Which things we will need to always remember to keep your liver healthy:

[Averybeck]

Which things we will need to always remember to keep your liver healthy?

[AyrshireK]

The British Liver Trust website is amazing for such details. They have a page dedicated to looking after your liver and an online test to see how or if you might be at risk of liver complications.

That page is at :- britishlivertrust.org.uk/li...

They also have numerous pages and downloadable leaflets on all the major liver diseases and conditions plus how to look after yourself if you do indeed find yourself living with a liver condition.

The British Liver Trust Website is at:- britishlivertrust.org.uk/

Each liver condition is different so what is good for one might not be advisable for another however the pages above should give you some really good guidance.

All the best, Katie x

[Mama41]

I found the British liver trust not very accurate on my liver disease. I contacted them to see if they would amend it but they weren't interested.

It's a shame because I would imagine it's one of the first websites people in UK access when they are first diagnosed.

Hopefully they are more accurate on other liver diseases.

[MisterX in reply to Mama41]

Hope you don't mind my asking but what is your liver disease and what part of their info is incorrect?

[Mama41 in reply to MisterX]

Hi MisterX. I have Fibrolamellar

Hepatocellular Carcinoma.

It is very rare with less than 200 cases a year worldwide. But it would be nice if they could give it more than 2 sentences on the website.

The second sentence states that 'it is usually well contained and can be removed with surgery'. This is unfortunately not true. It does spread to other organs and in many cases cannot be surgically removed.

It also has a very high reoccurance rate.

Like I said it would be nice if they gave it a few more sentences

[RodeoJoe in reply to Mama41]

It's not unusual that the rarer the disease the less information, support, research etc.

But looking after your liver through diet and life style to my knowledge is a constant. As are most of the symptoms associated with liver disease.

So even if the description is not 100% there's probably a wealth of information on the web site. Although I agree if the information is incorrect perhaps it should be updated.

[carmik in reply to Mama41]

I was interested to see this post.

My husband had a transplant and they didn't know until they removed it that it contained over ten Hepatocellular Carcinomas.

There was no mention of the word Fibromellar so I am not sure whether it is the same type of tumour. He is just coming up for 4 years post transplant and so far , thank god, no other tumours have appeared any where else.

Good LUck

[Mama41 in reply to carmik]

I would hope the surgeons would have told you if it was fibrolamellar. As it has almost a 60% reoccurance rate.

Glad to hear he's doing so well.

[Inverness in reply to Mama41]

Hi

What liver disease do you have.

[Inverness in reply to Inverness]

Hi sorry only just seen replays hope all goes well.

[GavBelfast]

I was going to say always drink alcohol within the government's "safe" guidelines, but, yesterday, one of the UK's health authorities came out and said that NO amount of alcohol is safe - though, admittedly, they were specifically focusing on dementia in later life, rather than the liver.

[Marine87]

Personally I tested the liver and gallbladder cleansing to take care of my liver. I found the description of this natural process on iraisemyhealth.info

Around a hundred positive testimonials are published on this site and you can find pictures of expelled gallstones, that's very interesting!

[MisterX in reply to Marine87]

There's not really any such thing as liver and gallbladder "cleansing".

What you eat and drink gets digested and dealt with in the same way as everything else as far as the liver is concerned - and whilst some things can be toxic when they hit the liver there are no substances that I'm aware of that "clean" the liver - and I can't honestly say I have any idea what would make a liver cell "unclean" or in need of "cleaning".

[buddymac48 in reply to Marine87]

I wish it was that easy to cleanse the liver and gallbladder. With all respect I am sure we would be told by the medical profession if it was that easy, be careful what you read as some advice in books and websites can be harmful.

[Hidden in reply to Marine87]

Sounds downright dangerous to me, liver disease is often accompanied by weight loss. Chucking shed load's of Epsom salts at the digestive system ain't gonna help maintain a safe weight, in fact the reverse.

If it were so simple to keep the digestive system including the live in good nick and save billions of £ € and and a lot of suffering etc why aren't the medic's recommending it?

[gfmum1]

Sorry, but I also haven't found the British Liver Trust - or any of the medical profession either, to be honest! - very helpful for my husband's condition (liver abscesses). Where is the advice for what to do when the organ which is supposed to fight infection is itself infected?

The only source of help and advice we have had has been from other kind members of this forum.

[Bolly]

Abscesses can appear in various parts of the body caused by bacteria. There is even a medical term for those found between the buttocks (hmm, is there a buttock doctor in the house 😉). So most likely they come within the remit of general medicine rather than hepatology? Hence the lack of specific information on the BLT site perhaps. I hope your husbands recovery is progressing, it must have been worrying to have him so unwell with nobody able to give you much information.

I agree the small amount of text space given to Fibrolamellar is disappointing (I did point it out to the editors at the time of publication of the revised leaflet, hint hint editorial team lol) but then again there was a limit to the space available. Some of the more recent treatment techniques are not there either. A good friend of mine diagnosed with Fibrolamellar in a her 20s at the same time I was diagnosed with HCC is alive, well and living life to the full 5 years later with no sign of recurrence, so there are success stories out there.

[gfmum1 in reply to Bolly]

Abscesses do occur anywhere in the body but most are not life-threatening, unlike liver abscesses which are treated by hepatologists (not general medicine) presumably because of the damage they do to the liver (my husband has numerous holes in his!) Unfortunately my husband's recovery has pretty much stalled, we're just hoping that his GP can get him some help from somewhere.

I have a great deal of sympathy for Mama41 - having a rare illness makes it MORE important that information is available because the more common illnesses often have support groups to turn to whereas the rarer illnesses don't.

[Mama41 in reply to gfmum1]

We have a facebook group that is very active. It was formed after 3 of us met on another website and decided it would be easier to chat on facebook.

We have over 500 members now (mostly family and friends of fibrolamellar patients) one of the members is a research professor who is currently working on finding treatments/a cure.

Like I said before it would be nice if the British liver trust gave us more than 2 sentences on their website.

In the last 6 months 2 teenage girls from England have passed away from this type of Cancer.

[Bolly]

There is a US foundation fibrofoundation.org/underst..., but you are right, not much up to date info on UK support forums. Macmillan cancer charity have a patient support forum as do Cancer Research - not cancer type specific but people have posted on the Macmillan forum about Fibrolamellar so always worth checking cancer support forums for liver cancer types.

fibroregistry.org

facebook.com/Fibromellaraus...

facebook.com/The-Fibrolamel...