Cleveland Clinic in Ohio

Solomin,

I a sorry I cannot help you with your question as I am in the same situation you are and considering going to Cleveland clinic also. Cost is an issue for me also as both my prior surgeries were done by a non-par surgeon who I chose as I thought he was the best choice for the surgery. I know you can request an appointment online I believe.

Do you mind if I ask you why you need salvage surgery? I am being recommended for pouch advancement surgery due to refractory cuffitis, yet my surgeon does not want to entertain additional meds like biologics or pentasa or IBD meds to try and get this 2 centimeter cuff healed versus doing another major surgery which from what I have read has a 62% success rate with other issues that come along with. I want a second opinion also.

Maybe you could start with a remote consultation from Cleveland Clinic.
I believe you can find the information on their website.

Call the office of Dr. Bo Shen and tell the nurse your situation and she can make suggestions about what direction you should go. You can see Dr. Bo Shen and he will suggest who he thinks should do your surgery. They do pouch reconstruction there. His office might suggest a surgeon if you already have the documentation that you need the reconstruction. You won't know until you call...so call.

I have heard of Dr. Bo Shen. Is he a surgeon or a gastroenterologist?

ok everyone... easiest and fastest way to get in is to get your doctor to get you a referral directly to Dr. Shen. That will expedite appointments. In general, you will be retested for everything at CC. Dr. Shen does not trust other people's tests most of the time.. And rightly so. My own experience confirms this.

HOWEVER, if you can get there and see them, they will work with you to get all the tests he requires (and oftentimes more tests than any of your local surgeons or GIs have even heard of ) done asap and you will probably get results and even more importantly accurate results far faster than getting anything done locally. Also, he will refer you to a surgeon for consult, should he deem that necessary. I honestly cannot over emphasize the importance of getting the real experts involved when your case becomes problematic. The real experts do their own tests, and read tests differently than the so called local experts. I was tested, CATscaned, scoped, MRIed and drugged and all of that stuff by my local "experts" for 6 months. But Dr. Shen diagnosed me within 15 minutes and confirmed it within 30seconds of a scope. And then he had a plan... yes a plan.. what a novel idea!

Also.. once you get into that system.. they do not waste your time and let you suffer. Fortunately, for me, CC was on my insurance. Jeane,. check that. You might be suprised. Then you will only incur cost of travel.

None of you owe anything to any of your current doctors (unless you have unpaid bills!!!) If you are reading this.. you are probably suffering. So I'm just saying... do what you can to get your quality of life back. They see people from all over the world at CC. My first visit there the guy before was from India, lady after was from California, and I was from Pennsylvania. They have seen it all, research it the most, and really do care for their patients.

My situation was a bit different, I went from UC to jpouch. I live in Ohio already and my gastro sent a referral letter to CC. They were calling me shortly after to schedule an appointment. I would say that getting a referral to Dr. Shen would be great. Do you think there's an advantage of seeing a Gastro over a surgeon?

Also, there are resources specifically for international patients. Go to "clevelandclinic.org" and put your mouse over "Patients and Visitors" - there's a whole section of links for international patients.

Also, if it comes time to travel - "http://my.clevelandclinic.org/patients-visitors/prepare-appointment/travel-assistance.aspx"

I always have trouble finding that particular link.

Dr. Shen is a gastro. I think its best that people with problematic pouches start there... as maybe there is something he can do that doesn't require surgery. And if not.. he can sure make sure your diagnosis is correct so that whatever happens moving forward is done correctly. It is my experience that GIs (not just Dr. Shen) know a whole lot more about the functioning and problems of jpouches than surgeons. So I definitely believe it is best to start with a GI.

When I was there last week, Dr. Shen had just come out of the operating room as Dr. Remzi was doing a pouch redo on someone from another state who's pouch had been built wrong. Even though he is a gastro.. he truly understands how these things are supposed to function.

My gi himself told me he could get me an appointment with both Shen and Remzi hopefully the same day. Long distance from ct but I think I'm in that category now and need to find out if I can somehow avoid surgery if at all possible.

Dr. Remzi is a great surgeon, and I could give you a number you can reach his office at.

Shen is amazing but he is a gastro. Try to see a surgeon and him at the same time. CC is good at scheduling. He has a good 2-3 month wait but worth it. I am going back for pain management to block some of the nerves, they are THAT good at CC I will keep traveling.

