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what it feels like: inflammatory bowel disease 'doesn't mean that your life is over'
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in october 2024, katryna loewen had a total colectomy, removing her large intestine and the formation of an ostomy in her abdomen for waste illumination.
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talking with katryna loewen is an uplifting experience. she’s a public health nurse in rural manitoba who has been through some challenging health issues of her own, but she radiates optimism and a willingness to share her story to let others know they’re not alone.
as she puts it simply, “we all have these different chronic conditions and they’re just pieces of us, but they don’t define us.”
katryna, 34, lives with ulcerative colitis, a type of inflammatory bowel disease (ibd) that causes inflammation and sores in part of the digestive tract—which means she’s spent a chunk of her life under the constant stress of needing to run to the bathroom. she’s dealt with severe abdominal pain, diarrhea, rectal bleeding and weight loss, which are common symptoms that weaken the body and take a huge toll on mental health as well.
“yeah, it sucks, but this doesn’t mean that your life is over. there’s still good in life. you still need to keep going and take care of yourself,” she says, adding connecting with others with ibd can be a huge boost.
connect with others for support, understanding, and strategies to cope
“it really helped me to find other people on social media or listening to podcasts so if you’re struggling with incontinence or diet or people telling you how good you look when you’re losing all this weight and you feel like crap, hearing other people say i have been there, you see yourself reflected in other people’s stories. it just makes you feel less alone.” she’s documented her journey on instagram @goingpains88 and highlights the resources and valuable support from crohn’s and colitis canada.
katryna didn’t start out with stomach trouble or the tiredness that gradually took over her days. she was an athlete who grew up playing hockey and rugby, loving the fierce contact and competition. she went through nursing to work in the hospital surgery obstetrics ward, which was physical and rewarding.
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then in november 2020, she had a flurry of symptoms. “very abruptly, i started dealing with diarrhea, bleeding, having trouble eating, things like that. i thought that it was colon cancer,” she says. “my system was totally screwed up. i could kind of tolerate eggs and rice.” during this, she had also moved in with her boyfriend, joking that she “moved right into the bathroom. so our relationship had to get really comfortable pretty quickly.”
her colleagues noticed her weight loss, thinking it was intentional, telling her she looked good (which made her inwardly cringe). “i did share a little bit, but not a lot because it’s not a sexy disease. if you are getting nausea from a treatment or something, people are like, oh, that’s so bad. but i’m running to the bathroom to poop 15 times a day. and it’s blood. it’s diarrhea. people don’t want to hear it.”
she also experienced anxiety before her ibd diagnosis and got help through counselling, but the thought of facing colon cancer fueled her stress and uncertainty. her symptoms got worse as a result. she went to see her nurse practitioner who acted quickly to schedule an investigative scope for december 24, 2020.
“i remember very clearly telling one of the nurses if they see anything, do not call my parents, do not give anybody an update because i was that sure that it was going to be cancer. i was like, we’re going to get through christmas and we’re going to deal with this after christmas.” she recalls. when she woke up, the surgeon told her it looked like ulcerative colitis and they had taken biopsies to confirm.
“i didn’t really believe it when they said that it wasn’t cancer,” she says of the enormous relief. her gastroenterologist started her on medications for symptom management of ulcerative colitis, and she went back to work. by late january, she was eating, exercising and feeling good through all the strangeness of the pandemic. she got engaged and started planning her wedding for july 2024.
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the uncertainty of living with ulcerative colitis is part of the struggle
but in late fall of 2023, her symptoms flared up again. “i struggled with constant pain, lived in the bathroom and was absolutely miserable.” she got through her workdays only because the office had a bathroom across the hall. to try to find a solution, she went through trialing three different medications, iv infusions, injections, and pills, but nothing worked.
“there was a lot of anxiety. so they say to you with these diseases to eliminate stress. but when you’re talking about medication doses that are $3,000 and maybe they’re covered, maybe they’re not, maybe they’re pharmacare. so that was another piece of it, too. that was difficult.”
the couple went ahead with their wedding, but katryna was panicked to get through the outdoor ceremony and had a portable toilet nearby. but she’s always been determined to make the best of things, much like her mom, which is a message she’d like to pass onto others.
“my mom struggled with chronic illness and still does. she was diagnosed with rheumatoid arthritis in her early 30s and worked to manage that while having young kids at home and never let it define her,” she says. “a lot of my endurance and determination is from my mom and having grown up watching her on her journey.”
next her gastroenterologist referred her to a colorectal surgeon who discussed options. in october 2024, she had a total colectomy, removing her large intestine and the formation of an ostomy in her abdomen for waste illumination. the surgery was successful, allowing her to fully embrace her love of enjoying food, working out with yoga and weights, and being free from the abdominal pain and pressure. it’s been a shift in accepting where she’s at and living for the moment (although it wasn’t instant happiness).
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life changes with an ostomy pouch
“i remember being so mad, thinking i do not want this poop bag on the outside of my stomach. i don’t want to deal with that. and now i’m just like, oh my gosh, i wish i could go back and tell my previous self that girl, it’s going to be fine. you’re going to get your life back,” she says laughing. “now it doesn’t even phase me. obviously there are times when it leaks or something happens, so that’s inconvenient. but i can eat steak.”
another important tip for people is not to ignore symptoms and reach out for help. earlier detection means better outcomes for the more than 320,000 people in canada living with ibd.
“paying attention to your symptoms, writing them down and having all that information” can help your primary caregiver understand and take appropriate steps for further tests and referrals. quality of life is worth fighting for.
“i feel amazing. i just took a trip to new brunswick to meet my new niece and i didn’t have to worry about the flight and what i was eating,” she says.
“and it’s been so lovely to be going back into the kitchen and making meals for my husband and i. that’s also one of my love languages, being able to make meals for people again, that’s just a really important piece for me.”
world ibd day is may 19, 2025. for more information about ibd, visit crohn’s and colitis canada.
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