“At 20, when I was diagnosed” with ulcerative colitis, “I didn’t understand what chronic disease meant. I learned the meaning of ‘forever’ the hard way,” says Mario, 45. At the beginning, says Lucia, 32, “I hated my body and my life. I spent my days in the bathroom,” “I couldn’t imagine having a social life, let alone a relationship. Despite the desperation, however, I felt a stronger need to move forward, to escape social isolation and embarrassment.” Carla, 53, echoes her: “I push myself beyond my limits to prove to myself that I’m normal,” “I lost many years because of the disease,” “I have a stimulating job, but my fears remain.” The full weight of living with the symptoms of a difficult disease is evident in the testimonies of patients with ulcerative colitis, released today at a meeting in Milan.
Their wishes? Simply “to live, to be with family” and “loved ones”, says Antonio, 43, whose disease “took a piece of intestine”. Ulcerative colitis actually takes even more: in the acute phase, in the hardest moments, it steals “happiness”, days of school and work. “I went to the bathroom up to 13 times a day and it was always an emergency – says Luca, 55 – It had become an obsession, as well as a limit to every aspect of social life”. Talking about it, explaining the disease, is also the first step to erasing the stigma that weighs on people affected by ulcerative colitis.
“At a certain point in the life of a boy, or a young adult between the ages of 15 and 30, an inflammatory process is triggered in the innermost part of the colon, ulcerations appear”, describe the specialists on the occasion of the announcement by the company Lilly on the green light obtained from the Italian Medicines Agency Aifa for the reimbursement of mirikizumab, the first antagonist of interleukin-23p19 for the treatment of active ulcerative colitis, from moderate to severe, in adult patients. A drug that selectively targets one of the crucial inflammation pathways in the development of the disease and aims to offer relief from key symptoms.
In Italy, over 150,000 people live with ulcerative colitis, many of them young (25% of diagnoses are under 18), an increasing impact. “The disease affects the person as a whole – explains Salvo Leone, general director of the patient association Amici Italia (National Association for Chronic Inflammatory Bowel Diseases) – it has symptoms that are difficult to describe, it pushes the patient into isolation. And this has repercussions on their work and school life. Often one has to take time off” due to the impediments of the disease and this “also means loss of productivity”. The disorders forcefully burst into daily life and also disturb “sleep”, rest. In fact, among the symptoms considered to have the most impact there is intestinal urgency. Urgency also at night, patients say.
A study (Confide, conducted by Eli Lilly) has explored and shed light on the experiences of people with ulcerative colitis, both in the US and in 5 European countries, including Italy. The data collected show that 73.9% of Europeans with the disease report having experienced intestinal urgency at least once a week in the 3 months before the survey (the other most common symptoms reported are diarrhea and increased frequency of evacuation), 37% confided that they had worn diapers, sanitary towels or protections at least once in 3 months. The urgency to go to the bathroom and the fear of accidents are the most frequent reasons for refusing to participate in social activities and more than one patient in 3 admitted that this urgency has negatively affected their school and work life.
“Family members are also affected,” continues Leone, who is also chairman of the European Federation of Crohn’s & Ulcerative Colitis Associations – Efcca, because they indirectly experience the consequences of this suffering experienced by their loved ones. “I believe that stigma is the result of not knowing – he reflects – it is important to talk about it by telling the disease to those who do not have it”, explaining what it entails. “We recently conducted a survey on a sample of 1,950 people: 70% had an impact on their working life and of these 6 out of 10 had to take periods of leave due to the disease”.
IBD is a growing problem, it cannot be ignored and must be managed as best as possible, warn the experts, Alessandro Armuzzi of the Humanitas Clinical Institute in Rozzano, professor of gastroenterology at Humanitas University, and Massimo Claudio Fantini, professor of gastroenterology at the University of Cagliari, Aou di Cagliari. “Inflammatory bowel diseases – reasons Armuzzi – were in the past decades diseases mainly of Europe, North America and Australia. In 20-30 years the epidemiology has changed a lot: in our world there is an increase in incidence, but now we see peaks at the level of the new industrialized countries, we see peaks in China, India, Brazil, where living conditions have changed. This makes us think that it is precisely here”, in these changes, “that we need to go looking” to understand the drivers of these diseases.
“There are hypotheses according to which an excess of antibiotics in early childhood can favor the onset”, list the two specialists. “Stress” is also a special observation and “that gut-brain axis that we now know exists”. There is an altered microbiota in patients with the disease. In short, more elements, reported by “many small studies, but – concludes Armuzzi – we still do not know exactly”.
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