bilateral nephrostomy

User

Posted 11 Jan 2026 at 07:39

Hi all.

I haven't visited this site for a while now but would appreciate anyone's input on experiences with bilateral nephrostomy (have updated my profile to reflect current treatment).

My husband is currently in hospital following this procedure which was necessary following AKI (Acute Kidney Injury) caused by bilateral hydroureter and hydronephrosis. He also has a catheter in place but I think this will be coming out soon.

He finished Docetaxel rechallenge (10 cycles) in September and developed significant urine problems within a very short time after this but, until this week bloods were always okay (creatinine on admission 539).

Does anyone have any advice/experience of either nephrostomy in general or, more specifically, as a result of bilateral hydroureter and hydronephrosis?

Understandably he is very worried about how this will impact on QoL. The last year has been incredibly difficult with multiple hospital stays and poor QoL and we were really hoping this would improve once the chemo finished!

Any advice would be appreciated

Thanks in advance

Mags

User

Posted 11 Jan 2026 at 14:35

Hi Chris

Thank you for your reply - I will keep my fingers crossed for you that any complications down the line are a long way off!

Thanks

Mags

User

Posted 12 Jan 2026 at 18:10

Hi Mags, Sorry to hear your husband is in the hospital and I hope he recovers soon. We don't have experience on nephrostomy, but I am replying to bump up your post hoping someone else who has experience can advise. Best wishes to you both.

User

Posted 13 Jan 2026 at 18:52

I've only got one nephrostomy, which I've had for the past 9 weeks. Problems to date-

Getting used to external plumbing and worrying about the pipe being pulled out all the time!

Night bags - wife and I had to swap sides in bed, she was not impressed!

Infections - I'm on my 4 th round of antibiotics, as the site around the tube keeps getting infected.

Itchy skin under dressing - my body doesn't like to constantly be covered by waterproof dressings!

I haven't had a pope change yet, so I can't comment on that yet

Does that help?

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User

Posted 11 Jan 2026 at 14:18

Mags , sorry can't help with your situation, I have CKD and a permanent suprapubic catheter, I think I can expect some complications later down the line. Hope you get a resolution soon.

Thanks Chris

User

Posted 11 Jan 2026 at 14:35

Hi Chris

Thank you for your reply - I will keep my fingers crossed for you that any complications down the line are a long way off!

Thanks

Mags

User

Posted 12 Jan 2026 at 18:10

User

Posted 13 Jan 2026 at 18:52

I've only got one nephrostomy, which I've had for the past 9 weeks. Problems to date-

Getting used to external plumbing and worrying about the pipe being pulled out all the time!

Night bags - wife and I had to swap sides in bed, she was not impressed!

Infections - I'm on my 4 th round of antibiotics, as the site around the tube keeps getting infected.

Itchy skin under dressing - my body doesn't like to constantly be covered by waterproof dressings!

I haven't had a pope change yet, so I can't comment on that yet

Does that help?

User

Posted 13 Jan 2026 at 20:45

Thanks for this. Yes very helpful. We haven’t had to encounter night bags yet as still in hospital.

infection rate not good but also not surprising really, so will be on the lookout for that.

i think in terms of having one or two nephrostomy’s there isn’t much difference, except with pipes on both sides there’s no advantage to swapping sides of the bed!!

Going by what I am reading on your profile, having the nephrostomy isn’t going to affect the option of chemotherapy and that was one of the things I was concerned about.

thanks again

Mags

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