Access to toilets: a challenge for people with IBD

What is IBD, and why do IBD patients need access to toilets? 

Inflammatory bowel disease (IBD), such as Crohn's disease and ulcerative colitis (UC), are autoimmune diseases of the digestive tract. Other rarer forms, such as certain types of colitis, also fall into this category.

These conditions are characterised by inflammation of the lining of part of the digestive tract, due to a dysregulation of the intestinal immune system. The course of the disease is marked by inflammatory flare-ups alternating with phases of remission. The most debilitating symptoms include severe abdominal pain, frequent diarrhoea, chronic fatigue and, above all, an urgent and unpredictable need to go to the toilet.

According to surveys, 90% of IBD sufferers experience stress when travelling, due to the uncertainty of access to public toilets.

Access to toilets is a fundamental need for people living with IBD, and a lot of organisations are actively campaigning for greater recognition of this right in the public arena.

Access to toilets for IBD patients: what does the law say? 

For people with Crohn's disease or ulcerative colitis (UC), quick access to a toilet can be vital. However, unlike wheelchair users or people with visible disabilities, these patients suffer with an invisible condition that leads to invisible disability, often poorly recognised in public spaces.

To date, there is no law imposing a systematic right of access to toilets in public or private places.

Absence of accessible toilets: what are the consequences for patients' quality of life? 

Inflammatory bowel disease (IBD), such as Crohn's disease and ulcerative colitis (UC) has a profound impact on the daily lives of patients, even if it is not a visible condition. It can cause unpredictable symptoms, including inflammatory flare-ups, frequent diarrhoea and abdominal pain, making rapid access to public toilets essential.

Constant anxiety and stress 

The inability to access a toilet in case of emergency generates constant anxiety in patients. Whether travelling, at work or in public places, the stress of not having an accessible toilet nearby becomes omnipresent. This permanent stress prevents people with IBD from going about their daily activities and maintaining normal professional or social life.

Saying "no" to social and cultural outings and professional events

Because of the fear of not finding an accessible toilet in time, many people with IBD prefer to forgo social outings, cancel cultural activities or avoid professional commitments. This leads to progressive isolation and reduced social interaction, and sometimes even difficulties in maintaining employment.

Isolation, depression and issues with relationships 

Social isolation can develop into mental health issues such as anxiety and depression, as patients have to justify frequent absences or specific needs to those around them or to their employer. In the absence of understanding and support, this situation can seriously damage their mental well-being.

Access to toilets for people with IBD is not just a question of comfort, it is a question of human dignity. Having to justify a need as fundamental as going to the toilet is a form of symbolic violence for many patients. It puts them in a vulnerable position that is often misunderstood.

Not being able to access a toilet in case of emergency is much more than a temporary inconvenience. It represents not only a health risk, but also a social and ethical issue. Improving access to toilets for IBD patients is essential to preserve their quality of life, their mental well-being and their dignity.

How to make toilets more accessible for people with IBD? 

For people with chronic inflammatory bowel disease (IBD), quick access to a toilet is not a comfort, but a vital necessity. Fortunately, there are a number of solutions to make their daily lives easier and improve their quality of life.

“Can't wait” cards 

"Can't wait", "Just can't wait", "This can't wait" are all names of the different cards, that a person with IBD can get via an organisation such as Crohn's and Colitis UK, Guts UK or Bladder and Bowel UK. These cards enable people living with IBD to request priority access to toilets in shops, travel hubs, restaurants, public buildings, etc. To get your card, contact one of the organisations listed above, or another IBD charity you know. Some of the organisations require you to be a member in order to get the card for free.

Mobile apps that locate accessible toilets 

Digital tools are a great help. Mobile applications such as Flush - Public Toilet Finder, Where is Public Toilet, Toilet Finder, and others can be used to locate the nearest toilets, with important information in real time (cleanliness, opening times, accessibility). These apps take the stress out of travelling and give patients back some of their independence.

Local initiatives for improving public toilets 

IBD organisations across the UK are campaigning about improving access to public toilets for people with IBD. Contact your local branch to know more about what has been done in your area.

Local businesses and shops can also contribute: by allowing access to their toilets without obligation of purchase, they are helping to create a sense of local solidarity that is invaluable to sufferers.

Raising awareness among employers and public institutions 

It is important that the world of work becomes aware of the reality of IBD. Better recognition of invisible disabilities, the introduction of flexible working hours and the creation of clean accessible toilets in workplaces and institutions can greatly improve the professional inclusion of people with IBD.

Legal right for accessible toilets 

To date, there is no legislation guaranteeing a systematic right of access to the toilet for people with IBD, unlike people with visible disabilities or young children. Changing the law would tackle this issue.

The role of patient support groups 

Patient support groups and charity organisations play a key role, campaigning for better accessibility, informing elected representatives, raising public awareness and providing a safe space, both online and offline, for discussion and support. This collective work is essential to breaking down isolation, recognising invisible disabilities and changing attitudes.

In a nutshell 

For people living with inflammatory bowel disease (IBD), rapid access to a toilet is not an option, but a vital necessity.

All too often, this need is downplayed, even though it determines patients' mobility, their social and professional life, and their daily quality of life.

It is time to break the taboo and recognise that society needs to adapt: by increasing the number of accessible public toilets, raising public awareness about the invisible conditions such as IBD, and recognising the disabling nature of these conditions.

Solutions do exist: the ‘Can't wait’ card, mobile applications, local initiatives and the work of patient support groups and organisations. But these tools need to be more widely known and used to ensure true inclusion. 

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