It's easier to get into the Mayo Clinic than to see my local doctor, so that is what I did. In fact, his nurse finally came into the exam room (3 hours late I might add) while I was on the phone with Mayo making my appointment. So I asked her to wait until I finished getting my appointment confirmed. Going to have them evaluate my symptoms of difficult bowel movements... really think I have a prolapse or the like from years of hyper activity and some level of straining down low. Anyways, they have a dynamic MRI defacography that I feel will help to pinpoint my problem in high resolution. They want me there for 3 - 6 days, which is a good plan for having them do whatever they want to me.
Now I'm debating about giving them all of my prior test results. I want them to form their own opinions without bias. Besides, I would guess they aren't interested in Dr. Fine's lab results for me. Does anyone have any opinions on providing test results from other institutions?
But my goal with Mayo isn't to address my MC issues, just what I believe are anatomical/mechanical issues. I am putting a lot of faith in them. I have also read great things about their GI/Motility departments, specifically in addressing my current symptoms. Will keep you all apprised as they poke and prod me.
Going to Mayo Clinic mid May
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Going to Mayo Clinic mid May
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
The GI department at the Mayo is currently rated as the number one department in the nation for GI issues (the last time I checked). They should be well-qualified to do what you are expecting of them.
To date (to the best of my knowledge), no member here who has gone to the Mayo for help with their MC (and there have been more than a few) has met with any success regarding resolution of symptoms, mostly because the Mayo has an unwritten policy of snubbing Dr. Fine's research and the tests offered at EnteroLab, so that policy prevents the doctors there from performing meaningful tests for food sensitivities. With that in mind, I agree that it would be pointless (and maybe even counterproductive) to show them those results. I don't have any thoughts on showing then any other records.
Good luck with the appointment.
Tex
The GI department at the Mayo is currently rated as the number one department in the nation for GI issues (the last time I checked). They should be well-qualified to do what you are expecting of them.
To date (to the best of my knowledge), no member here who has gone to the Mayo for help with their MC (and there have been more than a few) has met with any success regarding resolution of symptoms, mostly because the Mayo has an unwritten policy of snubbing Dr. Fine's research and the tests offered at EnteroLab, so that policy prevents the doctors there from performing meaningful tests for food sensitivities. With that in mind, I agree that it would be pointless (and maybe even counterproductive) to show them those results. I don't have any thoughts on showing then any other records.
Good luck with the appointment.
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.
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Gabes-Apg
- Emperor Penguin
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- Location: Hunter Valley NSW Australia
Rich
I hope the appointment/tests bring you the answers you seek.
In 'sage Gabes' style I will also say, please have realistic expectations of the possible outcomes.
My experience and observations via the journey of 1000 or more people here, no treatment protocol can replace benefits and healing via strict diet compliance, removal of major trigger ie stress/fatigue.
Take care
I hope the appointment/tests bring you the answers you seek.
In 'sage Gabes' style I will also say, please have realistic expectations of the possible outcomes.
My experience and observations via the journey of 1000 or more people here, no treatment protocol can replace benefits and healing via strict diet compliance, removal of major trigger ie stress/fatigue.
Take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Rich,
I went to the Mayo Clinic a year ago and saw Dr Pardi, he does research in MC, his focus was finding what medication works. Diet was not discussed as being important and he thought I should stay on Entocort for as long as needed. It was a month after that appointment I found this website and made major diet changes, my symptoms are better managed now with diet than with Entocort with no diet changes.
Sounds like you have other issues to discuss with them so hopefully they will have some answers for you. They did want all of my medical information from the gastroenterologist including xrays. I found it interesting their radiologist changed my diagnosis from LC to CC.
Good Luck with your appointment.
I went to the Mayo Clinic a year ago and saw Dr Pardi, he does research in MC, his focus was finding what medication works. Diet was not discussed as being important and he thought I should stay on Entocort for as long as needed. It was a month after that appointment I found this website and made major diet changes, my symptoms are better managed now with diet than with Entocort with no diet changes.
Sounds like you have other issues to discuss with them so hopefully they will have some answers for you. They did want all of my medical information from the gastroenterologist including xrays. I found it interesting their radiologist changed my diagnosis from LC to CC.
