Peter did not really realize a lot until maybe age four when he wanted to be dry, and then we made sure he was very open and understood everything with every doctor’s visit. We would prepare him before the appointments and after we would explain what the doctors said…The most stressful for Peter is that he is very active and social and not being dry would cause a smell and we would always be worried about it.
Mother of Peter, age 13
The bladder just wouldn’t cooperate
The bladder neck reconstruction went well. He was completely dry for probably about six weeks, and then he started slowly leaking again, and then he kept leaking…so at that point it was frustrating because he was cathing and still having to wear a pad in his underwear or a pull-up.
They just said they thought it was just the bladder was not compliant – so we didn’t really have a good explanation, it wasn’t like something went wrong or something anyone did, it was just, you know, the bladder just wouldn’t cooperate! We tried cathing more frequently, but it still leaked. At that time, at night to let him have some sleep, he would put the catheter in and tape it down, let it drain into a pull-up so he could get a decent night’s sleep. So we did that for about a year.
A bladder augmentation was the next step. They thought maybe if the bladder was under a little bit of pressure from the bladder neck, that it would stimulate it to grow, and it didn’t really.
Mother of Eric, age 8
Not really keen on going through that
I know the one thing we were having at some point during the process was we were on a lower dose of the Ditropan (Oxybutynin), so she was having wetness in the morning – like she would come down for breakfast and then she would have some voiding because her bladder was very full and she hadn’t urinated first thing upon waking up. And so we increased the dose and then she went back to being dry. But I know she was pretty unhappy with that, like all of sudden getting up to take her cereal bowl to the sink and there’s pee running down her leg. She’s not really keen on going through that, I guess.
Mother of Siobhan, age 9
Code word
The other thing that we have encountered, which was sort of in the surprise department, is sugar retains water, so you tend to get looser stools if you take in a bunch of sugar. So a couple times we have gone to the movies and she’s gotten a nice big piece of candy and lemonade, which of course is chock-full of sugar, and she’ll wind up having a bowel accident and we’ll have to bail out of that.
We have a code word for when she thinks she has a problem, and we carry extra clothes in the car and so on, but it is suboptimal…basically, if she doesn’t get caught at it, if no one notices, it doesn’t bother her. So far it’s always been adults in the family or something like that, so it has not turned into a big deal. But she is now concerned enough about things that she will voluntarily pass on the sugary treats and stuff like that, because she knows it can cause a problem.
Father of Siobhan, age 9
Mother of Ryan, age 11
I cannot wear fogeys to middle school
This past summer, we did an experiment and he stopped wearing the fogeys* because he was tired of it and he really didn’t need them anymore. He wasn’t really having accidents per se on a regular basis, and you know, he was concerned about coming to junior high and changing in the gym! And he just refused and said, “I cannot wear fogeys to middle school.” So he started wearing underwear over the summer and really, it’s not a huge problem. Some days we have to clean out his underwear, but generally speaking he can get through most days without a problem.
Mother of Henry, age 12
* Editor’s note: Fogey is this family’s code word for diapers.
He will still leak
When he does any type of physical activity, like track or anything that he has to do any running with, he does need to wear a pull-up because he will still leak. I tried to get him to use feminine pads and they were just uncomfortable for him. And I think it’s the mere fact that it was a feminine pad, not necessarily the function or the design of it – it’s just the mere fact that it was a feminine pad.
You think of things that would be more convenient for them, things that companies can develop and make…my thought was, if they made an insert that you can put in underwear, so that the back end and everything else is regular underwear material, and then have an insert in there that you can remove and wash…it would be more convenient and more of a self-confident thing for them, because, you know, their pants are lower, they bend over, you can see what’s there! And it wouldn’t be so bulky, because they don’t need padding in the back end, just the front. If it’s a girl, it would be in the bottom. It’s like an extra panty liner that’s sitting there but nothing that’s going to come off or stick to their skin or anything like that.
Mother of Ethan, age 13
When he wasn’t cathing
He did have a lot more accidents. I don’t recall him having more infections. He did have a couple, but they weren’t frequent like when he wasn’t diagnosed.
