I live without a bladder and with diverged bones to the pelvis

People in social networks wish me death. But I am still happy and continue to talk about my illness

Svetlana Dan is 19 years old, she lives in Perm and studies on a programmer. Immediately after birth, she was removed the bladder, and now she lives with a catheter on her thigh. After the humorous Reals, which Svetlana laid out on her Instagram, sheiters attacked her. Then she decided to talk about her diagnosis publicly and received a sea of ​​support. The story of Svetlana is in the heading "From her words."

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Usually, after the birth of the child, mothers are immediately put on her chest, and doctors immediately took me. When my mother was pregnant with me, the ultrasound did not show any deviations, but when I was born, it turned out that the organs that should be in my stomach, I had a intestines and bladder. Several times they tried to place them in the abdominal cavity, but even before the discharge from the hospital, all the seams broke, and I had to sew it up again.

Before the operation, my mother did not say at all that they want to remove my bladder and what my diagnosis is. But they said: “You are still young, and this is your firstborn. She will die anyway, leave her here as a refuser. You will be calmer, then give birth to a healthy child. ” She was also told that I did not have enough bones, and I could not walk. But my mother did not leave me and replied that she would take care of me.

The children decided that I was contagious

In the first operations, even in the hospital, the doctors made the urine to go through the intestines and an anus. Therefore, until the age of 17, I could not control urination and wore diapers. In them I slept, went to kindergarten, school, and then to a technical school.

Everything was fine in kindergarten: I was identified in a regular group with healthy children. The forecasts of doctors that I could not walk did not come true: I developed normally. In the kindergarten, I did not feel any difference between me and others, because the children had not yet managed to become cruel and did not compare who and what was different. Everyone was kind and equal, and I did not even suspect that something was wrong with me.

Problems began at school. I graduated from the first class in the Osa ( a small city in the Perm Territory with a population of 20 thousand people. - Approx. "Cold" ), and then my family moved to Perm: there is better medicine and more specialists who could help me. In the new school, the teacher immediately introduced me as a disabled person. She said: "Be careful with this girl, she is very sick, do not touch her once again." The children decided that I was contagious, and the teacher did not explain anything to them.

Before graduation in the ninth grade, I practically did not communicate with anyone: I was not poisoned or drilled, but ignored. And because of the specific building of the pelvis, classmates said that I had crooked legs-especially when I went in jeans. Then I was terribly shy, and therefore I usually wore pencil skirts. At the graduation in the ninth grade, I asked why they did not communicate with me. They answered me that this is because of the very words of the teacher.

If I don't change the catheter on time, I can die

My diagnosis is called "Ecratrophy of the bladder" - this is a rather rare disease. I have no bladder, and the pelvic bones are not where they should be. I can’t get away, otherwise the stomach will hang terribly. And to get pregnant is also unsafe - my bones are not enough to maintain the fetus - but theoretically this is possible. I can’t walk in nature for a long time, since I always need to be next to the toilet. I can’t go on distant trips or go hiking with nights.

When I was 17 years old, the doctors said that I was already an adult, I need to study and arrange my personal life, and not change diapers. Therefore, they decided to do the operation so that I could walk with the catheter. Usually, the urine tank in such cases is made from the appendix, but in 2021 it was cut out to me, so the situation had to be decided differently.

I did not have a navel, and the doctor made a hole, took out my intestines, cut off the part from it, sewed the intestines so that it looked like a tank, and put it back. Unfortunately, this operation was unsuccessful. On a walk from the catheter, a fountain began to pour at an angle of 90 degrees. I spent six months in such discomfort and again came to the doctors. Then they decided to remove the catheter through the hole in the stomach, which can be hidden under the clothes.

I take 40-centimeter catheters and I am half introducing inside, this is a very painful process. Sometimes I don’t even go to couples, because I can't put myself a pipe. It is also very expensive, on the day I use eight catheter, and one costs from 50 to 150 rubles. In funds where medical devices are issued for free, they are not always there. And if there is, then very hard tubes that are not suitable for me and which it hurts to walk with. There is no medical lubricant in the funds, so I buy it myself is also expensive: one tube can cost more than a thousand rubles. But changing the tubes is comfortable and does not hurt.

Almost every day I go to the hospital to the urologist. I was lucky with him: I have an amazing and very human doctor. He always misses me without a queue and knows that my case is rare. Other patients begin to be angry and indignant: "Who is she, why is it before us?" And the doctor comes out and says: "I will not want to survive what she goes through in my life." I think he is just a hero. Once a season I go to the hospital for a week. Soon I have an operation: near the stoma (a hole for the introduction of a catheter. - Approx. "Cold") I got a hernia. In general, for my life, they did so many operations to me that my body copes with this poorly: spikes form, the seams are growing poorly.

I cannot play sports: I have a high risk of dislocations and fractures. Any injuries can lead to serious complications, because I have very fragile bones. All my life I have been freed from physical education and I just hand over the essays on it. The maximum than I can do is swimming. In the summer I always bathe, and sometimes my dad and I go to the pool.

I am contraindicated for carbonated drinks in large quantities, because my bladder is made of my intestines. After the soda, the stomach begins to hurt. I also can’t, except for a lot of alcohol, except just a little. If I turn off and will not change the catheter on time, I can die.

Many do not believe that I am sick

As a child, I normally perceived hospitals and procedures. But as they grow older, I began to oppress me that I could not study normally and walk like everyone else. I can’t go to concerts because they can push me there. I had a question: "Why am I?" My sisters start friends, study well, everyone has time, all the roads are open to them, and I spend a lot of time in hospitals. She accused her parents, asked: “Why did you give birth to me? Could refuse, maybe it would be better if I were not. ” Then there was the period "you owe me everything because I am sick." But my parents always helped and supported me.

At 16, I could not accept my body, cried in the ward of the Moscow hospital, where they had surgery. Then the nurse said that in the next room there is a girl with a similar diagnosis. We met, she told how she lives with this, and said that this is not the end of life. If not for her, I don’t know if I could accept the situation. Now we are close friends: we go to visit each other - I'm in Penza, she is to my Perm.

My friends accept me, although at first I tried not to tell them about health problems. There were no problems with personal life either: I was lucky with my appearance, and the guys consider me beautiful. I told them about my diagnosis, some were scared, but no one refused me or threw me because of this.

Many people do not believe that I am sick. When the catheter is overwhelmed by a couple in college, I ask: "Can I go out?" I am not allowed because there is a lesson. And it hurts me, my blood is already starting to go, a strong smell begins. I begin to cry and embarrass to say that I am very bad. As a result, I stand in front of the whole class and show that I have blood, urine in the tube and wet jeans. Many became ashamed, and some later said: "Why then study if you are so sick?"

Once I was traveling on a bus with a friend. I felt very bad, I had a catheter, and my friend gave me her place. Suddenly an elderly woman came up and said: “Beautiful! Settled here ” - although many men were sitting on the bus. I was scared, did not argue with her and gave way to her, although it was even more painful to stand. Now I understand that I had to explain to her that I was sick.

My humorous realx "Why is the brigade to do the repair for so long?" Suddenly he scored half a million views. It was after him that I ran into the hat from strangers. I didn’t even think that someone would look at my legs: in this video I was going only three seconds. But one commentary, the second, the third - and all of them on the topic "Why did you put up if you have such ugly legs?"

They even began to threaten me in Direct: they say, why do you exist. Then I decided to talk about my diagnosis publicly. After that, comments and messages with support came, but Hayit and approval are now approximately 50/50. Some wrote to me: “Why are you shooting this? Why are you showing this? If you are sick, close your mouth. " And then how to be other people? There are diseases or consequences of accidents that you cannot hide with clothes. Now people do not live, close? I love tight -fitting dresses, but a catheter can be seen with them. And what, now I do not wear what I like? Do not wear shorts if my legs seem to someone crooked? When supportive comments began to come in massively, I realized that it is important to talk about it.

I can't learn from the artist, but I have not left a dream

The diagnosis did not stop me from getting a driver’s license. Before classes in a driving school, I went to the shopping center and carried out all the necessary procedures. Then she got behind the wheel, studied, ran out, changed the catheter and went home. The catheter does not interfere with driving a car - you just need to consider that once every two hours I need a toilet. I have a second disability group, so I will have a special sign by car and I can stop anywhere.

Now I am studying in a technical school at a programmer, because with my illness I need a sitting profession. At first I studied at an art school, but due to chemicals in the composition of paints, doctors recommended that I refuse it. But I really like to draw - I write paintings for myself and to order. I hope that I will continue to draw and sell my work, and the programmer will work out on freelance.

I believe that no matter what diagnosis you have - you need to look for advantages in everything, be an optimist, in no case do not stop and continue to live. My illness made me more empathic. If I were absolutely healthy, I would also be careful and cautious about people with diseases and was afraid to approach them once again. But now I try to understand people, sympathize with them and help those who are bad.