Hepatic encephalopathy

Hi there,

My mum has hepatic encephalopathy due to being given codeine last week. ( she has cirrhosis of the liver due to haemochromatosis. ) she's incredibly constipated and dehydrated and opiate toxic

It took days for doctors to work out what was wrong with her . Her rapid decline in health was alarming. She's now in hospital ( day 4 ) and she's been on lactulose and now having daily enemas. She still isn't having significant bowel movements. Her stomach is so distended . Today she's been put on oxygen and rather than getting better she's looking worse! She's no longer talking but she is aware of me being with her.

This is the first time she's had hepatic encephalopathy and I was just wondering if anyone else has had the experience of waiting 4 days for stools to soften? I know she just has to poo to feel better but it's so horrible seeing my mum absolutely helpless ( can't move . Can't feed herself , slurred words when she's able to talk. Glazed eyes . Etc )

18 Replies

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  • Hello Laineyg it sounds as though your mum is having an extreme episode of Hepatic Encephalopathy--- I am glad that she is receiving aperients and you will be amazed at how quickly she should recover when her bowels are sorted - it is really important to ensure that she does not become constipated and / or dehydration- - it is really important as a means of , potentially , preventing such a severe episode.

    Plenty of fluids and regular aperients will also help and walking, if she is able

    I had an episode of Encephalopathy two years ago and it was a very frightening experience which took a week of intravenous antibiotics and lots of aperients and fluids to bring the episode under control - I was discharged after ten days with the advice I have given above and an oral antibiotics called Refaximinwhich I have taken ever since and, thankfully, no reoccurrence of Encephalopathy.

    I wish you , your mum and your family the strength to get through this awful time so that you can move onwards and upwards-- my personal mantra is. FAR:

    Fluids

    Aperient

    Refaxamin Best wishes Esmeralda

  • Thank you for your reply, I think my dad has been very unaware of possible signs and symptoms of an HE episode .

    Is it possible for an HE episode to take a few weeks to build up? When I now think about it my mum had been getting quite mixed up / confused while having conversations with. She was slurring her words and "losing" words and she was sleeping more than usual. I'm now wondering if the shoulder pain was from the HE rather than the fall weeks prior as we thought . It would be useful to know these pointers just in case it happens again and we can catch it before she ends up looking and feeling so ghastly .

    I will remember your mantra. Thank you so much .

  • The gradual build up of toxins is what will have brought on your mums symptoms so yes the sleep alteration and the speech, conversation issues have probably been down to the increasing amount of toxins. The shoulder pain you refer to won't be a result of HE but when the liver is inflamed you can get 'referred' right shoulder pain from the liver, 'referred' left shoulder pain from an enlarged spleen. HE can also cause an unsteadiness of gait which might have contributed to mum's fall.

    My hubby permanently has the milder (although major in the way they affect his life) symptoms of sleep disturbance, fatigue, confusion, trouble comprehending or making himself understood, speech issues, concentration difficulties and difficulty following instructions.

    He hasn't (thankfully) ever had a major episode but we really, really watch his bowel movements and make sure he never gets constipated. He's on 40ml Lactulose a day (we increase this if he hasn't been sufficiently) plus Rifaximin. We find that coffee, chocolate and rich fruit cake also act as laxatives for him so he adds those into his diet if he feels a bit bunged up - so to speak.

    The British Liver Trust has a page all about Hepatic Encephalopathy at :- britishlivertrust.org.uk/li... which might help you understand the condition and the signs to look out for.

    All the best to you and the family, Katie

  • That's all really very helpful. Thank you. I was aware that all these things could happen but didn't realise it would "build up". I live in England and mum and dad are in Perth, Scotland so I don't see my mum for weeks at a time. But I have HEARD the difference in her .i think the codeine she was given just completely tipped her over the edge and into an almost comatose state.

    She's so very very poorly at the moment.

    I will have to fully brief my dad now ( he sticks his head in the sand) on the signs and symptoms so we don't have to go through all this trauma again if we can help it .

    Many thanks again. Elaine x

  • Question - were you told thst cannot drive & let DVLA know of condition (HE)

    ALSO - not to travel anroad?

    Ive also bren toldnI cannot be with my grandchildren unsupervised

    eagerly awsit response please

  • My mum hasn't driven for years due to decline in her health ( her legs mainly)

    And again due to her health , ( osteoporosis and needs to be in a wheelchair for any sort of distance ) my parents wouldn't travel abroad now .

    Sorry I'm not much help x

  • Thankyou for your respons e

  • Hi there. I'm not doing so well. The hospital weren't happy with mum's progress so they gave her an ultrasound and then gave her an MRI . Found out yesterday she has a tumour on her liver and it's spread to her lymph nodes. There's nothing they can do for her. She has weeks / months left.

