what it feels like: turning lifelong crohn's disease into fundamental change
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after his diagnosis, carter was pulled out of school because of his symptoms and because of the medications he was on to try to curb the inflammation.
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carter vossen-duguay was just seven years old when he started experiencing significant amounts of abdominal pain, a common symptom of inflammatory bowel disease (ibd).
articulating what was going on in his body wasn’t easy, and not knowing what was happening to him plagued his young mind as he tried to communicate his experience to his family and doctors.
“looking back, it does make me upset to think about because i was so young, and i really didn’t understand what was going on at all,” carter said, recounting the confusion he felt when he began experiencing symptoms.
over the course of the following months, carter was in and out of the hospital a total of seven times, with complaints of severe pain and being unable to eat, before he was finally admitted to iwk health in halifax, nova scotia.
two weeks and a colonoscopy later, it was confirmed: young carter had severe crohn’s disease, with inflammation so bad that a good portion of his gastrointestinal tract was affected.
“the inflammation had taken over so much. i don’t remember the exact percentage, but my gastroenterologist said that it was really, really bad for my age,” carter said. “it had fully taken over my digestive system, and it was really hard to get under control.”
dealing with a diagnosis as a young child
after his diagnosis, carter was pulled out of school because of his symptoms and because of the medications he was on to try to curb the inflammation. he missed an entire year while doctors tried to find something that would help his young body heal.
he ended up having to stay in halifax for weeks on end during that year, being put on prednisone, a steroid used to curb inflammation in crohn’s disease and other inflammatory conditions. unfortunately for carter, the experience with prednisone wasn’t positive.
“the nurses weren’t even monitoring how much was being dosed, and i became severely depressed because of just the large amount of steroids,” he said. “i didn’t want to get out of bed. i didn’t want to talk to anybody. just, it wasn’t good.”
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being away from his peers at such a young age was also a challenging aspect of living with crohn’s disease that carter had to learn how to contend with. because he was in and out of the hospital and wasn’t in school, he had no connection with his friends and “missed out on a lot growing up” because of it.
he started tube feeding after being diagnosed, so he was restricted significantly in what he could eat, and going back to school with the tube was incredibly tough. between the ages of seven and 10, requiring extra care for feeding at home and school became the norm.
“i feel like in those few years, i grew up really, really quick, and i matured really quick,” he said. “i feel like that also has set me on the path … where i’ve always just kind of knew what i wanted.”
now, at 17 years old, carter has chosen a journey toward helping others because of his personal experience with crohn’s disease, and he is currently enrolled in a bachelor of health program at the university of new brunswick saint john and a volunteer and advocate for others living with ibd. he also loves cooking and spending time with those who mean the most to him.
now that carter’s condition is much better managed, he looks back on his experience with the perspective of someone grateful for all that life has given him, even the negatives.
“i’m glad of how far i have come. i guess, from that standpoint, and how much i have grown from that because i know more about myself now and what my body needs, how to take care of myself,” he said. “i know how much my treatment, like how important that is to me and all of that kind of stuff. so, that’s why i really prioritize that and all of those things.”
finding his tribe and leaning on his support system
living with crohn’s disease is tough on people of all ages, but during childhood, it can rob a person of the normality of growing up. because it’s an invisible disease, a lot of carter’s peers didn’t understand his experience and what he was going through, which made it difficult to find those who he could genuinely connect with.
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his gastroenterologist suggested carter attend camp brigadoon, a year-round camp program that brings children living with health conditions together to foster connection, friendship, acceptance, and belonging.
because carter was so young when he was first diagnosed, he didn’t meet the age requirement until four or five years after his diagnosis. but when he finally was able to go, the experience was “surreal.”
“it made me feel like i wasn’t alone,” he said. “being such a young age and really not knowing or not understanding really what it meant or just going through so much and with so little people understanding, do you know what i mean? it would be like, ‘oh, my grandmother has it,’ or ‘oh, my great uncle has it.’ but actually meeting people who have it was a really rewarding opportunity.”
carter continued to go to camp brigadoon for three or four more years to stay connected with those who understood his experience and accepted him for who he was, crohn’s and all.
aside from friendship support, carter notes that his parents and medical team were the “best support system” a kid could have asked for. his parents, who both worked full time, spent the better part of their time caring for carter and ensuring that he had the best medical interventions, regardless of how they had to change their lives to do so.
“i’m beyond thankful and beyond words for just everything that they’ve done for me along the way,” he said. “and it’s not even that, but just how much it’s shown me, too, how strong and dedicated people can be. it really just shows you a lot that you can still go through so much but still be so resilient in such bad times.”
he credits who he grew up to be, with all his strength, work ethic, and generosity toward others, to his parents and their action-backed representations of what it means to truly care about another person above themselves.
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his parents helped him get through the most challenging days of his life by taking him to and from the hospital that was four hours away from their home, changing his feeding tube, and being role models for how a person should care for others and interact with the world around them.
he recounts how harrowing the experience was, but his parents never wavered in their support, dedication, and positivity to help him become the healthiest he could be.
“it really did open my eyes about things that i still carry on today, and i feel like that has a big impact on my work ethic, just growing up with parents who strive for that and have always cared and always been there and always wanted what’s best, and it was always the same,” he said.
his support system also helped him maintain as much positivity as possible throughout his early years with crohn’s disease and beyond, instilling in him values that helped him continue to want to do good for himself and others.
turning a lifelong disease into his life’s goal
today, carter is enrolled in university with the goal of studying medical sciences. he is one of 15 participants awarded the crohn’s and colitis canada’s abbvie scholarship, which is dedicated to helping students living with ibd reach their academic goals. it provides $5,000 to “inspiring students attending a canadian post-secondary institution.”
the money is designed to offset the financial costs of university so that young adults have less to overcome and more time to make a meaningful difference in their communities and the lives of others.
carter is ecstatic to have been chosen as one of the 15 recipients, and he plans on using his scholarship and everything he’s learned from his personal experience to “change certain aspects for the better” by creating fundamental change for others who will walk the same path with crohn’s and other diseases because his “past is just so engraved with what” he’s currently doing.
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he also wants to raise awareness of ibd by sharing his story and turning his experience into a career in medical research. for him, the scholarship means “a lot of hope” for his future and that he’s already accomplished a lot of what he’s set out to do.
“it makes me feel like i’ve already done everything,” he said, later continuing, “my biggest hope is to just shine a broader and bigger light on the many issues that people do deal with and that nobody should deal with it alone and how unique everyone’s stories are.”
“my goals are to strive for success and make an exceptional difference in the health field … to hopefully bring awareness to all of this and just hope for an exceptional difference in a positive way with my studies and beyond.”
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