by Livia Gamondi
These are pathologies that can manifest themselves at any age, even pediatric, but generally the diagnosis arrives in the prime of life, between 20 and 30 years of age.
They are invisible, but they have a strong impact on the lives of approximately 255 thousand Italians and almost 7 million people around the world. They are IBD, Chronic Inflammatory Intestinal Diseases. These are pathologies that can manifest themselves at any age, even pediatric, but generally the diagnosis arrives in the prime of life, between 20 and 30 years of age. And they are growing, in fact in the last 10 years, the diagnoses of new cases and the number of patients have increased by approximately 20 times. The data from the observational IBD – PODCAST study conducted in 10 countries, including Italy, from the ACQUIRE-IBD survey on more than a thousand patients were recently presented, in addition to the results of the IX research on knowledge and perception of IBD in the Italian population, where the ’87 percent say they have heard of it. The evidence indicates that, out of 220 Italian patients, 54 percent of those with Crohn’s disease and 49 percent of those with ulcerative colitis are not optimally controlled. The ACQUIRE -IBD survey shows that over 70 percent consider the support of patient associations to be important in the management and acceptance of the disease.
They are diseases that are not seen, but which cause disabilities and have a major impact on personal and working life. The stigma within the work environment is strong, particularly when the disease is active and gives no respite and it is necessary to go to the bathroom up to 15 times a day or be forced to work from home. Often resulting in an impact on income.
Crohn’s disease and ulcerative colitis affect the gastro-intestinal system and have a chronic-relapsing pattern, alternating periods of remission with others of exacerbation. Chronic intestinal inflammatory diseases arise from a response against bacteria that lead to inflammation and have a certain familiarity, in fact, they tend to appear more frequently in family members of people who are affected. These are highly disabling pathologies that manifest themselves with symptoms that often frighten the patient and family. Many diagnoses, in fact, occur after the patient goes to the emergency room following acute symptoms – declares Massimo Fantini, Director of the Complex Gastroenterology Structure of the University Hospital of Cagliari which hosts the Center for research, diagnosis and treatment of IBD—. Early diagnosis is of fundamental importance as it can limit the impact of the disease on people’s lives, not only from a physical point of view, but also emotionally and economically.
The symptoms are overlapping and some are very evident: such as urgent bowel movements, rectal bleeding, and abdominal pain. From the appearance of the first symptoms to the diagnosis, up to 5 years can pass, although in most cases, the diagnostic delay today is less than 6 months and is different between ulcerative colitis (shorter) and Crohn’s disease (often longer). And this leads to a slowdown in the prescription of available therapies and to limiting the damage. Today, the objectives of treatment are focusing on clinical remission, on the “healing” of the intestinal mucosa, and on the absence of disabilities, improving the quality of life without having to resort to surgery – underlines Alessandro Armuzzi, Head of the Operational Unit of IBD Chronic Inflammatory Bowel Diseases at IRCCS Humanitas Clinical Institute. Over the last ten years we have witnessed a real revolution in the management of IBD. We must continue to commit ourselves to improving knowledge, with particular regard to the warning signs that should lead the patient to a gastroenterologist specialist. For people with IBD, it is important to understand that managing symptoms alone does not change the course of the disease. Mucosal healing means the restoration of the intestinal lining and is associated with better clinical outcomes, such as longer-lasting remission and a lower risk of surgery.
In addition to physical symptoms, IBD has an impact on people’s well-being and in this regard investigations have been conducted in Europe and Italy. From these it emerges that 71 percent of those interviewed with Crohn’s disease are worried about the appearance of flare-ups, approximately 40 percent have made changes to their working life, asking for smart-working and that in Italy 23 percent of patients with Crohn’s disease and 26 percent of Ulcerative Colitis patients report a loss of work productivity. The Patients Association plays a key role in generating awareness of the disease. In fact, the majority of patients declare the importance of support groups to support people in managing the disease, concludes Salvo Leone, General Director of AMICI ETS, National Association for Chronic Inflammatory Bowel Diseases. Attention must remain focused on timely diagnoses, increasingly appropriate and personalized treatment paths that take into account the chronic condition. It is therefore essential to guarantee support, including psychological support, to this community of invisible patients who have the right to the best possible quality of life.
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February 9, 2024 (modified February 9, 2024 | 09:07)
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