Is there anyone on here caring for someone, mid stage dementia, Crohns disease and a stoma ?

[maryjoan]

Hi again,

My partner seems to be experiencing a Crohn's flare up. It is a long time since he has had one and his dementia has progressed significantly since last time he was ill.
The pattern seems to be ( for him) shivering, feeling cold ( even though is is not cold) no appetite, and if he eats anything at all he is retching immediately, although, not at the moment being sick.
I have tried asking him how he feels, but he cannot tell me. He does not know what the Crohns is or does to him - so I am trying to assess him without having the full picture.

It was after a prolonged flare up that he ended up in hospital for 2 months, almost died, and had his colon removed...... so naturally I feel rather worried.

Anyone got any ideas, as I don't want to involve the medics unnecessarily as they are so busy and the moment and there are so many restrictions due to Covid.

 

[Just me]

That must be so worrying and I imagine you are trying to avoid a hospital admittance @maryjoan.

I guess all the people that can help are otherwise busy so though I have no experience, thought I’d bump your post up so it stays current.

??

 

[maryjoan]

That must be so worrying and I imagine you are trying to avoid a hospital admittance @maryjoan.

I guess all the people that can help are otherwise busy so though I have no experience, thought I’d bump your post up so it stays current.

??

thank you so much ! x

 

[Woo2]

I don’t have any experience either , I hope you get some good advice . Could you just call Gp for a chat and see what they say ? It is such a huge responsibility to be completely responsible for someone else’s health and welfare . Take care

 

[Bunty2410]

Hi
if he’s shivering feeling cold he could be brewing an infection, have you been able to take his temperature? I think you should seek medical advice

 

[Izzy]

I agree @maryjoan, I think you should seek medical advice.

 

[Nikkifrommars]

Hi @maryjoan as others have suggested it is certainly worth checking his temperature, and seeking medical advice. If he has a stoma there is a constant possible route to infection and such infections can spread rapidly and be very serious or even fatal. His GP or a doctor at A and E may be able to tell if he has further adhesions in his digestive tract/stomach or bowels and check for other signs of infection. A freind of mine has recently had to spend several months in and out of hospital having developed a further blockage and infection, further sections of bowel and intestine had to be removed, initial surgery does not prevent it coming back... my freind is only in his 40s and has had a colostomy bag for many years.

With luck it is just a crohns flare up.. hideous though that is especially for someone with no knowledge that they have the condition. I know people with it and have a family history of digestive disorders including crohns, ibs and colitis... all of which are painful and difficult to manage even when you know you have them! In my own case I have severe ibs and possibly it is something else but my gp will not refer for the neccessary tests in spite of our family history. So I understand that the cramps can and do cause shivering and sweating as the pain is so severe that it causes a mild autonomic reaction, but as he cannot tell you exactly how he is feeling with mid stage dementia, and as the pain levels may be comparable with a flare up or an adhesion or infection of the bowel/gi tract so it is best to use caution and get him checked over to be safe.

If having done so the doctor finds that it is just a flare up great news... then on to finding how to explain to him what is wrong. He wont remember or will forget regularly. I worked for a while in a dementia section of a nursing home. We had people who forgot when they needed to use their bowel or bladder or constantly felt they needed the toilet, those who were catheterised or had stomas and couldnt remember they had them or tried to pull them out etc.. none of this is easy for someone with dementia. Pain and sickness are also very hard on someone with dementia as they may feel they will never get better as this is their current reality. Focus on being reassuring and supportive but dont explain in too much detail or medicalise. Maybe say it is a return of an old illness from when he was too young to remember it? That certainly helped some of our residents when they were poorly. Also if it is you will need to try and help him monitor/modify his diet to help settle this. Although Crohns flare ups are not caused by specific foods certain things definitely make it worse and that can also vary from person to person.. and that getting someone with dementia to eat the appropriate foods that dont trigger symptoms may not be easy... I know fatty/fried foods and chocolate/dairy/bread etc if they are triggers may as well be crack cocaine for some people.. I have a freind who cannot eat pizza without severe illness who nonetheless has every few months and puts up with 2 days on the bathroom floor retching and with dioarhea.. if I had specific triggers I would avoid them.. but for my own flare ups which last weeks sometimes I get totally bored of the restricted diet I must then go on..

Anyway a bit rambling I know but I hope that it is still of some use to you.

