Can an app help others understand what it's like to live with Crohn's disease?

Do you ever feel like people who don't have IBD just don't get it some times? Who am I kidding? Of course, you do. And part of it is that it's hard to really communicate what living with Crohn's is actually like.

Urgency and panic when living with Crohn's

Case in point, we might say we need the toilet when we're eating out. What we really mean is that we need a toilet RIGHT NOW not in the ten minutes it takes you to pay the bill and get yourself ready. And, if we don't make it in thirty seconds, things are going to get ugly.

But how can we properly communicate the urgency and the panic? We might explain that we woke up with pain last night; but how can we communicate that it wasn't just a pain but a sharp, stabbing sensation that takes our breath away and made us wonder if we should go to Accident and Emergency again?

An app to explain Crohn's and UC to others

To be honest, I don't think you truly can put it into words. However, the UK charity Crohn's and Colitis UK have launched an app that is designed to make this a little bit easier. And I thought I'd share a little more about it to see if it could help you and your loved ones-whether you download it or just use the ideas in principle.

So how does it work? Well, it's called In My Shoes; and it aims to replicate what it's like to live with Crohn's or colitis over a twenty-four hour period through notifications of tasks. I signed up and saw I could join as a relative or friend of someone with the disease or as a sufferer myself.

Explaing what urgency and needing to find a toilet might feel like

As soon as I signed up, my first notification pinged: I needed to find a toilet and I had three minutes (slightly optimistic there!) to hold it. I really liked this idea; it explains that you're unable to hold it and the countdown ticking by the second does create a little bit of urgency.

When you find a toilet, you need to take a photograph of it to prove it. What's the point of this exercise? Well, hopefully for those out an about, it'll show how actually there really aren't enough public toilets within a three-minute radius to take the photo; which can show how it increases anxiety during a flare-up. It'll show how many times those of us with IBD are left feeling helpless when out and about (and why we memorize every toilet in town!)

Once you've completed the activity, the app also explains how a patient might feel in this situation: 'you feel a little shaken up and stressed about the lack of control over your own body.'

It also has a writing prompt asking: how would you feel if you couldn't control when you needed the toilet? I REALLY love this. After all, we know the only way people can empathize is to truly live through it and this app tries to get people to imagine that.

Medication reminders, notifications throughout the night, and more

As the day goes on, more notifications pop up. There are medication reminders to show how the medication is a daily part of our lives. For that reminder, I was told I couldn't eat or drink with this medication so IBD patients often find this difficult.

I didn't really understand that part, to be honest as, other than antibiotics, I couldn't understand which medications this is the case for (but I do only take one azathioprine). There are scenarios when you are invited to socialize and have to weigh up fatigue. If you keep notification on, they wake you up several times in the night to remind you that people with IBD often toss and turn in pain.

This goes on for 24 hours, with mood, pain and energy levels fluctuating as you. Do I think this app can help improve empathy from our friends and family? I think it depends. The user needs to be open-minded and take each task on (and not just turn notifications off). Of course, it's easy to say 'imagine you need the toilet' and it's very different than feeling like you're going to have an accident that very second. It's not the same thing.

Helping others understand the psychological impact

But it does highlight the relentless nature of Crohn's disease and UC, it's different components and the fact it feels like there's always something to deal with. I read that this app is also being trialed on doctors and I think this could make a real difference in helping them understand the psychological impact of our illness.