I am so EXCITED - after spending over a month looking for a surgeon in my insurance network (IL and IA) to do a K-pouch and finding no one who has done one in 30 years, I took some of your advice and contacted Dr. Fazio in Cleveland. If forced to have surgery in-network, I will have no choice but a permanent ileostomy (having nightmares about this!) I am scheduled for consult July 17 and surgery July 20 (colon, rectum, anus removal, K-pouch creation). The only problem will be convincing insurance to cover it, but we are working on it. My questions are for anyone who has been through this with the Cleveland Clinic. What can I expect? What should I bring/not bring? Where are the best restaurants and things to do in the area for family members making the journey with me (retired parents, 7 year old son, hubby)? How many follow-up visits are involved and when?

Hi...great news! I see no one has replied...I have not been to CC - but replied to another member with some tips..this forum has so much info if you have time to read through the posts.

here's the link

http://j-pouch.org/eve/forums/...1006091/m/5591000313

I had a j-pouch re-do at CC with Dr. Remzi. We enjoyed going to the Cleveland zoo, botanical garden & natural history museum on our trips to Ohio. There is a thread about good restaurants in the area. Check posts by annie nocolon to find it.

Good luck with your surgery & recovery!

So i dont come on here much these days. apologies for such a delayed response.
I had my surgery with Dr. Fazio in sept of '06 (colon, rectum, anus all removed, kpouch formed. one fell swoop)
I was in the hospital for 9 days. and stayed in the area for another 3.
I'd think you're family will be way more concerned with you and trying to be by your side attending to your needs. so, with the exception of the 7 yr old, looking for activities really may not factor in.
i drove to cleveland with my mom, boyfriend, and brother. once i was out of surgery and "in the clear" for the most part, my brother and boyfriend went back to chicago
(my mom suggested that i really wouldnt be up to doing much, and so they would be more 'in the way' than helpful).
my mom didnt' leave my room the whole time with one exception of going to get some items i wanted (hair detangler, balm, lotion). She slept there, in an uncomfortable cot.
BUT we did have a room at the "Hope Lodge" which is kinda like the Ronald Mcdonald house for adults. If you're there b/c of cancer (i'm not too sure why you're getting the surgery, could be another colon problem) but if you're there for treatment or surgery of cancer, you can stay at hope lodge for free, and it really is a lovely place, super clean, super comfortable, and very hospitable (they have no tv's in the room, and a wierd policy about you having to clean your room top to bottom, including washing your sheets n all) but it was worth it. b/c when i was discharged from the hospital, and back at hope lodge, they had the most AMAAAAZING beds EVER (after a week in a hospital bed, i was more than grateful for that). i think the woman told me all the beds were top of the line donated from Serta or something. and they give you a 'section' of the long refrigerator (think refridgerated section of a grocery store type fridge) and you can buy some groceries, keep them there, and there's two big kitchens fully stocked with cooking utensils. and big entertainment 'main rooms' with a big supply of dvd's, big screen tv, internet computers, etc. (and we jsut went to walgreens and bought a little 15 inch tv to keep in room for times i didnt feel like moving.

aaannnywho, all that being said, downtown cleveland, really ain't all that special. i actually really dont like it (maybe i'm spoiled by living in chicago, who knows). but they have a big shopping center (that the train from airport stops in teh basement.) it has tons of stores, stuff like hard rock cafes, etc. and movie theatres.

Cleveland Clinic isn't too far from "cleveland hieghts" which is more like a burb, and its pretty cute there. they have a strip that i liken to "little italy" with cute little restaurants n shops.

like i say though, i only know this b/c i've gone back for follow ups a few times, and THATS when we've gone to movies, to eat, etc. For actual surgery time, we didnt see much of any of cleveland.

to bring? well, the obvious would be very comfy clothes, like pajama bottoms or yoga pants, etc. (after the foley and jp drain get yanked, i really appreciated wearing something other than hospital gown) i had my own pillow from home, cuz i hate plastic pillows. i had nice smelling lotion, and my own body wash, etc. just to feel a little more 'human'. They give you those stupid hospital socks they always give. but i'd also bring something to walk the halls in (its really encouraged to do, but hospital floors can be gross). be careful with anything valuable. a nurse told us that if its not nailed down, it may get stolen (and this was told to us AFTER my moms entire bag had been stolen from the surgery waiting room when she ran out to my bedside b/c they said i needed a transfusion while in ICU. lost all credit cards, car keys, $500 cash, camera wth some final photos of my stomach pre-surgery (no scars...sigh...) but so it goes.

i found the food downstairs in the lobby (i think) area pretty decent all things considered and when i was able to eat, much prefered it to the stuf they'd bring in the room. but thats more b/c i absolutely completely DESPISE those rubber dish things they bring food in (they have them in EVERY hospital i've ever been to. i dont get it. smells horrid, and therefore makes anytihng inside it unappetizing to me)

well, hope that was long enough for ya! myself, i'm flying to cleveland tomorrow morning to have a follow up with Fazio. i'll make sure everythings all ready for ya