I would love to know this as well. I am driving there from Maryland in a couple of weeks for a surgical consult. Are these things they do once surgery is scheduled?

I wasn't sure if the general process is consult, then tests, then surgery with three separate dates respectively? Or if the tests are done during the stay when surgery is scheduled?

They do a manometry, which tests the sphincters. It involves insertng water into the anus and testing pressure or anal reflex. You can google it. I think that is a standard procedure prior to J pouch surgery.

Are the tests done during a separate visit from the surgery date? Just wondering if I'd need to go to CC a 2nd time between the consult and the actual surgery.

tiesto81- good question - I'd like to know that too

PS: I am also planning to go there at similar time or shortly after you - we should keep in touch through the experience!! Best of luck to you.

Pkitty, definitely! Would be great to have someone to talk to and share some of the experience with. Hope your consult goes well with them. I will let you know how mine goes. Heading there on the 11th to meet with Dr. Dietz.

My sphincter test was done on my first visit (consultation), after that I scheduled my surgery for 2weeks later.

I just had my second surgery at the CC which was the creation of the J pouch. I have the third in September when they hook it up to work. The first surgery was to remove entire colon. Per my expereince when going to the surgeon at the Cleveland Clinic you will only have one visit before your surgery. The surgeon will test your sphincter. He will then contact your GI that referred you to them and request all blood tests and colonoscopy results. Once they review everything they will let you know if you are a candidate for surgery. My surgery was three weeks after my visit to the surgeon. When you go the the clinic for surgery you must get a hotel. You will have about 7 appointmets at the clinic the day before the surgery. They will test everything and you will go through some evaluations. They are very detailed and all of these appointments will take most of the day. The good thing is that they are all done in the same building and they are very prompt. They will send you home that day with a bowel prep so make sure you get a hotel. The next day you will arrive for surgery and the fun begins. When they put you under you will wake up what feels like seconds later even though it will be hours later. The nurses are top notch and the nurses aids are all college students at local universities so they know their stuff as well. They take such great care of you it makes the other surgeries easier to face. My surgeon chose the three step for me and I am greatful because it is laproscopic 4 inch cut rather than opening you up wide open with the 2 step. I was sent home three days after my colon was removed and felt great. I was just sent home after my second surgery again only a three day stayc(J pouch creation and feel a little rough but just remember they streched, sliced and diced my small intstine and rectum for 7 hours in surgery (but again felt like seconds). I cant wait until my takedown because to me the bag does suck. Let me know if you have any more questions about the clinic or where to stay while you are there. I chose the guesthouse hotel which is literaaly across the street from the clinic so you can walk to get there.

Mike

BTW I am speaking of the Clevelnad Clinic on Ohio. Would not go anywehere else.

Mike

Thanks Mike H - great info and very helpful! Yes, I am wondering if you can provide more detail about the 7 appointments the day before your surgery where you said they tested everything. What kind of tests? What are the purpose of these tests? What information was found from the tests they did? Thanks!!

Hi Mike,

Same question as Pkitty! Also some others:

- What surgeon did you end up with?
- How was pain management? Epidural?
- How were the nurses and staff? Friendly? Responsive?
- Did you get your own room? Was it a comfortable experience, well I mean all things considered?
- Were you on steroids or any other meds prior to surgery or that you needed to get off of?
- Did they give you documentation and information on the surgery and ostomy? I recall someone saying that after the consult they got a binder of info that covered a lot of info.
- I actually don't have a GI referring me. I am bringing my medical records so not sure how this impacts finding out if I'm a candidate for surgery.

Pkitty and tiesto81
As far as the appointments. 1-blood tests to make sure you are healthy enough for surgery. 2-visit with nurse to check all your vitals in detail and go into detail your currents meds and any allergies. 3-internal medicine dr. to make sure any current meds will not affect the surgery and to test your heart but only if they feel the need is there. 4-interviews with admissions to go over what to expect and financial discussions. 5-visit with the surgeon to go over in detail step by step on what to expect. 6-stoma nurse will pick the best spot on your body for the stoma and go over all the details of what to expect. 7-meeting with anestesia to make sure you now what to expect and to make sure you can handle the procedure. You will also have some meetings and discussions to make sure you can handle this emotionally. They leave no stone unturned.

My surgeon is Dr. Stocchi. He is very good and you can read all about him on the internet. he has had many papers published. Pain management was great. I used general anestesia during surgery and had a morphine pump in my room for recovery. Had no pain at all in the hospital. The nurses and staff were top notch, you push your button and they are there. The nurses aids are all students in nursing school and even top notch. This place lets you recover, they even empty your bag for you so you can rest but they make you take alot of walks starting the day after surgery. You will share a room but they are big and you have your own privacy. When you visit your surgeon for the first time he will take you off any meds that are of concern, will taper your steriods and tell you to avoid advil or aleve 7 days prior to surgery because they thin the blood. They give you a ton of information that covers everything you need to know. The visit with the stoma nurse is probably the most important because the stoma is your life after surgery. If yo do not take good care of it it will not take good care of you. As long as you have recent colonoscopy records and blood tests I dont think it will be an issue, but they may want to schedule you for one if your records arent current. Just let me know if you have anymore questions. I had a ton of questions before my surgery and was given the advice I needed to know as well. Make sure you have or join a good support group becaue no matter ow well you go in prepared you may still batlle depression and second guess yourself just as I did but once you will start to feel better. Just take it one day at a time.

Mike H

Thanks Mike, really appreciate all the info. How are you doing so far after having the second surgery? I bet you are looking forward to the takedown!

