When she said she had a stomachache, her parents were sure she was faking it. That she doesn’t want to go to school. It was only on the 12th birthday that the diagnosis came – Crohn’s disease. Then there were hospitals, treatments, pain. Today, Jesika Suchowiecka has an ileostomy and is enjoying her life. But he cannot accept the Ministry of Health’s draft changes, which are aimed at limiting the access of ostomates to the necessary equipment and specialists.
- It’s like having mild diarrhea all the time. I will eat something and everything goes straight to the sack. When I eat soup, I can not finish it, and everything I have swallowed so far is already in the sack – describes Jesika
- The stoma does not interfere with her daily functioning, she can insert the pouch in eight minutes
- Biggest dream? Kid
- More current information can be found on the Onet homepage.
Magdalena Łyczko: Your health problems began in your teenage years. How did adults respond to symptoms?
Jesika Suchowiecka: At first, I had severe stomach pains that doctors attributed to laziness. They said that I was making it up, because I don’t want to go to school, only when one day I had a sea of blood with my anus, my parents took me to the hospital. From then on, it was known that something was happening and it was not related to the desire to skip school.
Sometimes it is difficult to diagnose the disease. How was your case?
Before I found out that I was sick at all, I was suspected of having appendicitis. I visited several specialist doctors, and one of them referred me for gastroscopy and colonoscopy. The final diagnosis – Crohn’s disease – I heard a year after the first symptoms, exactly on my 12th birthday.
Were you referred for a specific therapy right away?
No, for the first two years in one of the hospitals in Kielce, I was treated conservatively, only when I came to Łódź, to the Polish Mother Center, I received biological treatment.
Was the mere fact of discovering the cause of the ailments something of a relief or a terror?
I was not aware of anything, the diagnosis meant nothing to me. My mother, I remember, asked a lot of questions to the doctor, and then she interviewed the family if anyone had such a disease, but no one had suffered from what I had before.
How did teenage Jesika deal with her intimate ailments?
I was ashamed – you know. Especially to show doctors what the sick part of my body looks like. Each visit was under a terrible stress. At the beginning, I approached it as it is. I focused all my attention on supporting my family, because their suffering seemed greater than mine. It was extremely difficult. The hardest thing was for my mother, who was with me and for me – always and everywhere. With time I got used to spending a month in hospital and a month at home. As much as I could, I functioned as much as possible, I was always happy about the coming summer, because it was the only moment when the disease did not show any signs. When fall and winter came, I was either bedridden or to the toilet.
What was the worst period of illness?
The hardest part was when I stopped being a child and they put me in the adult ward. I did not endure loneliness because my mother was always there for me.
In high school, when the first loves appear, etc … Let me put it straight, it was not easy. Fortunately, I had a group of friends, both girls and boys, they knew about the disease and they supported me very much. When you are sick, the most important thing is your psyche so as not to break down, and they have successfully built it up for me. It was hard when I was taking steroids, because in two weeks I was able to gain 10 kg – then at school they asked what happened to me because I was swollen like a balloon.
Now, after four surgeries, I think it will be harder with each subsequent one, because I know what such a procedure involves.
What does it involve?
With awareness of post-operative pain and recovery. Each subsequent operation puts a heavy burden on the whole body and the skin, which is already cut and tired.
Check the condition of your intestines. Perform tests that will diagnose or rule out diseases. Order a blood test for gut health.
How did you feel during the treatment?
When I was taking “biologists”, I had no symptoms, the disease disappeared. When biological treatment ended, I caught E. coli and my health collapsed like a house of cards. Moments later, I got biological treatment again, but my body did not respond as well as the first time. The treatment reimbursement has expired and the search for new solutions has begun. It turned out that my anus was narrowed, hence I was so constipated. I underwent a procedure aimed at widening it, but it took two or three months and it was overgrown again.
What does everyday life look like when the disease exacerbates?
Lack of appetite and endless diarrhea. At the beginning, I thought that I would be able to do it, I will survive for a few more days. I was lying in bed and by all natural means I tried to alleviate the ailments. The narrowing of this anus was the worst, I was going to the toilet and there was nothing I could do. I was inflamed inside and out. Unfortunately, in such a state it is impossible to avoid the hospital. After a week or two, I couldn’t cope anymore, I screamed in pain and, as my mother says, “I bit the floor”, I gave up because I knew that I would not win in this fight. Then my mum helped to get into the car and took me to the ward.
They put you on your feet in the hospital.
The hospital was a godsend for me, because after just three days of enteral feeding, I felt real relief. I felt that I made the right choice, if I hadn’t continued eating or drinking – I’d just be exhausted.
When was your stoma selected?
