You could not be in better hands. Dr Remzi is regarded as one of the best in the world especially for jpouch redos. I had my original pouch done there by a different surgeon in 2008. Had bad infection that doomed my pouch and spent 10 weeks in hospital. I also dealt with a sinus and a leak. I was about to give up and just go with a permanent ostomy but figured I would schedule a consult with Remzi just to hear his thoughts on my case. I initially thought he was very arrogant and I was not sure I liked him even though I knew his resume and the success he's had with redoing jpouches. The more we spoke he had me on his side. He felt all my issues were mechanical that all started with initial surgery. I had my redo this past October and my takedown was about 6 weeks ago. I am doing well. A bump in the road here and there but overall pretty well. If you have any questions feel free and ask. 

I'm seeing Dr Remz next week for similar issues I vave had issues since my Jpouch surgery fu w years ago.  It has not been fun. I had some issues after my takedown surgery also.  I am traveling from CT.  If you research on this board you will find CC has the most experience worldwide re-operating  on failed  jppuches and I understand Dr. Remzi does  a lot of re dos. I'm traveling to have the same tests you did and an EUA as well. I feel you are in great hands if you go with Dr Remzi. I trust him implicitly. He speaks fast just so you know but you will like him. He is a very caring man. I know how scary facing more surgery is for those of us who have had a bad first experience.  That's what has kept me out of the OR for five very long  years. I cannot do it any longer.  No joy with constant pain and living in the bathroom.  Good luck   

I did not see Dr. Remzi, but I did have my j-pouch constructed at Cleveland Clinic. I could advertise for them, I swear. Not only have I had a very healthy j-pouch since 2008, I've been told it is a good looking j-pouch by a local doctor here. LOL!

What I loved about that place was that it wasn't just my doctor who was great. The support staff was actually caring. The nurses knew their stuff. They actually listened to me, even when I was groggy and anxious. I never felt like a burden during my surgery recovery, and my surgeon there answered all my questions quite well.

I had my colon removed at a local hospital, and I did not get anywhere near the level of expertise or care I received later on at CC. My first surgery was a nightmare experience, but I think CC helped me trust the medical establishment again.

Good luck and be well! 

Count me in as a Remzi/Redo/CC fan.   I had about 5 reasonably major prior surgeries -- loops/takedowns -- you name it. I almost gave up to a perm Ileo, but decided to see Dr. Remzi.  He simply said, "you have a mechanical problem and I can fix it."  So I felt I had the opportunity to have one-of-if-not-the best pouch redo surgeons in the world. 

Fast forward, it's been about eight months.  I can only say, "I'm 100% normal" as far as I am concerned.  I was glad I went with Dr. Remzi.  Understand, he is not going to be bedside day in and day out at the hospital, but he spends the majority of his time doing what he is the best at -- pouch redo surgeries.

I realize that not all outcomes will be the same, and I also realize my success may not go on forever, but as far as I am concerned, I just have a smaller colon than most people and that's the extent of it!

Best wishes.

CC is by far the best, in many ways, as explained above.  add to it: their fab art collection, which helped me heal.  i stayed at the glidden house, which i love.  they have a cc rate and you can grab a shuttle bus from the art museum or botanical garden or take a taxi.  

i got a k pouch.  if they can't redo the j, then consider the k.  it's been great for me

good luck!

I'm here now. I'll be having tests tomorrow and seeing Dr Remzi on Friday. I sure hope he can save my pouch.  I'll keep others interested posted on my results. 

I also have a J-Pouch, surgery done at Mayo Clinic in May 2013, that has never functioned right. I had an abscess that went undetected for about a month after my surgery. My biggest complaints are that I have 15 - 20 bm's a day and have a hard time eliminating, not to mention pain.  I saw Dr Remzi last month and he feels the abscess/infection got me off to a bad start. Between this and a twist where it's connected, he's recommending surgery for me as well.  Just got my date for the ileostomy today, May 16th and pre-op appointment May 2nd.  Curious about how long this first hospital stay will be and how the recovery is.  Good luck and I'll be interested to hear how it goes for you.

