nash cirrhosis

[bever01]

my hubby has been diagnosed with this and I am trying to find more information re side effects of this disease. He gets really confused and muddled and it would be nice to connect with others who find themselves in the same situation. its hard to explain what you are both going through with people who do not know or understand the disease. just someone to talk to who is in the same boat wuld be fantastic....

[gamesmaker]

Hi. I also have NASH cirrhosis and experience times of confusion (for which I take lactulose). The confusion takes several forms but includes technical things (like not working out that the mobile phone will not change channels on the TV, and also visual hallucinations - seeing things which are not there. I also get a nausea and vomiting - usually in the middle of the night. Your husband is lucky he has your support (many people do not understand NASH - including some medically trained people). My husband died a couple of years ago so he is not around for me any more. My sisters are scattered across the UK and my children across the world - so I go to appointments alone. Always try and go with your husband to hospital appointments, and do not be afraid to take a note pad to write down the answers to any questions . Ask for a copy of the letter which will be sent to his GP. Keep in touch via these pages and good luck.

[bever01 in reply to gamesmaker]

Hi thanks for the reply. It's good to hear from someone who knows about Nash. The confusion is the part of the disease that I really struggle with. It's the thought and concern that he will hurt himself and despite me telling him you can't put sweatshirts on your legs he insists you can!!!! I swing between laughter, frustration and crying. I am not sure lactulose will help as he is diabetic.

I'm sorry to hear you have no support - it must be really hard for you. I go with hubby to all his appointments and will, from now take a notepad.

[Andiball in reply to bever01]

I am the same but couldnt take lactuose but I would advise u to go back to ur consultant as I take a tablet form of a medication that works just as well. Im an ID diabetic, with NASH Cirrhosis, good luck xxxxx

[gamesmaker]

Hi. Apparently the sugar component of the lactulose is not absorbed by the gut. I am also a diabetic on metformin and insulin, and the lactulose has not affected my blood sugar levels at all - and it has helped with the confusion.

[bever01]

Did your dr or consultant prescribe it? I have an appointment with our gp if it helps I might ask her

[Hidden]

I am also diabetic with no issues with the lactulose, and it makes all the difference

Also a Nash sufferer now under way to join the transplant list

David

[Hidden]

hI, just to echo what gamesmaker advised my husband suffers from HE is also a diabetic and has been on lactulose and rifaximin for a number of years, try and make sure your husband keeps hydrated, goes to the toilet regularly, doesn't pick up infections and sticks to a sensible diet...which helps ...laughter helps but sometimes a good cry helps as well, initially when my husband displayed these behaviours I was so concerned and upset ...he had the TIPS procedure and sadly HE is one of the side effects but no one explained that ...thank goodness for the British Liver Trust and the HEP C Trust. He has trouble with electrical gadgets, phones, mobiles etc, taps, putting on a seatbelt etc and instead of putting on his jacket he will put every jacket in the house on! I can laugh now. The symptoms did improve with the medication though . Good luck 😊

[pip-lit]

it IS hard to explain to others. this is why this site is so important. my partner is still in the early stages but I can see definite changes in him, behaviours which are odd. it feels so lonely but of course it's worse for him as he knows there's something wrong. we try to laugh but it's hard to, sometimes. there are good days and not so good days...all I can say is that kindness, patience, love go a long way. hoping for the best for you both xxxx

[bever01 in reply to pip-lit]

I find it extremely hard ? Having been together for 44 years it's distressing to see a strong intelligent person unable to work out how to put tops on the right way and we don't talk about to remotes... He now thinks I am clever because I can "mend" the broken satellite channel...

It's harder to laugh than cry and I have had to learn a little bit of patience. He will always have my love but patience sometimes gets every fraught. And all I seem to do is moan- so sorry.

[pip-lit in reply to bever01]

don't be sorry. this is a good place to let it out - not good for you to bottle things up. helps to know we are not alone xxx

[bever01 in reply to pip-lit]

It's good to know that someone understands. Not a lot of help from the professionals - they don't sit you down and tell you what will happen due to the toxins etc. Throw all these facts and findings at you and then ask if you've got any questions!!! Yes can we start at the beginning please cos it all went In one ear and out the other. Am grateful for the support there is on here thanks.

[AyrshireK in reply to bever01]

Hi bever01, make sure you tell your husbands specialist about these confusion symptoms. He should definitely be taking lactulose to ensure he is ridding his body of toxins but his symptoms seem quite noticeable so he should also really be taking RIFAXIMIN which is an anti-biotic which treats the toxin build up and reduces the symptoms of Hepatic Encephalopathy which has various levels - some of which can be life threatening.

For more details on cirrhosis as a whole you should check out the British Liver Trust main website (if you haven't already) as it is full of guidance and information and when my hubby was first diagnosed with cirrhosis in April 2012 I found it answered a lot of my questions. britishlivertrust.org.uk/li... & britishlivertrust.org.uk/li...

Katie

[bever01 in reply to AyrshireK]

I have written them down so will make sure I mention them. The tablets that is.

