2023-11-17 11:15:00
On the occasion of World Toilet Day on November 19, the AFA Crohn RCH France association is speaking out to raise awareness regarding the lack of toilets in public spaces and transport in France, a source of anxiety and isolation for people suffering from “toilet emergencies”.
MICI: what are we talking regarding?
“These are Crohn’s disease and ulcerative colitis,” explains Professor Xavier Treton. “They progress in crises called flare-ups, and cause chronic inflammation of the digestive tract. What distinguishes them is the depth of the inflammation, superficial in Ulcerative Colitis, which exclusively affects the colon, and deeper in Crohn’s disease, which can affect several segments of the digestive tract. »
IBD is on the rise, particularly among young people. “The first symptoms appear most often between the ages of 20 and 35. »
Disabling symptoms
For Professor Xavier Treton, the main symptoms of ulcerative colitis “take the form of abdominal pain, diarrhea, the presence of blood and/or mucus in the stools, and irrepressible urges to have a bowel movement. For Crohn’s disease, we can add more intense abdominal pain, damage to the anus including wounds or abscesses. »
“IBD can cause extra-digestive manifestations: inflammation in the eyes, joints and skin. Finally, these two diseases are the cause of debilitating chronic fatigue. Sometimes the severity of IBD, more particularly Crohn’s disease, can cause severe complications: abscesses or obstructions of the digestive tract which can lead to hospitalization and surgical treatment, sometimes urgently,” adds the Teacher.
Support in constant progress
Since the 2000s, numerous advances have made it possible to improve the management of IBD. Professor Xavier Treton explains that “today the objective is as much to control the symptoms in the short term as to obtain healing of the intestinal mucosa in the long term. This reduces the risk of complications and the need for surgery. Therapeutic alternatives are being developed to enable the treatment of patients who need them. »
“Finally, within a few years, we are hopeful of being able to offer complementary nutritional approaches to therapeutic care, in order to obtain longer remission and space out attacks. »
Four questions for Corinne Devos, president of the Afa Crohn RCH France association
What are the daily consequences of IBD?
Corinne Devos “The symptoms of IBD impact, often invisibly, the daily lives of patients but also their self-esteem, particularly among young patients in the midst of a period of construction. These are taboo illnesses because they affect the intimate, and the difficulty of talking regarding them can lead to isolation.
People suffering from toilet emergencies may also experience anxiety if they are unsure whether they will have access to a toilet during their journeys or trips. »
What have you put in place to support patients and make their daily lives easier?
Corinne Devos “Our goal is to support sick people, but also their loved ones, in all their issues related to their care journey or their daily life. We offer services and tools (online or in person) for support, information and support adapted to everyone: food, rights, education or professional life, listening and psychological guidance, etc. The concerns are numerous and also vary in depending on age and progression of the disease.
It is important to specify that Afa is present throughout France, in mainland France and overseas, with teams of volunteers mobilized on the ground to inform and support patients and their loved ones. »
You are mobilizing for World Toilet Day on November 19, specifically what are you putting in place?
Corinne Devos “Afa has been engaged on this issue for several years. In France, the lack of toilets in public spaces and transport is a real problem for our patients, but more generally it is a public health issue that concerns us all!
We have created the “Emergency Toilets” card which allows patients to more easily access toilets when traveling. We are also partners of the “Where are the toilets?” application. » (toiletfinder), which references the partner establishments of the “Emergency Toilets” Card. »
And beyond these solutions for patients, how do you raise awareness among public opinion and public actors?
Corinne Devos “World Toilet Day allows us to raise awareness among public opinion but also among those involved in public life. We inform and ask town halls and catering federations to sign agreements, with the aim of opening the toilets to people holding the “Emergency Toilets” card and more generally to implement solutions for everyone.
World Day is finally an opportunity to highlight our Urgence Toilettes petition which has 35,000 signatories, but also to offer exciting general public conferences online or in person! »
To find out more, see the AFA Crohn RCH France website.
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#listen #recognize #patient
