One step forward, two steps back: Liam’s story
It all began in 2011 when I was just 15 years old, in Year 10. I started experiencing symptoms that were hard to talk about and even harder for people to understand. I had two perianal abscesses, causing immense pain in my bottom. I went to the emergency department at the Women’s and Children’s Hospital in Adelaide, where the doctor prescribed antibiotics, suspecting an abscess. Little did we know that the abscesses were the size of golf balls. Frequent trips back and forth to the hospital followed as my symptoms persisted. I was prescribed different antibiotics during these visits and had various scans including an MRI to determine the extent of the abscesses. I can remember my Mum and I feeling relieved on one of these trips when I was given new medication. I thought, “this is it now, this time it will work.” But I deteriorated again. It felt like progress followed by setback after setback. It really was one step forward, two steps back. Eventually, after having the abscesses drained, I was discharged with follow-up appointments with both my gastro doctor and my surgeon.
Unfortunately, my journey was far from over. I returned to the emergency room with complications. A skin tag had developed and needed to be removed. This marked the beginning of several months of constant setbacks. I had to constantly clean the site, taking saltwater baths and showers and using sanitary pads to keep the area clean. Managing this at 15 years old was quite challenging. As time went on, my symptoms worsened, leading to an endoscopy and colonoscopy that revealed I had Crohn’s disease. A couple of years later I required two Seton drains to help the abscesses drain. It felt like they were never going to heal.
The rollercoaster continued as I was put on immune suppression medication, Azathioprine, but it didn’t seem to have any effect. I developed welts all over my legs, and my body felt like it was rejecting me. My parents were insistent that we return to emergency, but I was completely over the whole routine of long waits, often seated sideways because my backside was so painful. This was followed by the repetition of explaining my history of symptoms, previous meds I’d taken and what my current situation was. I flatly refused to go. Two days later I was sweating, had a stiff neck, multiple lumps on my legs and was shaking uncontrollably. My Mum was concerned I was having a reaction to the immunosuppressant medication I had just started taking and my parents pleaded with me to come back to the Emergency Department. I remember my Dad driving right up to the doors and my Mum supporting me into the ED as I was having difficulty walking.
Emergency staff hinted at the lumps being a skin infection and we had to be really clear with my medical history over the past few months. we reinforced that we believed it was related to Crohn’s disease or the Crohn’s medication. I spent the next week in the hospital recovering, where the Gastro doctors immediately identified that the red lumps were Erythema Nodosum, skin inflammation caused by the disease. I had deteriorated because the Azathioprine had not yet had time to take effect. I was placed on Prednisolone in order to get the disease under control. I experienced weight gain and puffy cheeks for months, but my Crohn’s symptoms were slowly improving.
The trips through Emergency continued as I experienced flare ups, and eventually I was put on Infliximab infusions every 8 weeks. I became quite responsible with managing my medication through these early stages, and as I got older I could attend my infusion treatments on my own. At 16, I would collect my medical file from the appropriate department in the hospital before heading up to the Dialysis Day Unit where my treatment was administered. It would take a few hours to administer so Mum would return to collect me when she finished work. I think taking on this responsibility also helped me to transition to an adult hospital when I turned 18. I’ve learnt to track my health and note any changes that I experienced. This helps me to be prepared for my Gastroenterologist appointments, to report any changes I’ve experienced and to ask any questions.
Throughout my journey, I have consistently embraced resilience, refusing to let the disease define who I am. While it took me six years to complete my teaching degree instead of the typical four, I prioritised my health and understood that it would take as long as necessary. I remained steadfast in my determination not to let it dampen my spirit, always driven by an unwavering passion. Opening up about my struggles and being vulnerable, especially in the workplace, has been one of the hardest things for me to do. As a Year four teacher, I play an important role in shaping young children’s minds. I have made it my mission to bring awareness about being kind to each other, as we never know the battles others face every day. The students have shown tremendous support, even wanting to donate to the cause and learn more about the disease. I also work with another teacher who has Crohn’s disease, creating a supportive environment for students to thrive.
Now at 27 years old, I am still taking Azathioprine, an oral medication, and now self-administer 8-weekly injections of a monoclonal antibody called Stelara. I consider myself fortunate compared to others who have undergone bowel removal or extensive surgeries. In 2018, I had a terrifying scare that almost resulted in such procedures. While I still experience flares occasionally, they come and go and can last for varying durations. Nevertheless, I strive to live my life as normally as possible. I love running and staying active, which is why I took on the challenge of running five kilometres every day to raise money for Crohn’s Disease awareness. Initially aiming for $500, I have managed to surpass that and currently sit at $1,100. I have been left speechless with the overwhelming support from family, friends, colleagues and my students. I am grateful for all my support networks and like-minded individuals who have guided me through the tough times, and the bum jokes from my brothers never fail to bring a smile to my face.
In recent times, I have undergone two colonoscopies and had one perianal abscess drained. Throughout my journey, I have received tremendous support from my entire family, particularly my mother, Kellie, who has been my number one supporter through every hurdle, setback, and triumph. I am also grateful for the tireless work of my Gastroenterologists past and present, Dr. Schuman and Dr. Moore, as well as Rachael, an IBD nurse.
At the time of writing, I have the privilege of teaching the best Year four class in Adelaide. One of the ways I maintain my well-being and stress is by fostering connections through playing football (soccer) and opening myself up to being vulnerable at times. I deeply appreciate this journey that has moulded me into a person who values strength, resilience, and compassion. I am hopeful that sharing this will inspire other individuals going through similar battles. Remember, you are not alone. Progress may not always come easily, but with unwavering determination, it’s crucial to keep forging ahead, regardless of whether you take small steps or giant leaps forward.
*From 2022