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Dementia and an ileostomy.

Tillybuc01

Registered User
Mar 14, 2018
35
Greater Manchester
Has anybody on here had experience of a family member who has had an ileostomy and following the operation has shown signs of the onset of dementia? My husband underwent an emergency operation on the 20th January and came home last week after 7 weeks in hospital. Whilst in hospital his sodium levels dropped to below 117 which is apparently dangerous, and he was very confused. Unfortunately, even though they managed to get his sodium normalised, his confusion remained. He thought I had put him in prison, he had no idea where he was or what he had done and grew very agitated at night when I was leaving and had to be distracted by the nurses. He also had no idea he had a stoma- never mind that his bag might need emptying or changing.

He had shown signs of forgetfulness before the operation, but nowhere near the extent of confusion he was displaying. In hospital his stoma bag was bursting/leaking on a regular basis and I was having to wash 1 or 2 sets of soiled clothes a day! One nurse said this was normal to have so many “mishaps”!

Things were so bad that the day before he came home they were talking about long term care. You can imagine my trepidation , nay fear, of him coming home. I had visions of his bag bursting/leaking every night, changing bed linen at all hours and nights of disturbed sleep. Then there was the confusion to deal with as well as the cancer treatment in the future. He was oblivious to it all! However there was no way I would consider long term care at this point.

He has been home a week now and I have some sort of a routine. His delerium has almost disappeared; he now knows where he is and sometimes understands when I say we must empty his bag- but he does not initiate this homself. We have had “mishaps” but have coped- just. I am learning to laugh when he says daft things, which does help although it is not always easy. Even going out for a short drive I find requires great planning. Conversation, spontaneous activities and normality are becoming a thing of the past- the man I married over 40 years ago is beginning to disappear.

I know I need to do things for myself, if anyone else tells me that I might go mad, it is facilitating that which is the difficulty.

It would be great to chat to anybody who is in the same situation- perhaps exchange ideas that have worked for them. Happy days!
 

margherita

Registered User
May 30, 2017
2,561
Italy, Milan and Acqui Terme
Hi @Tillybuc01 ,
having surgery and having to stay in hospital for a long time often make dementia worse.
You describe your husband's symptoms, but I can't understand if he was diagnosed with dementia.
I think he should have a diagnosis, the first step to get the support which I am afraid you will need sooner or later.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,788
Kent
Hello @Tillybuc01

If your husband had undiagnosed dementia , such major surgery and the general anaesthetic would have had a big impact .

Dementia is known to be present possibly years before diagnosis and if you say your husband was showing signs of forgetfulness before the surgery it may be the case.

Please see your GP about your husband. Discuss your fears and the GP will advise where you go from here.
 

Soobee

Registered User
Aug 22, 2009
2,733
South
Get his vitamin B12 levels checked if it isn't already happening. If he has had part of the bowel removed then the absorption of nutrients may be affected, including calcium, iron and B12. It's really common in people who have stomas and inflammatory bowel diseases like Crohns.

A lack of B12 produces symptoms very similar to dementia, i.e. forgetfulness, confusion.
 

rhubarbtree

Registered User
Jan 7, 2015
494
North West
Has anybody on here had experience of a family member who has had an ileostomy and following the operation has shown signs of the onset of dementia? My husband underwent an emergency operation on the 20th January and came home last week after 7 weeks in hospital. Whilst in hospital his sodium levels dropped to below 117 which is apparently dangerous, and he was very confused. Unfortunately, even though they managed to get his sodium normalised, his confusion remained. He thought I had put him in prison, he had no idea where he was or what he had done and grew very agitated at night when I was leaving and had to be distracted by the nurses. He also had no idea he had a stoma- never mind that his bag might need emptying or changing.

He had shown signs of forgetfulness before the operation, but nowhere near the extent of confusion he was displaying. In hospital his stoma bag was bursting/leaking on a regular basis and I was having to wash 1 or 2 sets of soiled clothes a day! One nurse said this was normal to have so many “mishaps”!

Things were so bad that the day before he came home they were talking about long term care. You can imagine my trepidation , nay fear, of him coming home. I had visions of his bag bursting/leaking every night, changing bed linen at all hours and nights of disturbed sleep. Then there was the confusion to deal with as well as the cancer treatment in the future. He was oblivious to it all! However there was no way I would consider long term care at this point.

He has been home a week now and I have some sort of a routine. His delerium has almost disappeared; he now knows where he is and sometimes understands when I say we must empty his bag- but he does not initiate this homself. We have had “mishaps” but have coped- just. I am learning to laugh when he says daft things, which does help although it is not always easy. Even going out for a short drive I find requires great planning. Conversation, spontaneous activities and normality are becoming a thing of the past- the man I married over 40 years ago is beginning to disappear.

