I was diagnosed with Crohn’s aged 10 in 2001. It being so long ago, I don’t have a memory of pain, but I do have a clear picture in my mind of the vivid red blood in the toilet bowl and on the tissue paper. It looked so weird and terrifying. The strangeness of it told me to hide it from my parents, which I did for many weeks - until my weight loss, paleness and vastly increasing toilet visits were all too apparent. After being dragged kicking and screaming to the GP, a stool sample request meant there was no way of hiding the blood from my mum anymore. Hospital and scopes quickly followed.
My adult life has only been minimally affected by the Crohn’s, but aged 10 to 17 was when I really struggled, making my way through every treatment available until there were no more options left, and I needed to have stoma surgery.
The pain and physical symptoms are of course traumatic and formidable, but the more hidden mental side is what I remember the most when I think back on my family's toughest times fighting the disease.
Michael
Living with Crohn's
As a teenager, the disease and symptoms were barriers to friendships, they pushed me to an isolated teenage life and even darkened my character – with my frustrations, loneliness and depression shrouding me. I concealed these battles from everyone, suffering alone. To teenagers their circumstance is unique, no-one else can fully understand. Chronic illness magnifies this, you feel more alone, more disconnected.
I had my surgery at 17 years old, removing the worst of my colon drastically improved my health, but the cunningness of Crohn’s endured as it decided to become active in my mouth – known as Orofacial Granulomatosis. But thankfully this and the rest of my Crohn’s symptoms are now predominantly kept in check by injections and tablets. Of course, I have some flare ups and the occasional issue, like a blockage or some stoma related discomforts, but nothing that is as challenging as my pre-surgery life.
In my teenage years there was nothing I feared more than a stoma bag, the stigma and all the unknowns that come along with it. But after a year or so of having a bag, it became very clear that it was the best thing that has ever happened to me, it opened so many doors and allowed me to do things I couldn’t have dreamed of when I was chained to the toilet. For example, backpacking in South America, Canada, Australia and New Zealand – something that would have been impossible without my surgery.
I concealed my battles from everyone, suffering alone. To teenagers their circumstance is unique, no-one else can fully understand. Chronic illness magnifies this, you feel more alone, more disconnected.
Michael
Living with Crohn's
I do feel that I lost a few years of my life to the disease, having to give up many activities and being stuck in a very strict but safe routine, which was basically home, school, home, hospital, home. My bag granted me the freedom to make up for that lost time.
In the hope of helping other young people living with Inflammatory Bowel Disease and their families, I decided to write a book - The Secret Life of Crohn’s. The core of the book reflects on the mental challenges I struggled with growing up with severe Crohn’s; having my normal life flipped on its head at primary school, the complexities of navigating adolescence with an easily misunderstood condition, and eventually needing to have surgery and adapting to living with a stoma bag.
I hope my experiences will show others they are not alone, and learn what I eventually did, that seeking help and talking to others can really help - no matter how hopeless things seem.
Learn more about living Crohn's
Everyone experiences Crohn’s differently. Symptoms can include pain, diarrhoea, tiredness and blood in your poo. Other parts of the body can also be affected. Being told you have Crohn’s can be a shock. You might feel anxious or unsure about what comes next and how your life might change. We've got plenty of support available.