Check ups??

[maryjoan]

OH has vascular/mixed dementia and there is nothing for it but to get on with things - which I do with your help!

He also has Crohn's disease which he dismisses and does not understand.

He was diagnosed with it in Jan 2016 ( dementia just making itself known)
He was dying by Jan 2017 and had emergency surgery which advanced his dementia but saved his life.
He now has a stoma and bag which he does not understand or deal with properly.

So, a carer comes in every day to change the bag for him.

We are now at the stage where carers are training other carers, and like Chinese whispers, the procedure is not carried out as thoroughly as it should be, by way of monitoring his health. He would not know himself if there was anything wrong.

What should I do?

I know the dementia is, in the end, life limiting, and all my time is taken up with managing his life around it.

But it has occured to me that the Crohn's almost took his life, and he still has it.

My question is.... ( sorry for long post)

Should he not have some sort of regular check ups for the Crohn's as he doesn't know what it is all about, and I am not that sure either what to look out for???

As it is, he sees no one ever for anything.

 

[Olliebeak]

OH has vascular/mixed dementia and there is nothing for it but to get on with things - which I do with your help!

He also has Crohn's disease which he dismisses and does not understand.

He was diagnosed with it in Jan 2016 ( dementia just making itself known)
He was dying by Jan 2017 and had emergency surgery which advanced his dementia but saved his life.
He now has a stoma and bag which he does not understand or deal with properly.

So, a carer comes in every day to change the bag for him.

We are now at the stage where carers are training other carers, and like Chinese whispers, the procedure is not carried out as thoroughly as it should be, by way of monitoring his health. He would not know himself if there was anything wrong.

What should I do?

I know the dementia is, in the end, life limiting, and all my time is taken up with managing his life around it.

But it has occured to me that the Crohn's almost took his life, and he still has it.

My question is.... ( sorry for long post)

Should he not have some sort of regular check ups for the Crohn's as he doesn't know what it is all about, and I am not that sure either what to look out for???

As it is, he sees no one ever for anything.

I would say it’s your GP’s responsibility to review him even if it’s delegated to a practice nurse. In our practice anyone with a long term condition is asked to make an appointment annually, in the month of their birthday - in my OH’s case its to check his diabetes (nurse) and his dementia (GP), but also to review his medication (also GP) including management of diverticular disease

 

[Sirena]

He should have a specialist at the hospital he sees from time to time to monitor him. This doesn't always happen reliably. My friend's husband has had Crohns for decades and was without regular monitoring for years - they just let him get on with it. Last year he wanted his medication reviewed so asked his GP to refer him back to the department and he now has a named consultant to see. Worth asking the GP for how this should be best handled.

 

[Shedrech]

the NHS website has this
https://www.nhs.uk/conditions/crohns-disease/

and suggests looking at this
https://www.crohnsandcolitis.org.uk/