Let's talk about Inflammatory Bowel Disease (IBD).
Imagine what it is like to have a chronic disease that causes diarrhoea... sometimes with blood loss, fever, abdominal pain, perianal lesions (abscesses, fistulas) and often requires surgery. Given its characteristics, the possibility of interfering in your personal and professional life is somewhat high.
And on top of that, there is no known cure... But it can be controlled.
In 20% of cases, it requires periodic intravenous therapy, usually every 2 months.
They are Crohn's disease and ulcerative colitis, which most significantly affect young aged/ young adults in the active phase of life (20-40 years).
About 25000 Portuguese people live with these conditions, which increase every year.
Our Service has a high performance team led by Dr Luís Correia and Nurse Isabel Tavares, who provides a complete service in the management of this type of disease:
From the Outpatients’ Consultation, to the Day Hospital, the Ward and the collaboration with Surgery and Imaging, we have several different professionals in the IBD area. Innovation is constant. Soon we will start the digestive ultrasound in a sustained way conducted by Dr Samuel Fernandes. We also have a psychologist and a dietician who can intervene whenever necessary.
We follow-up around 2500 Portuguese and a few dozen European citizens and from other areas of the world, whom we try to help in various ways.
With regard to the IBD day, we decided to tell you about these pathologies in general and in particular at our hospital centre. We also invited two important partners in the integrated approach to these pathologies, the Portuguese Association of Inflammatory Bowel Disease (APDI) and the Crohn and Colitis Association of Portugal.
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Rui Tato Marinho Associate Professor at FMUL; President of the Jury for the Master Degree in Palliative Care; Director of the Gastroenterology Service of Santa Maria Hospital; President of the Portuguese Society of Gastroenterology. |
Chronic Idiopathic Inflammatory Bowel Diseases
IBDs constitute a spectrum of systemic, chronic, idiopathic inflammatory diseases, with no known cure. They primarily affect the digestive tract, especially the bowels, and have wide phenotypic dispersion between two extreme conditions: ulcerative colitis and Crohn's disease. In the most severe cases, they have a high risk of surgery or neoplastic complications, require immunosuppressive therapies, and condition very low quality of life. At its origin, there are several factors, including polygenic family risk, precipitating factors, still poorly identified, associated with the Western way of life, and an interface mediated by the microbiome and immunoinflammatory pathogenesis.
When all this is combined, these diseases cause, in particular in Crohn's disease, a wide dispersion of symptoms, where diarrhoea and abdominal pain prevail, but also growth retardation (in children), or extra intestinal manifestations - (articular, cutaneous or ocular, among others). The complex fistulizing forms of Crohn's disease, the fulminating forms of ulcerative colitis and colon cancer are particularly destructive.
Since IBD does not have a diagnostic marker, bringing together clinical, laboratory, imaging and, above all, endoscopic criteria with its histological complement, is in itself one of the reasons why the diagnosis can be late and its approach, even in the lighter forms, dependent on expertise.
Treating IBD, in particular its most severe forms, requires multidisciplinary teams that, under the guidance of the gastroenterologist, follow-up the patient and the disease in its multiple manifestations throughout a life that is intended to be long and with good quality.
On the other hand, IBD has been one of the most innovative focuses in gastroenterology, with the introduction of innovative therapies, biotechnological and beyond, reducing the rate of surgeries and prolonged use of corticosteroids, which are extremely negative in the long run and a poor prognosis in itself. In particular, the use of immunomodulators such as Azathioprine, although not altering the natural history of the disease, has reduced the use of corticosteroids. The appearance of biotechnological drugs, inaugurated with Infliximab and other anti-TNF and currently complemented by inhibitors of leukocyte migration (such as Vedolizumab) and Interleukin 23 inhibitors (inaugurated with Ustekinumab) finally put us on the path of reducing surgery and changing the natural history of the disease. Much is expected of the most recent appearance of small oral molecules such as Janus-Kinase inhibitors, initiated with Ustekinumab in the treatment of ulcerative colitis.
But perhaps as important as having new drugs, has been the use of new disease treatment strategies: approaches such as treat-to-target or tight control, validation of endoscopic healing in general, histological healing in ulcerative colitis or transmural healing in Crohn's disease, have been the hallmarks of effective change in achieving results. The monitoring through new laboratory biomarkers (such as faecal Calprotectin) or imaging, (such as intestinal ultrasound), have allowed us to pursue and attain these objectives.
Because if it is true that the person is always at the centre of care, a 2500-year-old Hippocratic lesson, it is also true that health care must be based on good scientific evidence: early and timely diagnosis and induction of clinical, endoscopic and profound remission, in order to control inflammation and prevent progression to the destructive and complicated forms of the disease: fistulas, strictures, neoplasms, surgeries and stoma. Precisely because before, during and after we do not lose sight of the person regarding quality of life, it is essential to recognize that this will be much easier to achieve with the timely control of inflammation through rigorous good clinical practice based on the best scientific evidence.
