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“I’m afraid of being away from a toilet”: inflammatory bowel disease patients speak

Author: José Luis Zafra. “When I start teaching as a teacher, the first thing I do is let my students know that if I say I’m leaving, I’m leaving. And all my students know what I mean perfectly. ”The speaker is Jaime Bartolomé, screenwriter, stand-up comedian and teacher of different cinematographic disciplines. From his 21 years suffers from Crohn’s disease, a pathology that, together with ulcerative colitis, make up the group of inflammatory bowel diseases (IBD) and they have been diagnosed in around 2.5 to 3 million people in Europe.

IBDs are immune-mediated, inflammatory, and chronic diseases that affect the body’s ability to absorb nutrients from food. Some of the most common symptoms are tiredness, abdominal pain, loss of appetite and weight, fever and, as Bartolomé has described on his Twitter account, fecal incontinence and diarrhea.

The quality of life of adults and children with IBD is worse than that of healthy people. These diseases affect their education, employability, ability to socialize and other interpersonal attitudes

IBD patients live with a reality that for many people is taboo: they need to have a toilet available at all times. Most people prefer not to have to evacuate in a toilet outside their home, but people with IBD have no choice.

In the case of Bartholomew, this dependence on the toilet has shaped his life since he was diagnosed with Crohn’s disease. In her twenties she had to stop drinking alcohol, something that, according to SINC, “can affect your social relationships at that age” and she explained her condition to her partners as naturally as possible. “I suppose,” he points out, “that I have lost a girlfriend for speaking so plainly, but if you disgust poop, I am not your ideal partner.”

Now, after being married for ten years, he says that the bars in his neighborhood do not give him any problem if he needs to use the toilet. He even shares a friendship with a physiotherapist of whom he began as a client and is now his friend “by dint of sharing adventures of this type.”

The scientific literature recognizes that the quality of life of adults and children with IBD is worse than that of healthy people. A meta-analysis from 2018 offers robust evidence that the impact of these diseases affects their education, employability, socialization capacity and other interpersonal attitudes such as sexuality, intimacy and personal satisfaction.

On the other hand, the statements of a qualitative research published in 2012 highlight the importance of the public toilet for this population. Some examples: “I am always afraid of being too far from a bathroom”, “I map the toilets in this city and I know where everyone is”, “if there was some magic potion that would make me not go to the bathroom 20 times a day and not have four accidents a night, I would take it without a doubt ”.

The survival strategy of these patients depends on the toilet and, if there is no bathroom available in one place, they do not go to that particular place.

Most people with intestinal diseases share a feeling of frustration at being dependent on a toilet and having a disease that makes it impossible for them to control their needs. And to this frustration is added that public toilets do not always meet minimum privacy, security and accessibility standards, which further delves into the psychological impact.

Rating public restrooms: the first step

The psychologist Guido Corradi, a researcher at the Department of Psychology at the Camilo José Cela University, has developed (together with his faculty partner Eduardo García-Garzon and Juan Ramón Barrada, a colleague at the University of Zaragoza) a scale to measure the perception of public toilets. An issue that he, as an ulcerative colitis patient, cares about personally.

This work is not only unusual for him, since his previous research is directed towards the psychology of morals, aesthetics and visual preferences; but for the scientific community. “In other fields you always find the reference articles, you pull that thread and you keep arriving. But this didn’t exist here, so I decided to jump into the river, ”he explains to SINC.

According to Corradi, health psychology does not attach much importance to public toilets because there are more relevant topics for people with chronic IBD and because “there is a certain taboo, it is not considered ‘cool’ to investigate it”

According to Corradi, the scientific community of health psychology has not attached much importance to public toilets “because they have dealt with other issues that are also relevant for people with chronic IBD.” “Questions about the impact of public toilets on mental health exist, but they have never been given the attention they deserve because, in my opinion, there is a certain taboo, it is not considered ‘cool’ to be investigated,” he says.

The Public Restroom Perception Scale (PBPS) collects 14 qualifying characteristics about these facilities, encompassed in three domains: privacy, ease of use and cleanliness. Thus, Corradi’s research offered the participants of a survey on how much importance they gave, from 1 to 5, to a series of statements: that the bathroom has the possibility of closing the doors properly, that it does not make me feel exposed, that have everything I need, that does not have stains, and so on.

This research found that people who are most dependent on the toilet (with an ISS or some other condition) value the privacy and cleanliness of public toilets more highly compared to a sample of healthy people.

