December 7, 2016 · 0:00
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Only I Would Call It “Poop Week”

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 19th 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.

be-idvisible

 

 

 

 

20 Comments

Filed under ; Don't Make Me Feel Perky Tonigh, A Little Restraint, Perhaps, Adult Traumas, Advice from an Expert Patient, Being an asshole, Childhood Traumas, Chronic Disease, Cool people, Crohn's Disease, Curses!, Friends, Good Deed Doers, Good Works, Health, House of Representatives, Humor, Poop, Poop transplants, Satisfaction, Saving the World, Science, Taking Care of Each Other

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20 responses to “Only I Would Call It “Poop Week””

  1. silkpurseproductions
    December 27, 2016 at 0:00

    I have three people in my life with Crohn’s Disease. My baby sister (who isn’t a baby any more), my Nephew and you. I am blessed to have the three of you in my life. Not just for the education on all things poop but because of the people that you are. I would write your letter if I thought it would do any good, but I don’t have a congressman/woman/person to send it to. I know the American politicians don’t take much stock in what we Canadians think (otherwise you wouldn’t be about to crown Trump as president). So know that in my heart I am rooting for you and your poopy situation.

    Liked by 1 person

    Reply
    • Elyse
      December 27, 2016 at 0:00

      Aww, thanks, Michelle. sorry that there are family members with it. the more I read about it the more I realize that every patient is very different. Like some have diarrhea and some have chronic constipation (how can the same disease create such different symptoms????). Anyway, I hope they aren’t terribly active Crohn’s patients… but you confirm my theory of genetics. Docs are now saying maybe — they used to say it wasn’t genetic which is ridiculous when it runs in families! Ahhhhhhh, poop.

      Liked by 1 person

      Reply
  2. pouringmyartout
    December 9, 2016 at 0:00

    I call every week poop week… but I am very immature…

    Liked by 1 person

    Reply
  3. nonnie9999
    December 9, 2016 at 0:00

    I just posted it to Debbie Wasserman Schultz’s Facebook page. That will have a wider audience than just one email to her office.

    I’ve always said that, if I get a bad disease, I hope it is something that a member of Congress already has, because that’s the only time any of them ever call for research.

    P.S, Poop jokes are the shit!!

    Liked by 1 person

    Reply
  4. speaker7
    December 8, 2016 at 0:00

    I was all stopped up, but now I am MOVED by your post. Get it? Get it? Yes, I am a 5-year-old.

    Liked by 1 person

    Reply
  5. Go Jules Go
    December 8, 2016 at 0:00

    This is awesome to see so many people finally giving a crap about this.

    Liked by 2 people

    Reply
  6. cindy knoke
    December 7, 2016 at 0:00

    You have my support and my empathy.

    Liked by 2 people

    Reply
  7. Kate Crimmins
    December 7, 2016 at 0:00

    This area needs more research and work to understand it. I’m with you on this.

    Liked by 2 people

    Reply
  8. Tippy Gnu
    December 7, 2016 at 0:00

    I will put a paper and pen by the can, and write a letter during my idle moments.

    Liked by 2 people

    Reply
  10. pensitivity101
    December 7, 2016 at 0:00

    Good luck. Here’s hoping for a positive outcome.

    Liked by 2 people

    Reply

Play nice, please.