I was originally told I would need a stent in my ureter as the cancer has wrapped itself around it. Just had a phone call from my Macmillan Nurse advising that Urology want to give me a Nephrostomy instead.

Has anyone had this done? What was your experience?

Hi @SamG

Did they tell you what the nephrostomy would involve? I don’t have one as I’ve had my bladder removed, but a number of my friends do have them so I’ve learned a bit about them. x

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Hi Sam,

I dont have any experience of nestophromy but i know @Rachael_R had one so she may be able to answer any questions.


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Hey! I’ve had my nephrostomy for 2 years now. I had bilateral nephrostomy’s after the cancer spread to my bladder and I ended up in kidney failure. My right one was removed and it’s been fine. The left is still in place and my ureter is completely gone. I am on the waiting list for an extra anatomic stent, it’s not like a normal stent, it uses the tube that’s already in place for the nephrostomy and they pierce a hole in my bladder and it flows that way!
Personally, my nephrostomy has been troublesome. I’ve had sepis 3 times and I’m just out of another hospital stay after it continually blocked and caused another bacterial infection. In May this year, they made an arse of the tube exchange and it’s blocked ever since until I got changed last week.
I use urostomy bags for mine and to look at me, you wouldn’t know that I’ve got it, until it fills and I look like I’m smuggling something in my waistband. It’s a complete pain but considering how bad stage 4 cancer is, I didn’t think I’d come out of it unscathed. I’m back at work now, been abroad, can’t swim or going on fairground rides but at least I can still watch my daughter do these things. Hope this helps. X

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Thanks Rachel,

They say mine is only for the length of treatment, I’ve given it a nickname of the Frosty Bag to try and lighten it up a bit and make it a bit less scary for myself.
The sepsis sounds scary have they said what is causing it?

Hi Lilypingu

It’s a temporary bag, on my back rather than the long one you wear on your thigh, I haven’t had much info yet but should find out more on Thursday.

Thanks AMF

That’s good that it’s only temporary. Unfortunately mines are forever, not just for Christmas :rofl:
My body is constantly rejecting the plastic, there’s a bug in the tube all the time and I managed to get off antibiotics for almost a year but since the blockages, the bugs have been running wild. X

Wow, Rachael, I hope they can sort it out for you, your positivity is amazing, inspiring to me. I’ve decided I’m just going to tell them to do whatever they need to keep my kidney healthy and I’ll just deal with it.

Just need the waiting lists to move. I was told the surgery would be done within 8-12 weeks back in October but then covid hit again. Getting diagnosed with cancer during the pandemic was just a stroke of pure bad luck. It’s hasn’t helped and made the battle so much more difficult. But we do what we have to do to get better and get back to our new normal. Hope all goes well, always here for questions! :blush:

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Hi i saw your post so thought id share my journey wirh the lovely fashion accessories that are my bags :wink:
I had my left nephrostomy fitted august 2020 before my treatment started, said it was temporary but i still have it.
I got the all clear april 2021 but ive been having bad effects from the radiation which caused my other kidney to start failing a few weeks ago and after a failed attempt at a stent i now have a second nephrostomy.
They say you can go swimming etc but you have to change the bag before and after so ive not really bothered but i do enjoy the occasional bath.
Also the best investment i made was a waterproof matress protector. The bags are not 100% secure and can leak.
Good luck, msg any questions xx

Thanks Donnam16,
Can I ask what stage your cancer was?

It was stage 4a x

How weird this is. My mum is in hospital after having sepsis from her kidney as it wasn’t draining properly. Because she is on blood thinners (had DVT) they had to put an internal stent in. They wanted to do the operation with the external bag but it was too risky. This means in 6 months time the stent will be needed to replaced. They said they would give her a bag if the oncology consultants say it’s ok and if the node they found blocking the kidney is confirmed as not new cancer. It’s not nice.

Hi! I have a nephrostomy for more than a year and I know I will keep it for a long time. My experience isn’t so bad. The main issue is that for the last 3 months it often blocks and I have to visit the emergency department sometimes in the middle of the night. The doctor said that it is normal to happen due to salts but I will try to find a way to prevent this by consulting an urologist. I wish you to adjust quickly and to not have any problem with it!

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So I had my op yesterday for the nephrostomy, the doctor came in to speak to me before and said they would put the nephrostomy in first, then try for a stent, if the stent was successful they would remove the nephrostomy.
First of all what I would say is this was such a quick and easy process to go through, I had sedation and only woke up when they were putting the stent in place. I really assure any women who are going to have this done that it’s nothing to worry about.
I ended up with the stent, it’s a bit uncomfortable, feels like I need to wee all the time and I can feel it inside my bladder. We’ll see how it goes!

That’s good news Sam, I know neither option is great but good that you found the procedure not too difficult. Quite often its the thought of it thats worse rather than the actual procedure.
You’re now all ready to start good luck.
Keep us posted any questions just shout.
Take care xx

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