A few days after the 18th birthday. I was glad because I knew that the operation opened a new chapter in my life. I was not ashamed it would be a bag. I knew I would have a different body, but the only thing that kept me sane was that it would ease me. Unfortunately, they cut out too few sick lesions for me and everything started all over again. There were abscesses, blisters around the stoma, and the stoma itself began to collapse. Initially, doctors thought that the intestines were arranged after the procedure. But it was a time when I had such pains that I passed out, took eight painkillers a day and nothing. Hospital again. They did a colonoscopy and it turned out that the intestine is affected by the disease. I had no choice but to agree to another operation. Then they cut out my entire large intestine and gave me an ileostomy. I was crying because I had explored the topic and knew it would be a bit harder, but I was aware that in the long run I couldn’t live in such pains.
Then I had my first serious boyfriend. The disease changed my life plans …
Have you split up?
Yes, and a month later I met my current husband.
Have you been learning how to operate your stoma for a long time?
A little over three weeks, and then I begged my mother not to think about a stoma, but to let me go to green school with my class. You may not believe me, she agreed!
Who changed the first bags and how long did it take to select the equipment?
I immediately wanted to do it myself. Of course, my mother supported me, she suggested what movements the nurse was making, finally I found my own way to make the bag comfortable for me. You know, there were mishaps, but I learned a stoma, I could recognize the moment when there would be a bowel movement, how to deal with it, especially when I was away from home at THIS moment. The disease makes him mature faster, he wants something completely different from his peers.
Meaning?
My friends were having fun, planning their studies, and my goal was the family.
Was this plan successful?
Yes, I have a husband. We met during a barbecue organized by my friend’s older brother. Some of his friends came, one of them caught my eye. It was a month after my second surgery, and my stitches fell apart, I had a hole in my stomach and I was covered in bandages. I don’t even know how it happened that I had the courage, but the day after the meeting I wrote to him.
I…?
We made an appointment next week. Before that, I told him I was sick. I explained how it was that I was just after the operation and although I feel good now, in six months it may be that I will be in bed and I will not go anywhere.
How did he take it?
He had no problem with that. He said he accepts it. He supported me and still does, he is very protective. When I was hospitalized, he would leave his job and come to see me, even if only for a moment. He supported me as best he could.
If time could be turned back, what would you have done differently?
I wonder … I would like to know how to deal with the disease. I don’t know, maybe if I had fought more for reimbursement for biological treatment, I would be in a different place today. I trusted a doctor who said: stoma, and after half a year I will close it, because inside it will heal … But he forgot that there was no chance of enlarging the anus. I believed him. Today, after 10 years of illness and many different experiences, from immunosuppression to steroids, surgery and stoma, which was the last resort.
How can you describe the difference between a colostomy and an ileostomy?
A colostomy is a bit like a healthy person. You have a bowel movement once or twice a day and the stool is more formed, and with an ileostomy it’s like having mild diarrhea all the time. I will eat something and everything goes straight to the sack. When I eat soup, I can not finish it, and everything I’ve swallowed so far is already in the sack. You have to stick to a diet and a number of rules.
For example?
Do not drink before, during or immediately after eating. This can be done 30 minutes before or after eating. I threw corn and popcorn from the menu, because they have a filling effect.
How about physical activities?
The most important thing is the choice of ostomy equipment, not sports equipment … and you can do whatever you want.
How much equipment and money is needed to function with a stoma?
If we assume the optimistic variant, which is rare in life, i.e. no mishaps, leaks and mistakes when putting the bag on, I spend a minimum of PLN 60 a week, i.e. I use two or three bags. I always choose cheaper ones, the cost of one is PLN 20, but there are those that cost up to PLN 40 per item! In addition, you need to add sealing paste – PLN 50, wipes, which have a special composition and allow the stoma to be rinsed without irritation – PLN 5 each, I use alternatively with a “second skin” spray – PLN 25.
What if we assume the pessimistic variant?
When my stoma was collapsing, that is, on one side everything was fine and on the other side it wasn’t, I tried my best. I broke my life record once: I used 18 bags in one day! I didn’t even leave the bathroom, I sat and changed again and again.
Is the current funding for ostomy equipment sufficient?
The limit I have, PLN 400 for equipment, is nothing. These are not whims, I don’t know what comforts, but things that I need in my daily life. It’s a bit like someone restricting mothers from using wet wipes and offering a newspaper instead. When going to the toilet, did anyone wonder what he would do if access to toilet paper was restricted in stores? No, that’s why I don’t want such restrictions either. Now that I have a fistula, I have to change bags more often because something is still leaking.
If it weren’t for our Facebook stoma group and the STOMAlife Foundation, thanks to which you can always receive mental support and often also bags, I don’t know how I would be able to do without it. As even greater restrictions go into effect, you’ll soon find out that you first need to be a millionaire to live with a stoma.
How long did it take to insert the pouch while learning how to use the stoma, and how long does it take now?
In the beginning, it meant half an hour or 40 minutes relatively quickly. Now? I know exactly because I was recording an instructional video for a friend who had an ilostomy – eight minutes.
A dream for now?
I miss a child to be completely happy. I wish I could travel and show him the world. I like Greece and Italy because my husband proposed to me there.
The interview was created as part of the Stomia Symbol Zwycięstwa project carried out on behalf of the Foundation STOMALife.