I have big news for The Potty People!!

[ant]

Dear Zizzle,

I do not feel qualified to comment on how to approach the categorization of ME. I am sure more learned people than I will comment.

notice we have 1251 members now, more than 250 in one year!

However, growth of the PP membership got me interested. So I did some sums.

On 21st August 2009 there were 406 members..... an additional 845 in three years.

On 21st August 2011 there were 899 members..... an additional 352 in the last 12 months (average of just under one a day!)

The rate of growth has indeed been amazing in the last three years and clearly seems to be accelerating.

Best, Ant

[wonderwoman]

Great work Zizzle.

Before retiring, I worked for a large insurance company. I paid Group Health Insurance claims for the state of New Jersey and know the importance of the correct ICD-9 coding.

If a decision isn't being made until the end of the year, it will be too late to be included in Tex's book.

I agree that the reference to age 70 is not correct.

[Gabes-Apg]

Awesome Awesome Awesome work!!!

heartfelt gratitude for your hard work to date to get this on the agenda, and thank you in advance for what you are doing to progress this.

although this is an USA system, with medical systems of Australia, UK, Europe etc stemming off Big Pharma, any progress to acknowledge MC as a 'codeable' condition in the USA will have flow on effects to our systems.
If they acknowledge that it is not just women over the age of 55 or 70 that have MC then that too is a creditable and worthwhile achievement.

on a slightly side issue (but related) is it worth asking about 'non celiac gluten intolerance' or should we save that one until the next review?

love the title that has been discussed

Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

if we want them to have their own code, important that they are all in the title.....


Tex
if you have a spare 2 mins in this midst of harvest / book finalisation chaos.... in line with Ant's discussion about the membership numbers, negating the spammers are we still at creditable 1000+ plus members?

[MaggieRedwings]

Outstanding effort and work Zizzle.

I hope this comes to fruition and agree with Tex's suggestion for our referenced name.

Boo to the over 70 years "stat">

Love and thanks, Maggie

[mbeezie]

Awesome job Zizzle! You are doing a great service for PP everywhere. Kudos and heartfelt thanks.

Mary Beth

[Deb]

That is great news Zizzle. Thanks for all your efforts! Deb

[Denise]

Thank you for the great news!

Thank you for your efforts and hard work!

[nancyl]

Zizzle,
Kudos to you for all your hard work. It is very much appreciated.

Nancy

[tex]

Hi Gabes,

Yes, as best I can determine, we currently have over 1260 legitimate members.

Tex

[jmayk8]

Great Work Z!

[tex]

Zizzle,

FWIW, IMO it appears that MC (and all autoimmune diseases) may be a mast cell-driven disease (rather than a T cell-driven disease as is currently claimed by the medical commuity). This may not be of much help to you in making a decision about ME, because it will almost certainly be many years before the research data become available to verify (or dispute) that observation. My book (which I believe is now finally ready to upload, so that I can review a proof copy) explores the influence of mast cells on MC at length (with many, many references), in chapters 14 and 16 (and those two are the longest chapters in the book).

If you feel that it would be helpful, I can e-mail you PDFs of those two chapters.

Tex

[Zizzle]

I would love to see the 2 chapters, but for purposes of today, if it safe to say ME should be classified as a form of MC, since it is only visible through colonic biopsy under a microscope?? Perhaps lumping them together under these codes will get the medical community thinking about the impact of mast cells more??

[Polly]

FWIW, I agree with Tex about the importance of mast cells. I also think Mary Beth makes a good point when she says that most of us probably have normal numbers of mast cells in the gut, but that they tend to degranulate too readily. So, actually having a code for ME would be helpful, but it wouldn't necessarily capture the majority of mast cell problems because the biopsy for ME will likely be normal.

Polly

[Zizzle]

Here is the response I just emailed. I'll keep you posted! Notice I gave them the URL for the Potty People Index page, so we might have visitors today...

