You are out on a Saturday night and you feel a very strong urge. No public restrooms in sight. You then rush into the first bar you come across and notice the huge queue in front of the bathroom door (in addition to the remark from the boss demanding that you drink). Beads of sweat bead down your temples and cramps begin to paralyze you. Soon, you can no longer hold yourself back. Does this situation seem very uncomfortable to you? Now imagine having to experience it ten times a day. This is the daily life of people with ulcerative colitis (UCH) and Crohn’s disease, inflammatory bowel disease (IBD).
“Crohn’s disease is a gastro power ten”, summarizes Sylvie Monboussin, affected by this pathology and volunteer at theAFA Crohn RCH. This chronic inflammation can affect any part of the digestive tract, from the mouth to the anus. UC is characterized by blood in the stool and inflammation localized to the rectum or even the colon. These pathologies usually begin between the ages of 15 and 30.
Taboo diseases
Because they affect the intestine and therefore faeces, a major taboo in our societies, IBD are hidden diseases. “In our civilisation, saying, at dinner or at the coffee shop, ‘today I had 6 stools’, is not well accepted”, acknowledges Sylvie Monboussin. Even with his relatives, it is difficult to talk about his haemorrhages, his frequent and imperious diarrhea and his immense pain caused by inflammation. “People think it’s dirty. So we don’t talk about it. »
But questions sometimes come to the sick. “During a surge (of activity), we don’t eat like the others,” explains François Blanchardon, suffering from Crohn’s disease and deputy director of the AFA Crohn RCH. This may raise questions. “In my adolescence, I often refused outings for fear of not being able to eat like everyone else and of having to explain myself,” recalls Sylvie Monboussin. “We don’t always find the words to explain. And we don’t always want to explain. It is also part of our intimacy. »
A lack of public toilets
These illnesses, which are part of an invisible handicap, are not taken into account in the public sphere. First example: accessibility to sanitary facilities. “When I was young, I canceled evenings for fear of not finding a toilet,” testifies Sylvie Monboussin. And for good reason: France has only one public toilet for 4,610 inhabitants, according to the report on “The right of access to toilets in France” of the Water Academy published in May 2020. And this equipment is very uneven depending on the city. If Paris has one toilet for 3,000 people, Marseille had only one for 48,000 people in 2019. That is only 18 public toilets in the entire Marseille city, for nearly 900,000 inhabitants.
In the absence of public toilets, patients sometimes have to enter businesses to request access to their sanitary facilities. And are not always well received. In January 2021, in the midst of the Covid pandemic, a woman with Crohn’s disease was refused access to the toilets of the supermarket in which she was, despite her priority card. “Everything ‘left’ in the parking lot. I was in tears in front of my car and soiled to the boots, ”she explained to Republican East. To avoid this type of humiliation, some patients refuse outings and gradually isolate themselves.
A risk of social isolation
“You can very quickly lock yourself in without realizing it and prevent yourself from going out,” confirms Sylvie Monboussin. “People discovered confinement two years ago but for us it is a daily reality”, summarizes François Blanchardon. An isolation that is not without consequences. One in three sick people report having had difficulty having a love life, according to a study by the AFA.
Many patients are young, “in full construction of their life and their bodies, recalls Sylvie Monboussin. There is a real need for support with kindness and non-judgment. “If we cannot cure these diseases for the moment, associations are finding solutions to improve the daily lives of people who suffer. The app Where are the toilets ? lists all the public toilets near our position. The toilet emergency card put in place by the AFA allows easy access to sanitary facilities without having to consume. And to give more visibility to these too often hidden diseases.