My story
An ostomy is a life changer!
Imagine being a vibrant and energetic 23 year-old, enjoying good health and happiness. Suddenly, without any warning, you find yourself plagued by excruciating chronic abdominal pains. It feels as though your stomach is being consumed by fire, burning relentlessly from within. Simultaneously, your bowels become twisted, causing severe constipation. Your abdomen bloats, making you appear as if you are six months pregnant, and your appetite completely vanishes. Adding to the distress, you become pale, drenched in sweat due to the pain, and uncertain whether you need to vomit, defecate, or both. All of this occurs while you are at work, spending seven days underground in the coal mines, enduring physically demanding labor during grueling 12-hour shifts and not telling anyone what you’re going through, trying to cover it and suffer in silence so you didn’t look like someone just trying to get out of work.
In such circumstances, all you desire is to retreat to your bed, curl up into a ball, and escape the misery. Unfortunately, that option is not available to you at the time. Instead, you must summon every ounce of strength to persevere. Desperate for relief, you consume pain medication like it's candy, oblivious to the potential consequences of contributing to further constipation. After realizing that the pain wasn't subsiding, you endured days of discomfort before reaching a breaking point and informing your boss that you needed to leave work and return home.
At the age of 23, I was thrust into the world of Crohn's disease, a realm completely unfamiliar to me. Following a two-month hospital stay, I didn't dwell on it much until a year later when I faced my first flare-up. This marked the beginning of a recurring cycle that persisted for years. Managing the inflammation proved to be a relentless challenge, requiring a combination of medications, frequent hospital visits, and extended periods away from work. The most difficult aspect of this experience was the overwhelming sense of isolation, as it often felt like nobody truly comprehended the depth of my struggles, be it at work or at home.
I grappled constantly with flare-ups, and in my twenties, I must admit that I was ignorant about my condition. I overlooked the warning signs and did not prioritize self-care. Fast forward to August 2022, I started experiencing intense lower back pain. This initiated a two-month odyssey spanning three hospitals as we sought to identify the root cause. Throughout this period, I endured excruciating 10/10 pain, yet my suffering was not taken seriously by those around me. Ultimately, I was airlifted to RBWH hospital in Brisbane, Australia, for urgent surgery to address a perforated ileum and blood infections (sepsis) that had brought me to the brink of death. Upon regaining consciousness after the operation, I discovered that I now had an ileostomy bag attached. The emotions that overwhelmed me at that moment are beyond words. Undoubtedly, this was the most formidable challenge I have ever encountered. For weeks, the sight of it alone would reduce me to tears.
Over time, I had to accept this new reality and summon the courage to progress. This period proved to be a significant mental and physical challenge for me. I experienced a notable weight loss, dropping from 92kgs (202lbs) to 69kgs (152lbs), and I realized that prioritizing fitness and exercise played a vital role in guiding me through these difficulties. This dedication has brought about positive changes in both my mental and physical health, enabling me to concentrate on the present moment.
Furthermore, I have found that openly discussing and expressing my emotions has been incredibly beneficial. I take pride in my ostomy, as it has played a vital role in saving my life. Over time, I have learned to embrace my ileostomy and now cannot imagine life without it. While I understand that my ileostomy is reversible, I have chosen to keep it as it has greatly enhanced my quality of life and has not hindered me in any way.
I have recently departed from my home in Australia and on an adventure in South Africa advocating ostomy awareness, despite facing some setbacks along the way. I am making sure to take some well-deserved time to rest and recover from the ups and downs I have encountered in the past few years.
In addition to this, preparing to embark on a journey across various African countries to shed light on the challenges faced by ostomates living with inadequate healthcare systems. My mission is to raise awareness about chronic illnesses and the experiences of ostomates, while also seeking sponsorship from major companies to help provide essential ostomy supplies to those in need.
I have finally discovered my purpose and passion: to support, inspire, motivate, and educate others facing similar challenges, and to raise awareness for life-changing illnesses.
Damien Gibson
Crohn’s ostomy life