I have to drink a lot of water, which I don’t like that much. It sometimes feels like my belly’s too full. But I have to drink lots of water to wash it out.
Naomi, age 10
It should be something we can fix
I haven’t had any infections. I have had a leaking issue that I’m still kind of trying to work out. And I’ve been assured that it should be something that we can fix pretty easily. Right now I’m on a medication for it, which isn’t really helping a whole lot, so the next time I meet with my doctor, there was some other stuff that he thought we could try if that didn’t work. I think he mentioned injecting something that would help.
Johanna, age 22
Because basically, from what I understand about a spasm, it’s like your body is trying to reject something. For instance, if you have a bladder infection, it’s inflamed, so it’s trying to fix itself. I never found that taking Tylenol or anything like that helped all too much. I know that there’s anti-spasmodic drugs: I’ve tried those, those didn’t help too much.
Sam, age 32
There was times that I was having some accidents and stuff like that, in fifth grade, fourth grade, which is an uncomfortable time to have things like that happen. And I was kind of a MacGyverish type kid: I would disappear, I’d drop a cup of water on me, I’d find ways to make myself look like it was a natural accident… I still get bladder spasms, which are tough to deal with. If I think hard enough, I probably can find little ways that I’ve helped them: taking baths, putting ice on my stomach…
Keeping the bacteria at bay
My doctor figured out a way of giving me an antibiotic through the catheter. His whole theory is, if we put an antibiotic in, I won’t become resistant to it. It’ll just be in the bladder overnight, then it’ll come out. And that should keep the bacteria a little bit at bay, so I don’t have quite as many urinary tract infections. He explained that to me, and I’m like, “I’m completely on board.” So I get a box of these syringes, I throw them in the freezer. My freezer has meat, ice cream, and syringes. Then the syringes, I defrost them in a couple of hours before I go to bed, put it in before I wake up. Every Wednesday I do that. It seems to be working… It’s a responsibility. When a quote unquote ‘normal’ person goes to the bathroom I don’t think they’re thinking, “I got to get everything out.” I don’t think it evens crosses their mind. For us, because of bacteria and because of stones and UTIs, it’s a responsibility. You really should try to get everything out. You should drink a lot of water. That is so important, and that’s probably the most difficult thing. I find that more difficult than cathing: it’s not a common thing, reminding yourself to drink. You drink when you’re thirsty! I drink when I’m thirsty, but if you ask any doctor in Urology, they’re telling you drink 60, 80, 100 ounces of water. To have that goal, it’s almost like you’re drinking to drink, not drinking because you’re thirsty, so it’s a different mind frame.
Sam, age 32