I have big news for The Potty People!!

[Zizzle]

But you'll have to wait until I get home. Sorry!

Tex knows...

[Polly]

Are you pregnant????

Love,

Polly

[desertrat]

So unfair! Tex! Let us in on it!

ImpatientMandy

[Martha]

If this is a guessing game, I second Polly. OR, you have discovered a cure for MC!!!!

Love,
Martha

[Lesley]

Are you there yet? Are you there yet?

[humbird753]

Zizzle - hurry up and get home!

Paula

[Zizzle]

OK, so you may not be as excited as me...but this is major progress in the fight for MC recognition and research!!

Some of you may remember I contacted the CDC/National Center for Health Statistics last year to inquire about adding an ICD-10 diagnosis code for MC. This is the first time they've updated the diagnosis codes in many years. My doctors routinely use ICD-9 codes for me like diarrhea, IBS, colitis-unspecified, and others. They don't come close to using the most accurate code for MC, and it pisses me off, because somewhere, someone is tracking these codes to see how often MC is happening in the population, and obviously they have no idea now, so no one cares about it. If they coded people properly, alarm bells might be sounding at the gastroenterology groups, within Medicare, etc.

So...I got an email today telling me they are going to consider my request at their next meeting in September!!!!!!!!

Here is the email:

This is in follow up to your request to [DP] related to a new diagnosis code for microscopic colitis in ICD-10-CM (below). We will plan to present this topic at the ICD Coordination and Maintenance Meeting on Sept. 19, 2012. You stated that you represent a consumer group of members with microscopic colitis. Could you please let us know the name of your group? Usually we list such information with the proposals.

Attached is a preliminary draft of information related to this proposed change, along with preliminary proposed new codes for the different types. Please let me know if you have any comments on this.

We will also plan to request input from medical experts on this proposed change.

Thank you for your interest in ICD-10-CM.

Problem #1: Is there a more professional sounding name for our group other than "The Potty People"?


Here is their proposed language for the proposal, which in my opinion doesn't go far enough -- it only gives MC a 2 decimal code. We want a one decimal code at least, because doctors' offices rarely code beyond the first decimal. And it doesn't include ME, so we have some work to do to prepare a response (preferably to send tomorrow!)

Microscopic Colitis

Microscopic colitis causes a watery, nonbloody diarrhea that is chronic or recurrent. There are two subtypes, collagenous colitis and lymphocytic colitis, which have become relatively common. Diagnosis requires histologic analysis of colon biopsy.

Collagenous colitis is marked by a thickened subepithelial layer of collagen. Lymphocytic colitis has increased numbers of intraepithelial lymphocytes in the colonic epithelial layer, along with increased numbers of subepithelial chronic inflammatory cells.

The changes in inflammatory cell populations, such as increased numbers of intraepithelial lymphocytes, observed in patients with lymphocytic colitis may also occur in patients with collagenous colitis. Also, the collagen thickening of collagenous colitis may be patchy, and not present in all areas. There have been reports of patients transitioning from one to another histologic pattern, which it has been suggested indicates a common basis. Since the histopathologic findings may overlap, there has been some question as to whether lymphocytic and collagenous colitis are two separate entities or part of a single disorder. However, most patients consistently maintain one histologic type or the other.

Microscopic colitis may occur at any age, but is more common after age 70 years. It is also more common in females. A number of other disorders are associated with microscopic colitis, particularly including autoimmune disorders. Some specific conditions associated include thyroiditis, celiac disease, type 1 diabetes mellitus, and rheumatoid arthritis. Certain drugs, infections, and toxins are considered potential triggers or etiological factors in microscopic colitis.

Microscopic colitis has been regarded to result from a reaction to luminal antigens, which may include dietary antigens, as well as drugs, bile salts, bacterial products, and toxins. In patients with both microscopic colitis and celiac disease, both the colitis and the enteritis respond to a gluten-free diet.

There have been cases where multiple biopsies show inflammation within the lamina propria of the colon, but diagnostic features of lymphocytic colitis and collagenous colitis are not present. It has been suggested that such cases be called “microscopic colitis not otherwise specified” (see Chetty & Govender).

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.

A request to consider creation of specific ICD-10-CM diagnosis codes for microscopic colitis, collagenous colitis, and lymphocytic colitis was received from Vera Cardinale, MPH.



References

1. “Microscopic Colitis.” Pardi DS, Kelly CP. Gastroenterology. 140:1155-1165 (2011).

2. “Lymphocytic and collagenous colitis: an overview of so-called microscopic colitis.” Chetty R, Govender D. Nat. Rev. Gastroenterol. Hepatol. 9:209–218 (2012).

3. “Microscopic colitis--lymphocytic, collagenous and 'mast cell' colitis.” Yen EF, Pardi DS. Aliment Pharmacol Ther. 34(1):21-32 (2011).

TABULAR MODIFICATIONS


K52 Other and unspecified noninfective gastroenteritis and colitis

K52.8 Other specified noninfective gastroenteritis and colitis

New subcategory K52.83 Microscopic colitis

New code K52.831 Collagenous colitis

New code K52.832 Lymphocytic colitis

New code K52.838 Other microscopic colitis

New code K52.839 Microscopic colitis, unspecified

K52.89 Other specified noninfective gastroenteritis and colitis
Delete Collagenous colitis
Delete Lymphocytic colitis
Delete Microscopic colitis (collagenous or lymphocytic)

Any thoughts? I plan to attend the meeting in September, and they may put me in touch with the gastroenterology experts they consult with. Are there other recent peer-reviewed articles we should cite? Any references for ME? Would you suggest any specific edits to their MC description that are supported by peer-reviewed research? I'm preparing a draft response tonight...

