Hi, has anyone had to have a nephrostomy or know anyone who has? Any advice in maintaining and managing the bag?
My wife had one on Friday. Not quite a straightforward as the oncologist and nurse said it would be.
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Hi, Ive not had one, but known people who have. Overnight usually it needs attaching to an extension bag so it doesnt overfill. During the daytime, regular emptying. Beyond that, not sure what aspect you are asking about without more detail. Is your wife at home with you?
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Things like how they shower with them, how do they carry them around.
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Hi, my Dad had 2 bags due to kidney failure.
It was the only way his kidneys could drain. They were quite awkward when moving as he had to carry them. I think you can get bags to put them in.
They had to be drained throughout the day and, as somebody else mentioned, attached to a bigger bag overnight. A nurse came in every week to change the bags and dressings. Be careful they dont get pulled as they can come out. My dad ended up having to get them put back in again after falling.
Is you wifes bag temporary? My dads was permanent due to widespread cancer.
Best wishes x
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The oncologist initially said temporary, but there’s a chance it could be permanent. It depends on how the chemo goes, which starts tomorrow on paclitaxel.
We’re looking at belts and holders. It’s being able to have showers with it that’s causing some tears.
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I suppose it comes down to working around it. Rather than standing under the shower, maybe holding and directing the spray to areas while attached to an overnight extention maybe.
During the day a leg bag with velcro straps like you would with a catheter in or a bag directly over the area a bit like with a stoma - depends on how the drain is attached, or if it is attached to the bag. You should of had instruction about this before leaving hospital along with district nurse support at home, or clinic appointments if mobile. Did you not receive advice beforehand?
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Usually IME the bag is attached to the skin over where a drain exits, they are pretty well stuck down and waterproof so showering should be ok. If it were to come off you should have a supply of bags to replace. You’d usually see a stoma or urology nurse to explain the management before being discharged from hospital.
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The nurses didn’t really go into much detail in caring for it. Most of what we know is from research. No district nurse as my wife is only 47.
I had a nephrostomy for about four months. I was told to expect it to be permanent too however i was able to have it removed so there is hope. I was also discharged from hospital without much information and had a lot of problems getting the dressing changed by the gp. If you still have questions feel free to ask.
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My wife still has a nephrostomy and hates it.
It’s due to be replaced for the 2nd time. There’s not any communication from anyone on how long it’s expected to be in place.