Best of luck that it is just the crohns and that it settles down again very soon.

 

[maryjoan]

Hi @maryjoan as others have suggested it is certainly worth checking his temperature, and seeking medical advice. If he has a stoma there is a constant possible route to infection and such infections can spread rapidly and be very serious or even fatal. His GP or a doctor at A and E may be able to tell if he has further adhesions in his digestive tract/stomach or bowels and check for other signs of infection. A freind of mine has recently had to spend several months in and out of hospital having developed a further blockage and infection, further sections of bowel and intestine had to be removed, initial surgery does not prevent it coming back... my freind is only in his 40s and has had a colostomy bag for many years.

With luck it is just a crohns flare up.. hideous though that is especially for someone with no knowledge that they have the condition. I know people with it and have a family history of digestive disorders including crohns, ibs and colitis... all of which are painful and difficult to manage even when you know you have them! In my own case I have severe ibs and possibly it is something else but my gp will not refer for the neccessary tests in spite of our family history. So I understand that the cramps can and do cause shivering and sweating as the pain is so severe that it causes a mild autonomic reaction, but as he cannot tell you exactly how he is feeling with mid stage dementia, and as the pain levels may be comparable with a flare up or an adhesion or infection of the bowel/gi tract so it is best to use caution and get him checked over to be safe.

If having done so the doctor finds that it is just a flare up great news... then on to finding how to explain to him what is wrong. He wont remember or will forget regularly. I worked for a while in a dementia section of a nursing home. We had people who forgot when they needed to use their bowel or bladder or constantly felt they needed the toilet, those who were catheterised or had stomas and couldnt remember they had them or tried to pull them out etc.. none of this is easy for someone with dementia. Pain and sickness are also very hard on someone with dementia as they may feel they will never get better as this is their current reality. Focus on being reassuring and supportive but dont explain in too much detail or medicalise. Maybe say it is a return of an old illness from when he was too young to remember it? That certainly helped some of our residents when they were poorly. Also if it is you will need to try and help him monitor/modify his diet to help settle this. Although Crohns flare ups are not caused by specific foods certain things definitely make it worse and that can also vary from person to person.. and that getting someone with dementia to eat the appropriate foods that dont trigger symptoms may not be easy... I know fatty/fried foods and chocolate/dairy/bread etc if they are triggers may as well be crack cocaine for some people.. I have a freind who cannot eat pizza without severe illness who nonetheless has every few months and puts up with 2 days on the bathroom floor retching and with dioarhea.. if I had specific triggers I would avoid them.. but for my own flare ups which last weeks sometimes I get totally bored of the restricted diet I must then go on..

Anyway a bit rambling I know but I hope that it is still of some use to you.

Best of luck that it is just the crohns and that it settles down again very soon.

Thankyou @Nikkifrommars for all your time and trouble to write that message. Yes, I agree totally with you. His dementia was diagnosed just 3 weeks after he had his colon removed - so difficult times. He is still in bed this morning, and I am waiting for a telephone consultation with the Dr. I think this was triggered by him drinking more wine that usual. I had got him to just 1 glass in the evening, and now he is up to 3 glasses - I think that might be the trigger.
I feel I can almost cope until something like this happens, and then I feel utterly out of my depth...

we will see...

thanks again, so much, to you all

 

[Nikkifrommars]

Thankyou @Nikkifrommars for all your time and trouble to write that message. Yes, I agree totally with you. His dementia was diagnosed just 3 weeks after he had his colon removed - so difficult times. He is still in bed this morning, and I am waiting for a telephone consultation with the Dr. I think this was triggered by him drinking more wine that usual. I had got him to just 1 glass in the evening, and now he is up to 3 glasses - I think that might be the trigger.
I feel I can almost cope until something like this happens, and then I feel utterly out of my depth...

we will see...

thanks again, so much, to you all

Oh hun, is helpful if there is a trigger as can then be avoided in future. Hope for your sake and his that is the cause as can then be sorted.. may be worth trying some non/low alcoholic alternatives if he is wanting to drink so he still has the enjoyment but without the negative effects? Or it could be that tge particular wine is a trigger as well. . I know I cant drink red wine due to higher tannin and sulphides/sulphates.. some brands of wine also cause that as they are higher in it.. worth looking into perhaps? Anyway all the best.