Nephrostomy Tube

My mother has a nephrostomy tube and is looking for other who has had one. Seems we are having lots of issues with it and again, like you, the Dr's don't agree on what is going on and lots of issues there. Personally, I don't trust the Dr's at all anymore.

Wendy

Gabimac,

I am so happy to see your post. My mother and I are having all kinds of issues and would love to talk to someone else who has a nyphrostomy tube. Mainly, the radioligist always put this 'wierd' type of bag in her, and the bag cannot be changed. After about 4 weeks, the bag starts to stink really bad. She poors soap in through the 'outage' hole and tries swishing it around but it doen'st last long. I've heard that the bags need to be changed ever 4-6 weeks, but these types of bags cannot be changed and her uroligist points his finger to someone else and they point their finger back to the uroligist. Have you ever had a bad smell coming from your bag and or do you have this type of bag that has the tube connected at the back and it's not the type you can easily unscrew? I really look forward to hearing back from you.

Hi Wendy My husband has incurable bladder cancer he had a large tumor removed in July this year unfortunately the cancer had spread across the tube which drained the left kidney and blocked it this caused his kidney to swell and a nephrostomy was inserted this has caused many problems he has had 3 spells in hospital during the last 6 weeks spending a 2 separate weeks he has been in for 10 days this time we were told by his doctor the nephrostomy is a foreign body and the human body does not like foreign bodies this caused infections plus confusion my poor husband does not know where he is or what day it but we were assured this will improve  he also has anemia and is having blood transfusions he was originally being treated for diverticulitis until a scan revealed the cancer by then it had spread too far to be curable this has made me feel angry and cheated.

Loretta

Hi Loretta,

She was really, really sick for a while. She couldn't even get out of bed. Her biggest problem is no longer the cancer but the nephrostomy tube. Seems like every 6 weeks or so, we are back at the hospital where she is in SEVERE pain. First time, the tube came dislogded from her kidney, the second time they said a kidney stone clogged the tube, third time, they didn't know what happened. I have to somehow get my mother connected to you. She doesn't know anyone in the world who has a nyphrostmy tube and she is feeling VERY alone in the world. Just let her know that we spoke on a website and tell her that your husband has a tube. 

Have a blessed day Loretta and I hope your husband does improve quickly. 

My wife was recently diagnosed with a fibrous mass blocking her ureters from both kidneys.  The Nephrostomy tubes were installed, and she has improved greatly. A biopsy found that the fibrous mass does contain a well-differentiated liposarcoma, a slow growing cancer.

Medical people here in the Las Vegas area have not decided what to do next.  They have scheduled an appointment with Doctors at UCLA medical Center for next week. We're hoping they can provide a good prognosis.

The tubes are a pain in the you know where, but her condition is much improved.

It really helps to explain this to someone with a similar condition.  I'll be waiting to hear your response.

 Thanks

Zen D

Hi there. I have a nephrostomy bag in my right kidney that was fitted last month because of cervical cancer (the tumour was blocking my kidney tube blocking it). As far as I'm aware it will stay in permanently, but I have a prognosis of 3-12 months. How does your husband cope with sleeping and changing the bag?

Jenni

Hi Jenni

I had a nephrostomy for 3 months after my bladder cancer surgery due to a damaged ureter leaking into my body cavity, just another drain to add to my collection. I did manage to sleep on my back mostly as being on my side was uncomfortable with the new stoma and night tubes. I changed the bag myself after I went home and my wife changed the dressings for me as the district nurse didn't turn up. During the day, the bag was strapped to my leg or I would carry it in a supermarket bag.

I was told that I might have it permanently or lose the kidney or have it removed. As it happens, after the ureter had healed, another doctor managed to reconnect the kidney to my ureter and now all is well.

CB

My husband has a nephrostomy tube in his left kidney.  The bladder tumor was blocking the ureter so the tube was needed to preserve kidney function.  He had a kidney function test prior to starting chemo last week and we understand that the results were good so the nephrostomy seems to be working.  He has been told that once he has his cystectomy and the tumor is removed.. along with everything else... he should be able to have the nephrostomy removed.  

He is coping with the nephrostomy surprisingly well. He sleeps on his side or back and the District Nurse changes the bag twice a week but I do it if this clashes with appointments.  He uses a short tube leg bag connected to the urostomy bag which is a lot better that the longer tube ones that we were sent home from hospital with as it doesn't slip.

Best wishes 

Lynn

Hi my daughter has two nyphrostomy tubes in her back to drain her kidneys.had them for five years now.but she has leg bags also connectors to change when needed.there are different sorts of bags.my girl has to pin them to her clothes if she s going out.accidentally pulled one out.caught on corner of kitchen unit .awful way of life.but she s a cervical cancer survivor.hope you resolve this with consultants. I've personally had to shout and scream to get the care that she needs

My girl has two bilateral nyphrostomy tubes and stents in both kidneys had them five years now.they are keeping her alive.i hope they can help your wife .they are a pain.cant bath or shower .restricted in a whole new dimensions of life