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When I look at her, I find it hard to believe that she has rubbed herself to death several times, that she fights pain every day that only morphine can relieve. As a result of a malignant tumor of the rectum, doctors had to create a stoma, i.e. an artificial anus. What is everyday life like with a stoma?

Tomalignant anal cancerled Dorota to have astoma( artificial anus) and struggles with the problems resulting from the disease every day. How did it come about? As far as she can remember, she has always had bowel trouble. When she went to camps as a girl, she hardly used the toilet. Dorota Kaniewska still does not know why it happened. Maybe it was subconscious, maybe she was reacting to the change in water or food. She did not deal with it, she did not complain to anyone. She decided that it must be so. "Like most young people in the 1980s, I grew up quickly and started a family," he says. - I did not miss anything, I felt good, life was going well. One thing that was bothering me was hemorrhoids, but I was managing. I bought suppositories and ointments at the pharmacy and thought that I was healing well. I never talked to my doctor about it, because it seemed to me that it was an even more embarrassing problem than the gynecological examination.

How hemorrhoids turned out to be cancer …

Time passed. Kamil's daughter - a he althy, beautiful girl - was growing fast. But Dorota's family life was not going well. She separated from her husband. I can handle it, she told herself in difficult times. "I have a child, I have something to fight for." But it was making its own plans for their lives. - In late 1998, constipation was replaced by endless diarrhea. I did not care - says Dorota. - I thought it would pass by itself. But it didn't, even after 11 months. There was blood in the stool, but Dorothy put everything down to hemorrhoids. Eventually she lost control of the anal sphincters. "When I wanted to pee, my bowel movement was also spontaneous," she recalls. - Nothing hurt, but the increasing discomfort disturbed me more and more. I went to the clinic. She found a young doctor who specialized in radiology at the hospital in Szaserów Street. After listening to her confessions, he without hesitation issued a referral for an x-ray with rectal enema. "I went for a checkup," she says. - I was prepared for surgery andthe x-ray started. Initially, there were only two people in the operator's cabin, but after a while a nice crowd gathered there. This worried me. I thought it might not be good, but waited patiently for the verdict. The doctor said they found a polyp the size of a cherry in the rectum and a biopsy still needs to be done. Waiting for the results of the histopathological examination did not distract me from sleep. "If there is a polyp, they will remove it and my problems will end," I kept telling myself.

Important

Stoma - a diet like a medicineThe correct diet of a person with a stoma should include coarse-grained stale bread, groats, lean meat, fish, dairy products, corn and cereal flakes, fruit, vegetables, vegetable decoctions and lean broths. You need to drink at least 2 liters of fluid a day. Fat and sweet dishes, carbonated drinks, spicy dishes, stone fruit, bloating vegetables such as peas, beans, onions, and cabbage are not recommended. The way you eat is equally important. Stomics should eat at least 3 meals a day, at regular intervals, chewing thoroughly and keeping their mouths closed to avoid gulping air. It's best to eat at the same time each time. When introducing new foods into the diet, you must try them separately and in small amounts. Then it is easier to eliminate those that cause bloating, constipation or diarrhea.

Diagnosis: rectal cancer, artificial anus necessary

The doctor handed the test results to Andrzej, Dorota's friend. He said you had to go to the head of the clinic and make an appointment for an operation. - But how? Polyp and surgery right away? Dorothy wondered. She took Andrzej's documents and started reading. She studied Latin in high school, but she didn't remember everything. She did not go to register for an operation, but returned home. She reached for the dictionary and everything became clear. Malignant neoplasm of rectum. Jokes are over. Dorota packed the necessary things and went to the hospital. The doctor she spoke to was honest and direct. "You don't worry," he said. - We will cut what we need, we will make a hole in your abdomen, we will put a bag on and you will live peacefully. - The world collapsed, everything was spinning, the words "hole in the stomach", "bag" were still heard in the ears - Dorota will never forget it. - I ran away from the hospital. I decided to find another doctor. I was hoping he would say something else. It didn't. But in a hospital in Międzylesie near Warsaw, I found an elderly doctor who explained everything to me. From Międzylesie, I was referred to the hospital in Banacha, because there was a Polish-American program of treating colorectal cancer. The irradiation began, after which the operation was to take place. The day before the surgery, Dorotashe heard that it might be necessary to have a stoma. She didn't know what it was. The doctor patiently explained the details of the procedure. - I do not agree, I will kill myself sooner! she screamed. - Maybe an anastomosis can be performed - reassured the doctor. - We'll do our best to help you. When she woke up after the operation and saw that there was no pouch on her stomach, she felt a great relief. She was happy. The doctor explained that the intestine fragments had been stapled together and that everything would be fine. However, the future was to show that it was not the best idea. Dorota went for chemotherapy once a month. She was weak, she had anemia, high temperature and constant stomach ache. But that was put down to the side effects of chemotherapy. In the end, it turned out that the staplers did not seal the gut well. Food leaked into the belly. A second operation was necessary. This time it was certain that it would end with the creation of a stoma.

