Have you considered using a catheter for peeing?

[susana-m]

Pee math is a nightmare. Unfortunately, the doctors never explained why it was a bad idea to dehydrate. I’d ask if they were gonna come to my house to help me go to the bathroom in the middle of the day and that would end the conversation. Might’ve been helpful if they had explained the long-term damage to my bladder.

Then again, I didn’t have many options at the time

I was never able to use regular catheters, way too painful. One doctor suggested a suprapubic catheter which would require minor surgery and threading a catheter in a hole to my bladder directly every 2 to 3 months. That had its own risks of infection.

Been using the PureWick for almost a year and a half now. It has changed everything. When I’m in bed, I don’t have to wake anyone up to go to the restroom. (super bonus for my family to get uninterrupted sleep) When I go out, I don’t have a countdown deciding how long I can be out. We got an extra big backpack and, despite it not being designed for this, I wear it all day long. The amount of UTIs dropped immediately.

The problem, as with many things, is cost. It’s expensive. And insurance refuses to pay for it despite the fact that urologist and SMA doctor both prescribed it. I’m still trying to prove to them that the equipment costs less than constant UTIs, ER visits and antibiotics.

To answer your question: it made a huge difference in my life.

Maybe we should try some collective bargaining with the insurance companies. Get people with chronic disabilities together to lobby for specific things. Several thousand people have more leverage than two.

[Lisanne]

I’ve used the Purewick in the hospital after surgery to my leg which made getting out of bed very difficult. I like it better than calling a nurse to help me use a bedpan but sometimes it leaked. I can’t imagine using it out in public. I use a scooter outside and transfer in and of it to get in the car. I don’t see how I could use it while wearing pants and getting up and down and in and out. It was great for being in the hospital bed though. I’m still doing the pee math when I go out unless I know that I’m going somewhere that has a seperate family bathroom that my husband can help me get off the low toilets.

[alyssa-silva]

@Lisanne That’s a great point. I get transferred a lot, too, so that could be difficult when I’m out and about. I wonder if you could attach it to a bag instead of a canister. That way, you could tuck it into your clothes.

@susana-m Do you know if that’s possible? I’m so glad it works for you! You make me want to try it at home. My NJ feeds make me have to pee all the time. It’s very inconvenient.

[susana-m]

@Lisanne Like Alyssa said, it’s all about the placement. The position that works best in bed is a little farther back than the position when sitting. I also don’t transfer to get in and out of a car and generally don’t wear pants.

One option could be leave the banana already placed and then hook up the canister when you need to pee. But that would require taking the big canister with you which is awkward and bulky. At the end of the day you gotta figure out what works best for you. Super pubic catheter might be the way to go for you.

@alyssa-silva I’ve no idea if it’s possible, I do know that insurance companies fight tooth & nail to avoid paying for anything. But it’s worth trying.

[Lisanne]

Yes it’s so true about placement. I use a walker in the house so I couldn’t use it during the day but I have thought about using it at night so I don’t have to bother my hubby. I feel bad to wake him on those occasions that I need to pee more than once or twice a night. I’d really like to use it on the plane but not sure with the transferring from scooter to aisle chair then to plane seat and the reverse after landing. I never thought my life would revolve around peeing so much.