Diagnosed with Crohn’s disease at the age of seven

Marcel’s story of suffering began at the tender age of seven – with blood in his stool. The symptoms were promptly treated with cortisone, but the underlying cause remained. Crohn’s disease continued to destroy the boy’s body unhindered. Marcel recalls: “I often spent whole nights on the toilet in extreme agony and pain.” Other concomitant diseases made his life hell as well: inflammation of the esophagus and bile ducts, itching, yellow eyes, chronic bladder infections and abscesses on his skin due to having a weakened immune system. Additionally, the fear of colon cancer and liver diseases was a constant worry, as the risk is particularly high in Crohn’s patients.

At the age of 12, Marcel had his entire colon and half of his small intestine removed. ‟If I had been able to decide for myself at that time with my current level of knowledge, I probably would have opposed it.” Back then, the procedure brought many new problems: malnutrition, diarrhea, even more painful inflammation of the esophagus and anus – the disease shifted to the remaining areas.

First stoma at the age of twelve and severe bullying at school

Due to further complications, especially fistulas between the bowel and the bladder, Marcel was given his first stoma at the age of twelve. He was terribly ashamed of it and wanted to hide from everyone, especially from his classmates who started teasing him about it. Children are creative, and so the classmates thought up quite a few things. Holding him and pulling up his shirt was just one of the pranks. ‟I was bullied a lot, even beaten up, and had the nickname ‛Säcklischisser’, which literally means someone who shits in a bag. That left an indelible mark on me.”

Unfortunately, the material of the stoma bags back then was not as sophisticated. So, he suffered numerous embarrassing situations where the bag leaked. ‟I was desperate and cried a lot,” Marcel recounts. He withdrew completely and fought against keeping the stoma with all his might. ‟It got so bad that I lied to the doctors and claimed that my fistulas were suddenly gone and that the stoma could now be moved back.” As a result, the stoma was closed again. In retrospect, of course, that was idiotic, because it made the problems worse: The diarrhea became so extreme that Marcel even had to wear diapers – which caused his self-confidence to plummet. As a teenager, he was too scared to talk to anyone about any of this. Whenever he mentioned something, it was used against him and the bullying continued ...

Fate strikes twice – his mom becomes sick

Marcel’s most important caregiver and reference person at that time was his mother. When he had to stay in the children’s hospital for almost a year and got his first stoma, she was with him almost every day. But later, she started to change: Huntington’s disease took hold of her, gradually destroying her muscle function and making her aggressive and unpredictable. Since his parents lived separately, Marcel had to deal with the psychological stress alone until he moved in with his father at 17. Today, his mother lives in a nursing home, has been unable to speak, eat or drink for years, and is in a wheelchair. Marcel visits her whenever he can. ‟I want to give something back to her, because she was always my support person as a child.” The fact that this disease is 50 percent hereditary weighs heavily on Marcel and his brother. ‟I want to have a family someday, but I always have in the back of my mind that I could pass on this gene.”

Another stoma at 20 – from enemy to lifesaver

Marcel was usually sick and lacked energy. He often spent entire nights on the toilet. Then, at the age of 20, a new stoma was placed. This time, it worked. “The stoma made me feel much better – and that had a positive effect on my body, psyche and spirit. I quickly became stronger and more motivated.” Sure, it was a big adjustment at first, he remembers. Suddenly you’re wearing a bag on your belly which collects your feces! At the beginning, it can even be a bit messy, because you’re not used to handling it yet. But all that passes rather soon; however, despite these positive changes, certain doubts are harder to shake: What do others think? Am I still attractive? ‟As a teenager, I was too scared to talk about it, let alone get close to a girl. After all, a bag of shit isn’t very erotic.” Marcel had his first girlfriend when he was 24. It took him a long time to tell her about the stoma. ‟If it disgusts you, then I understand. But it’s not contagious, it doesn’t stink, and it’s not a restriction. Her reaction? Totally easy!”

Depression: In the wake of the black hole

But the dark clouds did not recede fully. The up was followed by a down and his unfailing optimism, which gives him energy, faded into depression. ‟I had no more energy; even taking a shower was exhausting.” Marcel self-isolated more and more and retreated to his safe space at home. Beyond treatment and at the end of his rope, he consumed cannabis to ease his pain. Instead of encountering understanding for his health situation, he was viewed with distrust, called a druggie and lost his driver’s license. ‟Many people labelled me a bad person! But without my driver’s license, I could no longer visit my mother and fell into a deep hole as a result.” Those around him did not realize how serious the situation was. Only the thought that his mother would not be able to stand losing him kept him from taking the final step. ‟Fortunately, I had the strength to get help myself.” The then 30-year-old turned to his support person in the hospital and told her about his suicidal thoughts. Red alert! Thanks to weekly sessions with a psychologist and medical treatment, Marcel was able to overcome his depression. ‟It’s definitely nothing to be ashamed of! I used to think that depression depended only on your attitude towards life or was a sign of self-pity, weakness, or laziness – but my own experience has proven me wrong.”

The most important thing is acceptance

‟If you hold on to the loss, it will break you. You have to try to accept the situation, both your disease and your stoma. Otherwise, the stoma will always be your enemy. It doesn’t heal properly or maybe you experience leakage because you don’t take care of it properly or you use an inappropriate stoma appliance. And you should accept help.” Fortunately, professionals and other persons affected can help – most importantly, the products today are also much better than they were 20 years ago. It has also helped Marcel to talk to others with stomas about dealing with the situation and about topics such as sexuality, partnership or travel.

‟I finally feel like a normal person! The stoma has given me back the freedom I have longed for all my life. I can go out with friends, to the movies, out to eat, travel ... and it’s easy to empty the bag while you are doing all this.” Sport also plays a big role in his life, he says: Fitness, floorball, hiking or swimming. Anything is possible with an ostomy, you just need to be a bit more careful – for example, use an abdominal belt. ‟I am comfortable living with my stoma and I want to keep it for good!” For some time now, Marcel has been working part-time. ‟Being in paid employment shows me that I have made further progress, and become stronger and more confident in the process.”

“Through my own experiences, I can help others.”

‟Since 2020, I have been the leader of a support group for stoma wearer (young ilco). This is one way that I can reduce other people’s fears, pass on my knowledge and inspire a zest for life in others, because everything is possible with a stoma.“

For about two years, Marcel has been posting regularly on his social media channels and talks openly about his condition and the topic of an artificial bowel outlet.” The response has been overwhelming! ‟I never thought that the reactions would be so positive and that there would be many people with the same problems.” Through this experience, things literally clicked into place. Marcel realized: The more open you are, the more understanding other people become. ‟Nobody likes to talk about their bodily excretions, yet it’s something quite natural.” At the same time, Marcel is concerned with breaking this taboo subject. ‟Again and again, followers ask me what this ‘thing’ is. My goal is to make healthy people aware of stomas and clarify what they are all about. I want to arouse the interest of those who do not yet know anything about stomas.”

His open-mindedness has also changed him. ‟I have always been a positive thinker, but now I’m much more confident. Helping others is worth so much more than a nice house and an expensive car, after all. My life’s journey has led me to my life’s work.”