British Liver Trust
12,438 members6,112 posts

Happy or sad?

So after a recent trip to the GP I asked for a breakdown of what was actually wrong with my liver. Family and freinds told me I had cirrhosis and I took this for gospel as I was in no fit state to take in any information in the hospital or for months after. They where consulting with the Drs asking a lot of questions understandably this was a very stressful time for my family and they where told a lot of things that I wouldn't pull through when I was in ICU to even if I did pull through I wouldn't walk out the hospital. So I'm thinking they must have been so overwhelmed they have just assumed cirrhosis. As I was saying my GP told me what I had was severe alcohol hepatitis now I was initially buzzing that I didn't have cirrhosis but after googling for a few days it looks like it's just as bad as cirrhosis if anybody has any information they can share with me I'd be truly grateful thanks for reading

15 Replies
oldestnewest

Whether you have cirrhosis or alcohol related hepatitis the guidance is the same you need to quit alcohol altogether and start to look after your liver and your health in general. If the alcohol is removed it gives your liver a chance to recover - if you have an inflamed liver/hepatitis rather than full on cirrhosis your liver has a chance of recovery and even with cirrhosis due to alcohol the removal of alcohol can lead to a substantial improvement in the liver.

Have a read at the British Liver Trust information about alcohol and the liver at:- britishlivertrust.org.uk/li...

and also the guidance on living with liver disease and looking after your liver.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

Believe it or not you are in the fortunate position of being able to do something about their liver disease there are others who don't have that option due to their conditions being totally out of their control.

Kick the booze, live better and more healthily and reap the rewards.

Katie

4 likes
Reply

Thankyou I am a year sober and have no intentions of drinking again its extremely difficult at 25 to think I won't be able to have a glass of champagne on my wedding day or a few beers on my stag do but the positives totally outweigh the negative I'd rather be sober and upright then drunk and 6 feet under

4 likes
Reply

I recall reading a paper that said around a third of patients hospitalized for acute alcoholic hep are found to also have previously undiagnosed cirrhosis. This means two thirds do not.

Perhaps feeling cautiously optimistic is in order. Hope you get some good news with your followup studies and imaging.

2 likes
Reply

So perhaps im undiagnosed? I struggle quit a lot with my anxiety which im tackling with exercise but in order to see the liver team I have to return to the hospital my mum died in less than 5 months ago so it's really avoided. I make sure to get my bloods done but as for waiting 3 hours to see the gastroenterologist it's a no go really

Reply

You need to bite the bullet, take someone with you. I never have to wait more then 30 min to see my hepatologist! Don’t forget the nurses are there so if you get too anxious speak to them. Please don’t be an ostrich unless you want to join your mum sooner rather than later. This sounds harsh, but it’s vital for your health that your care is managed by a specialist. Please please go. Good luck

2 likes
Reply

I turn up to the appointments with good intentions but always have a panic attack whilst I'm sitting there my flight or fights kicks in and unfortunately I have a tendency to run away from my problems hence the alcohol abuse for all those years. I just take each appointment as they come who knows maybe my next one I'll be stronger

Reply

I understand that so take someone with you and let the Nurse’s know, they might be able to find somewhere quiet for you or even get you seen more quickly, but they can’t help if you don’t tell them about the problem, just as the receptionist to get you a nurse to speak to.

4 likes
Reply

Hiya James iam in the same boat as to what my condition is I will be asking my specialist nx week for a break down of mine coz I too was told by the doctors that I had cirrhosis in 2012 then last year after my fibro scan was 6.8 they told me it was a fatty liver so I will ask again for a breakdown of my condition an keep you posted thanks James an I hope you keep on trucking mate x

2 likes
Reply

It's a real minefield isn't it the emotional torment of not understanding your diagnosis Can really mess with your head I hope you get the answers you where looking for all the best

4 likes
Reply

Thanks James next week can't come quick enough x

2 likes
Reply

I hope you get all the answers you are looking for, if they haven't told or explained something property then ask for it to be explained to you again. I've had to do that. I'm sure they forget that we need it explained to us in more detail and in layman's terms!! All the best

1 like
Reply

Thanks lynne MA, I will do that just feeling a bit fed up at the moment but being on here is a great help, hope your keeping well. Xx

Reply

Sorry to hear of your liver problem James.

There is often a lot of confusion surrounding liver disease and it's causes. Those unfortunate people who have non-alcohol related liver problems, quit rightly get annoyed as soon as you mention liver problems, people (through their own ignorance) automatically assume you have a drink problem.

I have endured and experienced all the associated conditions relating to Alcohol-related liver disease even up to the point of having a liver transplant. I have therefore first had knowledge of these conditions.I have been trying to reach out and inform others of these conditions and I have put together my own website: taep.eu

Sadly the young of today are blind to the dangers of alcohol, and just see it as being a problem that old people get. Many people might be amazed to learn that back in 2013 children aged 11-years old, one in ten had drunk alcohol in the last week. I have included a video on the website featuring sir Ian Gilmore (professor of hepatology and previous president of the Royal College of Physicians of London): taep.eu/index-b.htm

Total abstinence of alcohol is a must for you. A lot this self-education has to be very much a mind thingy too. You have to tell yourself that for you, alcohol is a poison. And remember, if a true mate knows of your condition they'd stand by and respect that. The person who says, "Go on have a drink, one's not going to kill you". He's no mate, as a true mate would rather kick you from here to next week if a single drink passed your lips. (I mean this metaphorically speaking).

The word "hepatitis" simply means, "of the liver". so, if you have severe alcohol of the liver, I'd want to know to what degree of severity we are talking about. A fibroscan should be done and a consultant hepatologist should assess the images.

Always remember that sometimes a little knowledge can be dangerous thing. And just tell yourself, "This is what's damaged, now what am I going to do to put it right?" It has to be both a mental and a physical and mindful thing.

Good luck I wish you well James and I hope this will help you

Regards

Richard.

3 likes
Reply

Are you by chance in the UK James?

1 like
Reply

Wow I had no idea so all the tests in the hospital where just nothing all the information I have is that I have severe alcohol hepatitis and I take a butt load of medication and have blood tests every 4 months or so and yes I'm from Liverpool thanks for the message

Reply

You may also like...