ulcerative colitis: 'no one believed me'
7 minute read
"my nurse practitioner wasn't empathetic to the fact that i, as an adult, was struggling to make it to the restroom," says jana osbourne. getty
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in canada, more than 300,000 people live with inflammatory bowel disease — a cluster of conditions that lead to inflamed or ulcerated gastrointestinal tract. the most common forms are crohn’s disease and ulcerative colitis, both of which cause symptoms that impact a person’s quality of life. and while medication and surgery may help, most people struggle with the daily challenges brought on by the lifelong disease.
jana osbourne was diagnosed with ulcerative colitis at age 33. prior to the diagnosis, she had a thriving career in public service, a teaching position at a local college, and volunteered her time for various causes on weekends. in recent years, living with colitis has dramatically changed her life, her career and her plans to have a family. this is her story.
this interview has been edited for length and clarity.
in hindsight, knowing what i know now, i’m sure that i had a milder form of colitis for many years. in high school, i often had a sensitive stomach and couldn’t eat a lot of foods because i’d have nausea or would have to run to the washroom. when i was 30, i developed extreme fatigue, migraines, dizziness and brain fog, but it wasn’t until several years later that i sought help for the digestive symptoms.
i can still recall every last detail of that day. i was at a work conference and i remember having a small meal that consisted of a chicken breast, a piece of broccoli and cauliflower — that was a “safe” option that wasn’t supposed to upset my stomach. within 30 minutes of leaving the conference, i was in the middle of nowhere, frantically looking for a washroom. at a strip plaza, i found a grocery store, but the restroom was out of order and under construction, and unsuccessfully, i tried to make it to a neighbouring restaurant. that was the first time i experienced [bowel] incontinence. when i brought it up to my nurse practitioner, she didn’t seem concerned. in fact, she dismissed my symptoms even after i suggested that i may have colitis. it took about six months for her to send me for a colonoscopy and refer me to a gastroenterologist who right away diagnosed me with ulcerative colitis.
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no one was concerned that i had experienced bowel incontinence
while i waited for the referral, i made four trips to the er, and i ended up with a perianal abscess, which occurs when one of the anal glands becomes infected. i was in so much pain, and yet, the er doctor briefly looked at me and said: “i think you just need bedrest.” i was sent home, but the next day, the abscess ruptured. i was told that if it had ruptured inside, the bacteria could have seeped into my blood and i would have been septic. and because this first episode wasn’t properly addressed, it led me to having perianal disease. the entire experience surrounding my diagnosis was incredibly frustrating. there was no personal investment from health-care professionals, and i didn’t feel that my nurse practitioner was empathetic to the fact that i, as an adult, was struggling to make it to the restroom.
the diagnosis changed the course of my life. i was very career-driven, i worked long hours, not because i had to, but because i was passionate about my work in public service and i saw that my work was positively impacting people’s lives. as a result of my condition though, my career ambitions have changed. i always thought that i’d be a director by the time i was 40, but at 36, i realized that it’s not going to be possible for me to put in the work and the hours required to serve in that role. apart from my full-time work, on weekends, i also volunteered for various causes, and in the evenings, i worked as a college instructor. a couple of years after i was diagnosed, i had to quit teaching, and for me, it truly felt like i was giving in to the disease.
i developed perianal disease
having a chronic illness has also impacted my plans to have a family. my husband and i went through the process of being approved to adopt a child through the public system — we attended numerous training classes, hosted home visits and childproofed our home to ensure that we can provide a safe environment for foster children who could potentially be adopted. as the final step of the evaluation process, my nurse practitioner submitted all the medical paperwork, and soon after, we received an email advising us that our application to adopt has been rejected based on my medical information. it pains me to know that there are so many children out there who need a loving home, but because i have this condition, the system somehow believes that i’m the worst option for them. i was heartbroken.
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ulcerative colitis is an invisible illness and i have never looked sick. at one point after my diagnosis, i made a decision leave a job that i loved because management didn’t believe me. despite the fact that i provided medical information and that i’m very aware of the requirements to accommodate people in the workplace, when you’re the person who is sick, you have to decide what’s more important: fighting for your rights or protecting your health.
“when you’re the person who is sick, you have to decide what’s more important: fighting for your rights or protecting your health,” says jana osbourne, who lives with ulcerative colitis. supplied
now, i am fortunate to be in a supportive work environment, where i have a job that offers good benefits and sick days, but living with colitis has impacted me financially in other ways. i still experience exhaustion and fatigue and can’t do all the things i used to do, so i pay someone to clean my house, and during covid, i had to have a second bathroom built in my home because i need unobstructed access to a restroom. parking fees at the hospital and at various clinics, plus all the medical supplies, also add up.
ulcerative colitis is an invisible illness
for me, other than stress, it’s hard to pinpoint what could trigger a flare-up. on a good day, i can eat a small salad, but on a bad day, a half a piece of lettuce can send me to the washroom. the best advice i ever received came from a colleague who has crohn’s. she suggested that i eat at mcdonald’s on days when i feel like i can’t handle any other food. turns out, she’s right.
i can have a quarter pounder and fries at mcdonald’s without any reaction, and it’s probably because the food is so processed, the gut doesn’t have to do any work to break it down. gluten is also a safe food for me. i can eat a bagel anytime, but anything fibrous is a trigger. with whole grains and fruits, i get intense cramping and pain, and have to run to the washroom.
when you google ulcerative colitis, the first thing that comes up is people who are underweight, but that’s not true for everyone. prior to the diagnosis, i was able to manage my weight, but right now, it’s not easy. and because i am overweight and don’t have the weight loss that people expect to see, some may believe that my colitis can’t be that bad. i still have days when i feel lethargic, dizzy and have brain fog, but for the most part, medication helps relieve some of the symptoms.
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ulcerative colitis treated with infusions and b12 shots
i also get biologic infusions every four weeks, with the goal of the treatment being to wipe out my immune system around the gut to help stop it from attacking the healthy cells. i also get vitamin b12 shots, but my hair is thinning and my nails are weak because my body doesn’t absorb nutrients. before colitis, i couldn’t sit still — the odd time i would watch tv, and i would exercise at the same time. now, i can watch four episodes of a show while lying in bed. it’s not healthy, but i have to accept the fact that sometimes, it’s what my body needs.
in those early days, i turned to the crohn’s and colitis canada for information on symptom management and to learn about the latest treatments and research. i also joined different support groups on facebook to find people who understood what i was going through. it felt incredibly freeing to share my story and learn from the experience of others. ulcerative colitis is an invisible illness, and people need to have awareness to be more empathetic and understanding. i grew up in a small town, in an environment where you were expected to fit into a clearly defined mold. but as an adult, i learned that i’m much happier when i can be my authentic self and talk about the things that matter to me. that’s why it’s so important for me to share my story. i’m hopeful that one or two people who are going through those first symptoms or find themselves in a situation where no one believes them, that they can learn from my experience and know that they’re not alone.
sometimes, it feels like i’m fighting colitis on so many fronts, but i still haven’t got to a stage where i feel like i’m in full remission. the other day, a colleague shared that they haven’t taken a sick day in years, and i must admit, it made me feel bitter. it’s not something that i’m proud of, but the truth is, i wish i could be the person whose life hasn’t been upended by an illness.
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for more information about ulcerative colitis and inflammatory bowel disease, support and to connect with others, check out the gi society, the canadian digestive health foundation and crohn’s and colitis canada.
maja begovic is a toronto-based writer.
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