Dementia and stoma care

[Amethyst59]

My late husband had a urostomy, following cancer...and then a colostomy following a complete bowel blockage when the cancer spread. What a horrible situation for you to be in. I am so sorry that the consultant has left you with feelings of guilt, for what is a very reasonable question...should you put your dad through this? It is such an emotive subject...life at all costs. I know where I stand on this...but this is not the time or place to discuss that. I just know what happens when the bowel blocks...I have seen this twice, in my late husband and, more recently and with a very different outcome, another family member. And if this happens, they will give you no choice anyway. I just wonder, will this definitely lead to a blockage? I don’t expect they can tell you...but they might be able to, depending on the location and grade of cancer. Another thing that you could do is contact Admiral Nurses, they have a national website, or telephone the help line on this site. They have maybe encountered just this situation before and might have some really constructive advice to give.
I am glad you found this site...I feel we have not been as helpful as we would dearly like to be,,,but this is not a situation with an easy answer, is it?

 

[SnowWhite]

I feel very strongly about this - and I hope my experiences can be of help to you.....

My partner was diagnosed with Crohn's disease Jan 2016 - but had good health for all of that year apart from us suspecting he had memory issues. An appt was made regarding this but was some months away when last Christmas his physical health took a major downturn.

He was admitted to hospital on 29th Dec and did not come home until 5th Feb - and when I got him home he was a different person.

The hospital tried for 3 weeks to cure him, without success, and it was a dying man they took to surgery for a colonoscopy. We were told he would have a 'bag', and that was the end of that. They knew he had memory problems, but did not tell us that this major illness could affect that.

Six hours anesthetic on top of weeks of fever and ill health, and BANG! Not only did he come home with a bag, he came home with major symptoms of mixed dementia which has now been diagnosed. Our lives have been devastated.

Why? Well, no one explains what a pain it is trying to manage a bag with someone who has dementia. it seems it can be reasonable if the bag has been in place for years before the dementia strikes, but as two 'new' issues life takes on a nightmare quality.

My partner never learnt to manage the bag - he was discharged from hospital and the first night we ended up with the contents of the bag all over him, all over the sitting room, all over the bathroom, the bed - you name it and s**t was there! At almost midnight we had 2 district nurses here trying to sort us out.

Almost a year later - the bag won't stick no matter what we do - the dementia causes him to scratch at it ( common, it seems) and our lives revolve around this bloody bag. The quality of his life is so reduced, and his anguish is palpable. He now spends all day just sat in front of the TV with little interest in anything. We talk about levels of 'fed up ness' and it is usually over 100%.

So, I am aware that surgeons etc do not really ' know' their patients, and often do not explain things fully, because they have no way of knowing whether we will understand the complexities of what they are explaining - that is totally understandable. BUT you need to ask the surgeon/consultant whoever, what the effect of this very major operation will or could be on his dementia - and then start to weigh things up. My partner has been in hospital 4 times this year since the operation - mostly connected with issues from the'bag' - but each time he becomes unwell, feverish, etc the dementia gets worse - vascular dementia especially, does that.

So, my advise to you ..... is be aware there are implications to this operation in respect of the dementia, that having a bag is not simple and straight forward, it can be a total utter nightmare to manage, especially with someone with dementia. You need to speak to the team of stoma care nurses at the hospital. You need to see if you an have carers coming in to deal with the bag for you - we have managed this after almost a year. Because love my partner as I do, I find the stoma itself a revolting thing to deal with. You have this person you love and respect, you try to change the bag for them and there is s**t shooting out of the thing as you do it!! Not pleasant. If I can be of any further help, please pm me.......

Oh Maryjoan, you and your OH have my complete sympathy. It must be a nightmare for you both. Don't you find the contents smell much more than the normal "business" too? It's an awful smell. I visited Mum the other day and she had just had help to change her bag and the room was very smelly. She has special little air fresheners to use but forgets to do so so I had a good spray around.

It's bad enough for a person to get used to having a bag when you are otherwise quite able so it must be doubly hard for you both. Are you getting support from the stoma nurses?