It has been about three weeks since my second surgery and I am just starting to feel pretty good. Even though it is not connected yet my pouch still works about once a day, mainly mucous with a very little poo. My surgeon said tis is normal because the small instestine sweats and the loop ileo catches 99% of the poo but not all of it. It really seems to work well and when I do get the urge to go I can hold it for hours. I have no regrets thus far and I cant wait till my takedown.

Mike H

Dr. Strong did my surgeries in 2010 attheclinic. I went there with all of my records and my gastroenteroligists recommendation for surgery. He looked at all my records and did a quick scope in the office to check out what was going on. Dr. Strong recommended surgery and left it up to me when I wanted to do it. I ended up choosing the first of December so his office scheduled me to see a general intern to make sure I was healthy enough for surgery, tons of lab work where the type and cross your blood and run cbcs and other tests as well. Also, they set up a couple of appointments to get insurance info and to kind of orient you to what all goes on before, during and after your procedure. Finally about 8-9 hours later, I saw Dr. Strong. He made sure we were on the same page and asked if I had any questions. Depending on how far you are from cleveland, you may want to stay the night before your surgery- mainly because you'll have to drink and pass a gallon of go lightly. You'll go into the surgery center and get hooked up to ivs and finally taken to surgery. You'll wake up hours later where you will be hooked up to PCA. The next morning the nurses will want you to get up and walk. I had quite a few complications, not related to the surgeon or any errors on CC's part. I ended up being in the hospital for 25 days. Throughout that time I had no complaints or issues with the way I was treated. The entire team at Cleveland Clinic will treat you exceptionally well. Unfortunately on H50 and H51 you'll share a room. That was the only thing I would change about the whole process. Once release from the hospital, they'll most likely set up a home health care nurse to help with the ostomy and bloodwork for a couple of weeks.
My second and third surgeries were much less eventful. I went through all of the same test as before for the second surgery. I think I was in the hospital 10 days at that time. For the third surgery, again all the same test with the addition of manometry test to check muscle and sphincter ability. My stay for that surgery was 7 days.

I really like dr. Strong. His bedside manner is phenomenal as well as his skills as a surgeon. In fact, I was up seeing dr. Shen for pouchitis issues, and Dr. Strong saw me in the waiting area and came to chat and tell me he would also take a look at the report. Love that he cares.
Good luck with all of your appointments and procedures.

Thanks for that infk. I was reading a few of your previous posts and it sounds like you are doing well now that you are healed up. I'm hoping that it is treating you well. Has pouchitis continued to be an issue for you at all or is it just an occassionsl blip? Read that you were having some pain that was diagnosed as being pouchitis related. I sit non stop for my job so this is a concern (although I understand it didn't have to do with the surgeon).

Mike H and Res - does Dr. Remzi favore 3 step surgeries more than 2 step surgeries? What was your condition with UC before surgery? I seem to always be reading that Dr. Remzi does 3 stage operations whereas most others seem to do 2 stage operations.

I have heard Remzi only takes on problem cases now. And I don't think he does it laproscopically, that's why its 3 steps

Poucho- Remzi did mine laparoscopically. It was supposed to be 3, but he combined steps 2 and 3. In fact, I was due for a scope, and he did the scope in March of this year. While he may be taking on dysfunctional pouches, I think he is still doing as before, at least with me. Awesome man!

Dr. Remzi did not do my surgery. Dr. Strong at Cleveland Clinic did my surgery in three steps. I expected it to be done in two steps, however because I was on Remicade and Prednisone going into surgery, he wanted to spread out my surgeries to give me more healing time. With all the complications I went through, I am grateful he chose to do it this way.

Rachel how has your pouch been treating you? Is the pouchitis chronic or just treated with AB when it comes up? I'm curious if people that go to CC tend to do better given the number of surgeries they do.

Dr Stocchi is my surgeon and he prefers the three step. My UC before surgery was pretty bad. My entire colon was ulcered and bleeding and I was losing at times 1 pound per day until the surgery.

I'm still having issues with pouchitis/possible crohns. I saw Dr. lashner and Dr. Shen at the clinic three weeks ago as a follow-up from my hospital stay for severe pouchitis, dehydration, and anemia. I had been on prednisone, cipro and flagyl for e month and half leading up to my appointment. So I was mostly healed although there were quite a few ulcerations. So I went another two weeks on cipro and flagyl. I've been off the antibiotics for a little over a week now and my symptoms are back. So, other than this flare up I've been mostly healthy. I've had pouchitis three times in the two and half years since takedown. I have energy most of the time to do whatever I want. Surgery was a great choice for me.

Dr. Remzi did my surgery and it was a 3 step because I needed more time to heal. And it was done laparoscopically.

My husband just had surgery at CC with Dr. Stocchi July 1st. The rest of his colon was removed (partial colectomy was done locally May 2012) and they did the j-pouch/loop ileostomy. Thankfully it could all be done lapriscopically.

They are very accommodating when you come from a distance. For instance, at our consult appt in April they said if we could stay a couple days longer, they'd go ahead and do x-rays, labs, CT & scopes so it'd all be done before surgery. They don't take any other hospitals word on anything. Everything is re-biopsied and/or redone.

We did have to return mid-June for a small outpatient surgery for additional biopsies, but they combined that visit with all the pre-op appts for the July 1st surgery. That way we just had to show up the morning of the 1st without going for appts beforehand.

Takedown is tentatively the beginning of October and can't come soon enough. This loop is much more problematic than his colostomy was!

We stayed at the Guesthouse which could not have been more convenient, but is unfortunately closing mid-August and being torn down in October. :-(