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The urgency for going to the bathroom can generate anxiety and fear of incontinence and limits the social life of many people suffering from an II as ulcerative colitis or Crohn’s disease. In order for society in general, to understand the fear and anguish that those who suffer from this pathology feel in their day to day, Lilly and the Acu Spain have launched ‘Urgence Room’, an initiative that will travel through different Spanish hospitals.
Antonio Valdivia had to wait four years until they could diagnose Crohn’s disease. I was studying high school at the institute and was going through a situation of bullying. “That moment I remember it as the worst, the symptoms were completely uncontrolled, I had a very large weight loss and I could not make normal life. Between second and fourth of ESO I attended as two months to class and the times I had to attend, as I had periods of incontinence, I had to go with diapers when I left home”recalls Antonio Valdivia, current director of the Confederation of Associations of Crohn patients and Ulcerative Colitis of Spain (ACCU SPAIN).
THE IMPACT OF EII
EII is a disorder that produces chronic inflammation of the digestive tract. III includes two main pathologies: ulcerative colitis (CU), which is characterized by the inflammation of the mucosa of the colon and rectum, and the Crohn’s disease (EC)which can appear in any region of the digestive tract from the mouth to the anus, affecting all the layers of the gastrointestinal wall. Both diseases cause different symptoms such as abdominal pain, diarrhea, fatigue, urgency and weight loss. “In the case of ulcerative colitis, diarrhea with blood is the main symptom and in the case of Crohn’s disease, diarrhea and abdominal pain”explains the Dr. María Dolores Martín Arranz, Chief of Digestive Service at the La Paz University Hospital, Associate Professor of Medicine of the UAM and IDPAZ Researcher.
Among the main symptoms, in addition to the pain or fatigue that can hinder everyday tasks, is the urgency, which supposes an immediate need to go to the bathroom that can generate anxiety and fear of incontinence. This urgency limits the lives of many patients when participating in social, work and personal events. “Blood diarrhea limits life, many patients have to run to the bathroom or have the feeling that they cannot wait, even some have to carry compresses or diapers in their day to day”declares the doctor. It is not always easy to find a public bathroomthere are train stations in which you have to pay or hospitality sites where the bathroom is exclusive for customers. “We have very little room for maneuver, it limits us many times when leaving. Something very common in the periods in which we are worse, is to have a mental or digital map of our tour with the places where we know that there is a bathroom nearby”.
This causes these symptoms to be highly disabling and have A great impact on the quality of life of those who suffer from any of these pathologies. The urgency, fatigue and pain lead to many patients to restrict their participation in social, work, sports and sexual activities. “One of the most disabling symptoms we have is fatigue, an extreme fatigue that we are dragging and also affects productivity and that makes us find it difficult to concentrate many times”indicates the patient.
EII also has A strong psychological impact in those who suffer from it, causing anxiety, depression or social isolation in some cases. The director of ACCU Spain reveals that “it is an invisible pathology, we drag that emotional impact that is often difficult to manage and transfer your friends, your partner or the family.”
These pathologies have always been taboos in society and are not openly spoken of them. As Dr. Martín Arranz reveals, “It is difficult for a young person to assume that he suffers from chronic pathology and that for life will have to be in monitoring and with treatment.”. Once the diagnosis has been received, the patient is informed about the approach with hospital drugs for life and that adherence to this is fundamental. Also, in some patients it is possible to control the disease optimally, but others must be changed several times and that psychologically impacts them. Antonio claims that patients may have a more active role in its treatment, “Talk about you to you and manage both the approach to a pathology that is what we are going to live together in the end”.
On the other hand, although there is no specific diet for this type of pathologies, the doctor recommends “A healthy Mediterranean diet, and in patients who have stenosis (narrowing of the small intestine), we restrict fiber. In addition to abandoning the smoking habit, especially in Crohn’s disease, which is clearly related to worse prognosis, more surgeries and worse response to treatment”points out the doctor.
THE INITIATIVE ‘URGENCY ROOM’
According to ACCU Spain data, in our country It is estimated that about 0.7% of the population has an IIwhat would be about 360,000 people. Therefore, one of the great objectives is to increase the conscience of the general population about these diseases to improve an early diagnosis and find the right treatment. Since Lilly, in collaboration with ACCU Spain, they have launched an awareness initiative: ‘Urgency Room’. This search make visible the impact of EII symptoms and improve social knowledge and empathy. The activity consists of a room where participants will experience in the first person the feeling of urgency, overwhelming and insecurity that these patients feel when they need to find a bath quickly.
The scenario simulates a bathroom with three different doors and with which the participant must interact. During action They will face three tests They seek to transfer the similarity with the real world, meeting damaged, dirty, busy bathrooms … in these tests key messages will be transmitted on the three most representative symptoms of the disease: Emergency, fatigue and pain. Depending on whether the bathroom available or not, a video or other will be reproduced, but without a doubt the participants can suffer in their own meats what a person with EII feels when he has the urgency of going to the bathroom and cannot access it. “With this initiative we want to make visible that feeling of anguish and fear that we can feel and understand that if we ask for access to a fast bathroom is a necessity”adds Valdivia.
In addition to this action, Lilly, in collaboration with ACCU Spain, has launched the Report “Perception and reality of intestinal inflammatory disease (EII)”a social perception study conducted by Ipsos to know the degree of knowledge of the population about these pathologies. These are the main conclusions of the report:
Make visible and raise awareness about EII
There is still a lot of work to make awareness and research. “The trigger for each outbreak is not clear, sometimes it can be after an episode of infection, to abandon treatment or relates to situations of important stress”argues the head of digestive system at the La Paz University Hospital. The great challenge of the professionals of this pathology is to continue finding drugs that help them control it and with the least possible effects on patients, in addition to find the best treatment for each patient.
Antonio Valdivia believes that visibility and awareness are necessary for “We will not find impediments in our life such as going to a medical appointment, you harm you work or educationally, simple situations such as letting us access a bath or moments in which we are with that fatigue, we have the opportunity to telework as much as possible.”. To be able to put ourselves in his shoes, the initiative ‘Urgence Room’ will travel different Spanish hospitals to simulate a situation that these patients live on a day -to -day basis.