They drove me from hospital to hospital

There were problems with the kidney: she did not empty her urine, and her mechanical decompression, performed without anesthesia, hurt incredibly. After the procedure, more than 60% of patients were found. kidney failure. - If it worsens, the doctors will cut the kidney, it will go to the garbage can - says Dorota. He pauses his voice, turns his face away, so I don't see him cry. I wait patiently, I don't ask questions, I don't urge her. "Oh, there was a lot of it all," she continues after a while. - Before chemotherapy, I had hematomas removed from the lower pelvis. I went through a bowel twist. I was transported from hospital to hospital, from the table to the operating table. Finally everything calmed down. The stoma was working well, so Dorota was let home. She was about to start a normal life, but it turned out to be overwhelming. - For almost a year after the surgery, I only left home when I had to go to the clinic or for tests - he admits. - I was sitting at home because it seemed to me that everyone on the street knew what happened to me, that I have written on my forehead: people, I have an ostomy. That was a nightmare. There was no point in asking myself questions that could not be answered: why I, what sins I committed in my life, who did I hurt, for what this penance. Why now, when my private life took on new colors, when Andrzej appeared? Today I even smile at that childish behavior, but it was like that. Now I know that it is normal that every person who has to face a difficult truth, a terminal disease experiences it. In the most difficult situations, Andrzej was with Dorota. You could say that he was sick with her. When she said she was unattractive because she had a sack over her stomach, she had no hesitation in saying that she would stick it on herself too. But it wasn't easy for him… ”He could hardly bear minewhims and withdrawal from life - Dorota remembers her reactions well. - He supported me, even though I was not making it easier for him. He has a very good heart, he is willing to help people, he is warm, understanding and patient. He has gone through a lot in his life and knows what his real taste is.

Someday we will clear up old and current matters

When Dorota was hospitalized for the first time, her daughter Kamila was only 8 years old. She needed a mother … - I don't want to justify myself, but the pain that tormented me made me focus more on myself than on my daughter - says Dorota. - We had less and less common things, we talked less and less. Days, months, years passed. I was preoccupied with the struggle with the disease, she grew up without my support. If I could, I would take this time back, but it's not that simple. Today Kamila is already a mother herself. And although Dorota is trying with all her strength to help her, there is still a barrier between them, a distance that should not be between a mother and her daughter. - I think that maybe somewhere in the subconscious my daughter has a grudge against me for getting sick - Dorota lowers her voice. - That she was left alone with all her childhood and adolescent troubles. However, I hope that when Kamila gets overwhelmed, defends her master's thesis, stabilizes her life, the time will come when we will sit next to each other and explain all old and current matters. I believe that my daughter will not make my mistakes with her child. Although it's not true that we learn from other people's mistakes

I work in the Polish Ostomy Association POL-ILKO

A few years after the surgery, the pain started again. Nobody asked why this was so. - I was referred to an analgesic clinic and the case was considered closed - says Dorota bitterly. - First, I took strong painkillers, and when they stopped working, morphine patches. It has been like this for 7 years. Today I know that the cause of the pain is the adhesion of the stump of the large intestine to the nerve plexus. I have not found a doctor who would undertake an operation that would free me from suffering. Access to the adhesion site is so difficult that it is impossible to collect material for testing, so it is not known what is sitting there. So what remained was the daily fight against pain. But Dorota cannot sit idly by. She became involved in the work of the Polish Ostomy Association POL-ILKO and was elected vice-president. When she started, the Warsaw branch of the association had only 20 members, now there are over 300. But there are many more people with a stoma. They do not seek contact with the association because they are ashamed of being different. - A sick person has the right to decide to whom and how to tell about his illness, about ailments,fears - says Dorota. - Everyone must see the loud saying: I am sick, I have this and this. If someone, even in their best faith, speaks it for you, you are pissed. And this is justified, because human intimacy must not be violated. I have experienced such situations. I felt deceived and humiliated, but luckily I got over it. There is also the other side of the coin. - Many people hide their disease, do not want to talk about it, because they do not believe that they can get psychological help, information about a proper diet, maintenance of the stoma, how to deal with uncontrolled gas, and how to live normally - convinces Dorota. - I did that too. I thought that if I didn't say anything about myself, the problem would disappear. It does not disappear. On the contrary, it grows and hurts more and more. In these lonely struggles with the disease, with shame and pain, they hurt their loved ones, the most loved ones. It happens that blows are de alt left and right. Not out of ill will, but out of helplessness. When you suffer, you don't take into account that your suffering causes pain to others, that it causes them frustration, anxiety