IBDs at the Northern Lisbon University Hospital Centre (CHLN)
At CHLN we try to have an integrated multidisciplinary approach to IBD, centred on the gastroenterologist and based on four main pillars: (1) the IBD consultation, which follows-up about 2500 patients, according to a protocol, with group meetings of the gastroenterologists (with the interns) and mixed meetings with colorectal surgery; (2) the Gastroenterology Day Hospital, based on the daily activity of a specialized dedicated nursing staff, where patients are taught and counselled about diseases in general, and intravenous therapies for biological drugs and iron are administered, subcutaneous therapies are taught, protocol monitoring of serum levels of doseable biologics and calprotectin in stools are conducted, as well as immediate, telephone and face-to-face support for the multiple needs of patients; (3) the gastroenterology ward, with hospitalization of moderate and severe forms of disease, in its diagnosis and decompensations; (4) and the Gastroenterology Techniques Unit, where the performance of multiple diagnostic, therapeutic and surveillance and monitoring endoscopic exams that diseases require take place. Contact with the specialties of General Surgery, Imaging, Pathological Anatomy, Infectious Diseases, Rheumatology, Dermatology and the support of the areas of Nutrition and Clinical Psychology is also indispensable.
With a follow-up of more than 2500 patients, of whom 600 are undergoing biological therapy, more than 6000 IBD consultations, 3020 infusions and 1527 telephone nursing consultations held at the Day Hospital in 2020, CHULN's IBD group is proud of its activity and its contribution to the control of these pathologies and to the improvement of the quality of life of our patients.
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Luís Correia Head of the CHULN IBD Consultation and Day Hospital for Gastroenterology |
APDI patient associations
The World Inflammatory Bowel Disease Day is celebrated on 19 May and on that day the aim is to raise awareness of the obstacles that these patients face in their daily lives.
APDI - Portuguese Association of Inflammatory Bowel Disease, Ulcerative Colitis and Crohn's Disease, is a 26-year-old patient association that supports people living with this pathology, as well as their families and all those interested in knowing more about IBD.
Regarding the relationship with students, we have been working with pharmacy and nutrition students on an annual basis.
We have also conducted a very interesting project with the Faculty of Medicine of Porto that allowed us to speak to the students, for 10 minutes, as part of a surgery class that addressed the treatment of IBD. This project unfortunately ended when the professor who taught the subject retired.
What surprised us was that while we talked about the work that the APDI did with people with this pathology, the young medical students were very curious and interested. They saw the association as a good ally in the future to inform their patients, helping to provide them with information about the pathology most adapted to each patient and in language accessible to their understanding, but with the quality they wanted.
Bringing medical students closer to patient organizations promotes humanism and compassion. And “Compassion is in some way the soul of Medicine” (Pope Francis).
To learn more about our work, visit us at www.apdi.org.pt. We await you.
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Ana Sampaio Portuguese Association of Inflammatory Bowel Disease (APDI) |
ACCP patient associations
The management of Inflammatory Bowel Disease is complex and requires strict control of disease activity, close monitoring to avoid the side effects of treatment, health professionals with experience in IBD and a holistic interdisciplinary approach. This is the ideal view, which is desired from a clinical point of view. However, the perspective of IBD patients goes further than merely clinical treatment.
In recent years, we have seen many positive changes in the management, treatment and care of IBD patients. The creation of standards and guidelines in this field helped to promote these changes. The need to evolve, from a purely medical model of care to a biopsychosocial model in these complex, chronic and debilitating diseases, is now becoming more widely accepted and recognized.
Just think that the diagnosis usually occurs between 15 and 25 years of age. A person with IBD wants and needs a future beyond illness. He needs to study, do an ERASMUS mobility, start his sex life, start a family, develop his professional career and travel. In other words, he needs to have a life beyond the hospital and the office. This is a pivotal point in the future of health care. The health professional and the person with IBD should work together in this regard. Sometimes, what may seem insignificant to the health professional, has a great impact on the patient's daily life. For example, whenever possible, the possibility of having biological treatment at home allows the patient to reduce absenteeism from work or school, greater flexibility to travel for work or to go on holiday, and reduces visits to the hospital.
For a biopsychosocial model to be increasingly the norm and not the exception, it is important that there is a constant and frank dialogue between the community of people with IBD and health professionals. Cooperation between associations of patients and medical students is also crucial in the training of health professionals, precisely so that they see these patients beyond the mere clinical condition.
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Vera Gomes President of the Crohn Colitis Portugal Association |
