At first, when she forced herself to touch her own body, she passed out every time. Today she says about the stoma: it is cuddly and delicate. Before that, it was a piece of intestine on the belly that was limiting and frustrating. Weronika talks about the disease honestly and directly, because she is no longer ashamed. He is also not ashamed to express his loud disapproval of the draft ordinance of the Ministry of Health (MoH), which, if it comes into force, will reduce the limits on equipment and limit access to specialists. In an interview with Magdalena Łyczko, he tells what the stoma needs, what life in the new reality looks like and how much the stoma costs.
- – I was not mentally or physically prepared for this. The first reaction is why is this something ?! First, I was angry with me, and then I became hysterical – reports Weronika
- – When I thought that I was supposed to go out to people with it … But you can’t do that, you can see it, you can feel it … It was a total horror – he says
- According to Weronika, you can get used to the stoma, and over time, changing the bags is getting easier, but life in the new reality is still a huge challenge
- Just like the costs incurred by the stoma, especially in times when the National Health Fund wants to reduce the reimbursement of equipment necessary for the daily functioning of patients
- You can find more such stories on the TvoiLokony home page
Magdalena Łyczko: How did your story with the stoma start?
Weronika Wójcik: For six years, I struggled with back pain. My ailments did not quite match my previous imaging tests, and we decided with my physiotherapist that it was necessary to repeat the tests and take some action. So I did. Today, I must honestly admit that my physiotherapist saved my life, because he forced me to do research. A routine spine MRI scan early last year showed I had colon cancer on board. I knew it could mean living with a stoma, but I didn’t really get attached to that thought because I didn’t want it. As a result of unexpected complications during the operation, I had a colostomy. I woke up with a pouch on my stomach.
How did you react to that?
I reckoned with a cut through the entire abdomen because doctors warned me that laparoscopy might fail, they also said that “if something went wrong” they could produce a stoma, but they assured me that I had a supply of the intestine and the stoma would not touch me. I believed it and with such awareness I closed my eyes on the operating table. When I woke up, I checked my abdomen – there wasn’t a big cut, but as I moved my hand down I realized I had a stoma. It was a shock. I was not mentally or physically prepared for this. The first reaction is why is this something ?! First I got angry and then I became hysterical.
Someone talked to you, translated?
Yes, a doctor came right away, who explained what happened to me in a “medical” way, and today – in retrospect – I think that, unfortunately, nothing of it reached me then. Then, during the days of my stay in the hospital, the nurses tried to bring the new reality closer. My horror was so great that during the whole stay in the hospital I couldn’t even touch the place where the stoma was. It is known that the abdomen was swollen, all seams, and the stoma also looked different than it is now – it all added some extra drama to the whole situation. For me, it was something I couldn’t come to terms with.
How did you manage to accept your stoma?
I have a great psychologist who helped me through this. He suggested that I stop fighting it and give myself the right and time to get used to the new situation. I was still in the hospital, I was cared for and I hardly had to deal with my stoma. I wanted to accept it, but the content in the pouch was like water, and the feeling of overflow in my stomach was off-putting. When I thought that I was supposed to go out to people with it … You can’t do that, you can see it, you can feel it … It was a total horror.
Some of the staff were helpful, but comments started coming in from a few people like “you have to live with this, so get a grip.” When I forced myself to touch my body a few times under the influence of these remarks, each time I ended up fainting.
When did you break through?
After returning home. I tried to get used to it and in fact the day came when I said: cool, it’s not that difficult. I did this two weeks after I left the hospital. I knew how to handle an ostomy, stick a sack and I admit that with each passing day my life began to normalize.
Have you felt relieved?
Unfortunately, for the first few months I had chemotherapy. It is known how the body reacts to chemicals – diarrhea and other stomach ailments appeared, which in combination with the stoma was very difficult. Often, in one attempt to change the bag, I had to destroy three or four, because I did not have time to replace it. It was a nightmare, and I had bag limits.
