what it feels like: facing the challenges of colitis and anxiety with strength and hope
“i look back at my experience with anxiety, my experience with colitis, and there’s so many times where i was just feeling so down, like, how am i going to go on kind of thing. but then i can.”
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“we’re really lucky that we live in this time with all of this research. there’s so, so much hope," says kaylie voutier, who lives with colitis and anxiety.
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kaylie voutier started experiencing the telltale symptoms of a gastrointestinal disorder, including blood in the stool and discomfort, in 2011 when she had just reached adulthood at the age of 18.
initially, the inflammation in her system was localized to her rectum, granting her a diagnosis of proctitis in 2012. however, the inflammation began spreading throughout her entire colon, and eventually, she was diagnosed with colitis in 2016.
today, kaylie’s physical condition is well-managed, with remicade being a saving grace, giving her the freedom to participate in all the activities she enjoys.
“i’m able to hang out with my boyfriend and my family and be active and volunteer,” she said. “i’m able to do all of these things, but it’s thanks to the medication.”
kaylie, who is currently working as a cataloging technician at a library and volunteering with crohn’s and colitis canada, recalls that it wasn’t always this controlled. when it started, and she hadn’t yet begun to feel relief from her symptoms, it affected her in all aspects of her life.
she was able to work, but eventually, the symptoms got so bad she had to be admitted to the hospital to get a blood transfusion.
“that was scary because i’ve never had to stay in the hospital before,” she said. “that affected me a lot.”
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the physical effects of a chronic disease can be debilitating, but they can also drive the development of mental health conditions as well. kaylie, who had anxiety before her diagnosis of colitis in 2016 but hadn’t yet realized it, experienced a steady increase in her anxious feelings, which played a significant role in seeing her anxiety through a clearer lens.
“looking back, i can see all those instances of my anxiety acting up, except i didn’t have a word for it back then. i didn’t understand what it was when i was younger,” she said. “it wasn’t until 2016 when my colitis flared up, and my anxiety also … i finally started paying more attention to it.”
fighting through her own thoughts
anxiety disorders can be experienced in many different ways and present with various symptoms, both physical and mental. for kaylie, while she does get the typical physical symptoms of stress, it’s more so the lack of control over her own brain that becomes the issue.
“my brain just goes out of control with thoughts,” she said. “i can’t focus on other things and just worry and worry and worry.”
even the smallest of mistakes could send kaylie into a spiral, catapulting her thoughts toward the worst possible outcome imaginable, like getting fired from work after making a small and insignificant error.
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along with her anxiety, kaylie also struggled with other feelings that drive anxiety, especially fear – fear of the unknown, fear of what could happen, and fear of how bad it could get.
“there’s kind of always that fear like, what’s going to happen in the future? i tell people, you know, my body was like, you’re an adult now. i’m going to give you a chronic illness, hurray,” she said. “i’m dealing with all of this stuff now. what’s my body going to be like when i’m older when people normally start regularly experiencing health issues?”
she uses humour to help her cope with it all, saying things like “stuff to look forward to,” but the fear, along with the combination of colitis and anxiety, continues to have a hold of her.
leaning into knowledge and care with chronic conditions
when kaylie was first diagnosed with colitis, she had no idea what it was or how it would affect her. so, she began to teach herself as much as possible about the condition to arm herself with knowledge on how to best care for herself and her physical body.
she also currently volunteers to help others gain access to more information about colitis and ibd so that when they do get diagnosed, they have an easier time finding out what that means for themselves and their lives going forward.
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“that’s part of why i volunteer, too. i want to share this because more people need to talk about it because it could happen to anyone,” she said. “it’s better to be prepared and know a little bit about it, and then it’s not as scary.”
she talks about how education can be a significant help for people diagnosed with colitis, citing her firsthand experience with another health condition she knew a lot about before she developed it: psoriasis.
“they did a biopsy of my scalp, and it turned out to be psoriasis. i had a great aunt with psoriasis, so when they said, ‘ok, so it’s not the fungal infection that we thought it was, it’s psoriasis,’ i was kind of like, ok, i know what that is like. i understand a bit about it, so it’s not as scary.”
unfortunately, she wasn’t as prepared with her colitis diagnosis because no one in her family or friend circle had the condition, leaving her to go into the experience blind and causing her anxiety to worsen because of it.
after learning about her disease and the medication options offered at the time for anxiety, kaylie had a choice to make – take medication that could worsen her gastrointestinal symptoms to deal with her anxiety or address her colitis first. she chose the latter, saying she would “let my digestion system calm down a little bit first.”
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during that time, the anxiety got so bad that she could no longer tackle one problem at a time, and she began taking prozac for her mental condition. she also attended different anxiety programs to learn cognitive behavioural therapy techniques.
she looked toward cognitive distortions as a way to help shape her mind so that she could see things from a less anxious standpoint.
“learning about those cognitive distortions, those thoughts, that really helps me to identify that,” she said when speaking about her own anxieties, which had become so bad that she was almost certain she wouldn’t be able to work without anxiety medication.
after starting the medication and learning all that she could about behavioural therapy techniques, things were looking up for kaylie. she was getting through it. but eventually, she went off her anti-anxiety medications and saw her anxiety levels rise once again.
kaylie also noticed that the worse her anxiety got, the worse her colitis was, too. the two acted in unison with one another.
during one particularly stressful month, when kaylie’s grandmother was sick in the hospital and her great aunt had passed away, her mental health worsened, leading to a flare-up of her colitis. eventually, she ended up back on anxiety medication.
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finding strength in finnish traditions
while kaylie faces the hardships of having both anxiety and colitis, she does not allow herself to stay in a negative headspace for longer than she has to.
with the interventions for both types of conditions improving due to medical research and innovation, she’s happy that if she had to get colitis, it’s happened at a time when medical science is moving in the right direction.
“it’s just having faith in the medical system and the research and all of that,” she said. “as awful as it sounds, now’s the time to have ibd kind of thing, right? because there’s so much research being done about it. people 100 years ago, they were suffering. whereas now, there’s so many treatments and options. people are still suffering, but it’s a lot better than it was.”
she also finds strength in her finnish roots, specifically a unique concept known as sisu, which has no direct english translation.
“there’s something that we grow up with (in finnish culture) called sisu, and it can’t be directly translated into english, but it means stuff like determination, perseverance, strength, things like that,” she said. “one of my favourite translations of it is that, even when you’ve come to an end, you continue on anyway.”
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“i look back at my experience with anxiety, my experience with colitis, and there’s so many times where i was just feeling so down, like, how am i going to go on kind of thing. but then i can.”
kaylie utilizes sisu in her life as a way to remind herself that what she faces is challenging, but it’s not something that she can’t make it through with her own inner strength and resilience.
“that’s what i appreciate about this whole thing: i’ve really seen that sisu in action,” she said.
as for her advice for others who may be going through the same thing, she encourages people to learn as much as they can about the brain-gut connection and have faith in the current breakthroughs in medical science that are making both colitis and anxiety that much easier to treat—and to find their own sisu, of course.
“we’re really lucky that we live in this time with all of this research. there’s so, so much hope. and i think it’s important for people to have sisu, just like i do.”
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