I’ve lived with Crohn’s disease since I was nine years old, but it took me more than ten years to come to terms with my disease. At first, I was just surviving day to day. Then, during remission, I didn’t want to think about it. Finally, I had to face how it has and will affect my life.
GENEGUT features a regular series of patient stories, highlighting the unique experiences of people living with Crohn’s disease. Today, Aleksi Hautamäki, Crohn’s disease patient and IBD advocate, shares his story of facing his life with Crohn’s.
I was diagnosed when I was nine years old. The first five years I mostly spent suffering from pain and being chained to the bathroom. There was a moment where I had my first effective medication, a biological one, but the dosage was altered, and it lost its effect. After that, my condition worsened drastically, yet the doctors did not believe how sick I was, because I always seemed fine. I didn’t show the pain on the outside, so they thought it didn’t exist. That’s why a second medication wasn’t started until it was too late. It had gotten to the point where, when I was hospitalised because of malnourishment, three doctors came to my bedside on a Friday morning and told me that if I wasn’t operated on immediately, I’d be dead by Monday. My colon was about to burst. They removed my colon, and I lived with a stoma for a year. Later, my small intestine was reconnected to my rectum.
After the operations, I could enjoy a “normal” life. I still had symptoms and needed medication, but the most infected part of my intestines was gone. For five years, I had merely been surviving day to day. I had missed so much that others my age got to experience. Now I wanted to stop thinking about my disease. Even though I didn’t suffer from Crohn’s like before, I could not escape from what it had done to me and how it would still affect my life.
When I started high school, life was great for a year. But gradually, everything started catching up. I had been isolated for years because of my symptoms. Being back in social circles was wonderful, but seeing other seemingly healthy people made me feel alone with my disease. Why did I have to suffer from it? The thoughts about how much I had missed because of it, and how it would continue to limit my life haunted me. Now, I was just trying to survive my thoughts. It started small, but soon my disease was the first thing on my mind when I woke up and last before I fell asleep. I thought I had no future, let alone one where I’d be happy. I fell into a deep depression and thought my life was over.
I almost gave up, but still wanted to try to finally face how much my disease had affected me and admit all the negative emotions I wanted to hide. I didn’t want to be angry, envious, bitter, as if admitting those feelings would instantly make me a bad person. I realised that I could only come to terms with these emotions when I accepted their presence. After ten years, it was finally time to reach acceptance. I had to face the fact that I would never live a truly normal, healthy life. But that didn’t mean my life was over.
With a psychologist’s guidance, I began to untangle my emotions. Medication helped steady my mind, allowing me to carry on. Peer support meetings made me realise that I am not alone. I began to feel better. I realised that I had not chosen Crohn’s, but I could still choose how to live my life. I could see tomorrow, next week, and after time, I actually managed to make plans and have hopes for my future. I saw that there was still so much I could do. Eventually, using my experiences to help others gave new meaning to all the challenges I had faced. I no longer felt my struggles were in vain. Two years after being at the lowest point of my life, I looked at myself in the bathroom mirror and realised I was happy.
If someone asked me if I wanted to get rid of my Crohn’s, I would answer yes, and I believe that anyone else would have the same answer. But if we went back to when I was nine and I could choose to remove my Crohn’s then, would I do it if it meant I wouldn’t grow up to be the same person I am now? Would that person share my values, my ambitions, and my desires? Would he be someone I would be proud of? I don’t know. Crohn’s has taken a lot from me, but it has also given me countless experiences and shaped me in ways that wouldn’t have been possible without it. So, would I change anything back then? I truly don’t know. I am happy now and am living a good life. That is all that matters!
From the author
Aleksi Hautamäki
Through my experiences, I have found work as an association volunteer, and an expert by experience.
In the Finnish association I’m part of the youth group and the vice president of our board. I am also part of the EFCCA youth group and represent the Finnish association in some of EFCCA’s events and projects.
As an expert by experience, I work in the healthcare sector, sharing my life story and experiences to educate and help others. I train doctors, give lectures, and work as a consultant on patient and care related matters.
I am happy to be a part of any project or task that requires the information and knowledge I have gathered. If you would like to get in touch, you can write to me at [email protected].
"Quote by Caitriona"
- Caitriona O'Driscoll, Project coordinator GENEGUT
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