Faecal Incontinence

[Diannie]

i would be grateful for any advice. My husband (5th year since Alzheimers diagnosis) has started leaking runny poo during the night. I put paper on the bathroom floor but this morning found it all over the hallway as well. I use kylie sheets on the bed and he has pads and pull ups. But takes these off and hides them in various places. This morning they were stuffed in the loo. The doctor has examined him and says he is not constipated and his prostate is fine. He has a bland diet. Therefore it’s down to his dementia and left it at that. I’m almost afraid to go to sleep because I never know what I’m going to wake up to. Short of staying up all night I don’t know what else to do. We are due to go away for a few days but can’t risk making a mess in someone else’s place. The strange thing is it only happens throughout the night and usually during the few hours I manage to grab some sleep

 

[Cat27]

I’ve no answers but I just wanted to wish you strength to deal with it.

 

[Izzy]

I'm so sorry to read of your problems. Continence is such a hard thing to deal with.

I know you've seen the GP and he hasn't been very helpful. I wondered if you attend a continence clinic or see a continence specialist nurse. If so perhaps you could get more advice from there.

 

[Macduff]

Hi diannie, sounds awful. I agree that your next step has to be a specialist nurse. You should be able to contact one through your GP.

I have a similar situation with my wife. There's usually an accident or mess to clear up around midnight, sometimes during the day too. We use tena pads and this helps but of course not in the loo.

Sadly we don't go away either. Too difficult to manage.

The uncertainty of when it might happen keeps me awake too but because washing/personal hygiene is also a problem I worry that she will pick up an infection. Worse still and I'm ashamed to say this, she never admits to making the mess and it gets to me. 'It wasn't me' or 'I have not been to the loo' is what I get. I don't mind cleaning up, she would do if for me, but it's the denial that I struggle with. I feel I'm cleaning up someone else's mess and that's not a good place to be.

 

[Tin]

When my mum had a severe case of diarrhoea that seemed to go on for weeks, I got better advice from the continence clinic, they changed her prescription, told me to try and pinpoint the foods that may be causing this, not to give her a huge meal at teatime or just before going to bed, and to go back to gp and insist on a prescription to sort the problem. Although not diarrhoea, runny poo is still sometimes a problem but it is generally during the day and most of the time I can get mum to the commode in time, but getting her to sit there for longer than a minute is hard so I sit on a chair in front of her. a second gp told me to continue giving mum Feroglobin liquid daily, as this can help to thicken/bulk bowel movements, I know, I can hear some of you saying 'how'! but that's what the gp told me. The bit I hate is emptying and cleaning the pot from the commode! but she will not sit on the toilet anymore, the bowl is a bit wobbly, due to her wiggling and pulling at it all the time. So I now have a commode in her bedroom and one in the bathroom.

 

[Joel]

My husband too has incontinence of stools. Whenever we change his diapers, we clean it up . He is bedridden for the past 4 years. Is that the case with all last stage patients?

 

[Diannie]

Thank you all so much for your replies. I appreciate them all. I have just come back from the out of hours Centre as he has not passed urine for over 12 hours. I now have to wait until midnight and if he still hasn’t been have to ring a&e for possible catheterisation. Meanwhile given one of those little bottles to collect a stool sample. I feel desperate as he is so confused and can’t understand anything I say as I can’t understand him either. This has got to be the worst thing I’ve done so far but managed to collect some. Just wonder what is round the corner. Thank you all again

 

[Diannie]

When my mum had a severe case of diarrhoea that seemed to go on for weeks, I got better advice from the continence clinic, they changed her prescription, told me to try and pinpoint the foods that may be causing this, not to give her a huge meal at teatime or just before going to bed, and to go back to gp and insist on a prescription to sort the problem. Although not diarrhoea, runny poo is still sometimes a problem but it is generally during the day and most of the time I can get mum to the commode in time, but getting her to sit there for longer than a minute is hard so I sit on a chair in front of her. a second gp told me to continue giving mum Feroglobin liquid daily, as this can help to thicken/bulk bowel movements, I know, I can hear some of you saying 'how'! but that's what the gp told me. The bit I hate is emptying and cleaning the pot from the commode! but she will not sit on the toilet anymore, the bowl is a bit wobbly, due to her wiggling and pulling at it all the time. So I now have a commode in her bedroom and one in the bathroom.

Hi Tin
Sorry to return to this . But the problem is still ongoing. Can you give me some idea of the prescription you were given to sort the problem. The dementia nurse is coming out next Friday. I feel such a failure now because I struggle too much coping with the “poohey” mess all the time. Especially when advised to stay calm and not make a fuss. I know its an impossible question to answer but can anyone give an idea of how long this incontinece stage can last?

 

[Tin]

A prescription for Loperamide Hydrochloride. You can buy a diarrhoea relief product over the counter. Mum's diarrhoea went on for weeks and I just could not cope so I rang incontinence clinic and the nurse told me to go back to gp with a request for a prescription.

