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Old 16-05-18, 03:38 AM   #1
tes
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Default bowel problems and family

Hello everyone. I wanted to see what you all thought. Iv been looking through threads and see that everyone one on this site is amazing!! I am a carer for a lady aged 47 with hd (late stages) she has been bed bound for years, she cant walk, talk or carry out any activities. She has to be fed and wears a pad. Her bed is like a cot full of padding as her movements are quite harsh. I am a lone night carer and wanted some advice. She is living with her daughter (early 20s) who has been her carer since this nasty illness took over. I have been her night carer (home care) for 2 years and have a very close bond with her. I feel that she has chronic constipation. She screams and makes a strange sucking in sound when she is trying to open her bowels. There has been times i have been changing her when she has started to open her bowels and i could see inpacted feces. Her pad is being changed continuously as there is diarrhea (small amount every time). I have spoke to family about this but family wont use constipation medication (even though doctor has prescribed it) because she is still 'opening her bowels'. Im finding it really hard as when i speak to the family about things because they tell me not all hd sufferers are the same. She is given oramorph by family when she is in pain which i know also causes constipation. Im worried as i have read some nasty stuff about chronic constipation not being treated. Oh dear iv babbled on alittle but i have finally found someone i can talk to. My manager is absolutely rubbish so i cant speak to her. (im only staying with the company because of the service user i care for)
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Old 16-05-18, 09:25 AM   #2
Amanda Stansfield
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Default Re: bowel problems and family

Quote:
Originally Posted by tes View Post
Hello everyone. I wanted to see what you all thought. Iv been looking through threads and see that everyone one on this site is amazing!! I am a carer for a lady aged 47 with hd (late stages) she has been bed bound for years, she cant walk, talk or carry out any activities. She has to be fed and wears a pad. Her bed is like a cot full of padding as her movements are quite harsh. I am a lone night carer and wanted some advice. She is living with her daughter (early 20s) who has been her carer since this nasty illness took over. I have been her night carer (home care) for 2 years and have a very close bond with her. I feel that she has chronic constipation. She screams and makes a strange sucking in sound when she is trying to open her bowels. There has been times i have been changing her when she has started to open her bowels and i could see inpacted feces. Her pad is being changed continuously as there is diarrhea (small amount every time). I have spoke to family about this but family wont use constipation medication (even though doctor has prescribed it) because she is still 'opening her bowels'. Im finding it really hard as when i speak to the family about things because they tell me not all hd sufferers are the same. She is given oramorph by family when she is in pain which i know also causes constipation. Im worried as i have read some nasty stuff about chronic constipation not being treated. Oh dear iv babbled on alittle but i have finally found someone i can talk to. My manager is absolutely rubbish so i cant speak to her. (im only staying with the company because of the service user i care for)

oh my word what. You my dear are a guardian angel in my eyes! Your lady will have or should have either a social worker involved in her care or some form of care co-ordinator. If I was you I would contact your nearest safeguarding team and ask for help.
Constipation in anyone as you know no doubt id bl**dy awful, the mess you are finding on the pads will just be overflow. That poor woman must be so impacted by the sounds of it. I would also call her GP and explain to him.
Even though the family believe she is still opening her bowels, the types of medication your lady will be prescribed will need her to have regular constipation meds.

I hope you get the help you are needing, I think you are amazing

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."óDale Carnegie
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Old 16-05-18, 09:47 AM   #3
tes
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Default Re: bowel problems and family

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Originally Posted by Amanda Stansfield View Post
oh my word what. You my dear are a guardian angel in my eyes! Your lady will have or should have either a social worker involved in her care or some form of care co-ordinator. If I was you I would contact your nearest safeguarding team and ask for help.
Constipation in anyone as you know no doubt id bl**dy awful, the mess you are finding on the pads will just be overflow. That poor woman must be so impacted by the sounds of it. I would also call her GP and explain to him.
Even though the family believe she is still opening her bowels, the types of medication your lady will be prescribed will need her to have regular constipation meds.

