The struggle of patients with a stoma: “It is not dignified to enter the bathroom on your knees” | community

Everyone has to go to the bathroom. For most people, this is a routine action, compatible with going to class, down the street, to the supermarket or watching their children’s Christmas performance. But the reality is much more complicated for people with a stoma who have to expel their excrement or urine into a bag attached to their body. To do it well, they need an adapted toilet, and there are only 82 places in the entire Spanish territory that have them, most of them hospitals. This Saturday is World Ostomy Day, a date they want to take advantage of to hear their request to include toilets adapted for ostomy patients in the technical building code.

An ostomy patient is one who has had a stoma, an operation in which a hole is made in the abdomen to remove the digestive or urinary tract and which allows waste to pass into these containers known as collection bags. The average age of people with this intervention is between 45 and 55 years. The reasons are very different, but always involve relieving or overcoming a problem: cancer, Crohn’s disease, ulcerative colitis, infections or even car accidents, among others. Therefore, a stoma or stoma is not a disease, but a decision that, although it saves and restores the quality of many lives, can also be a difficulty for every day.

There are around 200,000 people in Spain with collection bags, according to figures calculated by the Federation of Associations of Ostomotic People of Spain (FAPOE). In 2018, the White Paper on Ostomies estimates less, around 70,000, although it estimates 16,000 new patients receive a stoma each year. Spread across the peninsula and islands, the 82 places with toilets for people with ostomies have been achieved thanks to the work of families and associations, according to FAPOE. There are 150 public toilets in the city of Barcelona alone, according to the City Council.

Without air-conditioned services, people with ostomies cannot go out to walk, dance, dine or work in peace. In the absence of a sphincter, bowel movements and urine cannot be controlled, so it is difficult to know what time of day the bag will be full. The fear of leaks and the lack of a suitable place to empty them paralyzes the lives of many and can cause injuries, so many prefer to stay at home. “Life starts to revolve around the bag and the bathroom,” explains Yolanda Fernandez, FAPOE Vice President and bladder cancer survivor.

Because of Crohn’s disease, Ángela Paz, vice president of the Association of Inflammatory Bowel Disease and Ostomy Patients (ASSEII), has an ileostomy, a type of stoma whose opening connects to the lower part of the small intestine. “It takes away my social life, it takes away my quality of life, and I end up saying, ‘Well, I’m not leaving the house this week.’ She is 59 years old. “It’s not something for older people, it happens to a lot of young people,” he says.

Oliver Garcia is 23 years old, he is a student and has dropped out of his degree due to complications caused by Crohn’s disease and a stoma in his academic life. “I didn’t feel very understood by the university,” he says. Now she’s trying to break the taboo of ostomies and pouches while getting a higher grade. “For the first three years, I really locked myself in the house because of shame and the complexes that the bag generated for me and that, for example, I would be looked at on the beach,” he recalls. “But my friends found out and now I can say that having the device has greatly improved my quality of life,” he says.

From FAPOE and other associations, stoma patients have been asking for more adapted services in town halls and autonomous communities for years. “In all places where proposals have been presented, they have been accepted by a majority,” says Maria Ronderos, in charge of communication at FAPOE. They managed to get a motion unanimously approved in the Senate in 2021 at the request of the People’s Party, which called for “continuing to improve the accessibility of public buildings so that toilets are adapted for people with a stoma and to promote awareness and measures to awareness Social “. However, the government has not contacted any association to develop the proposal. “We also had a meeting with the socialist and people’s parliamentary groups in Congress, they told us that they will review it, but for now we are still waiting for an answer,” laments se Ronderos. With the PSOE they met on April 6 this year; with the PP on March 7.

“They’re not even economically expensive,” says Fernandez. “For a long time we studied the characteristics of the toilets so that we could adapt them in the most efficient way. What we need is a toilet raised to belly height, a counter to put all the products, a small rinse so we can clean the bag and a mirror that is at a certain height to see the bag,” he explains .

To change the bag in a normal bathroom, stomates have to juggle. “A lot of times the space is very limited. We have to kneel, placing paper or garbage bags on the ground. So I got out my scissors, my plates, my mirror, my gauze pads, my skin protectors, everything. If the toilet has a cistern, I leave some things in there. If not, on the dirty ground. When the light goes out, I turn on a flashlight that I wear around my neck,” explains Paz, adding, “Be careful not to spray it and wear gloves. It’s important because of the infections.” Sometimes bending over can damage the abdominal area of ​​the stoma. “We need adapted spaces because it is not dignified to enter the bathroom on your knees,” asks Fernandez.

She can’t accompany her daughter to her favorite park because there are no nearby restaurants to go to. He studied them. So he always carries a plastic bottle with him to empty the bag. Garcia is angry that he can’t make long-term plans with his friends, like trips or festivals. “Also, because I have to go to the bathroom more, I always end up paying at the bars,” he adds. Ronderos, who was forced to drop out of language school due to a bag incident, has gone two whole days without eating to go to an important event or location. “If the intestines have nothing to excrete, the bag doesn’t fill up.” It’s the only thing that allows me to go safely,” he admits. “We live in a country with a great culture around food, important for the family environment. We avoid it and we miss all this”, says Paz.

Collection bag for stoma patients.OSCAR CORAL

Many patients have emotional complications after surgery. Specialist dental nurses can give them the help they need, both practical and psychological. She is a key support figure, present “before, during and after the intervention”, explains Inmaculada Pérez, president of the Spanish Nursing Society (SEDE), an expert in stoma therapy. “The work in stoma consultations focuses primarily on the psychological support that the patient needs as there is a change in their body image after the operation. We also avoid complications, immediate or late, and teach basic stoma care,” explains Perez. “It’s a major support for us and our quality of life, especially in the early years,” Ronderos says.

The joint visibility work carried out by SEDE and the associations has significantly increased the number of ostomy consultations in recent years, both in public and private centres. Currently, there are about 250 scattered throughout the territory. “But there is a great disparity between the autonomous communities, we cannot say that all the demand is covered,” complains Peres. “We need to expand training in ostomy therapy, both in emergency and primary care,” insists Paz, “because there are not enough experts.” Fernandez is asking for it to be recognized as a specialty. “Moving from province to province is not always easy for us, we can’t go by train or bus,” he says.

In addition to the psychological aspect, there are also physical consequences arising from the stoma. Paz’s ileostomy causes loose and corrosive stools. You have to be extra careful with leaks and changing bags because you can easily burn your skin: sometimes with first, second or even third degree burns. The collection bags are covered by social security, but not the ointments and medicines needed for the treatment. Antidiarrheal drugs, for example, were removed from the catalog. Paz takes eight pills a day from a box containing 18, which used to cost three euros. Now it costs nine, so the monthly cost amounts to 90 euros per month, just for one drug. “For people on a disability pension, it’s an unaffordable expense,” he protested.

Garcia has a much better social life than at first and is open about her ostomy. “In this society, the different is defined as rare, and the rare is discriminated against. I want the stoma to be visible so that the three years I spent on no one will suffer”, says the young man. For Fernandez and Ronderos, the stigma needs to end because they deserve to “go to the bathroom like everyone else.” Paz explains that “it’s like an invisible disability,” but she maintains her will to fight. “Well, look, sometimes I go ‘feet down,’ but we have to keep our heads up, move on, and get back to normal.”

“And what will you do when there are many adapted toilets?”

– Oops! Travel and see all my wonderful Spain.

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