mum keeps removing ileostomy bag

[justjen]

Hello. I'm hoping maybe someone can help me. My mum has dementia and also an Ileostomy bag. She now keeps taking it off in between care visits resulting in stained underwear, clothes, carpet etc. Also she tries to flush them down the toilet causing blocked toilet and drains which my husband has had to buy rods to clear. The toilet has also overflowed into the kitchen below through the light fitting twice now! I've tried leaving notes stuck to the wall above the toilet but this hasn't helped.

Does anyone have any ideas on how to stop her removing the bags in the first place? PLEEEEEEASE?

 

[susy]

Hello. I'm hoping maybe someone can help me. My mum has dementia and also an Ileostomy bag. She now keeps taking it off in between care visits resulting in stained underwear, clothes, carpet etc. Also she tries to flush them down the toilet causing blocked toilet and drains which my husband has had to buy rods to clear. The toilet has also overflowed into the kitchen below through the light fitting twice now! I've tried leaving notes stuck to the wall above the toilet but this hasn't helped.

Does anyone have any ideas on how to stop her removing the bags in the first place? PLEEEEEEASE?

Im really sorry but I have no ideas to help. Distraction would be what I would suggest but Im guessing she is doing this when on her own so that isn't going to help. Hopefully someone might have a bright idea and be along soon.

 

[jenniferpa]

I'm wondering if you might not have to go as far as clothing sold for inappropriate undressing (that is, all fasteners are on the back, and hard to reach). Mind you, depending on her dexterity, some people have had success putting people who consistently remove incontinence pads into bathing costumes or leotards under their clothes.

I don't think you're going to persuade her not to do it, and I doubt notes will help either: she just won't remember.

 

[justjen]

Im really sorry but I have no ideas to help. Distraction would be what I would suggest but Im guessing she is doing this when on her own so that isn't going to help. Hopefully someone might have a bright idea and be along soon.

Thank you for replying

 

[justjen]

I'm wondering if you might not have to go as far as clothing sold for inappropriate undressing (that is, all fasteners are on the back, and hard to reach). Mind you, depending on her dexterity, some people have had success putting people who consistently remove incontinence pads into bathing costumes or leotards under their clothes.

I don't think you're going to persuade her not to do it, and I doubt notes will help either: she just won't remember.

Thank you

 

[jenniferpa]

The other thing I thought of is to have the whole thing checked out by either your district nurse of the specialist stoma nurse if there is one in her area - it might be causing her discomfort or even pain, hence her desire to rid herself of it. My understanding (limited) that there are a variety of different bags, and what suited her before may not suit her now.

 

[Jessbow]

Does she do it when she's in the loo, or do carers come on a fairly regular basis to attend to it? Difficult if she toilets herself.

What about an all in one 'body' I think they were called. Like a baby vest but for grown ups.With high rise knickers underneath.

 

[justjen]

The other thing I thought of is to have the whole thing checked out by either your district nurse of the specialist stoma nurse if there is one in her area - it might be causing her discomfort or even pain, hence her desire to rid herself of it. My understanding (limited) that there are a variety of different bags, and what suited her before may not suit her now.

Thank you. I've contacted the stoma nurse and she doesn't have an answer either. She sent me a brochure with stretchy support belt things in but I think she would take this off as well. When she had a fall and badly cut her elbow she kept taking the bandage and dressing off!

 

[justjen]

Does she do it when she's in the loo, or do carers come on a fairly regular basis to attend to it? Difficult if she toilets herself.

What about an all in one 'body' I think they were called. Like a baby vest but for grown ups.With high rise knickers underneath.