I hope you get the help you are needing, I think you are amazing

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."óDale Carnegie

Thank you so much for your reply. It really does mean alot. She does have a social worker but in my eyes they dont seem to be fixing any problems. Her GP has been out several times over the past god knows how long and each time they prescribe some sort of constipation medication but the family will only allow it to be given when she hasnt had any overflow for a week or so, as soon as it comes they stop as they think she has diareah. Its so hard sometimes i just sit with her and shes just moaning and screaming. I could cry for her sometimes! I know her family love her to bits and feel awful for telling them what i think is wrong as they dont see it and they probably think im just going on. This is the only site i have been on where i feel people really know about HD. When i started my job in care it was with the elderly. I was so not prepared for what i walked into when i started working withthis lady but i feel i have got to know her and her me. I have even gone to work earlier and offered to take her put in her chair (without pay) to give her family more of a break so that shows this is not just a job to me, i actually do really care. She is an amazing woman and when shes in a good mood she just looks at me while i babble on to her or stroke her hair and face (that makes her gooey) its an amazing feeling also when she laughs with me but i havent seen much of that for a while.
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Old 16-05-18, 06:03 PM   #4
Allan
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Default Re: bowel problems and family

.

Hi tes

One of the main side effects of Oromorph is known to be constipation.
One of the main side effects of Co-codamol is is known to be constipation.
One of the main side effects of many medications is known to be constipation.

My son has HD, I donít. However, Iím the one who has to be very careful with my food and drink input as possible constipation is the bane of my life. Fortunately, Iím now able to control it most of the time - but I do have to be careful with my other medications. About 6 years ago I was taken to A&E by ambulance as the pain (and urge) of inactive bowel movement had lasted several days. I had tried a variety of laxatives - to no avail. The pain (and fear), for a bloke, was the worst I had ever experienced. The lovely nurse got to work and, after a while, the suppository worked a treat. So, maybe a suppository or an enema would be the immediate solution Ö ?

But some people with HD are often unable to effectively express themselves correctly or precisely even when they still have the ability to talk. So, if your lady can only express herself with screams and making a strange sucking in sound then her possible long-term predicament needs an expert professional opinion, in my view. That means her GP should quickly refer her to a Gastroenterologist.

I have been told by a leading HD Neurologist that Dr Anton Emmanuel is the only Neuro-Gastroenterologist in the UK. (www.uclh.nhs.uk/OurServices/Consultants/Pages/DrAntonEmmanuel.aspx). He should be able to give you all (GP, family and you) the solution to the problem.

I also echo Amandaís kind words to you.

Best wishes Ö

.
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Old 28-05-18, 06:07 PM   #5
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Default Re: bowel problems and family

Quote:
Originally Posted by tes View Post
Hello everyone. I wanted to see what you all thought. Iv been looking through threads and see that everyone one on this site is amazing!! I am a carer for a lady aged 47 with hd (late stages) she has been bed bound for years, she cant walk, talk or carry out any activities. She has to be fed and wears a pad. Her bed is like a cot full of padding as her movements are quite harsh. I am a lone night carer and wanted some advice. She is living with her daughter (early 20s) who has been her carer since this nasty illness took over. I have been her night carer (home care) for 2 years and have a very close bond with her. I feel that she has chronic constipation. She screams and makes a strange sucking in sound when she is trying to open her bowels. There has been times i have been changing her when she has started to open her bowels and i could see inpacted feces. Her pad is being changed continuously as there is diarrhea (small amount every time). I have spoke to family about this but family wont use constipation medication (even though doctor has prescribed it) because she is still 'opening her bowels'. Im finding it really hard as when i speak to the family about things because they tell me not all hd sufferers are the same. She is given oramorph by family when she is in pain which i know also causes constipation. Im worried as i have read some nasty stuff about chronic constipation not being treated. Oh dear iv babbled on alittle but i have finally found someone i can talk to. My manager is absolutely rubbish so i cant speak to her. (im only staying with the company because of the service user i care for)

Hi . I just wanted to say - thank you for being such a lovely carer with the lady - I am glad she has you and her family . I have been in different aspects of care work all my life and some people just donít care !! I also have a gene . I agree with all the comments from other posts re constipation as well , take care , Charlie girl xx
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