Questions about living with nephrostomy bags

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Posts: 10
Joined: 2014-06-18 17:43:03

Questions about living with nephrostomy bags

Post by azbaywatch »

Hi everyone, it has been many years since I’ve asked for help on here, as living with a colostomy had leveled out for me. This post might be a little long to explain the background. I had surgery in July of 2021 to remove radiated tissue, abscesses, rectum, etc. I’m still living with an open incision from not healing and they now found squamous cell carcinoma, Stage III. The doctors now feel that I never healed and kept getting abscesses because of the cancer. Biopsies done from the surgery in July did not show any cancer. I have gone through wound vacs, packing, home health nursing, etc and after landing in the hospital in April, they found cancer. The mass is pressing on my bladder and has blocked one of my kidneys so they put in nephrostomy bags in both kidneys along with a Foley catheter while I go through chemo and radiation. They were going to do a Grasilis muscle flap surgery to try to get the incision from last July to heal, but that is off the schedule until we see if the chemo and radiation work. Possible surgery to remove the mass as well once it shrinks.
For right now, we have been trying to figure out how to deal with covering up the urine bags. My wife sewed pockets to the sides of my shorts to slip the nephrostomy bags into when we are going to doctor appointments. The tubes are really long and just sort of roll up and stick out. Does that stop them from draining well? We pin the bags to the bottom of my shirt when in the house. I’m pretty much restricted to my recliner for the last 10 months because of the incision drainage. Would it work better to put the bags to my thighs instead? When I leave the hospital I have the big bag for the Foley catheter and when the urologist changes the Foley catheter they use a leg bag size, so I’ve been back and forth on trying to hide bags when out in public.
We’ve looked on Amazon for covers for the large catheter bags and tubes and the reviews aren’t great. I’ve been using a walker the last couple of months so have just put the bag into a fabric shopping bag and tied it to the walked. Any options or ideas? This may be temporary or I may end up with permanent and I haven’t researched yet what that would entail as far as one bag or three bags. One step at a time I guess.
Forgive me for rambling. In the hospital again with blocked nephrostomy tubes and waiting for them to be changed out. Any help would be appreciated.
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