The inflammatory bowel disease team in Southampton have become the first clinical team in the UK to experience a day in the life of their patients using an innovative 24-hour app.
Doctors, nurses, dietitians, researchers and pharmacists at University Hospital Southampton used the In My Shoes app at the same time to understand how Crohn’s disease and ulcerative colitis can impact patients’ lives.
The chronic conditions, which affect more than 300,000 people across the UK, are the two main forms of inflammatory bowel disease (IBD) and can cause fatigue, significant abdominal pain, malnutrition and frequent and severe diarrhoea with bleeding.
The app, which launches across the UK today (Tuesday, 19 November 2019), has been developed by national charity Crohn’s & Colitis UK and Takeda UK and delivers notifications to users which include a three-minute warning to find a toilet and if a type of food may trigger symptoms.
It aims to break down stigma, reduce isolation and encourage people to think of ways they can support friends, family and colleagues living with IBD, as well as prompting conversations between patients and their healthcare teams.
“The app is a great way for us to have a conversation with our IBD patients about what they’re going through and it has really helped us relate to them in a very different way and a way we haven’t before,” said Anne Sanderson, clinical nurse specialist in gastroenterology at UHS.
“I wondered if the app would tell me something I didn’t already know about what our patients go through. However, it was very interesting to have to think constantly about where were the nearest toilets – not knowing when that urge would come and whether or not to stay in to be safe or go out and run the risk of an accident.”
She added: “I think, aside from healthcare professionals, for friends and family with no insight this will be a great way of having a small understanding of what the patient goes through.”
Anna Wills, senior gastroenterology dietitian, said: “The app demonstrates how being too tired to eat and having to manage diet around medications would be a challenge and I can see how patients either choose less nutritious quick meals or nothing at all, compromising their nutritional intake.
“I like to think I have a lot of empathy with patients but the app certainly made me more aware of what patients face day-to-day – we only had a taster for 24 hours, they live with this every day.”
Consultant gastroenterologist Dr Fraser Cummings said: "This app is thought-provoking and will be useful for improving understanding among family and friends and may help assure patients that the teams looking after them have increased insight into the impact these conditions have on every aspect of their lives.”
Patient Michelle Ripley, 26, from Southampton, was diagnosed with Crohn’s disease at the age of 19 and has had three operations, including a bowel reconstruction, and has a restricted diet.
“IBD has affected every aspect of my life and it can be difficult when people don’t always realise or understand what a struggle it can be and how serious it is,” she said.
“My boyfriend Alex and mum Pam, who has been through every step of the journey with me, have both used the app and agreed they had never truly realised the extent of the condition and the immense strain it causes.”
"Understanding what people with Crohn's and colitis go through is so important to improve the lives of everybody living with these debilitating conditions," said Sarah Sleet, CEO of Crohn’s and Colitis UK.
"The In My Shoes app sparks conversations that soon lead to practical things we can all do to help.”
Posted on Tuesday 19 November 2019