To the misunderstood and misdiagnosed – Brooke’s story

My name is Brooke, I am 23 years old and I was diagnosed with Crohn’s disease at the age of 10.

My symptoms first started around the age of 8, which is a time in your childhood that I think many people would remember quite fondly. I was a happy and bubbly kid who enjoyed school and spending time with friends. Above all else loved to dance.

At that time, I suddenly started to have episodes of prolonged constipation, decreased appetite, rapid weight loss, eczema, red raw skin from head to toe (and everywhere in between), constant fatigue and mood swings, and of course: pain pain pain. My parents did what any parent would do and took me to doctor after doctor, all of which resulted in separate symptom management.

I would battle daily bathroom accidents as I either always had the urge (but was constipated) or was loaded up with laxatives and couldn’t control my bowels. I’m not sure any aspiring ballerina would be happy to admit to wearing pull-up diapers everyday. I was embarrassed and in pain and it seemed that no doctor was willing to really help me, brushing off my symptoms and even suggesting I was doing it for attention.

For two years, these symptoms continued. An honest doctor at our local hospital, who recognised that I was seriously ill, admitted that he personally couldn’t help me, and sent us to the major children’s hospital about an hour away from our town. After a few hours in the ED, I was admitted for investigations as I began vomiting up bile due to my severe anorexia and malnourishment. Understandably, I wasn’t the biggest fan of doctors this point, and screamed and cried when anyone tried to examine me. In the end they had to put me under sedation to properly examine me and confirm their suspicions. By morning, a lovely gastroenterologists sat my parents and I down together and informed us of my new diagnosis. Crohn’s Disease.

It was scary news as we knew nothing about this disease or what it would mean, but we were glad to finally receive a diagnosis. This marked the beginning of my journey as I was severely ill, extremely underweight (only 20kg) and so weak that I had to be restricted to a wheelchair (though my sister had plenty of fun pushing my down the hospital halls against my best wishes). I was in and out of hospital for months trialing different medication combinations, attempting to stay on a liquid diet to heal my bowel (which did not last long … I had barely eaten for 2 years!) and allowing my weak body to recover. I celebrated my 10th birthday in the hospital playground.

Now, 13 years later and I have been able to manage my disease quite well with infliximab infusions, and have just transitioned to the injection mode which is much more convenient. I have had minimal relapses and have thankfully been able to have a relatively healthy and happy adolescence/early adulthood.

I owe my life to my parents for persisting with the notion that there was something wrong with me, to the doctor who admitted he didn’t know what was wrong with me — so referred me to someone who might — and of course, to the gastroenterologist who literally saved my life! These key people, as well as my journey, are why I have aspired to become a doctor myself. While I haven’t made it there yet, I will continue to work for everyone who ever has, and ever will, be misunderstood and misdiagnosed.

To share your story, click here.