When, at 15, 20 or 25, someone learns that he will have a disease for life, the information is not easy to manage. And when the pathology in question has a high disabling aspect, acceptance is even more complicated. That is why, as Ana Sampaio says, it is essential to guarantee nutritional and psychological support to overcome the initial fear. At the Portuguese Association of Inflammatory Bowel Diseases (APDI), of which he is president, consultations are available with psychologists and nutritionists, with great knowledge of Crohn’s disease and ulcerative colitis, who help patients to overcome the most difficult stages.
The head of the association, herself a carrier of Crohn’s disease, knows firsthand the difficulties of living with this diagnosis. Twenty-two years ago, when he heard the news, the outlook was far less encouraging. “It used to be very common for people to know that every five or ten years they were going to have surgery, but not anymore.”
Today the reality is very different and despite the diagnostic difficulties, the therapies are less aggressive and guarantee a better quality of life. “I usually tell young people who are diagnosed today that they don’t know what Crohn’s disease or ulcerative colitis was before 2000. It was really quite painful”, reinforces Ana Sampaio, who remembers the day when she first visited the association he chairs today. “I saw other colleagues’ stomachs full of scars, but they all had a smile on their face.”
The new therapies guarantee a better quality of life and avoid the frequent operations that patients had to undergo.
Demystifying these diseases and ensuring better information for the population was also the objective of the conversation that brought together Ana Sampaio and Paula Lago, gastroenterologist at the Centro Hospitalar e Universitário do Porto (CHUP), held yesterday, date on which the International On celebrates Inflammatory Diseases Day, and which you can see in full on the Diário de Notícias website. It was also the first of the cycle “Dialogues: health and future”, an initiative of the newspaper in partnership with AbbVie.
More effective therapies and 100% reimbursement
But what, after all, are IBD? “We are talking about two inflammatory diseases – Crohn’s disease and ulcerative colitis – which affect the digestive tract”, explains Paula Lago. But, although they are part of the same group of pathologies, the two diseases are distinct, since the first can affect the entire digestive tract, from the mouth to the anus, while in ulcerative colitis, the inflammation affects only the large intestine, with inflammation that manifests as sores inside the digestive tract. In common, they have difficulty in diagnosis.
The first symptom is usually frequent diarrhea. “More than three days with diarrhea and several trips to the toilet, with abdominal pain and some associated fatigue should be warning signs”, explains Ana Sampaio. However, in some rarer cases, there are people for whom the first sign that something is wrong is constipation, loss of appetite and weight loss. Symptoms that are often confused with other pathologies because “inflammation can also affect extra-intestinal organs in up to 30% of cases and can even be the form of presentation of the disease”, specifies the president of the APDI.
“There is a heterogeneity of manifestations and diagnostic methods”, reinforces Paula Lago, who adds: “The main diagnostic tool is endoscopic examination of the digestive tract, colonoscopy as first-line examination after completion and exclusion of stool infections. collection.”
Currently, experts estimate that there are around 25,000 patients in Portugal, out of a universe of 10 million worldwide, mostly young people between 15 and 30, although there is a peak in late diagnoses around 60/ 65 years. . “And we also have a percentage that is increasing, with pediatric cases, which reaches up to around 30%,” explains Paula Lago. The causes are not known, but specifies the gastroenterologist, it is estimated that the western way of life could be the trigger.
Over the past 20 years, as experts explain, the emergence of biotech drugs in Portugal has dramatically changed the treatment landscape.
Genetic susceptibility is also part of the equation, as the main known risk factor for having inflammatory bowel disease is having a family member with the disease. “Family history is present in about 15% to 20% of cases,” says Paula Lago. In addition, it is a chronic disease, non-infectious and non-contagious, which should be reinforced because, reveals Ana Sampaio, there are certain taboos in relation to it. “Patients themselves sometimes experience certain limitations within certain circuits because there is still a lack of clarity regarding this aspect.”
But, despite disease conditions, therapies are now more effective and less invasive. Over the past 20 years, as experts explain, the emergence of biotech drugs in Portugal has dramatically changed the treatment landscape. “Patients significantly improved their quality of life, in some cases easier control of the disease was achieved and the patient managed to lead a normal life, which is the main thing when there is no of a remedy”, emphasizes Paula Lago. At present, there are many other therapeutic weapons that, when properly used and at the right time, allow to achieve complete healing of the intestinal mucosa. “These are very expensive drugs, but reimbursed 100% by the SNS.”