Guts, Glory, and a Dash of Badassery: My Journey with IBD
Written by: Chantel Wicks, OCT, B.Ed, Hons. B.A.
Updated: November 4th, 2024
*Important: “Guts, Glory, and a Dash of Badassery” is an opinion piece written by Chantel Wicks. Chantel Wicks is a dedicated advocate and experienced IBD patient of over 17 years. She hosts the ‘Guts & Glory’ podcast (gutsnglory.ca), chairs the Durham Region Gutsy Walk, and is the Durham Region Chapter President, actively engaged in building awareness and fundraising efforts for those impacted by IBD. Recognized by organizations like Crohn’s and Colitis Canada and CIHR, she’s a featured speaker at various events and media platforms. Chantel also serves as a Patient & Family Advisor at Scarborough Health Network and a Patient Research Partner on various research projects across the country. In all of these roles, she promotes shared decision-making and patient-centered care. Formerly a teacher of 12 years, she is now the Regional Manager of Community Engagement & Development at Myeloma Canada.
This information should not be used as a substitute for the medical care and advice of your physician.
February 2025 will mark 18 years since my diagnosis of Inflammatory Bowel Disease (IBD). Oddly enough, I find it easier to remember the number of years since my diagnosis than my own age (which is 37, by the way). Trying to capture 18 years of living with IBD in one article feels impossible—my story could fill a whole series, and it’s still ongoing, as it is for everyone diagnosed with this autoimmune disease that currently has no cure.
For many years, I lived in the dark about my disease. Partly because the GI who diagnosed me wrote it down on a prescription slip and literally told me to “Google it.” At the time, I was in university full time and juggling four part-time jobs. I didn’t have time to “Google it.” I took the pills, enemas, and suppositories, assuming I’d feel better in a few months and just get on with my life. I learned the hard way that this wasn’t what I should have done—nor was it how my story would play out.
The past (almost) 18 years have been challenging. I’ve been hospitalized countless times. I’m constantly undergoing tests and procedures, and I regularly see a range of specialists—not only for managing my IBD, but also for help with pain, mental health, movement, diet, and more. I’ve climbed the ladder of medications, from various 5-ASAs and steroids to immunosuppressants, and most recently, I’ve just started my third biologic treatment. I’ve had more colonoscopies, flexible sigmoidoscopies, gastroscopies, infusions, injections, blood tests, and other procedures than a medical chart has room for.
One of the biggest issues I have regarding IBD is the misconception that it is just a “bathroom disease.” Yes, does IBD involve things like uncontrolled diarrhea (with or without blood), constipation, and severe abdominal pain that can literally bring you to your knees? Absolutely! But this is not all that it means to battle IBD. The notion that it’s merely a ‘bathroom disease’ is constantly reinforced in the media and even within industry, overshadowing the reality we live with every day. The use of images showing someone holding their abdomen in pain, hunched over, or, my favorite, sitting on the toilet, contributes to this problem. This portrayal captures only a fraction of what it is like to live with IBD. Focusing solely on this narrative does a disservice to everyone, whether they have an IBD diagnosis or not.
It’s also incredibly frustrating to receive unsolicited advice from strangers, family, and friends who say that if I “just don’t eat (insert random food here), then you’d be fine!” Or that if I mixed in a little yoga with some dietary changes, I could be cured. Can you believe it, folks—cured! And all it would take is a few downward dogs! For the record, diet and regular movement/exercise certainly help manage some symptoms and implications of IBD, but cure? That’s not the case (at least not for me). I’m sure there’s someone out there who feels as if they’ve been “cured,” and to that, I say, “Good for you! Continued wellness!” And bless the hearts of those who mention they had really bad food poisoning once, so they “know how you feel.” They mean well, but no…
IBD has impacted my entire being—both body and mind. It is much more than a ‘bathroom disease.’ The extra-intestinal manifestations and inflammation, treatment side effects, and the love-hate relationship with food and eating contribute to a constant state of uncertainty. IBD changes and continues to change my physical body, leading to weight fluctuations, nutrient deficiencies (along with their challenging complications), relentless pain, and what often feels like never-ending exhaustion. There’s also the increased risk of additional diagnoses like cancer or other related autoimmune diseases, coupled with worries about further complications, the possibility of surgery (or additional surgeries, for some), and the fear of running out of treatment options. IBD is an endless cycle of challenges and adjustments, constantly pushing me to navigate a life that’s anything but predictable.
