There are as many stories about living with IBD as there are patients diagnosed with it. Living with Crohn’s disease can be challenging, but it doesn’t have to hinder your dreams. Despite the setbacks and uncertainties caused by the disease, Oona decided to study abroad on an exchange semester, exploring new cultures and creating lasting memories.
In the following months, GENEGUT will feature a regular series of patient stories, highlighting the unique experiences of people living with Crohn’s disease. Today, Oona Liikanen, Crohn’s disease patient and IBD advocate shares her story of studying abroad – despite the diagnosis.
I got my diagnosis back in 2018, when I had to go to the Emergency Room due to sudden, intense stomach ache, fever and vomiting. I ended up undergoing surgery and got left with a Crohn’s disease diagnosis and a temporary stoma all in just one week. I started azathioprine and since then I hadn’t had any major problems with my Crohn’s.
In 2022, I had been studying my Bachelor’s degree for a little over two years. I didn’t always know in what area I wanted to specialise, or what would be my main languages, but one thing I always was sure about was that I wanted to go on an exchange semester. The summer was starting, exams were done, I was about to start a new summer job in just a week… I had a lot of plans with my friends for that summer because after that I was finally going to go on my exchange in Belgium and leave Finland for half a year. But guess what?
After four good and steady years my Crohn’s popped back up again. It was the end of May 2022 when I got a high fever, intense stomach pain and everything I put inside of me came right out. Within a few days it went so bad that I had to go to the hospital. I ended up being there over a week because my whole large intestine was inflamed. I started biological treatment that started helping, and finally, the summer was gone and it was time to go to Belgium.
I have to be honest, I was scared. But, regardless of being scared, keeping an open mind, listening to your own body and feelings and being open about IBD was what really made my time there.
The decision to leave after such hard summer wasn’t easy for me or my doctors. In fact, we actually had many phone calls during summer regarding me leaving Finland. At that time I still had to go get the medication at the hospital, causing me intense headaches during summer.
All of these uncertainties were on my mind and my doctor was hesitant to let me leave at first as well. But by the end of summer, roughly only two weeks before my flight, we came to the conclusion that it was okay for me to go. I got instructions what to do if I got a new flare while being abroad, they prescribed me cortison tablets just in case and told me that it’s always possible to come back to Finland if I ever feel like it. After all the back and forth, I finally felt comfortable and a 100 percent sure that this was my dream and that I want to go.
My biological medication was working excellently on the inflammation but with it came other side effects that did, and still do affect my life. One of the worst is fatique. That feeling of tiredness is really hard to explain to others. It’s one of those things that if you know, you know. I have energy to study and work, to see people and do activities but that requires a lot of sleep and rest. And I think for a lot of young people it isn’t the case. Other students were able to go through the whole week on four hours of sleep while studying, partying, travelling and doing everything. For me a night out combined with studying and other activities requires at least twice as much rest and still I had to turn down a lot of plans because of the fatique.
Looking back at that time, after going through all the emotions, fears, and questions about not knowing what and who was out there, I couldn’t be more happy that I experienced it. I had bad days, tired days, days when I didn’t have an appetite, days when I wanted to give up and leave. Those days are nothing in comparison with the ones I spent with people from all around the world, learning about new cultures and languages. The days I spent with friends, visiting places, travelling, eating, drinking and laughing.
How did I build up the courage to leave and change my whole life for six months after all the uncertainties I had during the summer? I have to be honest, I was scared. But, regardless of being scared, keeping an open mind, listening to your own body and feelings and being open about IBD was what really made my time there. Only if you’re honest with yourself and let yourself open up to others, they are able to understand that even if it’s not visible, it’s still possible to be in pain or feeling sick.
From the author
Ooona Liikanen
As an advocate for peer support and raising awareness, feel free to contact me about any questions or concerns anytime via email [email protected] or Instagram DM @oonaliikanen. In addition to the exchange semester and being a young university student and seeking jobs, I have travelled and also worked as an au pair with my IBD.
"We want to thank Oona for sharing her story – it is great to hear that the Crohn’s Disease diagnosis did not keep her from studying abroad. With GENEGUT, we aim for this to be the reality of many more people living with Crohn’s Disease. This is why we are working to develop a new, orally administered and non-invasive RNA-based therapy for ileal Crohn’s Disease – minimising systematic side effects and improving quality of life."
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UK participants in Horizon Europe Project GENEGUT are supported by UKRI grant number 10042451 (Bangor University).