Blonde long hair, chic clothes, a bright smile: If you look at the content of Kiki * on Instagram, you will discover a bright and happy young woman at first glance.
The timeline of the 24-year-old from Hamburg also shows a completely different side of her life: Kiki, who has flatulence and diarrhea and suffers from panic attacks. The young influencer suffers from irritable bowel syndrome.
This makes her one of nine to ten million people in Germany who suffer from chronic bowel disease. Women are twice as likely to be affected by the disease as men – it usually occurs between the ages of 20 and 30. The causes have not really been researched to this day.
The defining symptoms of irritable bowel syndrome include diarrhea, bloating and constipation. How do you live with chronic bowel disease that may require a toilet at any time? Influencer Kiki shared her story with us:
It all started when I was around 15 or 16 years old. At that time I did a year abroad in America. I was in a family where I didn’t really feel comfortable. Nevertheless, I didn’t dare to leave there because I thought the school and everything else was really cool.
At the time, I didn’t have the self-confidence that I have today, so I didn’t stand up for my needs. But the situation got worse and worse and at some point my irritable bowel probably developed as a result.
The first symptoms were abdominal cramps and I had to go to the toilet very quickly. Things have always upset my stomach, but that was on a different scale.
After the whole thing got worse and worse for four months, I changed my host family. Although I felt really comfortable with the new family, it only got worse. It felt like all the stress was falling off and it was just getting started.
You have to imagine that: I had never had anything health-related before and suddenly I had to run from doctor to doctor in the USA. That was very overwhelming for me. Luckily, my host mom always accompanied me and helped me a lot. I was completely turned upside down by the doctors once.
Before the first gastrointestinal examination, I had my first panic attack. That was a few minutes before the anesthetic and at first we thought I was allergic to a drug. The doctor then said to me:
You are a mouse right now and it feels to you like a giant cat is after you. At the time, I didn’t understand what he meant by that. But now I understand that he described the feeling of a panic attack to me.
I still didn’t get a diagnosis at the time. That’s why I traveled back to Germany earlier than planned and continued the doctors’ marathon here. It’s like this: Irritable bowel is a diagnosis of exclusion. This means that you first check everything completely and if all the tests are negative, then you can only diagnose irritable bowel syndrome.
But that’s also what makes it so difficult. Sometimes you get the stamp “irritable bowel” too early because the doctors don’t know what to do anymore. Sometimes another disease is behind the symptoms. That means I’m not 100% sure whether there’s another disease lying dormant in my gut.
Nevertheless, I was relieved when I was diagnosed with irritable bowel syndrome. After a year I finally knew what was wrong with me. But then I quickly realized that I couldn’t actually do anything with the diagnosis. This is not like celiac disease, where you can avoid certain foods and thereby relieve the symptoms.
You just have to live with it. That’s super difficult as a teenager, because of course you’re ashamed of the whole bowel story. That’s why I isolated myself at first and couldn’t do many things that you do at that age. That was pretty tough.
Before my year abroad, I was always on the road a lot. Then I came back and had completely changed. I was only at home and was afraid of everything, sometimes I stopped going to school because I was so ashamed.
I’ve also always lied and said I have migraines because I didn’t dare say I had bowel problems. When I think about it now, it just makes me sad. Because I know that shame is not necessary.
Up until two years ago, I still struggled with shame. But since I dared to talk about it on Instagram, that has changed. Then suddenly everyone knew. Many people around me now really understand why I sometimes act the way I do. For me, the public has totally helped me to accept the disease as a part of me.
The public and my sister-in-law. She’s a doctor, then took a closer look at the whole thing and recommended a few tests that hadn’t been done before. Including a test for the small intestine miscolonization Siebo. It’s not that widespread yet. Many in my community have written to me that not even their doctors knew about it.
The test was positive. I then took an antibiotic and changed my diet to the low-fodmap diet. This made my symptoms much better. I used to have problems with my intestines several times a day, now it’s only several times a week.
Despite this, it is still difficult to predict what ultimately irritates the gut. Sometimes I lie relaxed on the couch and don’t have anything planned and then all of a sudden it starts. But there are certain situations where I know that I should go to the toilet again first. In general, you can say that these are appointments in which other people are involved.
Within my Instagram community, I always call this “pooing out”. Exactly because that’s exactly what I do. It is very important to me to call things by their proper name, even though pooping and farting in public are often still taboo. Yet each of us does it every day.
I believe that making gut issues taboo is a matter of upbringing. When we farted or belched as children, we were quickly told that we shouldn’t do that. And it does something to you when you constantly have to apologize for something. But this is exactly where it is important to start. My goal is for us to have an open discourse on the subject. Children should learn that farting and pooping is normal.
Being open-minded is also my first tip for people with chronic illnesses. If you have diarrhea or bloating, or any other condition, communicate it openly. This is the only way to give your friends the opportunity to understand you. I always canceled at the beginning and made up excuses.
Of course, my friends noticed that and eventually asked for the real reason. I’ve also learned over time to accept my limitations. It took a while, but now it’s okay that I can’t go to festivals or to restaurants with friends.
I’m generally very lucky with my environment. Of course there were also people who couldn’t deal with my illness so well, it just didn’t work anymore. I just want the people I meet to really want to see me and not meet someone to go party.
So it should be about the people and not about the activity you do. It’s often the case that my friends adapt to my possibilities when we do something together. That’s something I had to get used to too.
In addition to all the limitations, I now know exactly what my irritable bowel has brought me positively. For example, I have become much more empathetic and perceive my environment much more intensively. But there are good days and bad days here too. On bad days I hate my gut and totally fight with myself. Healing is never a straight line, it always curves.
Sometimes I ask myself: Do I love myself? I would say it’s definitely a lot better than it was a few years ago. I think everyone has their insecurities. But I’ve learned to handle mine better. It doesn’t matter whether it’s my stomach folds or the fact that I often have diarrhea – it’s all human and just part of me.
*At the request of the protagonist, we only use her nickname
