If the pain is bad enough that you want to fix it, the catheterization isn’t that bad. It just becomes part of your normal life, and people that are close enough, people who understand what you’ve been through, just accept it. I had one boy who was in one of Robert’s schools who ended up having surgery and had an ileostomy, and he came up to me and said, “I just want you to know that your son’s not the only one. I had one too and it’s okay.” He was a couple years older too, he was a high school student, and I was just really surprised that he wanted to tell me that. So there are people out there that have the same thing. There are different groups that you can talk to…people out there if you want to talk about it. And it’s okay. It depends on how much discomfort you had, and if you can make all the symptoms go away then it’s really worth it.
Mother of Robert, age 16
The biggest thing is his comfort
Advantages are: definitely he doesn’t have the discomfort, and he’s dry at night, which I think is so much nicer for him – because we just hook up a catheter to a bag. Like I said, with the saline he just has so much volume going through. He’s just really comfortable; the biggest thing is his comfort.
Disadvantages are: if he does it too quickly and doesn’t wash his hands, he gets a urinary tract infection. I mean, he has his equipment, and for him to just take something and go into the bathroom, it’s not a big deal, because he’s used to doing that with his ostomy anyway. I think for a typical child without other issues, it’s just getting into the habit of having to carry an extra bag or having it in the nurse’s office or somewhere when you need to use your catheter.
Mother of Robert, age 16
The cath has been a savior
She’s delayed in reading and they were always asking me, “Is her health affecting her?” And yeah, when she was sicker she was doing worse. She’s in grade level now, but she was below grade level all this time, this past three or four years when she was sick – it’s really affecting her. Last year she missed a month, and not only because she missed, she is little bit delayed. There’s always this question of doing a neuropsychological evaluation. She was having a lot of side effects of a lot of medications, so the cath has been like a savior for her. She was very sick from a lot of medications, very sick, and getting very resistant infections, more and more. So the cath was a hard idea, but on the other hand she got healthier with it. From being on a list like this of medications to now she’s taking none.
Mother of Naomi, age 10
I think she likes the results
Advantages: the Ditropan (Oxybutynin) keeps her dry in between, so you don’t have to worry about being out someplace and, “Oh, I didn’t make it in time,” or, “I didn’t feel that I needed to use the bathroom because I was busy with my activities.” So socially it’s really huge, because it allows her to be more like her peers in that way.
Disadvantages: when the kids are little, you’re always looking out for, “Where can I find a clean bathroom?” There were a couple of occasions where we’d be off on the side of the road, and cathing just onto the ground in the woods, because she said, “Oh, my bladder hurts, my tummy hurts,” and that was the only place we could find.
And it’s more of a big deal. It was definitely a learning curve, so she was less independent during that age of young school, before she learned how to do it, than most of her peers were. And because she’s sort of a perfectionist and it was a skill you had to master over time, it was a little frustrating for her to learn it. But now that we have gotten to the other side, it feels much better…I think she likes the results.
Mother of Siobhan, age 9
Mother of Ethan, age 13
We can do this
There’s lots of people dealing with a lot worse. And that’s one of the things that Children’s really teaches you, because you see so many kids that are so much more involved, kids that have huge mental issues, that have huge physical issues, and I was like, “This all we have to do? This is a piece of cake, we can do this.”
And then once we started doing it and she stopped having bladder infections, I was like,
“Oh, this is so much better!” She’s not on these antibiotics all the time, she doesn’t have fevers, she doesn’t have bladder infections, her urine is nice and clear…
Some people are a little horrified when you tell them, and I say, “Oh, it’s no big deal!” She goes to the bathroom, puts a catheter in, drains her bladder, throws it all away in a paper bag, and she’s good to go! She usually wears a pad just in case she has a spasm or something, like a little Kotex pad, but she doesn’t wear diapers or anything.
Mother of Kayla, age 14