Every time I ate, I either vomited or immediately had to use the bathroom. That’s pretty much how it was 20 years ago right before I was diagnosed with Crohn’s disease, a digestive disorder that affects about 1.4 million Americans.
And the pains that pierced my gut were like nothing I’d ever felt; each time it hit me, it was nearly enough to double me over. It literally felt like a stab wound, and it happened every hour some days.
But it took numerous doctor and hospital visits and nearly three months to be diagnosed with Crohn’s during an exploratory surgery. During the operation, my doctors discovered a huge abscess had blocked my colon and caused it to rupture, spilling infection and feces into my body cavity, ultimately causing me to lose nearly 60 pounds and about 10 feet of intestines and colon.
About nine months after the ordeal began, after spending time saddled with a colostomy, facing financial ruin (my insurance company was not kind), and having undergone four surgeries, life finally returned to “normal.”
Normal in Crohn’s terms, however, meant I used the bathroom as many as 15 or 20 times per day at first, took a lot of expensive medication, and battled recurring pain and bleeding. Unfortunately, I faced a life in which, quite literally, I would be sick every day.
I’m telling this story for a couple reasons: For one, I’m a lot better today, and I now want to help people who suffer the way I have. As such, I’ll be participating this Saturday, June 5, in the Take Steps for Crohn’s & Colitis Walk at Waterfront Park to help raise money for research to find a cure (thanks to my generous friends and family, I have nearly tripled my original goal). This is year three for this fundraiser — the first time for Louisville — and I encourage everyone who reads this to make a donation at www.ccfa.org, the official site of the Crohn’s & Colitis Foundation of America. Last year, the walk raised $6 million; the goal this year is to double that.
By writing this, I also want to pay tribute to everyone who suffers from inflammatory bowel disease and who, like me, has to live with the pain, the mental fatigue, the embarrassment and the emotional toll. It’s for all the poor souls who panic if there isn’t a bathroom nearby, and for those who face the embarrassment of actually having to use those public facilities — trust me, it’s no fun to be the one who always funks up the bathroom.
As Crohn’s patients like to say, some days I literally hate my guts. But sufferers of IBD soon learn to have a sense of humor about their situation. When I heard about the Crohn’s & Colitis Walk, with hundreds of people like me all converging on the Waterfront, I thought, “Boy, I hope they have a lot of Port-o-Potties on reserve.”
One of my favorite Crohn’s stories involves a concert I attended on the waterfront circa 1991, not long after I was back on my feet. I had eaten dinner at a chain Mexican restaurant (I know, I know), and about two songs into the band’s set, my burrito found its way to the exit. In fact, it did so with a surprising sense of urgency (a common occurrence with both Crohn’s AND Mexican cuisine). Panic set in as I rushed away from the concert to save my dignity — and my boxers.
I found a row of 10 or 12 portable toilets about 100 feet away, and I dived into an empty one. I barely made it. Relieved, I then looked around, and … no paper.
There was nothing I could do; I needed paper. Desperately. Luckily, I had a blue flyer folded up in my back pocket — it wasn’t terribly soft or absorbent, but it was better than nothing. And yet it wasn’t enough. So I opened my wallet: Some photos, two plastic cards, a couple of ATM receipts, a couple of 20s, and four ones. Four ones.
Crohn’s disease cost me $4 the hard way that night. And those are four more memorable reasons why I’m taking steps to give something back 20 years later. So, help out. Make a donation to the walk at www.ccfa.org.
Otherwise, we’ll all walk directly to your house and ask to use your bathroom.