Bilateral nephrostomies and bladder infections

[Jay10]

My husband has had bilateral nephrostomies fitted since Feb this year, he had kidney stents before that. His cancer is advanced and diagnosed in 2013 after bladder retention caused him to be admitted to hospital ( we are in UK). It was decided to put him on hormone injections and he has them 6 monthly, Decapeptyl. He had a catheter for 18 months then a TURP which wasn't successful so he self catheterised until the prostate grew over the openings into his bladder hence the nephrostomies. Over the last 5 months he has had pus collecting in his bladder for which our GP gave various antibiotics until we decided to go to A&E and they did a bladder wash. We had to go back to A&E yesterday for another washout. Has any here got any such problem and how have they overcome this problem. We are seeing our Oncologist on Friday so would like a few ideas to discuss with him. He wasn't at ant time given any treatment to shrink the prostate so rely on the hormone treatment up til now.

Sorry this post is rather long and thanks in advance for your help.

Jackie

[bhammel]

Don't know if this will help but I use condom catheter which lets me sleep through the night vice hourly pee calls. Had sepsis from foley so after years am getting rest and also not using self catheter at all any more. Just finishing with kidney stone treatment also.

[Jay10 in reply to bhammel]

Thanks for your reply, Mikes problem is that no urine comes via the bladder to keep it flushed through. All urine is discharged from the tubes in his back and it's the secretion from the enlarged prostate that they think is causing the problem.

Keep well, Jackie.

[bhammel in reply to Jay10]

My prayers for Mike.

[pkafka]

In 2014 I had urinary retention. The night of my biopsy I closed down and had to go on a catheter for the next 7+months. No one knew for sure but it appeared to be the tumor in the prostate that closed me up. I found a world class surgeon who performed a prostatectomy and I came through the surgery able to void once again with no need for a catheter and best of all I was contenent. Just saying- it might not be the size of the prostate, but the size and location of the tumor. I hope his condition can be corrected at some point.

Pkafka

[Jay10 in reply to pkafka]

Thanks Pkafka, I am glad that they were able to operate and that your bladder voids in the normal way. I assume you are in the States as they seem to treat things very differently there.

When we see the Oncologist on Friday we will probably ask if surgery could be an option. This has not been offered as the PCa has got away into the pelvis and top of one femur.

Last time he had a review they were talking about chemo but these bladder problems seem to have an effect on kidney function.

It's good to get some help from folks here as we travel this road and gives us support.

Take care and keep well now that winter is on the way.

Jackie

[pkafka]

Before my surgery I saw a number of doctors for opinions. My Oncologist sent me to see a few urologists who specialized in "urodynamics". This is a battery of tests that determine whether the bladder is functioning properly (enough pressure) and other tests. Before these tests some doctors kind of scared me with thoughts of bladder cancer and removal of same, etc. But the tests showed that my bladder was functioning normally, it was just that my urethra was squeezed to the point that I could not pass urine. These findings are what led me to surgery. I am sorry to hear of your husbands compounded problems. I know that it makes life so difficult. I trust you can find good care. Yes, I live in the "states" and fortunately have access to excellent care. However - where I live, winter is not a big factor (I live in Hawaii). Yes, Hawaii is paradise until you get sick. Then California is paradise. I have to fly some 2,500 miles to get top medical help. But it is worth it for sure. My best wishes to you.

pkafka

[Jay10 in reply to pkafka]

Thanks for the info, it gives us ideas to raise on Friday with the oncologist.

Quite envious that you don't suffer winters like we do here, but as you say your trips to the medics are rather long and expensive I guess.

All the best

Jackie

[Hidden]

I've only had my friend Cathy-Ter since July 22. I was diagnosed with bladder retention in early 2013. Unfortunately, for me, no one ever told me. My new urologist was kind enough to provide me with copies of the last three years of my medical records. That's also the time I found out I had mets on my spine, hip and sacrum. To say I was a bit ticked would put it lightly. I'm having a procedure called UroLift done on the 31st. My prostate is not very big at all, its just super tight around the urethra. I'm 57, so I hope I can pee normally, at least for a few more years. I think my kidneys have been spared, but the pain is insufferable. Especially when you are first cathed. Sorry to blab, I'm sure you've been there. Best Wishes.

Joe

[Jay10 in reply to Hidden]

Hi Joe, sorry that you were kept in the dark about your diagnosis but glad that you eventually got some help from your new urologist. We both hope that the Urolift op goes to plan and that you are spared catchers for the future.

We will ask how the prostate is situated in relation to the bladder and urethra and see if surgery is an option but I don't hold out much hope on that.

Take care

Best wishes

Jackie