Diet and supplements

[Marydel63]

Just curious what type of diet do you follow and what supplement do you take. I see people mention thistle. I am stage 4

[Hidden]

Vegetarian low fat diet.I was also told not to take milk thistle by consultant .He said he had people on his books that have taken it and it has made their liver worse.

[Marydel63 in reply to Hidden]

Thank you!

[AyrshireK]

It is best not to take any additional supplements without getting the advice of your own medical team. Some supplements and herbal remedies are not thoroughly tested and can be contraindicatory for someone with liver damage.

As regards diet then this is very much an individual needs thing, what is good for one person is not good for another dependent on the degree of liver disease, the back ground to the liver disease etc. Some people will be eating for the 'looking after your liver stage' others will be on high protein, high carbohydrate diets due to muscle wastage and malnutrition.

I would suggest you have a look at the British Liver Trust page on Diet & Liver Disease at:- britishlivertrust.org.uk/li...

In addition, next time you see your liver specialist request an appointment with a dietician who should do a full work up as to your individual dietary needs and give dietary information to suit.

My hubby for example has cirrhosis, was 8 stone soaking wet when we first went to clinic and was deemed malnourished and suffering muscle wastage. He was put on the high protein, high carb diet. Snacking frequently so as not to go too long between meals as his body was using his muscle for fuel. Also eating a carb rich supper. He was also put on Ensure Supplementary Drinks on prescription to help build him up too. Not a diet plan suitable for all. He is now maintaining at 11 stone and has regained muscle mass & is seen as a bit of a miracle case as regards weight gain with so much liver damage.

All the best to you,

Katie

[Marydel63 in reply to AyrshireK]

Thank you !!!

[RHGB]

To be honest, the medical profession are not really sure what you should and should not be eating and every individual is different. The main thing is to stay away from takeaways, and boxed food that you microwave/oven and to make your own food.

When I came out of hospital, I had an appointment with the hospital acute dietician (actually many appointments, for 18 months) and she went through everything I should eat, from first thing in the morning to having a snack just before I went to bed to give my liver something to keep it going through the night.

So I said to her, is it wrong then to eat low quality food, at 8:00am, 12:00pm and 5:00pm each day and nothing outside of that? She told me no, that was completely the wrong thing to do. I then asked her, why, for the last two months in hospital, after liver failure and an acute cerebral haemorrhage, had I been fed slop (which I often refused, which rather annoyed the nurses) religiously at set times of the day and no early morning snack (we were given Obs observations - bp, blood oxygen and temps tests every four hours) despite being woken up just before 6:00am as well as 2:00am and no late night snack, she didn't have a reply.

Last year, I was in A&E overnight because of syncope (blackouts) and I told them I hadn't eaten that night, because I had blacked out (for the second time that night) whilst taking the first mouthful of my dinner, choking on it in the process. Now, it you read the literature in hospital, they make a big song and dance about not coming to see you during meal times (which are rigidly set) and letting patients have their meal in peace.

So what did these two doctors do, having read my records and being well aware of my condition (the female doctor had come during the night and started doing the ascites test on me, to which I said, I know what you are doing, get off, I don't have ascites) came to see me at breakfast time and I saw the trolley leaving the ward and I had to say to them, excuse me, but I didn't eat last night, so I haven't eaten since Friday lunchtime and I am now somewhat hungry and my condition says I shouldn't go too long without food, so could you call the trolley back and let me have something to eat.

So I take what doctors say with a pinch of salt. Just try to eat healthily, a bit of fruit and salad where you can and make stuff fresh.

[Marydel63 in reply to RHGB]

Wow, thanks for info

[Hidden]

Hi,

The British Liver Trust do have a publication 'Diet and liver disease' that you may find useful to read, there is a section on specific liver conditions;

britishlivertrust.org.uk/wp...

However, there are some special considerations that people with liver disease may need to make in their diet to stay nutritionally well and to help to manage their condition. Some of these are specific to certain liver diseases, others relate to how advanced the liver disease is.