    Rather shell shocked . 😢

  • Sorry to hear that, going through the same with my parent , we just went on a holiday

  • Hi vulnerable

    Yes , I was told not to drive and had to,surrender my driving license to DVLA-- if you don't inform them and return your license you can be fined !

    Also , I had to stop looking after my grandchildren ( 8 and 5) in case I had another fit or small stroke - I was mortified -they add such a lovely dimension to my life but I wouldn't want to be the cause of any problems---- Happy Days !!! Are you doing ok at the moment ? 🌻

  • Hi Lainyeg

    I can only tell you what it was like for me and you might be able to see some similarities

    It took my family a couple of weeks to start to question my behaviour leading up to my first hospitalised episode

    Like you , they don't live with me but I see them regularly and , apparently I started hearing singing and couldn't understand why they couldn't !

    Also, I heard people talking to me and there was no- one there and,again my family were starting to get concerned because , I am usually quite articulate but I had no insight into the fact that this was the beginning of an HE episode

    It was like living in a separate world ,made worse by the nausea leading to constipation and dehydration and I started to become delusional and having horrible nightmares which I thought were real !,!

    As soon as I got into hospital and started IV antibiotics and was put on a drip to rehydrate and aperients for the constipation, the ammonia that had been building upin my ' gut ' causing mayhem , started to dissipate and after a few day, I felt ' more like myself '

    With hindsight I wish I had taken advice from family and friends who knew that I not myself ' but I did not realise how unwell I was ( I don't know if ant of this rings any bells to you but it is reassuring to know that your mum can come through this is she is given the right treatment ASAP and that she and you are not alone

    I hope you have an understanding GP and Consultant - mine are both very good -- best wishes x😳😊

    ,

  • Hi, I have been in the very same situation. My.mum didn't poo for over 2 weeks. She did eventually and it certainly made her more comfortable. Unfortunately the other symptoms you describe have persisted. Not sure if that's just cos my mum still isn't regular or that the toxins from her liver are causing it. I feel that for us we are stuck between a rock and a hard place. It's a balancing act between keeping her pain under control and her being constipated. As my mum barely does have her pain under control we choose to have more pain killers. Awful decision to make and not something I would wish on my worst enemy. I can't give any advice but just empathy and understanding. Keeping everything crossed that you mum is better soon x

  • I can concur with all the above replues

    The interesting thing for me in whst you say is thst the HE was brought sbout by your mum taking codeine!!! I had my first episode of HE in Feb this year. No recollection of events and wss terrified when i did become aware a few days later. I had taken a codeine 30mg as I had s heavy cold. Did a medic tell you thiscwad due to codeine? Or did the codeine cause constipation and subsequent build up of amonia?.

  • Until my mum had the codeine (in hindsight) I see that she's hadn't been quite "right" but I thought it was just old age and possibly even the start of a bit of dementia ! It was only here and there that she'd get confused but I'm now thinking it was probably minor HE. Before the codeine she was still on her feet , chatting , completely normal.

    Within a day of taking codeine she rapidly went downhill , frighteningly so, slurred words, inability to move in bed for herself, distended stomach ( its massive!!!!) confusion, pin prick pupils ( this is due to opiate toxicity ) , jaundice , glazed eyes, shortness of breath. When I saw her I honestly thought she was dying! All within 4 days!!!

    The hospital have told me it is due to the codeine that she's so poorly, she hasn't been able to break down the codeine, so they've had to wait for the opiates to leave her body ( her eyes / pupils do look better now) and they've been helping with her bowels, at last we have a little bit of bowel movement , she did seem much brighter yesterday but talking absolute nonsense but she was alert and talking so I was happy!

  • a DR once said the mrs has the useable liver of a two year old, and we would watch what we gave a two year old.

    sorry but when she is in this semi-coma all you can do is wait.

    there is a hepatic encephalopathy support group facebook site they are based in the usa, but they have livers to,

  • Thank you, I'll look them up . X

  • I am so very sorry for you and your mom. It would seem her opiate level is high enough to constipate her severely ( I've been there, awful). Enemas won't do it; she is given a stool softener by now I would hope! I was diagnosed with haemochromatosis a year ago after suffering from abnormally high liver panel. Now my daughter has been diagnosed with it after abnormally high ferritin was discovered; she's 41 and otherwise looks great and is very fit, but...have you been tested? It is hereditary as I'm sure you know?

  • Yes the stool softeners are finally beginning to work ( it's taken 5 days so far)

    My whole family on my mums side have been tested for haemochromatosis. Unfortunately our family found out when my mums sister died suddenly and it turns out she had it but no one knew. We were all tested. My 2 cousins have it and my mum, but no one else in the family.

    I reckon my mum would have been about 60 when she found out she had it. It's only actually affected her in the last 18 months when she had a massive varices bleed ( a year past oct) .... doctors couldn't believed she survived it.

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