It is celebrated for the first time in Poland. For sick people, it is an opportunity to hear their faint voices coming from the toilet. They fight not only with the disease, but also for access to modern biological therapy, which gives many of them a chance to live in dignity.
According to the decision of the EFFCA (European Federation of Crohn’s & Ulcerative Colitis Associations) and the Associations of the Americas and Australia, the International Day of NZJ is celebrated all over the world on May 19. This year, Poland also joined the celebrations. Patients associated in the “J-elite” Society conduct them under the slogan: “Our life is a paradox: in the toilet and often and rarely”.
– Crohn’s disease and ulcerative colitis – mostly young people, aged 15-35. There are many of them in our Society, but most of the sick remain hidden because of their embarrassing symptoms. We want to cheer them up and show them that you can approach a serious illness and the suffering associated with it in a cheerful manner. Young people have many ideas for illustrating life with the disease, so we decided to treat our holiday with a grain of salt. On May 19, 2011, on the occasion of the World Day of Crohn’s Disease and Colitis Ulceros, Katowice and Warsaw will host a battle that these cities have never seen before. The ammunition in it will be colored toilet paper, thrown like a serpentine – says Dr. Małgorzata Mossakowska, vice president of the “J-elita” Society. The happening is aimed at making the environment interested in our problems, showing the sick that our ailments do not have to block us from doing crazy things – she adds. If you want to meet people with CU (colitis Ulcerosa) and CD (crohn disease), i.e. MIRACLES, join us:
Katowice: The action will take place on the square near the “Spodek”. Start punctually at 18 p.m., so it is worth arriving a few minutes earlier.
Warsaw: We invite you to the area between the entrances to the Śródmieście Railway Station. 18:00 !.
When coming, bring colorful toilet paper rolls with you, colorful ones, because it’s supposed to be fun! This will be your ammunition. We will throw rolls, unfolding them like a serpentine, entwine with them, play at will. After the battle, garbage bags will be distributed and there will be common cleaning. Detailed information and regulations are available on our website http://poznajcudakow.foortka.pl/. For the purposes of the campaign, we also created our profile on Facebook, where several hundred people have already signed up. Join us and you!
The society does not know much about diseases from the group of IBD, although every year in Poland they are diagnosed in about 4000 people. The patients themselves do not talk about their ailments, which are considered embarrassing, which arouse pity rather than sympathy in the environment. Diarrhea (often bloody), abdominal pain, gurgling, flatulence caused by inflammatory changes in the digestive tract – these are just some of the unpleasant symptoms of Crohn’s disease (MS) and ulcerative colitis (UC). In the period of exacerbation, it is not only suffering, but also forced isolation.
These are diseases with periods of calm and exacerbation that cannot be predicted. If the symptoms appear once a year, it can be said to be happiness and a mild course of the disease. Unfortunately, in many cases it is not possible to control the symptoms of the disease and life is closed between home and hospital.
These diseases affect young people, and recently more and more often also children, disrupting their physical and mental development; in the period of intensive learning and choosing a career path; when relationships with peers are very important. Patients wander for months after doctors of various specialties, before they find out the real cause of their ailments. Often, when they finally see a gastroenterologist, they are exhausted and emaciated.
Standard treatment of inflammatory bowel disease (with many side effects, steroid therapy and immunosuppression) is not always effective. Many patients do not achieve the desired effect, which means in many cases the need for surgical intervention. The procedures may be accompanied by complications. The solution for many patients is modern therapy with biological drugs that significantly reduce the inflammatory process, accelerate remission and extend its duration. Unfortunately, access to them in Poland is still very limited.
Crohn’s disease
Access to biological therapy, despite the introduction of a therapeutic program, is insufficient due to financial limits imposed by the National Health Fund and the strictest eligibility criteria for treatment in Europe. As a result, patients receive biological drugs too late, when the disease has caused irreversible damage to the body. Therapy, according to clinical indications, should be applied much earlier in order to slow down the progress of the disease and avoid serious complications and disability.
The eligibility criteria for the program should be lowered, especially for children. Young severely ill patients have to wait for their condition to worsen even more to receive biological treatment. Experts warn that delaying the initiation of biological treatment in these children is a loss of the chance to stop the inflammatory process that destroys the body. It is also a chance to avoid bowel removal surgery, creating a stoma (an artificial opening of the intestine formed on the surface of the abdominal skin). Children are in a particularly dramatic situation, because worse food absorption leads to serious development problems and to limitation of social life.
Ulcerative colitis (Colitis ulcerosa)
The therapeutic program of biological treatment of UC still does not exist, despite appeals and petitions as well as the unequivocal position of medical authorities. The lack of reimbursement prevents doctors from reaching for this group of drugs in clinically justified cases. Patients for whom standard medications do not work are doomed to mutilating operations to remove the entire colon (colectomy). According to specialists, surgery should be a last resort, not the only solution. Colectomy affects the patient’s further life.
More information: www.j-elita.org.pl