It would therefore be advisable to obtain specialist dietary advice from your liver specialist in the first instance, they can also refer you on to a hospital registered dietician for more specific guidance.

With regards to the use of Milk Thistle, The British Liver Trust does not recommend the use of any homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and can actually damage the liver and lead to severe illness.

More research needs to be done on the use and safety of such remedies and therapies.

Homeopathic remedies are unregulated in the UK and concentrations of active ingredients vary by brand purchased. If you are considering using complementary or alternative remedies &/or therapies please always discuss this with your liver doctor first.

Please also see the information on our website here:

britishlivertrust.org.uk/li...

We do hope that is helpful,

Warm wishes,

Rebecca

[Marydel63 in reply to Hidden]

Hi thank you , I will look into it, so much to learn!

[Feras in reply to Hidden]

Sorry to hear that about herbs and supplements. Cause Medical doctors don't make their living treating liver diseases with these products and same goes for hospitals. From my own experience I found out taking Alpha lipoic acid and eating grounded milk thistle seeds for 6 months as well as changing some eating and drinking habits improved all liver test results.

[W_larks in reply to Hidden]

Thank you !! I have PBC 4 yrs /AIH overlap 1 year . I've been on urso for pbc and azathioprine and prednisone for aih. My weight has gone through the roof 😪 i have awful tummy troubles too . I never eat high fat or sugar and I'm a vegetarian although not very good at lunches and dinners . I have downloaded this and will have a good read up xx

[Hidden in reply to W_larks]

This original post is 3 years old and we are now in the process of updating this publication so we would suggest that you do discuss your diet with your hepatologist, and they can possibly refer you to a hopsital registered dietitan for a specific plan.

Best wishes.

[Dort1234]

How true is that I was in hospital for two months with cirrohisis .what brought me there was ascities I had two drains over that time and when I was discharged I was still very big on stomach and after a few weeks of eating when I want and low salt ot disappeared on own with diuretics also. I was in stronger diuretics in hospital but belly would go down and I know the food there was dowsed in salt I could barely eat anyway and would sometimes only have the soup my God it was full of salt. So eating healthy in hospital isn't easy.

[Marydel63 in reply to Dort1234]

Wow scary

[RHGB in reply to Dort1234]

The big thing for me, that compounded it, was that I had a brain haemorrhage at the same time, so I could not walk. I was in the UHCW (Cov) after being transferred from Warwick. They had a large food area on the ground floor, if I could have walked there, I would have eaten every night down there.

I too had the soup, I had to order a main and a desert for lunch and dinner, so every day I put, vegetable soup and a yoghurt pot for my next day meals. Every day they filled in my patient diet sheet and at no time did someone say, that is not much for a big guy. I am 6'2"+ and built like a rugby player, I was overweight when I went in, about 18st, I should be about 16st, I was under 14st when I left. They used to weigh me once a week and the weight was dropping off (I did have an ascites drain of 10 litres, which meant a 10Kg loss), but nobody came to me and said, we're a bit worried about your weight loss and eating habits.

If you want a laugh, read the first leaflet I was given by my acute dietician (I actually liked her, she was a nice person and did actually give me some good tips).

General warning; If you're struggling to lose weight, don't read this, it will make you cry.

swft.nhs.uk/application/fil...

[Dort1234 in reply to RHGB]

I read that sheet. Must be a wind up. I must also say the day I left the hospital they have me foods to avoid with cirrohsis and ideas what and how to eat with liver problems. wish theyg ave me it when admitted not two months of eating stews loaded with salt. I too couldn't get to canteen as I lost my walk staggering all over the place and rapid weight loss and mussel and not a bit of strengh. That was Xmas and now walking fine but the staggering and balance problem still there and praying it will go away..

[RHGB in reply to Dort1234]

That is not a wind up, that is the sheet given to me, by the hospital dietician at Warwick hospital. I came out of hospital in June 2014, you will see that leaflet is from 2013 - 2016. The link is an NHS link.

