When Ricard entered the Arnau de Vilanova University Hospital in Lleida, he was 26 years old and weighed 76 kilos. Twenty-five days later, he came out weighing 14 kilos less, but with a diagnosis that, despite the seriousness, he was grateful for. Crohn’s disease was behind the severe stomach pains, the stomach ache, and even a uveitis that caused temporary loss of vision in one eye.
The verdict came accompanied by some reassuring words from his doctor: “he told me ‘you are not going to die. Yes, you are going to have to make some guidelines regarding more restrictive foods, accompanied by treatment and plenty of rest, because if you do not take care of yourself it will get worse. At that moment you are happy because you are not dying”, recalls Ricard Pons, a patient with Crohn’s disease and president of the Association of Crohn’s Disease and Ulcerative Colitis of Catalonia.
He is part of that 1% of the Spanish population that has an inflammatory bowel disease. In Catalonia, 42,000 cases have been registered, “but from the association we believe that there are more. Because sometimes people don’t go to the doctor and there are people who don’t identify the symptoms, ”he intuits.
That day in 1997 -it is difficult to erase the date from your head and from your calendar- Ricard left behind a time governed by physical discomfort and uncertainty. Another began that is for life -Crohn’s disease currently has no cure- and in which you have to “try to learn to live with the disease, something that is difficult in the early years and especially when you are young”, he explains pons.
And it is that, although Crohn’s disease can occur at any age, patients are usually diagnosed between the ages of 20 and 30, a vital moment that aggravates the impact on patients who are finishing their studies at the university or are Taking your first steps in the job market.
Yamile Zabana, a gastroenterologist and vice-president of the Spanish Working Group on Crohn’s disease and Ulcerative Colitis (GETECCU), establishes a second curve for those affected between 50 and 70 years of age. “People with Crohn’s disease often have a genetic predisposition that prevents them from responding correctly to their own bacteria, although environmental factors such as smoking also include environmental factors in the development of the disease. Some patients also point out that the onset of the disease was caused by a traumatic event that favored this disproportionate and incorrect response to immunity in general, ”she adds.
Regardless of age, the blow they receive is triple: physical, emotional and social. Both Crohn’s disease and ulcerative colitis are unpredictable, and their symptoms—including persistent diarrhea, abdominal pain, rectal bleeding, fatigue, nausea, or vomiting—can come and go without warning. It may be that in the middle of an exam the patient feels the urge to go to the bathroom. It may be that he needs to go to the bathroom more than 20 times a day, but he is at work, but he does not dare.
In fact, 72% of people with Crohn’s disease confess that this symptomatology has affected their ability to perform their work tasks. 38% have had to change jobs or adapt their responsibilities. They also tend to isolate themselves and reject social encounters. Psychologically, patients move between sadness, shame, misunderstanding, guilt or even depression. “It is a disease that is not visible, we carry it inside. It is difficult to explain it and express what you feel when you have a disease like this, ”says Pons.
That is why Ricard insists on the importance of putting more focus on the empathy and understanding that these patients require, influencing the training and information work.
A support that they do find in the medical environment because “when a patient debuts, they are welcomed by a multidisciplinary team of nurses and specialists that is made up of gastroenterologists, rheumatologists, nutritionists, radiologists, pediatricians, dermatologists, ophthalmologists and, in some units, also psychologists. Our goal is to effectively address the clinical, psychological, and social aspects of the disease. It is a personalized treatment because no two Crohn’s diseases are the same”, points out Zabala.
But they go further, “something that worries patients a lot is uncertainty, not being able to organize their lives because they don’t know when they are going to have an outbreak. That is why it is essential that they have direct access to inflammatory disease monographic consultations to avoid unnecessary delays in the diagnosis and treatment of an outbreak or a complication derived from the disease itself or from the treatment they receive ”, he adds. This is a key step to make disease management easier and less limiting.
The hospital pharmacy is another ally in the process, because in addition to dispensing medication for hospital use, “pharmaceutical care consultations are carried out here, in which, through the clinical and motivational interview, we establish a close relationship with the patient, we help him understand his treatment, we resolve any doubts that may arise and we work together to motivate him and make him co-responsible with his medication”, details Nuria Rudi, head of the Pharmacy Service at the General Hospital of Granollers.
The approach focuses on the patient achieving as much normality as possible in his life and although “as a doctor, you would like to find a medication, a therapy, a surgery that really allows you to cure the disease, something that today does not exist and We must try to get the patient to accept this news, the disease will always be with us like diabetes or hypertension. But it has been shown that in patients who follow the controls and adhere to the treatment, they have shorter flare-ups and faster responses”, says Zabana.
In recent years, giant steps have been taken and “the therapeutic arsenal for Crohn’s disease has expanded significantly thanks to the identification of new therapeutic targets,” Rudi points out.
This translates into aware and empowered patients. It translates into positive messages like the one we heard from Ricard: “Crohn’s has changed me for the better and I’ve been able to improve many things. Now I get along with it [the disease] because I have gotten to know myself and I know when I can afford a plate of bravas. I have the disease under control and I want to help newly diagnosed people. Because the hardest part, the days of admission and that uncertainty of not knowing what happens are behind us”.
