Ola works as a transport specialist in a corporation, on weekends she helps her husband in running his business, in addition to being a make-up artist, she devotes her free time to her children and family. She lives very intensively, she is moving now and, as she says herself, she has no time to think about her illness.
How did you start to wonder if there is something wrong with you?
In the third year of engineering studies, my stomach started to tease. It was paroxysmal abdominal pain, I was not able to control it with any medications. It was a pain that I can now easily compare to childbirth. I was screaming, I was crying from the pain. Usually these ailments lasted for half a day, then passed, gave me a break for a while, and then came back again. It made me think that something was definitely wrong.
Have you had no abdominal symptoms before?
As a child, I always had gut problems, at first I thought it was irritable bowel syndrome, so I was careful with my diet. However, what started to happen in college was concrete. After my third year of studies, I wanted to find a part-time job. I went to a company for a trial day, and then I was in such pain that I was afraid that I would not get home.
The next day I went to my gastroenterologist, who has been guiding me for about 10 years due to a previously diagnosed lactose intolerance. He did an ultrasound for me, then said there was probably something wrong with my gut and put me in a ward at the hospital. There, I had gastroscopy, colonoscopy, enterography and all blood tests. It turned out then that it was Crohn's disease.
Have the doctors talked to you about this disease, chances, possibilities?
In general, it looked like the doctors only made a diagnosis for me and I received information that I would not be treated with the strongest drugs from the beginning, i.e. immunosuppression and steroids, but we will only start with the so-called sulfasalazine, or weaker drugs, and we'll see how I respond to them.
Have you heard of this disease before?
I didn't know what kind of disease it was. I didn't realize it was serious. I remember,only one of the nurses told me that my life would change a lot from now on. And that's it. That was all, I was instructed to sign up for a gastroenterology clinic, control my disease, take medications, and then I was discharged home.
Were you looking for information about your disease on the Internet?
Not knowing anything about this disease, of course, I started looking on the Internet, where it is described in the worst possible way. Now I know that this disease can be of varying severity. In my case, the disease is usually mild, and what I read about it then made me stay in bed for two weeks, but cry.
Which section of the gastrointestinal tract is affected by the disease in your case?
I have a problem with the ileum.
How did you pick up, move and move on?
In fact, my grandmother gave me the greatest kick when I was sitting at home and crying. My grandmother came and said: "You've already cried, now you have to get a grip, you have to go on."
Support is always important, especially in such moments we need someone to be close to us …
Yes, it gives a lot here, especially in the exacerbation phase. I also get tremendous support from my husband and my parents, for which I am very grateful. In an exacerbation, when I was unable to work because I had been off work for almost two months, my family never complained about it being worse and they always traveled to hospitals with me.
These exacerbations are manifested?
First of all, I never know when they will appear. For about 8 years, I actually had two exacerbation episodes. I managed to overcome the first of them on my own without invasive measures. I am lucky to have a mild form of this disease, in my case it is manifested by abdominal pain and vomiting. Fortunately, I have never had a diarrheal form like the others.
How long did it take?
2 months.
It's been two months of uninterrupted pain?
No, it hurt alternately, fortunately it gave me moments of peace.
And the second exacerbation?
The second exacerbation was after the pregnancy, it was so strong that I had to switch to steroids, which I had been taking for almost a year. Fortunately, they were able to calm them down with quite mild steroids. I got Entocort.
Have you had side effects after medications?
Yes, I had trouble falling asleep.
You are after the birth of your baby. Were there anycontraindications for becoming pregnant or endangering you or your child?
There were no contraindications to pregnancy planning. I got pregnant in remission, it was a deliberate decision, my husband and I knew it was a good time to have a baby. I had an increased risk pregnancy which was not directly related to Crohn's disease. There were also complications in childbirth, because in Poland, gynecologists insist that she gives birth naturally, while gastrologists say that it is safer for the mother to have a caesarean section.
There is a tear - who to listen to?
Yes, it was tough. Fortunately, I have a reliable gastroenterologist whom I trust and decided to have a caesarean section.
Is this disease hereditary?
Luckily it isn't.
You mentioned diet. Are there any top-down dietary recommendations for this disease, but should you check yourself what is allowed and what is not?
In fact, there is a general determinant of a diet, but it has not worked for me. I have many friends with this disease, I met them on various forums, they also eliminated various products by trial and error.
And what products harm you the most?
Definitely meat. It causes inflammation in me. Plus some milk.
So the diet is very limited. How do you deal with it?
I got used to it already. I have to take medication at certain times, I have to be careful with my diet, but I don't feel very limited. I live a very busy life, perhaps more so than people who are perfectly he althy.
So it's possible to live with it. Do you have frequent exacerbations now?
Now I have no problems unless I give up my diet - then I have to endure it. Besides, it's not bad.
The disease has not taken over your life?
No, but I had to comply. But there is nothing more important to me than having breakfast, because I have to take medication. I also have to prepare my own meals for work, because I cannot, like my colleagues, order ready-made food. But that's ok for me.
What would you like to tell people who just heard the diagnosis?
First of all, through our interview, I wanted to show that it is possible to live with this disease. It is also important not to read information on the Internet as it is scary. I recommend that you seek advice from people who have been ill for some time, look for good specialists. I also use herbs and various supplements that help me. Another thing is to reduce stress, because it, in turn, ismay worsen the symptoms of the disease.
You found support from people who also live with this disease. How did you find them?
I found these people on forums while searching for answers to my questions. We exchange information all the time, meet and help each other. Unfortunately, few people admit to living with this disease, and there are more and more of them. However, it is important to inform about the fact that you are sick, I think it is easier for others to understand what you are struggling with.
Author
Marcelina Dzięciołowska Editor for many years associated with the medical industry. He specializes in he alth and an active lifestyle. A private passion for psychology inspires her to take up difficult topics in this field. Author of a series of interviews in the field of psycho-oncology, the aim of which is to build awareness and break stereotypes about cancer. He believes that the right mental attitude can work wonders, therefore he promotes professional knowledge based on consultations with specialists.