I know I need to do things for myself, if anyone else tells me that I might go mad, it is facilitating that which is the difficulty.

It would be great to chat to anybody who is in the same situation- perhaps exchange ideas that have worked for them. Happy days!
Hi Tilly, Sorry to hear about your husband's operation. I had the same operation and spent 7 weeks in hospital. I had what I later found out was ICU psychosis (caused by disturbed sleep, lights constantly on etc.) Unbelievable hallucinations. I agree with the nurse the first few weeks with a bag are very difficult and messy. Hospital did not check my B12 until six months later when my hair was thinning. I now have B12 injection every quarter. Would try to get this checked asap. I found the stoma nurses gave the best advice on all things.

Coming home was the best aid to my recovery although I had to use a wheelchair for a while and my mobility around the house was compromised. (From the weeks being immobile in bed). I did make a full recovery even going on to have a reversal.

I hope you can gather the strength of mind and body to help your husband for a while longer and that he can regain his understanding. It is a massive operation and will take a while to get over. Also I presume you will have control over his diet and will be able to work out what agrees with his new digestive system and what does not!
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
Has anybody on here had experience of a family member who has had an ileostomy and following the operation has shown signs of the onset of dementia? My husband underwent an emergency operation on the 20th January and came home last week after 7 weeks in hospital. Whilst in hospital his sodium levels dropped to below 117 which is apparently dangerous, and he was very confused. Unfortunately, even though they managed to get his sodium normalised, his confusion remained. He thought I had put him in prison, he had no idea where he was or what he had done and grew very agitated at night when I was leaving and had to be distracted by the nurses. He also had no idea he had a stoma- never mind that his bag might need emptying or changing.

He had shown signs of forgetfulness before the operation, but nowhere near the extent of confusion he was displaying. In hospital his stoma bag was bursting/leaking on a regular basis and I was having to wash 1 or 2 sets of soiled clothes a day! One nurse said this was normal to have so many “mishaps”!

Things were so bad that the day before he came home they were talking about long term care. You can imagine my trepidation , nay fear, of him coming home. I had visions of his bag bursting/leaking every night, changing bed linen at all hours and nights of disturbed sleep. Then there was the confusion to deal with as well as the cancer treatment in the future. He was oblivious to it all! However there was no way I would consider long term care at this point.

He has been home a week now and I have some sort of a routine. His delerium has almost disappeared; he now knows where he is and sometimes understands when I say we must empty his bag- but he does not initiate this homself. We have had “mishaps” but have coped- just. I am learning to laugh when he says daft things, which does help although it is not always easy. Even going out for a short drive I find requires great planning. Conversation, spontaneous activities and normality are becoming a thing of the past- the man I married over 40 years ago is beginning to disappear.

I know I need to do things for myself, if anyone else tells me that I might go mad, it is facilitating that which is the difficulty.

It would be great to chat to anybody who is in the same situation- perhaps exchange ideas that have worked for them. Happy days!
I really did think I had written this post.... we had the most horrendous mishaps with THE BAG - this was jan 2017 - the dementia is daily worse - the only difference between us that I can see is that I am not married to my partner and have only known him 7 years....... do keep in touch if you want to chat or sound off at all......
 

Tillybuc01

Registered User
Mar 14, 2018
35
Greater Manchester
Hi
Thank you for your comments, I much appreciate it. It does appear that he possibly dementia was present and the trauma and operation have kicked started it. The change him in is incredible- his forgetfulness has increased to lack of cognitive understanding. ☹ Sorry I did not make it clear-. Before the emergency operation he had just seen the GP and was booked in for blood tests but we could not go as he was rushed into hospital. Whilst there, the mental health doctor did see him and he was given the MMSE test and scored 20/30. The memory team are coming on Friday to assess him.

I am particularly interested in sharing experiences/ ideas with others who may be in a similar situation - having an OH with an ileostomy which has to be managed by the carer. How do they managed the situation practically- what has worked for them- or indeed what has not worked.

Thanks again
 

Tillybuc01

Registered User
Mar 14, 2018
35
Greater Manchester
I really did think I had written this post.... we had the most horrendous mishaps with THE BAG - this was jan 2017 - the dementia is daily worse - the only difference between us that I can see is that I am not married to my partner and have only known him 7 years....... do keep in touch if you want to chat or sound off at all......
Hi our two situations do se very similar. How does your OH cope THE BAG?