Marcel

Marcel was seven when he was admitted to the hospital with blood in his stool and suspected appendicitis. Unfortunately, the suspicion was unfounded: Marcel's appendix was fine. Initially, no one knew what was wrong with him. For the boy, this meant four weeks in the hospital, alone in an eight-bed room. "I still remember my first time in the hospital. I felt so lonely, sad, and scared. And because it was just before Christmas, I didn't know if I would be able to celebrate Christmas Eve at home with my family." After numerous tests, it was discovered that Marcel suffered from Crohn's disease (see box) – a chronic inflammatory bowel disease. Because research into Crohn's disease was still in its infancy in the early 2000s, he was "...pumped full of cortisone. Back then, the drug was considered a 'cure-all.' I became as round as a ball and really bloated from the water retention," the slim young man recounts. At least: Cortisone keeps Crohn's disease somewhat under control for a few years.

Learning in the hospital

When Marcel was eleven, the illness struck again with full force. He had to spend three-quarters of a year at a time in the St. Gallen Children's Hospital – and even attended classes there. "Doing homework and studying undisturbed in the hospital is almost impossible. There were many distractions, for example, because someone from the nursing staff was constantly coming into the room." Despite his repeated, long hospital stays, he kept up with his schoolwork until secondary school and didn't have to repeat a grade.

Because the anti-inflammatory cortisone eventually stops working, he was quickly deemed "untreatable." Therefore, the doctors recommended surgical removal of his large intestine and half of his small intestine. "I wasn't asked back then. My mother had to decide, and she trusted the doctors. I don't blame anyone—they simply didn't know any better." Unfortunately, the operation only postponed his problem. Instead of his intestines, Marcel's stomach and esophagus became inflamed, and a fistula formed between his rectum and bladder. As a result, his urine and stool mixed, and Marcel suffered from constant bladder and kidney infections. "The surgeon told me the fistula could be surgically removed. But there was only a fifty-fifty chance of the operation succeeding. That wasn't enough for me. I could have become impotent or possibly needed a colostomy." Marcel's kidney and bladder problems persisted until he received an artificial bowel opening (stoma) at the age of 12.

One low point after another

From then on, Marcel had to carry his stoma bag with him at all times. He was ashamed of it – especially in front of girls. Some classmates also bullied him: "Back then, stoma bags were really bad compared to today. A few times the bag leaked at school, and it was a huge mess. I was teased and even hit," he recounts, surprisingly calmly. Marcel then lied to his doctors, telling them that the bladder fistula was no longer a problem – just so they could reverse his stoma. "I hated my illness and wanted to appear healthy. Of course, without the stoma, the problems with the fistula returned, along with the bladder and kidney infections." For several years afterward, he managed to cope by taking painkillers and antibiotics.

Despite numerous absences due to illness, Marcel successfully completed secondary school and began an apprenticeship as an electrician. However, he had to abandon this apprenticeship – partly because there were often no toilets on construction sites. He switched to a commercial apprenticeship, completed it successfully, and subsequently worked part-time at a municipal administration office.

At 22, however, his condition deteriorated so severely that he decided to have another stoma created. He sought extensive advice from a manufacturer and discovered that stoma technology had improved. With the new artificial opening in his bowel, the inflammation in his bladder and kidney finally disappeared.

Marcel “dries out”

Unfortunately, Crohn's disease is still present. Marcel suffers from severe bouts of diarrhea, during which he loses several liters of fluid. "I couldn't keep up with drinking enough. At first, I received IV fluids once a week in the hospital, later daily. Without them, I would have died of thirst. In addition, the constant dehydration left me constantly tired and dizzy," he recounts of that terrible time. At home, alone in his apartment, he often barely has the strength to get something to drink or cook.

Sudden improvement through cannabis

When Marcel, in his late twenties, experienced heart palpitations again – as a result of dehydration – and couldn't sleep, he tried a joint for the first time. He immediately noticed how good it made him feel: he could fall asleep, his gut calmed down, and his symptoms subsided. Marcel had already researched the positive effects of cannabis on Crohn's disease online. At first, he only smoked in the evenings before bed, then two or three joints a day: "But only when I had finished all my to-do lists and was sure I didn't have to drive anymore." Thanks to the anti-inflammatory effects of cannabis, Marcel's bowel movements slowed down: finally, his digestive system could better process the fluids and food he ingested. Marcel had much more energy. And he needed to take less medication.

Lots of trouble about the driver's license

This went well for several years until a traffic stop in 2016, during which the police officer requested a urine drug test. Marcel explained his medical history to the officer and "...that he couldn't urinate into a tube like a healthy person." The officer then took a buccal swab, which came back negative, and let him go. Unfortunately, the officer reported Marcel's medical history to the road traffic office, whereupon Marcel was forced to undergo a roadworthiness test – costing 1400 Swiss francs. Marcel openly told the traffic psychologistlogin medical history and explained that he used cannabis for self-medication. Naturally, the mandatory drug test came back positive. Marcel emphasized: "I'm a responsible person and would never intentionally endanger anyone. Driving after smoking a joint was unheard of for me. On the other hand, nobody cares, or rather, it's even legal, to drive while heavily medicated with painkillers like morphine. Which, out of necessity, happened to me quite often when I had to go to the hospital." The road traffic office revoked Marcel's driver's license. He defends himself with the help of a lawyer and a letter from his doctor – unfortunately without success.

A long period of immobility

For Marcel, driving a car represents a degree of freedom for several reasons: "The car offers me a safe space. If I need to use the restroom, I can simply pull over without any stress. I can quickly get to my many doctor's and hospital appointments by car. Furthermore, I can visit my seriously ill mother at any time in the nursing home 20 minutes away. Using public transport, I would have to change trains four times and it would take me well over an hour."

From now on, Marcel has to go for a urine test every month for a year, as well as for drug counseling. He recalls: "Because of the driving license revocation, I even had suicidal thoughts. I could hardly visit my mother anymore, I had anxiety attacks, and my health deteriorated again. I kept asking myself: Why am I being punished like this? I haven't done anything wrong." Marcel tells his trusted person at the hospital about his thoughts, and she reacts immediately. A psychologist is brought in, and Marcel receives emergency antidepressants. Marcel reduces his cannabis use and eventually stops completely. Unfortunately, with the reduced cannabis use, his health problems return.

A year later: He passes the driving test and the final drug test, which cost him another 1400 francs – partly because the traffic psychologist isn't an outspoken opponent of cannabis. Marcel is required to undergo monthly urine tests for another year and continue attending drug counseling. The latter proves unexpectedly beneficial for Marcel – he is received without prejudice, has good conversations, and feels understood. "Finally, someone told me I hadn't done anything wrong. And it confirmed that I have my life well under control – despite losing my driver's license."

To regain his mobility, Marcel discontinued his self-medication with cannabis. Thanks to numerous professional consultations, his partner, and a stable circle of friends, he is doing much better today. He has also learned to accept his illness, which makes things easier for him psychologically.

Since February 2021, he has been working part-time for the canton in an inclusion position and has a good chance of being offered a permanent position. He also wants to increase his working hours. Regarding cannabis, he has one wish: "I hope that the prejudice against people who use cannabis for therapy will soon end. That doctors and authorities will understand that there are people like me for whom only cannabis helps. And that this doesn't make us criminals."

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