Bilateral Nephrostomy Aftercare & Living With Them

Hi guys, me again. It’s been a while since I was last on here talking about my life post stage 3 cc, the treatment after effects complications with my bowel and having to have a permanent colostomy bag, which I am year on from. I was also talking on another post about urinary issues I was having with recurrent UTIs and very bad incontinence. My cancer hospital got me under their specialist urology team after alot of to and fro ing from my local hospital to them. All of the surrounding tissues from the radiation site have become hard and fibrous, including part of my bladder as apparently the tumour was starting to attach itself to the bladder at the point of diagnosis (this was the first time I had been told this which was 4 months ago), however, surgery was set for me to have a urostomy last month. Unfortunately my surgeon was unable to do it due to the tissue condition. Therefore I am due to have bilateral nephrostomys fitted later today. This was certainly not something I have been fully prepared for and I am very anxious and worried. I would appreciate any advice regarding this. I am worried that my quality of life is going to diminish some what. I’m only 43, I already have a colostomy bag and now I am having to have this done. It’s certainly been a very gruelling, upsetting 2 years. I would be grateful for any words of support or advice, especially from any fellow warriors out there who have been through a similar experience. Thank you all :purple_heart:

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Carly love. It’s beggars belief what you’ve had to endure and now this. Cancer really just keeps giving doesn’t it!

I don’t have any experience but I wanted to give my love and support. Maybe try instagram as there are a number of ladies on there that I know have a nephrostomys

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@carly42

Hi , i am stage 4 incurable but currently NED but have had infection, fistulas and endless other rare PITA issues.

I think the nephrostomy takes time to get used to but you learn to live with them. There is another lady living very well with them for 6 years.

I think the only real detrimental effect is no swimming EVER.

If you have any worries or need a moan to another bag lady i’m here, if i can be of any support to you anytime please feel free to message me directly.

First suggestion is wearing at waist on an elastic nephrostomy belt easily hidden under clothing rather than the leg bags.

Be kind to yourself sweetie sending you a big hug :hugs: Hoping this is the last hurdle to wellness for you :kissing_heart:

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Hi @carly42! I am so glad to read an update from you. I think of you often. You have had such a tough go. I’m another one who seemed to get a few of the uncommon side effects - fistula, infection, colostomy. I almost needed stents/nephrostomy but things started to turn around for me in the Knick of time. While one of my kidneys has suffered irreversible damage, my one good kidney is holding its own and doing its job. I have adjusted to my colostomy and am back at work full time but things were touch and go for me about one year ago.

I wish I had answers for you, but have lots of hope, good vibes and love. Nephrosomies will be another huge adjustment, but you are here, you are alive scars and all. People don’t always understand the weight we carry as survivors, but I will continue to embrace being a survivor, even if things don’t go back to the way they were.

You aren’t alone, dear. We are all with you on this journey.

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Thank you to all you ladies for your kind words and thoughts, it truly does mean alot to me :heart: I’m not on here loads but whenever I am, I always feel the love and support from you all.
So update time… My bilateral nephrostomys were fitted on Thursday and I was kept in overnight to monitor the output and also because I had been put on quite a bit of sedation at the time. I was discharged on Friday with frankly hardly any advice and was given a small handful of bags, day and night ones. I have the bags that stick directly to the skin and the tube sits inside them. I was and still am quite sore at the insertion sites, however pain relief does help to take the edge off and I’ve been told that the pain should start to subside after a few days. First night at home went pretty well, attached one to a night bag and left the other one as I sleep in bed with my hubby. I’m able to sleep on my sides and back and just need to reposition myself if start to get uncomfy. When I woke earlier today, I emptied the night bag and my bag which hadn’t been attached was around half full so emptied that as well. I’ve managed to have a shower today with the bags on. Takes me a bit longer to shower etc than it used to but that’s mainly due to drying the bags and skin around them, plus making sure I move a bit slower and carefully. I have an appointment with district nurses on Monday who will be changing my bags for the first time and they will also be showing my husband how to do it too, that way I won’t have to keep going to them all the time. I feel pretty ok with the bags though. I think it helps that they’re the stick on skin ones and as I already have my bowel stoma it’s something I’m already familiar with. Rightly or wrongly I do try my best to get the excess air out of them so they can lay as flat as possible against my skin so they’re not as noticeable under clothing. Just wish there was a way that they could be anchored to skin more instead of just hanging there. Anyway, as I say, I feel like I’m coping well with them though, I’m managing to do everything independently with them, my incontinence is no more, I am getting little tiny bits coming through urethraly, however I’m managing to catch most of that by going to the toilet. I do feel so happy that I now have dry skin down there and that my skin can actually now start to repair itself and stop being sore. Believe me that at first I was adamant that I was not going to have this procedure done, however, even a couple of days into it, I’m so glad that I did. I feel like I have regained some control and some of my life back. I appreciate that life will never be quite the same and that this may end up being as good as it gets but the main thing is that I’m still here and I’m still fighting and whilst the cancer has been beaten, I refuse to be beaten by the scars it has left me with. Thank you again my fellow warriors, we are all amazing. Much love to you all :heart::heart::heart:

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Hi @carly42
It sounds like you are doing really well considering everything you’ve been through. I hope you start to feel better now and more comfortable. Sending my support to youx

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