Hepatic Encelopathy

[Peeps7]

Peeps has been suffering from HE for at least two years, the episodes are accelerating and are becoming more irrational and impossible to deal with. He reeks of ammonia despite maximum dose Lactulose, Rifaximin and daily enemas from the District Nurse. He is also being treated for an ongoing Campobylacter infection. I am at my wits end, his mood swings are appalling, he is incredibly verbally abusive with foul language, just to me of course, so critical and has now started throwing things at me. Last week I was so desperate I phoned the Samaritans and if it wasn’t for my six little grandchildren, I would not still be here. I just do not know how to help or keep going, Anne.

[Lilyrosemarie]

Oh Anne, bless you. I do know how you feel as Steve behaved like that but I know it wasn't 'him', it was the HE. This is such a cruel disease and so hard for us to see our loved ones suffer. Please look after yourself xx

[Peeps7 in reply to Lilyrosemarie]

Oh Christine, thank you, he tells me I am going mental! I am beside myself and it is like living in a nightmare. I know it is an awful question but how long is this likely to go on for? Love, Anne xx

[Laura009]

I am so sorry you are having to deal with this as if the situation isn't difficult enough for many. Maybe you could contact the National Domestic Abuse Helpline 0808 2000 247. I know he is ill and has HE but you shouldn't have to put up with this kind of abuse.

I hope you find a good outcome.

Take care

Laura

[Peeps7 in reply to Laura009]

Thank you Laura x

[Isabelle2]

Oh my poor love. That is awful.

I had HE before my transplant and it was a very strange time. I can’t remember all of it but know some of what happened. It was completely irrational as was I.

My Dad died earlier this year from Alzheimer’s. His behaviour became very difficult before Christmas. He had a live in carer although for 2 weeks I took over for the festive period. He certainly wasn’t very nice or cooperative to me or my daughters and had been impossible with one of the carers.

I completely understand your feelings. How can you let down the person you love the most in the world but how can you go on when he is being a danger to you and also himself.

I hope you have told the gp about the change in behaviour. It there any help you can get from social services etc? Are your finances such that you can pay for a carer to come in and give you a break?

I know the situations are not identical but my Dad was impossible to shower. We got an extra carer from a different company to come in to help with this. They wore a uniform and we said it was a ‘Nurse’. Not nice to lie to your Dad but it worked.

Laura is right, you must take care of yourself and perhaps calling and reporting his actions as abuse might help.

You are not of an age where you can rely on being stronger than him when he is angry. I remember one time when Dad was physical and although he was 89 and I am 54 he nearly had me over.

Please take care of yourself so you can take care of him.

Isabelle xx

[Peeps7 in reply to Isabelle2]

Thank you so much for your kind and supportive words Isabelle, it is so reassuring to know that there are others out there who have been on the receiving of this. Yes, I have been very pro-active this week and recruited help from my GP (anti-depressants - no thanks!), Peeps' clinical nurse at the Hospice who has tweaked his meds, his District Nurse and social services. Time will tell! Anne x

[Isabelle2 in reply to Peeps7]

You are clearly doing everything you can. Sending you and Peeps all my love

Izzy 😘😘😘😘

[Hidden]

I understand how HE is as I was affected by it.

When I got that bad, I was always admitted into hospital to get things back under control,

I dont really remember as I was not aware of anything I was doing only realising days later where I was after the HE was back under control

On going HE can cause permanent damage, it may be time to call for help

David

[Hidden]

Good morning Anne,

I am sorry to hear of the difficult time you are having.

Have you tried mentioning it to the District Nurse that comes in daily ? May I suggest you speak to your own , or your husbands GP?

I have included links to other agencies for help, and as we have said before , our nurse led helpline is available Mon-Fri 10am-3pm on 0800 652 7330 (except Bank Holidays)

samaritans.org/

nationaldahelpline.org.uk/

nhs.uk/live-well/healthy-bo...

mind.org.uk/

I am sure our forum members will support you as best you can, but please reach out , there is always someone there to listen.

Please take care,

Trust9/Kirsty

[mattymoo33]

Hi my love.

I cannot express how much he needs you.

I have had several HE episodes, most I can't remember.

You do need to look after your own wellbeing. Please find something you love to do, just to get "him" out of your head.

I know he can get better, just keeping the laxatives up, so his body can get rid of toxins.

I wish you all the best, as someone who knows...💖xxx

[cammeag]

Hi. To those saying report this as abuse, so speaks the ones who have not personally experienced HE themselves. I can only go by my own episodes which still happen if my diet is poorly and my protein intake is too high(fine balancing act). Some are right, you are not alone. If you want my contact I am here 24/7 after suffering myself and being helped, how can I not offer that to others. That’s where Samaritans etc, useful as they are, just listen, they cannot help.

