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mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 7/22/2010 9:25 PM (GMT -7)   
had a GREAT appt at Mayo clinic today.  Now I understand what the hype is about.  The place was amazing and my doc seems awesome.  Everyone I spoke to before hand said he's great and he is.  Spent over an hour with me...we set up a plan of action with tests etc and I'm going back in 3 weeks...and the best part...they have couches in the exam rooms instead of those hard plastic chairs!!  haha- it was pretty cool though.  He knew my GIs from the past 15 years and seemed genuinely pleased that 1- i seem to be heading in the right direction and 2- my wife came with me and was engaged not waiting in the other room...all questions were throughly answered and options discussed...you can tell their GI dept is on the forefront of things bc there were about 12 clinical trials headed by Mayo docs that were posted on the wall...Man Obamacare's going to be a kick in the ass.
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/22/2010 9:31 PM (GMT -7)   
How I wish I could go to Mayo! But, I guess I have the next best thing. My GI is friends with one of the GI's there and consults with him about me. She wants me to consider doing one of their studies. I'm not sure whether I want to guinea pig anymore though (I've done 2 studies, both biologics).
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/22/2010 9:37 PM (GMT -7)   
that's great that your GI consults like that. My GI that wanted me to go see the Mayo doc said that if my ins didn't cover Mayo and it turned out to be too expensive for me he would do the same thing- consult with Mayo but keep seeing me personally. It's so important for these docs to communicate constantly...it's the only thing that's going to one day turn the light bulb on in some GI's head and CURE us all! :)
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/22/2010 10:27 PM (GMT -7)   
Which Mayo doc are you seeing mgtman?
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/23/2010 4:43 AM (GMT -7)   
I, too, am curious. I see Dr. Sanborn, and I know several of the other doctors/nurses at Mayo 9.
Diagnosed with Crohn's late December 2004. Narrowly avoiding a full-blown flare using nothing but sheer awesomeness.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/23/2010 5:19 AM (GMT -7)   
I am so happy for you ... I felt the same way.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 7/23/2010 7:01 AM (GMT -7)   
I go to Mayo in Florida. I like my doc but mostly I see his nurse practitioner and she is fabulous. Never once have I felt like she didn't completely listen to me, return phone calls and treat me with kindness, empathy and professionalism. Too bad all practices aren't like that. I think Mayo puts the focus on the patient. It helps outcomes and actually keeps costs down. It's a good model for health care.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil, omeprazole for reflux, wellbutrin, 5 mg prednisone/day.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA, LOTS of joint pain followed by a recent set back with the colitis.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/24/2010 10:12 AM (GMT -7)   
Yeah, at first the guv-ment was citing Mayo as an example and model for the healthcare reform plan. Then somehow, the Kaiser Foundation became their idol. *sigh* Better Mayo than Kaiser any day!!!!!!!! When I started seeing Kaiser cited and quoted more and more thru the healthcare reform process the more I lost all hope. *sigh*
 
I see Dr William Tremaine at Mayo, Rochester.


My computer says I need to upgrade my brain to be compatible with its new software.


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/24/2010 8:37 PM (GMT -7)   
The health care plan is modeled after the Massachusetts state wide program -which is of course not working out so very well (ya know cost over runs, ineffeciencies, bankrupting the state . . pesky details) all that should have been a flag on the field, shot across the bow for smart people to pay attention to.  uhh - that would be a negative on both counts!  
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/24/2010 9:39 PM (GMT -7)   
i'm seeing Dr. Russell Heigh in Scottsdale. I was surprised that my ins covered mayo but everyone is saying yes- and trust me i checked 4-5 times to confirm and re-confirm and then re-confirm the re-confirmation! haha.
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 7/24/2010 11:45 PM (GMT -7)   
Hello, I live in Queens, NY. Does anyone know if there is a Mayo clinc anywhere around?
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Remicaid or Humira when I go back to GI July 27th.....I'm so scared :-(
Seton drain was put in on May 4, 2010....Two more Seton drains put in June 15th :-(
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/25/2010 6:22 AM (GMT -7)   
az, fl and mn i believe
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/25/2010 10:19 AM (GMT -7)   
Yep, the 3 Mayo Clinics are the original in Rochester, MN and then one in Jacksonville, FL and another in Scottsdale, AZ.
 
However, Cleveland Clinic in OH, and Massachusetts General in Bostons and Johns Hopkins in .... where? Baltimore? are in the top 5 leading gastro departments in the country as well.
 
Whether their overall system is as EFFICIENT as Mayo I don't know. CC was NOT back in the late 90s but that may well have changed. They've managed to maintain their #2 rating all these years, constantly pushing Mayo's gastro department to stay ahead of them.
 
For efficiency you still can NOT beat Mayo Clinic. One of the original doctors to join Mayo at its formation was the developer of the pneumatic tube system used for so many years by department stores, etc. to move paperwork (i.e. receipts, etc) from department to department and floor to floor, etc. just as it was used at Mayo to move test results, scripts, etc.
My computer says I need to upgrade my brain to be compatible with its new software.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/25/2010 9:28 PM (GMT -7)   
hopkins is great as well...i'm from baltimore and my doc back in the early days of my diagnosos was at hopkins -- not a long trip from NY either if you find a doc you want to see...if you go eat a bunch of blue crabs for me! man i miss 'em!
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.

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