There was backflow into the kidney but it wasn’t showing to be causing any more damage, other than him starting to show a pattern of perhaps having some infections, that he was running the risk of damaging his kidney even more. Because his kidney in his X-rays, even when they first did the X-rays when he was seven days old, his right kidney had always been smaller than the left. So it was something that they monitored and it consistently stayed smaller than the other one – but that’s also the kidney that he had the reflux to.
Mother of Ethan, age 13
Mother of Ethan, age 13
Eventually the kids are going to catch on
He’s still very naive about it. For quite some time, up until about two years ago, he would wet through, and his jeans would be wet and he wouldn’t care. He wouldn’t notice! And you’d see him and be like, “How do you not know you’re wet? How could you be at your friend’s house and playing and the kids aren’t going to notice?” Or you could smell it. And it didn’t seem like it was a big deal for him, it didn’t faze him. So then you’d talk, you know, say, “Eventually the kids are going to catch on and kids can be very mean, and they can tease you for it. It’s important that you take care of this before it gets to that point.” And even now it doesn’t seem like it’s a big deal for him!
I’m pretty certain that there’s been curiosity with it. There may have been one or two times that the neighbor had commented, “You smell,” or something like that, and then he would come home and he wouldn’t just talk about it…He would just come home, go to the bathroom where he would change his clothes, and he wouldn’t really discuss it. And then I’d ask him, “What happened?” “Nothing…” And then like a day or two later he would tell me what happened.
Mother of Ethan, age 13
Bladder spasms
She still occasionally has problems. We figured out, when her uterus is spasming with her period, she tends to get some bladder spasms – and she’s had a couple days where that’s been really bad and she was wetting. She was like, “Ugh, this is so bad! I think I have to go, and I go, and there’s not much, then the next thing I know, I feel this spasm and I wet!” And she had no infection. I always check her for infection when she has that, and she hasn’t had an infection for a while. We finally figured out that if we give her Ibuprofen when she has her period, it cuts the uterine spasming, which stops irritating the bladder, and that seems to take care of it.
The spasms happened at school and she was so upset. That upsets her more than the cathing thing, when she feels like she has to go all the time…And constipation is a real issue. If she gets constipated, then she gets those bladder spasms too. So that’s been trial-and-error, figuring what helps that, what doesn’t help that.
Mother of Kayla, age 14
That becomes very stressful
It’s like a fact of life for her. I mean, she’s fourteen, she’s been cathing herself since she was seven, so she’s pretty much used to it. To tell you the truth, I think she thinks having her period is a bigger pain in the neck than having to cath herself! So she seems pretty fine about it all.
You know, the bowel thing bothers her sometimes. When it gets off schedule, when cathing doesn’t do it for her and she wets in between, then she gets extremely frustrated, because she feels like she’s doing all the things she’s supposed to be doing and it’s still a problem. So as long as she’s cathing herself and she’s dry, she’s really fine with it. It’s when she’s cathing herself and she’s still wetting and she doesn’t know why she’s wetting and why is this happening and she feels like she can’t go anywhere because she’s afraid she’s going to wet, then that becomes very stressful to her.
Mother of Kayla, age 14
That was a challenge
He had on a diaper, a onesie t-shirt, the body jacket, the leg braces…so it would be like, okay, depending on where we were – the bowling alley, the movie theatre – where’s the restroom? And that was a big thing too, because it was me, my husband wasn’t there. So when he was seven, eight, nine, we’d put the hood over him in the wheelchair and my daughter would go in to the women’s restroom and check it out to make sure it was empty – because with most bathrooms, the handicapped stall is way at the end and you had to get by the whole line to get in. One place that we found was really accommodating was Disney World: they had family bathrooms. It’s a really good invention.
If he were to have an accident, it would mean taking everything off. We could drop his drawers, drop the back of the brace down, take the body jacket off – but then if it was up his back, you had to take off the tee – it was just a hard thing to do, me by myself. It was hard to get in there! We’d try to do it without having to take everything off, but that was a challenge.
Mother of Alex, age 17