In my late 20s, I started having stomach pains. At the time, I didn’t think much of it. After an endoscopy, doctors discovered significant ulceration in my stomach and intestines due to high acid levels. Still, I carried on, not expecting what would come next.
At 31, everything changed. Urgent bathroom visits, severe abdominal pain and eventually, frequent bloody diarrhoea took over my life. I was referred for a colonoscopy which is where they diagnosed me with Crohn’s Disease. I remember laughing at the name, not understanding the gravity of the diagnosis.
They gave me medications, but nothing seemed to work. Steroids became the only thing that helped, though the bleeding and ambulance trips to the hospital were terrifying. It wasn’t just the pain and blood loss that scared me, but the guilt and fear of how this was affecting my son. He repeatedly had to call the ambulance and witness my suffering. One night, when I lost so much blood that it affected my breathing, my son had to help me. That was my breaking point.
RELATED: ‘I was diagnosed with Crohn’s, here’s how my stoma saved my life’
I desperately begged the doctors to do something, which is when they decided to remove part of my bowel. I was scared but trusted that the doctors knew best. What I didn’t do was educate myself more about the surgery, instead I blindly trusted the process.
On the day of the operation, a nurse asked me where I wanted my stoma. I had no idea what a stoma was, but before I knew it, I had to choose a spot on my stomach. After the surgery, I expected to recover in five days, as they’d told me. Instead, I got progressively sicker. My bowel had perforated because of the steroids, leading to peritonitis and sepsis. I was rushed into emergency surgery in the middle of the night, and my family was called to possibly say their goodbyes. I flatlined on the operating table but was brought back and placed in an induced coma on life support.
When I woke up, I had a stoma bag. I had no idea what a stoma was or that this bag, which I affectionately named “Barney”, would become a permanent part of my life. At first, I thought it would be temporary, but after further complications, they removed the rest of my large bowel. Barney and I became lifelong friends.
The recovery process was slow and gruelling. I spent months in the ICU as my body fought off the infections. My son, who was only 14 at the time, would visit me and light up the room, even though my parents had tried to shield him from the worst of it. I later realised how deeply this affected him and how much he still carries that weight today. If I had died, I don’t know if he would have forgiven my parents for not letting him say goodbye.
Learning to manage my stoma was tough. The nurse was on leave, so I had to figure things out on my own through trial and error. Over time, I adjusted to life with Barney. I never hated the bag—it had saved my life and allowed me to continue being there for my son.
As I started to recover, my body healed, and I got used to Barney. However, even the small remnants of my bowel that remained gave me trouble. I was begging the doctors to remove it too. After much debate, they finally agreed. I knew this meant Barney was now permanent, but I was accepted that.
The final surgery was particularly hard for me mentally. I remember feeling like it might be the end. However, after eight hours of surgery, the amazing team of surgeons at the Royal Brisbane and Women’s Hospital succeeded, allowing me to begin my road to recovery.
Throughout this time, my arthritis worsened. Some days, it was hard to get out of bed. I was eventually diagnosed with psoriatic arthritis and placed on anti-inflammatory meds and painkillers. Starting infliximab infusions made a huge difference. The pain that had dominated my life for years finally started to fade. Transitioning off pain medications wasn’t easy, but the infusions worked to allow me to slowly become pain-free.
Ironically, it was the absence of physical pain that brought on a wave of emotional pain. For years, I had suppressed everything, just trying to survive. When the physical pain lifted, the emotional toll hit me hard, and I fell into a deep depression. Even after my traumatic surgeries, I had told the hospital psychologist that I was coping. I’d have my moments of feeling sorry for myself, but then I’d pull myself out of the darkness. But after years of struggle, I couldn’t ignore the emotional weight anymore. I went on antidepressants for a few months to help.
Though Crohn’s has taken so much from me, it has also given me perspective and a new outlook on life. It’s made me stronger and less likely to take things for granted. My experience has even opened doors for me. I’ve walked the Great Wall of China and travelled the world for work, something I never thought I’d do.
Barney is 18 years old now, and I jokingly tell people he’s finally of legal drinking age. Despite the occasional embarrassing situation, he saved my life, and I wouldn’t be here without him. Today, I live in Brisbane with my fur baby, not too far from my son. My mother now has dementia, but she’s cared for lovingly by my father. I’m grateful for my life, my job, my travels, and my friends, and I remain passionate about raising awareness for Crohn’s Disease and supporting others with IBD.
If you suspect you might be suffering from similar symptoms I have been through, a great resource to learn more about IBD is through visiting Crohn’s & Colitis Australia.
How common is Crohn's disease?
Crohn’s disease is relatively common in Australia, with the country having one of the highest rates of inflammatory bowel disease in the world. It’s estimated that around 1 in 200 Australians are affected by IBD, with Crohn’s disease being one of the two primary forms (the other being ulcerative colitis).
The disease typically presents in young adults, often between the ages of 15 and 30, and can affect individuals of any age. Environmental factors, including diet, lifestyle, and genetics, are believed to contribute to the higher rates seen in Australia. Despite the rising prevalence, advances in medical treatment and management have improved the quality of life for many people living with the condition.
Why is Crohn's disease more common in Australia?
Environmental factors including diet, lifestyle and genetics are believed to contribute to the higher rates seen in Australia. But despite the rising prevalence, advances in medical treatment and management have improved the quality of life for many people living with the condition.
What is the life expectancy of someone with Crohn's disease?
The life expectancy of someone with Crohn’s disease is usually close to that of the general population, especially when the disease is well-managed. With advances in treatment, including medications like biologics and immunosuppressants, many people with Crohn’s disease are able to live long and healthy lives.
While Crohn’s disease itself does not typically shorten life expectancy, complications or severe, untreated disease can reduce lifespan.
Tracey Murrin is currently taking part in the Live Fearless Challenge this month. The challenge was created in 2017 to encourage people living with IBD to set healthy routines for their mental and physical wellbeing. This year’s month-long challenge provides an opportunity to enhance health and wellbeing, raise awareness, and support those affected by IBD. As Crohn’s and Colitis Australia’s primary fundraising event, the aim is to engage over 600 participants and raise in excess of $300,000 to support essential services and initiatives for the nearly 100,000 Australians living with IBD. Register as an individual or team at www.livefearlesschallenge.com.au.
