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Stories

Surfing with an ileostomy bag – PART TWO

In 2011, I became a National Ambassador for Crohn’s & Colitis Australia and have spoken about my story at charity events, luncheons, youth camps, and Parliament House. When I was diagnosed there didn’t seem to be as many people with inflammatory bowel disease (IBD) and having someone to talk about it with who could relate was difficult. I’d like people to have a better understanding of IBD and my wish as an ambassador is to promote this disease more openly; as it can affect anyone at any time, and it isn’t an easy thing to live with or speak about.

In 2013, I finished with a World Ranking of 24 on the World Surf League World Qualifying Series, but unfortunately due to unexpected health obstacles in 2014 I was unable to compete in some major events and finished 2014 ranked 39th.

In 2014 while in Peru, I was extremely unwell after picking up food poisoning and ecoli, and the difficulties continued into 2015. My Crohn’s relapsed and life was put on hold as a result. I required an ileostomy bag for a second time, which ended up being the least of my worries. I had further complications and spent 10 months out of action. I went through several different surgeries, hospital visits, blood transfusions; and ended up having 20cm of my small bowel removed and the ileostomy reversed after 8 months.

With the reversal done in late 2015, I started competing again in early 2016. After a few months of being back in action I travelled to El Salvador for a major surfing event, though unfortunately fell ill while over there. I wasn’t the only person to get sick, but I couldn’t shake it like the others. On my return to Australia I had tests and scans done, though it was thought to be a relapse of my Crohn’s due to the similarity in symptoms. I managed to persist and was determined not to let it stop me. I was selected to represent Australia in the International Surfing Association (ISA) World Surfing Games in Costa Rica, in which I did but I soon realised I was still not well.

After a few months at home with no further improvement, it was clear that my condition was worsening and by the end of 2016 I’d spent three months on polymeric liquid nutrition. It wasn’t until early 2017 when I was at wits end and running out of options that I visited a Professor in Sydney who recognised a parasite in my system which had been underlying and urgently needed to be treated; 10 months after falling ill in El Salvador. By this stage I was quite unwell, and nothing seemed to be working. I ended up back in hospital mid-2017 and surgery was in discussion again. However, I managed to avoid surgery and agreed to giving increased medical treatment one last effort. It was exhausting but I still tried to continue with life as best I could, even captaining and representing team Australia in the International Surfing Association (ISA) World Surfing Games held in France.

After years of persistence with my health and competitive surfing journey, it was evident towards the end of the 2017 that it would be best if I took a step back from competitive surfing and international travel. This was a difficult realisation, but it was not a surprise decision. Over the years I’d never really been able to put in the consistent time or energy like my peers and the third world travel was detrimental to my health, particularly from 2014 onwards.

I didn’t step away completely as I was then presented with the opportunity to commentate the Australian events I had previously been competing in and coach/manage the NSW junior surfing teams I had once been a part of growing up. This eventually transitioned into leaving the hospitality industry I’d been working in for 6 years and sparked a move to Sydney in mid-2018 to work full-time for Surfing NSW.

This move took place just after requiring an ileostomy bag for the third time, after medical treatment efforts had been exhausted. This surgery presented a range of complications post-surgery and required four stoma revisions in a period of 3-6 months. The stoma continued to prolapse, abscesses and perianal fistulas became an ongoing nightmare, and the perianal stricturing and Crohn’s were no longer manageable; leading to my final surgery in 2020.

As a result, I resigned from work, put university on hold, and moved back home to the Far North Coast to allow myself the best opportunity to heal and recover properly.

On the 1st of February 2020 I had my rectum and anus removed with the creation of a permanent colostomy. I am confident that this will now allow me to move forward and live a life with quality, and no longer be stuck in the viscous cycle I’ve been in.

Due to the nature and complexity of my disease and medical history, my new stoma was left defunctioning while my old ileostomy stoma remained in place while my body healed from the major surgery; this required me to have two bags until my body was ready for the next stage of surgery.

The final stage of surgery took place on the 27th of March, where my ileostomy was reversed and my colostomy was connected. I also had a parastomal hernia removed, as well as my appendix.

I am currently 11-12 weeks post op from my rectum removal, it has been a very slow healing process and my wounds are still open, but I am making progress. I’m 4-5 weeks post the final surgery and am doing well, though I have a feeling I’ll be healed from the second surgery before the first.

My new stoma is taking some time to adjust, as the feeling with my colostomy is different from my previous ileostomies and I can feel movement through my bowel as my body is learning to function in that area of my bowel again. This feeling should ease over time and each day I am now starting to notice positive adjustments and progress with my healing.

It’s been an exhausting journey, and I’ll be the first to admit that I have my down days and weeks too. However, everybody deals with some sort of adversity in their life. It’s a matter of how you choose to deal with it that makes the difference. A negative situation may arise but there is always something positive to take from it, even if it is difficult to recognise it at the time.

I may still be healing and in recovery, but I am excited for my new healthy life with my permanent colostomy.

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