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The story behind Agata's diagnosis has little to do with happiness. Though now she is contagious with her joy, she has lived most of her life with an illness that was destroying her he alth, body and mind. Today she is a proud stoma, who enjoys life to the fullest. Not despite the stoma, but thanks to it.
Agata Śmietana:Can I start our conversation?
Patrycja Pupiec: Of course, please.
There are amazing stories around my stoma and I believed in them for 30 years of my life. I was convinced that it was something terrible, therefore, when the interview was possible, I did not hesitate for a moment, because since I am a stoma, I feel a certain calling.
This means?
As a stoma, I know you have to talk about it. Then there will be no taboos, and children who have an ostomy will be able to go to school freely, and women to the gym or swimming pool. I spent many weeks in hospitals, many times fighting for my life. I made a promise to myself that if I managed to come home, I would talk about the fact that I owed my new life to my stoma. I say it completely honestly, even though I know it sounds weird.
Why?
People think a stoma is just a pouch on your stomach. It is not like that, because behind each bag there is a different person and a different story. It is worth getting to know her to understand what kind of experience she is.
Did you know other stomas before having your own stoma?
Sometimes we don't realize that the person sitting next to us on the bus may have an ostomy. I honestly admit that I knew one person personally, but the meetings in the StomaLIFE Foundation's group of stomas made me realize what the life of a stoma looks like. Then I noticed a certain division.
What division?
The first group consists of stomas who have experienced many traumatic events, who have been looking for diagnosis and help for years, fought for their lives, and for them the stoma was their last resort. I belong to this group. This is my dream sack! Now I reach for it every day and enjoy life.
And the second group?
These are, for example, people who lived without any digestive ailments, regardless of diseases with itconnected, and suddenly a cancer, for example, appeared in their lives. The stoma was the last resort. A tragedy occurs because they woke up with a sack that they do not want or accept. These are mothers who experienced complications in childbirth and, together with the longed-for child, also had a stoma.
Stoma and new life in the package?
Yes, but it's a new life they don't want. They equate the stoma with something bad - disease, pain, hospital, limitations. They lived well, happily and, above all, he althy. Suddenly something happened and they have a stoma.
Initially, you perceived the stoma similarly?
At first I was very scared, everyone around me advised against emergence. They said I was young and I still had time to try other things. For 4 years, I struggled with pain, suffered, lost weight, and exhausted my body, but I was looking for other solutions, because before the stoma appeared, my image of it was negative. When the moment came that all attempts to help were unsuccessful, I heard from many people that the stoma would help me and, in fact, it was not that bad. I had to decide and took a chance. It was the best decision of my life. To prepare for its emergence, I also underwent parenteral nutrition. I know what it means to be bedridden and plugged for 12 hours. It made me even stronger in my decision.
Once it has emerged, this image has changed completely?
Then I came to the conclusion that when I was most troubled by symptoms related to my disease, I dreamed of having a stoma, but I didn't know it yet.
When I started to function with it, a question popped into my head, why did I not know about it before that you can live like that? Why has no one told me before that I can just function normally and not just think about the toilet and eating? Losing the most beautiful years of your life.
Doubts arose that something could change for the better?
At the age of 26, I had a colon resection and the continuity of the digestive system was restored. It was supposed to give me a normal life. However, this did not happen. My illness made itself felt over the years. Every day after the surgery, I fruitlessly believed that everything would normalize. I was looking for other alternatives. And all this was the result of my lack of faith that my stoma can help me, that people normally go to work with her, play sports, and you don't really know who is a stoma and who isn't, and I only associated it with being locked at home, with insulation and generally with something bad.
That's why it's worth itto disenchant this myth of "bad stoma"?
Yes, because the stoma can give you a new life that you can draw from and just enjoy. Thanks to it, you can make your dreams come true and pursue your passions, without thinking in the back of your head that you will soon feel pain.
