General cancer discussions

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NEPHROSTOMY SUPPORT

North Ayrshire
Posted by

HI

My hubby had Bilateral Nephrostomy 3 weeks ago due to stage 4 Prostate Cancer and is really struggling to sleep at night due to both bags getting tangled. He is currently sleeping with his day leg bags and emptying them every 3 hours as he cannot get comfortable with overnight bags. Can anyone advise on how to manage overnight as he is totally exhausted now? 

He hates having to sleep on his back but when he goes on his side he is constantly aware of lying on the connectors and feels he pulling on his main nephrostomy sites.

Would really appreciate hearing how anyone else copes at night?

He is managing well during the day but feels as though his main sites are not draining properly when asleep

Kind regards

Mary 

Bodach
Posted by

Hi Mary

I'm sorry to hear of the problems your husband is having but would like to take this opportunity to welcome you to the online community and I know that you would rather not be on here but unfortunately your husband's problems have brought you to us.

I'm not sure if I can offer much help as I'm from the stoma support group but I'll try and suggest a few things.

I am assuming that your husband has both a Urostomy and a Nephrostomy as you mention both bags strapped to his legs as his nights bags are getting tangled. As the tubes for night bags are quite long would it be possible to lightly tape both tubes together to avoid tangling also instead of having the night bags on a stand on the floor could you not get a stand that fits on the side of the bed. 

Many people with urostomies and another stoma who have trouble sleeping on their sides often sleep with pillows to support their bags and tubes. Could you husband sleep "propped" up.

Is he using large capacity bags at night to give him a longer time between emptying.

As I understand it the district nurse or the GP arranges the supply of equipment I would ask if there is any alternatives to the system he is using like a different manufacturer. You could also have a word with the manufacturer of the total system as they've probably have come across this before, you could also try alternative suppliers equipment.

If he is concerned about pulling of the main sites could he not attach extra dressings to give additional security.

If he is concerned that the sites are not draining properly at night I would suggest that he speaks to the district nurse, his GP or the hospital for investigation.

I afraid that I may not have been of much help and in fact may have stated the obvious but I wanted you to know that your post has been read by someone. 

Can you keep us informed how you and your husband manage to resolve the problem.

Ian

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Zebu dee
Posted by

Hi Mary,

Im sure your husband is very frustrated.  Like your husband I had to have nephroscomy tubes because of cancer complications. Mine are not reversible I was rushed to theatre on Christmas Eve 2015 because of sepsis in my kidney, and my Christmas box was Gucci Handbags lol.   I’ve had them for three and a half years now.

I can empathise with him totally. It is so difficult to get comfortable and stop the tubes from digging into your skin.  

I connect my night bags to my day bags, then I put the night bags unto the stand and place them in separate basins on the floor.

The reason I put the stands into a basin is because the bags have leaked unto the floor and made a dreadful mess.  Unfortunately the tubing from my left nephroscomy has to go across the bed and under my feet there is no other way around it.  I purchased puppy pads and have totally covered the mattress to protect it as again there is a risk of the bags leaking, or the connections coming loose and leaking.

I got very soft sponge and the connectors which are closest to the nephroscomy site I wrap them with the sponge to protect my skin. I can still sleep on my right side but I always ensure my tube isn’t kinked or twisted or taut. Unfortunately the pressure of the connector does cause pain and I only sleep for short periods of time, moving from my right side unto my back. 

I hope this is of some help to your husband.  The tubes have to be changed every three months. I live in a little seaside town in Northern Ireland and I attend the City Hospital Cancer Unit in Belfast.  They DO NOT give any anaesthetic when they are carrying out this procedure.  It is VERY uncomfortable and painful and you are prone to an infection after the procedure. I am due to have mine changed some time in May and I dread the thought of it Mary.

Like your husband I cope during the day but I struggle at night to get comfortable.  Praying this has been of some help. 

With Blessings, hugs and love from Carol x

Brian T
Posted by

Mary.

Speak to your nurse about a the Nephsys belt. .I had serious problems with  pulling on my kidneys but now resolved as the tubes are connected to the belt with velcro which takes all the strain.

The bags hang on the belt outside your underwear in a landscape  or portrait position if that makes sense.  No more having them on your legs, I can now even wear shorts.

Suggest you also ring the manufacturers helpline for more information.01604 595696.

When you get the leaflet on it , it looks a little bit complicated but it's not, just follow the steps.. not sure if you can come back to me on this site but if you can and you have any questions please let me know

Best of luck to you .