Doinja has Crohn's disease. She has had symptoms such as stomach cramps and fatigue since she was 12, but it was only five years ago that she was diagnosed with Crohn's disease. The disease has had a significant impact on Doinja's life, but she is doing everything she can to continue doing the things she loves, such as playing tennis and working.
If your health is already getting in the way of your daily life at the age of 12, it has quite an impact on your life as a first-year secondary school student. She often had to cancel her football training because she was simply too tired at the end of the day. Or she would get terrible stomach aches or a fever. Completing secondary school was also not without its difficulties because she often had to miss lessons. While the average student of her age was worrying about completely different things, Doinja was mainly concerned with her health.
Diagnosis: Crohn's disease
Doinja: "As soon as I had symptoms, I kept going back to the doctor. Each time, he would refer me to the hospital. There, I was routinely told that I had IBD (irritable bowel disease) and then sent home again. I continued to go to the doctor when the symptoms worsened, but the hospital never took my complaints seriously.
When I was 19 I had a huge flare-up that left me unable to walk, so I went to the hospital by ambulance. The doctors first thought it was appendicitis, so I underwent keyhole surgery.
During the operation they saw that the transition from the large intestine to the small intestine was not functioning properly. A salmonella infection or Crohn's disease must have been the cause. After the operation I therefore underwent a colonoscopy.
The doctor told me he had bad news; it turned out to be Crohn's disease. Those words are the only part of the conversation that I remember."
Full of questions
"When I was diagnosed with Crohn's disease, I immediately had all kinds of questions, such as: ‘what is it?’, ‘can I live with it?’ and ‘how will things progress from here?’. I was in a bit of shock. At a later point, I got answers to all my questions from the doctor. Only then did I realise that I would never get rid of it.
During that time, I mainly focused on searching for reliable information. I spoke a lot with the doctor and a nurse and searched the internet. There is a lot of nonsense online, but I could trust the website of the Dutch Digestive Health Fund. I also benefited greatly from the stories and experiences of others, both online and in real life.
I have already accepted that I have had to adapt my studies to what I can handle. For example, I started the first year of secondary school at pre-university education level and then went down to pre-vocational secondary education. I have now completed my senior secondary vocational education (MBO) by home study. That worked very well for me. I could schedule my time myself, even when I was taking exams. But even that often took too much energy. After my MBO, I started working at a pharmacy, where I was given a permanent contract for 32 hours a week, something I am very proud of.
My biggest challenge was playing football three times a week. I loved it so much. We usually trained in the evening and the next day I could hardly do anything. Because I was constantly afraid of disappointing my team, I ended up quitting football and switched to tennis. This allowed me to distribute my energy as I saw fit."
Dealing with Crohn's
Doinja knows all too well that living with Crohn's disease as a young girl is far from pleasant. She tries to deal with it, but it remains difficult.
"When I feel fit, I often do too much, which means I'm tired again the next day. The pain that comes with Crohn's is also a major obstacle. Sometimes I just collapse and can't leave the house because of the pain. Then I have to cancel appointments at the last minute. That makes me unhappy.
To prevent these attacks as much as possible, I pay attention to my diet, among other things. I don't eat too much sugar, no pork, no wheat and no milk. I don't have a dietician, but I always look for alternatives myself. Because despite that, I still have symptoms very often. I do inject myself with Humira once every two weeks, which works very well. I have much more energy and my health is stable.
In short: I continue to work on it. But the harder I fight it at times, the more tired I get and the more stress and pain I experience. Nowadays, thanks in part to the medication, I manage to go days without thinking about it! I therefore try to go with the flow and think in terms of solutions instead of limitations. By sharing my story, I hope to motivate people to persevere."
Eradicate Crohn's disease?
"There is no cure for Crohn's disease yet. I think it is especially important that a lot of research is done into the cause of the disease so that better medication can be developed. Personally, I would love to run for Crohn's disease. A great challenge to raise money, but above all a great challenge for myself."
This is what the Dutch Digestive Health Fund does for IBD
Our mission is to help people with IBD get a better grip on their disease and thus improve their quality of life. We work together with healthcare providers and patients and conduct research into nutrition, fatigue and personalised care.
We are currently funding various studies for IBD:
- Nutritional advice for every IBD patient: People with IBD often have many questions about their diet. This study investigates whether patients with IBD can benefit from personalised nutritional advice via an app.
- The smart toilet seat: a toilet seat that can potentially predict intestinal inflammation and thus eliminate doubt, stress and worry for IBD patients.
- ENERGIZE IBD: a study into the effect of a personalised intensive sports programme on severe fatigue in patients with IBD.