When we went on vacation, it was the first time that I really did it publicly because usually I would just do it at home – like, I’d be close enough to home so I’d be able to go back and do it. It’s weird with all the people walking around you!
Dylan, age 16
That’s not a comfortable place
The nurse told me to do it three times a day on school days, in the morning when I wake up, right when I get home from school, and before bed. I didn’t want to do it at school because I just thought that that’s not a comfortable place to do it.
And she told me to do it four times on the weekend: again in the morning, right after lunch, before dinner, and right before I go to bed…. Once I did it when I spent the weekend at my grandma’s house. It was comfortable because it’s a place where I feel safe – like, it’s not really somewhere really public. But I would rather do it at home.
Gabriella, age 12
Usually I don’t feel comfortable
I always worried about where I was going to cath. I still do, because I don’t like just cathing anywhere, even in public bathrooms. At school I feel comfortable cathing in this little small bathroom, it’s the male teacher’s bathroom. I use that. And then at home. That’s why if I go somewhere I try to keep it short and then go home.
I could do it at somebody’s house but just not public places. In certain bathrooms, it’s open and there’s a lot of people in there, and usually I don’t feel comfortable.
Isaiah, age 17
Matthew, age 19
That was my big concern
Prior to the bladder rupture, I had been looking for a new job because I didn’t really like the one I was at. So when that happened I went on disability for a while – they did the original emergency surgery, but it wasn’t until a few months later that they did the Mitrofanoff. So during that period I was looking for another job, and I ended up starting a new job shortly after that.
The thing that I was worried about that worked out okay was that my office has a bunch of different bathrooms. They have three bathrooms on the floor that we work on, and they’re shared with other offices, and they’re pretty private. And that was really my biggest concern, was whether the bathrooms would be private or they would just be a stall, so your co-workers could kind of tell you’re doing something else in there. That was my big concern.
Johanna, age 22
My normal schedule
The first week they didn’t have me do it at school, so I only cathed three times a day, which was in the morning and then when I came home from school and then when I went to bed. But then my normal schedule became once in the morning, and then once at school before lunch, and then when I came home from school before I went to dance, and then when I came home from dance before I went to bed… On Saturdays I have dance from nine in the morning until four in the afternoon, so I had to leave dance* to go home and catheterize myself, then go back to dance. So that was a little bit of a hassle, but it didn’t really bother me socially or any other way, activity-wise it didn’t bother me, none of that.
Alexa, age 16
* Editor’s note: Alexa preferred not to cath in the bathrooms at her dance studio.
Picking times that were convenient for my schedule
Val: I would cath in the morning before I went to school. I wouldn’t do it at school, because I was like, “I am NOT doing it at school.” I told them!
Mom: Then you would do it when you got home from school around 3, 3:30ish, and before you went to bed at night.
Val: The nurses went through, they would pick times that were convenient for my schedule. I usually would just come home from school and take a nap anyways, so it went with my schedule fine.
Val, age 19
Siobhan, age 9
Absolutely fine with it
I have no problem going at a friend’s house. Usually their parents know about it, and they’re perfectly fine with it, and I feel absolutely fine with it.
If I’m just going down the street or next door or something, I don’t have to bring anything with me. If I’m going out or anything, usually I’ll have to bring a bag, or if I’m sleeping over, bring all my stuff over. It’s not a big deal – just pack a few supplies and I’m fine! … It really doesn’t affect me too much. I mean, it takes up a little bit of my time, just not a whole period of my day, and it’s not a problem or anything.
Usually I cath five times a day, or if I’m doing a sporting event, I’ll do it again before that. Or if I really just have to, like my bladder feels full and I just have to do it.
Sometimes it interrupts a schedule of doing something, but I just go. I don’t really rush it; I take my time, but still move fast.
Ethan, age 13
The only free time I can go
I get up around 5:45 am and I cath at 6:00, and I go again around 8:30 am, because that’s like the only free time I can go. Then I go again around lunchtime, like noon. Then I just always go when I have to go when I’m at home.
My parents wake me up right before bed to cath, but if I drink a lot that night (like if it’s really hot out) I’ll wake up in the middle of the night because I can feel that I have to go.
Kayla, age 14