“For now, I can live my life in a way that I could have never imagined” – Tayla’s story

Growing up, I was always the kid with the tummy issues, but it wasn’t until later that I discovered the reasons for those issues.

Going into high school is generally a tough time for most kids, but adding constant stomach aches to the picture made it much more difficult than originally expected. For years I would complain to my mum that my stomach hurt. It didn’t matter when; before food, after food, when I was nervous when I was excited, it didn’t matter. It followed me like a dark cloud. For years I was told that I was just constipated and that I didn’t need to keep returning to the doctors, but in 2018 that took a turn.

The pain, nausea, fatigue, aches, headaches, and more symptoms set in, and the severity reached an all-time high. My parents were sick of me being ignored by doctors, so we went and found a new one. By March that year, after a very traumatic colonoscopy, I was finally diagnosed with Crohn’s disease. As the year continued, my Crohn’s worsened. For a while, it was a whirlwind of different immunosuppressants, opioids, steroids, missed school, nasal gastric tubes, MRIs, scans and, even still, my Crohn’s was a raging beast that did not want to be ignored.

At the beginning of 2019, my gastroenterologist decided It was time to seek help from biological medications, also known as Tumor Necrosis Factors, which are a newer type of Crohn’s disease treatment that targets the part of your immune system that is not functioning (in my case, my gastrointestinal tract) and completely suppresses it. This led to me attending the hospital for infusions. We thought this treatment was ground-breaking and, according to my blood tests, it put my Crohn’s into a state of remission. For a while, it was the best I’d felt in a long time. That lasted until I started experiencing excruciating stomach pain on a daily basis. In fact, it was constant. This pain could only be described as someone stabbing me with a burning knife. This, while feeling horrifically nauseous. Every time I ate, drank, exercised, stood up too long or even walked a small distance, my symptoms would come roaring in.

For much of 2019, I did not return to my specialist as — every time I did — he would say that I was fine, and that my Crohn’s was still in remission. I still remember sitting in his office in Melbourne after missing most of year 11, crying because I felt I was making it all up. Finally, my specialist decided to conduct an MRI, and low and behold, it showed a bowel obstruction. Upon returning to my gastroenterologist, he explained that I had severe scar tissue through my terminal ilium and another portion in my large bowel. I remember asking my specialist (who shall not be named) what was next? How were we going to stop these symptoms so I could go back to living my life again? His response was to live with it.

A bowel obstruction under the length of 7cm can be cause for a procedure where it can be stretched out with a balloon. Mine was just under 40cm, but no! Live with it he said. So, I did, at least for a little while. I attempted to return to school (though I failed miserably at that) while taking extreme pain and anti-nausea medication daily. I quit two of my jobs, and was surviving off custard and mashed potatoes.

At the start of 2020, going into my final year of school and VCE I was still having these symptoms daily. My parents and I pestered my specialist constantly, and finally, he decided I was ok to visit with a colorectal surgeon for a consult (though my specialist made it perfectly clear to us that he did not think it was necessary). I visited my surgeon at the beginning of the week, and I was booked in for a bowel resection the following week. Before this visit I had just turned 18. My first big decision as an adult wasn’t “when will I get my license,” it was deciding whether to undergo major surgery during both year 12, and amid the Covid-19 affected years.

Long story short, I got the surgery the following week and ended up having 30cm of my terminal ileum removed and 10cm of my large bowel removed. The recovery from this procedure was one of the worst things I had experienced in my life. It was beyond horrendous and it’s not something I would wish upon anyone. Since my surgery in 2020, after a few switches in biologicals due to allergic reactions, I have finally achieved a state of clinical remission with the help of a new gastroenterologist who believes every symptom and works tirelessly to ensure I’m living life the best I can.

Remission for Crohn’s does not mean that I am cured. In fact, I still have symptoms constantly and I await the day that my Crohn’s becomes active again.

But for now, I can live my life in a way that I could have never imagined back in 2018.

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