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Would going to a Mayo Clinic be worth it?

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Crohn's Disease
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Posted 6/19/2011 11:35 AM (GMT 0)
I was wondering if anyone had been to the Mayo Clinic in Minesota and seen any of their gastrointerologists. If so, who did you see and do you recommend them? Is you haven't been to the clinic in Minnesota but one of the other Mayo Clinics and have seen someone you would recomend there that would be appreciated too. I'm just at such a loss with the doctors in my area because they don't know what's wrong and they don't know what to do to make me feel better. I really need a doctor who listens to everything I say and believes what I say and a doctor who cares to help me.
Thank you for your help! :)

Post Edited (bdpal575) : 6/19/2011 2:36:32 PM (GMT-6)

Posted 6/19/2011 3:55 PM (GMT 0)
You might want to change the title of your post to put Mayo in it so people who've been there are more likely to answer. Best wishes to you!
Posted 6/19/2011 11:09 PM (GMT 0)

kazbern said...
You might want to change the title of your post to put Mayo in it so people who've been there are more likely to answer. Best wishes to you!

Thanks! I wasn't really sure what to call it...that makes more sense though lol :)
Posted 6/20/2011 12:25 AM (GMT 0)
I do all of my Crohn's-related care at the Mayo complex in Rochester. I was diagnosed by the local clinic, sent to the pediatric GIs at Mayo, where they confirmed it. Dr. Grothe was my doctor at that point, but she'd a pediatric GI, so I don't think you'd see her. Since then I've been under the care of Dr. Sandborne, but he recently took a new position over in California. His replacement is one Dr. Loftus, but I've only met him a few times. I'm doing clinical trials, so the actual physician doesn't really do much work with the patient, beyond overseeing the trials.

Most of my direct care and whatnot is done by a pair of nurses in the IBD Clinical Research Unit. They coordinate the studies, and make sure the patients are filling out the paperwork and all that good stuff. Jan Burnes and Debora Schmitt. They're wonderful. They've seen and heard pretty much everything related to Crohn's, and don't bat an eye when you get down to the nitty gritty details. We've known each other for 7 years, and I consider them my friends. The rest of the staff on Mayo 9 is great too.

I trust them completely.
Posted 6/20/2011 12:55 PM (GMT 0)
Absolutely! I drive 12 hours one way to Mayo, Rochester, when the locals and I can't keep my gut happy. I wouldn't agree to or allow a resection any place but Mayo, Rochester! I was Dx'd there in early 1976 and had my resection there in early 1978 and was blessed w/a 20 year remission. Since disease activity returned I've been blessed w/symptomatic remission and even total remission for a good share of the time w/just Pentasa and Imuran.

My family and I have been going to Mayo for health problems not satisfactorily handled here at home for some 50 years. We are firm believers in Mayo and love the clinic and the atmosphere and the town and the locals in Rochester. We stay at the EconoLodge out by the fairgrounds which is locally owned and use the shuttle exclusively not moving our car again until we leave to go home.

Arghhhh! I"m sorry to hear that we've lost Dr Sandborne to CA!!!! I've heard lots of good things about Dr Loftus. I see Dr Tremaine. He's done well by me. I don't know any of the others there now unfortunately. Well, maybe not unfortunately, I haven't had to go to Mayo since 2008, before that 2003 and before that 1999. God looks after fools and Mayo helps when needed. ;-)
Posted 6/20/2011 3:52 PM (GMT 0)
Thank you SO much for your help guys! :) I am so thankful that I have found this site!
Posted 6/22/2011 5:47 AM (GMT 0)
I was at mayo in Sept 2009 because they told me that I didn't need to have a bag but less than 4 months after my resection my entire colon became diseased and in June 2010 got my colon and rectum removed in my home town. Went to mayo b/c my home gi said I needed the bag I went to find a second opinion . Had to pay mayo 15000 bucks which was originally 35000 out of my pocket because Coventry wouldn't cover everything. The price was reduced due to my income.
Posted 6/22/2011 7:53 PM (GMT 0)

I just recently went to Mayo for the first time. I was referred by my GI because I've been having a hard time finding a medication that works and that doesn't cause bad side effects. I saw Dr. Loftus, but most of my time was with the GI fellow (can't remember his name at the moment, but he was great). They actually did listen, and instead of telling me to tolerate the side effects I get from Remicade/Humira (40+lb weight gain, severe acne, hair loss, migraines every 4-5 days)  they brainstormed to come up with treatment options. I was in the MD clinic for almost 2 hours talking to the doctors, and I was blown away that they took that much time to listen!

It kind of felt like medical summer camp- saw the doctors in the morning, and then got a schedule of events for the day- bloodwork at 10:45, Xrays at 11:15, MRI at 1:30, etc, etc. It's a very efficient system and every nurse, tech, and other staff members were great. I'm going back next week for a colonoscopy w/sedation and then meeting with the doctors a few days later to make a treatment plan.

Ask your regular GI if you can go to Mayo for a second opinion- they will send your medical records to Mayo and then a doctor there reviews them and "accepts" you to be seen in the clinic. It can't hurt to try.

Posted 6/23/2011 2:52 PM (GMT 0)
And Mayo, Rochester, is the EPITOME of efficiency. They do NOT waste your time. They are aware you've traveled some distance to see them and that you have the daily lodging and meals expenses and keep you scheduled and have your results available to all your clinic doctors quickly, etc., etc. They also waste no time in keeping you and your doctors back home fully informed of their results and recommendations. I LOVE Mayo!!! IF only all medical facilities could be that efficient, skilled, accurate and CARING!!!!
Posted 6/23/2011 3:15 PM (GMT 0)
IF you DO go to Mayo, please do us all a favor and ASK the Mayo gastros about the status of MRE (magnetic resonance endoscopy) vs CTE today? Accuracy? Vs the Pill camera? And let us know what they tell you. Please, please!!!
Posted 10/23/2013 6:06 AM (GMT 0)
I'm now trying to get my 16 year old boy to the mayo in Rochester now, really my only resort I go to MGH now in Boston,ma since 2004 and before that children's hospital up until 2001. Now after all these years now MGH tired everything now my son is on TPN I need help hoping the mayo will help? He had to many issues skin rash, ulcers, lip swell, blood pressure, heart beats fast if running and pain all the time in the stomach due to flare and iliem is damaged?? To much hope for the mayo!
Posted 10/23/2013 6:12 AM (GMT 0)
Can Crohns be mistaking for something else or along with something eles happening? Any one know about leaking gut!
Posted 10/23/2013 7:59 AM (GMT 0)
Absolutely!

I was seen at Mayo Clinic in Rochester. Dr. Sandborn was my GI, but he is gone now.

Mayo Clinic has the best medical care of anywhere in the country as far as I am concerned!
Posted 10/23/2013 9:40 AM (GMT 0)
Wow! Things have changed since I last posted in this thread. I'm not doing trials anymore, so all of my care is handled by Karen Hansen, a CNP at Mayo. She's fantastic.

Crohn's can be mistaken for other things, but all of the symptoms you mentioned, MbbDs, can be explained by Crohn's. Getting into Mayo will be worth it. They're top notch; they'll get your son sorted out. If it's something else, they'll find it. If not, they'll get him started on a good plan.
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