‘I remain optimistic, but I am not always positive’

Ricardo de Koning has a stoma due to Crohn’s disease. He describes his medical history in a blog. ‘Social media always shows a beautiful life, but the misery remains hidden. I’ve decided to show that things don’t always go well for me. Not just gloomy stories, but realistic about what is going right and what is wrong.’

Text: Bert Bukman
Photos: Kimberley de Koning

‘Grinding in my head. I’m very good at that. Especially if you have a day like tomorrow ahead of you. I have to be at the hospital at 7am for surgery. Something I’ve been thinking about in my head for six months now. Getting a stoma. It’s really going to happen now! And I don’t feel like it at all!’
This is how Ricardo de Koning (1991) describes his last day without a stoma on his ‘crohnie blog’. In this blog he has been keeping track of his medical history for years and explains how he deals with it.
There is every reason for this, because the stoma had a long medical history. As a child, Ricardo suffered from persistent diarrhea and abdominal pain, which became increasingly severe until he was diagnosed with Crohn’s disease at the age of twelve. “I was in hospital for a week, it was terrible,” he says. ‘In two weeks I lost more than ten kilos, my intestines no longer absorbed anything. Eventually I was given tube feeding to calm my intestines. I was not allowed to eat normally for six weeks. I felt weak, slept all day and was exhausted. But fortunately I recovered in the long run.’

Other medications
Things only went well for a year, unfortunately, and then it started all over again. ‘The Crohn’s flared up, I kept getting different medication, but nothing helped. Slowly but surely the thought of a stoma came to my mind. The time had come four years ago. My doctor had alternative medications in mind, but I was done with them. I just lay on the couch dying of pain. ‘Give that boy a stoma,’ said a fellow doctor at the university hospital, and eventually my own doctor changed tack.’
Nevertheless, Ricardo was reluctant to have the stoma installed, as described in his blog. ‘Logical, because I knew people with a stoma, but luckily I dealt with it well, partly because I really chose it. But it was intense. Stool from your abdomen is a strange sensation and you also have to get the hang of caring for the stoma. What helped me stay positive was that I no longer had stomach aches from day one. I went into the hospital with pounding pain, and it was completely gone. No more stomach cramps, nothing, a relief.’

Starting a relationship
In the meantime, Ricardo had started a family. ‘My eldest was born in 2018, and that was not easy because my wife had a hernia from childbirth. She was only allowed to lie down while I was still dying. Home care was difficult but we had a lot of support from family. We lived with my in-laws for a few weeks. My grandmother also died, it was a year when everything happened at the same time.’
Starting a relationship when you are chronically ill is a different task. ‘I met Kimberley in 2012. The first thing I told her was my medical story. Fortunately, she could deal with it well, she was down-to-earth about it and actually regarded it as a side issue. That was very nice. Talking is the best thing you can do. Share experiences. Frequently asking: what is it like for you to have a friend who is chronically ill?’

Stoma too deep
The stoma made a significant improvement, but that was not the end of it. ‘I had to deal with complications: an abscess, a stoma that was too deep, and even a rupture. Fortunately, my Crohn’s was calm at that time, because with all those operations it is not without danger. Inflammation can come out, which can lead to open wounds on the skin. In the end I did have that for a while, but fortunately it was limited.’
Eighteen months ago, Ricardo again suffered from a severe Crohn’s infection that did not go away. ‘I am a technical draftsman at an architectural design firm where they handle my illness well, but I often had to call on the UWV last year.’
Unfortunately, his intestines still cannot be calmed down. ‘I started with TPV nutrition through the bloodstream. This is less stressful on the intestines than tube feeding. But I notice that it is becoming mentally difficult, it reminds me of the period before my stoma. I had a hard time at Christmas, when everyone was having a nice meal. I can eat, but it gives me a stomach ache.”

No hurrah stories
He is ambivalent about his condition, he summarizes. ‘I remain optimistic, but I am certainly not always positive. I don’t believe that’s possible in my situation. What helps is posting on social media, and not just hurray stories. Social media always shows a beautiful life, but the misery remains hidden. I’ve decided to show that things don’t always go well for me. Not just gloomy stories, but realistic about what is going right and what is wrong.’
Ricardo recently completed the Strong with Stoma resilience programme. ‘An online program that made a big impression on me,’ he wrote. ‘You delve deep into your life to see what you experience, but especially how you deal with disappointments. Some issues were confrontational. The module ‘Sense of Life’ in particular hit me hard. In this module you will discover how you approach life because you are ill. For example, I have been able to meet many people through my illness. I see that as something positive. The training makes me realize how grateful I can be for my life. That made me who I am. And I enjoy it more intensely.’

Take care of the children
Ricardo still has a lot of support from Kimberley. ‘She deals with it well, even though it really isn’t easy for her. She is almost always responsible for practical matters. During the summer holidays I had three weeks off, but I was sick for those three weeks. Kimberley has full custody of the children, which is quite tough. Talking a lot helps. And we get a lot of support from our parents and in-laws.’
Their boys Jamy and Toby are almost six and four years old. ‘Despite everything, there are times when I can really be a father. I take them to school every day, with the TPV power supply on my back. The children handle it well. They are curious about the IV line and understand that food passes through it. They know very well that I am not allowed to eat and they point this out to me. They sometimes call themselves the food police.’

Lifesaving
To include his sons in the story of his stoma, Ricardo wrote a children’s book. ‘I had previously written about my own life under the title The King’s Crohning. In recent months I came up with the story of Stomy, a stoma who wants to be a superhero with his ostomy bag as a cape. He always has to save someone and shows how a stoma can be life-saving.
‘My advice to people with a stoma: start looking. What has helped me is information on the internet, reading experience stories and seeing how others deal with it. If you are ill, look for good experiences from others. The mental aspect is important, which is sometimes forgotten in stoma care. It can help others to know that they are not alone. And I’m happy that I can contribute to that every now and then.’