tacoma. Her name was in the magazines every year so I gave her a try. She is amazing.

Thank you @kta !

Any time!

For colon and rectal surgery with j-pouch experience is Dr Rodney Kratz (old photo) at Swedish. Some of his patients, like me, are Dr B orphans. He's also a top rated doctor.
I have a j-pouch due to FAP and Dr Kratz has done 2 surgeries this year for 2 anal fistulas + branches & 2 abscesses related to scar tissue where my pouch is attached. (I'm a very complex case I guess).
I had my setons (drains) removed last Friday so I'm impatiently healing.
I did a 'dial for a surgeon', most had an 8 month wait and he had an opening the next week. I got lucky with getting in to him. His surgery slot wait is 4-6 weeks.

My other suggestion is Dr Stephen Ruylak at Fred Hutch/UWA. They had a 8 month wait but I played my FAP card and was moved up.  I recently had an EGD with him and will have a pouchoscopy with him once my fistulas heal. I'm not sure what the criteria to get an appointment, Dr Ruylak studies FAP which got me in the door.

Overall, I've had really good luck at Swedish, the doctors don't shy away from complicated people like us.

My other suggestion is Mayo Clinic, I had my surgeries in Rochester and an AK  friend had an IPA surgery there last summer. They do many, many pouch related surgeries and can share data on outcomes. They have a clinic in Jacksonville, FL.

Thanks KTA for your suggestion, learning there are more j-pouch surgeons in seattle is wonderful news!

Best of luck on your doctor search!
Cheryl

@Cheryll Thank you so much for taking the time to provide me with your surgeon, GI and Mayo recommendations. I understand the GI doc may not take me but I will call their office to check.  My j-pouch came about as a result of my first colonoscopy revealing over 40 polyps.  I was not tested for FAP at the time, but learned last spring I do not have the genetic markers for FAP. I had one emergency rebuild of my jpouch done by an extremely competent general surgeon on call at Swedish. I am currently part way through a series of diagnostic tests to figure out why I am suddenly constipated after 17 years of diarrhea, so there may be a need for a surgeon in my future. Good to know about Dr. Kratz. Thank you so much!

Good luck, finding doctors and answers isn't easy.

I had constipation or more solid poop which was because the scar tissue at the bottom pouch opening was very small. With us, there are a lot of reasons it could happen.

@Cheryll Ah, so true. That darn scar tissue is a bear that disrupts everything until it is addressed. No. Fun. Did you have surgery to resolve the problem?

Not yet, I had my 1st surgery late july to put in setons and then#2 last week to remove the 4 setons. I won't know if the fistulas heal, he said it's a 60% chance I'll heal, if not, surgery #3. I do feel better and I've been stretching my scar tissue so hopefully that helps reduce inflammation.

I too had issues pooping, it was mainly due to the scar tissue/small opening and the surgeon said that my body wasn't able to function properly to move the poop out of me.

Is there anything in specific that you need for the J-pouch? Like a redo for example?

@Mary2017 Good question. I would like to be in the care of a G/I doc who is well versed in jpouch issues, ideally a G/I doc and/or clinic specializing in patients with jpouches (if such a person or clinic exists?). As for a surgeon, I am not currently in need of one, but I am prone to small bowel obstructions so it would be helpful to  establish a relationship with a j-pouch surgeon if/when the need arises for another rebuild. Thanks for asking.

@SeattleJane posted:

@Mary2017 Good question. I would like to be in the care of a G/I doc who is well versed in jpouch issues, ideally a G/I doc and/or clinic specializing in patients with jpouches (if such a person or clinic exists?). As for a surgeon, I am not currently in need of one, but I am prone to small bowel obstructions so it would be helpful to  establish a relationship with a j-pouch surgeon if/when the need arises for another rebuild. Thanks for asking.

There are some good doctors that are well versed about J-pouches in Florida like Dr. Jospeh Cody at Florida Medical, as far as Surgeon goes- I would recommend colorectal surgeons at Baycare.

However, I hear very good things about doctors in New York especially Dr. Remzi for Colorectal surgeon and Dr. Bo Shen, their both in New York

@Mary2017 Thank you for your suggestions, it was very kind of you to offer suggestions, especially for the folks in Florida.