An Open Letter to Crohn’s Disease for World IBD Day
May 18, 2018
By Lindsay Barnes, Assistant Account Executive
Dear Crohn’s Disease,
I wish I could tell you to go away, to stop causing mayhem to my body. Do you think I enjoy this constant in and out, up and down? How much can one bum take? You forged your way into my gut without my consent. This World IBD Day, I’m here to tell you that no matter what, I’m in control of my life, not you.
When I was diagnosed with Crohn’s disease in August of 2012 – a major category of inflammatory bowel diseases (IBD) – you didn’t define who I was as a person; you just changed the way I lived my life and what I considered to be normal. Going to the bathroom 15 times a day was my new normal. I wasn’t prepared for the long road that was ahead of us – the numerous tests, medications, surgeries, and pain that would follow my diagnosis.
In fact, up until I was diagnosed with Crohn’s I had no idea what it was, or that more than five million people worldwide live with Crohn’s disease or ulcerative colitis. I remember coming out of my first colonoscopy wondering what my life would be like. What would happen if I had an IBD? Would I have this disease for life? And was it true what my doctor had said about there being no known cure and that nothing I could do would help me to heal? I was told there was nothing I could do but wait to see how my disease progressed. Now you really started to rub off on me; I had quite the potty mouth.
The funny thing about IBD (other than poop jokes) is that no two patients are the same. We don’t all have the same symptoms, the same reactions to certain foods, see the same results from medication or have the same body type. We’re all scurrying through a maze of trial and error, trying to figure out what works best for our bodies, while also trying to manage the emotional journey that comes with your poop life.
One thing I know to be true about IBD is that we all experience similar emotional setbacks. Trying to make someone understand that when I say I need to use the bathroom, means I need to NOW. Attempting to balance two types of relationships – the one with my better half and the one with my bottom half. The awkwardness I feel when I’m having a good time and suddenly you make me run to the bathroom. And one of the worst feelings of all is feeling so incredibly isolated due to my condition. Who wants to be with someone who spends more time in the bathroom than actually with their company?
It’s taken me almost six years to be able to talk freely about you, and what I do know now is that having a voice is better than living in silence. All of these thoughts, and these feelings of isolation, frustration, and even anger are all okay to feel. There is a way for my body to heal – speaking out about my journey with you in hopes of breaking the barriers for others who feel like they can’t speak their truth. Living with Crohn’s disease doesn’t have to be as crappy as it sometimes feels. By speaking out, my fellow Crohnies and I have the ability to change the narrative. You may not know this, but we see that this life is a beautiful place to be in when our heads aren’t burrowed between our knees.
At the end of the day, I want to raise as much awareness as possible for everyone who suffers from these ‘invisible’ illnesses.
Lindsay Barnes, Crohnie
P.S. To my fellow Crohnies: Remember, there is no IBD path; it is important to carve out your own story, and find out what works for you. Sharing your personal journey or experiences with IBD can help someone else feel less alone, less ashamed, and more empowered to be a voice of change.
I hope others find the courage and strength to stand up to IBD and scream out – YOU DON’T OWN ME!
Happy World IBD Day – from one bum to the next.