Jim

Jim

Is this a permanent ileostomy or temporary?   If permanent did they talk to you about a K  pouch? I had mine last November – – after many years of a failed J pouch – – and am very pleased with it. That's not to say there are not some problems, but I prefer it to the ileostomy    Check out the k pouch Korner on this forum for more information.  Good luck, Janet 

Hi everyone! I am in the same spot. I have had three surgeries so far. I had a diverting ileo so I can relax and think about my options. It's almost ten years later, and I want to get rid of the ostomy.  Dr. Remzi seems qualified and publishes a lot in the area. 

1) what is the cost of this procedure if out of pocket? 

2) would anyone think getting an initial consult would be worthwhile?

JLH posted:

Jim

Is this a permanent ileostomy or temporary?   If permanent did they talk to you about a K  pouch? I had mine last November – – after many years of a failed J pouch – – and am very pleased with it. That's not to say there are not some problems, but I prefer it to the ileostomy    Check out the k pouch Korner on this forum for more information.  Good luck, Janet 

Hi Janet,

This would be temporary, giving my J pouch a rest for 6 months or so, then pouch reconstruction is the plan.  I'll look into the K pouch.

Thank you

I had an EUA with Dr Remzi yesterday. He has suggested ostomy for six months as I think he wants to rule out crohns for me prior to a pouch redo. I have difficulty emptying my pouch due to anal  stricture  and some of my issues are mechanical in nature also ( longer cuff than he would prefer and small size pouch). I have pretty much struggled from day one five years ago with chronic  pouchitis and anal stricture and my cuff is in rough shape from disease and prob from constant straining.  . I am also dealing with anal  fissures and some stenosis due to all of this.  

Dr Remzi is a great surgeon and he is very matter of fact. CC is a very well run hospital. I think if you come here you will be happy with your choice. 

I could use your help! I am seeing Dr Gorgun on Sep 7 2016 at the Cleveland Clinic and can't find a hospital i can afford. Any tips of cheaper hotel places, the Cleveland Clinic hotel on campus even with patient discount costs $170 a night, which is to much for someone on disability. I am looking for a room that has a mini fridge, microwave, and a small kitchen area to help save on food costs. since you have been there two times, i hope you can help me. I need to book my flights in the next day or so, so any tips are welcomed. thanks so much

I stayed at the Glidden  house,  which is about $130 with the cc discount – – I think. You can get a free shuttle to the hospital from the Botanical gardens , right next-door.   I don't think they have a microwave  or any sort of kitchenette. It's very very nice  and has the most fantastic all you can eat breakfast. There are other options, and staff at Cleveland clinic will help you. Call the general phone number  and ask for help. Another way to save money is to take public transportation into town. It takes a little longer than a taxi, but can save you $50 per trip.   I used it even when I flew in for just the day. Good luck, and keep us posted.  Janet

The newly built holiday inn is good. My husband stayed there during my surgery. Refrigerator but I am unsure about microwave. Great place to look into, about $120 per night, maybe?

Hello, Beth. Have you googled Bed and Breakfast places?  

BB good idea. Try Airbnb too.  Jh

Thank you all for so much help! I tried talking with the Cleveland Clinic's Concierage Services but they where not helpful like the Mayo Clinics had been, which was vary disappointing. I had hoped they helped with flights, finding afford able hotel, and answering questions. Instead they just gave me hotel phone numbers to try. All wanted money upfront and if I only had to stay 2 weeks and not 3, i couldn't shorten my stay and get any money back.  Most Hotels want a lot for no hot breakfast, microwave, and $20 more for a mini fridge. They only close restaurant near the hotel on the CC campus is McD and after GI surgery i will need much lighter meals, which is why a small kitchen areas is handy. 

I don't know if this is a good deal or not, but my mother (who will be the one coming out to CC with me) Just told me she got a deal using Orbitz that includes 2 round trip plane tickets from Salt lake City - Cleveland flying with Fronter Airlines plus 2week hotel stay at the InterContinental Suites, with insurance coverage for a total of $3,587.04. Is this a good deal, bad deal , or about average? 

I plan to start up a separate post the day before i fly out and i will post the name of it under this form. So if you want to be kept up to date, I will be telling all. I am going there for a (Surgical consult for Proctectomy Ileal Anastomosis and consideration of J-pouch) meaning removal of my rectum, which is the only part of my large bowel i have left and maybe removing my J-pouch. 

Its nice to know that I am not the only one out there with problems like this, i am sorry others have to suffer though. Thanks for the advice and support! I am now 27 years old and have been battling with GI issues since i was born so premature. (10wks early and hadn't grown 4 weeks before delivery)