Alcoholic liver disease : Hi everyone... - British Liver Trust

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Alcoholic liver disease

Reza1901 profile image

Hi everyone, anyone out here being diagnosed with cirrhosis of the liver due to excessive alcohol use. I need to talk to someone going through the same as i do please

22 Replies

You’re in the right place. Although I do not have liver disease many people here do and you will be welcomed here.

Hi Reza

I was diagnosed with Cirrhosis due to alcohol misuse in December 2018. My liver was decompensated which meant it was not going to get better and I also had recurring fluid which needed to be drained.

It didn’t really come as a shock, but I had been completely in denial for a long time. Now you have a diagnosis do you feel you can move forward yet? Or do you need support at the moment? Or do you need to just ask loads of questions?

There are loads of people here who can help and there is a great deal of helpful information on the website and a support line you can call during the week!

Please reply if you feel I can help.

Stay safe🙏

Lesley

From reading your reply which has now vanished where you describe brothers situation. Sadly it sounds like he's is in a very bad place with his health. He is showing all the signs of very advanced decompensated cirrhosis - with what sounds like pruritis (jaundice itch), ascites and oedema, bleeds, hepatic encephalopathy and more.

Literally his only hope would be medical intervention and detox otherwise I am very sad to say his situation is rather bleak which I think you know only too well.

His liver is at absolute failure point.

You might find the British Liver Trust pages on alcohol induced liver disease and cirrhosis a useful read.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

Look after yourself in all this because sadly without him accepting medical help you make have to face a sad end for your brother.

Thoughts with you, Katie

Hi, im sorry for removing the post, it felt like i was gossiping about him since this is the first time speeking to someone about him, tho i knew someone has read it, my heart is broken, really. I sometimes wish it is just a nightmare and that it would all turn back to how he was😭😭 he is 7 years older than me. Thank you so very much for your truth. 😭 Take care.

Artemis61 profile image
Artemis61 in reply to Reza1901

Hi Reza, my brother has decompensated cirrhosis and alcoholic hepatitis. I have messaged you x

AyrshireK profile image
AyrshireK in reply to Reza1901

You aren't gossiping about him Reza, you are seeking information that might help him and you in the long run. Lots of us here are supporting (and typing about) loved ones - in my case it's my hubby who has the liver issues.

We are here to offer support, a safe place to vent and as none of us are ever likely to meet you or your brother we can chat away safely.

Katie

Carer6 profile image
Carer6 in reply to Reza1901

Hi Reza. I lost my younger brother to Cirrhosis. Just be there for him as much as you can.

The hospital my brother was in refused him pain relief. They said it might kill him - through years I said he's dying and was in so much pain. They refused still.

Watch out for your brother and do whatever it takes for him to retain his dignity. Sending you so much love 💔

Hi Reza. Many great people on this forum and they all made it very easy for me to understand and make sense of what was going on. I was diagnosed a while ago after decades of debauchery and excess. Although i do not show any severe symptoms other than fatigue at times i have been through every possible thought scenario possible.

Happy to chat over messenger on here if you want? it will help you rationalise to a degree what's happening and perhaps make some sense of the language and terminology being used?

Hi XenomOrph

Just read your post. Hope you dont mind me messaging after all this time, you may not see it. I have not been diagnosed with liver disease cos not been to doctors. I am terrified I have cirrhosis. I have been suffering with health anxieties and been checking for all ailments, cirrhosis included. have been a drinker for many years but I feel perfectly well and the only symptom I can find is a very tiny spider angioma on my face. (I have to look through a magnifying mirror to see it) I don't know if this has been there for years because i've not looked before.You mentioned you had been through every scenario possible which is what I feel I am doing now. I just wondered if you had any similar symptoms. Would I not feel ill in some way if I had cirrhosis. Thank you

Hello, no problem. I'll try and answer what i can but each and every word i write below should be preceded with getting to talk to a doctor or professional ASAP. No matter how well you feel; as you point out this is playing with your head and by seeing a doc you will know EXACTLY where you stand.

For me i didn't feel too unwell i suppose until i felt really unwell, if that makes sense? The issue with the conditions we are talking about are many but mostly can be attributed to things creeping up on you and before you know it you are in hospital, jaundiced and the only thing going through your mind will be "why didn't i act sooer". Do it, and do it now.

I didn't have any visible symptoms of cirrhosis when first diagnosed, only when i thought i had it all under conrol and drank again did my body react and remind me exactly of how serious this can be if you don't act. I was then rushed into hospital, bright yellow and told the chances of me making it are 50%.

