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Surfing with an ileostomy bag – PART ONE

I was diagnosed with Crohn’s disease at just 7 years of age. Initially I was diagnosed with giardia, however my symptoms continued to get worse, therefore I was referred to a gastroenterologist in Brisbane. After further investigation I was diagnosed with Crohn’s disease. It was difficult to understand and what this meant for my future. Some of the symptoms I endured included abdominal pain, lack of energy, rectal bleeding, weight loss, skin problems, fevers, headaches, diarrhoea, urgency, vomiting, and anemia.

Growing up with the disease wasn’t an easy thing, especially with the symptoms I was dealing with. It was common for me at times to go to the bathroom 15+ times during the day/night. I had two long stints in hospital at the ages of 10 and 11 years, where I received a central line and was being fed through a tube. It wasn’t until I was around the age of 12 that I took up surfing, it was only a matter of time having grown up on the Tweed Coast.

During my flare ups I was prescribed a drug named prednisolone, which caused body changes, including weight gain, with a fuller and round face. Coping with this wasn’t easy, I didn’t totally understand what I was going through at such a young age, and most knew I was sick however not all understood. I was subjected to a little bit of bullying from kids but also from couple of teachers throughout my school years.

In May 2007 at age 16 I was weighing in at 43kg, it was at this time that I was told the news that that nobody wants to hear; major surgery was inevitable due to a stricture (narrowing) in my bowel. The surgeon advised me that without further investigation they would not know the full extent of the surgery needed. There were three possible outcomes;

  1. have a bowel resection and require no bag
  2. have part of my bowel looped and require a temporary ileostomy bag
  3. have majority of my bowel removed and require a permanent bag

I came out of surgery with 30cm of my colon removed, which was where the strictured bowel was; meaning I did not require a bag. You could have imagined the excitement. However, that excitement was short lived and two days after leaving hospital I was at home when a major bowel haemorrhage occurred. At first, it was frustratingly not taken seriously but I was later rushed into emergency surgery and received 5 units of blood via transfusion.

After that near death experience I was home for a month, though ended up back in hospital with more complications and was at a point where I spent weeks in complete agony. The only way I can describe it is trying to pass razor blades, it was excruciating.

The doctors tried restarting me on medications and pain relief, but nothing would even slightly ease the pain. Doctors went in to perform a simple surgery to relax the sphincter and fix what they thought was a perianal fistula, only to find that it was much worse than they intended. I had perianal Crohn’s disease and now had no skin in my anal passage, it was raw and severely inflamed; which meant further surgery was required and I would require an ileostomy bag. The ileostomy bag would allow the large bowel and rectum to rest, but doctors could not determine how long I would have the ileostomy for and there was still discussion with the surgeon that they may have to remove the entire bowel.

It was a difficult time in my life where looks and appearance seemed so important for a young teenage girl, particularly in the surfing industry. You could imagine my fear and worry. I definitely didn’t think I’d be able to live a normal life with an ileostomy and the first thought running through my mind was that I wouldn’t be able to surf ever again.

However, it was a visit in hospital from a stranger at the time who picked my spirits back up and inspired me to continue living my life doing the things I loved. I am forever grateful for this visit. The ileostomy bag was the best thing for my health, I was no longer in pain and I was the healthiest I had ever been. It was a very daunting process and it took a bit of getting used to; but I don’t think I’d be here today if it weren’t for having the bag.

Surfing with an ileostomy bag was a challenge but I soon adjusted to it all. I’d learned not to eat at least 1-2 hours leading up to going for a surf, I surfed in a one-piece swimsuit, and at times a wetsuit to keep everything in place on my stomach. People weren’t aware I had a bag attached to my stomach unless I was to tell them or they’d see me getting ready in the car park, other than that it wasn’t noticeable.

I had a few mishaps with leakage and irritation while surfing but it was worth it just to be doing something I loved.

To my surprise, I was able to live a relatively normal life and I still continued to travel and achieve a lot with my surfing in the following years; while also working in retail and surf coaching.

In 2009, I won my first Open Women’s NSW State Title, and later went on to create history by winning that same event three years consecutively. I also went on to win my first Australian Title in the third year. In November 2009, I broke my ankle in two places while surfing a local break at home, which required surgery. This kept me out of the water for 5 months and wrapped up a successful junior surfing career. While out with my ankle, my surgeon thought it’d be best to also get the reversal of the ileostomy done…giving me less time out of the water in the long run.

After almost three years of living with a stoma and ileostomy bag, I had the reversal surgery to remove the bag in early 2010. It was a daunting feeling because the bag had been the best thing for me and my health, I wouldn’t be here without it and to this day it was the healthiest I’d been for an extended period of time. With the outcome of the reversal being unknown I was scared that things would go back to being as bad as they were before I had the original surgery and I was worried my health would decline again.

Fortunately, this was not the case and in late 2012 I had my first colonoscopy since having the reversal surgery…for the first time in 16 years, I could say I was in remission; although still medicated with the odd symptom still arising.

To be continued…

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