When I tried to return to work at my company after treatment, another problem arose: I had the impression that everyone could see IT. There was a hernia around the stoma, so in fact the stomach was sticking out. Again, I felt that my stoma ruined my life, I couldn’t put on my dress because it shows etc. I wanted to go to the swimming pool, but I was paralyzed by the fear that the bag would peel off. The bag packed for the swimming pool lay for two months in the hall, and every day I said to myself: tomorrow I will go. Until the day I actually did it.
What did he look like?
I remember that the weather was beautiful that day. At the pool, of course, I would jump out of the water every five minutes to check that the bag was in the right place. It was difficult, but when I went to change it after an hour, it turned out that it couldn’t be removed at all! The first thing I did was, I happily called my mother and my aunt, shouted into the phone that I could go to the pool. It was a landmark event. From that day on, a lot of stress and anxiety came off me, I proved to myself that I can swim. I also started telling my relatives that it is possible to live with a stoma somehow.
How are you today?
Being aware that I have bags, I can deal with them, I know how to deal with emergency situations, I think I am doing very well. I approach the stoma with less emotion. I would tell everyone that you can not only get used to it, but also live with it.
What was the bigger shock: cancer or stoma? Can these two things be compared at all?
The stoma was the worst, because the issue of cancer had appeared many times since the beginning of the diagnosis, although it was difficult to locate it. When I found out that my colonoscopy showed a cancerous lesion, I left the office without any surprise or disappointment. There is a lot of talk and writing about cancer, so it does not arouse fear anymore – at least that’s my opinion. We know people from the headlines who have had cancer. And the stoma? I think I saw a TV commercial once in my life and that’s it.
The rest of the text below the video.
Acceptance of a stoma is a long process. I know people who have never come to terms with her …
At first I felt that it was blocking me terribly. I tried to deal with it and finally realized that whatever was happening, I blamed it on my stoma right away. I thought “I can’t even go to the pool” as if the pool was at least my bed. I found that I had to overcome the obstacle. Today I feel happy and I don’t think of the stoma as a limitation. Now when I touch her, I think she is cute and soft. But before that, it was just a piece of intestine on her stomach. It doesn’t have the skin we have on our bodies, it’s just a piece of our guts.
How is this nice piece of guts cared for?
In order to remove the bag and not hurt yourself, you have to use the preparation, otherwise it will be painful. It’s a bit like trying to remove a patch from an unhealed wound – even if we do it gently, it will be very unpleasant. Such a preparation lasts for about two weeks. The price ranges from PLN 30 to even PLN 80. I admit that I have never dared to remove the bag without the preparation. After removing this bag, you need to clean the entire stoma, dry it gently and put on a fresh bag. There is a measuring cup in each bag, thanks to which you can measure the diameter of the stoma, because it is variable. After the operation, mine was 5 cm in diameter, and now 3,5 cm, because everything had healed.
Then you need to cut a hole in the bag corresponding to the diameter of the stoma and properly stick the bag from bottom to top, slightly stretching the skin. If there are any folds, there is no way the bag will hold on. It also cannot be peeled off and re-glued. All it takes is a bad day, a slight distraction, the wrong move and you have to start the whole process all over again.
Do you agree with the authors of the draft ordinance of the Ministry of Health, who plan to cut limits on equipment and access to specialists for stomics?
Absolutely not. Plus, the hardware limits are crazy. Only today I changed three bags, because there was such a need. It is impossible to walk around with a bag with half a kilo of contents in it … But there are days when nothing appears in it for three days. When I was taking chemotherapy, it happened that I changed 10 bags a day. I can’t plan for 10 days to use 10 bags because each day is different.
How many bags does the National Health Fund provide to the patient?
Since the beginning of this year, I have had a disability certificate, so there are a few more of them. Last year, I had a limit of PLN 300 per month. For my own comfort, only from March to December I spent 4,5 thousand from my own pocket on the equipment. zloty. Of course, these were not only bags, but also preparations for skin care, glue, powder – all this is very expensive and inefficient. People who are “healthy” and have control over the digestive system are able to tame the stoma, they are most often veterans who are for your brother with a stoma, because they have lived with it for many years.
There is a public perception that the stoma stinks. That’s true?
