Nephrostomy

A bit of good news today however, I got an email from the Sheltered Housing Complex I applied to to tell us that they have received our application form and it will be getting processed and we should hear back from them shortly. However long `shortly` is. Take Care.

Vicky x

Hi Vicky

Gosh it must really seem like one thing after another for you both to cope with. I don’t have a nephrostomy since I’ve had my bladder removed and have a urostomy but I have a number of cancer friends who have been living with either one or two nephrostomies for a long time. 

I wouldn’t say any of my friends love them, but the alternative is of course worse. It seems a relatively quick procedure to have this done, and then the thin flexible tube comes out through your back to attach to the bag. The bag or bags can attach to the leg, or be clipped somewhere at your waist-obviously most of my friends are women, and some carry the bag in a bum bag round their waist which they say is easier to deal with. It needs covering for being in the shower, and I think the main difficulty my friends have all reported is sleeping, if they typically slept on their backs beforehand.

For all that my friends may not love having nephrostomies, they do the job, and so they accept them as a necessary part of their lives now. Since Jay already has a stoma he copes well with, I hope he could come to terms with another bag. I’m very used to having two for life! Maybe once he has a chance to think it through he will see it could be ok, but as you say it has to be his decision.

Good that you’ve made a wee bit of progress on the housing front though. 

Sarah xx

Thanks Sarah!

Yes, I have spoken to him about it and he has said he has been thinking about it a lot. He sleeps on the side his stoma isn't on so it now worried that that will be the side they will put this other bag on if he decides to go with it so he's still undecided. I think if they could position it at the side of his stoma that would help a bit. I said to him if he doesn't get it done his kidneys may shut down and I said to him do you just want to die and he said well I am going to eventually. Yes eventually but hopefully for not another good few years. They do say on the help pages here if chemotherapy reduces the tumour in his pelvis they can reverse the nephrostomy. Has anyone had this done before.

I think it is fact that he has been through two operations already. One for the stoma and the other for the tumour but I'm trying to explain to him that this is not a major operation, and it is done with anesthetic and with a wire going inside him and a hospital stay afterwards just to make sure everything is ok, and no infections are happening. He says it's ok for me to say get it done and he is the one who has to go through it and I get that but the alternative is just not bearable thinking about. 

Hi Vicky

But the nephrostomy is a tube coming out of the back, so it’s not on the front of the body and the bag isn’t attached to the body in the same way as a stoma bag. So it’s up to the patient where to put the bag for the easiest way to sleep.

Sarah xx