NEPHROSTOMY SUPPORT

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

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

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 .

Hi mary,

After having chemo and radiation for cervical cancer I've also had bilateral. I've never used the night time bags, they seem so tedious but like your hubby I'm constantly aware of how full the day time bags are. I'm guessing he has the belt to hang them on? So long as the pipes aren't kinked they will flow so you can sleep on your side, just make sure its not too taught from your back. I toss and turn all night long...a nightmare. When my other half spends the night away I take the belt off and let the bags just lie next to me, obviously always aware to move then if I flip over. I hope its not permanent..apparently it scars your kidney tissue everytime they change them. So far if the bags are full the urine goes back to the bladder which in my case is solid so I'm incontinent needing nappies at night.

I'm 36 and about to get major surgery to have all my renal bits rerouted into a stoma bag. I hope your man has some light at the end of the tunnel, its a lovely and embarrassing situation to be in. 

Breast wishes, Kimi xxx

Ps. Due to gravity the flow at night is not as good as when you're sitting up... I can get away with pads during the day but at night time I would be soaked. Hope he's ok otherwise and is clear xx

Hi Mary,

My name is Carol and I had double nephroscomy tubes put in on 24/12/2015.  I had sepis in one kidney but due to Radiotherapy damage I wasn’t able to pass urine.  I had no womb, ovaries, Fallopian tubes or cervix and was diagnosed with vaginal cancer in 2012.  I use the night bags because of the urine output during the night.  Yes I find it very frustrating having to sleep on my back all the time specially as I always slept on my sides before the tubes were inserted.  I have them in 4 years now and I just have got used to them now. I lie with a pillow at either side of me which helps to take the pressure of the tubes, as my tubes are in my back. Mine are permanent and it’s so frustrating because I can’t wear a dress due to the leg bags.  Tell your husband from me to try different positions in bed but use plenty of pillows for support.  I’m sending hugs and prayers for you both xx. 
in my case having the nephroscomy tubes saved my life.  Because they were inserted on Christmas Eve I tell my hubby they are a Christmas present from the Lord. I call them my Gucci bags lol.  Sunny days ahead to look forward to. God Bless xx