Good Luck with your appointment.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Donna,
I will assume that your diagnosis was changed after a colonoscopy (at the Mayo) provided new biopsy samples. Actually its not uncommon for MC to segue back and fourth between LC and CC. That characteristic has been well documented in the literature. If your diagnosis was changed based on a reexamination of your previous biopsy samples, though, that would be remarkable.
IMO, Dr. Pardi is one of the foremost GI specialists/MC authorities in this country. It's a crying shame that the Mayo won't allow him to recognize and utilize the information available in Dr. Fine's research and the EnteroLab tests.
Tex
I will assume that your diagnosis was changed after a colonoscopy (at the Mayo) provided new biopsy samples. Actually its not uncommon for MC to segue back and fourth between LC and CC. That characteristic has been well documented in the literature. If your diagnosis was changed based on a reexamination of your previous biopsy samples, though, that would be remarkable.
IMO, Dr. Pardi is one of the foremost GI specialists/MC authorities in this country. It's a crying shame that the Mayo won't allow him to recognize and utilize the information available in Dr. Fine's research and the EnteroLab tests.
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.
Tex,
Actually they used my old biopsy results and their pathologist ( I called him a radiologist previously) changed the diagnosis to CC, guess I am glad he found something as it cost me 800 dollars for him to read biopsy samples.
I question Dr Pardi 's clinical expertise of the disease, when he listened to my bowel sounds and heard how active and loud they were, he asked if I had eaten lunch. Based on this forum and others experience, I now know that is a common symptoms of MC.
I would not recommend going to Mayo for MC, the entire visit cost me about 2000 dollars, and I did not find anything new that could help me. This forum has given me the best information and hope for better days.
Thank you,
Actually they used my old biopsy results and their pathologist ( I called him a radiologist previously) changed the diagnosis to CC, guess I am glad he found something as it cost me 800 dollars for him to read biopsy samples.
I question Dr Pardi 's clinical expertise of the disease, when he listened to my bowel sounds and heard how active and loud they were, he asked if I had eaten lunch. Based on this forum and others experience, I now know that is a common symptoms of MC.
I would not recommend going to Mayo for MC, the entire visit cost me about 2000 dollars, and I did not find anything new that could help me. This forum has given me the best information and hope for better days.
Thank you,
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Wow! I suppose for that kind of money, he figured that he was obligated to come up with something noteworthy.Donna wrote:Actually they used my old biopsy results and their pathologist ( I called him a radiologist previously) changed the diagnosis to CC, guess I am glad he found something as it cost me 800 dollars for him to read biopsy samples.
But of course, that raises the question of how can the interpretation of those biopsy slides be so arbitrary, when the respective criteria for each type of diagnosis (either LC or CC) are so rigidly defined (and so uniquely different). Clearly, there's a lot less accuracy in many diagnoses handed down, than is claimed. That's kind of a depressing thought, but frankly, that confirms what I have long suspected. It's the cases where MC exists, but the pathologist fails to find it (or at least fails to report it), that bother me the most.
And to be honest, your assessment of Dr. Pardi's skills doesn't surprise me either.
I was trying to be upbeat, and give him the benefit of the doubt, based on the many research reports that bear his name, and the professional reputation of the GI department at the Mayo, but I've always wondered if his failure to recognize the association of food sensitivities with MC was actually due to a policy of the GI department at the Mayo, or his own personal opinion. Apparently, it's the latter, because as you correctly pointed out, just about any member here would immediately recognize that sound, whenever they hear it. That's sad, that a GI doc in his position wouldn't recognize it. 