Important

More and more stoma patients

There are almost a million people with a stoma in the world (about 35,000 in Poland). Due to the development of civilization diseases, there will be more of them. Most of them are women over 50, but recent years have shown that the age limit of patients has been dropping significantly. 80 percent operations that require a stoma are a consequence of tumors.

Stoma as a cause of intolerance and humiliation

Dorota has never experienced rejection from her loved ones. But she got to know his taste in he althcare facilities. When she was lying in the hospital after the ostomy surgery, the nurse, who did not know how to replace the bag efficiently, heard: - Well, that I also have to mess with other people's balls…. Another time, because of the stoma, the doctor wanted to put her not in the room, but in the corridor. - I hear from many people who come to the association that some people go even further - says Dorota. - Patients with a stoma are harassed and treated like inferior people. They often do not react, bear unpleasant remarks in silence, because they are afraid that they will not receive proper help. Meanwhile, there is no reason to be ashamed. This can happen to anyone, because the stoma also emerges after accidents in which the intestines are damaged. The disregard for this group of patients can also be seen in the limited access to ostomy appliances. No patient has enough of it without wondering when to change the bag. For several years, the Ministry of He alth has wanted ostomates to pay some of the cost of the equipment. Subsequent patient protests dismiss this onedecision, but the threat of introducing hardware fees still exists.

Important

What is a stoma?

Stomia (Greek for stoma - mouth, opening) is a new outlet for metabolic products. It is created when a disease such as cancer requires the removal of a fragment of the small intestine, large intestine, anus or part of the urinary system. During the operation, the surgeon creates a hole in the abdominal wall. It is called a stoma or fistula. It replaces the natural way of removing content that accumulates in the intestines or urinary tract. The most common is the colostomy, known as the abdominal rectum. It is formed after part of the large intestine is removed. The stool is passed through the colostomy. The ileostomy removes the contents of the small intestine. Urostomy involves joining the ureters with the abdominal wall to allow urine to drain out (it accounts for 10% of procedures). As a result of the creation of a stoma, the passing of urine or intestinal contents out of the body is uncontrolled. That is why patients must use the so-called ostomy equipment, i.e. bags for intestinal contents or urine stuck on the surface of the abdomen.

Living with a stoma every day

Stomics can lead an active professional, social and social life. They can have a successful family life. Returning to work is dependent on your overall he alth. People with a stoma can play sports, ski, walk in the mountains, swim, and women can have children. Dorota also lives quite actively. Despite everyday struggles with his body, he does not give up normality with dozens of restrictions. She is still curious about the world and has no time to be bored. Each day is well filled. You have to check the e-mail on the Internet, check if someone from the association needs something urgently. Later, visit the website of the Ministry of He alth. - Every day I take notes and write down new regulations in order to be able to pass this information on to stomists - he says. - We meet once a month to tell each other news, talk about troubles, sometimes to cry, sometimes to laugh. It is an important part of our life. Two, sometimes three times a month, Dorota sits on the juries of judges, where she has been working as a lay judge for several years. - I have great satisfaction when it is possible to reconcile feuding people, to draw their attention to the fact that there is no point in having a dispute. Every day she looks after her granddaughter, Kamila's daughter. They learn together, play and talk about the dogs they meet, the cats on the roof. You also have to cook dinner, go shopping, because Andrzej does those everyday. And it's time to meet friends. And in the spring it rushes to the plot. He plants, heats, exaggerates, cuts … - This is how I create my new life - she says with a smile.

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