Cleveland Clinic Surgeons (cross posted from UC forum)

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run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 2/23/2011 9:47 PM (GMT -6)   
I am ready to request a consultation at Cleveland Clinic to discuss j-pouch surgery (fortunate enough to be in Columbus, so travel won't be bad at all).

Who has worked with their surgeons and has a recommendation? I will also be posting this on j-pouch.org, but I didn't want to miss anyone who may not post over there.

Thank you in advance!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 2/23/2011 10:13 PM (GMT -6)   
not a personal recommendation but Remzi is supposed to be super with the j-pouches. there were 2 other names that come up a lot on jpouch.org I can't remember them, but I'm sure you'll hear them over there. :)
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery scheduled 3/21/11

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/24/2011 8:11 AM (GMT -6)   
My daughter had the first of a three step J-pouch surgery on January 19 with Dr. Jon Vogel. We were very impressed with him. CC and Mayo both insist on three steps if the patient is on high doses of Remicade. Next surgery is in mid April and final surgery will be late June/early July. From what I understand, you can't go wrong with any of the surgeons there - the C/R department is considered one of the best in the world and the nurses on the C/R floor were amazing. Remzi has done many, many j-pouches and is highly recommended. Best wishes to you!

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/24/2011 9:04 AM (GMT -6)   
All CR surgeons at the CC should be exceptional. I've never seen a complaint about any of them.

Sue

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/24/2011 11:47 AM (GMT -6)   
I had mine done by Dr. Tracy Hull. I had several nurses while in the hospital tell me that if they had to have ths surgery they would go to her. Haven't had any complications except my own inexperience trying to make my appliance work.

Some of the surgeons don't do it laproscopically, she does but if there are any issues when she gets in there, she won't chance it and will do it open. She was able to do mine laproscopically.

That being said, I think all the surgeons there are fantastic. I was going to have Dr. Remzi do it, but he said he wanted another surgeon in there. I didn't want anyone training on me (not that that would have been the case...it just made me uncomfortable).
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 2/24/2011 2:36 PM (GMT -6)   
Thank you, everyone for your input! I really appreciate it. I have an appointment for Wednesday with Dr. Vogel. I am excited and nervous all at once. It's so tricky because I am feeling better today so start to question, you know? Ah, the ups and downs.
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/24/2011 2:48 PM (GMT -6)   
I felt the same way. I was in remission, but it was the medication that was making me sick and affecting my liver. It was hard to go for surgery when I felt good. I kept thinking, maybe if I just stop taking the medication my liver will be okay and the UC won't come back. Well, we all know that doesn't happen. The good thing was the surgery is easier and less complicated when you aren't as sick, so it's best to get it done then.

Let me know when you are scheduled for surgery. I am sure you will love the CC and Dr. Vogel.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/25/2011 8:46 AM (GMT -6)   
Best wishes to you! Dr. Vogel is not super warm and fuzzy but I'd just as soon my surgeon be down to business. The staff told us he was one of the best. He even made rounds on the weekend with his twin 5 year old daughters in tow! His office is very quick to reply to emails and phone calls. I feel like we are in very capable hands.

My daughter was in a good remission going into all of this - she had put on 20+ pounds since her flare in October and she'd been lifting weights to be in the best possible shape for the surgery. She definitely questioned whether she should go through with it as she felt so wonderful. She had to remind herself that she was unable to stay in college because of her UC and her life was not moving forward. She could usually achieve long stretches of remission but was always waiting for the other shoe to fall and when it did she was incredibly ill. That's just no way to live.

Keep us posted.

Tinamarie
Regular Member


Date Joined Feb 2009
Total Posts : 28
   Posted 2/27/2011 4:00 PM (GMT -6)   
I am using Dr. Tracy Hull at CC. She is awesome!

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/27/2011 6:30 PM (GMT -6)   
Tinamarie...have you had any of your surgeries yet? I love Dr. Hull, too.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Tinamarie
Regular Member


Date Joined Feb 2009
Total Posts : 28
   Posted 2/27/2011 11:37 PM (GMT -6)   
Disney, just made a post today. This is the first time she will be operating on me. She is doing a colostomy on March 18th. I feel like finally I am in good hands. Still doesn't make it easy. I'm so happy to know someone else who has had her as their surgeon. I have had great success with Dr. Paraiso too...who is a urogynocologist at CC.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/28/2011 12:49 PM (GMT -6)   
Not only is she great, but her entire team is wonderful. The nurses are fabulous, too. If the medical student is still with her (short brown hair, nice young lady) you will love her. Even though she was just a student, she always made me feel better.

I will be praying for you, and I know you are in very good hands.

Karen
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/28/2011 7:07 PM (GMT -6)   
J has his appt on Thurs. 3/3 with Dr Strong. I believe he and Dr Hull have the same nurse practitioner. I spoke with her on the phone. She thought J would be more comfortable with Dr Strong since he was a man. Honestly, J doesn't care and we have had many female physicians. Normally I find them to be way more compassionate. Hope we didn't make a mistake by letting her schedule him with Dr Strong.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/28/2011 8:16 PM (GMT -6)   
I think Dr. Strong is very good. I think the nurses told me he only did open surgeries (I could be mistaken) so they had me go with Dr. Hull and she was able to do it laproscopically. I had read good things about him when I was researching. Did you talk to Crina?
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/28/2011 8:49 PM (GMT -6)   
I don't remember her name, but she had an accent and was very nice. I was hoping maybe J could have a lap procedure. I discussed that with her, so I hope he does lap procedures too. confused I know that chances for a lap are low since he has had 2 open procedures, but sometimes they can still do it depending on the scar tissue. Guess we will find out on Thursday. Maybe they will tell us he doesn't need anything... smilewinkgrin

chocoholicres
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/28/2011 9:23 PM (GMT -6)   
Dr. Strong did my first surgery December 6,2010. I was concerned about scarring and he did my surgery laproscopically. I am thrilled with him as my surgeon as well as with Crina, his PA.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/28/2011 10:23 PM (GMT -6)   
Chocoholicres, thanks that makes me feel better !

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/28/2011 10:28 PM (GMT -6)   
J's Mom~ you'll be in good hands, literally! He did most of my surgeries smurf
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/1/2011 3:11 PM (GMT -6)   
In looking at my confirmation email from them, it looks like I am actually meeting with Dr. Lavery. I guess I didn't read it right the first time. :-)

Eep! I can't believe it's tomorrow. My husband keeps trying to calm me down reminding me I'm just going up there to talk to them....but it's a huge step for me mentally. This is something I wouldn't even consider before and now I'm feeling fairly certain I want to do it. I am hoping if they see me as a good candidate I can schedule surgery for the second half of October. There are a few things I want to do first and that timing will be easier on my husband and family who will be available to help with the kids while I'm recovering.

I'll be sure to update once I get back. Thank you all for continuing to be so supportive!
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/1/2011 4:46 PM (GMT -6)   
run4pancakes~I don't think you'll have a problem scheduling that far out...you'll be able to pick the perfect time for you.

I sounds like you already have your decision made, so this really isn't 'just to talk', it's to say YES to surgery yeah Most of us on here haven't regretted surgery, and I don't think you will either! Make sure you have all your questions written down so you don't forget any.

And, just so you'll know, the nursing floor for C/R patients has the BEST nurses smilewinkgrin to get you up and going after surgery!

I hope you get a good night's sleep!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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