If you could now turn back time and decide to have a stoma earlier without wasting these years searching, would you be?
26 years I lived without a diagnosis of my constant diarrhea and constipation, my everlasting stomach pain. I was diagnosed in the hospital for a long time because no one had found the cause of my deteriorating he alth before. I heard that the intestine needed to be resected, that it was completely destroyed. I remember that the day before the operation, a nurse came to me in the evening and drew two lines on my stomach with a marker, and I was already falling asleep thinking, do what it takes, save me, because I want to live.
I thought that I would wake up with her and put myself completely into the hands of doctors, because I already felt such pain and suffering that it was just like - do anything to help me.
A bit like a last resort?
Yes, exactly. When I woke up after the surgery, I heard that I was a unique case, who did not need a stoma, because the surgery was successful and my body is strong enough that it was decided to restore continuity. But it turned out that in my case a stoma would be a better choice.
What happened then?
It was different than everyone expected. My body, after a strong treatment, suddenly needed support overnight, and I was disappearing every day.
What do you suffer from?
I was born with Hirschsprung's disease, but I functioned with it without knowing it because it was undiagnosed. I lived for 26 years with incredible constipation, stomach pains, and when I went to the doctor, I heard every time that I was oversensitive about myself, that I probably suffer from Irritable Bowel Syndrome, and everything is my fault, because my pains are definitely the result poor nutrition.
Doctors did not take you seriously?
Each of them thought it was my fault, and that was not true. I was eating he althy. In addition to geophysics, I decided to graduate from dietetics in order to have access to medical publications that will allow me to deepen my knowledge even more. I had to study, because I wouldn't go to any doctor, I always heard the same thing, that no one knows what's wrong with me, no one knows what the cause is.
It must have been very painful, but on the other handfrustrating …
Yes, it was really hard for me. I had a colonoscopy twice and I heard twice that I was not serious because I came unprepared for the tests, and a week before the test date I was taking only liquids.
At some point I started to believe that maybe there was something wrong with me, that I was the problem.
So you got so overwhelmed and started blaming yourself?
Yes, I was torn. I only heard from the doctors that it was my fault, so I started to wonder if I had imagined it. It was then that I decided to do whatever I could to find relief. I tried meditation, yoga, read and searched for any information just to relieve myself. The microbiome and the latest medical achievements were my passion.
When did the tunnel light come on?
Finally, I found a doctor who was like an angel for me. He restored faith in himself and in a better tomorrow. He said something might be wrong and I needed to be taken care of. In this way, I was taken to the hospital again and only there was I diagnosed.
What was the diagnostic process like? Only research was enough?
I had a specialist examination, but a resection was necessary.
Why?
One of the studies was that I had to swallow special markers to show how my intestines worked. During this time, doctors measured the time it took for them to travel through the entire digestive system. They showed that my digestive tract was not functioning. At some point, the markers stopped and even started to move backwards.
So the doctors decided to undergo the procedure.
Yes, and suddenly the narrative changed, because there were questions about how I could endure so much, so many years of living with it. And I tried to fight the pain to such an extent that by eating he althy, I got great blood results. He alth was everything. My body functioned so well that at the university hospital, they wanted to know how I do it, because I am an example for dietitians who shows an emaciated person, but the best nourished, with the best parameters of individual examined units.
And the Lady did it to ease her pain …
I did it to help myself in a human way, because I had no medical help, so I told myself that I could do it, I motivated myself as much as I could.
What happened next?
After the surgery, I came home and my life changed. After a month, I got histopathological results.It turned out that my intestine was constricted, that it lacked innervation, that it was Hirschsprung's disease.
After many years, you received the diagnosis you wanted.
I learned then that a person is born with it and is diagnosed immediately after birth and operated on. The toddler returns home and functions without being aware that he has ever suffered from such a disease.
Unfortunately, no one has actually diagnosed you …
I lived for 26 years with an inactive intestine. When I left the hospital, I cried. To this day, I do not know if it was due to emotions or joy, but at least I had absolution, an excuse that it was not my fault, that I did not make it up. The diagnosis was like a reward for those years of struggle. I remember that even in the hospital, before the operation, I had an interview with a psychiatrist.
What did you hear?
When the visit was over and the doctor closed her notebook, she grabbed my hand, looked me in the eye and said that she admired my stubbornness and bravery, and half of the hospital should follow my determination and will to fight my life.
Finally someone said that you are not the problem.
After all, that's an apt term (laughs). These words really stuck in my memory and gave me strength to continue the fight. I realized that you must never give up, that sometimes you just need patience.
You just have a lot of patience, because I am convinced that few twentysomethings could take as much as you could.
Thank you, it's very nice.
In retrospect, what was the worst - pain, lack of diagnosis and proper treatment or maybe the lack of faith of medical authorities in your words?
Probably the most difficult was the last one. Nobody took me seriously. After the colonoscopy, where I worked with my doctor without anesthesia, it turned out that the intestine was unprepared. Then, with the results, I went to another specialist who looked at me as a frivolous person. Nobody knew how to help me. Back then, I dreamed of having a normal digestive tract.
In these difficult moments, did you have support in your loved ones?
Fortunately, I have a wonderful family that have been totally supportive of me. We are all close to each other. My dad was a huge support for me, he supported me in everything, but I lost him in one evening. His death showed me how fragile life is.
Did your dad support you in your fight for a proper diagnosis?
No, my dad left when I was 21. His death taught me to appreciate the moments thatyou have to fight and not give up, so I made the assumption that whenever there is an opportunity, take it.
Because it's better to regret doing something than to wait idly?
Yes. Life is fragile, I know it best. Therefore, instead of wondering whether it is worth it or not, it is better to say "I love you" or "thank you" or "I'm sorry" when you have the opportunity, because life is only one. You should appreciate and support, not judge.
It gave you strength to fight in search of diagnosis?
Yes, and today I know that I managed and I am proud of myself, although the road was winding, but I am where I am. I have gone through more than one diet, I have tried everything. Once I was on a diet that consisted of eating only broth. Later, one product was included in the diet each week. First a carrot, then a piece of meat, and product by product. For 4 years I did not sleep a single night because my digestive system did not allow me to do so. I was like a vacuum cleaner without a garbage bag, so what I ate just passed through me in 2-6 hours. My true strength gave me the support of my beloved and his faith in our better life. The help of people I met on the Internet is also invaluable. They were the ones who motivated me not to give up. I had someone to live for.
It's hard to function normally when you keep thinking that I will need a toilet in a moment.
Sometimes I had to use it up to 20 times a day. Each of my meetings outside the home was preceded by concerns about where the toilet is. I was still losing weight while eating, so I used nutritional supplements and supplements, and yet I reached a tragic weight.
Tragic weight is?
The least weight was 31 kilograms, but it was only weight, the worst was suffering and helplessness. First constipation, then troublesome diarrhea. 26 years of going to gastroenterologists, examinations, expanding my knowledge - this was my life.
The very term stomica reminds me of a strong and brave woman. Can it be said that your stoma has given you strength? Are stomics the kind of strong people who don't give up?
I've been thinking about it recently. Even the very word stoma sounds so lofty. For me, it is a bag that you must always have with you. But you are right, because stomics are women who take handfuls of life and live 100%. They are people who want to act, often no longer living only for themselves. Women who have a baggage of experiences with them.
The group also gives strength, right?
This group was minescreaming for help because I knew I couldn't handle it. I work in social media and finally in January this year I decided to share my problems. I have received more from people than I could ever dream of! I received support, friendship and faith that there is something to fight for. I also met a doctor who believed in me and thanks to him I decided to go for parenteral nutrition, and then for a stoma.
Do you feel grateful?
Of course, I will always be grateful to people for that! In the hospital, after my stoma surgery, I got a fever of 40 ° C and thought I would never get out of there. I was lying without strength, energy and only praying. I asked God to help me come back home, and I will live with all my strength and no day will be lost anymore. In those worst moments, I thought that if I succeeded, maybe I would start a charity organization or organize meetings to help others and show, at least through my history, that you must not give up in life. I was able to go out and thanks to the stoma I have a new life and I also got a new family. I found a foundation and met other ostomates who inspire and motivate me every day. We have a group where there are no stupid questions. There is respect and help. There are tears and joys. We are all warriors. Today I live with my stoma, and it is functioning, always having a small cosmetic bag in my purse for the rescue.
So?
This is a backup kit in case the bag is changed.
Do you often have to use it?
Mainly in summer, when the skin is sweating and the glue can't stand. Sometimes there are other situations, such as chafing or eating something that will harm us, and then a leak may occur. Burns are painful, but it is impossible to live without a pouch, so despite the pain, you have to stick it on. The worst thing is to detach at night and you wake up with such an unpleasant surprise. It is very important to choose the right stoma.
Did you have training in the use of your stoma after selecting your stoma?
Yes, but it was only one demonstration on how to set up the system. More education is needed, because beginner ostomates have problems, for example, with choosing a bag or chafing. I think that little is said about it and we need the support of the medical community in this aspect. If it wasn't for our group, I would not be able to choose the right bag either. Due to the fact that I work on the network, people with different questions come to me every day, so I try to help as much as I can. I also decided to help the foundation, where I educate, show and motivate. I want to disenchant my stoma.
What group is in contact with youthe most common?
These are children of ostomates or their mother.
People don't realize that although the stoma affects individuals, it can actually happen to any of us. It can meet parents, but also their children. The stoma is used in intestinal diseases, after cancer surgery, even after having a baby, when it has to be inserted for several months.
This is a surprising answer. What are they asking about?
Most often about how the parent is to function with a stoma at all, because he came back after surgery and no one explained why dad has it, how to eat, how to care for it and how to replace it.
So from the stoma's point of view, these are obvious issues.
Yes, it's everyday life for me, but many people are initially overwhelmed by a stoma, because they had their lives one day and a completely new situation the next.
Could education change this state of affairs?
Of course, you need to talk more about it, especially loudly, because today the stoma has bad associations, and it shouldn't be like that. Every stoma should be able to freely go to the beach without the eyes of others, without being judged. For example, while on a train, a person should not be ashamed, say that he needs to sit down because he has an ostomy and he will not be able to stand the entire journey while standing. Often we also need to replace a full bag and we have to use the toilet. Your stoma often makes loud noises. It would be good if we didn't have to explain ourselves and be ashamed of it.
Unfortunately, many people probably don't even know what a stoma is …
Exactly, and questions arise as to what it is for, what it is for. As I already mentioned about this cosmetic bag with a spare kit. As a woman, no one will pay attention to me, because it is a typical female gadget, but a man? It's not befitting. And if he looks he althy, why give him a seat? It is very sad. We look the same as other people, but we have different needs.
Where else do you see problems in the everyday life of the stoma?
A big problem that I don't talk about at all, and which I have also encountered, is the limited access to stoma underwear or clothes such as trousers.
Does it mean that it is not available in Poland?
My first sets were brought to me by my sister-in-law who lives in Great Britain, there is a huge selection of not only clothes, but also helpful gadgets. A bit different world.
Is having a stoma itself associated with any uncomfortable situations?
At first I didn't realize it, because I don't have this problem becausemy stoma works quietly, but there are times when some of them just make noises and hear loud gurgling when food is released. Then the stoma becomes embarrassed because it's silent and suddenly there's this sound, and this can happen anywhere, even standing in a line, taking the bus or train, in the waiting room, or in the classroom. I know that many people are very embarrassed in this situation and stay at home.
Have you had problems accepting your stoma?
I am a slim person by nature, with red hair, so I catch my eye. I had a problem with people paying attention to my appearance in a negative sense.
These are not nice situations when someone tells you that you are too thin, that you look like a coat hanger, a wreck of a man or your body is just skin and bones.
Cosmetics and make-up are my passion, so I decided to work in social media, doing makeup, on which I initially did not show anything except my face and arms. I thought I would hide like that, but it didn't help, and I got comments about my body and appearance anyway.
Are you ashamed?
Yes. There were moments when I wanted to curl up into a ball and hide from the whole world. For example, when I was working in an office, I had to keep the dress code. One time I went to a store where I wanted to buy elegant clothes. It was an expensive store, so I didn't even expect what would happen, because usually the people who work there are very nice to the customers in such places.
What happened?
When I asked for a smaller size of clothes, a saleswoman looked at me and said that this is not a children's store, but a women's store. It hurt me a lot, because I wanted to do my shopping in peace, but unfortunately such an unpleasant situation happened to me. I still have pre-resection clothes in my closet. I keep them hoping the kilos will come back.
I believe it will happen.
That's why I'm fighting to show that a woman can look beautiful every day! Both with makeup and with a styled hairstyle, but without it. Beauty is not what we look like, but how we perceive ourselves. If you feel beautiful, then you are beautiful. I wish every woman would understand this. This is my mission. Now the body positive culture is becoming more and more popular. Stretch marks, obesity and cellulite are already accepted, but we as a country are still very far from this acceptance. I experience this myself every day when I get unpleasant comments about my appearance.
How much time did you need to accept your situation?
It's not about accepting the current situation. I just started a new life with a stoma that I got for my 30th birthday. Sometimes there is a day when, for example, I have a whole night without sleep, because my digestive system is still unstable. Then I have such moments that I want to spend the whole day under a blanket and not get up. I will lie down there for 5 minutes and get up because I know it won't do anything. I tried and I definitely prefer to act.
What do you help then?
At such moments I go to the bathroom, take a shower, put a mask on my face, turn on the music and I am a new man who now thinks that a new day is a new card to write down and it is only up to me how he survives it, because even if it's bad for a few hours, it won't always be like that. After all, you can do something good every day, if not for yourself, then for others. It also gives me a lot to write three simple sentences in a notebook before going to sleep, for which I am grateful.
You can count on the support of your loved ones. This helps a lot too, right?
Support for loved ones is very important, because even the awareness that someone is on our side, that someone warmly thinks about us is important. When I'm having a bad day, I call my mother and talk about it, and she replies that she understands that it's only one day for me to remember that she loves me. I'm feeling better already. My partner is also an amazing support for me. Even today he saw me in the morning and saw that the night was hard, so he looked at me with tenderness, hugged me and told me to lie down again, because when I get up, I will wake up with new energy. He was right. Our support group is also wonderful. I spend hours each day talking to other ostomates. We plan various activities, meetings and workshops. We have a series of webinars and weekly meetings in various cities. Such support gives me strength. Strength to live. That's why I talk about it out loud on my social media.
STOMAlife FoundationThe STOMAlife Foundation fights against social exclusion affecting people with an ostomy. The aim of its activity is to break the taboo related to life with a stoma and educate the public about facts and myths related to it. The mission of the organization is to build understanding and social support for ostomates, and above all, to change the attitudes of people with a stoma towards acceptance of their life situation.
Exactly - strength. Many ostomates stay at home because they are simply ashamed. Is there anything you'd like to tell them?
Try to talk about it because having a stoma is not a punishment. If you come to terms with the new situation,everything will become easier. After all, it's up to you how others perceive you. You are the whole thing, not just your disease. I'm sure you are an amazing person and have a wonderful story that you carry with the bag. It is enough to look at it from a different perspective. Treat like medicine.
My stoma gave me life, thanks to it I can work. It can give you something else, but life, so don't miss this chance.
More about Agata
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