I experienced 24 hours with Crohn's to understand my colleagues and customers better

Published 11 July 2022

Louise is an area manager for Transport for London (TfL), covering Hainault & Wanstead. She is responsible for managing a group of stations and their staff, making sure staff are delivering a good service to customers.

Louise shares her experience of using our app, In My Shoes, and tells us what it taught her about life with Crohn’s or Colitis and how it’s changed the way she thinks about station toilets.


The saying goes “before you judge someone, walk a mile in their shoes”.

Thanks to the In My Shoes app, I was able to gain a clearer understanding of what it’s like to have Crohn’s or Colitis. The app took me through an immersive 24-hour simulation.

Over the course of the day and night I received a stream of notifications and tasks. The number of things that needed my attention gave me a real insight into what some people go through every day.

I had read that the symptoms of Crohn’s and Colitis can be devastating, but I had no idea how much it can affect your sleep and your diet. There are constant logistical considerations, pain, and discomfort, no matter how well you manage your condition.

When I was completing In My Shoes, I had a normal busy day planned. 


Louise
Area manager for TfL

 

 

 

There was the usual scramble to get everyone up, dressed and out of the door in the morning. The commute to work, getting some work done, meetings and grabbing lunch on the go. Yet the app notifications were relentless from dawn until dusk, and beyond. I was told to avoid high-fibre foods, take medication and it alerted me to pain, exhaustion and low mood. 

Frequently, messages popped up telling me I had stomach cramps and urgently needed the toilet. Each time, a countdown timer gave me three minutes to find a loo. On one occasion, I couldn’t get there in time, as I was on the tube between stations.

The app notified me that I'd had an accident and needed to change. How would I have dealt with that if it were real? 

As a parent of young children, I have plenty of experience using public toilets. However, I’d never truly understood what these facilities mean to people with conditions like Crohn’s and Colitis.

Even overnight, I was woken by messages alerting me to use the toilet.

I found myself wondering how anyone could cope with this in real life. It felt like a full-time job managing my condition on the app alongside my actual job and role as a parent. Never mind any hobbies or social life.

The symptoms were painful, awkward, and debilitating. It felt impossible.

That was just one day. 

At the end of the 24 hours, I got to go back to my normal life. My normal life, where I don’t suffer from chronic pain, bloating and exhaustion. I’m not reliant on medication to get through the day. I don’t live my life in constant fear of urgently needing the loo and the consequences if I can’t make it in time.   

The experience has been incredibly thought-provoking, and I would recommend it to anyone. It really opens your eyes to what others deal with.

Going forward, I’m committed to working with my team to ensure we keep our station toilets available to those who need them. I’ve learnt that they’re not just a convenience; for some, they’re an absolute necessity and give people the ability to travel with confidence on our network. 


In My Shoes: 24 Hours with Crohn’s or Colitis – is an immersive app that allows anyone to experience first-hand what it’s like to have Crohn’s or Colitis.

From depleting energy levels to managing pain, from rushing to the toilet to juggling work and a social life - the condition can affect every part of your body, and every aspect of your life.

Get the app

You can download the app for free from the app on the App Store or the Play store for Android.

The In My Shoes app was developed with and partially funded by pharmaceutical company Takeda UK, one of Crohn’s & Colitis UK’s corporate partners.

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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can provide information on a range of subjects including:

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If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.