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Posted 9/26/2010 2:07 PM (GMT 0)
I am in the process of deciding to have surgery for my uc. I live about five hours from the Cleveland clinic so I want to go there. I would love to here about the best surgeons there. I will be calling tomorrow to set up a consult. Thanks...this site is great.
Posted 9/26/2010 11:35 PM (GMT 0)
Disneynutt, I tried to write you the other day but my laptop keyboard was possessed. I actually just got home tonight from my second of three surgeries at the Cleveland Clinic. I think it's a great idea to go there for a consultation. If you remember, I live in Ft. Wayne, so it's only about 4 hours from me. I think all the surgeons there are good or they wouldn't be there. Mine is Dr. Lavery and I think he's definitely one of the most knoweldgeable ones there. I had several nurses tell me how they liked him and if they ever needed to have surgery they would want him to do it. I remember when I first called for a consulation, they told me it was going to be like two months but then I called another number and got an appointment in like two weeks. I don't remember if I called Digestive Diseases directly or what?? Usually, if you don't tell them there's someone in particular you want to see they'll just set you up with a surgeon. That's how I got Dr. Lavery. Some doctors there perform laproscopically and others don't - mine doesn't but that wasn't a huge deal to me. If you go on the CC website and type in Digestive Diseases you can look up the doctors and see their pictures and learn about their background.
My insurance doesn't require any kind of pre-authorization for surgery consulations so I just set it all up on my own. My GI - who I love - never really even talked to me about surgery and I don't think he's up on the j-pouch at all. It definitely won't hurt just to talk to someone there and get their opinion. You won't be asked to sign a paper stating you are giving up your colon, at the consulation. I had my first surgery about a week and a half after my consultation. I'm glad I didn't really have time to think about it. I could have pushed it back if I wanted. So far, everything has went pretty well. Should go back in around 10 weeks for the takedown. I'd like to get it in before the end of the year for insurance reasons. Let us know how it goes!
Posted 9/27/2010 12:12 AM (GMT 0)
Oh my gosh, you are a lifesaver!! That is so great to hear you are doing so great. Do you know why some people have 2 surgeries and some have 3, like you? I was just looking at information about Dr. Ramzi. He is the department chair and has received many awards. Have you heard about him? Are you happy you got your surgery? I have so many questions and am so nervous. I can't believe you had your surgery so quickly. I don't think I need a referral, but would like to ask cc how much this will cost.

Thanks so much for responding. I am looking forward to hearing more about how you are doing.
Posted 9/27/2010 1:28 AM (GMT 0)
The number of surgeries is determined by how sick the patient is. For a 1-step, no recent history of pred use; for a 2-step, moderately ill; for a 3-step the patient is usually very ill or has been a long time pred user when admitted.

I think my surgery was in the $150,000-$200,000 range 10 years ago. It varies. I also only had to wait 2 weeks. It appears that the top places have a shorter waiting time from consultation to surgery. If you want more CC surgeon recommendations, ask at www.j-pouch.org However, I have never heard anything negative about any CR surgeon at the CC.

Sue
Posted 9/27/2010 2:02 AM (GMT 0)
Yeah, I will add that another reason he wanted me to have it done in three steps is because I had been on immunosuppressants for a long time. I was on Remicade for two years and I had been on Humira for about  2 1/2 months prior to my consulation. As for costs, I think my first surgery was around $40,000 before insurance. If you have a maximum out-of-pocket with your insurance that will likely be the amount you'll pay because the surgeries are expensive. It's nice if you can have both or all three surgeries done in the same year for that reason. It might take a lot longer to get in with Dr. Remzi, not sure. I've heard nothing but good things about him but that's the case for all the surgeons there. Yes, I'm very pleased with my outcome so far. I'm pretty worn out right now and sleepy too, but I'm not in much pain at all. My surgery was on the 21st. Don't miss UC at all and it's nice to not have to miss out on things anymore. Before the surgeries I was a bit concerned about the bag and how my husband would handle it but then five weeks after my first surgery he was good to go, before I was even ready. I just pull a Belly Band over it and it's no big deal. You're going to feel so much better it will be a minor tradeoff - and it's temporary. Good luck!
Posted 9/27/2010 2:02 PM (GMT 0)
     I have no idea what my surgery cost...lol.  It was done June 28th and I never received an explanation of benefits from my insurance company, nor did I ever receive one two years ago when I was hospitalized for UC for ten days.  Oh well, as long as I don't receive a bill that I have to pay is fine with me.  I have Personal Choice, Pa blue cross and shield.