Incontinence is not so much a stage, but once started it will continue.

Not a failure, absolutely not, how many people do you know that have to clear up someone else's bowel movements, especially when its diarrhoea.

Has the gp asked for a stool sample?

My mum still has days when bowel movements are very runny and on those days I give her the pills, sorry to be graphic, but it fills her pad, wash and change and within seconds clean pad completely full and if I did not give her the pill it would just go on all through the day and night and I just cannot clean the mess without getting a little angry with it all, especially when I have to clean carpets and floors.

 

[Diannie]

A prescription for Loperamide Hydrochloride. You can buy a diarrhoea relief product over the counter. Mum's diarrhoea went on for weeks and I just could not cope so I rang incontinence clinic and the nurse told me to go back to gp with a request for a prescription.

Incontinence is not so much a stage, but once started it will continue.

Not a failure, absolutely not, how many people do you know that have to clear up someone else's bowel movements, especially when its diarrhoea.

Has the gp asked for a stool sample?

My mum still has days when bowel movements are very runny and on those days I give her the pills, sorry to be graphic, but it fills her pad, wash and change and within seconds clean pad completely full and if I did not give her the pill it would just go on all through the day and night and I just cannot clean the mess without getting a little angry with it all, especially when I have to clean carpets and floors.

Thank you Tin for your reply. Yes I had to send a stool sample (by far the worst thing I have had to do so far as he couldn’t understand what I wanted him to do). It came back as normal. Loperamide was prescribed which sorted it for a couple of days. He then got agitated and obsessed because he thought he was constipated and spent ages in the loo trying to go. Now I find it in solid messes on the floor saying he doesn’t realise he has done it.

 

[lambchop]

I found the faecal incontinence incredibly hard to cope with (my mum). I tried so many things, including contacting the incontience nurse. Another suggestion is probiotics specifically for IBS (even if he hasn't got IBS) as I don't know that taking anti-diarrhhoea meds long-term is a good idea. Mum's gp said it's worse to be constipated. I'm sure you are only using it when really necessary though. I think, unfortunately, you will have to keep investigating until you find or possible reason for the problem. I kept a toilet diary funnily enough. IN the end though, in my case, there was no reason and I had to just accept the vagaries of mum's incontinence.

It is much more difficult if your husband won't keep the pads on - my mum didn't like them at the beginning either - but you may find that he will accept them sooner rather than later.

Sorry to be the bearer of possiblly more bad news. Dementia is something that just cannot be controlled, especially in the later stages....... I hope you have help, ie carers. Night-time toileting is the worst. But all you can do is your best in very very difficult circumstances.

One last thing - I assume his urine has been checked and/or his bloods, just in case there are infection markers there.

Good luck.

 

[Diannie]

I found the faecal incontinence incredibly hard to cope with (my mum). I tried so many things, including contacting the incontience nurse. Another suggestion is probiotics specifically for IBS (even if he hasn't got IBS) as I don't know that taking anti-diarrhhoea meds long-term is a good idea. Mum's gp said it's worse to be constipated. I'm sure you are only using it when really necessary though. I think, unfortunately, you will have to keep investigating until you find or possible reason for the problem. I kept a toilet diary funnily enough. IN the end though, in my case, there was no reason and I had to just accept the vagaries of mum's incontinence.

It is much more difficult if your husband won't keep the pads on - my mum didn't like them at the beginning either - but you may find that he will accept them sooner rather than later.

Sorry to be the bearer of possiblly more bad news. Dementia is something that just cannot be controlled, especially in the later stages....... I hope you have help, ie carers. Night-time toileting is the worst. But all you can do is your best in very very difficult circumstances.

One last thing - I assume his urine has been checked and/or his bloods, just in case there are infection markers there.

Good luck.

Thank you lamb chop. Yes he has had usual tests and they all come back normal. In a way I wish they could show a reason. I realise it is probably inevitable. My solution with my GP is a prescription for Valium for me to take “when under extreme stress”. Helps a little

 

[lambchop]

I'm sorry it's got to that stage but I fully understand. It's extremely stressful to say the least. Do you have access to an admiralty nurse - a specialist nurse who supports carers of PWD. You could ask the GP or contact Dementia UK directly. Do you have carers to help you during the day, even if they don't come at night? Or would you be able to attend a support group, just so you can vent or cry?

 

[Diannie]

I'm sorry it's got to that stage but I fully understand. It's extremely stressful to say the least. Do you have access to an admiralty nurse - a specialist nurse who supports carers of PWD. You could ask the GP or contact Dementia UK directly. Do you have carers to help you during the day, even if they don't come at night? Or would you be able to attend a support group, just so you can vent or cry?

