Living with a Nephrostomy Bag

Hi Yavapi . Sorry to hear your partner is having problems with his bag. I've no experience of this but I am sure others will be along to help. I hope you can get it sorted soon. Best wishes.

Hi Yavapi,

I have had irritation/allergy because of the adhesive in a stoma bag (and also the wrong spray). I am allergic to a number of things and it was difficult to get this right (they changed the type of bags etc I was using when I left hospital to ones that were not non-allergic for me and I had to get them to change them back and to treat the rash.) It sounds like your husband may have a similar problem..

I have an allocated stoma nurse rather than a general district nurse. Stoma nurses deal with other bags as well as those for stomas I think - and the bags are all produced by the same suppliers.

If I were you, I would contact the hospital where your husband was treated and given the nephrostomy and talk to the nurses that started him off with the bags there. My hospital nurses referred me to the stoma nurses in my local area for them to deal with me and you may have a dedicated stoma nurse locally too. ((It was the local one that changed my bag etc but did change them back to the right ones after I had a serious skin reaction). If that doesn't work, your GP should know how to contact the local stoma nurse.

I hope this works.

All the best,

Latestart

My son has the same issue with his nephrostomy bag and sometimes it leaks and I change it as it would take too long for the district nurse to come we live in a small village. District nurse comes once a week to change it but it does get painful. Hope things get better for your husband x 

Hi there,

My 83 year old Dad had two nephrostomies fitted early November.  Sounds like he has the same system as your partner - a urostomy bag fitted onto his back rather than the tube connection directly into a waist bag or leg bag. Am. I correct?

Where are you based?

Dad has had problems with connectors popping off (we've resorted to a bulldog clip on two occasions) but of most concern is urine pooling in the bag when he is laying down and degrading the baseplate which keeps coming adrift.  We are calling out the district nurses all the time and the washing machine seems to be on constantly 

He is hopefully changing to the Nephrostomy UK Single Nephrostomy system tomorrow, similar to the Manfred Sauer system. 

I suggest you look these up on Google

Also  if you are on Facebook,  join the very useful group Nephrostomy Support UK. 

Hi we spoke to the hospital where he has his bags changed and they didn't seem interested, so i borrowed the formulary book off my tvn Nurse and recommended a change to the spray they use, which they have kindly done.

As for the connectors popping off, her has done an adjustment which works, and i think managed to get a tude that doesn't pop off. Its when he sits or lies in bed. Its so restrictive only allowed to lie on one side, and we don't sleep in same bed as i have to have an elevated version due to my own medical issue. I will google the UK single though, Thanks Yavapi xx

oops, responded above re popping off, my husband made his own adjustment to stop them popping off and he managed to get the hospital nurses to provide better connectors.

As for degrading the baseplate, i'll have to ask him about that aspect. he leg bag fixes to a stand beside the bed.

sorry i'm not techie enough to do Facebook. And my previous work didn't allow for me to either.

I will look up those systems on google, when i have a mo, so thanks.

yavapi xx

Ps we are based in the northwest, north of manchester.

Another avenue is to contact bag etc suppliers and ask them about your issues. They are keen to supply samples as well as that often leads to a prescription change. My urostomy bags are Welland (Manuka honey added to the adhesive plate to control irritation) and Coloplast spray to which fortunately I am also not allergic.

Hope that helps. You could also try the Urostomy Association who are very helpful and knowledgeable.

All the best,

Latestart