When I say I can’t do it anymore, I’m actually at my limit.
Navigating Flares • mOI member
I have been living with inflammatory bowel disease for around two years. My diagnosis is now undetermined IBD. I have had a total colectomy and live with an ileostomy, and I still fight flares and receive treatment.
My journey started with my twin brother
My journey started with my twin brother Joe, who was rushed to hospital with suspected food poisoning. Four weeks later, his bowel had been entirely removed and he was diagnosed with ulcerative colitis, something he had never heard of. He was given hours to live, and that ileostomy surgery saved his life.
The day my brother got home from hospital, I started bleeding from my rectum. I panicked and thought that if I forgot about it, it would go away. I couldn’t put my family through the fear and trauma of having this happen to me too.
Six months later, I collapsed from blood loss and was admitted to hospital for the first time, where I was also diagnosed with ulcerative colitis.
Eventually, my body gave up
After a year of treatment and living in hospitals, my body gave up. I went into sepsis and developed toxic megacolon, which ultimately resulted in my entire large bowel being removed and me getting an ileostomy.
I officially twin with my twin!
Because my bowel was so damaged, unfortunately we were not able to identify my specific IBD. My diagnosis changed from ulcerative colitis to undetermined IBD. I still fight flares and get treatment now.
I was lucky to be believed
I was lucky in my diagnosis. As I had such a strong family history of the disease through my twin brother, the doctors believed me and fought for my diagnosis straight away, which I know isn’t the case for most people.
The hardest part was the embarrassment
The initial embarrassment was the hardest part. Soiling myself on a night out. Bleeding through my clothes. Not being able to talk to friends or colleagues about it.
Being open changed things for me
Social media. Being open. Being able to create confidence and having that confidence to know when it’s time to get help. Those things have made the biggest difference to how I manage my health.
How mOI helps me
I always struggle seeing new doctors. The first question is always, “Are you on steroids?” I say yes, and they ask which ones I’ve tried, and I never knew. mOI lets me log exact medications and timelines, which has made my doctors’ lives a lot easier and made treatment quicker.
What I wish doctors understood
That I am strong. I can handle pain. I’ve hidden pain for years. So when I say I can’t do it anymore, I’m actually at my limit.
What I would say to someone going through the same thing
You are your best advocate.
Instagram: @alex.lyonss • TikTok: @alex.lyonss
For Alex, mOI keeps medication history, treatment timelines and other health information in one place, so she can share a clearer record when she sees a new doctor.