Why didn’t ease of use seem to be affected? “We believe that people dependent on the bathroom always go with our kits with which we can compensate for the situation: paper, hydroalcoholic gel, wipes …”, says Corradi. Privacy, a domain that is important for IBD patients, is not something that can be replaced: “We would all love to have a latch, a door that covers you or something to compensate, but it is impossible.”

Despite the fact that this research responds to the needs of a specific population – dependent and prone people to go to the bathroom, whether with IBD, another pathology or none -, which suggests that it would be an applied research work, Corradi he acknowledges that he comes from the world of basic psychology and whenever he is asked about a possible transfer of knowledge from the paper to the street, “it makes me a little nervous because it is not part of my research tradition.”

But this novel scale, which touches him personally and almost the entire population with IBD, will find applications. “It may be – he indicates – the first step in developing a satisfaction survey with public toilets”, which could provide very precise information on what is wrong and what is right in a city’s public toilet network.

“Urban kits do not meet minimum standards of dignity for us. In this sense, we are developing new studies to see the impact this has on daily life and on the quality of mental health of people dependent on toilets ”, the researcher advances.

It not only impacts people with intestinal diseases

On the other hand, the scale designed by Corradi found a gender effect: that women attach much more importance to the quality of public toilets than men. According to the psychologist, this is added to the extensive scientific literature that the built spaces, such as offices or public bathrooms, “are not adapted to the needs of women or, on the other hand, of people with some pathology.”

A recent investigation, conducted through a cross-sectional questionnaire to 6,004 women about their bathroom use habits, found that 26% of the participants avoid having to go to the public toilet and allege reasons for lack of cleanliness, availability of equipment and privacy. This has a direct impact on your health: those who avoid going to the toilet have more bladder problems, according to other research in urology.

Women attach much more importance to the quality of public toilets than men

This is precisely one of the central points to commemorate World Toilet Day by the UN. The toilets and the availability of hygienic bathrooms help women and adolescents to experience their menstruation with safety and dignity, especially in those areas where the period is experienced as something discriminatory.

People who identify as part of a sexual or gender minority (trans, queer, intersex, etc.) also show reluctance to use public toilets. The main reason expressed by these groups, according to qualitative research, is that the culture of associating a bathroom with a specific sex can pose a risk to their gender expression in what is considered the cisheteronormative. This ends up affecting, as in the case of women, their willingness to go to the bathroom and therefore their health.

Toilets in means of transport

But Jaime Bartolomé goes further and says something invisible obvious that does not affect only people with IBD: “Anyone can suffer from gastroenteritis and have diarrhea with a little poisoning.” It is for this reason that he describes the situation of public toilets in Madrid, where he lives, as “an amazing scandal.”

“If the institutions ask us to use public transport, we need a bathroom in transport. It cannot be that the City Council [de Madrid] have a network with only 20 toilets installed in random corners or that 150 Cercanías units, which they call ‘dodotis’ [en referencia a la marca de pañales], do not have bathrooms, “he criticizes.

This is why one of the criteria you use to get around Madrid by car is when you feel unwell. “Why? Because in the trunk I have a bucket, paper, cleaning supplies and that’s it. But if I get on a subway, I don’t know what will happen ”.

Sharing testimonies, the great support to face the disease

Crohn’s disease and ulcerative colitis are usually identified between the ages of 15 and 30, critical ages for adolescents, who are still building their personality, as well as for young adults, in the middle of the socialization stage and at the entrance to the labor market . According to ACCU, the confederation that includes the Crohn’s and ulcerative colitis associations of Spain, the best way to cope with negative emotions after diagnosis is to share the testimony with other patients with IBD.

“It cannot be that the Madrid City Council has a network with only 20 toilets installed in random corners or that 150 suburban units do not have toilets,” criticizes Bartolomé

For Corradi, this experience he had (and continues to have) in his visits to the day hospital and in the qualitative preparation of his article. “Small informal communities with which you talk, debates, emerged,” he says. As a researcher it was curious because, when I began to read other articles, I connected my own experience with that reported in the papers on mental health ”.

It also has that once he published the conclusions of his work, he received many messages from people with IBD that they had found “words to what they had been suffering all their lives”, making visible an obvious: that all people with these pathologies need to have a toilet.

It is for all this that his research has not been confined to a purely academic field, but has been a “curious and quite wonderful” experience: “I am left with the idea that what happens to me not only happens to me, I am not alone ”.

This article was originally published in Agencia Sinc

The article “I’m afraid of being away from a toilet”: inflammatory bowel disease patients speak was published in Explica.co.