Sharing 10 things about Crohn’s Disease and me, from symptoms and diagnosis to treatment, diet, and living a healthy, normal lifestyle

Life with Crohn’s

I’m working on telling my Crohn’s story. Like it says right there on my about page, I’d like to focus more on my experiences with chronic illness to help myself, those around me, and anyone who needs to know they are not alone. Canada has one of the highest rates of Crohn’s Disease in the world. So I thought it was time to share some facts about this invisible chronic illness. Follow along as I expand on my journey. To start, here are ten things about my experience with Crohn’s Disease. Which of course are unique to me. Crohn’s affects everyone differently.

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People with Crohn’s disease can live a normal life. I’m sharing 10 facts about crohn’s and me, from symptoms and diagnosis to treatment, diet, and living a healthy, normal lifestyle. #crohn’sdisease #crohns #crohnswarrior #ibd #invisibleillness #ibd… — People with Crohn’s disease can live a normal life. I’m sharing 10 facts about crohn’s and me, from symptoms and diagnosis to treatment, diet, and living a healthy, normal lifestyle. #crohn’sdisease #crohns #crohnswarrior #ibd #invisibleillness #ibdawareness

10 things to know about me and my Crohn’s Disease

I was first diagnosed with Crohn’s in 1997. The doctor actually said she wasn’t 100% sure, but we’d know if it came back. Spoiler alert: it did. Early signs and symptoms of Crohn’s include severe abdominal pain, nausea, fatigue, internal bleeding, passing blood, frequent, urgent trips to the bathroom, weight loss, and malnutrition. 🤢
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No colon, still rollin’! 🚴🏻‍♀️ Okay I have five centimetres of my large colon left. I don’t miss the rest of it. I had a subtotal colectomy in 2002. I lived with an ileostomy for eight months, and had an anastomosis in 2003 to reconnect my small bowel to what was left of the large bowel. Did you know your colon is on average five freakin’ FEET long? All that, just missing from inside my body!! I have the 10-inch scar to prove it.
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My Crohn’s Disease diagnosis was actually first a special blend of Crohn’s-Colitis. Though I’ve since had my colon removed, I technically can’t have Colitis, which is inflammation of the colon. 🙅🏻 Crohn’s Disease can affect any part of your GI tract from your gums to your bum. 😃🍑 Crohn’s Disease and Ulcerative Colitis are chronic autoimmune diseases. They cause the body to attack healthy tissue, leading to the inflammation of all or part of the gastrointestinal tract.
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I feel like I can say I am lucky. I’ve only been admitted to the hospital due to Crohn’s Disease eight times that I can recall. 🏥 Yes, that means I’m one of the lucky ones. Two flare-ups, two surgeries, four bowel obstructions. I’ve been to the emergency department many other times, plus three other hospital admissions. Once for preterm labour, and twice for childbirth (two c-sections!) That’s 11 all-expenses paid staycations chez l'Hôpital.
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Once upon a time I’d tried all the conventional Crohn’s Disease treatments: diet, vitamins, anti-inflammatories, steroids, immune modifiers, surgeries. At last resort I tried a very new (at the time) treatment. It’s a biologic drug called Remicade that suppresses the immune system. My overactive immune system that attacks my healthy tissue. It does leave me immunocompromised. 😷 That was 11 years ago and it’s been mostly working for me since, with a few adjustments along the way. There’s still no cause or cure (genetics, environmental factors, the immune system and changes in the gut microbiome all play a role in Crohn’s Disease) but science has come a long way. There are now other new medications to turn to should I need to try them. I hope it never comes to that! 🤞🏻 Read about my infusion experience during the coronavirus pandemic.
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My Crohn’s Disease treatment, an infusion at every six weeks, costs over $30,000 a year. 💰💰
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Thanks to said treatment, my symptoms are at bay most of the time. People with Crohn’s Disease can live a healthy, normal life. 👋🏼 Hello, I’m one of them! I have two kids, a fulfilling career, work-life balance. I travel, I exercise, I socialize. Crohn’s affects people differently from mild (been there) to severe (also been there) symptoms. I’m in remission, but Crohn’s is an unpredictable and chronic illness that can rear it’s head at anytime - and has. Flare-ups can still happen. Stress certainly contributes to exacerbating Crohn’s Disease (or does Crohn’s exacerbate stress, hmmm?) but is not the cause. When I’m in remission I can do anything you can do - maybe better. My threshold for pain is high and it takes a lot to warrant a sick day. I’m used to pushing through when not feeling 100%. Read about how I manage a balanced healthy lifestyle with Crohn’s Disease where moderation is key
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In the fourth year of Journalism School my honours project for my narrative nonfiction workshop was the story of part of my Crohn’s journey. 📝 I got an A. I have plans to expand on that project. Stay tuned!
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The diet for Crohn’s Disease is different for everyone. I do not eat nuts, seeds, or many raw, rough foods like raw vegetables, fruit peels, anything that’s too hard to digest. 🍎🥜🌽 I miss delicious buttery popcorn the most. I used to sneak and cheat in the past (at the movies) but I will never again because the potential consequences are not worth it. While it’s insane to risk being hospitalized with a bowel obstruction any day, it’s even more insane to risk being hospitalized with a bowel obstruction when you have two young kids.
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There was a time I was working tirelessly conducting radio and TV interviews, sitting on panels organized by the Crohn’s and Colitis Foundation of Canada (in Halifax, Montreal, and Toronto) and speaking on behalf of young people with Crohn’s disease. 📣 I put that on the back-burner when I started a family but I suspect it’s something I’ll get into again.

from the 2012 Impact of ibd in canada Report from the scientific community, a comprehensive, data-laden resource about the impact Crohn’s disease and ulcerative colitis have across Canada. #crohnsdisease #crohns #ibd

In 2009 I took part in a media campaign to help educate Canadians about the quality of life of someone living with Crohn’s disease. Along with an article about me (not by me!) in the newspaper, and some on-air live interviews, I filmed a pre-packaged news segment for TV. Here it is for your viewing pleasure (I was on yet another different drug at the time). So young!

BONUS FACT: In 2011 I was awarded the honour of the “Gutsiest” Canadian in the Maritimes, a contest run by Crohn’s and Colitis Canada (then the Crohn's and Colitis Foundation of Canada).

“Heather is being celebrated for her courage in facing inflammatory bowel disease (IBD) and for her outstanding work to make a difference in her community and in the lives of others. Since being diagnosed with Crohn’s disease at the age of 14, Heather has worked tirelessly to support the IBD community. As a role model to many IBD patients, Heather speaks openly about her illness and has volunteered much of her time to raising funds and awareness to help find a cure. Heather demonstrates a tremendous amount of confidence, courage and strength and is an inspiration to her family and friends. This Gutsy Canadian won’t let anything stop her from reaching her goals and will help as many others along the way as she can”.

To learn more about Irritable Bowel Disease (IBD) You can find the 2018 Impact of IBD in Canada Report here.

Disclaimer:
While I’m an expert on being a Crohn’s Disease patient, I am not a medical expert. If you feel like there’s something wrong going on with your body, please seek proper, professional medical advice.