New to this group

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

User avatar
Gayle
Adélie Penguin
Adélie Penguin
Posts: 221
Joined: Sat May 30, 2009 2:04 pm
Location: Minnesota

Post by Gayle »

Gloria said:
My G.I. is a consultant for Mayo, but he's pretty clueless about treating MC, other than to prescribe Entocort. I've tried to educate him, but he politely listens and continues on his way.
Fascinating ... do you really mean that this Doc WAS on staff at Mayo, but has left to enter private practice? I've never heard of a Doc practicing in a remote location claiming to be a "consultant" at the Mayo -- as they don't need consultants. They are the consultants. It is possible that he did part, or all, of his G.I. residency/fellowship at Mayo?

Nor have I ever heard of any Doc claiming consultantship status in conjunction with the Cleveland Clinic, or with Johns Hopkins, or anywhere else. Please do us a favor and ask him to explain that status the next time you have to go to get your prescription re-filled. :wink:

Gayle
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Gayle,

With all due respect, I really don't believe that it is Gloria's duty to question her doctors "consultant" claims, just to satisfy your ego. Surely you are aware that none of the rest of us are interested in the details of her doctor's consulting claims. There are much better uses for the time available to her during her appointments.

Your post leaves the impression that you just want to start a pointless argument about an irrelevant topic. We don't need pointless arguments on this board, since they just lead to unnecessary stress, and stress is not our friend.

Tex
:cowboy:

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.
User avatar
Gayle
Adélie Penguin
Adélie Penguin
Posts: 221
Joined: Sat May 30, 2009 2:04 pm
Location: Minnesota

Post by Gayle »

Tex,

AND with all due respect back ...

Ah-contraire – argument not being looked for. I am not prepared or interested in an arguement, I am merely interested in learning the basis of this statement. Whether Gloria should choose to ask, or choose not to ask, seems to me to be her decision. If she chooses to ask, then she can relay back the answer. Simple as that.

We live in a world of false claims, never hurts to find out what these claims mean does it? In my book, a bit of skepticism is healthy.

Gayle

"Believe only half of what you see, --none of what you hear."
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Gayle wrote:We live in a world of false claims, never hurts to find out what these claims mean does it? In my book, a bit of skepticism is healthy.
Well, I agree. However, it places Gloria in the awkward position of apparently challenging her doctor's integrity, to satisfy someone else's curiosity. She has nothing to gain by doing that, but she could easily alienate her doctor in the process.

Such tactics remind me of a time when I was in grammar school (in a very small town, many moons ago) and the principal made an announcement that restricted certain school activities (the details of which I don't remember). As boys will do, a group of us were discussing it during recess, and we soon worked ourselves into the grammar school equivalent of a lynch mob mentality. LOL.

One boy said, "Let's go down to the principal's office and get this straight right now", as he started pushing another boy in that direction, ahead of him. After several of us pointed out that if he was so anxious to confront the principal, then he should be the one in the lead, and the first one in that door, that squelched the mutiny. LOL.

Gloria is certainly free to do what she wants, but if I were in her shoes, I wouldn't even consider it, because for all practical purposes, it macht nichts.

Tex
:cowboy:

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.
jgivens
Gentoo Penguin
Gentoo Penguin
Posts: 315
Joined: Thu Dec 27, 2012 1:35 pm
Location: Kalamazoo, MI

Post by jgivens »

Thanks, Zizzle and Leah. I am going to hope that the MC was Prilosec induced and will go away once I stop it, but I am also going to continue my GF/DF/SF diet till I am "cured", start to see some positive results, or decide that eating was overrated anyway and just stop :wink:

I have been in health care long enough to know that Mayo is a great place and so is Cleveland Clinic and U of M, etc, etc, BUT they are only as good as the specialists who deal with your specific problem and if they don't, they don't. I found the name of a doctor who has written about and has an interest in MC at Cleveland Clinic and I know that I have options of either Univ of Chicago or Cleveland. I feel lucky that I have a lot of resources fairly close to home.

Speaking of that, how does one travel when having these symptoms. Even when I am not having D, if I start with spasms and cramping out of nowhere, I can be quite nauseated in no time flat. Since it doesn't take much to make me car sick, that will push me over the edge. Our daughter lives in Atlanta and more importantly our 3-1/2 granddaughter is there. We were not able to drive down for Christmas but would really like to go see them all later this month. We usually do the 13 hour drive all in one day. Are we going to have to do it in two days now? That just makes me feel really, really old!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
User avatar
JFR
Rockhopper Penguin
Rockhopper Penguin
Posts: 1394
Joined: Fri Mar 30, 2012 8:41 am

Post by JFR »

Hi Jane,

I understand about travel problems. There are a lot of people here who seem to be a lot braver than I am because I still tend to avoid it while other are more intrepid. At my very sickest, last spring, my daughter got married in St Lucia where she now lives and I couldn't go. At that time I was in and out of the bathroom all day and night and just beginning to get a handle on food. Traveling to St Lucia was simply impossible. I still have not met my son-in-law because he can't come to this country until he gets through the visa process which isn't easy. It still makes me sad but my daughter understood so we're ok.