I had to call out a stoma nurse at the home we removed Mum from as she was having problems. She was lovely and explained things to Mum and said the bags were the wrong shape and reordered for her. She also recommended some spray to remove them without damaging the skin.

That home was absolutely clueless and couldn't help Mum at all and the stoma nurse rang me and said that in all her years of doing this job she had never met such defensive people. They refused her offer of some free training for staff and just tossed aside leaflets she gave them. Horrible place that was!

I don't know what else to advise you but do stay in touch with the stoma nurses and don't be afraid to ask for more help as that's what their job is. Xx

 

[maryjoan]

Oh Maryjoan, you and your OH have my complete sympathy. It must be a nightmare for you both. Don't you find the contents smell much more than the normal "business" too? It's an awful smell. I visited Mum the other day and she had just had help to change her bag and the room was very smelly. She has special little air fresheners to use but forgets to do so so I had a good spray around.

It's bad enough for a person to get used to having a bag when you are otherwise quite able so it must be doubly hard for you both. Are you getting support from the stoma nurses?

I had to call out a stoma nurse at the home we removed Mum from as she was having problems. She was lovely and explained things to Mum and said the bags were the wrong shape and reordered for her. She also recommended some spray to remove them without damaging the skin.

That home was absolutely clueless and couldn't help Mum at all and the stoma nurse rang me and said that in all her years of doing this job she had never met such defensive people. They refused her offer of some free training for staff and just tossed aside leaflets she gave them. Horrible place that was!

I don't know what else to advise you but do stay in touch with the stoma nurses and don't be afraid to ask for more help as that's what their job is. Xx

Thank you for this, my dear - yes, life is a nightmare, but I am determined to get on top of it. My hardest thing is getting my head around the fact that this happened so quickly, and I look at the poor ould fella and he is not him anymore. We have only been together for 7 years, so not got a lifetime of memories like so many other people. I still try to talk to him as though he was as he was, and then am crushed when I realise I am really talking to myself.

My work is keeping me (fairly) sane, but it is so hard to concentrate on the intrigues of doing a clients family history when the interruptions are constant.

Yes, the smell is appalling. I have diffusers and candles as sprays make me sneeze. He has a poor sense of smell - lucky thing!!!

His children cannot help as they are 200 miles away - mine do their best, but its not as though the poor ould fella is their father...... It has taken me all year, but I now have carers 7 mornings a week coming in to change the bag - and that has enhanced my life considerably......

Because we cannot self fund care, all the official bods keep repeating that the poor ould fella will have to stay here with me for as long as is humanly possible, then, like you, it is finding a home that can deal with dementia and the dreaded stoma.....

Oh, well, I will just toddle off, make him his coffee and biscuits and then delve back into the past...

do keep in touch xx

 

[Lovemydadbut]

I feel very strongly about this - and I hope my experiences can be of help to you.....

My partner was diagnosed with Crohn's disease Jan 2016 - but had good health for all of that year apart from us suspecting he had memory issues. An appt was made regarding this but was some months away when last Christmas his physical health took a major downturn.

He was admitted to hospital on 29th Dec and did not come home until 5th Feb - and when I got him home he was a different person.

The hospital tried for 3 weeks to cure him, without success, and it was a dying man they took to surgery for a colonoscopy. We were told he would have a 'bag', and that was the end of that. They knew he had memory problems, but did not tell us that this major illness could affect that.

Six hours anesthetic on top of weeks of fever and ill health, and BANG! Not only did he come home with a bag, he came home with major symptoms of mixed dementia which has now been diagnosed. Our lives have been devastated.

Why? Well, no one explains what a pain it is trying to manage a bag with someone who has dementia. it seems it can be reasonable if the bag has been in place for years before the dementia strikes, but as two 'new' issues life takes on a nightmare quality.

My partner never learnt to manage the bag - he was discharged from hospital and the first night we ended up with the contents of the bag all over him, all over the sitting room, all over the bathroom, the bed - you name it and s**t was there! At almost midnight we had 2 district nurses here trying to sort us out.

Almost a year later - the bag won't stick no matter what we do - the dementia causes him to scratch at it ( common, it seems) and our lives revolve around this bloody bag. The quality of his life is so reduced, and his anguish is palpable. He now spends all day just sat in front of the TV with little interest in anything. We talk about levels of 'fed up ness' and it is usually over 100%.

