Tag Archives: Crohn’s

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

 

 

 

 

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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

Confessions of a Pooter-Pack

It was about 5-1/2 years ago when I first recommended canonization of my husband, John, to the Vatican.  Even though I am a very lapsed Catholic, I’m sure they’ll go along with it.  Because he really does deserve it.  Good spouses of many people with chronic diseases deserve special recognition, but I’m pretty sure only John deserves sainthood.  Because all the good saints have been tortured, haven’t they?  And John absolutely fits that bill.

Saint Sebastian by Il Sodoma, c. 1525

Saint Sebastian by Il Sodoma, c. 1525
(Image from Wikipedia)
I couldn’t find any saints who were suffocated, so John has a good shot

Let me mention that I’ve been reluctant to write about this subject.  But after multiple requests following my last post about good hygiene and the New Jersey Turnpike, I figured I’d just get it over with and get on with my life.  

I knew from an early age that there was one moniker I never wanted to have.  I never wanted to be a “Pooter-Pack.”

It’s a bad thing, being a Pooter-Pack.  Nobody likes them or wants them around.  And nobody wants to be called a pooter-pack.

In fact, in possibly the only instance where my brother was caught doing something wrong, Fred’s mouth was washed out with soap for calling our paperboy a “Pooter-Pack.”

What, you might ask is a “Pooter-Pack?”

It’s a pack of pooters, DUH!  You know – farts.  Butt burps.  Cutting the cheese.  “Fluff” as my childhood best friend Liz’s family called them for no logical reason.

I did not want to be a pooter-pack.  No-sirree Bob.  And for the longest time, I wasn’t.  Those were golden years that I did not fully appreciate.

To set the record straight, I did not become a pooter-pack that day when all the kids in my 6th grade English class thought I did.  I was viciously maligned.  Tagged.  Ridiculed.  It was a hot spring day and my young, innocent, bare leg stuck to my plastic seat.  When I moved, I made a nasty fart-like sound with my leg.

Let’s be clear about this:  I did not fart.  I would have died first.

But Tommy O, the main bully in my life, led Kevin E and John L in a sing-song around me:

Elyse Farted!  Elyse Farted! 

She did she did she did!

I wanted to disappear.  Disolve.  Die.  It was so unfair.  I didn’t!  Not even so much as an SBD!    And it had no smell at all because I hadn’t farted.  It was a leg, umm, fart.  They’re different.  Somewhat pleasant, even.

I tried to defend myself, but the whole class heard the noise and believed the boys, not me.  I hate them all still.

Fast forward past many fart-free years.

In the early 1980s, I had a severe case of colitis-that-was-really-Crohn’s disease.  That was when I really started tooting my own horn.  Quietly, though, thankfully.  SBDs.

One of the treatments for many kinds of bowel disease is a drug called prednisone.  One of prednisone’s most notable symptoms is flatulence.  Prednisone does not give a girl delicate lady-like whiffs of something vaguely unpleasant that might induce a brief nose wrinkle.

Nope.  Waves of heavy, inescapable stink accompany a person taking prednisone.  Like Charlie Brown’s friend, Pig Pen, a smelly cloud hung around me wherever I went.

(Google image.  Done by Charles Shultz, of course.  Who, I am quite sure never had gas.)

(Google image. Done by Charles Shultz, of course. Who, I am quite sure never had gas.)

In the Metro.  On a bus.  In an elevator.  In my office.  I was engulfed in my nasty, stinky cloud.

In spite of the evidence of everybody’s senses, I never admitted I had a problem.  That it was me polluting the air.  Nope.  I didn’t say a word to anyone.  I just couldn’t bear another bit of humiliation.  (But frankly, unless there were a whole lot of lucky people around me suffering from anosmia, loss of smell, people were polite or stupid.)

I’m going with polite.  Because my friends and co-workers were truly terrific.  And they knew just how embarrassing life was for me.  You see, when you have bowel disease, you are constantly in humiliating, compromising positions.  I’ve written about that many times, including here.

I didn’t mention that I’d become a pooter-pack to my parents, who were, luckily for them, safely in another state.  I couldn’t mention it to my sisters, including Beth, the nurse, who would have known the reason (I didn’t)  or Judy, who would have laughed herself silly and taken me along with her.