I am a big believer in acknowledging all the feelings and emotions, especially the not-so-good ones because toxic positivity is real and causes more harm than good. I am also a believer in telling the truth which includes giving the whole picture of what it is like to live with IBD. So, as much as my journey with IBD has been difficult and absolute ‘shit’ at times (yes, pun intended, but remember—it’s not just about shit), it has also afforded me incredible experiences and relationships.
I now consider myself what I like to call a ‘VIP’—a ‘Very Informed Patient’—and a Badass (pun intended)! I host a podcast, Guts & Glory, volunteer as a Peer Support Group Leader, and organize fundraisers and events that not only raise funds but also build awareness for IBD and bring members of the IBD community together. I’m involved in research as a Patient Research Partner and even volunteer as a Patient Advisor for a hospital network. Education and knowledge are powerful tools, and equipping people with the information they need to make informed decisions and be active partners in their care has become one of my life’s purposes.
To my fellow IBD Warriors (and our amazing sidekicks who support us), I say this:
- Get involved with a support network of peers and their loved ones. Reach out to credible, reputable organizations that provide education, support, assistance, and resources. Don’t go through this journey alone.
- Stay educated. The IBD treatment landscape is ever-changing (good news for us!) but staying up-to-date can be challenging. Do your best to keep informed, because let’s face it—dealing with IBD itself is even harder! So, give yourself some grace and take it step by step. Educate yourself, and keep on educating yourself!
- Take an active role in your healthcare and the decisions regarding your disease journey. You’re a partner alongside your care team, and decisions about your body should be shared between you and your doctor(s).
- Keep track of your medical records, test results, and appointment notes. Having this information at your fingertips empowers you to make informed choices.
- Ask questions! The more you learn about IBD, the easier it will be to ask relevant, informed questions of your healthcare team.
- Track your symptoms and environment in a journal—food, bowel habits, sleep, pain, weather changes, stress, etc.—the more detailed, the better. Yes, it’s another annoying, pain in the ass task to remember, but totally worth it. You might be surprised by what you discover over time. Identifying your “triggers” means you can try to avoid them in the future.
- Never stop advocating for yourself and your rights as a patient! I know it’s exhausting—you’ve been diagnosed with a chronic illness that currently has no cure, and on top of that, you need to learn how to self-advocate. It’s unfair, but that’s the reality. Better to be an advocate than to go unheard.
- Strive for a healthy life balance and take care of your whole self. Adopt healthy coping strategies to help manage the physical, mental, and emotional impacts of IBD. Utilize healthcare professionals who are often overlooked, like pharmacists, mental health professionals, and physiotherapists. Nurses and doctors are fantastic, but these others can provide key support as you adjust to a new normal or navigate challenging times.
- Tell your doctor everything. Don’t hold back out of embarrassment or any other reason. Your medical team can best help you when they have all the information. Trust me—they’ve seen and heard it all!
- And remember, colonoscopies aren’t that bad, especially compared to everything else we face with IBD. The prep, however? Two thumbs down. Make sure you’ve got the bathroom to yourself for colonoscopy prep time—though, let’s be honest, anyone in your household usually steers clear once things start “moving.”
While IBD has brought many hardships, it’s also guided me to become a better person. Over the years, I’ve spoken to thousands about what it’s like to live with this disease. I’ve traveled, met incredible people, and learned humility. I’m truly grateful for my good days and for the health I do have, and I’ve built a badass, authentic network of friends and family. My husband, Daryl, and our pup, Archie, are the two best companions anyone could ask for. Though neither of them were with me from the beginning of this journey (almost 18 years ago), they are here now, and I thank the universe for their presence and support.
You’ll have difficult days, weeks, maybe even months—but things will get better. When you’re feeling down, let yourself feel all the emotions; let them out. Just don’t stay down too long. Get back up, and keep on keeping on!
Remember, no two people with IBD are alike. Each person’s triggers, responses to treatments, the way the disease manifests, and how they handle flares, remissions, and the mental and physical tolls—it’s all unique. My story may share similarities with yours, or it may be completely different. Regardless, your journey is valid. You did nothing to cause your IBD; it just happened. Shitty, I know. But you deserve to live a life that feels complete and fulfilling. Don’t forget that.
Thank you for taking the time to read and learn about my story. Strength & Positive Thoughts.
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