March

My brother-in-law sadly passed away due to complications arising from Crohn's. This was a major turning point in my life, and it affects me to this day. There began to be a nagging thought at the back of my mind: Could this be what happens to me too?

As the year unfolded things definitely did not improve.

April

I work in event management, and my work started to disappear due to COVID-19. As the true scale of the pandemic became apparent, clients began to cancel event after event.  

May

My work into the 2021 had been cancelled. At that time, it felt like the events industry was fully destroyed.

June

The post-traumatic stress from my brother-in-law’s passing, and the stress caused by the pandemic started to take its toll on my mind and body. I had a severe Crohn’s flare-up which put me in bed for days.

August

Another Crohn’s flare-up resulted in me being rushed into hospital with sepsis.

November

Planned keyhole surgery to remove the affected part of the bowel led to emergency stoma surgery. They had to open me up and I woke up with an ileostomy that I wasn’t expecting.

I had lost a lot of blood so I was fighting for my life.

This was far from ideal during a pandemic. I was not able to have any visitors, and my wife was not sure what was happening, panicking about what state I might be in. 

On my return home I could see the shock on the faces of my wife and 2 daughters. I was shocked myself when I caught a glimpse of myself in the mirror. I had an infection from the surgery, so after 6 days at home I was back in hospital.

The next 5 days were incredibly difficult. I didn’t get a full night’s sleep because, due to the fluids I needed, I had to drain my stoma bag every 20 mins.

I was exhausted and emotional, and getting flashbacks to the loss of my brother-in-law back in March. I felt that I was right on the edge of what anyone can endure and in need of serious help. My wife was incredible at caring for me when I was discharged, carrying out research and making necessary phone calls.

December

I was confined to a wheelchair for 3 weeks before I began to try walking and talking again. At this point, I was constantly in pain and heavily reliant on pain killers. My new ileostomy was causing me embarrassment and it was taking its toll on my mental health and my family around me. I hadn’t slept a full night since early November.

Over the coming months I experienced all sorts of reactions from people. From full on support and help from my friends and colleagues to pure ignorance. I have been confronted for parking in disabled spots in the early days when I was really struggling, and I’ve had people knocking aggressively on toilet doors to hurry me up. When I try to explain, this is met with laughter which is unacceptable to me.

Toilets themselves have given me numerous problems. Some don’t have working hand basins, there’s no locks on the door, and there’s no adequate clean space to change my stoma. I’ve often reconsidered going to any bar or venue for fear of something like this happening.

Now

Over 18 months have gone by, my ileostomy is still painful, and I still struggle to get a full night’s sleep, but I cope.

Although difficult, I have developed methods of coping with daily life. I think back to the young people with Crohn’s and Colitis I met through various treatments and hospital visits. I was a grown man when all this happened to me so I can only imagine how awful this must be for children and their families.

We can help by:

• Creating an open forum for patients to discuss their concerns and problems.
• Raising money for vital research.
• Raising awareness so people consider Crohns and Colitis in their own fundraising efforts.

I am more determined than ever to improve the lives of young people starting out on the same journey.