Research

75% of people living with Inflammatory Bowel Disease (IBD) feel isolated daily

New research from the Irish Society for Colitis and Crohn’s Disease (ISCC) has revealed that 75% of IBD patients feel isolated managing the condition on a day-to-day basis. Over three quarters (78%) feel that IBD has negatively impacted their mental health, withover half (52%) admitting to feeling exhausted when their IBD symptoms flare1. It is estimated that at least 40,000 people across Ireland have IBD2, while paediatric cases of IBD have increased three-fold in Ireland since 20003.

The nationally representative research was conducted among 446 people living with IBD in Ireland and looked at the realities of life with IBD, as well as the support and resources available to sufferers. Unfortunately, the majority (65%) of people living with IBD feel there is stigma associated with the condition, and 58% of people would like access to support on a day-to-day basis from other people living with the condition1.

The vast majority (86%) don’t think Irish IBD patients have access to the necessary resources and information to manage living with the condition, particularly around access to information about clean accessible toilets, with 88% of IBD patients admitting to feeling anxious about the availability of toilets when they go somewhere new.

In conjunction with World IBD Day which was on Sunday, May 19th, the ISCC has launched the new ‘IBDWELL’ mobile app to help address some of the concerns and difficulties for people living with IBD in Ireland. The app has been developed following an innovative hackathon process where members of the public gave up their time to help create practical solutions for those living with the chronic disease.

The new ‘IBDWELL’ app has a variety of useful functions and support information to help improve the day-to-day life of those living with IBD. This new app is welcome news to Ireland’s estimated 40,000 IBD patients, as it helps those living with IBD to:

  • Tag, review and provide feedback on facilities and public toilets nearby with innovative “Restroom” function
  • Track health, diet and medication to make healthcare appointments more efficient
  • Display clear “No Waiting” card when sufferers urgently need to access a toilet in a public place
  • Connect and share personal experiences and ask questions to other people living with IBD
  • Access useful content, videos, audio features, FAQs, exercises, practical self-help, mindfulness, ISCC contact details, blogs, news and the full ISCC website

Bruno Lucas, Chairman of the ISCC, at the launch of the new app said “Our new research reveals that life with IBD in Ireland is filled with anxiety, with a lot of patients feeling that it is difficult to access information and resources to help manage their condition. We developed the new ‘IBDWELL’ app to help the estimated 40,000 people living with IBD in Ireland to better manage their condition on a day-to-day basis. The app is a vital new tool that we hope will also facilitate more efficiency in terms of healthcare provision as sufferers can provide healthcare professionals with precise details on their day to day management of the disease.

At the Hackathon, it was important that patients were part of the development of the solutions, so it is fantastic that people living with IBD have contributed to the development of this innovative new resource from the start. We would like to thank Pfizer Ireland for their continued support in the development of the new ‘IBDWELL’ app”.

Caitriona McCarthy, Medical Lead Inflammation and Immunology at Pfizer Ireland commented “Pfizer are really delighted to partner with the ISCC on the IBDWELL app, this fantastic idea was borne out of the Pfizer supported Hackathon a number of years ago and is a welcome development for IBD patients around the country. The new research from the ISCC showcases the everyday struggle of people living with IBD and the app gives patients much needed support.”

The new ‘IBDWELL’ app can be downloaded from the Google Play Store now and from the App Store in the coming days. For more information on IBD visit www.iscc.ie.

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