Some of you may know that I have been dealing with Irritable Bowel Disease for many years. And for those of you don’t, lucky you! What could be cheerier than a discussion of Ulcerative Colitis or Crohn’s Disease? But I’ve decided it’s time to come out of the closet, or the bathroom, as the case may be, and discuss something that recently occurred. Even though Katie Couric brought the Colonoscopy out of the closet and Mehmet Oz describes stool shapes on Oprah, for about a million people worldwide, these diseases and the tests for them (colonoscopy, and it’s slightly less invasive evil twin, sigmoidoscopy), remain a shameful part of everyday life. These are the last bastion of taboo illnesses, still avoided in polite conversation and it’s no secret why. How’s this for an icebreaker: Hi, I’m Debra. I like Pina Coladas, walks on the beach and retention enemas.”

At last year’s CCFA (Crohn’s and Colitis Foundation) dinner, a lavish affair sponsored by the Modell family, who’s son succumbed to years of ravages from Crohn’s, our friends’ twenty-four year old son was a featured speaker. He stunned the audience by peppering his speech with blunt references to the symptoms and humiliations of the disease. In mixed, black tie, company, he used expressions such as “bloody stool” and “anal fistulas”; not exactly appetizing dinner conversation, but the effect was profound. This group of 1000, which included top doctors and gastrointestinal surgeons, guests with ill family members, and still others suffering themselves, a group that should be least likely to be embarrassed by the terms of bowel disease, squirmed.

So imagine how that poor teenage girl just entering high school or a new bride in the first year of marriage, or a young mother with school-age kids, feels. How do you go on a date, to the prom, to dinner, on vacation, to a PTO meeting, on a car trip or to the office, when you have little or no warning before you need a toilet, any toilet? And the unspoken biggy: how to be intimate, feel sexual, desired and desirous in the face of real physical issues, side effects from meds, and the humiliation of having a ‘disgusting’ disease? I’ll tell you this, I’ve been navigating all of it for almost twenty years and I’ve decided that after the meds and the right doctors and the alternative therapies there is one, single, unifying and helpful tool; a sense of humor. Yes, I advocate for myself, constantly check out the research, occasionally participate in a clinical trial and even make my own, probiotic-on-steroids yogurt. But if I didn’t step back and laugh once in awhile, or more, I’d be lost. Unknowingly and most certainly unintentionally, CCFA recently gave me the chance to do just that.

CCFA is an amazing organization with a plethora of resources, information, and support groups for every age and stage of disease but occasionally they misstep. Last year they sent out ‘emergency cards’ to members; bright purple, and with large white letters, these cards announce, ‘I CAN’T WAIT!’ Flip the card for further details and you learn: “The cardholder suffers from a chronic gastrointestinal illness and MUST be allowed to use an available restroom.” Lovely. And in a pinch, even necessary. But if there were any doubt about the shame of this disease just imagine having to present that card. Dignity’s last stop. Or, (she said sheepishly) here’s my note:
I can’t wait!

It’s no wonder no one wants to talk about Crohns’ and Colitis. We have no pink ribbons, no cute tee shirts and very few Rallies for a Cure. Although recently, we did get a slogan: Got Guts! We also have disturbing seminars (Your Colon: Diarrhea has many colors.) and articles (Rectal Mucus: friend or foe?). Yes, I jest. But see, even you are starting to feel better about all this bathroom talk and you don’t even have the disease! Recently I was on the phone with my sister-in-law, who has her fair share of bowel issues, and we were having one of our frequent discussions about movements, cramps, and gas. “Twenty years ago” she said, “when we were running around at the clubs, who knew that ‘doody’ would turn out to be so important?”
Like I said, ya gotta laugh. Now that can’t wait.