Having this disease is a matter of adjustment, not just adjusting our diet but adjusting our attitudes. What we were able to do easily once now takes a lot more planning. So if you need to make the trip in 2 days instead of in one then that is what you will do. Even though its natural to wish things were different than they are, I have found that staying in that place is just counterproductive. You'll figure out how to live with this. It just takes time and patience.

Jean
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Gayle,

My GI didn't tell me that, a couple of teachers at my school did and they highly recommended him.
Jane wrote:I have been in health care long enough to know that Mayo is a great place and so is Cleveland Clinic and U of M, etc, etc, BUT they are only as good as the specialists who deal with your specific problem and if they don't, they don't.
I completely agree with Jane's statement. When I thought I'd need brain surgery for a tumor near my brain stem (no longer necessary because it's calcified), Mayo was my first choice for the surgery. But they are not renowned for their treatment of MC; not many GIs are. They are becoming better at diagnosing it, and many recognize that Entocort is the drug of choice, but very few recommend dietary changes. Mayo's dietary suggestions on their website is to eat a low-fat, low-fiber diet and avoid NSAIDS. Those are good suggestions, but they don't go far enough. I understand why doctors are hesitant to suggest more extensive dietary changes. There are so many variations of restrictions and food reactions here, and patients following a doctor's advice could quickly become disillusioned.

That's why most of us here don't look for a doctor's guidance through this maze we call MC remission. They simply don't have enough experience treating it with diet. There's more information here because hundreds of people here have lived through the ups and downs of MC and overcome it. We'll never get that in a doctor's office.

Gloria
You never know what you can do until you have to do it.
Deb
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sat Nov 20, 2010 7:01 pm
Location: Previously MN now GA

Post by Deb »

Fascinating ... do you really mean that this Doc WAS on staff at Mayo, but has left to enter private practice? I've never heard of a Doc practicing in a remote location claiming to be a "consultant" at the Mayo -- as they don't need consultants. They are the consultants
Gayle, as a fellow Minnesotan, I'm sure you're aware of Mayo's mergings
and affiliations with small clinics throughout the country (pending worldwide). Mayo provides their expertise and research information to these clinics via a subscription fee. Deb

http://minnesota.publicradio.org/displa ... filiation/
User avatar
Gayle
Adélie Penguin
Adélie Penguin
Posts: 221
Joined: Sat May 30, 2009 2:04 pm
Location: Minnesota

Post by Gayle »

Deb said:
Gayle, as a fellow Minnesotan, I'm sure you're aware of Mayo's mergings
and affiliations with small clinics throughout the country (pending worldwide). Mayo provides their expertise and research information to these clinics via a subscription fee.


And yes, you bet I am aware. I grew up less than 35 miles from the from entrance to the Plumber building in Rochester. I personally never had need of any services at the clinic in all those years. But grandparents, aunt’s, uncles as well as parents, many neighbors and friends were seen there over the years, for a vast assortments of ailments.

It was in many ways a very fortunate place to grow up, -- which was never fully appreciated until learning how many people there are with no such advantage in their ’hood’. As such, I have been something of a front row observer as The Clinic has grown from that small organization of Docs, officed in that one building when I came to know it, --- to something of a world wide powerhouse in the Medical Science, Education, Research and Service. Rochester has not been unfamiliar stomping grounds for me for reasons other than being a patient at the Clinic.

Currently, I am being served very well as, a patient in the GI Department at Mayo Scottsdale.

Mayo Corporation has indeed taken over, (owns and operates), much of the health care market in Southern Minnesota, including some areas in northern Iowa and western Wisconsin. There are of course, the 2 larger satellites in Jacksonville, FL and Phoenix, AZ -- with their outreach networks. Possible affiliations and joint ventures are continually being looked at and evaluated, as the new health care laws are taking shape. All the big Health Care outfits are maneuvering and jockying to do the same, --- .... --- all will not survive. :sad:

Does the Clinic serve many people world wide, on a consultancy basis – YOU BET it does …. in many different ways, with many voices, and in may different venues.

The Mayo “outpost” at the MOA has indeed been intriguing to me. Investigating that, -- up close and personal, -- has been on my ‘bucket list’ of thing to do. But somehow when I have been there, there is just ‘so much to do, so little time to do it’. Thus, -- I have yet to visit that area of the Mall. However, I have heard that they will not be going forward with plans to expand that facility into anything more than just a PR site.

Have you been there?

