It’s all got to come out
By Mark Boyne
I was diagnosed with Crohn’s in 2010 as a fit and healthy 25-year-old completing my law degree, playing national-level hockey, travelling overseas and living a relatively normal and carefree life. The diagnosis came as somewhat of a relief as I’d been silently suffering from urgency as well as abdominal pain and cramping for a number of years and would now have access to specialist treatment and advice.
Since the diagnosis, I’ve had a choppy and testing relationship with the disease. There’s been countless consultations and investigations a well as multiple hospitalisations and surgeries, among some periods of relative good health – I’ve tried almost every treatment out there from a myriad of tablets to self-injectables to monthly biological infusions in hospital. Unfortunately, despite everything, my disease recently advanced to the point where I was left no option but to undergo major surgery.
On 11 January 2023, I had an operation to remove my entire large bowel, including back passage (I won’t go into graphic detail…). While the surgery was successful, my recovery hasn’t all been smooth sailing and has come with some new life challenges including adapting to a permanent stoma, an ileostomy to be precise, a recent diagnosis of enteropathic arthritis associated with inflammatory bowel disease (IBD) as well as physical and psychological scarring.
Fast forward four months from surgery and I’m inching back to what I consider to be ‘my normal’. I’m grateful to have been able to return to work within a month of surgery, am well along the path to regaining the physical fitness I had before the surgery, have travelled overseas on holiday and am generally living a happy and varied life with my wife and almost 3-yo daughter. I admit that I’m not totally content with the challenges my ileostomy brings, but it is what it is, and I know that with time, almost nothing will be off-limits. Ultimately, I’m okay with where I’m at and positive about the future.
Like everyone with IBD, I’ve experienced some really difficult times. Surgery hasn’t ‘cured’ my disease, IBD doesn’t define me and I’m not ‘living with the disease’, rather IBD is part of me and has had a profound impact on shaping me into who I am; a far more resilient, tolerant and aware person.
So please excuse the strange bulge under my business shirt and the occasional loud gurgle or pop from my ileostomy during meetings or in the lift (nothing that I can do about it), and don’t pass judgment when others might need some time or to use an accessible or disabled toilet. Your loved ones or the person sitting next to you at work, on the train, at the pub or in the changeroom could very well be undergoing their own silent battle and your awareness, tolerance and sometimes interest can make a significant difference.