Full Circle: Emma’s Story
My story is unique, to say the least.
I was diagnosed with Crohn’s disease at just nine years old after experiencing daily abdominal pain. At that age, I couldn’t comprehend what living with a chronic illness meant. I only knew that my stomach hurt. Little did I know that Crohn’s would go on to shape almost every chapter of my life.
My childhood became a blur of hospital appointments, colonoscopies, MRIs, blood tests, medications and constant fatigue. I tried different diets, including Exclusive Enteral Nutrition, and numerous medications, but my disease continued to progress. Eventually, I was treated with biologics, but nothing seemed to provide lasting relief.
By 18, my quality of life had deteriorated so significantly that I underwent my first major surgery: a hemicolectomy with a temporary ileostomy. I was terrified of having a stoma, but meeting my ostomy nurse beforehand and having her explain exactly what to expect made the unknown feel less frightening.
I even named my stoma Susan McGurgle, or “Susie”, because of the noises she made. I created an Instagram account, @stoma_susie, which helped me connect with and immerse myself in the ostomy community.
At the time, I desperately wanted life to return to “normal”, so four months later I chose to have my stoma reversed. Unfortunately, my Crohn’s had other plans.
More Challenges Ahead
My disease returned aggressively in the perianal area. I developed fistulas, abscesses and strictures, requiring repeated surgeries, dilatations and setons. My life revolved around pain, wounds and simply trying to get through each day.
Eventually, I chose to have another ileostomy and later, in 2023, underwent a total colectomy.
Through it all, I became a Registered Nurse, married my best friend Reuben, travelled, bought a home and became a mum through IVF to our beautiful boys, Remy and Brooks.
Then, just weeks after Brooks was born, everything changed.
I developed a severe pelvic infection that progressed to sepsis. On Christmas night in 2024, I underwent emergency surgery to remove my rectum and clean out the infection. I spent weeks in hospital, including time in ICU, followed by months of home nursing, antibiotics, drains and further procedures.
My family and friends carried me through a period I honestly wasn’t sure I would ever leave. But somehow, I kept putting one foot in front of the other.
Finding Purpose
That experience changed me. I became incredibly grateful for the ordinary things I had once taken for granted, and I realised just how much a compassionate healthcare professional can mean to someone living with the ongoing challenges of IBD.
Throughout my own journey, I was fortunate to have nurses and doctors who advocated for me, listened to me and made me feel seen. My IBD nurse, Jill, was one of those people. Knowing I had someone in my corner made an enormous difference.
When I returned to work after maternity leave, I started questioning what I wanted from nursing. I knew I wanted to make a difference. I just wasn’t sure what that looked like anymore.
Then I applied for an IBD Registered Nurse position at the same hospital where I had spent so much of my life as a patient.
I am now eight months into that role, and I absolutely love it.
Every day, I get to support people living with Crohn’s disease and ulcerative colitis. I understand what it feels like to be the scared patient, the exhausted patient, and the patient who just wants someone to listen.
Now I get to be that person as part of someone else’s healthcare team.
Looking Forward
I’ve been given more curveballs than I ever imagined. Crohn’s disease has changed my body, my career, my perspective and my life.
Crohn’s may always be part of my story, but it will never be the end of it.