I have Crohn’s. It doesn’t have me.

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.IMG_4594

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.

 

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This article was written by

Martine Partridge, founder of Eat Heal Thrive, is an eater of whole, nourishing, real food. She is also a combatter of Crohn's Disease. Martine wholeheartedly believes that food is the fulcrum for good health and has had wonderful results in managing autoimmunity by eating to heal, and healing to thrive.

There are 21 comments for this article
  1. Rachel at 3:46 am

    Thank you so much for sharing! ?? Love your mantra, I’ll have to adjust mine slightly…I have colitis. Colitis doesn’t have me. ?
    You couldn’t have been more true in your words. Everyday we’re tested physically, emotionally and psychologically with this disease, and it’s ruthless! But we can’t let it best us.

    • Martine Partridge Author at 9:16 pm

      We could also adjust a collective mantra: “We have IBD. IBD doesn’t have us.” 😉 This disease can be a mean one, but I agree with you wholeheartedly — it won’t get the better of us. <3 Keep taking good care.

  2. Andrea at 6:45 pm

    This definitely is an encouraging and heartfelt post, Martine. Proud of you for all you’ve overcome and all you are continuing to do! Truly inspiring.

  3. Jess at 11:02 pm

    It’s nice to observe strength in fellow IBD’rs. Thank you for sharing your struggle so as to validate the rest of us and remind us we are not alone…despite that overwhelming feeling at times.

  4. Marcie at 5:38 pm

    Such a great post! I loved reading this! I face a battle with autoimmune disease and it stinks. I have found myself at times letting it define me. I will hold tight to your word Martine! Thanks! Hope you are doing well!

    • Martine Partridge Author at 8:00 pm

      Hi, Marcie. Having a chronic illness can be overwhelming and consuming, so it’s no surprise we struggle in letting it become a defining factor in how we identify. But we are so much better and bigger than the disease and its symptoms. 🙂 So glad you enjoyed this post. Stay well!

  5. Pingback: IBD Awareness Week: Celebrating 20 Years of Living with Crohn's Disease - Gutsy By Nature
  6. Mimi at 10:52 pm

    I loved reading your article. It captures the feeling one gets in difficult times dealing with Crohns. I’m dealing with painful anal fissures and surgeries right now all due to Crohns. It feels very lonely when going through the tough moments, but it’s nice to know there are others who know what I’m going through. Keep on posting because your words make a difference!

  7. Basmah at 1:09 am

    Thank you for sharing your story. I am battling Crohn’s Disease – 1st week of April will be 13 years. I am overcoming a recent flare, and there are days where I want to throw in the towel. Then I remember everyone who has been supporting me and all of the things I can look forward to. We just have to keep on fighting!

  8. Sunny at 8:12 pm

    Happy to have found you and your blog! I’m interested in that statistic about Canadians and degree of IBD ….astounding statistics! I was born in Canada 77 years ago and have wondered about genetic links for my IBD….last diagnosis was Microscopic Colitis. I’ve had Cdiff twice and also have Celiac disease. AIP hasn’t worked for me …..I’ve struggled with set backs and flares for 5 years now. I’m discouraged to say the least and so this post did much to encourage me. Thanx! Is there a way to subscribe to your blog by email?

    • Martine Partridge Author at 9:24 pm

      Hi, Sunny. Sorry to hear about your struggles. I’m hopeful that one day soon doctors and research will start to investigate more closely the link between so-called IBD (an autoimmune disease) and bacteria. I think the interest in the gut as a the microbiome is an encouraging new frontier of medicine. Based on how I’ve responded (and not responded) to certain treatments, I feel strongly that there is an infectious component. Hang in there! As hard as it is some days, we can never give up — I’m learning that slowly but surely. 😉 I don’t currently have anything set up for readers to subscribe to my blog, but I will look into it. In the meantime, thanks for stopping by and good to “meet” you. 🙂

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