Welcome to Living Labels, where we look past preconceptions and listen to the human story behind the labels.
I think for many people it is still taboo to talk about poo and going to the toilet, but it doesn’t have to be.
In this collection of personal stories, interviewees talk about the stereotypes they encounter in everyday life. Others are quick to attach labels to them, but often forget that a person cannot be summarised in one word. This is the story of Anne Vijfhuize, Branch Manager at YoungCapital. Crohn’s disease, a chronic inflammatory bowel disease, affects many aspects of her life, but she does not let it stop her. Her response on how she labels herself, is ‘Crohn’.
What is it actually, Crohn’s disease?
Very simply, it means that you can get inflammations from your mouth to your butt. Usually those inflammations are in your intestinal system, especially at the border of the colon to the small intestine. This is because your immune system attacks your own body, so it is treated as an autoimmune disease. Crohn’s cannot be cured yet, but it can be treated. In any case, I take medication for it every day. I take them in the evening after dinner. In addition, I am given medicines by infusion in the hospital once every eight weeks. That usually happens in the evening after work, because I find it more relaxing. I don’t like doing it during my working day.
When did you find out you had it?
After an examination at the Amsterdam UMC, around the age of 23. Before that, I had been operated on several times for abscesses in my intestine, but the doctors didn’t know what caused them. And neither did I. Ever since I was a little girl, my stomach has been upset, but never in such a way that I thought there was something wrong with my intestines. And when I got older and went to university, I didn’t lead the healthiest lifestyle. So I thought my stomach problems were related to that. Then at some point I started to get an oppressive pain around my bowels and behind. It was so bad that I could no longer stand, sit or lie down. And my skin was very tense. That turned out to be due to the abscesses, which had filled with pus. My GP brought me to the regional hospital, where I underwent surgery several times. The doctors then drained the abscesses, but they kept coming back.
I didn’t want to burden my housemates with someone who was sitting at home sick and unable to do anything.
Then I asked for a second opinion at the Amsterdam UMC, and it turned out that I had Crohn’s disease. That process took about a year, during which my life came to a standstill. My studies in communication and information sciences were put on the back burner and during that time I went to live with my parents in Huizen, the Netherlands, because it was more practical. Before that, I lived in rooms in Amsterdam, but I didn’t want to burden my housemates with someone who was sick at home and unable to do anything.
The doctors later also discovered that I had a lot of scar tissue and several fistulas in my intestines. The latter simply means that there are small tunnels in my intestinal wall that will not grow back together. Then when you go to the toilet and stool passes through your intestines, those tunnels can get infected and cause more abscesses. I often have to be operated on these days. In the last four years, it happened every summer. Not yet, and I hope it will stay that way.
What it means for me on a daily basis is that I can never just go to the toilet. When I have defecated, I have to rinse immediately to keep it as clean as possible. I just do that with a showerhead. That means that I only poop at home, or with very close friends. I don’t do it at work. I don’t know if I would do it if there was a shower next to every toilet. We do have a gym here with a shower that I could use, but it doesn’t feel comfortable.
Actually, it would be chill if there were bidets everywhere in the Netherlands, like in other countries. Now I constantly have to find out if there is a clean toilet when I go somewhere, for example. Is there a chance I will have to go to the toilet? And can I rinse there? I also think about this when I go on holiday. Then I have to take my medicines with me in any case, and sometimes antibiotics too if there is a sudden infection. I also find out which foreign hospitals I can go to if something goes wrong. And I can’t get all the vaccinations, so I run extra risks in distant countries.
Crohn’s disease also makes me tired more easily. My resistance is less good, I often have an iron deficiency and I catch a cold very quickly. And once I am tired, it is difficult to build up energy again. So I have to take more frequent breaks than before.
It feels like I can’t trust my body as much as I used to.
It feels like I can’t trust my body as much as I used to. I find that difficult. For the first seven years after the diagnosis, I did quite well, after my medication was adjusted properly. But since then I have been in hospital every year. And once I had to have three operations in one month. It all happened very suddenly for me. Now, as soon as I feel anything, I think ‘shit, it’s not going to go that way again, is it?
So I am very preoccupied with it in my head and I take all sorts of things into account. When I first knew I had Crohn’s disease, I did a lot less of that. I just pretended it wasn’t there. I did tell my parents and brothers, and my friends too. But it was not something I wanted to talk about. I was in the middle of my student years at the time. I wanted to spend it like any other student. I kept on going as if nothing was wrong, but at a certain point my body couldn’t take it any more.
Now I’m very open about it. Because usually people just don’t know what Crohn’s disease is. They are interested in what it entails and how it works. And that’s what I tell them honestly. Anyone can always ask me anything about it. Then I know you are interested. But there are also people who don’t do that. Or they say they know someone who has it and don’t ask. And they say that it will be all right. But it just isn’t. This will be the case my whole life. And the clinical picture is not the same for everyone.
What does that look like for you?
