Thanks for the support! I have been researching this disease and have discovered that the Mayo Clinic is rated #1 in the treatment of Microscopic Colitis. The protocol consists of initially relieving the symptoms through meds and then discontinuing them with a gluten free or dairy restriction diet. There is one located in Jacksonville, Florida. I live in Miami. It is a 6-hour drive to the clinic for me, but at least I won't have to deal with GI's that don't have a clue. Check out the website:
http://www.mayoclinic.org/diseases-cond ... c-20192519
Headed to GI Doc
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Ann
the few people that went to Mayo Clinic had limited success
their approach towards diet is mostly about gluten and dairy. not the wider suggestions that we make here.
some previous discussions
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
This one is from a few years ago, before they were more approachable about diet,
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
my suggestion - if the appointment is covered by Insurance and you are not outlaying big $$ then the 6 hr drive might be worth it.
if it is not covered by insurance - then I would give serious consideration to the suggestions that are made here..
the few people that went to Mayo Clinic had limited success
their approach towards diet is mostly about gluten and dairy. not the wider suggestions that we make here.
some previous discussions
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
This one is from a few years ago, before they were more approachable about diet,
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
my suggestion - if the appointment is covered by Insurance and you are not outlaying big $$ then the 6 hr drive might be worth it.
if it is not covered by insurance - then I would give serious consideration to the suggestions that are made here..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Ann
this discussion is from somebody who went to Mayo in Sept 2016 - 4 months ago
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
this discussion is from somebody who went to Mayo in Sept 2016 - 4 months ago
http://www.perskyfarms.com/phpBB2/viewt ... light=mayo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Ann,
The GI department of the Mayo Clinic has been rated as the number 1 in the nation for years. However, over the years quite a few members here have gone to the Mayo for treatment, but to date, all of them have been disappointed. Without exception, they got no lasting relief at the Mayo because regardless of what the Mayo's website claims, their GI docs prescribe Entocort or some other medication and either insist that diet changes don't help or don't even bring them up, except for minor items such as caffeine or sugar.
The discussion that Gabes referenced is exactly what I'm talking about.
Now I realize that the Mayo may have suddenly become enlightened during the past month or 2, and they've changed their treatment programs, but if they actually have, I'll be mighty surprised. 5 years ago, when I finished the book (Microscopic Colitis), I even included a reference in the book to their claims that diet changes are beneficial for treatment. But I soon regretted it because everyone who went there got no help with dietary treatment. Everyone from here who went there came away disappointed.
My impression is that their GI docs don't bother to read their website, and they continue to treat MC pretty much the way they've always done. That said, that web page appears to have been recently updated (spruced up a bit, again), so maybe a miracle has happened and they have actually seen the light and changed their ways. If you decide to give them a try, please update us on how it goes. I would love to hear that they have actually learned how to treat MC. But in the meantime I'm not holding my breath — we've been disappointed too many times in the past.
Tex
The GI department of the Mayo Clinic has been rated as the number 1 in the nation for years. However, over the years quite a few members here have gone to the Mayo for treatment, but to date, all of them have been disappointed. Without exception, they got no lasting relief at the Mayo because regardless of what the Mayo's website claims, their GI docs prescribe Entocort or some other medication and either insist that diet changes don't help or don't even bring them up, except for minor items such as caffeine or sugar.
The discussion that Gabes referenced is exactly what I'm talking about.
Now I realize that the Mayo may have suddenly become enlightened during the past month or 2, and they've changed their treatment programs, but if they actually have, I'll be mighty surprised. 5 years ago, when I finished the book (Microscopic Colitis), I even included a reference in the book to their claims that diet changes are beneficial for treatment. But I soon regretted it because everyone who went there got no help with dietary treatment. Everyone from here who went there came away disappointed.
