A large and loving family has helped Susan Maye endure the lows of IBD. Here, Susan and sister Fionnuala share their experiences of living with IBD.
By Susan Maye
I GREW up in country NSW, one of seven active children running amok in the countryside and dreaming of traveling the world. Once I outgrew my hometown I moved to Brisbane to study journalism.
I was 21 when I started getting ongoing bouts of diarrhea and stomach pains. It took more than 12 months, repeated doctor’s visits, and the loss of 12kg before I was referred to a specialist. His first words after the examination were: “You have severe ulcerative colitis. I have seen people your age die from this.” Already extremely sick and scared about the amount of blood I was losing, this was not what I needed to hear. He assumed I hadn’t taken my health seriously.
I had planned on travelling the world as a foreign correspondent – getting sick in my final year was not part of this plan and it impacted every area of my life. Although I managed to finish my degree, I wasn’t able to pursue fulltime work or postgraduate study. The financial and emotional stress that came with an unpredictable illness and the side effects of the medication took their toll on me. My friends also found it difficult to understand as I often looked well but wasn’t able to maintain my social life.
With my family scattered across the globe and my parents home raising my younger siblings, I relied on my aunt and uncle in Brisbane to “rescue” me from my share house repeatedly over the years, taking me to hospital and nursing me back to health. My parents visited and supported me when they could, but moving home wasn’t an option as I needed to be close to specialist attention.
Amidst all the uncertainty, I managed to get on with a semblance of life and got to know where all the toilets in Brisbane were. This didn’t prevent accidents over the years, but I learnt to take them in my stride.
Despite treatment, my IBD never went into remission and at age 24, after months of deterioration, I was hospitalised again. I don’t recall much from that time. My first clear memory is of waking up in intensive care with an ileostomy and a new diagnosis of indeterminate Crohn’s-colitis. I was surprised to see my brother, who was living in the US at the time, and my sister from Sydney, not realising they had been told I might only have 24 hours to live – I was too weak to process anything at that point. Whilst it took me no time at all to manage my ileostomy, it took a lot longer to accept it – particularly with ongoing complications.
I slowly regained my health and a few years later was medication free and well enough to travel to Singapore, Malaysia and Cambodia. After working in Brisbane for another few years, I moved to London to work. I had a great time over there and backpacked through Europe, North Africa and the Middle East, managing any complications or “accidents” with a grace and efficiency I couldn’t muster in the early days. I now call Melbourne home.
I’ve had a number of surgeries over the years, including two in the past 18 months for fistulating Crohn’s. It’s likely I will need drug therapy again in a bid to avoid major reconstructive surgery. This disease stole many years and there were times I felt great despair. But it has taught me acceptance and a resilience I didn’t know I had.
None of it has stopped me trekking through Borneo last year, getting my SCUBA license or planning my next adventure. Despite everything, I’m grateful I am now able to live an active life. I found the loss of my physicality during the illness really difficult.
After my recent surgeries I was looking for a way to take some control back, so I started training for Run Melbourne. On the day, I not only managed to make the distance, but also raised $2500 for CCA. In solidarity, my sisters, Thomasine and Fionnuala, ran the Sydney City2Surf this year, also fundraising for CCA. My family members are my closest friends. We have been through a lot together.
Hearing other’s stories and experiencing the lack of understanding that surrounds IBD – let’s face it, it isn’t standard dinner party conversation – makes raising awareness and educating the public and health professionals really important to me.
Fionnuala Maye’s Story
IF you ask a little girl what she wants to be when she grows up she may tell you she wants to be a journalist, or an air hostess, or a scientist or doctor. When I was a little girl I wanted to be my big sister Susan. She had beautiful, long blonde hair, she was athletic, intelligent, outspoken and always surrounded by friends doing fun things.
She moved to Brisbane to study journalism at university. Coming from a large family, there was no way our parents could help her financially so she worked full-time hours at Kmart while studying a full-time. She also managed to continue her outgoing social life. Then she started getting sick. Upset tummies mostly. Tummy bug after tummy bug. Or so we thought. After months of vomiting, diarrhoea, weight loss, tests and doctor’s appointments, a specialist diagnosed ulcerative colitis.
While all this was going on in Brisbane, I was carrying on my selfish teenage life in the northern NSW town we all grew up in. I remember mum telling us what the diagnosis was and went and looked in the encyclopedia at school to find out what it meant. “An inflammation of the bowel” didn’t sound that serious. When Susan came home for Christmas that year looking like a concentration camp survivor, unable to eat anything but potato, rice and a dash of soy milk, the reality of the illness’ seriousness started to hit me.
While coming to terms with her illness and trying to manage it with diet, Susan was still studying journalism and managed to graduate with the university medal for being first in her course. Unfortunately, the medication and managed diet was not successful in combating the disease.
After years of illness, Susan was hospitalised with severe bleeding and dehydration. The doctors carried out an emergency colectomy. I’ll never forget the night our dad, a conservative university lecturer not known for great shows of emotion, arrived home from Brisbane. He put his hand on my shoulder while gazing vacantly off to my left and said: “I think you’d better come to Brisbane this weekend. It might be time to say goodbye to Susan.” Our brother flew back from Philadelphia where he was working, and our oldest sister flew up from Sydney. For the first time since the older kids had started moving away for university, we were all together again – and it wasn’t for Christmas.
I remember that time as so surreal. After the operation Susan contracted an infection and pneumonia and ended up in a coma in intensive care. She also had a new diagnosis of Crohn’s disease. I had never felt so scared or helpless in my life, but I knew that Susan was a fighter and I hoped and prayed that she would fight it. And fight it she did, and still continues to do so today.
It’s such a cliché but I am so immensely proud of my big sister. Not only has she dealt with her ileostomy and several subsequent surgeries with humour (it’s widely referred to as her “poo bag” in our family) and pride, but she has also got up and got on with life when she has had constant complications thrown at her. She hasn’t let her ileostomy stop her from travelling to places such as Syria and Jordan, she hasn’t let a fistula that won’t heal stop her from completing her PADI diving course and travelling to Borneo to scuba dive and climb the highest mountain in South East Asia. And she didn’t let it all stop her from training for and running the Run Melbourne event, raising $2500 for the Crohn’s & Colitis Australia Changing Lives Challenge. And all while still being her usual beautiful, sociable, outgoing self.
When I grow up I still want to be just like my big sister Susan.