I've noticed something else. They've changed the information about the association with food sensitivities on their website, since I published the book back in 2012, because I verified all the references just before the book was published. On page 73, I even included this paragraph:
Here's reference 3:Even the Mayo Clinic has begun to endorse diet changes as the first line of treatment for MC
To add additional support for a dietary approach, the gastroenterology department at that highly-respected institution has apparently experienced an epiphany of sorts, because their website now recommends that patients with MC should try diet changes first, and if that doesn’t bring remission of symptoms, then they should see their doctor about a prescription for a medication to help suppress their symptoms.3
They've edited out the previous reference to changing the diet as a first line of treatment. Here's what that paragraph says now:3. The Mayo Clinic staff. (2010, October 2). Collagenous colitis, lymphocytic colitis: Definition. Mayo Foundation for Medical Education and Research. Retrieved from http://www.mayoclinic.com/health/collag ... is/DS00824
Hmmmmmmmm. Apparently they aren't learning much about MC as the years go by.The symptoms of microscopic colitis can come and go frequently. Sometimes the symptoms resolve on their own. If not, your doctor can suggest a number of effective medications.
Thank you for your very enlightening response. I appreciate the information.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex
They might be learning lots, but because it goes against the published information and accepted protocols of the GI tribe, they may not want to admit it??
Polly's post of this week - about Knowledge and Wisdom???Hmmmmmmmm. Apparently they aren't learning much about MC as the years go by. sigh
They might be learning lots, but because it goes against the published information and accepted protocols of the GI tribe, they may not want to admit it??
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Rich,
I don't have personal experience with the Mayo Clinic but my girlfriend works daily with the GI docs at Shands UF and has for 30 years. Her stepson got ulcerative colitis and after working w/ GI docs at 3 hospitals in N Florida ended up going to the Mayo Clinic in Rochester. One thing that really surprised my girlfriend was that the GI docs at Mayo in Rochester were readily available by email for followup questions so try to get a business card or an email of the doc you are seeing in case questions come up after visit. My girlfriend was shocked when the Dad of the U.C. patient would send lengthy emails to the Mayo GI doc and get lengthy emails back.
She said she thought that the Mayo docs must have a much much smaller patient load than the Shands/UF docs because the Shands/UF docs simply do not have the time to do patient emails, it is not that they don't want to but flat out don't have the time.
Brandy
I don't have personal experience with the Mayo Clinic but my girlfriend works daily with the GI docs at Shands UF and has for 30 years. Her stepson got ulcerative colitis and after working w/ GI docs at 3 hospitals in N Florida ended up going to the Mayo Clinic in Rochester. One thing that really surprised my girlfriend was that the GI docs at Mayo in Rochester were readily available by email for followup questions so try to get a business card or an email of the doc you are seeing in case questions come up after visit. My girlfriend was shocked when the Dad of the U.C. patient would send lengthy emails to the Mayo GI doc and get lengthy emails back.
She said she thought that the Mayo docs must have a much much smaller patient load than the Shands/UF docs because the Shands/UF docs simply do not have the time to do patient emails, it is not that they don't want to but flat out don't have the time.
Brandy
When I asked my GI about diet he said many of his patients feel better eating a low carb/low gluten diet.
the article does at least mention diet:
Questions to ask your doctor...
•Are there any dietary restrictions that I need to follow? Would changing my diet help?
What you can do in the meantime...
You may find some relief from persistent diarrhea by making changes to your diet:
•Eat bland, low-fat foods.
•Avoid dairy products, spicy foods, caffeine and alcohol.
Diet and medication changes
Treatment usually begins with changes to your diet and medications that may help relieve persistent diarrhea. Your doctor may recommend that you:
•Eat a low-fat, low-fiber diet. Foods that contain less fat and are low in fiber may help relieve diarrhea.
•Discontinue any medication that might be a cause of your symptoms. Your doctor may recommend a different medication to treat an underlying condition.
the article does at least mention diet:
Questions to ask your doctor...
•Are there any dietary restrictions that I need to follow? Would changing my diet help?
What you can do in the meantime...
You may find some relief from persistent diarrhea by making changes to your diet:
•Eat bland, low-fat foods.
•Avoid dairy products, spicy foods, caffeine and alcohol.
Diet and medication changes
Treatment usually begins with changes to your diet and medications that may help relieve persistent diarrhea. Your doctor may recommend that you:
•Eat a low-fat, low-fiber diet. Foods that contain less fat and are low in fiber may help relieve diarrhea.
•Discontinue any medication that might be a cause of your symptoms. Your doctor may recommend a different medication to treat an underlying condition.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn