How it feels – unpredictable symptoms and toilet access

For many people with Crohn’s or Colitis, attending events and social gatherings when you might be living with unpredictable symptoms can feel overwhelming and stressful, especially when it comes to worries about toilet access. David is a lifelong football fan and Chair of the Hull City Disabled Supporters Association. He was diagnosed with Crohn’s Disease more than 30 years ago when he was in his early 20s. This is his story.

I’m 59 now, so I suppose I’ve lived with Crohn’s for most of my life. I’ve had to learn to adapt, and I am always happy to do anything to make the public more aware of what is still, largely, a hidden condition.

One of my big passions in life is football. That’s something that never changes, no matter how I’m feeling. I want to be able to go to a match and not worry about whether I’m going to have toilet access.

I support Hull City FC and I became aware that there was no voice for disabled fans at the club. So, I decided to do something about it: I put out a survey to find out about what my fellow supporters thought about the club’s facilities and gradually recruited other fans with disabilities so we could get a formal group going.

We now have a website, host coffee mornings and have helped improve toilet facilities at the ground as well as bringing in hidden disability lanyards and RADAR keys. We’re getting bigger and better all the time. We’ve got to educate people because that’s the only way things are going to change.

How do I think things have progressed since I was diagnosed with Crohn’s all those years ago? Well, there is a slow but greater understanding of what is, let’s face it, a difficult subject: waste production. Colostomy friendly toilets are becoming more prevalent. I’ve noticed stickers in service station toilets and I enjoy listening to Tom Speight, who is a great advocate for everyone with Crohn’s and Colitis, using his platform for good.

This is a charity that raises awareness to help the general public understand what it’s really like to live with Inflammatory Bowel Disease day in, day out. Things are definitely going in the right direction and I’m optimistic about the future. Of course, we can always do more, though.