Is it me or is splitting up liver disease into alcohol induced cirrhosis or drug induced cirrhosis completely counter productive giving the nature of the disease. The first thing you need to do if youre an alcoholic is stop drinking and the stigma or being branded an alcoholic is one of the obstacles most find hard to admit. I was told im the only cirrhosis a to c sufferer in my area by my gp recently which i dont believe as its the 12th biggest killer in uk and fifth in us so its obviously a matter of the patient not going through the whole diagnosing process rather than an actual credible figure. Its probably why some patients feel they,re being fobbed off and ignored sometimes. I THINK IF THEY WANT PATIENTS TO SEEK HELP THEN IT WOULD BE AN EASIER PROPOSITION IF THE ILLNESS WASNT LABELLED THUS. Also patients wouldnt feel like they can tell friends and family without being judged as "bringing it on themselves". Im sure we all know the difference it makes with just a single person to open upto for support but its hard with a badge like that. Alcoholics and drug users are usually looking for an excuse not to seek help so a stigma attached to their illness is bound to have a negative influence on them in my humble opinion at least.
Alcohol induced cirrhosis : Is it me or... - British Liver Trust
British Liver Trust
If i had hiv or aids everyone would be making sure they dont assume im gay in public and its no as big a killer i dont think and everyone is at risk if they drink alcohol so why do the average person on this street know more about aids than maybe a gp does about liver cirrhosis? Same goes for cancer and the treatment is well known for cancer even. Everyone thinks lactulose is for constipation and doesnt make sense if its for cirrhosis because of lack of public knowledge. P.s. The alcohol cirrhosis figures are rising last time i checked so theres no excuse not to do something by govt. i got my ass kissed by a rehab centre just for taking the first step and then stopping completely and apart from one person in the medical arena ive had no supportor empathy whatsoever when trying to get help for anything cirrhosis related and it made me give up. There must be others in the same boat.
So much of what you say resonates with me and though I have a liver complaint I too feel labelling is so convenient but oh so wrong. I have Autoimmune Hepatitus. This is linked to the autoimmune system which can affect every and any organ, including the brain. I have three other incurable diseases too as a result.
My fellow Lupus sufferers share a site like this and the stories of not being believed, ignored and vilified are legion. We get labelled as hyperchondriacs, time wasters, attention seekers which while different from your convenient label nontheless hurt, frustrate and affect how people see us. Even our families get fed up with our never being well and eventually come to the conclusion that it is all in our heads.
It seems to me in my dealings with the No Hope Service that the minimum number of patients with the most simple illnesses is their Holy Grail. I have had medication witheld by GPs though prescribed by consultants and I have a note on my file at the GPs.
What is going on? Whatever happened to interested docs who would solve every issue like the mounties getting their man?
That is why these sites are so important. You have unconditional support. People who believe and stand by us. There is a disease of ignorance indifference arrogance and disinterest which seems to be spreading in this country and it is not borne by the patients but by those who should have our best interests at heart.
Thank God for self education, like minded others and the internet.
Keep plugging away H1ghtower, and I shall too.
My disease still remains unknown and was just called Cryptogenic Liver Cirrhosis. A kind of catchall for anything outside what was otherwise recognised.
Yes I agree with Footygirl , that is how the NHS operate. They work on a numbers game, and if your labelled disease falls outside the big win, of simple cure and large numbers, treatment can be more difficult.
At the end of the day though, cirrhosis is cirrhosis is cirrhosis. The treatments are the same.
I know I found it hard to convince that mine wasn't due to alcohol, and yes I did feel a need to get that right because of what you said H1ghtower, stigma!
It is wrong that the stigma is attached to such a terrible disease but hats off to you for not drinking now, because ironically if anything's going to drive you to drink it's liver disease.
But there are plenty of alcoholics with liver disease who aren't helping themselves, I've seen it when I was in hospital. They are discharged and the nurse says they'll be back in a matter of weeks, I've also seen drinking in the ward!!!! There are some who need intervention for their own good that probably steps all over their human rights.
So I can understand that repeat offenders can become a problem, and unfortunately doesn't reflect well on the rest of us with liver disease.
If youre like most i came across when i used a rehab place to dry out years ago then you dont have anyone to complain or take the authorities to court for inappropriate treatment so its easy for nhs and govt to ignore when abuses happen. I was robbed whilst in care of hundreds of pounds, a couple of phones and a portable dvd player spread over two occassions and both times i reported it without it going on file let alone investigated. The moment my mum questioned anything she was given the red carpet treatment and i was treated better whilst there for the last week. All she spoke to the matron about was me not being able to leave the hospital to get a hair cut (seriously i had been there for 5 weeks thus far) because i pestered her but i knew it would have a positive reaction. The cameras at lgi where in a place where the police could of seen who stole the goods and a security guard told me there was no point checking as the visibility and quality of all recordings in the wards where that bad it was impossable to make out faces and just there as a deterrent.
Who splits liver disease into either alcohol induced cirrhosis or drug induced cirrhosis? The British Liver Trust don't - they list all 21 different liver conditions all of which could cause cirrhosis.
maybe i should take it all back then???
Your understanding and knowledge of some kinds of liver damage are outstanding H1tower, just dont exclude those of us whose livers have been damaged by one or other of the 21 different conditions that damage livers apart from alcohol and drugs
Fair enough, Bolly. I think if i had a non self inflicted condition of the liver i,d probably not want to be tarred with the same brush as someone who drunk themselves into the same situation and would prefer the distinction. Theres always two sides to a story i guess. Thanks for everyones input and information. I,m in the process of trying to get help for the first time since the first year or so i was diagnosed in hospital and the frustrations i encountered seem to make me feel sorry for myself again even though i stopped drinking theres still more i could do like diet etc and seeking a transplant assessment. i havent left the house for 3 years either so my family have been inadvertently shunned although never by a reasoned choice you could understand why they would take it personally when i dont let them in the house illness or not. i cant explain it intelligently myself so how can others understand it.
