In January 2009 at age 21, I was busy preparing for my university exams, and working in my part time job. However I noticed that I wasn’t feeling quite like myself, always tired, no energy and constant dark circles under my eyes. I just thought I was maybe doing too much. However over the weeks that followed things began to get much worse. I noticed blood in the toilet every time I went, I couldn’t keep anything down (even the smell of food was making me vomit) and I had become so weak that I could barely brush my hair. My GP diagnosed haemorrhoids and prescribed anti-sickness medications and some cream. However when there was no sign of improvement my parents took me straight to A&E and after an urgent colonoscopy I was diagnosed with Ulcerative Colitis. The next week was spent in hospital hooked up to IV fluids and IV steroids. My condition somewhat improved and I was discharged home.
Things did get better for a while, and medication seemed to be keeping things at bay. However in October 2010 I began to flare and again I was admitted for IV treatment. Unfortunately I didn’t respond as well as expected and was becoming sicker by the day. I knew something had to be done… and fast. I couldn’t cope with the pain any longer and was fed up sitting on the toilet for hours at a time. My surgeon explained how sick I was and that surgery was the only option. So, on the 3rd November 2010, I had surgery to remove 4/5ths of my large intestine and form an ileostomy.
The support given by the stoma nurses, my family and friends, helped in the immediate post-operative period, but no-one could really prepare me for how my life was going to be with a stoma, nor could they tell me how I would adapt. I was scared, frightened, and my self-esteem was at rock bottom. I felt ugly and wondered how my boyfriend would ever find me attractive with a bag attached to me. Some days there were laughter some days there were tears. Either way I knew I had to accept that this was my new life. I will never forget a girl opposite me in my hospital bed who recently had the same surgery. She said “Do you think you’ll ever go back to work again?” As a 22 year old young woman, with plans and ambitions I was totally distraught. My life would never be the same again!!
However, I was discharged to recover at home and I can honestly say I adapted really well. I decided to name my stoma “Stammy the Stoma”. It took a while to learn how to change the bag, what to eat and what not to eat etc. but almost 5 years on I have become an expert in timing my poops and bag changes. I have done things I never thought was possible with “a bag”. I have visited places I would never imagine including Las Vegas and Mexico and have planned to visit New York in January 2016. I have been camping, went down water slides (holding my bag in case the impact took my bag off haha), been on a quad safari, boat trips, snorkelling in the sea and drove a jet ski. Also, my surgery and hospital experience inspired me to become and nurse and make a difference just like the nurses made a difference to me in my most vulnerable state. So in July 2015 after 3 years of study I finished my nursing degree and have just taken up post in my local hospital. In December I will graduate.
Finally, I don’t necessarily love having an ileostomy but I love that it saved my life and afforded me the opportunity to fulfil my dreams. My friends and family forget I even have a bag and no-one knows unless I tell them. I have more energy and my experience has made me love life even more and look forward to what the future holds.
So, to the girl opposite me in the hospital bed who made me believe my life was over. My life was most certainly not over, it has only just begun!
A new me
Weird as it sounds, I almost immediately felt as if all the badness was gone! Within a week I was home and 6 weeks later I was at work, gaining weight, taking less medication than I had in years, eating normally and feeling a sense of freedom I had forgotten was possible. I was so grateful to be feeling healthy again!
A few months after surgery, with the green light from my doctors, it was time to revive our dreams and embark on the trip of a life time, not working, just travelling and living life!
There was so much to organise for our 10-month holiday: stoma supplies, medication, doctors’ letters, insurance. We got it all sorted, and a few days before leaving, even managed to get engaged! A huge shock to me as Michael proposed after 17 years together. I said yes of course!!
At last the day arrived. Over 4 years since being diagnosed, 3 years later than originally anticipated, and just over 6 months since having major surgery – it was real! Holding my fiancé’s hand, I breathed a huge sigh and shed a few tears as we took off from Sydney.
Have Bag, Will Travel
After long-term reliance on family, friends and doctors for support, guidance and strength, there was some trepidation about leaving Australia, but having come so far, I knew we’d be okay.
For me, travelling with an ostomy really had no significant issues. In some ways it was a benefit! Pre-departure planning, arranging and carrying supplies, emptying and changing the bag in foreign places, eating different foods, organising blood tests, all took some patience and stamina, but was ultimately smooth sailing (or smooth pooping!).
Determined to raise awareness and reduce stigmas around IBD and ostomies, I joined the #GetYourBellyOut campaign and got my belly and bag out for photos all around the world; even on my wedding day!
I am so grateful to be at the stage I am now; to have adapted to being an ostomate easily and without issues. I try to acknowledge my thanks every day. I’m so blessed to have had this adventure – 10 months travelling through 3 continents and 17 countries, experiencing incredible things, people and places.
I hope my story helps and inspires other people who may be struggling with their ostomies and shows that there is life after a stoma: it has given me my life back, and enabled me to fulfil some lifelong dreams that for a long time I feared would never be possible.