Hi There! My name is Aiyahna and I am an 18-year old Crohn’s Disease Warrior. 

My Crohn’s story began a mere three years ago when I was 15 years old. Unlike most Crohn’s disease sufferers (whose diagnosis can sometimes take years), my diagnosis was swift due to the discovery of a fistula (that had tunnelled its way through the wall of my colon) in addition to ulceration and inflammation throughout the entirety of my digestive tract. After an extended hospital stay, my initial Crohn’s treatment featured two months of exclusive nasal gastric (NG) feeding (to assist in soothing and reducing inflammation within my digestive system), followed by a cautious re-introduction of nutrition adhering to a strict Crohn’s diet (gluten, dairy and preservative/additive free). During this time, I was also treated through regular infliximab infusions (supported by daily medications) to help my body progress into remission. I continue with my infliximab infusion treatment regime 3 years on and am grateful and fortunate to have maintained remission during this time.

Prior to my initial acute flare, I was unaware that my own body was attacking itself and ravaging the inside of my body. We (my family and I) had thought the symptoms I had been intermittently experiencing – mouth ulcers, exhaustion, occasional nausea, emotional overwhelm and digestive disturbances – were physiological responses to the stress of my transition into senior high school.  In hindsight, we weren’t wrong – as stress is most definitely an environmental trigger for Crohn’s episodes/symptoms – but we were just not aware that an auto-immune disease was the underlying cause of those symptoms.  

Living with Crohn’s can feel like riding a roller-coaster at times. Starting with a huge uphill climb as our bodies recover, followed by enormous drops as we realise that our lives have to change. Moments when we feel like we are flying upwards as we regain momentum in life, and then moments of coasting as we adjust to our new normal. Then comes all the twists and turns, loop-de-loops and upside-down moments as we go to battle for our body and remember the ease of life pre-Crohn’s. However, I have found that around every corner there is a lesson learned and a strength found, empowering us from within and shaping the people we are yet to become. The best thing about this Crohn’s journey, like with most rollercoasters, is that all the challenges faced—those scary, heavy moments where all you want to do is get off the ride— are what brings us to the moments that makes us feel most alive. It’s a gift showing us just how wonderful it is to live —knowing pain and discomfort and still choosing to show up and find the good, regardless.

My Crohn’s story is not just about Crohn’s; nor is it just about my diagnosis, my physical health or my recovery and current remission status. 

My Crohn’s story is one of acceptance. I live with Crohn’s but am not defined by it nor controlled by it.

My Crohn’s story is one of creating opportunity from within my experiences rather than limiting myself.

My Crohn’s story is not one of self-pity, nor is it a story about excuses or reasons to give less than my best. It is not about dwelling upon the unfairness of my body being home to a disease. Rather it is an encouragement for me to be a little more respectful of my body’s uniqueness and to live a full and vibrant life that nurtures my health.

My Crohn’s story is both a promise and a reminder to myself, and in shared camaraderie with our IBD community. A promise to myself that I can choose to thrive, and a reminder that my thoughts, my attitude and the ownership of my choices will be the difference between suffering through IBD, and growing and thriving with IBD.

My participation within the Crohn’s and Colitis Australia Youth Empowerment Program (YEP) reflects my promise. When I was diagnosed in 2019, Crohn’s and the world of IBD were foreign to us (myself and my family). We found it difficult to source reliable information to help us to understand the disease – from diagnosis, to treatment, to prognosis. We also found it difficult to access ‘age-appropriate’ support (outside of my Gastroenterologist) to navigate the process from illness to remission and all the wild, roller coaster, moments in between. I found myself feeling a little disconnected from my peers, somewhat isolated, a little alone and a lot unsure of myself. Our family has a saying, “You can’t do it alone, but only you alone can do it.” 

As IBD sufferers, we need to take personal responsibility for helping our bodies to support our health.  However, you do not need to be alone in your journey. Seeking and accepting support will be critical in helping you to manage your disease and to find answers, new information and ideas.  You will be supported by your doctors, your family and, if you allow them to, your friends and your community—including all of us here at “YEP! Online”. We’re all here with you on your journey— we want you to share in our enthusiastic and positive camaraderie and we want you to know that you’re not alone! 

So, welcome to the greatest journey of your life. Crohn’s is not a test (though it may feel like one sometimes)—it is an opportunity for you to discover just how amazing your body is and to uncover the hidden depths of strength inside of you. We have a magnificent opportunity to teach others around us how to flourish — regardless of their circumstances or the challenges we are facing.  So, let’s do this together. Let’s build a team, let’s support each other, let’s lift each other up and let’s make a difference. Let’s make our life stories —despite living with IBD – extend beyond the ordinary. Instead, let’s make them extraordinary!

To share your story, click here.