Nephrostomy woes

[JustKBO]

Can anyone give me some insight into how they fare with their nephrostomy. I don’t think I have gone one single day since I’ve had it (June) without some sort of discomfort. It itches, it feels like what I imagine a cigarette burn to feel like, it can feel like pin pricks. It constantly looks sore and infected and oozes stuff that forms little scabs that pull on the stitches. Now and again they use nitrate sticks to burn off swollen skin.

Now my urine is smelly and the wee in my bag is reddish; yet I have no fever, no temperature, no nausea. I know when I have an infection as I’ve had two, one turning to sepsis for which I was hospitalised. I suspect a urine infection but don’t feel it’s an A and E issue so I’ll hand a specimen in to my GP but what I really want to know is IS THIS NORMAL FOR A NEPHROSTOMY or am I just unlucky? Sorry it’s a bit yeuk to read but I’ve suddenly had enough of dealing with it Day to day and need to know how other people fare.

Thanks.

[CharlotteSo_UK]

Hi. My mum has a nephrostomy too. Is yours on your front? Mum has found that more comfortable than when she had it in the back.

Mum says the skin around it can feel itchy - but probably because it does not get much air.

Do you get the dressing changed weekly? Do they use any padding? Mums was a little red recently so we were given an iodine patch to use. I’ve never seen it look so clear! No gunk or redness.

Mum changes the bag every 5-7 days and the tube should be changed every 3 months.

One other thing, mum found the stitches irritating at first. Now she doesn’t have them and the tube stays in place just fine. Could it possibly be that irritating your skin?

Mum has had blood in her wee too. Always been infection which has also led to sepsis.

Hope all goes ok with the dr.

[JustKBO in reply to CharlotteSo_UK]

Thank you fir taking the time to reply. Mine is on my back. I think you are right about it not getting enough air the padded dressings do get hot I suspect it may get more comfortable in winter. It sounds to me as though our issues are very similar so it’s probably just what I’ve got to deal with. Love to your mum and again thanks to you for replying. 🤨

[Kkaren]

Oh I sadly know how you feel. I have a nephrostomy on my back and it’s been there since February due to Covid and me also having chemo over that time. As district nurses try to avoid being in and out of people’s houses my husband has been changing my dressing weekly. I can go for weeks and then for whatever reason the skin under the dressing becomes a bit red and sore. My nurse gave me something to paint on the skin to form a protective barrier. I think a lot of the problem is due to the hard plastic bit of the dressing having been putting pressure on almost the same spot for months. As my husband says it is like having a Lego brick strapped to your back. I just cannot get comfortable in bed at all. Fingers crossed it is coming out next month unless Covid gets involved again! Good luck with yours x

[CharlotteSo_UK in reply to Kkaren]

Hi. I read recently that manufacturers guidelines say the tubes should be replaced every three months. I know with Covid it is difficult, but I still can’t see why hospitals leave these things in for such a long period of time. It’s not fair on the women who are more prone to infections. Mum had hers done in November last year, replaced in July. She has had an infection pretty much since June time and it’s still not gone. In fact, she has been admitted twice this week alone because of it. I keep saying oral antibiotics are not getting to it, but without being able to be in the hospital with her, I can’t get that message across!

They put that plastic thing on mum the last time they changed the tube. I took it off! Not sure whether I was supposed to but mum is more comfortable for it. I also change the dressing weekly but do occasionally email photos to the practice nurse if I think it looks sore.

[JustKBO in reply to CharlotteSo_UK]

Hi Charlotte it’s looks as though I never replied to you after you took the time to write to me. I’m so sorry. I guess events must have over taken me. I had the nephrostomy removed and then caught Covid. My husband was locked down in France and me here. All a bit grim but things got much better without the stent and then without the nephrostomy. I hope all is well with you and your mum. X

[ivanco1]

Hi, old post but I will reply. My mother has JJ stent (tube in the ureter) as we asked instead of nephrostomy bag. Could't they inserted Double J stent in your case?

[JustKBO in reply to ivanco1]

It’s all good so far thank you. They took the stent out and I feel like a new person. Thanks fir your reply.