In My Shoes: Paul’s story

26 June 2019

Paul has had Crohn's Disease for 15 years. Paul's friends and family have been using Crohn's & Colitis UK's new app, In My Shoes: 24 hours with Crohn's or Colitis, to see if it can help them better understand what Paul lives through every day. 

If you were to walk a mile in my shoes, you’d be a mile away and I’d have no shoes. Or something like that? Excuse the joke. This week my family and many other families and friends of people with Crohn’s or Colitis have been doing just that though. Walking a mile.

Thanks to the clever bods at Crohn’s & Colitis UK and Takeda UK, you too can experience life in the shoes of a patient with Crohn’s or Colitis. Sounds exciting? Maybe. But as my wife and kids will attest, it’s certainly eye-opening.

Unless you’re really committed to method acting, nobody is going to go out of their way to poo themselves at 8 in the morning. But that’s just what this app has you doing. Dealing with toilet urgency in real time, as I and hundreds of thousands of patients with Crohn’s or Colitis deal with every day.

At first it’s funny, a novelty, but then you get the message to tell you that you weren’t quick enough and you have pooed yourself. Then the realism sets in. What would YOU do if that really was you? In a public place, covered in foul smelling mess and ready to cry?

I see the funny side when it’s there to see. But when three newbies to the world of Crohn’s or Colitis are suddenly having to consider life where every fart is a game of brown trouser roulette, where you are actually having to actively think about toilet locations, the same way I do a hundred times a day, it’s enlightening to say the least, and if my blog has affected you in anyway previously I implore you to download it and try it.

You see, I’ve lost countless friends. Too many to list. My list of Facebook friends is full of people I’ve been close to but have all but lost contact with other than to see where they’re going on holiday or when they’ve taken a quiz to see what kind of potato they are. But they’re there as “friends”. But through me deliberately sabotaging the friendship at times because it was too hard to maintain when I didn’t have the energy, or a lack of compassion from both me and them, or being a let-down… The friendships have become acquaintances. Nothing more. Nothing less. That’s probably really sad. And I should probably be more affected by it. But oddly, I’m ok with.

I keep a small circle. The people that don’t care when I cancel plans last minute are the ones that matter. And the ones that do care when I cancel don’t matter.

I guess all this makes me sound horrifically bitter about life with living with Crohn’s or Colitis and is maybe at odds with my more uplifting inspirational posts. But it is the harsh reality of life with Crohn’s or Colitis. You can have a big circle. You can have all the friends. I simply chose not to. And it’s a choice I have become ok with over time. And I have an inner strength that life with chronic illness bestows upon you that you don’t know you have until you need it. And then it’s always there. Always.

► Read Paul’s full blog: Eclectic Avenue

This programme was developed with and partially funded by pharmaceutical company Takeda UK, one of Crohn’s & Colitis UK’s corporate partners.