The SWFT stands for South Warwickshire Foundation Trust.

[Dort1234 in reply to RHGB]

Well if anyone followed that diet they would be back in hospital it's got heart attack written all over it. creams and butter. The best one is to drink energy drinks that's a danger in its self..

[catrinamakes]

First time I was diagnosed with cirrhosis andthe hospital stay was 4 months ,my high weight was the ascites , then i went down under 7 stone with muscle wastage, and i was tube fed salford royle was great, they sent the chef up to me and planned meals I would like, sadly i spent 2years out of 5 hospitalized with malnutrition etc, so now i am tube fed which keeps my weight up and gives me everything I need, plus 26 tablets aday for my liver etc . I have a home visit from the dietitian, now i have great support from the hospital dietitian who I have seen the same one for the last 5 year. I am now at a weight that everyone is happy with. I'm still tube fed as I carnt eat enough calories to substain my weight as its difficult when I never feel hungry. So it is different for everyone, but I would never take a supplement without medical advice.

[Dort1234 in reply to catrinamakes]

That was some spell in hospital catrinamakes. You were lucky on the choice of food. If I had that much knowledge of what I know now I would of kicked up a fuss. Good for you reaching the weight your happy with. I too went to skin and bone after ascities but am at the weight I want to be now.

[RHGB in reply to Dort1234]

Same here, but how great is it that you can fit into every bit of clothing in your wardrobe, with inches to spare?

[Dort1234 in reply to RHGB]

I think I went a little over the top in weight I gained over two stone in four months but a bit went on my waist so not happy with that. I am actually considering the might be fluid there. will need to get it checked out.

[Dldtx]

First you should seek out a dietitian that is experienced with your condition and will be better suited to meet your needs. For me it is a small plate (like a dinner salad size) of everything. In the morning I have fruit and maybe 3/4 of my needed protein ( that can include meats or eggs just whatever) then I snack on basically anything that doesn't have sodium and not much sugar if any, for lunch I might eat the rest of my protein like chicken or fish, dinner this past week has been a lovely garden salad with a touch of dressing and a wonderfully prepared baked potato. So for me it's no red meats,no salt, limited protein, fruits , limited fluids, if it looks good or smells great and you once loved you can't have it.

Good luck

Dld

[Cathy-anne in reply to Dldtx]

Hi meet with a dietician definitely.I take milk thistle twice a day.But if you buy it only get the 6 grams one.i use blackmores.I was sold a bottle from a health food store and was told the high dose was better.In our condition it's definitely not.It tried to detox my liver.The specialist at the Austin hospital in Melbourne told me to follow the FOOD MAP DIET.Very important is NO SALT NO GARLIC NO ONIONS.I personally find water with some grated ginger and ginger that is sweet you find it in packets gives me the relief of reflux and is very cleansing and hydrating.I also take vitamin D and Osteo guard for bones.See a Dietician asap.Your body is under so much stress you have to eat small meals constantly.Just what I have been advised by specialist.your liver specialist should of advised you to do this.But I am a big lover of milk thistle.With out it I am much worse.I am stage 4 with significant liver damage.But have had hep c through a blood transfusion over 30 years ago.milk thistle and ginger are my best friends.good luck

[Dort1234 in reply to Cathy-anne]

I am very surprised at you saying no garlic or onions I'm eating them raw for the sake of it everytime I go in the kitchen. I read they were a very good antiflamatary for the liver...

[bobbycat in reply to Dort1234]

Yes I also eat onion pieces and garlic..was never told not to.

[Marydel63]

Hi I have a food dehydrater so when my greens any veggies begin to “go bad” I dehydrate them and then can add them to anything !!

[Marydel63]

Thanks

[Hidden]

Can I remind all forum members to discuss any specific dietary recommendations with their own medical team or dietitian. I have also included a link to our information regarding supplements.

britishlivertrust.org.uk/in...

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