Well, by chance I had a check-up with the gastroenterologist the other day. He told me that there’s not much more they can do for me in terms of medication. The current dose is pretty much the maximum. The Crohn’s is basically under control, but not the fistula. And then you end up in the experimental research with medicines. You can imagine how much I hated hearing that. Because how am I supposed to make that decision? It’s not at all certain that the treatments will work. And they are intense processes that last at least six months, during which you have to undergo multiple examinations and operations. And if that medicine still doesn’t work, then you’re basically back to square one. And there may be no other treatment available. Then there’s a good chance you’ll end up with a stoma, and I had hoped not to have to think about that for the next few years. When I first heard that it was a possibility, I almost cried.
atst een controle bij de maag-darm-leverarts. Die vertelde me dat ze qua medicijnen niet veel meer kunnen doen voor me. De huidige dosering is zo’n beetje het maximale. De Crohn is daardoor in principe onder controle, maar de fistels niet. En dan kom je in de experimentele onderzoeken terecht met medicijnen. Je kunt je wel voorstellen dat ik het niet fijn vond om dat te horen. Want hoe moet ik die beslissing nemen? Het is helemaal niet zeker of die behandelingen gaan werken. En het zijn heftige trajecten van minimaal een half jaar waarbij je vaker onderzocht en geopereerd wordt. En als dat medicijn dan nog niet werkt, dan ben je weer eigenlijk terug bij af. En is er misschien geen andere behandeling meer mogelijk. Dan is de kans ook groot dat je uitkomt bij een stoma, en ik had gehoopt daar nog niet over na te hoeven denken in de komende jaren. Toen ik voor het eerst hoorde dat het een mogelijkheid was, moest ik bijna huilen.
But I have decided that I will not let my illness become an obstacle.
But I have decided that I will not let my illness become an obstacle. I went to Lowlands this year, for example. Not exactly ideal in terms of toilet and shower facilities, as you might understand. In terms of food and drink it was not very healthy and I slept little. Someone without Crohn’s disease would also notice the effect this has on your body, but in my case it was perhaps many times worse. I often still notice the effects one or two weeks later. But I was really looking forward to it, so I didn’t let it stop me. I just had to prepare myself a bit better than others did. For example, I had brought some of those Zwitsal wipes. If there was no possibility of rinsing on site, I could always use them. It is what it is. I just don’t want Crohn’s Disease to stop me from doing these kinds of fun things.
That attitude sometimes works against me. In 2019, for example, I went on holiday to Vietnam. I don’t know if I would do that again. The food there was very bad. I have to watch what I eat. I started eating a lot less meat, for example, because I noticed that my intestines reacted to it. And very acidic things like oranges, raspberries and blueberries can make me run to the toilet, so to speak. So if there is a nice dessert with fruit somewhere, I have to think about it. But then I sometimes eat it anyway. Maybe I overstep my boundaries too often. But that’s fine, that’s who I am.
I remember once being out of work for a month because of my illness, a period during which I was under anaesthetic two or three times for operations. I hated not being able to work for so long, so when I could go back to work, I wanted to do it full-time immediately. But after the first day I was completely worn out. My supervisor and my team slowed me down. They said it was important that I had the energy to be active after work, to be able to cook for myself or go out for dinner. I liked that reaction and it made me feel less guilty that I didn’t go flat out straight away.
I think for many people it is still taboo to talk about poo and going to the toilet, but it doesn’t have to be.
They also take good account of me. For example, the colleagues who know I have Crohn’s often ask me during busy periods whether I am still doing well. And if I have problems with my stomach or intestines because of the stress, I mention that too. It’s great that YoungCapital gives me the space and freedom to talk about it. That is not the case everywhere. I think for many people it is still taboo to talk about poo and going to the toilet, but it doesn’t have to be. You do it every day, everyone does it every day. So why is it a dirty subject? It’s just something very human, something very natural. And in my life, fat is central.
That’s why I think it’s very important that the colleagues I supervise can also be open with me. This makes them feel more at home in the office. Within our team, we therefore have a good match, despite our different backgrounds and personalities. Sometimes we think differently about certain subjects, but we can talk about it well. I have not experienced anything different within YoungCapital. After graduating, I immediately started working here and I never had the feeling that I was ‘different’ or treated differently.
I don’t want people to look at me differently because I have Crohn’s disease. That they see me as a patient. Of course I am, but I don’t want to be treated like one. That is precisely why I would like to show what you can still do despite your illness.
And I think that is very important. I don’t want people to look at me differently because I have Crohn’s disease. That they see me as a patient. Of course I am, but I don’t want to be treated like one. That is precisely why I would like to show what you can still do despite your illness. Because sometimes I get discouraged when I read stories of others who live with Crohn’s and what they can no longer do because of their illness. For example, they can no longer work, do fun activities or go on trips. But those are things that are important for me to be able to do, things that make me happy. I don’t read those kinds of stories any more, that are so focused on what you can’t do anymore when you have an intestinal disease. I just don’t know if that’s the right strategy.
What does the future look like for you?
I find that such a difficult question. So much can happen in a period of five or ten years. I can think about that, but I prefer to live in the moment. In the short term, I think it would be cool to take a course in theatre sports one day. That is a bit like The Lama’s or The Great Improvisation Show. Or a short course in stand-up comedy, in which they prepare you to perform a ten-minute show. It seems to be good for your self-confidence, but it is of course very vulnerable. For what if nobody laughs? I also want to see a lot more of the world. Preferably with someone by my side.
No, since my diagnosis I have not had a serious relationship. I have dated, and if that goes on a bit longer I will of course tell people that I have Crohn’s disease. But it’s not something I talk about on a first date, only when it comes up in passing. Before I go any deeper into it, I have to know who I am dealing with. I do hope that the older I get, the more I will meet people who can respond respectfully and maturely. I am sometimes afraid that if I tell them, they will suddenly not like it any more.
It is very important that we keep talking about it.
But the best thing would of course be if in the future a treatment for Crohn’s disease could be found that achieves good results. Or at least one that stabilises the disease. And, of course, that more people dare to talk about it. It is very important that we keep talking about it.