She seems to be doing it in the toilet during the day and in her bedroom at night where she has a commode. Carers come in 3 times a day for mum and dad. Dad is unable to walk at all and is confined to bed until hoisted into his chair so he's unable to help now. I'm worried about restricting her clothing too much as she needs to visit loo alone and might panic if she can't get her underwear off

 

[gringo]

Welcome to TP. justjen. My experience will not, I fear, bring you much comfort. Dementia and a stoma, in combination, are, I believe, as bad as it gets. I am very sorry to say that, in my view, you cannot stop somebody, with these conditions, from removing the bag. The only way I have found to deal with it, is by constant checking. Quite often, naturally enough, this is resisted and the cause of much aggression and agitation. So, by trial and error, one has to try and find a way of doing it with the minimum of fuss. As with most things in the dementia world, what works today won’t work tomorrow. Keeps you on your toes! To minimise the inevitable ‘accidents’, I found pull-ups to be a great help. It’s a rotten problem as I well know. It’s distressing for the sufferer as well, they don’t understand what the bag is and it’s only natural, I suppose, to try and clear things up. The bags end up all over the place, sometimes out of the window, down the loo, in the sock draw. Some disposals only come to light when the smell leads one by the nose.
The strain of all this is considerable because it’s a 24/7 job and there’s never a let up. Being no spring chicken, it brought me to my knees and I’m ashamed to say I finally had to admit defeat and move my wife into a Care Home.
Visiting daily I find I can deal with it quite happily through the day because I know I will not be faced with it during the night as well.

 

[justjen]

Welcome to TP. justjen. My experience will not, I fear, bring you much comfort. Dementia and a stoma, in combination, are, I believe, as bad as it gets. I am very sorry to say that, in my view, you cannot stop somebody, with these conditions, from removing the bag. The only way I have found to deal with it, is by constant checking. Quite often, naturally enough, this is resisted and the cause of much aggression and agitation. So, by trial and error, one has to try and find a way of doing it with the minimum of fuss. As with most things in the dementia world, what works today won’t work tomorrow. Keeps you on your toes! To minimise the inevitable ‘accidents’, I found pull-ups to be a great help. It’s a rotten problem as I well know. It’s distressing for the sufferer as well, they don’t understand what the bag is and it’s only natural, I suppose, to try and clear things up. The bags end up all over the place, sometimes out of the window, down the loo, in the sock draw. Some disposals only come to light when the smell leads one by the nose.
The strain of all this is considerable because it’s a 24/7 job and there’s never a let up. Being no spring chicken, it brought me to my knees and I’m ashamed to say I finally had to admit defeat and move my wife into a Care Home.
Visiting daily I find I can deal with it quite happily through the day because I know I will not be faced with it during the night as well.

Thank you for sharing your experience. Although I live next door I can't be there constantly for her as I also work. Hopefully I'm meeting with the social worker soon to discuss more hours from carers. My husband has also suggested somehow disabling the flush on the toilet so at least she won't be able to flood the bathroom and kitchen and blowing the electrics!

 

[Oak123]

I am experiencing the same thing

Hi. My Dad has an ileostomy and we are struggling with him pulling it off or not letting anyone change or empty it. It is really distressing. I came here looking to see if anyone had any bright ideas. But just wanted to share. To say you're nit in your own. All the care professionals I am dealing with have never had to deal with a stoma patient with dementia. He is worse first thing in the morning. So it was suggested he had his main meal during the day and not in the evening so there is minimal activity overnight to mitigate any issues in the morning. Regularly changing or emptying helps if he let's someone. Carers come in the times a day to help. Or at least try. I'm not sure what the next step is yet. If anyone comes up with a good idea, I'll share.

 

[Clive T]

Hi Oak123. I share your pain. Bit of history; mum had a colostomy around twenty-five years ago, and an ileostomy a couple of years later. She coped amazingly - you would never have known she'd ever had anything wrong with her. Christmas Eve 2014 the part of her brain that had been dealing with it so well decided to stop working...you can imagine the horror. We were completely unprepared. That Christmas was different, to say the least.

We found the same that you did; almost no medical professionals had come across patients with both Alzheimer's and a stoma. I was astonished when our (very good, experienced) GP said he didn't know of another person in the county. People simply didn't live as long after surgery once, I suppose.

