Hi,
My dad has his bladder and prostate removed in October due to bladder cancer. He was initially supposed to have a stoma ( ileal conduit) but the surgeon was concerned that due to his type 2 diabetes his bowel wouldn’t heal properly so instead he ended up with stents from his kidney which I believe is a nephrostomy. Him and my mum are finding it hard to attach the bag effectively as it’s quite tricky with the stents. They are reluctant to try different kinds of bags and are using banana plasters but with varying degrees of effectiveness. He has a fold of skin which seems to be causing an issue - at the moment he’s using a Braun bag but I was thinking maybe a different style could be better - maybe one like a ConvaTec that’s designed for folds etc. The district nurse / drs haven’t been overly helpful but I’m also of the opinion that my parents haven’t been asking for help - just trying to get through the days as my dad is pretty tired and has also had a couple of infections that have set his recovery back. He’s actually in hospital now as they suspect an infected cyst on his kidney has burst. I can’t find too much information on nephrostomy procedures, help with managing them etc so was hoping someone else here might have had the same procedure and could offer some advice.
Hello Tabby, welcome to the forum. I can't help directly with your questions but a forum member called Yavapi asked related questions about 2 months ago. Some of the replies given to Yavapi may be useful to you.
I have had a urethral catheter since late 2018 and understand the need to find the best catheters and bags. Some are totally unsuited to me! Many other forum members have a stoma, having had bladder removal. They also find that it takes a while to find the best products for them once they have settled in to the routine. I therefore hope that your dad's medical team will respond to your queries if your dad is not being vocal enough about the difficulties. Best wishes, Ray
Hi Tabby,Welcome to the group.Sorry to hear about your dad’s situation.I can’t help but if you type in nephrostomy into the search box there are a few posts which might be useful.Your dad really needs to try different products as there is bound to be something suitable out there for him.Regarding the tiredness he is still early in his recovery plus the infections will have had an effect.I know that I didn’t start feeling more energetic until the end of month 3 start of month 4.I hope the hospital can help your dad and that he starts to improve soon.love and best wishes Jane x
Hi Tabby, sorry your family is dealing with these challenges. Your dad's surgery is a really big operation and everyone takes months to fully recover. Finding which bags work best for him and learning to deal with a whole lot of new daily procedures is tough just when one feels exhausted by the surgery. I don't know about bags but hope someone from this brilliant site will pop up soon and share their experiences. If you are under NHS care you should have met or been given the name of your assigned Cancer Nurse Specialist? They are magic because they come across these kinds of practical issues all the time and they are more expert on living with the treatments than the doctors. I contact mine by phone via my hospital's Urology Department. Your family seems to all be supporting each other which helps a lot xx I hope you allow yourselves some treats and pleasures to give you a lift when life is so hard. My go to is a cuppa and a big slice of top-quality cake just to remind myself life is worth living. Sending you love Hx
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