MARIJA PERKOVIĆ, ZAGREB
Marija Perković, a librarian from Zagreb, has years of experience fighting ulcerative colitis. Aware of the great importance of the support of one’s community and the fact that it is very difficult to get the right information, she was very happy to accept our invitation to an interview in hope that her story will help someone in a similar situation.
“I have been suffering from ulcerative colitis since 1993. I tried all the traditional medicines, but unfortunately, they did not have a long-term effect, which, after years of struggle, led to a colostomy surgery last year.
I actually studied to be a professor of Croatian language and literature, but doing this job was very stressful with my health situation. After realising that it was just too physically demanding for me to teach, I started working in the library. I found that I thoroughly enjoyed this job.
It is not, as people often think, just lending books. We also give recommendations for reading and organise many other activities — public discussions, promotions, activities with children and a new exhibition every month. I truly enjoy it, but unfortunately, I had to take long sick leaves for several times.In 2010, I was in a particularly critical situation — I stayed in the hospital three times for two months, fighting in every way to preserve my colon. My condition was so bad that the doctors wanted to remove it entirely and make a permanent stoma.
I just couldn't accept that back then. I thought — there is always the option of removal, but we still have time to try and do something to cure it. I asked for a second opinion and was proposed to try the hyperbaric chamber, which was at the time covered by the state medical insurance, combined with a high dose of corticosteroids. With this therapy, I was feeling well for a while; however, as a result of the long-term corticosteroid intake, my bones were severely damaged.
One day, as I was in the bathtub, I fractured two vertebrae by just bending over. After that, I wore an orthosis and spent three years on sick leave.”
Although the treatment in the hyperbaric chamber was followed by a long period of relatively healthy intestines, it unfortunately didn’t permanently cure ulcerative colitis. With the medicine Imuran, the remission lasted eight years.
“Everything was good until Christmas of last year. I stopped taking Imuran and started again with corticosteroid therapy. My state drastically deteriorated in August 2021 when I was hospitalised waiting for the new biologic therapy for the advanced inflammation.
Unfortunately, I suffered some damage during rectoscopy, after which I had a bowel perforation. What no one knew at the time was that I had a benign tumour on the uterus, which was revealed at a CT scan. The general examination that I was supposed to do a year earlier, which included a gynaecological examination, was postponed due to the Covid pandemic. Otherwise, I would have known about the tumour in advance and the rectoscopy would have been avoided. Unfortunately, several unfortunate circumstances coincided for me.
Now there was no other choice — the tumour was removed together with the uterus, the sick part of the intestine was cut off, preserving a part at the rectum to maintain the possibility of a future reconstruction.”
Since the possibility of a stoma had been discussed before, Marija had no major problems with accepting the situation, nor with getting used to her new digestive system.
“When I woke up, I wasn't surprised to see that I had a stoma. This time I expected it. Everyone tells me they are impressed with how optimistic I am. I always tell them that I simply have no other option! There’s no point in complaining because what I know for sure is that the only problem I can't solve is - pain. Everything I've been through all these years was bearable except for the pain!
The stoma is not a big problem for me because it doesn't stop me from leaving the house and doing what I want. The most important thing for me right now is that I can swim with a stoma, because I am looking forward to my vacation at the coast so much. I heard that there are stopa caps available for swimming, I can also buy a one-piece swimsuit, so my stoma will not get in the way of my summer plans at all – I can’t wait”! “Adapting my diet was also not a big problem for me because with ulcerative colitis I always had to be careful about what I eat anyway. After my ostomy surgery, people kept bringing me fruit baskets thinking that healthy food was good for me. I always had to thank them politely and explain: ‘I know it doesn't make sense to you, but at the moment I actually have to eat unhealthy.’ I was not supposed to eat anything that stimulates digestion or contains fibres.”
There are still many steps ahead when it comes to her treatment; however, Mrs Perković is motivated by the hope that her stoma is only temporary.
“Although the sick part of my intestine was removed, there is still the end that remains inflamed and infected with ulcerative colitis. Traditional drugs are no longer effective, so now I am waiting for the approval of my biologic therapy. The doctors have already mentioned the possibility of reconnecting the intestine and removing the stoma, but I don't want to rush anything. My priority now is my recovery. I have put all my hopes into the biologic therapy.
I have recovered very well from the surgery, and I quickly got used to stoma appliances. I am slowly getting my weight back to the old level. Because of colitis I am used to big weight oscillations, which is why I have clothes of all sizes. During the bad periods I used to lose a lot of weight, but it was all back as soon as I recovered. That’s why I couldn’t throw away any of my clothes, I knew I would need them all eventually.”
Over the years, Mrs Perković has gathered a lot of knowledge and experience in dealing with inflammatory bowel diseases. She cherishes every victory and every peaceful period in which she is able to enjoy life. Mrs Perković is especially happy when she gets the opportunity to help others. In conclusion she said:“I will be glad to talk to anyone who is going through something like this and is in need of support. I like to go to the site of HUCUK, the Croatian Association for Crohn’s Disease and ulcerative colitis, see what’s new and occasionally visit a lecture. If someone needs a conversation or a piece of advice, they can contact me via Lentismed and I will do whatever I can to help.”
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