Nephrostomy bags

Hello Kellyboo83

I'm sorry that you find yourself seeking our advice at such a young age. I had a right kidney nephrostomy for three months but he'd it reversed successfully by a surgical genius.

I learned that I needed to drink plenty of fluids as well as avoid alcohol and caffeine. I slept in an upright position, supported by several pillows, so I wasn't putting any pressure on the pipework and plate securing it where it entered my back.

I took ibruprofen to dull the ache in my back and had to change the dressings myself as the district nurse failed to turn up (they are like gold dust anyway).

On a bright note, I put my nephrostomy bag, surgical drain bags and urostomy drain bag in a variety of supermarket carrier bags and eventually escaped to the outside world.

You're going through a daunting time but you will get through it. When you get your results, come back to us and we'll be able to advise you further.

CB.

Thank you for your reply. I am on a number of medications and oxycodone is one of them so pain is controlled at the moment. 

I just am struggling to get sleep even though I am on amitriptaline at bedtime. 

I will I’ll try the several pillows as actually when was in hospital I had the bed upright so I didn’t consider that actually I would need to be more upright at home also.

i will join correct groups as and when I have answers as to what I am dealing with I’m just very frightened and worried at the moment and the sheer thought that these two bags are keeping me alive is so terribly daunting 

thank you again 

Dear Kellyboo83, in my experience with my husband's bladder cancer over the last few months you have certainly landed in a supportive place which is part of what you need at the moment.  Even if people have different medical issues we all have kindness to offer. From me I hope it is some comfort to you to know I just sent up a prayer for you and your family and that you'll find supporters. 

Also although your partner has to work, my standard bit of advice is for him to register with your local county/city  Carers' Association.  What exactly they offer varies from place to place but most have the council contract for doing a Needs Assessment and this and other help such as networking can be extremely useful. My first needs assessment was done by a lovely staff member on a home visit so I didn't have to do any form filling at all. Also get onto Social Services for yourself. Who knows, while you are poorly, the needs assessment for you could perhaps lead to things like help with the children/shopping/housework, also maybe benefits advice as that could come in handy too. In many places the Red Cross rent out equipment that may be of help to you, maybe a bed prop to help you sleep more upright if needed. And other people on here will tell you about all sorts of help from Macmillan, which I believe also includes some financial advice.

Very much hoping this is of use to you Kellyboo,

Denby

Hi again kellyboo83, in case it is of any use, I have just been reading the Lidl non-food specials which will be on sale in our area tomorrow Sunday. These include a sturdy-looking foldable mesh-on-steel-frame backrest for £24.99 that would support you in sleeping propped up more like the hospital bed backrests. Offer do vary by area so check online, you can enter your postcode,  before you rush to shop or send anyone.

All the best and wishing you better sleep,

Denby

Kellyboo83 I am new to this site and group, and also live in the US. My mom has been dealing with stage 4 bladder cancer for over a year now (2018) and has routine replacement of her bi-lateral nephrostomy tubes by the interventional radiology group about every 11-12 weeks. I am sorry for situation and will certainly pray for some answers. For the most part, my mom uses a mild non narcotic pain reliever at night, and acetemonophine during the day. She has a relative care for the bandages once a week and takes great care when moving about, siting down, or even simple movements. I am not entirely sure of her regiment, but I know without those bags she would have gone into renal failure and then been subjected to kidney dialysis. 

As I gather more information, I will be glad to pass those details along and hopefully benefit you or someone else.

Hi Kelly apologies for coming late to the party but hope my belated welcome will give you some assurance that you've arrived at the correct place for help and support.

Others have given you some excellent advice.

Finding a good sleeping position is essential to enable you to get a good night's sleep especially with the three young babies and propping yourself up with extra pillows as Crustybladder suggest as is the use of bed supports.

Adjustable bed supports can be obtained from many outlets including Amazon, Ebay, Argos and NRS Healthcare.

I have put together a few links to literature that might be of interest to you

The second part of this Nephrostoma by Macmillans

might be of interest to you.

Macmillans on Managing Body Changes

Nephrostoma bags District Nurse 

Info on bags and necessary items (1)

I'd like to invite you to join our Ileostomy, colostomy, urostomy and any other stoma support group and meet the members, this is a place where members meet to discuss any issues they maybe experiencing and look at the essential products that they use.

You don't have to think that you are alone in this journey we are all right behind you to give support, help and advice at the minute you need it.

And my piece of advice is to always make sure that you have sufficient spare bags and essential items available at all times.

Please keep posting and keeping us informed how you are getting on.

Ian 

CC