Mum goes through phases. She will suddenly start taking the damn thing off and sticking a bit of loo paper on her stoma. It can be difficult to be civil at three in the morning when you're woken up and presented with the evidence. She'll get into a sort of pattern of doing it regularly for a week or so then it all calms down again. I never really came up with a way of stopping it, other than repeating as calmly and as gently as I could that she must never take it off.

The stoma nurses at the hospital were really very good and mum liked one of them in particular. I took a photo of her and mum together and stuck up copies in the bathroom and her bedroom, with "Mother! Remember what the nurse said! Never take your bag off, you blithering idiot! Love Yer! X" printed in great big letters. It worked for a while, but I don't think she understands it now.

This evening I found that she'd opened the flaps at the bottom and not done them up. Pooh everywhere. I've started to think of the twenty-minute quickwash on our machine as the "Mum's Been Messing With Her Bag" setting.

One other thing I've just thought of, the stoma nurse gave us some semi-circular, plasticky stretchable adhesive strips which you stick around the outside of the bag, where it sticks to the skin. I think they're known as elastic tapes and they're sort of C-shaped. You stick one around each half of the bag, covering both the skin and the edge of the bag. Belt and braces sort of affair, even I found them quite hard to get off, so you might want to ask about them. Downside was that we seemed to have more leaks when they were fitted, though they may have coincided with a dodgy batch of bags.

I take it you know the Jelly Baby trick? Changed my life.

 

[fizzie]

http://www.healthcentral.com/alzheimers/c/question/259855/155455/
there are some other threads on websites if you google dementia and stoma care or colostomy bag or stoma bag

 

[forumvisit]

Hi Oak123. I share your pain. Bit of history; mum had a colostomy around twenty-five years ago, and an ileostomy a couple of years later. She coped amazingly - you would never have known she'd ever had anything wrong with her. Christmas Eve 2014 the part of her brain that had been dealing with it so well decided to stop working...you can imagine the horror. We were completely unprepared. That Christmas was different, to say the least.

We found the same that you did; almost no medical professionals had come across patients with both Alzheimer's and a stoma. I was astonished when our (very good, experienced) GP said he didn't know of another person in the county. People simply didn't live as long after surgery once, I suppose.

Mum goes through phases. She will suddenly start taking the damn thing off and sticking a bit of loo paper on her stoma. It can be difficult to be civil at three in the morning when you're woken up and presented with the evidence. She'll get into a sort of pattern of doing it regularly for a week or so then it all calms down again. I never really came up with a way of stopping it, other than repeating as calmly and as gently as I could that she must never take it off.

The stoma nurses at the hospital were really very good and mum liked one of them in particular. I took a photo of her and mum together and stuck up copies in the bathroom and her bedroom, with "Mother! Remember what the nurse said! Never take your bag off, you blithering idiot! Love Yer! X" printed in great big letters. It worked for a while, but I don't think she understands it now.

This evening I found that she'd opened the flaps at the bottom and not done them up. Pooh everywhere. I've started to think of the twenty-minute quickwash on our machine as the "Mum's Been Messing With Her Bag" setting.

One other thing I've just thought of, the stoma nurse gave us some semi-circular, plasticky stretchable adhesive strips which you stick around the outside of the bag, where it sticks to the skin. I think they're known as elastic tapes and they're sort of C-shaped. You stick one around each half of the bag, covering both the skin and the edge of the bag. Belt and braces sort of affair, even I found them quite hard to get off, so you might want to ask about them. Downside was that we seemed to have more leaks when they were fitted, though they may have coincided with a dodgy batch of bags.

I take it you know the Jelly Baby trick? Changed my life.

What is the Jelly Baby Trick? Thanks.. Will post further about my Mums's dementia and stoma in a minute.

 

[jenniferpa]

As this is an old thread and many people making the original comments no longer post on the forum, I am closing it to further comments.