BTW … That site was originally viewed in the Twin Cities, as Mayo Corp. ‘trying to get a toe-hold in the Twin Cities health care market’. :twisted: (i.e. -- Mayo was suspected of instituting turf war activity). :twisted:

http://health.usnews.com/best-hospitals ... -disorders

As "transparency" and ratings have now become increasingly important to the public as tools for attempting to try to find their way around in the health care arena, such things as this web-site are becoming increasingly available to the public. This is where my statement regarding the ranking of Mayo GI came from. This has been noted/quoted earlier here by none other than Tex, in regard to some other topics on this chat line. Does this guarantee everyone will be/is equally satisfied with this or that or any institution? Of course not. But these ranking systems try to use statistical methodology by using a numerical scale in attempt to qualify/quantifying outcomes. Supposedly this might to give people an idea of where the best chances (odds) for treatment in particular areas might be. As I’ve said before here on this chat “God does not live in a bottle at the Mayo Clinic -- or anywhere else for that matter”.

Cheers,
Gayle
User avatar
birdlover3
Adélie Penguin
Adélie Penguin
Posts: 202
Joined: Mon Dec 31, 2012 2:04 pm
Location: Illinois

Post by birdlover3 »

Jane,
I had my colonoscopy and endoscopy at the Univ. of Chicago GI dept. last October 2012. I was a little disappointed. I do NOT have that pathologist report, and after reading that people say to get that report that will be first on my list when I go back. I had to ASK what 'type' of MC I had after learning on the internet there are 2 different types. I saw an entern or someone that seemed to know about this disease and the attending physician also visited with me, but was disappointed in the amount of information concerning diet, what to do next, etc. that was presented. When I did my followup after the tests, I was having 1 good month out of 24 (ironic isn't it???) so I suppose that is why I didn't have more questions for them, however they did say to call them if things flared up again, which I need to do. They mentioned giving me Lomotil so I'm going to ask them about that when I call. That I believe is the next step they will try with me.

I don't have any cramping and no pain at all...it's just that "D" and continual bowel 'growling' that are my symptoms. Plus I have weight loss and fatigue.

Just thought I'd pipe in concerning Univ. of Chicago.
Deb
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sat Nov 20, 2010 7:01 pm
Location: Previously MN now GA

Post by Deb »

And yes, you bet I am aware. I grew up less than 35 miles from the from entrance to the Plumber building in Rochester

Gayle, My condo overlooks the Mayo buildings and I walk to my appointments there.
My PCP there wasn't very informed about my MC. I haven't pursued the GI's there, mainly due to a high deductible on my insurance and my believing that the information here is probably more valuable. Deb
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Birdlover,

I live in the Chicago area and am not aware of anyone in the area who is really good at treating MC. My definition of someone who is competent at treating it is someone who readily sees the connection with diet and who recognizes the role that mast cells have in digestive and other issues. There may be some informed GIs out there, but I haven't heard about them.

Gloria
You never know what you can do until you have to do it.
User avatar
birdlover3
Adélie Penguin
Adélie Penguin
Posts: 202
Joined: Mon Dec 31, 2012 2:04 pm
Location: Illinois

Post by birdlover3 »

Gloria,
They took biopsies of my colonoscopy and endoscopy and did a pathology test. They told me that gluten was NOT an issue for me so they must have SOME knowledge of food issues. They also asked me if I drank alot of coffee or carbonated drinks. Do you know how much coffee is a problem? I DO drink alot of coffee in the morning. Hmmm. maybe I should try eliminating that and see if that makes any difference. Is tea also an issue? Anything you can inform or educate me about is helpful. Univ of Chicago is a teaching hospital so you first see the intern or whoever, then he/she goes and talks to his/her boss, then the attending will come in to discuss so you get the benefit of that but for the money spent, I would think you would get the BEST right up front, hence my disappointment.
Deb
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sat Nov 20, 2010 7:01 pm
Location: Previously MN now GA

Post by Deb »

They told me that gluten was NOT an issue for me so they must have SOME knowledge of food issues. They also asked me if I drank alot of coffee or carbonated drinks. Do you know how much coffee is a problem
Birdlover, many of us have been told that gluten is not an issue and that's simply not true for most of us. Most doctors don't believe there is a connection between what we eat and MC. Some of us have issues with coffee when we're reacting; some of us don't. I cut it out when I was reacting as it seemed to bother me a bit. I now drink it but usually only a cup in the morning. Deb
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

I agree with what Deb wrote. Most doctors don't recognize gluten sensitivity; they're looking for celiac disease only. When they don't find it due to their inadequate tests, they declare that you don't have to worry about gluten. A far more reliable test is done by Enterolab. It tests the stool where the antibodies show up much sooner than in the blood. Tex explains it here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17469

I don't drink coffee, so I can't answer your question. You can do a search of the board to see what others have posted about coffee by clicking on the "Search the Archives of the Discussion Board" link at the top of each page.

Gloria
You never know what you can do until you have to do it.
Post Reply

Return to “Main Message Board”