Symptoms, diagnosis and letting go of dreams
Not long after my 30th birthday, the first symptoms appeared: blood in the toilet bowl! I thought I’d better see my GP. Some inner health plus, stool samples and antibiotics later with no improvement, it was off to a specialist. Little did I know how big a role this man would play in the next 4 years of my life!
After a colonoscopy and banding for suspected haemorrhoids, I was told that I had Crohn’s disease, a form of inflammatory bowel disease (IBD), and an illness which I knew nothing about. My doctors advised my Crohn’s was only mild and so my plans to live and work in London with my partner Michael could probably go ahead. Gradually though, my symptoms worsened. I started having sudden urges to go to the toilet, the blood and mucus increased, and I was losing weight rapidly. I didn’t want to let go of our dream and let the disease win but, on the date of our intended departure, instead of sitting excitedly on a plane awaiting a new life in London, I was in hospital having a colonoscopy. Days later I was admitted with the worst flare up I had experienced.
Years of pain and struggle
I experienced repeated flares and never went into “remission”. It was a battle to get out of bed, leave the house and do the everyday things we take for granted. The symptoms had taken over and become debilitating.
Complications and side effects were rampant: fistulas, abscesses, osteopaenia, achy joints, oral thrush and shingles due to my suppressed immune system, and after my first hospitalisation, a DVT resulting in a pulmonary embolism which could very easily have killed me.
I tried Chinese herbs, acupuncture, several diets and every medication available but any initial improvement was always short lived. I yo-yoed between 1-50mg of Prednisone and had all the associated, fun side effects. Eventually even the steroids stopped helping. Worst were the nightly enemas impossible to hold in because the perianal inflammation was so severe. Even a temporary loop ileostomy to rest my bowel and give the inflammation a chance to heal didn’t work.
Psychologists and a hypnotherapist helped with some coping mechanisms as did attending and later facilitating a CCA support group, but my Crohn’s just got worse. At my last colonoscopy, my gastroenterologist couldn’t even get a clear picture from the scope. As soon as the blood was wiped away, more would appear.
Hope was hard to maintain.
Decision made! Time for surgery…
After 4 years, I’d had enough. The huge decision I’d grappled with for months, the decision from which there was no turning back, became inevitable: a pan proctocolectomy with permanent end ileostomy. Although I knew what living with an ostomy was like, this was something I would have for the rest of my life, until I was old (and quite possibly senile!). After 6 hours on the operating table, I woke up heavily sedated, minus a few pretty major body parts, and with the addition of a nifty little ostomy bag!
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.