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Brittani is a well-accomplished surfer from the Far North Coast of NSW and a Crohn’s & Colitis Australia (CCA) Ambassador. She was diagnosed with Crohn’s disease at the age of seven and she believes that by sharing her story she will create awareness and inspire people to strive for their goals and follow their passions.

I have lived with Crohn’s disease for 23 years, but this year I faced one of my greatest health challenges and now have a permanent colostomy. I have previously required three ileostomy bags in my life, with the third one presenting the most issues. It wasn’t what I signed up for, and it wasn’t what I’d expected.  It became an ongoing nightmare with continuous prolapsing, four stoma revisions, constant bag leaks, perianal fistulas and abscesses. My perianal disease was no longer manageable and as a result of my complex history with it, my most recent surgery was inevitable.

Inflammatory bowel disease (IBD) is a chronic and largely hidden disease affecting approximately 1 in 250 people. By 2022, it is expected that the number of people living with IBD in Australia will rise to over 100,000. Many of these people will be braving experiences like mine as well as situations unique only to them as not all will require surgery.

In 2007, when I was 16, I weighed in at 43kg. It was at this time that I was told the news that nobody wants to hear; major surgery was inevitable due to a stricture (narrowing) in my bowel. I came out of my first surgery with 30cm of my colon removed and, to my relief, no ileostomy bag. However, that excitement was short-lived and two days after leaving hospital I was at home when a major bowel haemorrhage occurred. At first, I was not taken seriously by hospital staff and it was frustrating. I was later rushed into emergency surgery and received five units of blood via transfusion.

Nearly a third of people with IBD are admitted to hospital each year and 77% of these admissions are unplanned emergencies.

Because IBD is an invisible illness, it can sometimes be hard for patients to communicate how serious their condition is to healthcare practitioners, which can lead to dangerous delays in treatment. CCA is dedicated to raising awareness in the general community as well as among doctors and other healthcare practitioners to ensure people with IBD feel supported during these episodes.

My hospital admission later resulted in my first ileostomy bag. 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. 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 and I went on to have a successful surfing career in the following years.

This is part of the reason why I’ve been so open with my journey, and it is part of the reason I was happy to become an ambassador for CCA in 2011. Being an ambassador for CCA means a lot to me personally. It allows me to help other people by being the type of person I needed when growing up with the disease.

CCA is committed to creating friendly environments where people who have IBD in their life can ask questions, share their experiences and know that they are not alone. That is why CCA organises forums, support groups and youth events, so that the IBD community can form lasting connections and find solutions to living with the disease together.

On the first of February 2020, I had my rectum and anus removed with the creation of a permanent colostomy. 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 in March, when my ileostomy was reversed and my colostomy was connected. I also had a parastomal hernia removed, as well as my appendix.

It’s been an exhausting journey, and I’ll be the first to admit that I’m not always strong and positive. I have hit breaking point several times and do have my emotional moments. Some people think of themselves or other people as weak when they hit that point, however, I’ve learned that it is not weakness at all – these moments are just a reminder that you are human.

Making a positive difference for each person with IBD is my personal wish and I ask that you help me, and Crohn’s & Colitis Australia, work towards this by donating today.

To donate, please use the form below, and a tax deductible receipt will be emailed to you. Alternatively, you can call CCA on 1800 138 029 to make a donation or for more information on regular giving to support the important work of CCA.

I welcome anything you can offer, especially since we are living through a time when the IBD community is particularly vulnerable.

Yours sincerely
Brittani Nicholl

If this story has raised any issues for you, please contact Lifeline on 13 11 14 or beyondblue on 1300 22 4636.