Got my appts at Mayo and Cleveland, still no plan

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80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 3/5/2011 4:24 PM (GMT -6)   
Hi all,
I set appts at the Mayo and Cleveland clinics. Cleveland is with Dr. Wexner on march 28th...Don't know if I'll be able to wait that long, with obstructions every day.
 
Mayo (even with a dr referral), is not until APRIL 15TH!!! They have to wait 90 days from last surgery, apparently. I guess I won't get in there, becuase I really can't wait that long.
 
As of right now, I've taken the catheter out and am waiting for the next obstruction (any minute now, I'm prepared...) so I can go to the ER and get my final CT scan so my surgeon can come up with a plan.  I'll keep you all posted.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/6/2011 2:19 AM (GMT -6)   
oh dr Wexner is a great dr, i've heard a lot of excellent things about him from ppl here, i really hope he can help you! so sorry you have to wait that long, hope you're able to manage till then. hang in there.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/6/2011 12:27 PM (GMT -6)   
I don't know if things are the same in the States as Canada. If it was here, I would phone Dr. Wexner's secretary EVERY morning to politely check if there was a cancellation that day. I have known so many people that by phoning all the time got in earlier than planned. The only tricky part is to make sure you don't piss them off....you have to be really polite.
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 : 1054
   Posted 3/6/2011 12:54 PM (GMT -6)   
That's a good idea, but they're 3.5 hrs away, so I can't really drop everything and be there in 10 minutes if they have a cancellation.
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!! :)

ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 3/6/2011 1:30 PM (GMT -6)   
When I scheduled my eval at Mayo, they scheduled it for a certain date - and then my GI said that wasn't soon enough. I called back and told them what he said and they found an opening for me. I would have either you or your GI call and talk to them and beg for something sooner.
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 - 1/4/2010
Surgery #3 - 3/23/2010

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/6/2011 1:50 PM (GMT -6)   
They have a rule that it has to be 90 days after your most recent surgery, though.
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 : 827
   Posted 3/6/2011 2:13 PM (GMT -6)   
Stephanie....I think the 90 day rule can be bent if they really feel you need something done. We were told that Dillon could not have this third surgery until 12 weeks after having his J pouch built. When it ended up that he was having so much trouble with obstructions (between second and third surgery) we were told that the "real rule" is that a minimum of 8 weeks is needed for the swelling of the tissue to go down from the prior surgery and then they give it an extra 4 weeks just be sure. Dillon ended up having his surgery at 9 weeks and all was fine.

Also, a cancellation might not be for the same day. It happens a lot that appointments are canceled a few days ahead of time.
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 : 1054
   Posted 3/6/2011 2:17 PM (GMT -6)   
Ok, maybe I'll call my GI and see if they can pull some strings.
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 3/7/2011 1:38 PM (GMT -6)   
Any luck, Stephanie? How are you doing today?
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.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/7/2011 8:52 PM (GMT -6)   
Hey!
I actually forgot to call. Work was crazy. The good news is I felt well enough to not really have this at the tip of my brain. I have been waiting for the next obstruction since Thursday, and I can't believe it's been this long. I will call tomorrow though.

Thanks for thinking of me:)
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 3/8/2011 8:13 AM (GMT -6)   
A day you can sort of forget about IBD is a good day indeed! I hope you stay obstruction free. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/8/2011 7:13 PM (GMT -6)   
LOL Pancakes, this is definitely one of the last times YOU'LL think about ibd...I rarely do now even (all I think about is the obstruction)! Hooray for ostomies :)
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!! :)
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