Marius is 11 years old and lives with his father and mother and five siblings in the Betuwe region in the Netherlands. Because of a toilet training issue, he has been retaining his stool for years, which has had consequences for his bowel. Now Marius has started irrigating and is gradually getting back on track.
It started with Marius having urinary problems. His bladder was too small and didn't respond when his brain signalled that he needed to pee. Because he had to retain his urine all the time, he also started retaining his stool, which eventually meant that he experienced leakage of urine during the day and liquid stool during the night.
After Marius had an ultrasound scan it became clear that there was too much stool in his intestines, and it couldn't be released properly. Last year, he took part in a group toilet training at the hospital for 10 days, but unfortunately, the training couldn’t resolve the matter, and the only option left was to start irrigating.
“I've been coming to the hospital for years now for my bladder issues. A urotherapist from the urology department helped me and she suggested irrigation. I was then sent to a special department where a stoma care nurse let me choose from three different irrigation systems. I immediately chose Peristeen, as it appealed the most to me.”
The nurse explained to Marius how Peristeen worked, but he still found the first irrigation scary, and kept putting it off for an hour.
“They played peaceful music to help me relax. My mother helped me during the first three or four months, but now I’ve been doing it by myself for a long time. I irrigate almost every evening. If I irrigate, things go well. But if I don't irrigate, because I forget or I’m occupied, then things don’t go so well, and I start having accidents again. There is a very clear difference between irrigating and not irrigating.”
For both Marius and his mother, Corina, Peristeen Support has been very important with the regular calls they make. Calls that Marius does prefer his mother to answer, however.
“Having that support is great. It's really about Marius, how he is doing. For a while, he really didn't like irrigating. After I told the Peristeen Support staff that, they came up with a solution in the form of a sticker system. Not as a reward, but as an incentive. It was a very good incentive for him, even though he was perhaps too old for the stickers. We really appreciated the compassion of the Support staff. Actually, the irrigation itself is not so bad, but you do need to do it every day,” says Corina.
Corina is happy to see that her son can get back to doing all the things that he enjoys now that he irrigates, like drawing and crafting or even sailing.
“It really helps us a lot. In the past, Marius was almost swimming in his bed. Everything smelled of pee, even the laundry, and I had to change his sheets constantly. When he irrigates with Peristeen, Marius finds it easier to catch the signals and he is practically always dry, both day and night. It's very simple: when he irrigates, there are no issues. It is the perfect solution,” explains Corina. And Marius agrees.
“I can do everything if I irrigate. Soon I'll be going to secondary school. I am still in my last year of primary school. We do things like sleepovers and camping trips, but those things are still difficult for me. I don't think I will be joining them, as I would need to irrigate there, and my classmates don't know a lot about it.”
The difficulty people have in talking about issues like Marius’ is something Corina finds challenging.
“Unfortunately, there is still a taboo with regards to toilet training. His classmates are largely familiar with his condition because Marius gave a brief presentation about it, but for example, if someone in the class has diabetes and needs an injection, it's easier to understand. So there is still room for improvement in that regard.”
As for Marius, now that he is back to living without worrying about leakage every day, he finally has time to look to the future. Asked about what he wants to be when he grows up, he is quiet for a moment – then:
“I think maybe an archaeologist!”
