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advice for my mum

4 years 11 months ago #47377 by sprog
Hi Cynthia,

Thankyou for your message and advice, its very much appreciated.

I doubt my mum is drinking enough and she just drinks tea and coffee, she said its mostly water so its ok! I think they have tested to see what bacteria is there, but I don't think they have found one, but a strong course of antibiotics clears her urine of darkness, cloudiness and smell. Unfortunately, today its a tad smelly again and my mum has a constant backache and she only finished her antibiotics about a week ago!

She doesn't eat a very good diet, partly money and partly the fact that shes very stubborn and wants to do what she wants. She also still smokes and just doesn't listen to reason. I bought her some probiotics and she is going to make sure she can take them by asking her gp, but her gp did advice her to drink those awful probiotic drinks but they are rubbish and full of sugar.

They never test her urine after antibiotics, I don't think they see it as necessary, but that's what our health system is like, useless! I just don't know what to do.

best wishes sharon

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4 years 11 months ago #47369 by Cynthia
The mental issues are common in the elderly when they have a UTI believe it or not. Geriatric caregivers will often check for a bladder infection when they note a change in mental condition. You have asked if your Mom might be rejecting her diversion as it is not a transplant that is probably not the problem. I am not a doctor but I do have a diversion and a change in urine color is often caused by not getting enough liquids. Infection will also cause a change in color and smell to the urine, but so can lack of enough liquid and types food eaten. The infection can become a vicious cycle of the dehydration setting up the right conditions for infection. Making sure she gets enough liquid can be a big challenge but it is very important. Ask here doctor how much liquid she should get a day and be faithful everyday it could help. When they test her urine for infection have they done a culture to see exactly what type of bacteria they are treating? Are they retesting it when she finishes her antibiotic to make sure it is gone? Does your system offer patient advocates who might help you navigate the system? I am not sure any of this helps but I hope so as it sounds like you have a lot on your hands. Take care of your self!

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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4 years 11 months ago #47367 by sprog
Hi Sara Anne,

Thankyou for your reply, I really appreciate it.

All my mum has is her regular gp, who has no idea what to do with my mum and her urologist said he didn't need to see her again! My mums gp is going to refer my mum again to the urologist, but my mum has no one else, no social worker etc, just me;)

The nhs here in England is pretty appalling and all we have. I don't really know what to do, but will go to her appointment with her, when she gets one.

Do you know if its possible to get some kind of rejection and if anyone else has had these problems?

Thankyou for all your advice.

best wishes sharon

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4 years 11 months ago #47366 by sara.anne
So sorry to hear what your mother is going through!

I am really not at all familiar with the British medical system, so I can only tell you what I might advise here in the US. Obviously there is something seriously wrong that needs "fixing." Is is possible to call a meeting of ALL the medical personnel working with your mother? The urologist, internist, psychiatrist, social worker....should discuss what is happening and see if, with all the disciplines participating, a solution to the puzzle could be found. Since it appears to be "complicated" the cause may cross simple condition boundaries.

At least I would hope that a social worker might be available to help guide you through this puzzle.

Sending really good thoughts your way...

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 11 months ago #47363 by sprog
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

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