When hubbie has a lucid, calm moment, speak to him calmly and explain that your not going crazy but this is what he does, and explain it to him. Tell him you just want him better but cannot take stress much longer!! HE is mind affecting. I saw aliens in hospital dressed as nurses, I laugh now but I was terrified at the time. In the meantime, keep the lactose to a maximum, wear a face mask to block smell out, a little lavender on inside, say it’s for Covid protection. A good diet of fruits and vegetables essential to get toxins moving through gut. I eat 1 to 1 and a 1/2 pounds of fruit alone daily. That is costly so I hope you get disability for him, there’s where carers can help. Also keep his protein intake around 100g per day...a good diet tracker on your mobile can help you there. Fat secret is free and excellent. If you cannot do this tell one of the family members to put put it on their handset and tell them his diet every three hours. They can then tell you how much protein, fat and carbohydrates he is ingesting daily. Like I said..I AM here if you need me, cammeag, at hot mail, dot com so feel,free if at whits end to contact me.

Hope you and hubbie both find peace and a measure of happiness soon

Regards

David

I’ve been typing this quickly so no spell check sorry

[Peeps7 in reply to cammeag]

Thank you David for your very helpful, incredibly understanding post. I am so grateful to you for taking the time and effort, let alone the benefit of your experience of this aspect of this filthy disease. Peeps is not great with fruit and veg so that is a really good pointer which I have stepped up thank you. As you rightly say it is all about these foul toxins and their expulsion. Yes and the net result might feel like abuse but at the end of the day, I have a poorly, physically ill husband who is unaware of the changes in his own personality, I totally get that and he is not to blame. Thank you very much for your personal info, I appreciate same. Love, Anne xx

[cammeag in reply to Peeps7]

thank you Anne. As i said, anything i can do to help....glad to see the uptake of fruit and veges. Those along with a diet slowly stepped up will hopefully get hubbies bowels moving. Along with the food and drink, i strongly relied on nice relaxing music to take my mind from tv, its incredible how images will stick in your mind with HE, but i found spiritual music at jw.org to really relax me. Im not promoting any faith here just what helped me relax. Theres music, drama and story telling....it may make your husband worse oh boy i hope not you have my email Anne, like i said, if your in a rut and need help you can drop me a line or find me on facebook, DAVID REID, friends include Rab Reid, Cameron Reid, Nancy Donaghy or get in touch via messenger. When i say i pray, i actually mean it, an you and peeps are in mine tonight. Take care, David.

[Dragonheart11]

Hi Anne hope you are ok this morning please seek some help with this HE episode - there is more they can do surely ! Thinking of you ! Stay strong

[Peeps7 in reply to Dragonheart11]

Thank you for your support Dragonheart, it is much appreciated. Every day feels like an uphill struggle and I never know “who” is going to wake up but is wonderful to have all your support out there. Love Anne xx

[Bellarman]

Hi peeps7, I also suffered Encephalopathy after I had a TIPPS put in place between my hepatic vein and portal vein to bypass my liver, that the one thing they didn't tell me it could be a problem, but once I knew what it was all about after ever so many years, I got to know some of the obviously signs like very slurred speech and confusion like you weren't really here if that makes sense, yes a lot of times it went to far before I realized and my partner and family kept me right, unfortunately I go twice into encepalopic coma didn't need any life support thank goodness, I was actually on the lactulose, rafaximim and fibrogel to help with bowel movements that's the only way to get rid off Ammonia out of your system, unfortunately it doesn't get rid of a lot but it really helped and another thing is drink lots lots of water just plain simple water cus the more you go the less Ammonia is in your system, I hope all that helps. PS I forgot to mention also Movicol its also a laxative

[Witcat]

Anne, I am sorry you are going through this and I understand how hard it is when someone you care for has HE .

My husband had HE and was already on the maximum doses of the above meds you mention.

While we were at the transplant until for assessment he become very ill and his HE was very bad they suggested a new drug called L-Ornithine L-asparate granules, the doctors shortened it to Lola.

You dilute the granules and drink it, it is like an orange flavour.

I can't tell you the difference this made to him, it was like night and day.

I would say it is certainly something to ask about, anything that help him and you get the person back is worth it.

Thinking of you and take care.

[Lilyrosemarie]

Hi again Anne, I've been reading other people's comments which are really helpful. I felt so alone when I was looking after Steve. He also made out it was me who was going crazy and I began to think I was. He never remembered what he'd said or done after an episode. Most episodes were sorted out when he was hospitalised as he would never take the Lactolose at home! Stay strong Anne and you know we are all here for you. Take care xx

[Peeps7]

Oh Christine, thank you, you totally “get it”, none of my family have any conception or understanding, unless you live under the same roof with HE, day in and day out, I guess there is no other way. I too am the one with the crazy issues and it is so impossible to live with. Thank you for your kind words, as always, and complete understanding, it really helps. Love, Anne xx