I have Crohn’s. It doesn’t have me.

In the Name of #IBDAwareness

If you follow me on Instagram, you’ll know that I go on unabashedly about the good old #CrohnsLife, as in #AintTooProudToTalkAboutMyShiz or #BMintheAM or #KeepCalmAndGetAStoolSample. I’ll even post pictures like this one in the name of #IBDAwareness.

But the truth is that the levity with which I present these hashtags and photos detailing many of the Crohn’s-related challenges I face is new. Taking a humorous approach to Crohn’s is a lot like an ill-fitting garment, one I’m trying on for size and hoping soon to grow into fully.

I’m proud of the progress I’ve made in becoming an advocate for others suffering with Inflammatory Bowel Disease (IBD) and for finding a more balanced approach in addressing this chronic illness. But I wasn’t always comfortable speaking openly about having Crohn’s, and I certainly wasn’t at peace with the diagnosis. In fact, I’ve spent the better part of the 20+ years I’ve had Crohn’s ashamed of, horrified by, and wrathful at the nefarious ways in which this disease manifests.

November: IBD Awareness Month

November is IBD Awareness month in Canada. So I thought what better way to bolster IBD awareness than by sharing my front-line perspective, but first here are some appalling Canadian-based stats*:

• 1 in every 150 Canadians is living with Crohn’s or ulcerative colitis – a rate that ranks in the highest worldwide.
• Most alarming are the number of new cases of Crohn’s disease in Canadian children, which has almost doubled since 1995.
• IBD is as common as type 1 diabetes.
• IBD is 2X more common than MS or Parkinson’s.
• As of 2012, people living with Crohn’s Disease were at a 47% increased risk of death.

These figures give us a bleak context; too many people are suffering with an insidious disease for which there is no known cause or cure. In fact, a 2012 study published in Gastroenterology goes as far as to refer to IBD as a “global disease,” concluding that “the incidence and prevalence of IBD are increasing with time and in different regions around the world, indicating its emergence as a global disease.”

Epidemic. Pandemic. And we need to make it stop.

Losing the Kid Gloves

My hope with this post is to provide a stronger framework for the alarming stats above by losing the kid gloves and conveying what life can be like, has been like, for me battling it out from the trenches of IBD.

I recently came across another writer whose words – because of their veracity – felt like a blow to my solar plexus. My response to reading Nancy Mairs’ essay “On Being a Cripple” was seriously visceral. Mairs, who suffers from multiple sclerosis (similar to Crohn’s in that it’s autoimmune and chronic), managed to convey, in a passage of impressive brevity but of astounding articulacy, what I had always sensed: “What I hate is not me but a disease. I am not a disease. And a disease is not . . . going to determine who I am.”

I gotta tell you, though. The disease gave me a run for my money. The disease is a ruthless mofo, and although like Mairs, I now refuse to let Crohn’s determine who I am, Crohn’s sure as hell has brought me to my knees, begging for a modicum of mercy in the fight for health and, well, in the fight for me.

Getting Lost in the Chaos of Disease

Early in my battle against Crohn’s, I began to lose myself amidst the weekly blood tests, the frequent diagnostic imaging, the humiliating digital rectal exams, the invasive scopes, the numerous infusions, and the heartless spectator-sport of doctors doing their rounds.

Confronting the symptoms of IBD brought further, literal loss of mobility and control. Red, tender, and swollen joints (Crohn’s doesn’t just attack the digestive tract) made lying to sitting and sitting to standing and eventually standing to walking excruciating. An inflamed and bloody colon made accidents an almost daily occurrence. I didn’t resort to diapers, but I did wash a lot of undergarments. And I didn’t go out much.

My young-adult life had become a sick and twisted mess of what it was meant to be. Instead of embracing the new beginnings and embarking on the adventures that one’s late teens and early 20s bring, I was laying (in) waste, alone and scared.

I didn’t know this person. I was losing me to the brute force of the disease. At best, I felt like one of Marty McFly’s siblings disappearing from the family photo (except that getting caught “in a paradox that could ultimately unravel space-time continuum” would have been way cooler). At worst, I felt like a vampire, monstrous and without a reflection. Nothing substantial was left of me.

“I think, therefore I am” became “I have Crohn’s, therefore I’m not.” With each flare, I got lost in the chaos of inflammation and pain. And the disease started to negate my sense of self.

But I didn’t need to add to the physical suffering that Crohn’s causes by letting the psychological anguish get an upper hand because, simply put, I was and am not the disease.

Learn From My Mistakes

I needed a couple decade’s worth of fighting and perspective to understand this simple truth. But you don’t! Learn from my mistakes. I hope if you likewise suffer with a chronic illness that you won’t waste a moment on the shame and self-loathing. Let me have done it for you.

Of course, you’ll need to work through the anger. At times you’ll want to scream from a place dark and primal. And you will cry. But never, ever let the disease rob you of you. Hold on tight to who you are, which is not the disease. You are so much more than the symptoms.

After all these years my mantra finally became and remains: I have Crohn’s. It doesn’t have me.

This is my manifesto of sorts. I want to let you in on the trials and triumphs of living with Crohn’s – the good, the bad, and . . . the stinky.

My mantra is firm. My intonation is clear – I have Crohn’s. It doesn’t have me.

*Stats taken from Crohn’s and Colitis Canada.

Feature photo credit Jenn Clara Photography.