I have big news for The Potty People!!

Zizzle · Post by **Zizzle** » Tue Aug 21, 2012 11:47 am

Wow, can you send me a link or citation for that Canadian study?

Is it this one?

http://www.ncbi.nlm.nih.gov/pubmed/21517923

Post by **tex** » Tue Aug 21, 2012 12:03 pm

That's the one, but here's the entire article, in 4 sections (assuming that you're registered to access Medscape articles):

http://www.medscape.com/viewarticle/743 ... mp&spon=20

Tex

Gayle · Post by **Gayle** » Tue Aug 21, 2012 12:09 pm

Zizzle,

Regarding the PP membership numbers -- The number of folks who subscribe and post here is the tip of the iceberg I am SURE. I personally know of 2 folks, one a good friend who was diagnosed with CC about 1 month after I was diagnosed, and the other a long term acquintance. Although I have told them about this site, neither of them had any interest in this kind of communication. And that is their personal choice.

I'm on the run now today, but a quick search of MeSH for any Pub-Med articles by a Dr. William Sanborn at UC San Diego/ChiefGI may yield something on MC. He is mostly in Crohns, but might be worth a quick search to see if he has ever been involved in any articles on MC.

Gayle

Zizzle · Post by **Zizzle** » Tue Aug 21, 2012 12:15 pm

Uhh, Tex? That article says this in the beginning:

Patients at high risk of acquiring MC are typically older women and patients with malignancies.[3,8]

Does that put me in the MALIGNANCY category? Because my stupid skin disease has the same risk!!

Post by **tex** » Tue Aug 21, 2012 2:12 pm

My guess is that most people who have MC will never join this site because they either trust their doctors completely, or they have no interest in controlling their symptoms by diet (or both).

Zizzle, you have to remember that those articles are written by doctors, and we're all familiar with their opinions on this disease and the demographics that they tend to assume about the disease. I'm not an older woman either, and even though I've been diagnosed with cancer at least a couple of times, as far as I'm aware, I've never actually had it. I realize it's not politically correct to categorize doctors this way but their typical assumptions and agendas regarding the various diseases are not exactly politically correct, either. LOL.

Tex

Joefnh · Post by **Joefnh** » Tue Aug 21, 2012 2:47 pm

Way to go Zizzle!!! This is certainly a great and amazing opportunity. Thanks so much for your activism and tenacity in working on this important issue for all with MC

Gayle · Post by **Gayle** » Tue Aug 21, 2012 4:35 pm

Tex said:

My guess is that most people who have MC will never join this site because they either trust their doctors completely, or they have no interest in controlling their symptoms by diet (or both).

This guess would be an assumption. And ‘assumin’ things can often be problematic.

My friend who was diagnosed with CC shortly after I was, was actually my first source of information regarding going gluten free. This pre-dated my find of the Microscopic Colitis Support Group … AKA The Potty People. This information/advise did come through her GI Medical practice in Oregon. The GI who diagnosed me had said “You can eat everything, What you eat makes no difference in this disease.” I had kind of thought at the time “Well this sounds good --- but I wonder?” And then came this advise from my friend!! BTW, my friend holds a Doctorate Degree, although not in Medicine, or (Engineering). Interested in all things, including some of the Alternative Medicine offering such as acupuncture and herbs etc..

The other person that I know who has been diagnosed with CC I have not talked with in a while. She was doing well on Entocort last time I spoke with her. Her medical history includes the fact that she has had a Whipple procedure (successfully), the aftermath of which does demand some dietary accommodations. The CC, and thus this kind of group, is not a top priority with her --- I think understandably.

Best,
Gayle

Post by **tex** » Tue Aug 21, 2012 6:19 pm

Gayle wrote:This guess would be an assumption. And ‘assumin’ things can often be problematic.

Yes, making assumptions can definitely lead to problems, and that's why I try to avoid making assumptions unless it's necessary in order to solve a problem for which there are insufficient known input parameters, but my guess was not an assumption, (that's why I referred to it as a "guess"). You chose to assume that my guess was an assumption.

An assumption amounts to choosing the most natural (or traditional) option, while a guess is based on what's most likely. A guess can also be based on a belief or a speculation, but that's not necessarily true for an assumption. Some assumptions are guesses, but guesses are not assumptions.

The examples of cases of MC that you cited among your friends are most definitely not typical of people who have MC -- they are clearly exceptions. Most people who have MC do not hold a PhD, nor are they already following a strict diet because of a rare medical procedure. Yet you chose to "assume" that they would serve as examples of typical CC patients. They do provide evidence of why even non-typical MC patients are not likely to join this board.

I stand by my guess.

Tex

carolm · Post by **carolm** » Tue Aug 21, 2012 7:37 pm

Way to go, Zizzle! Definitely an impressive effort and an encouraging response.

Hey I also disagree with the "over 70' stat. If they REALLY thought that, maybe that's why MC never received much attention before- I mean the 'women over 70" group would be such a small group it might not have been considered a disease worth worrying about, since it would effect so few people, and treated like something else that just plagues us in our later years. That obviously incorrect stat needs to be flushed out into the open.

