Creating a brighter world
Sarah Starkey advocates for body positivity while leading by example
The beginning
In 1998 at the age of 13 I was diagnosed with ulcerative colitis. This was a very difficult time in my life as I was trying to navigate puberty, my first year of high school, a diagnosis of an incurable disease and how to record songs off the radio. Life sure was challenging for a while.
I remember receiving my diagnosis and feeling a sense of relief, as I finally knew what was wrong with my body. My teenage years were hard at times. I had students at my school not knowing why I looked different (effects from steroids) or why I took so many days off school. I just focused on me, my schooling and what I had to do to get through each flare. Most girls my age were worried about their hair, boys and what to do on the weekends.
During high school I had multiple admissions into hospital to try and place my disease into remission. A memorable admission for me was when I was just about to turn 15. I had an experience with a not so nice nurse who commented on my weight from steroids. From this moment on I told myself I would be a nurse – and a nice one, who would always be the best advocate for her patients. Fast-forward 21 years, I am a palliative care nurse consultant working in the largest palliative care service in South Australia. I love being a nurse. It is one of my true passions in life.
Reflecting on my early years in my diagnosis, I did try and make the most of my good days.
I loved to play sport and catch up with friends. However, I do I feel that I missed out on some of the teenage and early20s experiences like my other friends. You know, the nights out dancing with the girls or gap year holidays. I was always in a state of where is the nearest toilet? and wondering when my next stomach pain would come.
I sometimes look back on my life and seriously can’t believe what I have been through. People often think IBD is just a disease where you go to the toilet more than 20 times per day and have to eat certain foods, but it is honestly so much more than that. From this disease I was diagnosed with pyoderma gangrenosum (on my ankle), where I spent four weeks in hospital and four months not being able to walk. I had multiple operations, a split skin graft and many hours of rehabilitation to get mobile and regain my strength. I was a graduate nurse during this illness period and it really gave me a different perspective on being a patient and a nurse. It was an invaluable lesson and as you can see, I always take a positive from a negative.
I was incredibly lucky growing up to have such supportive parents, siblings, family and friends.
I remember my parents saying to me,
“This is what you have been diagnosed with, let’s move on and deal with it.” I truly have applied this to many other situations in my life. I also passed this message onto my little sister Georgia who was diagnosed with UC a few years ago. I remember saying to her, “You got this girl, this is what you’re dealing with and you will get through it.”
I like to think that I have been a role model for her in helping her manage her disease and raise IBD awareness in her community.
Suzie
At the age of 24 my bowel completely stopped functioning. The poor old girl had given up. Strictures and adhesions had gotten the better of me after living with IBD for 11 years.
On 16 September 2009, I met the love of my life: Suzie, my ileostomy. My husband Tom laughs every time I say that. The original plan was to have J-Pouch surgery, however after complications during surgery I had a total colectomy with an end ileostomy. I had a complete proctectomy in March of 2010 after having precancerous cells in my rectum. Recovery came with its challenges, but it was all worth it and I pride myself on being tough.
After my bowel was removed and tested, my diagnosis changed to Crohn’s disease, or what they call indeterminate Crohn’s and colitis. To me it honestly didn’t matter, I know my treatment wouldn’t have changed and the outcome for me was the best outcome.
Suzie is named after my stoma nurse Susan. I chose to name my stoma to help people feel more comfortable seeing my life change and to make an uncomfortable topic (for some) easier to manage and talk about. Each year Suzie and I celebrate our stomaversary with cake and balloons surrounded by our nearest and dearest.
When Suzie was born, I finally got the life I deserved. I have travelled the world, I have completed post graduate studies, I had an amazing wedding, I exercise, I have partied to my heart’s content. You name it, I have done it.
I often get asked if you could have a reversal of your stoma, would you? For me, I finally have control over my life. I have control over what I can and can’t eat without getting sick, I have control over when I need to go to the bathroom, I can travel freely – there is honestly so much more that I can do now living with a stoma.
Despite having my bowel removed and being in remission from my disease, I am still reminded every single day of my illness. I do experience fatigue; I have other health issues such as arthritis which is linked with my Crohn’s disease. I will forever be cautious about my health.
Unfortunately, I am currently experiencing fertility issues due to scar tissue and adhesions from previous surgeries. Pelvic surgery can often cause blocked fallopian tubes. My husband and I knew this process was going to be difficult and had prepared ourselves. We have been undergoing IVF treatment since February 2021. We were grateful to experience pregnancy after an embryo transfer in June 2021, however we miscarried at seven weeks. There isn’t a day that goes by that we don’t think about our baby. I have shared our journey by recording a podcast. Writing a poem has also helped us with the grieving process. You can find my open poem on my Instagram account (@saarrzzy).
Empowerment and awareness
I am a huge advocate for body positivity, empowering and inspiring others in their own journeys, whether that be IBD, IVF or miscarriage awareness.
Being diagnosed in the late 1990s, I found that there was very little accessible information and support was limited, so as a teenager I navigated my own path. I really must thank my beautiful husband for truly empowering me to show Suzie to the world. I was always able to do this with friends and people I had recently met, but I never felt comfortable sharing her on a larger scale.
I have since been able to help so many people globally through my social media accounts. Including founding a Facebook support group called “Trust your gut. IBD Warriors of South Australia”.
I established the group after this year’s World IBD Day, where I had arranged a group of fellow IBD warriors to head to Adelaide Oval, where the stadium had been lit up purple. It got me thinking about starting up my own support group that wasn’t so clinical, and one aimed at the younger (and young at heart) generation. It’s time for me to give people the support that I wish I had all those years ago. I wanted to give a voice to those who may not have the courage or support behind them. We now have close to 50 members and have regular get togethers. I am proud of what this group has achieved.
This year I participated in the Live Fearless Challenge with my younger sister Georgia. We are two of four girls in the Caruso clan and we are otherwise known as the bookends in our family. I am the eldest and she is the youngest. Our original team name was Caruso Crohnie’s, then my fellow ostomate and friend Justan Singh asked to join. We then became Caruso Crohnie’s and the Almighty Justan. Our team quickly grew to five members, with people joining from different states in Australia. The more the merrier we thought, and since we all had a common goal in raising awareness and fundraising, communication in our team was easy. We all have a great connection now and have built wonderful friendships from this challenge.
IBD has taught me to be grateful for every day. The advice I always offer to people newly diagnosed with IBD is to surround yourself with the right people, listen to your body, be kind to yourself, take one day at a time, have fun on the good days and rest on the down days!
Because of this disease I am a stronger person. Because of this disease I am a nurse. Because of this disease I have been fortunate to help sufferers not only locally but all over the world by sharing my journey, offering my support and empowering people to be comfortable in their own skin. Because of this disease I have Suzie. Suzie gave me the life I deserve and reminds me every day how strong and brave I am.
