Savvas Giannakakis’s Story

It took Savvas Giannakakis 10 years to come to terms with being diagnosed with IBD. Here he shares his experiences of living with Crohn’s disease as a young male and its impact on his personal and professional life.

I WAS diagnosed in August 1997, at the age of 21, with large bowel disease. Like many sufferers, I was probably ill for a long period of time prior to this. Ignorance, avoidance, denial and a bullet-proof mentality prevented me from seeking the medical help I required, and prolonged and hindered the diagnosis process. I had just completed university and was working as a physiotherapist at a Sydney hospital. I was constantly tired and making trips to the bathroom – 25 times a day was not unusual.

Once diagnosed, I began the medical merry-go-round that most sufferers experience and was unwilling to accept that there is no cure. Medical management was aimed at inducing remission and controlling, but not eliminating, all the symptoms. I will not list all the treatments I tried but I did have some good success with newer medications such as infliximab and adalimumab. I felt it was important to play an active role in my treatment and would constantly ask my specialist what treatment combinations were available to give me the best possible quality of life.

While in remission I found I was trying to play catch up, both socially and professionally, to make up for the time lost while feeling ill. During times of a flare up, I know I was extremely difficult to live with and my girlfriend – now wife – showed the patience of a saint to put up with me. She encouraged me to continue to stay positive and to set achievable goals, while constantly listening to and respecting what my body was saying to me in times of a flare up.

In 2001, I joined the NSW Fire Brigade as a professional firefighter. I decided I wanted to be employed in a job that was physically very demanding to prove to myself, friends and family that Crohn’s disease does not prevent you from doing anything.

In 2006, my wife, Nichole, and I became parents of a beautiful baby boy. It was then that I began to seriously consider how to best manage my disease. The watershed moment came when my son was calling for me and I was unable to respond immediately as I was in pain due to a severe flare up. I booked in to see my colorectal surgeon that week and after some serious discussion and questioning, had a proctocolectomy and permanent ileostomy performed in April 2007. The recovery was hindered by two more surgeries as a result of a fistula.

I was honest with my employer from recruitment onward. I liaised with the brigade medical officer and told them when and what surgery I was having, and my expected time off work. I also downloaded case studies of firefighters overseas who had the same procedure and returned to full duties and gave them to brigade medical staff. When I returned to work, fire brigade medical officers put me through a series of arduous tests to simulate the demands of firefighting. I was given clearance to return to work on full duties just four months after the initial operation.

On return to work I felt it was important to tell the crew I worked with about the procedure. I had to assure them that I was fit and capable of performing the arduous work we can be called upon to do. By this time I had come to terms with my ileostomy and the good health it had given me. Firefighters are a practical bunch and their inital response was surprise, followed by questions abut how the ileostomy worked, what it looked like, and whether it affected my diet. There were a few negative comments, which initially upset me and made me defensive, but I put them down to ignorance and a lack of understanding. I developed a stock answer for these comments, suggesting that although we are not all created equally, it is how we face and attempt to overcome adversity that defines us.

Exactly one year after my initial surgery, my wife and I welcomed our second son into the world. I now recognise how much time I missed with my first son as a result of feeling ill.

Crohn’s disease has challenged me and made me examine my relationships unlike any other experience I have had. And while I wish I didn’t have it, I have come to appreciate the knowledge the illness has given me: to make the most of each day and to strive and be the best you can be.

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