How do you get into the Mayo Clinic or Cleveland Clinic?

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80sChick
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Date Joined Oct 2009
Total Posts : 1053
   Posted 3/1/2011 9:25 PM (GMT -6)   
Hi All,
I'm thinking about going to either the Mayo Clinic (in Jacksonville, FL, about 2.5 hrs away) or the Cleveland Clinic (Weston, FL, about 3.5 hrs away) for a third opinion on a plan to get rid of my obstructions.
 
They're both so far away from me...how do I go about contacting them or know what surgeons are good or whatever? Has anyone ever traveled this far for treatment? It seems like a HUGE undertaking, driving that far away to just get a consult, and then do subsequent tests, and then if there is surgery, etc...
 
I am just so overwhelmed. I'm not sure where to start. I don't have any family here to drive me there or come with me, and I'm just so exhausted of all of this and don't want to take time off my job because I love it so much and don't want to put it in jeopardy.
 
Thanks so much for all of your input. Don't know what I'd do without you guys.

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 3/1/2011 9:42 PM (GMT -6)   
I am going to the Cleveland Clinic (main campus in Cleveland) tomorrow for a consult with a surgeon. It's a 2 1/2 hour drive, but worth it to me in order to have the best surgeons I can get which makes a world of difference from everything I hear. I went on their website and used their appointment request form, filled in the information they asked for, and then they sent me an email with an offered appointment time which I accepted. They also had a phone number which I could have called to set an appointment over the phone.

I know it's going to be multiple trips. How many I'm not sure...that's among the questions I plan to ask tomorrow. I feel confident it's worth it to not feel like I have to second guess the quality of care I will receive. I'm surrounded by several very good major hospitals, but I'm making this drive as many times as I need to in order to get this done right.
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.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/1/2011 9:54 PM (GMT -6)   
Oh man! I was just reading your other post about all the issues you are having with the obstructions and your new doctors. I hope so much you can get this straightened out ASAP. I'm so sorry you are going through all of this. :-(
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.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/1/2011 10:03 PM (GMT -6)   
80's

I've heard good things about Steve Wexner at Cleveland Florida, but have not had personal experience there.

When I went to mayo to get my diagnosis of why I was having small bowel obstructions due to scarred in small intestine and could not defecate due to my scarred in colon, the technicians were wonderful and found all the damages from my 2006 surgery. But the docs there said it was too dangerous to release small bowel from scar tissue, (so they were not going to deal with my small bowel obstructions), then they wanted me to come back for $6000 pelvic floor rehab though I had told them it was scarred in place from the 2006 surgery due to failure of PT and Botox shot tried near where I live. They just sent me a note that said keep using your peg nutrition tube that I did not have nor never did have!

That was my experience with mayo. BUT mine was to assess severe damage done at another hospital maybe they just didn't want to deal with it. Others may have had better experiences there. I think you are really smart to look around as whatever you have done has to work.

Good luck, Rosemary

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 3/1/2011 10:06 PM (GMT -6)   
J has an appt at the Cleveland Clinic (main campus, Cleveland, OH) on Thursday for a second opinion. It is about a 3 hr drive for us.  I did research online as well as looking around this website and others. Here is a website that has patient comments as well.  I called and told them his history, they connected me with one of the nurses and I set up the appt that way.They told me what records to have sent from Nationwide Childrens and I have the disc with his last radiology films to take with me. I called Childrens Hospital and had the records sent. Unfortuantely CC called me today and had not received them yet. She was going to call and have them faxed. They were very helpful in helping get things arranged. Good luck.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/1/2011 10:12 PM (GMT -6)   
I just went online and set up an appt at the Cleveland Clinic in Weston, FL. It's the farthest away but I figure either way I'm driving far and that seems like the best option from what people have said. I requested Dr. Wexler. I hope they can get me in soon. I'm waiting for an email saying when my appt is.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 823
   Posted 3/1/2011 10:48 PM (GMT -6)   
I think this is great news. Just to have the correct people looking after you has to be the turning point in getting you feeling better
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/1/2011 10:56 PM (GMT -6)   
The problem now is just how soon can they get me in. I am sitting here as I type with a catheter in my stoma because I had an obstruction earlier this evening. I can't really wait anymore. I'm in complete survival mode, because when I think about what is really happening to me I'm a complete mess.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 823
   Posted 3/1/2011 11:06 PM (GMT -6)   
Did you let them know how constant your obstructions are? They should know that you are sitting with a catheter in your stoma. I do hope they can see you ASAP. Do they have an emerg dept that you could just show up at?...I don't know how it works there
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 3/1/2011 11:20 PM (GMT -6)   
Sometimes going to the ER is the best way to get your foot in the door and make things happen faster. Only thing is, you usually get the doc on call if that matters to you.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/2/2011 8:50 AM (GMT -6)   
Hubby's local GI put a referral into 2 places and Mayo Clinic responded first which is how we chose them. However it wasn't super fast either but it was after his hospitalization and he was stabilized and functioning. Your situation is certainly time sensitive. Hope you get an appt. fast because even at that there might be some "red tape" and bit of a delay.

Maybe the emergency situation suggestion isn't such a bad idea. You're going to a highly rated place. Postive thoughts and prayers coming your way.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/2/2011 8:00 PM (GMT -6)   
80's

Yes, do let them know that you have to put this catheter in you most of the time now (it sounds like). This cannot wait.

