Quads who cath - what does your overnight process look like?

[ejl10]

Hello everyone,

I'm a C5/6/7 and after about two years with an indwelling catheter I recently started self-cathing. I've got a few issues that I'm still working through, but ultimately I feel like I've figured out supplies and a process that work. That said, my overnight setup seems really tenuous and I feel like there's got to be a better way. I'd love to hear what others are doing to make it work! For reference, here's what I do:

I use a Coloplast Speedicath Compact Set, which seems like the only catheter that I've been able to figure out a way to use successfully due mostly to the built-in 800ml bag, as well as the tube's rigidity that I can control by grasping with tinodesis up near the bag. I put a bunch of these in a plastic tub, along with a bunch of antiseptic towelettes (gosh help me those things are a pain in the butt to manage without functioning hands, too!), and keep it next to my pillow in the bed where I can reach it easily at night.

The bed itself is an adjustable model, which lets me raise the head in the middle of the night when it's time to cath. I'd like to be able to just sit up in a flat bed and then brace myself against pillows or a wall, but unfortunately I have ossification in my pelvis that prevents me from having decent bed mobility. So the best idea I've got is the adjustable bed at the moment, as well as a light in the room that I can control through Alexa so I can see what I'm doing.

Over the course of the night, I generally cath about 700-800ml 3 times, and I whipped up a little container that I keep bedside on my wheelchair just barely within reach in which I can set the full bags upright into little PVC tube holders so that they don't fall over and pour back out through the tubes (see photo). I also leave an open space where I can dump the used towelettes and catheter housings. Then in the morning I bring it all into the bathroom where I can empty the bags into the toilet and throw everything in the garbage.

I feel like there are a few shortcomings with this setup. First, my wheelchair next to the bed is only just barely within reach, and I worry that sometimes I'm not going to be able to get the full bags into the little bucket without spilling on to my chair or floor. Second, I'm really quite dependent on the adjustable bed, which means I won't have a process if and when I travel anywhere else (family has me staying in a ski house for a couple of nights next week), and I'm pretty well relegated to permanently sleeping alone. Finally, it's just a super slow process with all of the steps involved and I feel like I'm not getting as much sleep as I'd like dealing with it three times a night.

I've got to imagine people have better ways of doing this! Please share.

Thanks in advance,
Emmett

[SCI-Nurse]

Too much output at night. Try not drinking 2-3 hours before sleep time. Cath right before you go to sleep-best guess. If drinking fluids doesn’t lower it to 2 times a night-could be -wgen lying down more blood circulation to your kidneys; fluid in legs/lower half once you get in bed abd legs up, the fluid from lower half circulates to kidneys ( so your legs swell at all? Best reason for wearing compression hose while up) and/or during the night you produce a hormone -antidiuretic hormone (ADH)-that causes decreased urine output. Re:trip- no caregiver going with you. You seem very independent but in new places that can change a whole lot. Bef-will one side be up against a wall or a wedge available but doubt Alexa will be in ski lodge . Or keep the indwelling in during trip or at night. Be sure and insert about 4 inches more after you get urine and then blow up balloon so as to not inflate it in the urethra. There is also 28 inch extension tubing you can attach to end of catheters/leg bag. Put several together and can make it 3ft. Long or longer. CWO

[ejl10]

Thanks for the response, CWO! Yeah, I'm well aware that my overnight output is off-kilter, and I have a meeting set up with my urologist next month to try to figure it out. Lots of tests in the works. Problem is I just don't produce all day long, and it all comes out at night. Hopefully long-term I can solve it.

As far as your travel suggestions, definitely something I'm thinking about. I definitely realize that this first trip with my new cathing routine will require a little bit of support, but I'm hopeful that I can uncover some tips and tricks others have learned to make it easier both at home and when I'm on the road. Prior to my injury I used to travel for work three to four days a week, and I'd love to get back to the point where I feel comfortable going away even just once a year!

[SCI-Nurse]

Also the extension tubing allows you to cath and drain it directly in to the toilet facing it or another container. I had a patient who was a truck driver and he refused to cath in one of the truck stops and didn’t like the bag idea. So he did it in the cab of his truck and out in an empty spoke juice bottle so he could just toss that. I told him Appme juice can look a lot like urine -so don’t drink it. CWO

[ejl10]

Haha, reminds me of the scene in Dumb and Dumber! I'm curious about the extension tubing as I hadn't heard about it before period that would certainly be preferable! I'm curious how confident I'll be using a catheter that isn't as stiff as this one without hand function, though. I'll talk to my OT and see what she can recommend. Thanks!

[SCI-Nurse]

Can you attach your catheter funnel end to a bedside drainage bag? Many people do this for cathing in bed. Attach it after opening the package end, but before removing the catheter from the packaging. Alternatively, rig up a regular urinal with a bedside drainage bag in the bottom (make hole with scissors, glue the tubing in with Goop! Plummer''s glue) and the cath into the urinal, hold it up to drain into the bag, and repeat with your next cath. If your urine amount is very large, you can use a 4 liter bag instead of the usual 2 liter one.

