For a young man with the Crohn’s disease food becomes a source of stress in the family (6 cases out of 10), causes unpleasant situations with friends (about 1 out of 2), complicates school (8 out of 10). So this one chronic bowel disease – which in Italy alone affects about 150,000,000 people, of which 25% diagnosed before the age of 20 – feeds the nutritional discomfort of patients, who especially in pediatric age and adolescence suffer from a limited social life (71%) and they feel marginalized by their peers (41%). This is the picture that emerges from the investigation by the EngageMinds Hub center of the Catholic University of the Sacred Heart, of the social campaign “Crohn we live – Stories of young people that Crohn’s disease cannot stop “, promoted by Nestlé Health Science – with the support of Modulen, food for special medical purposes for those with Crohn’s disease – in collaboration with the ‘Amici Onlus’ association.
The study, presented on the occasion of the World Day of Chronic Inflammatory Bowel Diseases (Mici) on May 19, highlights the strong impact of nutrition on quality of life (67%) and on everyday life (59%) of patients. “Food choices, especially in Italian culture, are an integral part of people’s quality of life and sociability and therefore strongly intertwined with psychology. Much of people’s identity is also expressed through the food they select and prepare: for those with Crohn’s disease being forced to give up or limit their diet is a source of great emotional frustration and risks compromising people’s sense of social inclusion and self-efficacy “, comments Guendalina Graffigna, director of the EngageMinds Hub center that has conducted the investigation.
Leading the way in the list of foods considered most problematic for those with cats are the spicy foods (76%), alcoholic (65%), fried (64%) e fast food (64%), in line with doctors’ recommendations. This lack of pleasure in food, due to restrictions, is also linked to the concern triggered by the intake of food considered dangerous, which can suddenly ‘run away’ to the toilet: 50% of people with Mici, in fact, confirmed that during the week prior to the interview had this kind of concern. As a result, people with Crohn’s disease feel the lack of being able to eat and drink like ‘anyone else’. 46% feel the protagonist of ‘unpleasant situations’ when sharing meals with their peers and more than half of the participants believe that managing family meals causes stress.
The other side of the coin that emerged from the survey concerns the relational aspect, strongly correlated to the nutritional one: in fact, in addition to the most problematic foods, biscuits, chocolate and confectionery products are listed among the foods on which it will ‘get wrong’ more easily: all common products on the table of teenagers and favorite snacks for school or with friends. Here, therefore, that nutritional discomfort is added to the factor of shame and marginalization, which 41% of the interviewees declare they perceive due to the disease, a sentiment also confirmed by 36% of parents “.
“The numbers show a strong psychological and social impact of the disease, which is increasing after the onset and diagnosis, which is around 17 years old: the same age as Diego Costi, a young man with Crohn’s disease actively involved in the campaign” CrohnViviamo ”And Bishop of the Italian Republic for his commitment in the nutrition field, alongside those who, like him, have the disease.
“Usually we talk a lot about the nutritional properties of various foods and their effect on a physical level, but often – underlines Salvatore Leone, General Director of Amici Onlus – it is overlooked that what we eat also contributes to nourishing the psychic sphere. Mind and food are closely interconnected and influence each other. The type of diet, in fact, determines not only our physical health, but also our mental health, our state of mind, the quality of our thoughts, and even our behaviors. Nutritional treatment is therefore fundamental in these patients, because – he explains – a correct diet serves to improve the quality of life and is part of the theme of the World Cat Day 2021, which is celebrated on May 19: ‘the well-being of the person suffering from IBD and the psychological impact of these pathologies’ “.
For a chronic inflammatory disease affecting the gut, nutrition is a crucial factor: about 70% of patients (and 77% of parents with children with Mici) said, in fact, to pay attention to nutrition and to follow a specific diet agreed with the gastroenterologist, who in 1 case 4 also recommends consulting a dietician or nutritionist. Furthermore, 6 out of 10 people declare that attention to the nutritional aspect has increased compared to the onset of the disease, an aspect also confirmed by 4 out of 10 parents.
“In considering the therapeutic aspects for the patient with Crohn’s disease, one cannot fail to consider nutrition, which is essential to keep the inflammatory pathology under control and avoid flare-ups of the same”, comments Antonella Diamanti, Head of Nutritional Rehabilitation at the Bambino Gesù pediatric hospital. of Rome. “Given the importance of nutrition, it is necessary to establish a continuous and effective communication between gastroenterologist, nutritionist and patient for, and to guarantee people with IBD access to timely and correct information, especially for young patients age”.
The primary source of information regarding IBD is the gastroenterologist, but only 28% of patients contacted him frequently, suggesting the research and appeal to other sources of information. Among these, the use of the internet stands out both among sick people (65%) and by parents (76%): 1 participant in 4 frequently searches for information about nutrition on the web and 38% does research online from time to time . The investigation reveals, then, that, despite the consultation of medical specialists, the diets that are carried out are the sum of the patient’s experience and a long process of trial and error.
The most significant knowledge gap at the doctor-patient level that emerges from the survey concerns Foods for Special Medical Purposes (Afms): the majority of participants (77%) declare that they have not received any recommendation or prescription for the use of Afms and 71% of doctors say they prescribe them only to some patients, especially in the acute phases of the disease. Despite this, those of the people with Mici who have used AFMS feel very satisfied, with an intake also in the maintenance phase, from which the importance of adding these products to the dietary regime is deduced.
“We have always tried to propose innovative nutritional solutions that have a therapeutic effect and allow to improve adherence to dietary therapy and bring benefits in the quality of life of patients”Declares Marco Alghisi, Beo Nestlé Italy and Malta. “With a broad portfolio of products active in the field of medical nutrition, we have at heart the development of Afms, such as Modulen for Crohn’s disease, based on scientific evidence, to enable consumers, patients and healthcare professionals who care for them. live a healthier life “.
As a further confirmation of the challenges and difficulties deriving from cats in adolescence that affect the social, family and school environment, the campaign “Crohn we live“Will continue with a qualitative-narrative survey in order to give voice to the stories and direct experiences of patients, to grasp the emotional impact of food sacrifices on everyday life and social relationships and to be at their side in trying to improve their quality of life.