Hello xxx hope you are ok xxx just going to share my thoughts on what you said above 😘😘😘 my dad was alcoholic and by nature of the disease is 'ignorance/dismissal/excuses' so I believe that those that choose to drink to excess are caught up and don't actually realise they have a problem - hense the 'figures' !!!! I know of many that have got ill and just carried on as if nothing had happened and then either have 'varices/liver failure/heart probs' and just ignored them - if they eventually get admitted to hospital (often too late) and die - they will not be added to statistics of 'death by alcohol' as it will say on death cert 'liver failure/heart failure' etc - the majority of people I have spoken to with cirrhosis have HCV - so alcohol has not come into it (although I always point out when explaining about rob that he doesn't drink alcohol) - I think we are in the bit before the shit hits 😩😩 as people get older all the youngsters that have been 'drinking' freely will start to experience symptoms - and it will become a massive massive problem - I don't feel that there is a stigma to it nowadays as most people enjoy a drink or 5 - I never used to drink at home and since rob has been ill there is always emergency wine available 😆😆 I think nothing of sitting and talking to friends in the garden with a glass of wine xxx it is the way society has made us !!!! Always trying to find a way to relieve our stresses !!! Not just me - all my 40 something friends also xxxx so many crap things going on all over the place and most of us can't find the will to say no or can't be bothered !!!! This is just the beginning 😢😢😢😢😢
Found an interesting quote from a 2009 GM UK journal,
"Alcohol is excluded as a cause of liver damage if the patient has an alcohol intake of less than 2 units per day "
I was told that, although my cirrhosis is Cryptogenic, to get as bad as it is, I would have to have been drinking 2 bottles of vodka a day. My ethanol and ggt tests showed traces of the 3 beers I had some 2 weeks previously so I had a heck of a time persuading the doctor that I wasn't an alcoholic. The prognosis and treatment can be different so I guess it is important to get it right.
Just to add to this I was diagnosed with alcohol cirrhosis. I haven't experienced any negative judgement from any of the medical professionals. I helped myself with the support I received i contacted my local alcohol team, I stopped drinking as soon as I was told i had cirrhosis. In fact the only judgement I encountered was off my own mother she told family members I was ill but not why she said she was protecting me. But I am for spreading the word out and about that this is what alcohol does to you more so as it nearly killed me last year. So I told my family, friends and also strangers, not enough is done to warn people off the dangers that's why the numbers are rising, and to think its legal and getting up there as one of the biggest killers in the modern world
My friend is a nurse and she works on a gastro ward, she see's the same people coming in time after time who are still drinking and as she says and I agree how can you help anyone if they can't help themselves. But they are treated no different than anyone who goes in with cirrhosis no matter what the cause.
Your friend who,s a nurse could use a better way of looking at the "same people coming in over and over again". She sounds like shes given up. She might be better at her job if she sees the same person coming in for a second time coming in as a second chance to help him again and maybe succeed. Its her failure and whether its true or not she should see each person as a challenge. Even if they come back she,ll still be able to go home with her head held high. Its hard to do a job that doesnt get appreciated but if you save someones life and seem to be ignored by the patient it must be unbelievably hard. Thats why she probably started as a nurse to help people but no ones forcing her to stay.. they have to wait for the hospital stay so they have waited months and probably been given loads of obstacles to change their mind about becoming sober whilst waiting before they turn up. Its a matter of perspective but once they,re there whatever happens till they leave in my opinion at least is a reflection on the wards effectiveness. The gastro dept has psychiatrists for HE sufferers so theres no excuse for not knowing which buttons to press if patient resists help if need be. You,re good looking and probably easier to talk to than your average piss stained homeless patient whos never been taught the social niceties you might have dont forget.
They do need the urge to help themselves though, but, their presence at the hospital is proof of that to some degree at least.
Personally I really hate the phrase "Alcoholic" I find it dangerous and wrongly assuming. The phrase "Alcoholic" is an Americanism who just love to be able to label things. A person who is an alcoholic is a person who is totally addicted to alcohol. There are a lot of people out there who have a drink problem but are not alcoholics.
When I psychoanalysed myself I found unbeknown to me at the time, but there was a pattern to my drinking which some out there will obviously be able to relate to. I could go three weeks without a drink, but then drink solidly for three days. It would then take three days to rid my body of the toxins. The I'd go another three weeks without drinking again, and so this would repeat its self month after month, year after year.
I went to a few AA meetings but I was told that if I could go three weeks without a drink, then I wasn't an alcoholic. It was weird, but I felt as if I was a charlatan. So help was denied me.
Having said this, you are sadly right, people with alcohol-related issues are stigmatised and looked upon as being a waster and a down and out drunkard.
A lot of people start to drink for a reason. The first thing is to be totally honest with yourself and identify why you drink in the first place. This isn't a attempt to try and justify why you drink, but to understand the reason behind it. Once you look inside and search yourself you might find the answer. For some it might be because they've experienced something bad in their past. This experience might have been undealt with and just pushed to the back of their subconscious. For this, a completely different type of medicine is required. In order to brake the cycle of alcohol abuse, there's no point in just trying to put a plaster over the problem. You have to treat the cause and not just the symptom. It's not going to be easy, but admitting to yourself that there is a problem is the first step to dealing with the problem.
I hope this makes some sense to some of you and hope also that some can relate to this.