Hi everyone, I am new here and given your details by a moderator on an adrenal/thyroid forum I am registered with in the hope I can find help for my mum. I live in England and my mum was diagnosed with stage 3 bladder cancer and had her bladder removed, following a course of chemo.
My mum has had nothing but problems since the removal and now gets "infections" almost constantly! Her urine gets unbelievably smelly, it keeps changing colour from "champagne" to quite dark orange. It gets cloudy too and she also gets constant "clogging" in her urostomy bag, which can block her tap and make it awkward to empty her bag. Sometimes her urine samples show infection, sometimes not, despite smelly urine etc. Due to so many "infections" she is now taking a permanent antibiotic everynight, but its not stopping the problem.
when my mum gets an "infection" now, she gets the smelly urine, but also gets hot and cold and angry to the point of psychotic episodes!!! I have had to call ambulances, but they wont come out due to the aggressive behaviour, to which then the police are called and the mental health team!!! My mum is eventually given a strong course of antibiotics, which helps, start taking her permanent antibiotic and night again and then it all starts again, we have had enough!
Her silly urologist said its backflow and that my mum doesn't empty her bag often enough but we have proved this wrong and he thinks your bag should have nothing in it at all!!
I have wondered about it may being some kind of rejection, but my mum hasn't had this "infection" issue all the time shes had her bag. I also wondered if it was maybe caused by vitamin and mineral deficiencies, but do not know enough about it.
I don't know if it helps, but about 2 months ago, my mum was taken to hospital by ambulance about 4-5 times in 2 weeks due to infection in her gallbladder and had to have her bladder removed and its since then she has had the "psychotic infections".
I am at the end of my tether, I am disabled myself and cannot cope with my mum being so ill. I appreciate any help or advice anyone can offer me.
best wishes
sharon