6 out of 10 young people with Crohn’s disease want to eat “like everyone else”
For a young person with Crohn’s disease, food becomes a source of stress in the family (6 cases out of 10), causes unpleasant situations with friends (about 1 in 2), and complicates school (8 out of 10). Thus, chronic bowel disease – which affects about 150,000,000 people in Italy alone, 25% of whom were diagnosed before the age of 20 – feeds the nutritional discomfort of patients, who suffer for life especially in childhood and adolescence (limited social status (71%)) and feel marginalized By peers (41%). This is the image that emerges from the survey, conducted by the EngageMinds Hub of the Catholic University of the Sacred Heart, of the social campaign “Crohnviviamo – Stories of Young People That Crohn’s Disease Can’t Stop”, promoted by Nestlé Health Science – with the support of Modulen, food for special medicinal purposes for whom Suffering from Crohn’s disease – in cooperation with the association “Amici Onlus”. The study, presented on the occasion of World Chronic Inflammatory Bowel Disease (Mici) Day on May 19, highlights the powerful effect of nutrition on quality of life (67%) and daily life (59%) of patients. “Food choices, especially in Italian culture, are an integral part of people’s quality of life and social integration, and are thus closely intertwined with psychology. Much of a person’s identity is also expressed through the food they choose and prepare: for people with Crohn’s disease, who They are forced to abandon or limit their diet is a source of great emotional frustration and risks threatening people’s sense of social inclusion and self-efficacy, ”comments Guendalina Graffigna, director of the EngageMinds Hub who conducted the survey. Spicy foods (76%), alcoholic (65%), fried (64%) and fast food (64%) top the list of foods considered most problematic for those with cats, doctors ’recommendations. This lack of food pleasure, due to restrictions, is also associated with anxiety caused by eating considered dangerous food, which could suddenly “ run away ” to the toilet: in fact, 50% of people with Mici confirmed that during the week before the interview he had That kind of anxiety. As a result, people with Crohn’s disease feel unable to eat and drink like “anyone else”. 46% of respondents feel that they are the protagonist of “unpleasant situations” when sharing meals with their peers, and more than half of respondents believe that managing family meals is stressful. The other side of the currency that emerged from the survey concerns the relational aspect, which is closely related to the nutritional aspect: in fact, in addition to the more problematic foods, biscuits, chocolate and confectionery products are included among the foods that will be included in them. Understand the mistake “more easily: all the common products at the teen table and favorite snacks for school or with friends. Here this nutritional discomfort adds to the shame and marginalization factor, with 41% of the respondents saying that they see it because of illness, a feeling also confirmed by 36% of parents.” “The numbers show a psychological and social impact.” Strong from disease, which increases after its appearance and diagnosis, and who is about 17 years old: the same age as Diego Costi, a young man with Crohn’s disease actively participating in the “CrohnViviamo” and Standard Bearer campaign of the Italian Republic, his commitment to nutrition, along with those with the disease like him. “Usually we talk a lot about the nutritional properties of different foods and their effect on the physical level, but all too often – asserts Salvatore Lyon, General Manager of Amici Onlus – it is overlooked that what we eat also contributes to nourishing the psychological sphere. Mind and food are closely related. In fact, the type of diet determines not only our physical health, but also our mental health, the state of our minds, the quality of our thoughts, and even our behaviors.Therefore, it is essential in these patients, to explain – the correct diet improves the quality of life and is part of the topic of the day. Global Messa 2021, celebrated on May 19: “ The well-being of a person with inflammatory bowel disease and the psychological impact of these diseases. ” For chronic inflammatory diseases of the intestine, nutrition is a critical factor: about 70% of patients (and 77%) Of parents who have children with Mici) said, in fact, paying attention to nutrition and following a specific diet agreed with a gastroenterologist, who also recommends in one case 4 consulting a dietitian or dietitian. In addition, 6 in 10 people declared that interest in the nutritional aspect increased compared to the onset of the disease, an aspect that was also confirmed by 4 in 10 parents. “When considering the therapeutic aspects of a patient with Crohn’s disease, it is impossible not to think about nutrition, which is essential to keep inflammatory pathology under control and to avoid disease flare-ups,” comments Antonella Diamante, Head of Nutritional Rehabilitation at Bambino Gesu Children’s Hospital in Rome. “Given the importance of nutrition, it is essential that there be constant and effective communication between the gastroenterologist, the dietician and the patient, ensuring that people with Mici have access to the right information at the right time, especially for patients at a young age.” The main source of information regarding IBD is a gastroenterologist, but only 28% of patients contact him frequently, indicating research and appeal to other sources of information. Among these, Internet use stands out among patients (65%) and parents (76%): 1 participant in 4 people frequently searches for information about nutrition on the web and 38% does a search online from time to time. The investigation reveals, then, that despite consulting with expert physicians, the meals made are the outcome of the patient’s experience and a long process of trial and error. The most important knowledge gap at the physician and patient level emerges from the survey related to foods for special medical purposes (Afms): the majority of respondents (77%) acknowledge that they have not received any recommendation or prescription for the use of Afms and 71% of physicians say they prescribe it only for certain patients, especially in Acute stages of the disease. Despite this, people with Mici who have used AFMS feel very satisfied, taking them also in the maintenance phase, during which the importance of adding these products to the diet is deduced. “We have always tried to suggest innovative nutritional solutions that have a therapeutic effect and allow us to improve adherence to nutritional therapy and bring benefits to patients’ quality of life, ”said Marco Algeci and Pio Nestlé Italy and Malta. Active in the field of medicinal nutrition, we are interested in developing Afms, such as Modulen for Crohn’s disease, based on scientific evidence, to enable consumers, patients and healthcare professionals who care for them to lead healthier lives. ”As a further confirmation of the challenges and difficulties arising from cats in adolescence. Affecting the social, family and school environment, the “Crohnviviamo” campaign will continue with a qualitative narrative survey in order to give voice to patients’ stories and direct experiences, to understand the emotional impact of food sacrifices on daily life and social relationships and to stand by them in an attempt to improve their quality of life.