My Journey with IBD &
the Formation of the Gutsy Group
Diagnosed with Crohn’s disease at the age of 16, I have had many years to get used to living with what can be an extremely debilitating disease. My journey with Crohn’s has been a varied one and one that has led me down the path of support and fundraising in the hope that one day we can find a cure for Inflammatory Bowel Disease.
I know what it is like to grow up as a teenager with a medical condition that requires many hospitalisations and the taking of many and often experimental medications; to live with a condition that is invisible to others and yet can have such an impact on health and the ability to participate in daily activities. The difficulty of studying and then working when all you want to do is crawl under the covers for a while is also familiar. I did not travel in my youth as there was no guarantee that I would not become sick overseas and stranded in a country far from home. I surrounded myself with family and good friends who knew my story and were supportive of my condition. I was honest with my work colleagues who were then more understanding on those days when I did not function at my best. I joined a theatre group and a local gym so that I could keep busy even when feeling miserable.
After many years of poor health and a couple of minor surgeries, I had a total colectomy at the age of 29 just three months after our wedding. Another surgery later and I was drug free and back-packing overseas with my husband and permanent ileostomy. I was put in touch with Young Ostomates United, Inc who provided me with so much support and information exactly when I needed it most. After a few years, I joined the committee and helped organise functions and update their patient resources. It was so rewarding to give back to a group that had given me so much support and to know that I was helping others. The camaraderie of the YOU committee was also very rewarding and something I treasure to this day.
The drastic surgery had improved my health, so despite always saying I did not want children, we decided to give it a go. While I was still pregnant I was asked by my gastroenterologist to help start up a fundraising group to raise funds for research into a cure for Crohn’s Disease and ulcerative colitis. The Gutsy Group, Inc was born just before our son. Almost three years later we had another baby boy. Both were born via caesarean and both were healthy babies. Life was good. I went back to work and for a while juggled both YOU and Gutsy Group commitments. Eventually, as The Gutsy Group grew and we held two functions a year, I resigned from YOU but to this day I stay connected.
The Gutsy Group has raised close to $500,000 solely for research into funding a cure for Crohn’s Disease and ulcerative colitis. Monies are raised largely by our fundraising events but also by donors who contribute throughout the year. We now have an annual grants program to which researchers apply and one exceptional project is chosen and awarded a sum of money annually to continue research into IBD. Some of the studies we have supported have received international recognition.
I remain committed to The Gutsy Group and organisations such as YOU because IBD has not finished with me yet. My mother was diagnosed with late onset Crohn’s in her late 60’s. Then in 2010, our oldest son was diagnosed with ulcerative colitis at the age of 10. He had a colectomy almost immediately which was then transformed into a j-pouch. He had become so sick so quickly that there was no other option. It was a sad time, but five years later he is a strapping 16 year old who play rugby and rows for school. He is a testament to a positive attitude and tenacity.
A few months ago, a bout of food poisoning prompted me to have a review. The Crohn’s is back. I need to commence medications again. Not exactly what I had planned for this stage of my life, but it is what it is. The fight against IBD continues and will be won.
To donate to The Gutsy Group go to www.thegutsygroup.com.au.
To find support after stoma surgery go to www.youinc.org.au.
Reprinted with kind permission from "Ostomy AUSTRALIA" (Volume 24; Number 3 - December 2015)