My impression is that their GI docs don't bother to read their website, and they continue to treat MC pretty much the way they've always done. That said, that web page appears to have been recently updated (spruced up a bit, again), so maybe a miracle has happened and they have actually seen the light and changed their ways. If you decide to give them a try, please update us on how it goes. I would love to hear that they have actually learned how to treat MC. But in the meantime I'm not holding my breath — we've been disappointed too many times in the past.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I have not been to Mayo in Jax. If you are driving north consider stopping off at Shands/University of Florida in Gainesville to see Dr. Glover. I've seen Dr. Glover at Shands/University of Florida in Gainesville. She sees a lot of patients from South Florida.
https://ufhealth.org/sarah-glover/background
She will spend unlimited time with you. She recommends that all of her MC patients go Gluten Free.
Dr. Glover will also use any slides from former colonoscopies. THIS IS HUGE! She will not force you to have another colonoscopy if you have access to the biopsies from your former colonoscopies.
Another MCer on the board from the Tampa area has seen Dr. Glover.
I don't have her listed in the recommended Dr. thread because there are a couple of negatives. Her appointments generally run 2-3 hours late. The staff told me she works much later than the other GI docs as she will spend unlimited time with you. Bring a big book. Shands is cold. Bring a heavy sweater. Parking is available but you may need to take a shuttle bus as the facility is so large. Valet parking is also available. Dr. Glover tests for everything under the sun--could be a negative depending on your insurance. Dr. Glover also brought up the anti TNF drugs as an option to the other forum member from Tampa--generally we feel this is a negative on the forum.
I live in Gainesville. My girlfriend works with all of the GI docs at Shands/UF and considers Dr Glover the best particularly with the tough cases.
Dr. Glover is very down to earth and a very smart cookie.
My girlfriend (mentioned above) has a stepson with ulcerative colitis. He was treated at North Florida Regional Medical Center, Shands/UF, Mayo in Jax and then Mayo in Minnesota in that order respectively. He was not treated by Dr. Glover at Shands/UF. My girlfriend thinks the Mayo GI docs have a significantly smaller patient load as the Mayo docs responded to Kevin's Dad's emails with lengthy email responses. My girlfriend said the Shands/UF GI docs just don't have the time to respond to family emails with lengthy replies due to their heavy patient load.
In reference to Kevin and ulcerative colitis the Mayo docs were talking the same meds as being discussed at Shands/UF for ulcerative colitis and both locations have been doing the same surgeries for UC for the last 40 years.
That said, Kevin's Dad preferred Mayo specifically in Minnesota as it is a very "touchy-feely" place and doctors seemed to have plenty of time to talk to fathers and respond to emails from fathers. Mayo in Minnesota seemed to have a "chi-chi cachet" to it as they have patients from Saudi Arabia and around the world.
It think Dr. Glover is a good second opinion GI doc. She gets a lot of patients from Miami. Drive would be 4 hours instead of 6. She will spend unlimited time with you. She will use your existing biopsy slides i.e. no new colonoscopy required. She sends your existing slide to Shands Pathologist for second look. (THIS IS HUGE AS MANY SECOND OPINION GI DOCS WANT TO IMMEDIATELY DO ANOTHER COLONOSCOPY) She doesn't like to subject her patients to colonoscopies as these are hard on patients. She'll be talking gluten free. Her first med is generally budesonide--Entocort.
https://ufhealth.org/sarah-glover/background
She will spend unlimited time with you. She recommends that all of her MC patients go Gluten Free.
Dr. Glover will also use any slides from former colonoscopies. THIS IS HUGE! She will not force you to have another colonoscopy if you have access to the biopsies from your former colonoscopies.
Another MCer on the board from the Tampa area has seen Dr. Glover.
I don't have her listed in the recommended Dr. thread because there are a couple of negatives. Her appointments generally run 2-3 hours late. The staff told me she works much later than the other GI docs as she will spend unlimited time with you. Bring a big book. Shands is cold. Bring a heavy sweater. Parking is available but you may need to take a shuttle bus as the facility is so large. Valet parking is also available. Dr. Glover tests for everything under the sun--could be a negative depending on your insurance. Dr. Glover also brought up the anti TNF drugs as an option to the other forum member from Tampa--generally we feel this is a negative on the forum.
