Posted 8/26/2014 2:29 PM (GMT -7)
"I have thus been advised by my GP to seek out comprehensive treatment where a team of doctors work together for diagnosis and treatment protocol. Since I have so many chronic illnesses, this makes most sense. We're not entirely sure that there isn't more going on that no one where I live is getting hold of. I'm also not entirely sure that I don't have other auto-immune issues going on."
This is what Mayo does SO well. I went there about 3 years ago about 6 mo after my initial diagnosis. I was still having some symptoms that weren't improving with treatment (at the time my diagnosis was UC and I was on Asacol after getting into remission from a course of Prednisone.) I was still having issues with my eyes (chronic inflammation had made them very dry and the eye drops I was given just felt like a bandaid that only helped some of the time.) I wanted to talk to a nutritionist about whether there were things I might try with my diet to help maintain remission. I also had an on-going skin issue that hadn't improved even after my GI symptoms were much better.
I saw Dr. Schroeder there (at the Rochester Mayo), and found him to be very thorough, very unrushed (I saw him 3 times in the 4 days I was there, and a couple of my appointments had to be at least an hour long), and very well-informed as far as what the other doctors had said when I met with them. That's really the beauty of Mayo's system - you have a "main" doctor (in the specialty of whatever your basic problem is, then after your first meeting with that doctor, they will set you up with appointments with all the other doctors you need to see in other specialties. In my case, it was a nutritionist, an optometrist, and a dermatologist. They did comprehensive blood work on me the first morning, as well as an MRI and a colonoscopy in the same week. I believe we were there from Monday - Thursday and everything happened in a timely manner. Every time we would meet with Dr. Schroeder, he would have already read the notes that the other doctors had made after my appts. with them (and the other Drs read Schroeder's notes before my appts with them as well.)
That said, they could not help me much more than my doctors at home (Peoria IL) could. The 3 things I was concerned about are just "one of those things" that IBD patients have to learn to deal with, and since I'm not willing to eat a completely different diet than the rest of my family (like an SCD - type thing), the nutritionist basically gave me the "eat a balanced diet" talk. I do believe she told me to eat moderate fiber though, and docs at home had forgotten to mention to me that IBD patients don't usually do well on high-fiber diets (which was what I was still trying to eat since my troubles began 10 years prior with a diagnosis of IBS, and high fiber IS indicated for that.)
BUT, even though they basically just agreed that the treatment I was already getting at home, I did feel better knowing that the #1 gastroenterology dept in the country had given me a second opinion and that they thought I was on the right track. I would go back there in a heart beat if I either felt like my docs at home were struggling, or if I ever had future health issues pop up, especially in a situation where I'm trying to deal with symptoms that aren't all in the same "department", if you know what I mean. In my home health network, I can complain to my GP about 4 different symptoms and she wants to send me to 4 specialists - and none of the specialists talk to each other. At Mayo, that is a given, and I think they are better at connecting the dots than a lot of regular networks of doctors that aren't very quick to consult with each other, even about complicated patients.
I've heard good things about the Cleveland Clinic as well, and would guess that they operate in a similar way. I only have experience with Mayo though, so that's all I can share.
Good luck! I hope you get someone who connects all the dots for you!