     My surgeon wouldn't operate until I was off the Humira at least six weeks.  He wanted to make sure it was out of my system.  I was still on prednisone though, 20 mgm but tapered as soon as I left the hospital by 5 mgm per week.  I had my surgery performed by Dr. Robert Fry head of colorectal surgery at Univ of Pa Hospital in Philly.  He served his residency at the Cleveland Clinic and has been in practice over thirty years.

Posted 9/27/2010 6:47 PM (GMT 0)
My best friend's mother had Dr. Lavery for her rectal cancer surgery and said he was wonderful too. I've heard good things about Dr. Ramzi as well. My friend's mom also said the nurses at CC are wonderful and that the ostomy nurses had or had had an ostomy at some point so they are really good at teaching you how to deal with the bags.

I just had an emergency colostomy because my colon perforated, but they were only able to remove the half that was sick, leaving a healthy ascending colon. They told me they did this because I had been "open" for a very long time and lost a lot of blood and they wanted to get me closed up. I told them I was ok with removal of the whole thing before hand because I wanted to get the J-pouch, but it just didn't work out. So I'll have to have 2 more surgeries once I'm healed in 4-6 months. I was on pred for a long time too. I live 4 hours from CC as well and there's a good chance I'll go there for my other surgeries because the hospital I had my emergency surgery at doesn't do J-pouch procedures. My biggest problem is my insurance runs out in November, so I have to find out how to get covered or get a job that offers insurance before I need the next surgery. sad

Scrap Girl, do you still have the bag after your second surgery? And would you say that you feel your recovering faster than your first surgery? Just trying to get a feel for what I'm in for later
Posted 9/27/2010 8:39 PM (GMT 0)
I am awaiting a call back from the CC. They recommended Dr. Geisler to me. He does the j-pouch and can do it laparoscopically. Their system was down so they have to call me so I can set up an appointment for a consult. I called my insurance company and I don't need a referral (yea!). Also, since I do have a out of pocket maximum I think I would like to wait until January to have the first surgery so I don't have to pay the maximum twice. My GI was supposed to call back today and tell me what I should do because he wants me either off the 6mp or to have a liver biopsy (which I feel is unnecessary). He hasn't called back.

Betsaronie...I hope you find a job with insurance. It's great to hear that the nursing staff is so great. They are who we see most often.
Posted 9/27/2010 11:57 PM (GMT 0)
That sounds good Dineynutt. I've read a lot of positive things about Geisler, as well. It would be nice to have your first operation in January, after the holidays. Let us know when you have your consultation. I'm curious what he will tell you. Good luck!
Posted 9/28/2010 12:00 AM (GMT 0)

Betsaronie, I do still have the bag. I'm not as sore after this surgery for some reason. I think my incision is pretty much the same. I'm really, really tired though but it's only been one week.

Posted 9/28/2010 4:37 PM (GMT 0)
I have had 2 colorectal surgeries at Cleveland Clinic Florida.  I had a colectomy in 2007, and just had ileostomy surgery in June.  Dr. Wexner was my surgeon for both surgeries and he was the best.  I cannot say enough good things about Cleveland Clinic and the top care that I received.  They treated me excellent.

butterfly

Posted 9/28/2010 10:05 PM (GMT 0)
I have an appointment on October 8th...yea!!! My husband and I are going up the day before and are leaving the kids. We are going to stay at a nice hotel and go to dinner. Besides the appointment, this should be a nice trip.
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