I live in Gainesville. My girlfriend works with all of the GI docs at Shands/UF and considers Dr Glover the best particularly with the tough cases.
Dr. Glover is very down to earth and a very smart cookie.
My girlfriend (mentioned above) has a stepson with ulcerative colitis. He was treated at North Florida Regional Medical Center, Shands/UF, Mayo in Jax and then Mayo in Minnesota in that order respectively. He was not treated by Dr. Glover at Shands/UF. My girlfriend thinks the Mayo GI docs have a significantly smaller patient load as the Mayo docs responded to Kevin's Dad's emails with lengthy email responses. My girlfriend said the Shands/UF GI docs just don't have the time to respond to family emails with lengthy replies due to their heavy patient load.
In reference to Kevin and ulcerative colitis the Mayo docs were talking the same meds as being discussed at Shands/UF for ulcerative colitis and both locations have been doing the same surgeries for UC for the last 40 years.
That said, Kevin's Dad preferred Mayo specifically in Minnesota as it is a very "touchy-feely" place and doctors seemed to have plenty of time to talk to fathers and respond to emails from fathers. Mayo in Minnesota seemed to have a "chi-chi cachet" to it as they have patients from Saudi Arabia and around the world.
It think Dr. Glover is a good second opinion GI doc. She gets a lot of patients from Miami. Drive would be 4 hours instead of 6. She will spend unlimited time with you. She will use your existing biopsy slides i.e. no new colonoscopy required. She sends your existing slide to Shands Pathologist for second look. (THIS IS HUGE AS MANY SECOND OPINION GI DOCS WANT TO IMMEDIATELY DO ANOTHER COLONOSCOPY) She doesn't like to subject her patients to colonoscopies as these are hard on patients. She'll be talking gluten free. Her first med is generally budesonide--Entocort.
Ann,
I just checked our Dr. thread and Sheila who lives in Palm Beach recommended a Doc in Jupiter.
The problem with the docs 4-6 hours away is the follow up visits.
I just checked our Dr. thread and Sheila who lives in Palm Beach recommended a Doc in Jupiter.
Sheila is a regular poster on the board. Her Doc would save you considerate drive time. I'd consider setting up second opinion appointment with Stein since he is much closer and perhaps set up an appointment with Glover 4 months down the road to have something on the books for third opinion if you are still struggling. You can always cancel.PostPosted: Thu Aug 18, 2011 6:06 am Post subject: Reply with quote
I would recommend my gastroenterologist, Dr. Bernie Stein of Jupiter, Fl. He is a partner in the largest GI group in our area. He diagnosed my mother with CC more than 10 years ago. He began treating me last December, diagnosed me with CC in March. He is in agreement that GF is the way to go. All in all, he's intelligent and open minded.
Sheila
The problem with the docs 4-6 hours away is the follow up visits.
Thanks to all for the advice. I had started a gluten free diet last Sunday. I also found a gluten free calcium vitamin with b3 at Whole Foods. I also take a daily bath in Epsom salts to absorb magnesium into my skin and blood stream. My skin is very thin and subject to easy brusing. I had a massage today and I have black and blue finger prints all over my body.
Ann
Two of budesonide's side effects are thin skin and easy bruising. Some people are affected much more severely than others by certain drug side effects. Thin skin is also a side effect of magnesium deficiency, so the Epsom salts may help somewhat. But the main reason for the symptoms you described (thin skin, easy bruising) is almost surely the budesonide. If you also have brittle nails, then the main problem may be magnesium deficiency, but if your nails are strong and tough, the main problem is almost surely the budesonide.Ann wrote:My skin is very thin and subject to easy brusing. I had a massage today and I have black and blue finger prints all over my body.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
