Too young to be sick
By Rose Mitchell
After 20 years of symptoms, testing, and being told I was “too young” to be so sick, I was diagnosed with Crohn’s disease in 2008 – about one month before my 27th birthday.
Before my diagnosis, I had every test possible, a botched appendectomy, and a lifetime of pain, bleeding, and alternating constipation and diarrhoea. I felt like I had lost my youth to Crohn’s and the debilitating pain and anxiety it caused. During that time, I worked and studied, earning my marketing degree, but not being able to enjoy life because I was so sick all the time.
The day of my diagnosis, I was so relieved to finally have answers, and set about educating myself about IBD as much as possible.
I also started doing things to enjoy my life, including travelling, concerts, and all the things I felt like I’d missed in my younger years. We’d tried several different medications, with Remicade (infliximab) being what finally put my Crohn’s in remission in 2011.
In my best health ever, I studied an accelerated Master of Teaching in 2012, and became a secondary teacher at the end of that year. The years since then haven’t been without challenges, but I still travelled and enjoyed life as much as possible.
In 2020, we found a melanoma in a routine skin check, which meant that I needed to stop taking Remicade. I was switched to Stelara (ustekinumab) and it worked well for about 18 months. I then went into a major Crohn’s flare in early 2022, which couldn’t be controlled, and resulted in me getting a temporary loop ileostomy at the end of that year.
Waking up from that operation, even though I was in pain, was the best feeling in my life. I knew that my ileostomy was the best decision I had ever made. I’m planning on making it permanent later this year, because it can only improve my quality of life more.
Over the years, I have worked to raise awareness and advocate for people with IBD. I have worked on multiple projects, volunteered, and have spoken at events.
For me, navigating the world with an ileostomy is much easier than it was when I was constantly searching for restrooms, and using the bathroom 20-30 times a day. While I still have some symptoms, my life is so much better with my ileostomy, and it will only continue to improve.