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Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 9/1/2008 8:07 AM (GMT -7)   
eyes Well I went to the MAYO in MN on the 27th and I'm so glad I did. With my insurance I did not need a referral from a doctor, so I went on my own. I know now I'm changing my regular doctor, and I might be getting a new GI as well.

I found out that I have 3 sections about 2-3 foot in different places in my small intestines that have ulcerations and is inflamed. I found out in 15 min what I had going on that no one I've been seeing here has told me in 2 1/2 years. I was treated with the utmost respect, everywhere I went. I did a lot of test, and not all the results were in, and I'm going to get a full report sent to me. I'm very low on vit-B, and they gave me shots to do, and I most likely will go to 1 shot a week of humira. I have two doctors there and they told me I can keep them as my regular GI if I want. from my home its around a 7 hour drive. not to bad. The GI I've been seeing is 5 hours away, and I pay the same.

We stayed in the extend stay america north, it only was 59.00 a day and it has a kitchenette with dishes so we cooked in our room a lot and saved money. They have a bus that comes to the hotel every hour from 6am to 5pm and takes you right to Mayo.

I'll let you all know everything in full when I get the full report. I know I feel so relieve from what they told me. And that puts my mind at ease.



Dawn turn turn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/1/2008 9:27 AM (GMT -7)   
That is awesome news.  I look forward to hearing what the full report says.  I am so jealous of all who get to go to Mayo, I really do think they are the best for Crohns.  Keep us posted.

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/1/2008 9:53 AM (GMT -7)   
My experience at the Mayo was the same as yours. Glad you got some answers.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 9/1/2008 11:14 AM (GMT -7)   
Dawn: Fabulous to hear! That is great news....
I recently went to the Mayo in January and my experience was totally different. I learned nothing new and they basically said that they couldn't help me.

BUT the doctors were amazing and they make you feel like their only patient (something that I think is so important with this illness and when we are so sick) and to be honest, my mom and I made a vacation out of it and I actually felt half decent while I was there so all of those things made it much better. But it was hard coming home with no new ideas and or answers. But I do not regret going.

Did you learn anything new regarding Crohn's as a whole? I would like to know. What Mayo did you go to and what doctor did you see if you don't mind me asking? You don't have to share that.

Or you could always e-mail me.....

Thanks so much, LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 9/1/2008 12:45 PM (GMT -7)   
LOVEPINK, No I really didn't learn much new about crohn's, but I learned more about me. From what I was told about my condition, it was so mild that I shouldn't even need to take anything for it, not that I had around 8 or 9 foot of ulcerations and inflammation small intestines. He explained why I get so bloated its from bacteria so he gave me some antibiotics to clear it up.

And the doctors I seen was Afif Waqqas ( Fellow IBD Clinic Gastroenterology and Hepatology )
And Edward Loftus (Associate Director, IBD Gastroenterology and Hepatology, Professor of Medicine College of Medicine )

I had a colonoscopy, egd, lots of blood work, and a body CT scan.

They told me if I ever had any questions to feel free to call and one or the other would answer any and all questions.

Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 , vit-B shots ,
Dx Bipolar May 08


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/1/2008 3:28 PM (GMT -7)   
I've heard some really good comments regarding Dr Loftus at Mayo, Rochester. I never see a Fellow tho at Mayo. Wish I did. My Mayo gastro is one of their leading researchers and he's good but he's the only one I ever see in the gastro department. Thru the 50 years my family and I have been going to Mayo we've always had one or even more Fellows in addition to our regular appointed specialist regardless the department. Except for my gastro there. I prefer having a Fellow as well. Especially when they are encouraged to voice their opinions and suggestions even if they don't agree w/the specialists.

LOVEPINK, what gastro did you see at Mayo?
 
RIDER FAN, I think you said you see Dr Tremaine in the gastro department at Mayo? Do you ever meet w/or see a Fellow too or just Dr Tremaine in the gastro department?


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 9/1/2008 4:32:14 PM (GMT-6)


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 9/1/2008 3:34 PM (GMT -7)   
Congrats Dawn!

I'm SO HAPPY for you! And thank you for posting where you stayed. My hubby and I may have to take a trip up there depending on how I do now that I'm off the 'roids. That info def helped! Take care of yourself and keep us posted!

-Emma
turboemma.blogspot.com/


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/2/2008 4:46 AM (GMT -7)   
Ne Ne, several years ago I was having a lot of problems w/bloat and nausea and the cause was bacterial overgrowth as well. I was put on alternating doses of amoxicillin and tetracycline the first 10 days of every month and it worked wonderfully! It took several months before the bacterial overgrowth gave up and quit coming back. I took a good mixed probiotic during that period as well.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/2/2008 8:20 AM (GMT -7)   
Yes CT, it was Dr. Tremaine. The fellow at the time was....Dr. Abdul-Karim I believe.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/2/2008 5:55 PM (GMT -7)   
Thanks, Rider. I've heard a lot of people like Loftus but haven't ever talked to anyone who has been seeing Sandborn. I've wondered what he is like. You're the only one I've heard who sees Tremaine. I wonder if Loftus does most of the patient work? Tremaine and Sandborn seem to be their leading researchers tho you do see Loftus' name quite a bit as well.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 9/6/2008 10:54 AM (GMT -7)   
I actually saw Dr. Heigh @ the MAYO CLINIC in Scottsdale. Again, he was amazing! I didn't learn anything new, but I do not regret going @ all!
If any of you go to the MAYO please keep me posted. It was a VERY expensive week, but it is okay. It is only money- YIKES! My insurance didn't help out @ all (not one cent) and I had to beg the Mayo to waive a few grand out of the $15,000 that is costed out of pocket and I really had to fight. I would love to hear how the rest of you did it financially. I know the ones that live close probably had no problem with insurance and all. But I live in Seattle, so I was not lucky in that matter! Keep me posted! Have a great weekend everyone and keep your head up.
CROHNIE TOO: Sorry it took me so long to get back to you with the doctor I was seeing. I never saw your message and just happened to read this thread again today!
LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/7/2008 6:16 AM (GMT -7)   
Not a problem, LovePink. Glad to hear your Mayo gastro was a goodie. That was always one of Mayo's pluses. They had a knack for selecting, and insisted upon, excellent "bed side manner" from their doctors. It was always stressed and they sure had the cream of the crop both in skill and manner. I've been fortunate, I've always been blessed w/insurance that allowed me to to go any doctor, any medical facility, anywhere in the US. None of this in-network, out-of-network BS. Mayo's reputation was always great about working w/an uninsured patient to reduce charges, easy payment, etc. But then my experience has always been at Mayo in MN, the original. I've never been to Jacksonville or Scottsdale.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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