We don't see the consultant for another 5 weeks and I did mention the confusion to him but he was more concerned with other things. I am going to talk to my gp and see if she can help. Trouble is he was finally diagnosed late December after months of not knowing what was going on with him and no one sat us down and explained what this disease can do to him. I will not let it drop now I know there is something that can help. Thank you

[alesan in reply to bever01]

It has been so comforting to me tonight to read your post, My husband is currently in hospital due to ascites and kidney problems. He was diagnosed with NASH De compensating liver cirrhosis 4 months. He has had a very quick decline in his health. One of the most worrying problems is the change in his personality. Im sitting alone in my bed crying my heart out for this dear man that has been my rock for 45 years. Thank you for helping me understand a little more.

[bever01 in reply to alesan]

I am so glad that you can draw some comfort from my post. Like your hubby, my husbands' health declined so quickly and the feeling of being alone was overwhelming. The change in personality is the hardest part to accept but to be quite honest, I feel that is little to cope with compared to the loss I would have felt had he not survived. You, like me, need to remember that it is not personal. It is the nature of this awful disease. It isn't easy and I'd be a complete fool and liar to say it was. I have so often wanted to stick my head on my folded arms and just bawl and quit but I can't give up so I cry when I'm in bed on my own and get up in the morning with a 'smile' on my face to enjoy the days that we have left. I do find it extremely difficult to plan ahead and look ahead with a positive attitude but it helps hubby keep some sort of normality in his life. I too have had this man with me for 44 years. my feeling of utter despair, fear and fright must not spoil valuable time. You aren't alone here, so many people will help and guide you. I have found other people's posts valuable for information and support. I'm always here if you need a chat. Not sure if you can see my email address but if you want to talk, scream shout whatever I'm always here. X

[alesan in reply to bever01]

Thank you so much for your kind understanding words. I dont feel so alone now. Thank you

[bever01 in reply to alesan]

Anytime x

[BigSpuds in reply to pip-lit]

I have early stage cirrhosis, but have never heard of Nash. What is it? I've been on morphine fpr a long time and I always thought my strange behaviour was because of that, but now it makes more sense, so I'll ask the doc if I can try it.

hard not to feel sorry for yourself, especia;;y as it's self imposed, but I'm lucky to have a partner who gets it.

Jill

[bever01 in reply to BigSpuds]

Nash is non-alcoholic steatohepatitis. It's caused by fat. He doesn't feel sorry for himself and because he has suddenly started acting so strange and out of character it's me who has the meltdowns. I'm not sure he knows that the silly insane things he does are weird. On good days he's a lot better and can't remember doing anything out of the ordinary.!

[BigSpuds]

My Dad had alzheimers and I know what you mean about it being funny until it hits you now and again and it's then quite fightening. I hope you have people to share all of this with. . I used take turns with my Mum, alternate days when we could, it really took the pressure off, though I couldn't stop thinking about him all the time, and thinking what a shitty time my Mum was having in her last yrars when caring for people should be secondary to enjoying herself.

Anyway on that cheery noer I'm thinking of you - I have cirrohsis myself, but it hasn't bothered me so far apart from the tiredness but I've stopped drinking, doing OK with the cravings, but I haven't told my mum - she's had enough loonies around for a while. My Dad passed away a few years back, and as distraught as I was, and I was a real Daddies girl, he'd always said if he stopped recognising people and doing wiered things that he wouln't want to stay living, and once I got my head around him being gone I was releived for my Mum who for a couple of years was numb but got herself together and now has a new spring in her step.

Enough about me, I really admire your bravery, and as many have said on here keep on being positive. keep writing and sharing. This site is a gift.

[hippoHH]

Can I emphasize also about the Rifaximine. It has helped my husband a lot. Mentally he's a lot more alert with it, though still has problems operating TV remote and mobile phone. I would also recommend a good look at this site around the subject of Hepatic Encephalopathy (HE) which what is causing the confusion. I don't often post on here but have found an enormout amount of helpful information.

[ajay83 in reply to hippoHH]

My dad was recently diagnosed with NAFLD and NASH and it's really heartbreaking for us but we are trying to stay strong and take care of him 24/7. He's been taking Rifaximine for the past two weeks since he's been having an episode of Hepatic Encephalopathy and he's shown improvement when the medicine started kicking in after like 2 weeks. He show's less confusion more alertness though he's still very tired. My prayers for everyone going through this, keep up the fight. He's also on a Mediterranean diet which I read helps with the liver. Also the gastroenterologist mentioned it's very important to have a good stool everyday. Non black which can be an emergency, regular brown, not in pieces but rather a single pasty one. That way they release the toxins, ammonia that the liver builds up in the stomach, very important.

[bever01]

Many thanks for that - am trying to get in touch with the consultants secretary to ask for these 2 medics or is it as simple as going to our gp. I will certainly be looking up HE as this is all new and so confusing to me and I think I need to understand more so I can deal with it. I posted out of desperation as I couldn't believe I was the only one going through the this and knowing nothing. Can't express how grateful I am for the help and support.

[bever01]

Quick update!! Spoke to my gp - she is going to prescribe lactulose for him to help but mention that his calcium level in his last blood test is very low. This also can cause confusion etc so has agreed to send us to the hospital to have more tests done and we will take it from there. Some progress - feel a little more positive at the moment. The rifaximine (?) can only be prescribed by consultant but she is going to try to sort that out for us. Fingers crossed.

[addiej]

my husband is on the lactulose and rifaxamin and it has helped with the hepatic encephalopthy he has still been having very bad mood swings one minute he loves me the next i am a bitch is he supposed to act this way so it does help some