Billy The Bag

My name is Rourke. I’m a 23 year old living in Perth, Western Australia. Since the age of 16 there has always been something “not quite right” with my health.

I experienced nausea, fatigue and abdominal pain every day. My periods were excruciating and occurred whenever they felt like it, and overstayed their welcome. I visited countless GP’s and was diagnosed with Irritable Bowel Syndrome (IBS) after a colonoscopy and endoscopy. I tried special diets and medications to minimise my symptoms with no relief. I knew deep down there was something more going on but I struggled to get any answers from doctors.

I was passed from specialist to specialist. I had invasive testing done which didn’t show anything and I was eventually told that I was depressed, referred to a psychiatrist who placed me on medication, and it was all in my head. I began to believe this diagnosis and tried to do the best that I could with my health. After a few years on medication and feeling worse than ever I chose to see yet another GP. He told me I could have a disease called Endometriosis and referred me to a gynaecologist. After seven years of searching for answers I was finally diagnosed with endometriosis in June 2015 via a laparoscopy. It was amazing to have a true diagnosis but unfortunately the symptoms returned within weeks and I was placed on the pill to no avail.

It was recommended that I have another laparoscopy to get an idea of what was happening, which I did in February 2016. I was discharged and five days later returned to my job in admin. At home the next day I suddenly experienced strong abdominal pain. I was home alone so I called my mum who immediately suggested I go to the hospital. CT scan results showed that my rectum had perforated and I was showing signs of sepsis infection; I needed surgery. It was midnight and my family had gone home, so I was all alone. I was told there was a possibility of getting “a bag” but if we didn’t go to surgery immediately I would be in real trouble. I consented to the surgery as the pain was excruciating and I was desperate for relief.

After surgery I was placed in critical care as my heart wasn’t too happy. I can’t remember the moment I realised I had a bag, I think I just knew. There are different types of ostomies, with the most common being an ileostomy (of the small bowel), a colostomy (of the large bowel) and a urostomy (of the urinary system). I didn’t want to look at my stomach for days as I was terrified of what I might see. The first time I looked I was pleasantly surprised; it was nowhere near as scary as I’d imagined.

The bag covered my colostomy, I had a drain inserted into the right side of my abdomen and around thirty staples holding my wound together as I had a laparotomy. I experienced the Stomal Therapy Nurse changing my bag for the first time when my bowels decided to work and I shat all over the nurse – talk about bonding. My time in hospital is a bit of a blur. I think you just do what you have to do to get by; in my case that was to make a lot of jokes and fill the silence with laughter.

It is tough, I won’t lie. It really hit me when I left the hospital five weeks later and was truly alone for the first time. Each day I would fight the overwhelming urge to cry, then one day I stopped fighting. I think I cried wholeheartedly nearly all day every day for at least a week. It was exhausting. Afterwards I felt a whole new level of strength. I felt like I could do this. Yes, it sucks, but I could do it.

I’m very lucky that a reversal is on the cards for my ostomy. The plan is to undergo a major surgery to reconnect the perforated tissue and to form an ileostomy. That should allow the scar tissue to heal and then eventually the ileostomy can be reversed too. I’ve been told that what happened to me was rare. My bowel wasn’t perforated byendometriosis, I was just unlucky. Unfortunately my Endometriosis symptoms feel as though they have been aggravated by the complication and I’m now looking into healing myself holistically rather than surgically.

To others who are worried, my advice is to stay positive. I can remember being told that Ostomates (people with ostomies) live normal lives and thinking that would never be me. Guess what? Here I am. Living, breathing and wondering what to wear on the weekend just like a regular person. I’ve found a lot of strength from other Ostomates, my family and my partner and I’ve learnt that crying can allow for a huge release of emotion, which can help to reveal inner strength. I am lucky in more ways than one and make time to give gratitude to that each and every day.

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