prevelance of MC

scrowley · Post by **scrowley** » Sat Oct 15, 2011 11:40 pm

How come there are lots and lots of people signing up on this website all having the same disease but its meant to be really rare?
do you think there are loads of people out there with this just undiagnosed and now the doctors are better at diagnosing it?

Post by **tex** » Sun Oct 16, 2011 8:55 am

They couldn't diagnose it in the past, because they never looked for it, (because they considered it to be a rare disease). You can't diagnose MC unless you look for it, because you have to take biopsies, (from the right places), and look for the markers of MC in the biopsy slides.

It's not rare. As far back as 2004, a Swedish researcher showed that it was at least as common as Crohn's disease in Sweden, and it was almost as common as UC. Diagnostic rates have increased so much since then, (due to more GI docs actually looking for the disease), that I'm pretty sure that it's more common than both Crohn's disease and UC put together. Besides, one study suggests that at least 26% of the general population have the diagnostic markers of LC, but they are asymptomatic. 26% of a group being screened for cancer, (with no clinical symptoms of LC), had the markers that qualify for a diagnosis of MC.

That certainly kills any claims about it being rare.

http://www.medscape.com/viewarticle/487838

Tex

sarkin · Post by **sarkin** » Sun Oct 16, 2011 9:23 am

Sheila,

AHA! Tex has given you the hard facts - but I also want to congratulate you for asking this question. I have had the same thought - and I further think there are tons of people out there with 'heartburn' or headaches or aches and pains or - something - who would be lucky to have our "rare" diagnosis, because then they'd find out how to get hold of their health. (I'm not saying we're lucky to have the symptoms - but we sure are lucky to have this forum for these questions and shared thinking... and for the hope we get here for turning this MC beast around.)

MBombardier · Post by **MBombardier** » Sun Oct 16, 2011 11:48 am

My GI told me that he has 20 MC patients in his practice alone. That doesn't sound "rare" to me.

garina · Post by **garina** » Sun Oct 16, 2011 11:55 am

Sara,

How true your statement is -- having MC is a "bittersweet" diagnosis, in that I am thrilled to know there is something I can do to turn the dx around. Had it not been for this dx of CC, I would still be struggling much worse with an uncontrollable bathroom situation. And, a scary one it is. I thought, as did many others, that we'd be so malnutritioned and that there would be no end.

I do thank the doctor that did the colonoscopy for even testing for it, but most of all, I thank this site for hope. No one even offered a solution until I found this group.

I like your thinking.

garina

harma · Post by **harma** » Sun Oct 16, 2011 12:21 pm

Wondering how many "IBS" labelled patients are out there, having actually LC or CC, poor them, it's not rare (as this disease is not rare), that they think is "psychological". I thought for 10 years my bowel problems were "between my ears"

bevfromwa · Post by **bevfromwa** » Sun Oct 16, 2011 2:55 pm

While I do admit that my GI was smart enough to test for and dx my LC, Dr. "diet has nothing to do with it" changed the subject when I asked how many MC patients he had. He could offer only drugs, and simply loved (barf) Metamucil Wafers. The ingredients read like a horror story. I soon learned about using fiber when I joined this group. But I will admit that while I was following his advice (I couldn't stomach those wafers so switched to powder) my cholesterol greatly improved.

I'd be curious to hear statistics as to how many people have this dx, is it rare as in 1 in 100K, or what?

Nice email from Dr. Fine inviting me to his conference. (I liked that invitation better than the letter from Obama, Dear Beverly, send money!) I'm sure if we can get our hands on materials resulting from the conference, it will make mighty interesting reading.

Beverly

Gabes-Apg · Post by **Gabes-Apg** » Sun Oct 16, 2011 3:43 pm

the MC diagnosis was a relief to me, then researching and talking with the people on this site, years and years of symptoms finally made sense (and i was not imagining it)

IBS will continue to be the safety net diagnosis used by doctors and specialists when blood tests, poop tests, xrays dont show the problem.
same applies if you do not fit the criteria 'assumed' by majority of GI Specialists (over 50 years of age with chronic D)

Regardless if you call it IBS, MC, UC, Crohns - IMO most people can get reasonable management of all of these conditions by figuring out their triggers, (meds, foods, stress etc) avoiding them, and follow an eating plan that suits that individual, and using meds/supplements that suit that individual.

Gloria · Post by **Gloria** » Sun Oct 16, 2011 7:12 pm

Four years ago, my GI told me that I was his second patient with MC. Now he reports that he has many patients. The difference? He routinely does a biopsy when his patient has diarrhea and is a "woman over 50." He's getting closer, but has quite a ways to go. He doesn't condemn or promote diet as a solution.

Gloria

Post by **tex** » Sun Oct 16, 2011 8:40 pm

Gloria wrote:The difference? He routinely does a biopsy when his patient has diarrhea and is a "woman over 50."

Wow! Imagine what he could do if he didn't discriminate against everyone else with diarrhea, (or anyone with GI issues in general, for that matter).

Tex

draperygoddess · Post by **draperygoddess** » Sun Oct 16, 2011 9:42 pm

I read an article recently on the internet--wish I could remember where now--that instructed doctors on how to handle patients presenting with chronic watery diarrhea and abdominal pain without other symptoms. As I recall, there were four "flags" (age over 50, family history of colon cancer, blood in the stool, and one more) that warranted a colonoscopy. If the patient didn't have one of those red flags, the diagnosis was IBS. Not surprisingly, the article mentioned that many patients were frustrated with this diagnosis.

What got me about this article was that it basically told GI's how to put off patients who exhibit symptoms of MC, instead of educating them about how to diagnose it!

Zizzle · Post by **Zizzle** » Sun Oct 16, 2011 10:40 pm

Well, doctors sure know how to keep themselves in business. I recently met up with a friend who has an apparent case of raging hyperthyroid, but she had no idea. She's been taking Ambien to sleep, Xanac for her anxiety, she's changed her bedding and PJs to deal with the night sweats, she's losing weight without trying, etc, etc. and her doctors have only offered "supportive" meds, rather than a simple blood test.

I'm going to check the CMS website to see if I can conjure up a prevalence rate for "non-infectious colitis or gastroenteritis", our current diagnosis code.