I have cirrhosis. AMA!

[Ohdearnamechange]

Hi! I have cirrhosis. It's basically end stage so I have a couple of years - unfortunately they caught it a bit late for anything to be done for it.

Just closing off some possible questions - no I haven't drunk more than most people I know. People's bodies react differently apparently. There has been a strong element of self medication/self destructiveness which is quite hard to explain to people (I also have BPD and PTSD). I feel massive guilt that I'm putting my family through this, and would really like to give any support or advice to anyone who has worries - so many people don't seek help until it's too late.

My oldest sister (51) was diagnosed with decompensated cirrhosis three years ago- she is going to die soon and has bruising, bleeding, breathlessness, ascites and is jaundiced. She hasn't eaten properly for years as she cannot swallow but I think she continued to drink vodka. Now, she is in awful pain, blacks out and sleeps most of the day. Her life is chaotic as she keeps making bizarre decisions and drives everyone away. Fortunately, she had money. The doctors and nurses are exceptional and bring her back from acute problems to being in a more stable state and then she discharges herself from hospital only to have to be rushed to A and E soon enough. They are draining litres of fluid from her pleural cavity and ascites every few days.

My Dad has let her live with him when she discharges herself- he is keeping her isolated and keeping things secret to huge distress of other family members. I think he is scared she will just disappear.

It is all very distressing. I completely feel for you having to deal with this.

I struggled with alcohol abuse in my 20s (binge drinking, black outs, destroyed my early career). I still drink occasionally knowing I could fall into alcoholism without much effort. Probably done a lot of damage to myself already. I don't blame alcoholics as I understand the desire to drink knowing the consequences. Despite never talking about it, my Grandma died of cirrhosis, my mother of liver cancer, my sisters will both die of cirrhosis. My older sister was so intelligent and beautiful and had an incredible career but wine and vodka has wrecked everything.

Look after yourself. However, it is so hard to warn people. The drinking culture is too strong and alcohol is too available.

Im so sorry . This sounds a very distressing situation for you all💕

Just wanted to check how have you been doing? I am here reading these as I am worried about an ache where my liver is. Just ordered a test from Thiva.

Thank you everyone for checking in and I'm so sorry for people who have suffered this themselves or within their family or friends.

I'm only just back from Thailand. The rehab place was amazing. I had a minor relapse on the way back (5 days of transit spent in various ferries, coaches, airports and flights with flu tipped me over the edge tbh) but I'm back on track now and the rehab definitely helped, particularly with my mental health. Onwards and upwards x

@ece123 please do get a test. I say this to everyone. I don't have an ache around my liver but it's a fairly standard symptom of some form of liver issue. At least if you get a test you may be reassured, it could be fatty liver which is generally quite easily fixed. And if it is something more serious then at least you know and can start managing it. Fingers crossed for you x

That is great to hear the rehab was helpful and things moving into the right direction. Just waiting for my test to arrive. Sending love Xxx

Earlier you said all the damage was done in your 20s???

See attached……these two posts by OP directly contradict each other? I’m confused…….

I'm so glad for you OP - I posted a while back on your thread. I really wish I had known about Thailand for my friend who sadly died in 2023. I think she would have found something like that hugely useful. Like you, her consultant basically gave her a life sentence and she decided to take matters into her own hands as a direct result. I miss her so much, but am gladdened to hear you have managed to come through it and get help; a new life awaits!

Just popping in to say I have alcoholic peripheral neuropathy. I'm in my 40's.

I'd like to come back later and ask a few questions if that's okay?

Keep strong X

OK. The damage was largely done between the ages of 16 (when I left home) and 23 (when I met my controlling and abusive ex).

For the next decade I did not drink because my ex did not allow me a social life.

When I finally ended things with my ex I went off the rails a bit (I had C-PTSD and BPD and was trying to get over the trauma of that relationship through self medication) but this was only a few years ago. I then met my husband who is a full on alcoholic (as in cracking his first can at 7am) which did not exactly help things, but I have been sober now other than a couple of relapses which lasted a few days at most for over two years.

Obviously it's impossible to know when the damage was done for sure but I can't see how two years of drinking (and not spirits etc) could cause this without underlying damage which I assume was caused in my teens/early 20s.

I realise I started a thread in AMA but am not appreciating the troll hunting. This is my fucking life.

Of course x

Thank you. I'm incredibly lucky to have been able to go to this place as mental health (and it is a mental health issue) support in the NHS is pretty dire.

I'm so sorry about your friend x

Hello @Ohdearnamechange how are you doing now?

I lost a close family member to alcoholism last year, it’s a complex disease. You’ve managed to stop drinking which is a huge achievement….have you started self medicating in other ways, or are you managing to live with the issues ?

Sorry to hear OP. My dad was the same, just an average drinker. On his ward were the same, just average blokes who enjoyed a pint or two after work.

I also have liver issues despite being teetotal. Do you find theres much judgement from people who must assume you are an alcoholic?

Hope your still doing good it’s an amazing thing your doing trying to warn People of the risks of alcohol…I have been a heavy binge drinker for 22 years and I mean heavy just went for bloods and my gamma gt has came back borderline but says no further action going to get an appointment to discuss it with them