A little trick I learned. Each of these big hospitals has a patient advocacy department. If you can get in touch with one of the people in that dept and explain the situation, sometimes they can get you in faster and even with the doc you request.

Been in your shoes (not exact situation, but fighting for survival) Rosemary

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/2/2011 8:07 PM (GMT -6)   
Hi all,
Update:

1st opinion surgeon is going to do one more CT scan the next time I'm obstructed and then solidify a plan.

2nd opinion surgeon is apparently an idiot, as he said I had Crohn's in my small intestine, prescribed 3 months of 20mg of prednisone, and doesn't think I have obstructions.

Gastro (who I went to see today) confirms that I do not have Crohn's, and the "crohn's" that 2nd surgeon saw was irritation from the blockages and catheter insertion, as all of the "crohn's" was at the blockage site. Thank god I never started that pred. Gastro is referring me to the Mayo clinic, as he has heard sketchy stories about the Cleveland Clinic and has treated people with horror stories from there.

I will hear back by Friday about whether I get an appt there and when it is. I will keep you all posted. Thank you, as always, for your feedback and support.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/2/2011 9:03 PM (GMT -6)   
Good luck, Stephanie! I've been thinking about you and glad your GI is helping you with this. I hope you get answers and help soon.
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.

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 532
   Posted 3/2/2011 9:54 PM (GMT -6)   
Hi
I just met with Dr. Pimentel at CC in Weston.  He saved the life of someone I know with Crohns  He made many changes to my current treatments and I am really hopeful that I have (crossed fingers) finally found a GI that I can team up with to hit UC hard.
 The surgeon that i have heard great things about is Dr.Weiss.
GOOD LUCK
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

Post Edited (sas) : 3/2/2011 7:57:25 PM (GMT-7)


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 823
   Posted 3/2/2011 10:42 PM (GMT -6)   
Stephanie,

It sounds like you are now being looked after again. It is wonderful to have a plan.

What a jerk the second doc was! You just have to shake your head and be thankful that you did not follow his prescription. You have to worry though about the rest of his patients!

I hope that the next while goes a little more smoothly for you until you can get this all worked out.

Cathy
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/3/2011 8:19 PM (GMT -6)   
Steph,

WOW! OK sounds like you're on a better road with mayo, hopefully. I remember CC was where they operated on Lizzie so many times that her intestines finally adhered so much that they now no longer work and they just wrote her up as "failure to thrive." Her more local hospital had to help her with the feeding tube. Good grief. Good luck. Rosemary

ps lizzie's was the CC in ohio, but still....think you are likely better off at mayo.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/3/2011 8:58 PM (GMT -6)   
80's

When you have these blockages does poop totally stop coming out of your stoma, you bloat, and feel nauseaus then you stick in the catheter and the poop starts coming out into the bag through the catheter?

I'm just trying to wrap my head around what you have.

I always feel bloated and what I eat comes out lots slower than it did in the beginning (3 years ago) but over time the small intestine does slow once it realizes that the colon is not longer in the picture, but my effluent still comes out. I just wondered what warning signs you get that you are blocking up?

Rosemary

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/3/2011 11:06 PM (GMT -6)   
Yes, you were right the first time, Rosemary. I have pain at my stoma site, no output for hours, distended stomach, nausea, and I can feel stuff trying to come out of my stoma and then nothing!

Then when I put the tube in, stuff starts coming right out. When I put the tube in I can feel it go in fine, and then I feel resistance. Taht's the blockage. I gently push against it until it opens up, and I can feel it free up.

It's bizarre and annoying. No one has ever heard of it happening besides Collicat.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/4/2011 2:41 PM (GMT -6)   
Thanks 80's. Good thing you have that catheter and have been trained on how to use it.

I have some weird thing going on as in never being hungry. But then I eat for nutrition and what was in me comes out. THEN about 2 or 3 hours later what I eat comes out. Always feel bloated but not actual increase in girth. What is confusing me is that the first year I had my ostomy, what I ate literally whaled out of me by the time I finished eating it. And I felt good and hungry again. Now it takes hours and I can feel the stoma working, but luckily stuff is coming out. BUT if I eat anything heavy like a banana or potato I can get an issue like you describe and have to blast it out by drinking lots of hot tea. On a CT enterography all my small intestines were wide open. But from experience I know that something is not as well as it was, but one day at a time and I eat bland.

Sounds like your doc has a good plan in mind. You may have a narrowing in a ways from the stoma maybe from scarring? Maybe endoscopically through the stoma they could stretch this area???? I don't know. But thanks for the info and I wish you the best. Sounds like we all ought to be at least told about those catheters such as you have if we have had issues of any kind. There's always a rescue, that is comforting. Sincerely, Rosemary

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 586
   Posted 3/4/2011 4:45 PM (GMT -6)   
That is great news you got!
 
I do have to whole heartedly disagree with what the surgeon said about the Cleveland Clinic.  They often get patients who have had bad surgeries elsewhere and are known to fix them.  So many people here have had the j-pouch there and I haven't heard of anyone who have had problems.  They are #2 in the country (behind the Mayo Clinic) in digestive diseases...if there were "horror" stories, I don't think they would be #2.  Many, many surgeons learn at the Cleveland Clinic and go on to other places, because it is the place to learn how to do the j-pouch.  Just my two cents...they have changed my life for the better so I don't like to hear them being bad mouthed when I have heard nothing but good things about them (and experienced it myself).
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