Anyway, Zizzle, I'm impressed. Tex, I can not wait to see the book.

You both are an inspiration.
Carol

harvest_table · Post by **harvest_table** » Tue Aug 21, 2012 7:50 pm

Zizzle...

The dx of MC or ME stands alone however many members here also have whipples, hashimoto's, celicac, ibs, prurigo nodularis, graves, food allergies or intolerance, chrons, thyroditis, uc, arthritis, fibromyalgia, and the list goes on as you know.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3715

If the attending physican is aware of previous issues it would be worth noting it.

Can they do that?

Thanks much,

Joanna

Sheila · Post by **Sheila** » Tue Aug 21, 2012 8:28 pm

Zizzle, you are truly impressive. Thank you for you tenacity, especially considering all of the stress you have been under.

I guess a name more dignified than "Potty People" would have a better chance of being taken seriously by a medical forum. I do love the name but it doesn't do justice to how awful and life altering this disease is to all of us.

Between Tex's book and Zizzle's great effort on our behalf, we are on our way to becoming legitimate. Tough being the bastard child of IBD and IBS.

Sheila W

mzh · Post by **mzh** » Wed Aug 22, 2012 7:15 am

Zizzle, you SIZZLE!

FWIW, the name of this group is "Microscopic Colitis Support Forum". It's at the top and bottom of every page so it must be that. But as long as the powers-that-be can find it, that's wonderful!

Gayle · Post by **Gayle** » Wed Aug 22, 2012 9:26 am

Tex,

I believe that if you re-read my original post on this subject you will see that nowhere did I claim that the two individuals that I have sighted were typical. What I said was that there are 2 MC affected individuals that I personally know of who were not interested in the site. (Inference being that there are many people, who for their own reasons, don’t climb on these sites.)

But your use of the word typical of course begs another question – what/who, is/are, typical persons that have MC, or for that matter, any of the IBDs? As I read here – very common (and good) advise here on this site often is “That we are all different”?

However --- My original contention was that the number of people who have registered on this board are only the tip of the iceberg as far as the numbers of people diagnosed with MC is concerned. I believe it was Ant who was nice enough to give a numerical accounting from a historical point of view, which illustrated something of a trend. I’m sure that was a fairly accurate accounting as far as those raw numbers were concerned.

If the subject we are really talking about is the importance of getting the ICD-10-CM diagnosis coding changed to bring MC and its subdivisions to a more prominent position in the coding system, (and that was what the thread was about) then it certainly would seem to me that those numbers, which are way more than just the number of people who have registered on this site, is very, very important to this project.

The number of people who have registered on this site is just a little under 1300. Some of them are deceased, some of them (many that were posting when I came along) have disappeared. Occasionally an “oldie” will show up, some don’t ever surface again. Maybe they had a reason to leave, maybe not … what is happening with Facebook is being termed “Facebook Fatigue”. Possibly some folks just develop PP fatigue.

So, you certainly may stand by your guess -- and I will stand by mine.

Best,
Gayle

Zizzle · Post by **Zizzle** » Wed Aug 22, 2012 9:48 am

If one goes by the published statistics, that most MC sufferers are over 70, my GUESS is that they are largely not computer and internet savvy, so they don't know to look for us. They may also come from a generation who learned to always trust their doctors and not go elsewhere looking for help. A fair number are probably in hospitals and nursing homes getting band-aid treatments to make their D manageable for the staff. As we know, another subset probably hasn't been told by their doctor they have MC, because the doc perceives the result as "mild inflammation," as opposed to a disease worthy of attention. Then there are those who post on other forums, who mentioned they stopped by the Potty People site, and were freaked out by our extreme dietary avoidances. Upon first glance, I'm sure there are people who don't want to hear what we have to say, or choose never to post, and therefore don't "join."

Then there are those with celiac and much more serious and debilitating autoimmune diseases, who happen to also have MC. I imagine MC is the least of their worries.

Tex probably has access to stats about how many visitors we have to the site every day, week, month, etc. I'm sure the numbers are high, based on the visitor flags I see everytime I visit.

Gayle · Post by **Gayle** » Wed Aug 22, 2012 10:18 am

Zizzle said:

If one goes by the published statistics, that most MC sufferers are over 70, my GUESS is that they are largely not computer and internet savvy, so they don't know to look for us. They may also come from a generation who learned to always trust their doctors and not go elsewhere looking for help.

While there may be some generalized truth to this statement --it doesn't apply to either of the 2 people that I referenced.

I found an old (2006) “epidemiology of microscopic colitis population based study” which was done in Olmsted County of Minnesota. What is unusual about Olmsted country is that everyone in the county either uses the Mayo Clinic or the Olmsted Medical Center for health care needs. Their unified database therefore covers the total population of that county. http://gut.bmj.com/content/56/4/504.long

Somewhere else (I believe) it was in one of the Mayo studies I vaguely remember it being said that the incidence of MC was about equal to the incidence of Crohns disease (I believe that was also based on Olmsted Country statistics) and seemed to be increasing. No reason(s) for this increase in incidence was offered -- at least that I recall.

Cheers,
Gayle