I don’t have any Carers to help at the moment. There isn’t an Admiral nurse in our area. But my husband does go to a day centre 2 and a half days a week which does give me a break. I have spoken to the dementia adviser who gave me general tips like going to the loo with him and checking while he is in there. The constant obsession with this gets me down as well as feeling permanently queasy

 

[lambchop]

Hi Diannie, you say you don't have any carers - are you in a position to get some or even get a carer's assessment for YOUR needs. I'm glad your hubsand goes to a day centre. As for the feelings of obsession and queasines, I fully understand and empathise - I felt just the same. It took me ages to relinquish mental control of the situation and accept things as they were. I also had to go onto anti-depressants to help. I'm not suggesting the same for you, but, in the first instance, look into extra help and could you try meditation or mindfulness for yourself? There are plenty of such resources online and apps such as headspace on your smartphone if you have one.

What about respite care - if this is something you (and your husband). You could get some time for yourself and your husband could go into respite care for say a week or two. The most important thing I can say is that it is very unlikely your husband's toilet habits will improve, so the only thing you can do or control is your time for yourself.

 

[Diannie]

Hi Diannie, you say you don't have any carers - are you in a position to get some or even get a carer's assessment for YOUR needs. I'm glad your hubsand goes to a day centre. As for the feelings of obsession and queasines, I fully understand and empathise - I felt just the same. It took me ages to relinquish mental control of the situation and accept things as they were. I also had to go onto anti-depressants to help. I'm not suggesting the same for you, but, in the first instance, look into extra help and could you try meditation or mindfulness for yourself? There are plenty of such resources online and apps such as headspace on your smartphone if you have one.

What about respite care - if this is something you (and your husband). You could get some time for yourself and your husband could go into respite care for say a week or two. The most important thing I can say is that it is very unlikely your husband's toilet habits will improve, so the only thing you can do or control is your time for yourself.

Hi Lambchop. Thank you for your reply. I last had a Carers assessment in 2015. I have asked quite a few times since and keep getting told I am on the waiting list which could be between 3to 6 months. We are also still waiting for a Care needs assessment for my husband. I’ve been told to keep badgering them. But I get so fed up and just carry on. Our GP is sympathetic and prescribes Valium “to be taken in extreme stress”. He goes to a Day Centre for 2 and a half days a week (costs£115 per week). I was told by our adult social services that as I am already paying this to carry on until his assessment when it could be reviewed and I may get help. Now with kylie sheets, pads and pull ups the costs do mount up. He is always placid and generally seems happy so I am reluctant to let him go for respite without me as I know he wouldn’t settle. My daughter has suggested us going away and she will come with us to help. So I have booked for us to go away for a few days over Easter. You are right it probably won’t improve so I will have to grit my teeth and deal with it. Thank you

 

[lambchop]

Hi Diannie,

That's appalling how much you are having to pay - I can't believe it costs so much to attend a day centre! But why are you having to pay for the pads - the district nurses or incontience service should be prescribing them for you. And I am so sorry you are having to wait and wait for an assessment of your needs and your husband's. I'm not at all surprised you are so fed up. We're expected to care for our loved ones and aren't even given the help to do so. What area of the country are you in? I live in the Borough of Barnet and, although there have been tons of cuts, I did get pads (not kylie sheets or pull ups). I had requested carers early on in mum's care, so I already had some in place when things got very bad. I'm sorry that you are in a desperate situation and aren't getting the help you really need, and now.

If your husband is on benefits, I hope this is helping with the day to day costs. My mum's benefits were a godsend (now all gone of course since she passed away).

I hope you manage to enjoy your few days away, somehow. And that you will have the energy to chase up these agencies on your return. It is hard work I know but I think it's the only way - to chase them and say it's urgent, you're desperate and at your wit's end.

 

[silkiest]

Hi Diannie,
my MIL despite only being in the early stages of alzheimers had intermittent diarrhoea, the Gp was going to refer for suspected cancer when I asked about her diet. It turned out that when buying herself sweets she bought whatever was in the shop (sugar free or normal) - the diarrhoea happened when she ate the sugar free ones as some sweeteners cause loose stools. I now check her cupboards regularly and remove all sugar free mints and chewing gum and the problem has resolved. I know this is a very unlikely cause, but its worth checking everything.

 

[Tin]

You need to get your husband's gp to make a referral to continence clinic. As suggested, it is a good idea to look at his diet, I had to do this a few months ago and discovered that mum was probably lactose intolerant so now on soya milk and other diary substitutes. For my mum there is a possibility of bowel cancer, but we could not take it any further because the investigation and possible treatment would do more harm than good.

 

[Diannie]

You need to get your husband's gp to make a referral to continence clinic. As suggested, it is a good idea to look at his diet, I had to do this a few months ago and discovered that mum was probably lactose intolerant so now on soya milk and other diary substitutes. For my mum there is a possibility of bowel cancer, but we could not take it any further because the investigation and possible treatment would do more harm than good.

Hi Tin and Silkiiest. I have made a request via the district nurse to be referred to the continence clinic. She said I wouldn’t be eligible for help yet

because I need to be using in excess of 8 pads a day, which we are not at the moment. It’s because we are not on benefits that I can’t get financial help. We had a financial assessment and were told that as we have no mortgage and my husband has a private (although modest) pension that makes us self funding