Let’s Just Jump Right In: The Basics
I have talked to a few Interventional Radiology Hospital doctors (the guys that actually put the tubes in your kidneys) about the creation of this project.
When I explained that there was very little day-to-day guidance about Living with Nephrostomy, some looked at me like I was speaking another language. As if they were thinking “you now pee in a bag, what else do you need to know?”. I would smile and say “For example, Do you put your underwear on, over your tubes, or under your tubes?” I would watch their faces as they had an “aha” moment.
The truth is, there are pros and cons for each.
Underwear Over Your Tubes
- You can pull your underwear all the way down to your ankles, when sitting in the bathroom, (male preference), or off when changing clothes.
- You can pull your underwear all the way up above your belly button if you want, without the top of your underwear being stopped by your tubes
- The waistband of your underwear will press the tubes into your skin, gets bothersome, even painful fairly quickly.
- You can’t change bags easily, without having to take off your underwear.
Underwear Under Your Tubes
- No conflict with the waistband pushing the tubes into your skin.
- Tubes can slide around or be adjusted under your pants.
- Bags can be changed without removing your underwear.
- You can only take your underwear down to your knees when sitting on the potty, more problematic for men who typically sit with their knees apart.
- You can’t change underwear easily, without having to undo your tubes. This becomes moot, once you change to your overnight bags.
Whichever style is more comfortable for you, is the best way of doing things
These are based on our “Night bags being hung together” style, See our Videos Page This is when both bags are hung together with a carabiner, and don’t need to be strapped to your body (when you are not wearing leg bags)
Holders – (besides on your body)
Identify (or make) places you can “hang your overnight bags” whether in the bathroom on the toilet, at the sink, or in the shower, in the bedroom, by the bed, or dresser, or on your person when you are being casual around the house, or your home office, and don’t feel like wearing the leg bags (or you are giving your legs a break).
One arm of the toilet paper holder can work well, depending on size. A knob on a bathroom cabinet is another alternative. Also find a Holder in the bedroom preferably on a drawer or stand near your bed.
Things you need to have, and know day-to-day
- TV tray to take in the bathroom for changing day to night bags and vice versa.
- A place to keep “bags I’m reusing”, when not in use. A dresser drawer?
- Alcohol prep pads, a daily companion
In the Morning — Based on:
“Changing from Night bags to Day bags” from our Videos Page
1) Go to the drawer that your daytime “leg bags” are in, hang your “night bags” on your Holder
2) Take your leg bags out of the drawer, and slip them on, up to just below your knee
3) Tuck the tubes with the Red Cap between the elastic and the leg bag, so they don’t flop
4) Head to the bathroom with your TV tray
6) Place a towel on the floor at the place you will uncoil your tubes, floors are nasty!
7) Release the coil of tubes from the hanger, (you may need to remove them from the Holder)
8) Step over the tubes once to undo the “twist”
9) Clamp one tube shut, and undo the Luer Lock WITHOUT LOWERING THE TUBE
10) Raise the tube overhead to empty the entire tube into the collection bag
11) Once empty, take the tube from the leg bag on that side, holding both in the same hand
12) Adjust the tubes so the longer end is where the Red Cap will be transferred to
13) Unscrew the red cap, clean it with the alcohol prep pad, screw it on the longer end
14) Drape the long overnight bag tube, across the TV tray, out of the way
15) Take hold of the end of the leg tube with the male Luer lock, get the tube to lay right
16) Clean the end of the transition piece w/ the Alcohol pad, screw on the male end of the tube
17) Release the clamp
Repeat on the other side – Drain Bags into Toilet, Then coil up the tubes, and put them away
At Night — Based on:
“Changing from Day bags to Night bags” from our Videos Page
1) Take your night bags out of the drawer, and place them on the TV tray
2) Head to the bathroom with your TV tray
3) Hang your night bags on the Holder,
4) Drape the long overnight bag tubes, across the TV tray, out of the way
5) Open an Alcohol Prep pad, place it ready for use
6) Clamp one tube shut, and undo the Luer Lock, allow the tube to empty
7) Take one of the long night tubes and hold it in the same hand as the leg tube
8) Adjust the tubes so the longer end is where the Red Cap will be transferred to
9) Unscrew the red cap, clean it with the alcohol prep pad, screw it on the longer end
10) Tuck the tube with the Red Cap between the elastic and the leg bag that you are wearing
11) Take hold of the end of the night bag tube with the male Luer lock
12) Clean the end of the transition piece w/ the Alcohol pad, screw on the male end of the tube
13) Release the clamp
Repeat on the other side
14) Place foot on the edge of the toilet and drain the bag, remove the bag from leg onto TV tray
15) Repeat with other foot, place on a TV tray
Put them away
Have a friend apply the AquaGuard over your Dressing. Identify a holder in the shower to “hang your bags” (only if using night bags, not necessary with leg bags). Hospital instructions were to “front face” the shower, only allowing water to trickle over your shoulders and run down your back.
We Have Learned, This may be more important before your hole has matured (see The Stick). I have been experiencing a full normal shower, front back sides, all around, without the AquaGuard coming loose for over a year. Be careful about stretching, that does tend to pull it loose. But after your first month, be careful, don’t stress, it’s just soapy water.
When you are done, as you are drying off, just run your towel lightly over whatever bags and tubes you may have brought with you. If leg bags, once you take them off, the elastic will be dry by morning.
After a shower, is a good time to change the dressings. Before removing the AquaGuard covers, maybe your friend will wash your back with a washcloth and No-Rinse Body and Bath! It’s a nice reward for all the itching you can’t help but put up with.
Brushing your Teeth / Hair
Leg bags, not a worry. Night bags, just hang them on your known Holder.
Going to the Bathroom
With leg bags, you’ll figure it out on your own, based on your Underwear choice (See- over or under). If you are being casual around the house with night bags, just use your known hangers, Bathroom – Holder 1, or Holder 2, or my favorite, just leave the bags hanging on your Robe’s belt loop.
Weekly- See our video Changing the Dressings
There are several subtleties that take practice. The major thing is when removing the Dressing, pay special attention to always pull towards the hole, securing the tube with your finger, so the tube does not get pulled on. The Second Most Important thing – If you have sensitive skin, or you can get away WITHOUT using adhesive remover, do it. The adhesive remover can be an itch factor!
1) Remove the existing dressing and securement, pulling towards the center, OR work your way around the perimeter using adhesive remover. Either way, make sure you don’t pull on the tube.
2) Using the adhesive remover, remove “gunk”, e.g. leftover adhesive and stuck on dirt on the skin, and wet or dry ooze and crusty stuff on the tubes and around the hole. Do not scrub. No matter what the packet says, it’s irritating to the skin, be gentle. Alcohol pads take a lot more work, but you can do it.
3) Wash gently with water, pat dry.
4) Wipe the area down gently, from the center towards the outside with an Alcohol prep pad, let dry.
5) “Pop” your ChoraPrep wand, clean anything left on the tubes, the whole area, and the immediate area with back and forth motion (manufacturers instruction). The ChloraPrep actually puts down a barrier layer under the surface of the skin for protection.
6) The manufacturer says wait at least 3 MINUTES for it to dry, more if the person is hairy! WE HAVE FOUND, If the ChloraPrep is not completely dry when you close it up under a dressing, it itches like crazy. 3 Minutes is not enough, its still active under the skin. WE HAVE TESTED this and found 15 mins of drying time, reduces skin itch almost entirely
7) Apply Dressing of choice and securement.
Good time to trim your nails,
I hate scratching a hole through the dressing the first day,
by the second day, its much more comfortable.