What i will say is that even if you are diagnosed with Cirrhosis it is not generally a rapid decline and death isn't always waiting round the corner. If we think about mortality in general then we can all say we are headed that way; noone gets out of this alive!

For me it's damage control and trying to keep my head in check. It's not easy. I hope by now you've stopped drinking?

I leaned out of the car the other day and got a massive spike in pain in my right ribs, i am still not 100% sure that I haven't done more damage to my liver as it felt as if i had squeezed it through my ribs but the doctor tells me that i've done damage to the soft tissue connecting my ribs to the various parts of my core skeletal structure.

To re-iterate. DO NOT fuck around with this. Apologies for the profanity but it's as black and white as that. Get yourself checked out and be prepared for the worst, hope for the best etc. Your state of mind will destroy you if you don't get some answers.

Be honest, be polite and trust that these guys have heard it all. There is nowhere to hide and the truth, even if it's not what you want to hear, will set you free.

Cirrhosis is manageable, there are symptoms such as fatigue, feeling the cold a little more, depression at the early stages but EVERYONE IS DIFFERENT.

Take someone with you if you can. I've no idea where you are in the UK, world but if you're within an hour of central Glasgow then i'll come with you; my family and my wife were extremely supportive and helpful even after all the lies i told them.

Thank you so much for your reply. I really appreciate you taking the time to respond. I have stopped drinking and will make an appointment to see my doctor. Thank you so much for the kind offer to come with me but unfortunately I live at the other end of the country. I do hope that you continue with your good health and wish you all the very best in the future. Many Thanks.

Good luck. Let us know how you get on.

will do. Thank you

Me too not sure how I can help but we seem pretty much in the same boat. My treatment stopped because of the virus thing but tbh scared to ask too many questions for fear of the answers ♥️

Lam1e profile image
Lam1e in reply to Violet74

Really sorry your treatment has stopped, and I am sure you must be worried😞 as you can see from my reply to Reza that’s part of my story.

Feel free to get in touch if you think it will help, and I am sure you would get really good support from the helpline👍

Stay safe.

Lesley🤗

Violet74 profile image
Violet74 in reply to Lam1e

Thanks I just feel a bit out on my own haven't a clue what's happening. Feel relatively good well better than I was before diagnosed. Stopping the drinking was the say bit for me. Do suffer with a lot of joint pain and my spleen gets huge, blood cells low still. Eat well on Furosmide and Spironolactone no big effects seem to be working we.. Had bloods kidney function fine. They were talking about the camera down the throat thing which Ininow I won't be able to do. Seriously I can't. Waiting on them bringing it up again then will see what they say. Can't be awake no way. Terrified. Husband says I look great, do feel OK hair not growing still but a bit thicker. Just sort of scared and read stuff on here about folks dying all the time. ☹️ Thanks for getting back to me much appreciated. X

Lam1e profile image
Lam1e in reply to Violet74

Sounds like you are doing really well👍 Don’t be afraid we are a tough bunch to get rid of and the hepatology teams are amazing, though I treated them like the enemy at first, i now get on with them👍

The diuretics didn’t work for me and caused problems with my kidneys and I had to have drains, but they were fine! I had an endoscopy and a friend (who does endoscopes) advised to have the throat spray and sedation and that worked a treat, didn’t feel a thing, if you have it as an outpatient then you need to have someone with you! They will explain everything and if you don’t feel you can do it they won’t force you!

My motto is “nothing about me without me”

and I think sometimes the Dr’s just need to slow dow a bit and speak to you so you understand and I have also asked the nurses to explain things to me! My hair is definitely thinner, so at the moment I am not washing and conditioning if too much and leaving it to dry naturally. My nails were in pretty poor condition, but But have started to Look better than they have in about 5 years👍

I am 6 months post transplant now, that was the best option for me, but we are all different! The advice on here is so good and I also am part of a local buddy forum which is just getting off the ground! Is there perhaps one in your local area ?

Stay safe and well.🙏

Lesley🤗

Sorry about the crazy spell check nonsense

I was exactly the same and it was a horrendous journey after being rejected for a transplant and pretty close to death, however I am now over 4 years without alcohol and 2 years post transplant and never felt better physically and mentally, so never give up.

Abrielle profile image
Abrielle in reply to A9KSY

Hi, I was just reading through and just wanted to know why you were rejected a transplant before?

Trust9 profile image
Trust9Administrator

Good afternoon Reza1901,

As you can see, there is a lot of support to be had here.

You can also call the nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm if you would like to speak with the nurse specialists.

Best wishes,

Trust9

Reza1901 profile image
Reza1901 in reply to Trust9

Hi trust9, I am only seeing this message now, thank you so much i will do so.

Blessings,

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