I always say: ‘I have turned my pain into my strength’.

"My name is Naomi and I am 27 years old. I recently moved to Katwijk aan Zee with my partner, which is a lovely beach town. I worked in the media for a long time as a journalist and now I have my own business. Among other things, I make a podcast about irritable bowel syndrome (IBD) and I manage my own social media channels about IBD. I also organise events about holistic health, together with a friend. Besides my work, I like to dance. I even give dance lessons every week. Dancing is my big hobby. I also do fitness and I like to go to the beach."

What do you want to achieve with your company?

"I have IBD myself and it is my mission to make the world more friendly for people with IBD. I would like to help other IBD patients with tips and tricks and guidance with diagnosis and treatment. These are all things that I struggled with for 10 years. So I have ultimately turned my personal situation into my work. I always say: ‘I have turned my pain into my strength’. Every day I receive messages from people with IBD who have been helped by my story and tips."

So you have IBD yourself. Can you tell us something about your process?

"According to my mother, I have had intestinal complaints all my life. As a child, I already had many allergies and intolerances, for example to lactose. At a certain point, the allergies went away, but when I was 14^, I was diagnosed with IBD. At the time I had persistent stomach problems and severe constipation. I tried everything: extra fibre, enemas, but nothing helped. I also doubted the diagnosis for a long time. Because the doctor only asks you three questions to diagnose. I doubted whether there was more to it, also because I sometimes suffered from extreme fatigue."

What kind of symptoms did you have with your IBD?

"I had very extreme symptoms for 10 years. I tried every possible test and medication, but the doctors couldn't help me. When the doctor wanted to prescribe me antidepressants, I had had enough. That didn't suit me and I didn't want to take those medications. So I started my own research. I was trained as a journalist and wanted to know everything about the treatment of IBD. I tried and researched everything and that ultimately resulted in a report of almost 400 pages. Through this quest, I finally found out what works best for me."

How has IBD affected your life?

"I had severe flare-ups for a total of 10 years, from when I was 14 years old to 23 years old. The flare-ups usually occurred twice a week, and I would only just make it to the toilet. There were periods of extreme constipation (which is very painful) with severe diarrhoea in between. Sometimes the flare-ups were so severe that I could not function anymore. I would sit on the toilet, exhausted, sweating and crying, unable to stand up from the pain. Sometimes I was close to home, but I could not walk the last 300 metres, I was in so much pain. I hardly dared to leave the house anymore, I no longer went on day trips. I felt so lonely because the people around me did not understand me. I really had the idea that there was no one like me. Bowel movements and stomach aches are also private, you don't talk about them. I really wanted to get in touch with other people with IBD, and I wanted to break the taboo: to be the first to talk openly about it.

I can still remember a number of very unpleasant moments. For example, I once had dinner with friends at someone's house. I had been suffering from constipation for two weeks, but because of the food I suddenly had a huge flare-up and had to go to the toilet. But because of the constipation, I spent two hours on the toilet. The toilet even became blocked! I was so embarrassed. I didn't dare take the train home, so someone had to take me home. It hurt a lot and I was extremely embarrassed. Everyone was sitting comfortably in the living room and there I was, sitting in the toilet in pain. People even made jokes about my situation.

When I was 18 I once had a dance performance. Other people had organised lunch. Normally I look after my own lunch, but this time I had eaten with them. It was spicy fried rice and that had a very strong effect on my intestines. The return journey by train lasted 45 minutes and after just 5 minutes I felt the flare-up coming on. But there was no toilet on the train! I ran out of the train and looked for a toilet. I had already started to soil my pants. Fortunately, I found a toilet at a nearby restaurant, but even there I sat for hours. I had to vomit and poop at the same time, it was so intense and I was so ashamed again. It makes you so unhappy, and at the time I had hardly any help or knowledge."

How does IBD affect your life now?

"There was a turning point at a certain moment when I started to rigorously work on my health and intestinal health. I now know how to deal with my IBD, what I can and cannot eat and what the triggers are. As a result, I only have an attack 1 or 2 times a year. It does mean that I have to take it into account every day, and that I consciously choose healthy food that is good for my intestines.

Through my company, I can also help other people with IBD. I provide people with the tools, for example, how they can go to the doctor well prepared, or who else they can turn to."

Does IBD affect your self-image?

"I used to be insecure about my bloated belly. But now I see it as something beautiful. It's normal to have a slightly distended belly at the end of the day. Then I've taken good care of myself. I used to think: if I'm not slim, I'm not beautiful. But that bloated belly never made me feel beautiful or slim. That also takes a psychological toll. Trauma processing certainly helped me: hypnosis and EMDR, plus breath work. I think more attention could definitely be paid to mental health in IBD. That is also what I love about the community I have created. We support each other so that no one is alone."

Why is it important that donors give money for Dr John Penders' research?

"I think that the quality of life for people with IBD could be vastly improved if there was more knowledge. It would be good if the diagnosis process were simpler and if more information were available. Now you get the diagnosis and take some fibre samples home with you and that's it. It's really trivialised, but it can have a huge impact on your life. On everything: your work, your education and your social contacts. People don't really know how to deal with it and it would be great if there was more knowledge and guidance available."

What is your greatest wish for people with IBD?

"My greatest wish is that people with IBD feel good about themselves and can enjoy life without IBD getting in the way. I am convinced that it is possible. But you have to make an effort."