Talk to your urologist about whether or not you may have a syndrome of inappropriate ADH. This is known to be a problem with many people with SCI, especially with tetraplegia. Instead of your ADH levels being highest at 2AM as they should be (and lowest at about 2PM), it is switched. Blood tests may be needed to make this diagnosis.

(KLD)

[C5C6]

Complete C6 quad here. I put by myself a Foley catheter before going to bed, with a 1,500 ml bag attached to it, and sleep all night long. When I wake up I take out the Foley, empty and wash the bag, and do intermittent cath throughout the day.

[ejl10]

Complete C6 quad here. I put by myself a Foley catheter before going to bed, with a 1,500 ml bag attached to it, and sleep all night long. When I wake up I take out the Foley, empty and wash the bag, and do intermittent cath throughout the day.

This is awesome, sounds like the gold standard! If you don't mind my asking, how do you inflate and deflate the balloon on the catheter? I haven't actually tried it yet, but it seems like the syringe would be downright impossible without hand function.

I'm also curious which Foley catheter you use. I struggled with trying to insert any standard catheters, and ended up using the Speedicath Compact simply because it's rigid and therefore I can kind of aim and push it easily without hand function. Back to dredge up

Thanks!

[SCI-Nurse]

By syringe to the Y port of catheter-if ballon 5 mls. Then need At least 8-10 mls. Instilled. And to deflate-syringe to Y port and pull back until all fluid is out. The other way-which we use only if possible malfunction of balloon is to cut the y port near the base and the fluid will drain out. The “gold standard “ is intermittent cath day and night with no indwelling catheter. The thought being that the indwelling catheter contributes to more UTI’s because if the tract in to bladder that organisms can travel through or the balloon cause inflammation and is a foreign body. But each person is different and adaptations may be needed. CWO

[ejl10]

By syringe to the Y port of catheter-if ballon 5 mls. Then need At least 8-10 mls. Instilled. And to deflate-syringe to Y port and pull back until all fluid is out. The other way-which we use only if possible malfunction of balloon is to cut the y port near the base and the fluid will drain out. The “gold standard “ is intermittent cath day and night with no indwelling catheter. The thought being that the indwelling catheter contributes to more UTI’s because if the tract in to bladder that organisms can travel through or the balloon cause inflammation and is a foreign body. But each person is different and adaptations may be needed. CWO

Thanks, great instruction! My specific question was related to how to operate the syringe without hand function, but I appreciate your guidance on the real gold standard. I've been struggling with the overnight portion, and I'm hoping to save some sanity by using an indwelling solution at least temporarily until I can figure out what I'm doing wrong.

[SCI-Nurse]

A word of caution - please do not reuse the foley. It is not meant for multiple insertions. That being said, this could be an expensive endeavor.
ckf

[NorthQuad]

I use a 4000ml overnight bag and indwelling cath. The bag is often full by morning. I self cath throughout the day when I'm up. C5 complete-ish.

[C5C6]

This is awesome, sounds like the gold standard! If you don't mind my asking, how do you inflate and deflate the balloon on the catheter? I haven't actually tried it yet, but it seems like the syringe would be downright impossible without hand function.

I'm also curious which Foley catheter you use. I struggled with trying to insert any standard catheters, and ended up using the Speedicath Compact simply because it's rigid and therefore I can kind of aim and push it easily without hand function. Back to dredge up

Thanks!

I'm assuming you have no finger movement so you cannot just push or pull the piston of the syringe.

To inflate first you need to load the syringe; to do this, while putting the syringe underwater (use a small water cup) grab the piston with your teeth and push the tube outward with your lips to let water in. To unload the syringe, push the syringe into the catheter, then use one hand to keep the catheter pushed towards the syringe and use the other hand to push the piston towards the catheter.

To deflate just use another syringe with a hole punched into its tube, pull the piston past the tube hole, and push the syringe into the catheter; the balloon will automatically deflate and the water will fill the tube. You can't use the punched syringe to inflate, so you'll need two syringes.

I live in Argentina so I'm concerned you might not find the same foley I use. The brand I use is called "Well Lead". FYI, in my experience, Coloplast Foleys have a balloon extremely hard to inflate, while the ones I'm currently using are extremely easy to inflate.

[C5C6]

The “gold standard “ is intermittent cath day and night with no indwelling catheter. The thought being that the indwelling catheter contributes to more UTI’s because if the tract in to bladder that organisms can travel through or the balloon cause inflammation and is a foreign body. But each person is different and adaptations may be needed. CWO

I've heard many times about the risk of UTIs. What my urologist told me is that the UTI risk comes from a mechanism that occurs at the urethra, where the urethra reacts against the foley releasing a liquid to cover the foley, and this liquid is the one that gets infected. The thing is, this mechanism is activated after 12 hours of having the foley in, so if you use the foley for only a night time sleep (no more than 9 hours) this foley insertion does not activate that mechanism and the UTI risk is not higher than with any other intermittent cath.

I could be wrong about what I just said, because I have not read any paper nor research about this. What I can say with confidence is that, at least in my case, I have had no UTIs for the past 10 years, and I've used foleys every night ever since.