cleveland clinic

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tigerpawn
Regular Member


Date Joined Apr 2006
Total Posts : 346
   Posted 5/6/2010 6:11 PM (GMT -6)   
curious if anybody has experience with cleveland clinic.
thanks
tigerpawn

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 5/6/2010 8:23 PM (GMT -6)   

Yes, I had my bowel resection there 3 years ago. My surgeon was Lavery.

Elizabeth


Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 5/7/2010 5:20 AM (GMT -6)   
Yes. I go to the Inflammatory Bowel Disease center at Cleveland Clinic. In fact, next Wednesday I will have a balloon dilation procedure for strictures. I really like their IBD Center. They deal only with Crohn's and Colitis and let me tell you it is a really big difference. Compared to my other GI's who only see Crohn's once in a while...they would tell me nothing was wrong and that my Crohn's was relatively controlled by Cimzia. I was still having a lot of gas and pain. The dr at the IBD Center took one look at my CT Scan and Colonoscopy and along with my symptoms and told me I have narrowing in two locations. It was nice to see a dr and not have them tell me it was all in my head. I see Dr Bo Shen. He is a knowledgeable dr and has a great sense of humor as well.

tigerpawn
Regular Member


Date Joined Apr 2006
Total Posts : 346
   Posted 5/7/2010 6:42 AM (GMT -6)   
what is the procedure to see a DOC at cleveland clinic,
and how hard is it.
thanks tigerpawn

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/7/2010 8:08 AM (GMT -6)   
The Cleveland Clinic is a prime example of the huge difference between teaching hospitals whose docs see lots of crohns patients each year and have superior academic credentials as opposed to small community or suburban doctors who don't have that much experience with crohns. 
 
Go to their website and get the phone number to make an appt.  If you have an HMO you may need to be referred to a doctor at the clinic - if your current GI won't refer you then that's confirmation you're seeing the wrong doctor.  Move on to your GP for a referral.  If you're not on an HMO you can "refer" yourself.  You may have to wait a several weeks to get in but it will be worth it - and if things get really bad go to the clinic's ER - you may well get admitted to their GI service and you'll be on your way.  Best of luck!

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 5/7/2010 8:10 AM (GMT -6)   
I go to the Cleveland Clinic. My doctor is extremely intelligent...although, he honestly doesn't have the best bedside manner. All of his peers have a VERY high opinion of him, however. I see Dr. Jean-Paul Achkar, and I was admitted under Dr. Inkster (she is very nice and intelligent). You just need to call their digestive center and they'll set you up with an appointment right there depending on what doctors are taking new patients. It's very easy. All of the staff is incredible and understand (from my experience).
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/7/2010 7:29 PM (GMT -6)   
Cleveland Clinic's gastro department is outranked only by Mayo Clinic in Rochester, MN. Its hard to find any better. Unless your insurance requires a referral you can go online and make your own appointment. I was able to get an appointment w/in 10 days when I first went there.
My computer says I need to upgrade my brain to be compatible with its new software.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3067
   Posted 5/7/2010 9:59 PM (GMT -6)   
Don't forget, if you aren't trying to see a specific doc, you can see if there are any cancellations for that day (if you live locally) and get in much quicker!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 5/8/2010 6:02 AM (GMT -6)   
I am not sure if you need a referral to the Inflammatory Bowel Disease Center or not. My old GI is a Cleveland Clinic Dr and she felt I was above her level of expertese. So, she referred me to the IBD center. She referred me to her favorite dr there. Clevelandclinic.org is the website. The IBD Center is under their Digestive Disease Institute. I still had issues with GI's and colorectal surgeons at the Digestive Disease Institute that did not deal with Crohn's a lot. They were the ones telling me it was all in my head. A colorectal surgeon and my old GI at Cleveland Clinic said that although I had some narrowing and inflammation it was not enough to cause any issues. Once I got to the IBD Center they knew exactly what I was talking about. At the IBD Center my new GI said any narrowing causes issues and needs to be dealt with ASAP. I am getting partial blockages in 2 areas and boy does it hurt. Anytime I have had questions I email my new dr or call his office. He and his staff have always been very prompt and helpful.