I also didn’t mention it to my roommate, Keily.  Keily lived with me.  She was exposed to the ill effects of the prednisone but never once broached the subject (she is the biggest-hearted person in the world, my friend Keily is).

I’m pretty sure that my dog, Goliath, loved me more because of the smell.  Dogs are gross.

The only person who ever mentioned flatulence to me was my gastroenterologist, Dr. C., the guy who gave me the damn fart pills.

“Are you having any gas?” he’d ask.  It was always the last in the usual lineup of embarrassing questions.

I would look him straight in the eye and say:

“Gas?  Me?  No,” I lied, every single time.

Dr. C would tilt his head like Goliath and look straight at me as we sat together in my stink cloud.  Every time he’d wait for my answer to change.

It never did.

As far as my medical records from that time are concerned, I have never ummm, fluffed.  Dr. C surely wrote me up in a medical journal somewhere.  Or perhaps he went to a doctor to have his own sense of smell assessed.

Anyway, I had my surgery and for years I lived up to what I told Dr. C.  I did not pooter.  Truthfully this time.

I’m not sure that that was what first attracted John to me, but I’m sure the fact that I did not have a stink cloud around me didn’t hurt.  We’d been married about 20 years when my Crohn’s symptoms, ummm, re-erupted in about 2006.

I felt fine, actually.  But something peculiar happened whenever I would go to bed.  It started out slowly, gently, and then progressed to putrid:  Whenever I lay down, my bottom end erupted.  The most noxious substance passed out of my body and into the air in the bedroom.

It never happened if I was upright.  Ever.  Only John had to deal with it.

“There’s actually some comfort in it,” John said towards the beginning.   “Not every husband can be sure that their wife won’t lay with another man.”

I pursed my lips and glared at him.

Still, I couldn’t imagine what could possibly be happening.  But then I started to worry.  You see, when I had my surgery in 1982, which was for documented colitis, the doctors disagreed after the fact about what I had. If it came back within 10 years, it was Crohn’s; if it didn’t, it was colitis.  It turned out that it was Crohn’s that came back over 20 years later.  And it came back with a bang.

The first person I told my gaseous problem to was my late sister, Beth.  Beth was a nurse, and she was incredibly smart.  Amazing, in fact.  She could diagnose any malady in a nano-second.  So I told her about my problem, and that it was getting worse.

“I really don’t know what to do,” I told her.

“Gee, Lease,” she said sympathetically, “It sounds like you could clear Walmart.”

“Thanks, Beth.  That helps.”

“Try some GasX,” she recommended a bit more helpfully.

And I did.  GasX works.  It really does.  It even works on weird gas problems like mine.  Sort of.

At that time, GasX was available in two forms.  One that claimed it kept gas away for 4 hours, and the other said it kept it away for 6 hours.  Never was a drug label more accurately written.  Because exactly at 4 hours plus one second, all that stored up flatulence would burst out into my bedroom, like a neutron bomb.  In the middle of the night, and into the place where my poor husband tried to sleep with me.

He never complained.  Occasionally, he would moan “Oh, Lease,” but I’m sure that was just his way of searching for oxygen.

My boss, a physician, noticed me researching flatulence one day, and asked me why.  I confessed my problem to her.

She stood in my office and laughed until her belly hurt.

It’s never good when a doctor can’t stop laughing after you’ve described your symptoms.  Unfortunately, she couldn’t help me either, and she’s brilliant.  She’d never heard of reclining flatulence, either.  Nor had Google, my bible.

Unlike my previous time as a pooter-pack, this time there was no cloud of stink.  Instead, this time the stink formed a curtain, a wall around the bed.  It was truly horrible laying there in the poisonous air.  But I would, being the good wife I am, try to rid myself of the gas by going to the bathroom.

When I came back?  Getting back was like walking through a brick wall.  There was literally a physical wall of stinky bricks.

Which brings me to the reason my husband should be canonized.  Because for 2 years, and until the third of three different doctors poked and prodded and tested, did the third one figure out what was wrong with me (an internal abscess that required surgery), my husband did not complain that I was not exactly a dream wife.

And never once did he call me a pooter-pack.

*   *   *

In a last-ditch effort to save a little bit of my nearly exhausted pride, I will tell you that since that surgery, I have not been a pooter-pack.  Honest.  Would I lie?

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