Follow
Share

Lucy was MS diagnosed in 2004. This began with muscular spasms but they subsided in 2007. She was consistently stable until 2015 - with the exception of occasional periods of 'forgetfulness' and having to use a four-wheeled walker.


She was/is always extremely social, happy/smiling, and conversational.


Then she suddenly began projectile vomiting fresh blood and fecal liquid for three months, fecal and infrequent episodes of brown foul smelling discharge in her urine (smelt like feces).


Each time she was blue-lighted to hospital she was discharged with no in-depth investigations because she 'brightened up and presented as 'ok now'. (A bit like when your child is very unwell but perfectly ok when you get to the doctor surgery).


Literally every time this happened it coincided with dramatic changes.... She would alternate several times a day from her 'normal' physical and mental behavior to:


Temporary confusion, staring spells, jerking movements, 'stiffening' of the arms and legs, periodically refusing to eat/drink and constipation.


Oral antibiotics were prescribed, thrown left and right at her.


They did reduce the mental, physical and cognitive changes, but each time the antibiotic course finished, infection returned with a vengeance and she began to have seizures which escalated into strokes and heart attacks.


(At one stage there were nine different types within five weeks).


GP's, hospital staff and community nurses have (and do) witnessed feces from the vagina on frequent occasions but often did not even escalate what they had seen. Then quite large kidney stones began to pass in her urine too.


No treatment for this as the GP said 'they would dissolve'.


There were no proper investigations until 2018 when she saw a colorectal surgeon, who sent her for CT scan but a fistula was not confirmed.


And so it continues.


Community district nurses were sent to perform bowel irrigation - which did ease it a little - But then a new district nurse raised concerns that the irrigation bag and tubing had not been changed/replaced for over seven months


Senior DN's became what can only be described as maliciously hostile and refused to continue with the irrigation.


They used "She cannot mentally or physically tolerate the procedure" as an excuse.


They then recommended a DNACPR.


Other 'professionals' believed their lies.


The husband went 'public' and NHS legal department and County Council authorities were so embarrassed they colluded to bring a court of protection case in a devious attempt to have the husbands Power of Attorney revoked.


They failed.


But more hostility from all concerned, so all of the above continues, resulting in many more hospital emergency admissions.


Now 2023 - She has had multiple strokes, heart attacks and even a cardiac arrest. Only when it gets to this stage will medics give IV antibiotics. She recovers extremely well and back to her 'baseline' - albeit with a little less cognitive function each time.


Many times they have issued covert DNACPR's, basing their judgmental 'opinions' DURING periods of severe infection, on her quality of life being "very poor because she has MS".


They refuse to acknowledge videos of how bright, bubbly and physically stronger she is when no infection is present.


It's not the MS that lowers her 'quality of life' - It's the many times medics disregard septic infections.


(Faecaluria is the medical term for the presence of fecal particles in the urine as a result of passing feces through the urethra when urinating.


It's a rarely seen and is almost always associated with a fistula between the rectum and urethra or colon and ureter but often misdiagnosed as urinary tract infections).


It has resulted on no less than thirty-six occasions in a life threatening septic infection.


She's had kidney stones for at least the past 5 years, passing them the size of a very large tablet. She now has a nephrostomy and waiting for an operation to remove the stones.

This question has been closed for answers. Ask a New Question.
Do you have an actual question?

In order to comment on the DNR order, it helps to know what country this is occurring in.

Is someone her DPoA or legal guardian? Did she create a Advanced Healthcare Directive at some point (maybe after her MS diagnosis)? This could be driving the DNR.

Does she have all her mental capacity? If so, maybe she's the one that wants the DNR? She gets to decide.

Also, how old is she?
Helpful Answer (0)
Report

Are you just trying to bring this problem to our attn or you have a question? If a question, I don't see where we can help. We r lay people. Seems the doctors are trying their best but seems this is very rare. Did Lucy have a colonoscopy where the lining was perforated?

So sorry what Lucy has been going thru.
Helpful Answer (0)
Report

Maybe you should call in a pelvic floor specialist as a consult. Start looking for urologists who specialize in treatment of the whole pelvic area. They have specialized training.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter