Category Archives: Good Works

In May 2012, about a year after I started blogging, I came out of the closet here on FiftyFourAndAHalf.  Out of the water closet that is.  I fessed up.

I posted this:

My life is shitty.

No, no, no.  I can’t say that, they’ll think I’m suicidal.

My life is in the toilet.

Ditto.

Saturday, May 19^th is World IBD Day.  World Irritable Bowel Disease Day.

That’s it!

Recently I learned about this, umm, holiday.  It is a very personal one for me.  Way more personal than I want to admit.  But of course it’s not my fault.   I blame my sister, Judy.

You see, some time in the late sixties Judy pasted a picture on the front of the medicine cabinet above the toilet in our one bathroom.

Little did I know at whatever tender age I was that that picture would illustrate my life.  Because in 1972, not long after it went up, I found out that I had ulcerative colitis.  An inflammatory bowel disease.  The bloody flux.  I was in and out of the bathroom and the hospital for much of my teens and early 20s.  What a blast!

Long story short, it ended up that I didn’t have colitis!  But we only found that out when a bunch of men (led by Dr. Herbert Hoover) came at me with knives, removed my large intestine and reorganized my plumbing.  That was when they found out that I really had Crohn’s Disease.

Crohn’s Disease, is, well, worse.  Partly because I can’t for the life of me spell it.  But also because it means I still spend way too much time in the bathroom (although I am very well read).  Oh, and it can affect the entire rest of your body.  Trust me when I say it’s nasty, and that there is no cure.  I would be delighted if that were to change in my lifetime.

*****

Fast forward to now, today, December 7, 2016.  Today ends Crohn’s and Colitis Awareness Week.  There will be a Thunderclap of posts, and tweets, blogs, and Facebook postings to call attention to Crohn’s and Colitis — to Irritable Bowel Disease — diseases that are often “invisible.” Because unless a person goes onto the Internet and proclaims that their life is in the toilet, well, nobody knows.  Unless perhaps if they are in the next stall.

In all seriousness, 1.6 million people in the U.S. alone suffer from Crohn’s or colitis.  These diagnoses are life changing — they cramp not just your gut, but your life.  Your life really does revolve around the toilet.

So I have a favor to ask of you guys.

You’ve all been wonderful, supportive friends, who have laughed with me about my poop problems.  I thank you from the bottom of my heart.  Or maybe just from my bottom.

But here is the favor.

I have been working with the Crohn’s and Colitis Foundation of America to get member of the House of Representatives to join the Congressional Crohn’s and Colitis Caucus.  These Representatives will, hopefully, help direct funding into research towards a cure.  To, in fact, get me (and 1,599,999 others) off the pot.

Please send an email to your Congressman/woman (you can find their information here:  http://www.house.gov/representatives/) and ask them to join the Caucus.  In fact, just cut and paste this into the email/form:

PLEASE JOIN THE CONGRESSIONAL CROHN’S & COLITIS CAUCUS!

Led by Representatives Ander Crenshaw (R-FL-4) and Nita Lowey (D-NY-17), the Congressional Crohn’s & Colitis Caucus is a bipartisan group of Members of Congress dedicated to educating their colleagues and the American public on Crohn’s disease and ulcerative colitis. The Caucus works together to raise awareness, support IBD medical research, and protect patient access to care. The Caucus also works to assert the patient perspective in regulatory decision-making, including the development of a biosimilar regulatory pathway. To join or to learn more information, please contact Matthew Moore in Rep. Crenshaw’s office (matthew.moore@mail.house.gov; 202-225-2501), or Dana Miller in Rep. Lowey’s office (dana.miller@mail.house.gov; 202-225-6506).

Thanks.  You guys are the best.