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 5/8/2010 6:59 AM (GMT -6)   
When my local GI told me I had to have a bowel resection he said that he wouldn't le t me go anywhere else. I kept waiting on a call back for a surgery date and and was feeling very very ill. Then when I went for an office visit my GI called Dr. Lavery direct and had me talk to a nurse and I had my surgery two weeks later.
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


by/his/grace
New Member


Date Joined May 2010
Total Posts : 4
   Posted 2/23/2011 2:38 PM (GMT -6)   
This is my first time writing in any forum so please be patient.  I had a colectomy & anastomosis back in 2006 for severe colonic inertia.  Felt better for about 3 to 4 months and I have been sick ever since.  I still deal with the colonic inertia even though they removed 7 feet of my bowel.  Three of my large colon and 4 of my small.  I asked the surgeon why so much and he told me that is what looked the best.  Ridiculous!!  Maybe I am the one wrong here.  I am lost and scared.  I was seeing a doctor at Johns Hopkins they have a motility department but very few people seem to know what they are doing.  Hopkins seems to be the experts at Crohn's so they say, that may be debatible.  I have been researching the cleveland clinic.  I would really appreciate to hear from anyone who has gone to the clinic for colonic inertia.  I also have garaperisis, and a collapsed duodedum bulb.  Help does anyone know a good doctor at cleveland we will be traveling from PA.

doormouse
Regular Member


Date Joined Nov 2005
Total Posts : 93
   Posted 2/23/2011 6:23 PM (GMT -6)   
after years of searching that is where i got my dx from i go to them as my main gi doctor although i dont live in Cleveland long story i tired one closer to him a little over a year ago and he did a scope which did not go well and he also tried to say i didnt have cd i went back to th cleveland clinic and he said from the report he had from that doctor no way for him to make that dx as he did nt complete the scope . so yes the docs there are amazing i see Dr lasnher
DX with uc first in 2005
DX with crohns in may 2006
asthma all my life treating with albutrol & Symbcort
on study drug since may 2010 Vedolizumab MLN002
tried steroids ,asacol, pentasa,rowasa.
remicade which was allergic to
also DX with depressoin at 13 yrs old not taking anything for that right now

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/24/2011 9:24 AM (GMT -6)   
How long are you usually at Cleveland when you go?  My rhemy is probably going to send me there and I tried to find out what the normal visit time frame is and they couldn't tell me until I scheduled an appt.  We are still ruling out one other med before making an appt., but I'm trying to get an idea for work/financial purposes.  I'm very glad to hear that many have had good results there.  I'm assuming I'll be seen for Crohn's and arthritis. 

dinkley
Regular Member


Date Joined Feb 2010
Total Posts : 107
   Posted 2/27/2011 11:49 AM (GMT -6)   
I would suggest that when you call, ask schedule any procedures in the morning (e.g., scope, etc.), with an appointment to talk to the doctor(s) afterwards in the afternoon. You may be spending the night - or more, depending on the number of tests you'll need. Be sure to let them know you're coming from out of town, and how long your trip takes. They can be very accommodating, but you need to emphasize that you're travelling and that you'd appreciate an idea as to how long to schedule the trip for.

We were recently there, and stayed at the CC Guesthouse. Nothing special, but convenient and serves its purpose - after all, you'll only be there at night to sleep!

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 2/27/2011 4:57 PM (GMT -6)   
They are excellent at scheduling appointments when they know you are from out of town. When I had my surgery I did all my preop appointments and scans in one day. They give you a schedule and you procede from one to the other and are done very quickly. Most of the hotels give discounts if you tell them you are going to be at the Cleveland Clinic. We stayed about 20 minutes away so my family had some nice restaurants  to visit while I was in the hospital. 

by/his/grace
New Member


Date Joined May 2010
Total Posts : 4
   Posted 2/28/2011 4:46 PM (GMT -6)   
Thank you to everyone who responded. The Cleveland Clinic is my last hope. I know there are worse things in life than not being able to go to the bathroom, but colonic inertia can destroy your life if you let it just like all the other horrible digestive diseases. Sometimes I can't get my stomach to empty and somedays its the other end. I had a lady ask me one day when my baby was due my belly gets so distended. I was in a good mood that day and just said oh it won't be to much longer. I was happy just to be at the grocery store since now I can't go at all. I am praying that I won't get a doctor that says this is all in my head, but if they get the medical records from Hopkins that shouldn't happen. You do need to tell them that you are traveling from out of the area. I did not schedule my appt. yet but I did speak to someone there and they told me it all depends on if you are admitted or if tests will be schedule it could be several days. There is just no way of knowing. God Bless you. I will put anyone on my prayer list if you would like someone to pray for you. Life can be so difficult at times. My faith has sustained me during these last six years. I also wanted to ask anyone who has colonic inertia if they hold fluid badly throughout your whole body, and tissue. I don't even look like myself I hold so much fluid. God Bless.
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