YAY!! I'm so excited!!!!

[ant]

Dear Zizzle,

Wow! that is progress.

Problem #1: Is there a more professional sounding name for our group other than "The Potty People"?

How about what it written on the header...

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

Suitably serious, if a bit long?

or if Tex agrees we could make it less generic and include the url. Something like.....

"Perskyfarms.com Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues"

Of course, I much prefer "Potty People" it has that sense of humor that mark us out but......

Another thought would be "PP - you can get your life back"

Just brainstorming here,

Best, ant

[Zizzle]

Thanks Ant. Tex voted for "Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues" so I'll go with that. I'll give them the URL, so we'll see where they go from there...if they think I'm legit.

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

[JLH]

That's great news.

[Polly]

Z!!!!!!!!

Are you ready?......ta daaaaa, trumpet fanfare, applause, three cheers

Way to go! Your activism and hard work paid off. On behalf of all PP everywhere: THANKYOU!


Love,

Polly

[tex]

Yep, this has to be a very good thing for the future of understanding and reporting this disease.

Many thanks Zizzle!

Tex

[Zizzle]

Just to be clear, should I be advocating for the inclusion of ME? A quick look at PubMed doesn't make me hopeful that they'll accept it, particularly not as a subset of MC, but maybe a category under "other MC?" OR should it have its own category at the same level of MC? Most research, some as recent as this year, suggests we need to know more about mast cell activity in chronic diarrhea. The studies about ME seen to indicate that ME only happens in the absence of MC. Should I leave this one alone?

Here are a couple of references I can use:

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

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

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

[Zizzle]

Here is the preliminary agenda for the Sept 19 meeting. Note this is only an advisory meeting, and the final decision will be made by the end of the year. Anyone can call into the meeting. I'll probably call instead of making the trip to Baltimore.

http://www.cdc.gov/nchs/data/icd9/Tenta ... r_2012.pdf

And here is the current state of affairs for the "Colitis" section of the proposed ICD-10-CM. Something tells me doctors' offices will continue to code incorrectly when so much specificity is required. At least the new proposed numbering will organize MC (CC and LC) into one coherent category.

Colitis (acute) (catarrhal) (chronic) (noninfective) (hemorrhagic) (see also Enteritis) K52.9 - allergic K52.2
- amebic (acute) (see also Amebiasis) A06.0
- - nondysenteric A06.2
- anthrax A22.2
- bacillary —see Infection, Shigella
- balantidial A07.0
- Clostridium difficile A04.7
- coccidial A07.3
- collagenous K52.89
- cystica superficialis K52.89
- dietary counseling and surveillance (for) Z71.3
- dietetic K52.2
- drug-induced K52.1
- due to radiation K52.0
- eosinophilic K52.82
- food hypersensitivity K52.2
- giardial A07.1
- granulomatous —see Enteritis, regional, large intestine
- infectious —see Enteritis, infectious
- ischemic K55.9
- - acute (fulminant) (subacute) K55.0
ICD-10-CM INDEX TO DISEASES and INJURIES 2013 Page 219
- - chronic K55.1
- - due to mesenteric artery insufficiency K55.1
- - fulminant (acute) K55.0
- left sided K51.50
- - with
- - - complication K51.519
- - - - specified NEC K51.518
- - - abscess K51.514
- - - fistula K51.513
- - - obstruction K51.512
- - - rectal bleeding K51.511
- lymphocytic K52.89
- membranous
- - psychogenic F54
- microscopic (collagenous) (lymphocytic) K52.89
- mucous —see Syndrome, irritable, bowel
- - psychogenic F54
- noninfective K52.9
- - specified NEC K52.89
- polyposa —see Polyps, colon, inflammatory
- protozoal A07.9
- pseudomembranous A04.7
- pseudomucinous —see Syndrome, irritable, bowel
- regional —see Enteritis, regional, large intestine
- segmental —see Enteritis, regional, large intestine
- septic —see Enteritis, infectious
- spastic K58.9
- - with diarrhea K58.0
- - psychogenic F54
- staphylococcal A04.8
- - foodborne A05.0
- subacute ischemic K55.0
- thromboulcerative K55.0
- toxic NEC K52.1
- - due to Clostridium difficile A04.7
- transmural —see Enteritis, regional, large intestine
- trichomonal A07.8
- tuberculous (ulcerative) A18.32
- ulcerative (chronic) K51.90
- - with
- - - complication K51.919
- - - - abscess K51.914
- - - - fistula K51.913
- - - - obstruction K51.912
- - - - rectal bleeding K51.911
- - - - specified complication NEC K51.918
- - enterocolitis —see Enterocolitis, ulcerative
- - ileocolitis —see Ileocolitis, ulcerative
- - mucosal proctocolitis —see Proctocolitis, mucosal
- - proctitis —see Proctitis, ulcerative
- - pseudopolyposis —see Polyps, colon, inflammatory - - psychogenic F54
- - rectosigmoiditis —see Rectosigmoiditis, ulcerative
- - specified type NEC K51.80
- - - with
- - - - complication K51.819
- - - - - abscess K51.814
- - - - - fistula K51.813
- - - - - obstruction K51.812
- - - - - rectal bleeding K51.811
- - - - - specified complication NEC K51.818
ICD-10-CM INDEX TO DISEASES and INJURIES 2013 Page 220



[Lesley]

Well done!

I wrote to them as per your request, but the reply I got was generic and non committal. I didn't think to put it on here or ask any more about it. So, thank YOU for following all the way through.

"but is more common after age 70 years."
How many of us are over 70? I'm not. Not that far off, but not there yet.