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Katie’s story: My disease, not my life
I’m Katie, I was diagnosed with IBD when I was 16 years old. I have recently joined CCA as part of the YEP! Program and would love to introduce myself and share my journey with IBD. My story is one I have been afraid to share for a long time, and one that I have kept hidden from many people in my life, even my friends. Whilst IBD may not be visible from the outside, its effects are very real and difficult to deal with, especially at such a young age.
My journey began suddenly and unexpectedly, in October of 2020, when I began having symptoms of constant nausea and diarrhoea. When these persisted, I visited my GP, who suggested it was a virus that would resolve on its own. Weeks later, the issues worsened, and I underwent further testing and a paediatric consult with a resulting diagnosis of anxiety. As the symptoms continued still, I tried everything to stop the diarrhoea and the nausea. Nothing worked. From this point, I had to miss school, cancel social events, and stop sport due to the debilitating symptoms. After a total of 4 months searching for a diagnosis through blood tests, X-rays, ultrasounds, and scopes, I was finally diagnosed with Ulcerative colitis in February of 2021.
Hearing this news about a diagnosis of a chronic illness at 16 was extremely confronting and, more than anything, terrifying. From the day of diagnosis, my IBD was my life. It controlled everything from where I went, what activities I could do and even what I ate. More than anything, the toll on my mental health was significant. I was certainly embarrassed about the nature of my condition, leading me to hide it from my friends and avoid opening up to my family about how I was feeling.
The search for medication to control my symptoms and induce remission was a long, rigorous process lasting around one year. I started on Pentasa, and soon began taking azathioprine, known as imuran. This is an immunosuppressant, meaning I had decreased immune function and increased risk of illness, skin cancer and other possible side effects. Within this time, I underwent periodic blood tests and doctor appointments, and suffered several flare ups. Even when my symptoms were controlled, I lived in constant fear that they could recur at any moment. In February of 2022 I was officially declared in remission. Hearing this news after having my life run by IBD for almost 2 years was unbelievable. I could finally get my life back and be a normal teenager. In December of 2023, I was able to stop taking imuran, and have my condition managed with Pentasa alone (a much safer medication).
Despite all the physical and mental pain I endured with this illness, I believe I wouldn’t change it for the world as it has instilled in me resilience and strength I wouldn’t have without my experiences. Throughout the progression of my illness, I was in senior years at school. I managed to complete year 11 and 12 and move onto university. Currently I am 19, in my second year of a bachelor of Pre-Med at the University of Wollongong, with hopes of attending medical school and becoming a doctor in the future, so I may save others the way my IBD team saved me. I am also proud to be contributing to a study with UNSW in IBD microbiome research in hopes of discovering the cause and possible cure for IBD.
This year, I am also participating in the Live Fearless Challenge in the hopes of raising awareness and funds to support anyone else suffering from IBD as I have.
If I could give any advice to other IBD sufferers, don’t let your disease define you, and don’t feel embarrassed to share with others as it is a lonely and terrifying journey to face alone.
You can support Katie’s Live Fearless Challenge campaign here!