So, I am aware that surgeons etc do not really ' know' their patients, and often do not explain things fully, because they have no way of knowing whether we will understand the complexities of what they are explaining - that is totally understandable. BUT you need to ask the surgeon/consultant whoever, what the effect of this very major operation will or could be on his dementia - and then start to weigh things up. My partner has been in hospital 4 times this year since the operation - mostly connected with issues from the'bag' - but each time he becomes unwell, feverish, etc the dementia gets worse - vascular dementia especially, does that.

So, my advise to you ..... is be aware there are implications to this operation in respect of the dementia, that having a bag is not simple and straight forward, it can be a total utter nightmare to manage, especially with someone with dementia. You need to speak to the team of stoma care nurses at the hospital. You need to see if you an have carers coming in to deal with the bag for you - we have managed this after almost a year. Because love my partner as I do, I find the stoma itself a revolting thing to deal with. You have this person you love and respect, you try to change the bag for them and there is s**t shooting out of the thing as you do it!! Not pleasant. If I can be of any further help, please pm me.......

Thank you so much for this. Its given us alot of comfort that there are others who can empathasize with our concerns....We've actually raised a lot of thd issues which you have faced but the doctors all seem quite focused on the surgery.... seem quite dismissive about the impact the surgery and bag may have on his emotional and mental state which is why have I have been searching for people have gone through this....so thank you for the honesty....it's given us some peace of mind regardless what our decisions maybe....

 

[Lovemydadbut]

My late husband had a urostomy, following cancer...and then a colostomy following a complete bowel blockage when the cancer spread. What a horrible situation for you to be in. I am so sorry that the consultant has left you with feelings of guilt, for what is a very reasonable question...should you put your dad through this? It is such an emotive subject...life at all costs. I know where I stand on this...but this is not the time or place to discuss that. I just know what happens when the bowel blocks...I have seen this twice, in my late husband and, more recently and with a very different outcome, another family member. And if this happens, they will give you no choice anyway. I just wonder, will this definitely lead to a blockage? I don’t expect they can tell you...but they might be able to, depending on the location and grade of cancer. Another thing that you could do is contact Admiral Nurses, they have a national website, or telephone the help line on this site. They have maybe encountered just this situation before and might have some really constructive advice to give.
I am glad you found this site...I feel we have not been as helpful as we would dearly like to be,,,but this is not a situation with an easy answer, is it?

The feedback and experiences you've shared have been helpful. Do you mind sharing what happens with there is complete blockage. All we are told is it's a trip to the emergency resulting in an ostomy bag (which we've come to accept)...I know ideally having a scheduled surgery would be preferred however I don't want to put my dad through a surgery unless absolutely necessary based on his current condition....if the end result is an ostomy anyways we'd prefer to let him enjoy life a little longer...

 

[Amethyst59]

What a horrible situation for you all to be in. I will send you a private message, but it will have to be later today, as we have an early appointment this morning. I won’t forget.

 

[Amethyst59]

The feedback and experiences you've shared have been helpful. Do you mind sharing what happens with there is complete blockage. All we are told is it's a trip to the emergency resulting in an ostomy bag (which we've come to accept)...I know ideally having a scheduled surgery would be preferred however I don't want to put my dad through a surgery unless absolutely necessary based on his current condition....if the end result is an ostomy anyways we'd prefer to let him enjoy life a little longer...

Just discussed this with my daughter...and I will PM you, if you are absolutely sure that is what you want. I have to go out now, but i will check TP when we get home.

 

[Amethyst59]

The feedback and experiences you've shared have been helpful. Do you mind sharing what happens with there is complete blockage. All we are told is it's a trip to the emergency resulting in an ostomy bag (which we've come to accept)...I know ideally having a scheduled surgery would be preferred however I don't want to put my dad through a surgery unless absolutely necessary based on his current condition....if the end result is an ostomy anyways we'd prefer to let him enjoy life a little longer...

I have sent a private message, but it is upsetting and you may prefer not to read it. If that is the case, then no worries.