Can’t Wait?
In the summer of 2010, the Crohn’s and Colitis Foundation of Canada (CCFC) conducted a survey to find out how bathroom access affects the lives of people living with inflammatory bowel disease (IBD).
Who Responded
Surveys were sent out to CCFC members, donors, volunteers, and our Facebook and Twitter followers. We received 1,384 responses from across Canada, from people who either suffer from IBD themselves or are supporting someone with IBD (such as a parent or child).
Highlights of the Findings
Humiliation
It should come as no surprise that three quarters of respondents have not only been embarrassed, but at times humiliated, when asking for permission to use bathroom facilities. It is no small thing to be in a panic over the urgent need to use a bathroom and then have to negotiate with someone for access to a toilet.
The concern about soiling oneself is not an overblown fear. Our survey told us that 44 per cent of respondents have experienced an accident because they have not been able to get to a toilet in time.
No one should have to experience that kind of humiliation.
Access to a Bathroom
Depending on the location, respondents had mixed success with gaining toilet access. Retail stores, grocery stores, convenience stores, gas stations and restaurants/cafés sometimes gave people permission to use their washrooms after negotiating for their use or if people revealed their diagnosis. However, there were also many places that denied people access to their bathrooms, even after an explanation was offered. Respondents also told us that shopping malls, schools and universities were usually good about providing bathroom access.
Lifestyle Changes
For someone who suffers from IBD, the lack of toilet access significantly alters their freedom and mobility. In fact, more than three-quarters of respondents told us that they chose to stay home when they are experiencing a flare-up, in case they can’t find a bathroom.
As a result, activities are often curtailed when flare-ups occur. This includes restrictions on sports, vacations, socializing with friends, shopping and entertainment. Travel for work can also be affected. Nearly three-quarters of respondents restrict their travel during a flare-up; 69 per cent avoid public transit and even shy away from driving in case an urgent need arises and no bathroom can be found.
Career
Career choices have also been shaped by fears over bathroom access. About one-third of respondents reported that their diagnosis has influenced decisions about the type of job they might have, the hours they can work, job-related stress and whether or not they can work full-time or part-time. Some decide to work from home, to ensure they always have access to a bathroom and privacy. All need to have flexible work hours with no set break times. Work that requires travel is often avoided. One particularly poignant response informed us that a greatly desired career in medicine was not feasible because the stress of the education and training, and her IBD, were an insurmountable mix.
Some have had to quit jobs they love because they cannot get away to a bathroom when the urge strikes. For example, nurses are not able to just walk out of the operating room and teachers cannot simply leave their students when they have to use the toilet. Instead of working in fields that were a passion, these individuals had to find work that gave them the flexibility to go to the bathroom. How would you like to make a career choice based on the availability of a toilet, rather than on your strengths and abilities?
Can’t Wait!
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CCFC understands the limitations that IBD imposes on many peoples’ lives and has done something about it.
In an effort to both reduce the feeling of isolation experienced by people living with IBD, and to raise awareness about this chronic disease so others will grant access to their bathrooms, CCFC developed an iPhone, Android and web application to help people find the public bathroom closest to them in a hurry.
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The Can’t Wait mobile application works in two ways: it uses GPS to track the user’s location and point to the closest bathroom; and it allows users to add bathrooms to share with the entire Can’t Wait community, their friends, or just for their own use. It is available as a free download through iTunes and the Google app store, by searching for Can’t Wait.
The web-based version of Can’t Wait is online at www.cantwait.ca. It allows users to search for a specific location in Canada and find public bathrooms either en route or close by. Users can also link to both versions through www.ccfc.ca. Can’t Wait users have inputted over 1,300 bathrooms right across Canada so far, and CCFC urges new users to input bathrooms they know are accessible to the public. The application also allows users to list bathroom hours and any information that makes access easier, such as whether a key is required.
Living with IBD can be a challenge. It can restrict your freedom, your mobility, your activities, even your career choice because you can’t find a bathroom when the urge strikes. While there is no cure yet for IBD, CCFC is committed to helping you learn more about your disease, and to support you in ways that give you back that freedom.
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