This is great news! Thank you!! The group I represent is called "Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues". They affectionately refer to themselves as "The Potty People" but I imagine you won't want to use that name. The group has 1,260 members and is growing at a rate of nearly one person per day. Clearly MC is being diagnosed at an alarming rate in recent years. The URL for the group's forum is: http://www.perskyfarms.com/phpBB2/index.php

Regarding the draft proposal, the facts about MC look good with a couple of exceptions. First, this is no longer a disease that predominantly affects the over 70 age group. It is more common in women over 50, but there are plenty of 30-40 yr olds and even young children affected. Would you need a peer-reviewed citation to consider changing the age to 50 or 60 in the following sentence: "Microscopic colitis may occur at any age, but is more common after age 70 years"?

Second, our group also represents dozens of people with Mastocytic Enterocolitis (ME), a relatively newer recognized condition caused by excess or overactive mast cells in the GI tract. Researchers believe mast cells also play a role in MC, but ME has specific diagnostic criteria for counting the mast cells in a stained colonic biopsy sample. You alude to it in this sentence: "In some cases, increased mast cells may be found in colon biopsies in some patients with chronic diarrhea, and it has been suggested that these may represent another distinct type of microscopic colitis (see Yen and Pardi). However, it appears that this will need further study before wider acceptance. Even so, this illustrates the potential for other types of microscopic colitis."

To the extent that ME is a microscopically diagnosed form of colitis, we wonder if it should be included under MC. It would be appropriate under one of the following proposed codes:

K52.8 Other specified noninfective gastroenteritis and colitis
or
New code K52.838 Other microscopic colitis

Here are a few citations about ME to prove it exists. Let me know if you need more to suggest "wider acceptance":

http://www.ncbi.nlm.nih.gov/pubmed/22577375

http://www.ncbi.nlm.nih.gov/pubmed/21499916

http://www.ncbi.nlm.nih.gov/pubmed/16519565


Finally, regarding the proposed codes, is there any chance we could move up another decimal point, making "Microscopic Colitis" a category on par with "Other specified noninfective gastroenteritis and colitis"? I realize this is asking a lot, but this is a disease that is likely to overtake Crohn's Disease and Ulcerative Colitis in incidence during the next decade, and which probably represents a huge proportion of Diarrhea-Predominant Irritable Bowel Syndrome (IBS-D) cases (all they are missing is the colonic biopsy to prove it). As your proposal states, medications can cause MC, and these are medications being prescribed to millions of Americans (NSAIDS, SSRIs, PPIs, BP meds and others). I hope and trust that the gastroenterology experts you consult with will support this.

Please let me know how else I can help to get this proposal finalized for the Sept 19 meeting. Thanks so much,

[tex]

Zizzle,

Yes, ME is another variation of MC, (there are at least 12 in all). Regarding the incidence/prevalence of MC in comparison with Crohn's, UC, and celiac disease, here's a quote from the first chapter of my book:

As early as 2004, data published by Martin Olesen and colleagues showed that the annual incidence of microscopic colitis, in its various forms, is significantly higher than is commonly believed by most medical professionals, and in fact, they found that in Sweden, the annual incidence of microscopic colitis, in its combined forms, matched the incidence of Crohn’s disease, and it approached the incidence of ulcerative colitis.24

A more recent Canadian study, published in 2011, verifies that microscopic colitis is indeed significantly more common than both Crohn’s disease and ulcerative colitis.25 The Canadian study showed that not only is the incidence of microscopic colitis significantly higher than both Crohn’s disease and ulcerative colitis, the incidence of MC is more than 60 % higher than celiac disease.

The study also verified that the incidence of MC is increasing at an average annual growth rate of 12 %, almost twice as fast as the growth rate of celiac disease. By comparison, celiac disease is claimed to be increasing at about a 7 % average annual rate. I base this calculated growth rate on a study done by the Mayo Clinic, that concluded that the risk of developing celiac disease increased to four times the initial rate, over a 50 year period, beginning in the 1950's.26

The numbers following sentences are connected with references, of course. Note that MC is at least 60% more common than celiac disease. MC is actually a very common disease, but the medical community doesn't realize it.

Tex