Another perspective on living with IBD

31 Aug 2021

Tracey Murrin was diagnosed with Crohn’s disease in 2005. 12 months later after a very aggressive year of a lot of hospital visits she had most of her large bowel removed and a permanent ileostomy. 

Tracey is very passionate about raising awareness and helping others with IBD. She has walked the Great Wall of China with an amazing group of people to fundraise and raise IBD awareness, was a finalist in the Great Comeback Awards 2017, and walked in the 2018 Gold Coast Commonwealth Games Queens Baton Relay for Crohn's & Colitis Australia awareness. The most personal event though, was her son’s concert where he sang the song about their journey called F.I.B.D.  

At first, I did not even know what was happening to me or how to deal with it myself, so as much as it pains me to admit it, I didn’t even think about what my son, Taylor, was going through.

I think that initially, when you are in such pain and so lost trying to understand what is happening to you, it is hard to focus on how those around you are feeling.

My Crohn’s became aggressive very quickly. When my flares got worse and Taylor had to start calling the ambulance and watch me collapse from pain and loss of blood, the effects on him became more than I could handle seeing him go through. I talked with the surgeon as this was becoming a regular event and told them I could not live with putting my life in my son’s hands. It was not fair on him. As a result, the decision was made to take out part of my bowel. That was my first surgery.

Seeing his face every time I left for surgery was pure hell. I cannot even think of it without crying to this day. That look on his face – trying to appear strong for my sake but holding back tears and fear. I hated my body and this disease for putting him through that. We are extremely close and the thought of leaving him alone terrified me. I did develop an amazing talent for acting. I tried so hard to always smile or make a joke, to wear a mask of bravery. But as he got older, he always knew if I was in pain or just faking being okay.

Taylor always tried to be the man of the house and had a strong protective instinct towards me even as a little boy before I got sick. There were many times when the joint pain and arthritis due to IBD was so bad that I couldn’t even get out of bed. That was very frustrating for me, but Taylor would always make sure I was okay and looked after me. He even offered to learn how to change my bag should I be physically unable to – now that’s love.

The distressing situation made him grow up very fast and he had to take on a lot more than he should have. If I can single out one positive outcome, it’s that he is an amazingly compassionate and empathetic person and has a huge heart. Our journey together has brought us closer than I thought possible.

When I had my second surgery, my bowel was perforated and I had E. coli, peritonitis and sepsis and I was put into an induced coma and on life support. Taylor’s face is the first thing I remember seeing when I woke up. He was only 14 and he looked so relieved, but so scared. It is funny what you remember but I recall when I finally got home from hospital, Taylor cut his finger (not badly) and he came to me for sympathy. I recall feeling no compassion for him.

I was still so weak and trying to adapt to life with a colostomy bag. It was at that point that I did some serious soul-searching.It is so easy to focus on our own pain and frustration that we forget that everyone is going through their own issues and emotions. That moment was an important life lesson for me. We can lose sight of how this illness effects the people who support us. They did not ask for this either.

I have always been more at ease looking after others than being looked after myself, and when I started to feel a little better, I looked into how I could help other people and spread awareness. I had personally never heard of Crohn’s and colitis and found that most people when I told them what I had, looked at me quite blankly. That is when I put my hand up for the CCA China Challenge.

I travelled to China with the most amazing group of people and we trekked along the Great Wall and raised money for IBD. I have had some other events that I have put together like Cow Poo Bingo and High Tea for IBD and I was a finalist in the Australia and New Zealand Great Comeback Awards. I have attended some seminars and spoken about what it is like to have a bag.

One of the most rewarding things that I have done to date is to mentor at the CCA Queensland Youth Camp. I was diagnosed at 35 and I have always thought that since it was challenging enough as an adult, how must young children feel going through this roller coaster!

I have met some amazing and inspirational young people and their beautiful families at these camps that have strongly impacted my life not only as a fellow IBD’er but as a human being. They are such strong and incredible kids who have been through so much at such a young age. But regardless of all my fundraising and awareness efforts, it was my beautiful son who did something so amazing that it became the most incredible gift I will ever receive.

For Mother’s Day a few years ago, Taylor wrote me a song called FIBD. I think I cried all day, listening to his own words really put into perspective what he had been through and how much he loves me.

It was to be a gift from my son to me but it was too good not to share. Taylor’s passion for his music and his amazing talent make me so very proud. Taylor is the light of my life and my best friend and I am so blessed to have such a wonderful son.

Crohn’s has taken a lot from me but as someone who chooses to always try and find the positives in life, it has taught me to be strong, to not sweat the small stuff and mostly it has taught me to count my blessings for having such an amazing family, such understanding friends and such an incredible son.