Had all 3 of my surgeries at Cleveland Clinic back in 2010. Dr. Geislser was my surgeon I had single port surgery. I am two years out and never been better suffered for 23 years before my surgery, my J pouch is perfect a Gold star Dr. Shen told me this past September. Dr. Geisler is no longer at the CLinic is now at Ohio State University hospital. He is the best. I was orignally scheduled for surgery back in 2006 with Dr. Remzi lets just say he is not what everyone thinks. I see Dr. Shen now every 6 months to a year to just keep my pouch healthy. He is the best in the world. Start with him first he will direct you if you do need surgery. good Luck.

AS I understand it, many of the Colo-rectal surgeons at Cleveland are top notch. I've had Dr. Remzi for my last four surgeries, and am pleased with the work. He's not a warm and fuzzy guy, but that wasn't my first priority anyway. He was recommended to me by Dr. Shen after my old j-pouch failed.

Dr. Shen is the J-pouch Health guy, and is great in consult. I plan on seeing him a lot to manage to health of my new pouch, as I want it to last forever (maybe not a reasonable goal, lol).

quote:

Had all 3 of my surgeries at Cleveland Clinic back in 2010. Dr. Geislser was my surgeon I had single port surgery. I am two years out and never been better suffered for 23 years before my surgery, my J pouch is perfect a Gold star Dr. Shen told me this past September. Dr. Geisler is no longer at the CLinic is now at Ohio State University hospital. He is the best. I was orignally scheduled for surgery back in 2006 with Dr. Remzi lets just say he is not what everyone thinks. I see Dr. Shen now every 6 months to a year to just keep my pouch healthy. He is the best in the world. Start with him first he will direct you if you do need surgery. good Luck.

Just curious as to your reason for saying Dr. Remzi isn't what everyone thinks?

I just called the scheduling dept for colo rectal surgery and they scheduled me an appointment with Dr. Strong (anyone heard of him?). They were amazing, I explained my need for a second opion/ surgical consult, and Tony, the person who took my call, made it happen. I live 7 hours away with a full time job and a young child, and explained i had a small window of time during ym vacation that I could make it down there and he made it happen. I am now in process of getting all my medical records down to him and am interested in what he has to say.

Long story, but I have had my j pouch for over 6 years, and just found out I have a leak, that appears to have been there for the entire time. I am non-sypmtomatic and have good blood tests and no cause for major concern. I went to my family dr about an annoying pain in my right side which led to a cat scan and showed an abnormal area, then they did a dye test in the pouch and saw the leak. My original surgeon admitted he has not fixed a pouch before. I needed to find someone who has.

So within a day I had an appointment with a surgeon, skipped the gastro dr and right to the experts. I am optimistically hopeful, but scared of going through it all again. But I need to know and I need to have it done right.

Just pick up the phone and call them

hey jen.. congrats on seeking help at a great place. only tip for you.. be sure to schedule an extra day or so in case your surgeon may want to run a few additional tests or have you see anyone else. Also, in addition to sending your records in advance... hand carry stuff with you, including copies of all scans, mris, etc.. on cd.

I have heard positive things about Dr. Strong. I am a patient of Dr. Remzi.
good luck. hope they can get you some answers and a plan.

I would also like to know why you don't think dr. Remzi is all what he seems to be? I
He is my surgeon and I wouldn't go to anyone else if I had a choice. He's always been nothing but a sweet guy to me and has always been "warm and fuzzy" with me. I'm curious to hear what others think. I've never had a problem. I have to go back in a month too for another EUA.

hey danielle.. I luv him too! I wouldn't trust another colorectal surgeon touching me EVER. Just had an EUA on tuesday with him and another set for early january. when is yours? we were there the same day in nov. for euas.
also how are you doing with your seton? any improvement? I am in so much pain from tuesday. no drain or seton, so I have no clue why it hurts so much this time. It was my 6th eua. thank goodness for percos.

I know I remember! But this seton is literally a pain in my butt. I hate it so much but it's better than it was a month ago. I was absolutely miserable. I have to go back in a month I'm scheduled January 7th preop and January 8th EUA. That will make my 3rd EUA and I know he is just going to tighten the seton a make me miserable! But I wouldn't want anyone else doing it! He told my parents no c word yet and I keep praying it won't ever be.