Modern bags have filters, and there are also droplets that are poured into the bag to neutralize the smell. When I change the bag in the bathroom, of course it smells. The same feeling in a healthy person after visiting the toilet. But when the bag is properly put on, i.e. it is tight, you don’t feel anything.
You’re talking about the stoma bluntly …
Because I’m not ashamed of her anymore. Once I was even afraid to go to bed. For the first few weeks, I slept on my back, at attention, of course with an undercoat on the mattress, I woke up every few hours, and after opening my eyes, I looked at my stoma to check if the bag was unsealed.
Recently, during a weekend trip, my friends asked me not to be nervous, because they will help me in everything. And me: girls, I have my stoma calmly, you won’t even know when. Then they asked – how is it? I offered to show them if they wanted to.
Wanted to see?
Yes. The fact that they already know what the stoma looks like makes it a little easier for everyone.
Were you able to get back to work?
Yes, and I adopted a strategy that I speak openly about the disease. Wherever I go, I know it can be funny or it can be hard. When I am honest, I do not expose myself to fear and embarrassment of others. Why would someone pay attention to me and feel awkward afterwards? When I go to a party or when I go out with friends, if necessary, I clearly communicate: sorry for gurgling, my stoma is going crazy today. The end. Everyone knows, no one asks stupid questions or comments.
How did they react at the beginning?
Extremely different. Some kept saying: “don’t worry, it’s not the end of the world!” Others pretended there was no topic and asked nothing or didn’t know they could ask.
Do you have any words of encouragement for people for whom the beginning with a stoma is just as difficult?
First of all, do not force yourself to anything and give yourself time. It’s a difficult experience. The operation itself is a burden, not just its result. Don’t fight back. Use help and not be afraid to ask for it. The stoma nurse can come home to explain and teach you how to use it. If someone does not feel that this is a good time, e.g. to change the bag on their own, do not try to break it by force. Test different ostomy preparations. I struggled with my stoma for a long time, because I did not even realize that there are many companies offering equipment and care products.
How did the immediate family react?
Very positive. They tried to support me. They said “don’t stress” – I was angry with them, I replied: it’s easy for you to say, because I have the bag, not you. To this day, when I have a bad day, I sometimes say out loud: this stoma pisses me off. Or: it’s hot again, the bag will come off, I’ll get my blouse dirty, to which my mother stoically says: “so what, you stick the other one and wash the blouse”. She was with me and is always on the front line. She listened to my malice: why me, why do I need this stoma, it is impossible to live with it, etc. My mother also exchanged my first bags. To this day, I receive enormous support from her.
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Upcoming plans for the future?
I am trying to come back to life before my illness. At this point, I focused on the preparation of environmental documentation for enterprises, because this is the subject of my professional work. I also come back to the topic of my habilitation with small steps, because it is my little dream. I want to live, enjoy and keep fighting, although I don’t like the word fight because it means win or lose, and I want to live as I used to, or even better.
In retrospect, I’m talking about a fight on purpose, do you feel like a winner?
Not. Talking about victory in the face of this disease is madness. And I don’t know if I ever dare to say I beat her. I have been in remission for 11 months and I will do everything to keep this condition as long as possible. I know from my doctors that it could be four months, a year, three or even 15 years. Nobody knows, and nobody knows why the disease returns.
But since everything is different in my life than usual, I believe that I will be able to extend this time of remission. So that doctors could tell patients: “four months, a year, three or even 15 years, and there are patients who have been in remission for 20 years” and motivate them to act. Because everything is in our heads!
The interview was created as part of the “Stomia Symbol Victory” project, commissioned by the STOMALife Foundation
We encourage you to listen to the latest episode of the RESET podcast. This time Joanna Kozłowska, author of the book High Sensitivity. A Guide for Those Who Feel Too Much »says that high sensitivity is not a disease or dysfunction – it’s just a set of characteristics that affect the way you perceive and perceive the world. What are the genetics of WWO? What are the perks of being highly sensitive? How to act with your high sensitivity? You will find out by listening to the latest episode of our podcast.