Chonish intestinal inflammation: How a patient learned to live with it

I don’t tell my story because I like to talk about illnesses. But because far too little is known about chronic inflammatory bowel diseases, or CED for short. Many confuse with irritable bowel or consider them a taboo subject. More than 300,000 people in Germany currently live with Crohn’s disease or ulcerative colitis – and I am one of them.

I was 16 when my body suddenly got out of time – in the middle of the exchange year in the USA. Shortly after my arrival I got strong diarrhea. So violent that sometimes I didn’t make it to the toilet in time. I was in a new country, wanted to belong. But my body didn’t participate.

What made it even more difficult: In the USA you need a “Hallpass” to go to the toilet during class. When it started, I had to ask for permission – that was a race against time every time. To avoid this, I started to leave meals occasionally. It was incredibly exhausting. But I struggled through.

Back in Germany, my parents immediately went to the doctor with me. It quickly became clear: I had ulcerative colitis. My immune system incorrectly attacks the colon. The inflammation damage the tissue. I got cortisone and mesalazine high to stop the inflammation.

In the following years I displaced the disease, also because I hardly had any complaints. I didn’t want to be the guy with the sick intestine. I studied, traveled, celebrated – but always knew where the next toilet was and which food I better leave out. For twelve years I had no permanent medical care, only occasional reflections or cortisone.

After a commercial training, I studied business administration, today I work in the financial sector. There is a lot of responsibility on me, I work for many hours. I paid little attention to myself for a long time. When the stress in the job became too great, the disease returned. It quickly got worse: constant diarrhea, blood in the chair.

When I found a focus practice in Hamburg, it was like waking up. They took time, explained to me treatment options, including biologicals, modern drugs that specifically intervene in the immune system. Such an antibody soon became necessary for me. It prevents the inflammatory cells from penetrating the intestinal tissue. With that I felt better. I was able to travel, work, do sports and even ran a marathon.

But the disease was always there. My intestine had changed over the years, despite the medication, the fabric was attacked. After a reflection, the doctor said what had previously emerged: “If you were my brother, I would advise you to have the intestine removed.” That first threw me completely out of the track. A second opinion came to the same conclusion. In about 15 percent of comparable cases, malignant changes can already be found. Suddenly I was a risk patient and ran the risk of getting colon cancer.

It was difficult for me to understand. I was doing well in terms of health. So why have the intestine removed? I first had to understand that my feeling and the condition of my intestine were two different things. I discussed with my partner, informed myself, I asked me many questions. What if something goes wrong? What does that mean for my life, for my work?

In May 2022 I was ready: the entire large intestine was removed. The operation was not without complications, but it was successful. I felt in good hands all the time, because clinic and practice worked closely together. I lived with an artificial intestinal exit for almost a year. Today I only remember vaguely of this time. From the end of the small intestine I was shaped a so -called pouch, like a collecting container that now takes on the task of the large intestine. Yes, I go to the toilet eight to ten times a day because the pouch does not hold as much volume. But I can check the bowel movement. And the risk of cancer is banned.

Today I eat more consciously, avoid bloating and greasy. Cola or beer have their price. In the event of cases, I glue a bandage into my underpants. I have learned not to be ashamed, but to prepare well. And above all, today I speak openly about my illness. Because I notice: when I make myself visible, it will be easier.

Colitis runs in waves. Stress often triggered the relapses with me: a change of job, difficult phases of life, travel with too much program. So at some point it was clear to me that I not only need medical help, but also mental. I was in therapy, in men’s groups, I was intensively concerned with the disease. Because such a diagnosis never only affects the intestine – it also intervenes in self -image and disturbs trust in your own body. Maybe I’m not healthy today. But I know what is good for me. I’m looking for peace in nature, pay attention to breaks and an everyday life that suits me. Even if everything does not always work – I could do more sport – I have developed a much better awareness for myself and my body.

What do I want? That we talk more openly about such diseases. That it becomes clearer how deeply they intervene in life and how well you can still live with it. If you get the right help and start early to deal with it.

It took me a long time. But today I can say: I have not only regained my everyday life – I live a good life in which the disease has its place but no longer dominates my life.