Infections Since Bladder Removal

[Alicat58]

My friend had her bladder removed in October 2014 and will permanently have a stoma and a bag with the usual flushing out of tubes etc. A couple of weeks after being discharged, she became seriously ill and was rushed to hospital where it was found that the had E coli and ESBL.
Since then, she has never been well, has had five admissions to hospital after becoming sick and feverish, each time being told that it was the same infection.
I received word yesterday that once again she is in hospital. She has told me that the artificial bladder was put in her small bowel and I may be way off here but is is possible that there is a perforation in the bladder which is causing waste to get in from the bowel? Has anyone had a similar operation and/or similar problems.
My friend is only 45 years old and has previously had ovarian cancer and now, 7 months after this latest operation she is understandably getting very depressed. A doctor gave her some notes to read yesterday which she took a picture of with her phone and it means very little to her other than confirming that the infections are still there and that no oral antibiotic will help. She was recently in hospital for 2 weeks getting antibiotics through a drip but even that has not helped.
There is something far wrong and she is worried about a constant pain in her kidneys and I am beginning to fear for her life.

[Sqad]

If there is one cancer that i would not like to get, it would be bladder cancer, not because the prognosis is that bad, but that the treatment is almost as debilitating as the disease itself.

Your friend has had a total cystectomy for malignant disease which although major surgery is not that uncommon. The problem is, what to do with both ureters ( drainage tube between kidney and bladder, which are now left "dangling")

They can be brought to the surface of the skin (urostomy) or, more recently artificial bladders are made from a piece of intestine and the bladders are joined to the piece of intestine.

From my description, one glaring problem stands out and that is at some time the urinary system becomes in close contact with bowel contents and that is bad news, as urinary infection is inevitable and that is happening to your friend.

\\\and I may be way off here but is is possible that there is a perforation in the bladder which is causing waste to get in from the bowel\\\

She has no bladder.........but if you mean could the artificial bladder be leaking, then that is very unlikely as it would cause severe peritonitis and that would be obvious to all.

This is just a resume of my knowledge as i am not an expert in this field and up until now have no personal experience of this.

Rough call for your friend and not a good outlook.

[Alicat58]

Thanks Sqad, since her op, she has not seen the surgeon who did the operation and cannot get an appointment with him until July. No-one has yet given her a prognosis and after months of antibiotics, firstly oral and now via a drip which are no longer working makes me wonder if there is any hope for her and how long it will be before her body just shuts down.
Very sad.

[Sqad]

\\\\ firstly oral and now via a drip which are no longer working makes me wonder if there is any hope for her and how long it will be before her body just shuts down. \\\

That is the bottom line Alicat.

\\\\\she has not seen the surgeon who did the operation and cannot get an appointment with him until July.\\

That is totally unacceptable, as somebody, some member of the family should have been told of the facts and prognosis.

Tough times ahead Alicat.

[Alicat58]

Hi Sqad, since you answered the above question my friend has been in hospital another twice and was discharged yesterday after intravenous antibiotics. The doctor has only now decided to tell her that they cannot get rid of the infection and she will have to go into hospital on a regular basis to be given intravenous antibiotics.
The worrying thing now and which has not been explained to her is that she has constant back pain. Scans have shown damage to her kidneys and one is working at 20% and the other at 80% but the doctor insists her back pain is muscular as there is no such thing as kidney pains. He also says that as the function adds up to 100% this means that she has the equivalent of one fully working kidney which is all she needs.
My question is what is damaging her kidneys and because they both have reduced function does this mean that she will continue to lose function in them both?
She believes that this is fate and must have been meant to happen but my instinct tells me she should be causing a stink about why it was never explained to her, pre-op that any of this could occur as she does say that she would have rather dealt with the incontinence as she has felt ill and in pain every day since October last year!
I know you said the prognosis was not good but I feel so helpless and feel that someone higher up than her consultant should be made aware if her suffering.