Hi all, I’m looking to share any of your stories about living with or caring for someone with decompensated liver cirrhosis.
My mum was diagnosed in June this year, aged 71. It’s been described as alcoholic liver cirrhosis despite mum hardly ever drinking... maybe a couple glasses at a family gathering, that kind of thing so hot incredibly unlucky.
The rollercoaster has been unbelievable, and it’s so difficult to get straight answers from people! We have an amazing set of carers and District Nurses though I have to mention. We where warned she would be up and down but the bad times particularly with HE can see her bedridden unable to function normally at all, to within 24 hours eating like a horse and wanting to go for a walk! This particular episode we’re living through at the minute she’s quite active physically but mentally quite dementia like, sometimes thinking we’re tricking her, sometimes laughing for hours. It’s very emotionally tiring and desperately sad for us all to see our wonderful vibrant mum turn into this so suddenly, and she had a moment of clarity with words and thoughts this morning when she cried telling me she didn’t want her girls to go through what she’s going through. Heartbreaking. She is home and wishes to remain so.
Guess I’m just after others experiences and any tips!!
Thanks for reading xxx
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DaVinci1
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Hi DaVinci1, sorry to hear about Mum's situation. I wonder why they've plumped for alcohol related liver disease when your mum isn't a drinker to any degree. There are many other causes of liver disease which arn't alcohol related at all.
Anyway that being said once it reaches cirrhosis stage it is more about managing the symptoms/side effect that it brings along.
It would appear that HE is mum's major issue. Is she prescribed Lactulose and Rifaximin to help with that? In combination they are good at keeping symptoms at bay. Mum needs to be toileting 3-4 times daily in order to rid her body of the toxins. Some people find at this stage that leaving red meat out of the diet is also beneficial as it leads to more ammonia release than other meats.
The British Liver Trust have an excellent page/publication on HE which might be of benefit to you all. Also worth looking at the BLT page on cirrhosis and the patient charter one which highlights what care mum should receive.
Never be scared to ask for help/advice on here, there is always someone who has been in your situation to let you know how they managed things.
Thanks Katie,I’ll look at those. Mum was diagnosed with Thrombocytopenia 4 years ago which we now know often goes hand in glove with cirrhosis, but weren’t told at the time. Either that or mum didn’t tell us as she’s the type of my who doesn’t like to worry you!
She has lactulose regularly but it’s when she has days when she’s not eating that it’s bad, and then there’s nothing to poo out from the lactulose. Her spleen and pancreas are also quite bad, she was given about a month to live 5 months ago but she’s a tough bugger! She’s had bloods with this bout and no signs of any infection to trigger the HE either, and definitely not eating any red meat.
She was about to be hooked up to a syringe driver 2 weeks ago as she was on so much pain , then 12 hours later she sat up and said I’m getting up today, and she did! Showered herself another 12 hours later! It’s so crazy! Thank you so much for your reply xxx
Forgot to say Consultant advised against the antibiotic mentioned in her case x
Hi and welcome,
Katie has kindly already shared links to our website. If you would like to speak to one of our nurse specialists, the helpline is open Monday to Friday 10am to 3pm on 0800 652 7330
I do tend to throw a spanner in the works from time to time, but there have been some rare cases called Auto-Brewery Syndrome. This is where a person can generate alcohol inside their own body.
Fermentation in the gut is a normal part of the digestive process and happens through the breakdown of food by normal bacteria in the colon. However, in people with the auto-brewery syndrome, fermentation happens in the small intestine, further up the digestive tract. Certain fungi have been found to be responsible for producing alcohol, such as Candida glabrata and Saccharomyces cerevisiae.
I think that there should be a lot more research carried out into this condition. Many people who go to their GP and have been diagnosed with Alcohol-related liver disease have been wrongly blamed for causing their condition. Sadly doctors don't won’t bother to go looking for this, they will just assume that a person has a drinking problem and won’t admit it
Hi DaVinci1. I am so sorry to hear about your mother's condition. I can't understand why we can't get straight answers to things either. It's as if the liver is a new thing and docs have never learned about it! My young sister has been diagnosed with non alcohol liver disease, despite drinking around 112 units a week! I just wonder how they distinguish between the two diseases, when there is overwhelming evidence towards one in particular. It must be so hard for you to deal with all this when alcohol wasn't a major factor. My okder sister died just at the beginning of lockdown from multi organ failure and sepsis of unknown origin, yet when asked, her GP said she only has fatty deposits on her liver after drinking 83 units a week. I wish you and your mum all the very best. Sending love and hugs ❤️🤗
Thank you and I’m so sorry to hear about your experiences too. So true it’s like it’s an unknown organ! Such conflicting information from professionals!Xxx
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