Hello. Its took me a few weeks to post as im still trying to get my head round this diagnosis and now ready to tell my story as read everyones and think thats how i feel. Its good not to feel alone. My journey all started with elevated billirubin. I have always had issues with it since i was in my teens, im now 44.
In Feb 24 my billirubin spiked to 44 (normal range 5-21). I was told to get another blood test in 3 weeks and it stayed same so doc referred me to gastroentology at my local hospital.
I went for an ultrasound in may 24 which showed mild fatty liver no concerns they said but my billirubin was showing as producing direct/indirect billirubin so my case was "fascinating and unusual".
I was sent for a fibroscan in sept 24.
In nov 24 i had an app with my gastro doc who sat me down and said bad news, you have stage 4 cirrohsis and grade 3 steatosis of the liver due to me being overweight, non alcohol related. Possible varrices were mentioned too as well as what could happen if they rupture.
If i lose weight, eat healthy i might be ok, any questions, see you later..
When he was telling me this i went into complete shock.
Told me the elevated billirubin was guilberts syndrome and that was it.
I left feeling like i was going to die.
I went into panic mode telling my husband and family as i didnt know what i was going to do.
The next day i took the day off work, i made an appmnt with my GP who told me she didnt have any info from hospital so couldnt tell me anything but they did give me the gastro admin team number so i called them who said i was on a waiting list for endoscopy, ultrasound and biopsy once i have all these done ill see a gastro doc again.
I spoke to the Liver Trust too and still do when im confused about stuff.
I had my ultrasound last friday and now get those yearly. I askedm my doc to have bloods done to see if wht i was doing was working and LFT Tests normal and billirubin is now 34. Ive to ask for bloods every 3 months.
Since then im taking it daily. I have symptoms of itching and some right side ocassional pain. Ive overhauled my diet, only eat chicken, turkey and fish for dinners.
I have lost 1 stone 5 pounds since 1st december. Im excercising daily and now on the nhs weight management programme. I was at a BLT support group on Wednesday too.
Some days i feel great, others im like why me. I hate having this disease and i feel quite lonely and isolated with it but my husband is fab and supportive.
I try to socialise although find that part hard especially the alcohol part but i wasnt a huge drinker just has to be this way.
I hope im doing all the right things. Just hope that im ok and can do this.
Thanks
Kerry
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Kerry008
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Hi Kerry, your diet may be too restrictive - you still need to eat healthily but you also still need all your food groups (especially with cirrhosis) since your body will start to consume your muscles before it will fat. You must ask to see a dietician to get advice on how best to manage your various conditions. You don't want to pile more fat on your liver which will happen in 'starvation' type scenarios.
BLT has good information on NAFLD - benefits of a Mediterranean diet and other guidance on tackling NAFLD with healthy diet and exercise.
Thanks for your reply. I eating lots of fruit and veg and eating healthier. I did ask for a dietician via nhs but im not elegible apparently. I have reduced salt and sugar. Doc told me no red meat or pork with cirrohsis is that wrong? Im also hvng pea protein shakes
The only issue with red meat is it can contribute to more ammonia build up and potentially lead to Hepatic Encephalopathy symptoms - my hubby was never told to eliminate red meat from his diet. Protein and carbs are hugely important in cirrhosis.
As Katie said - well-rounded, healthy nutrition is key.
Katie mentioned "your body will start to consume your muscles before it will fat". That is definitely "a thing" - as I have personally experienced as a patient.
Before my liver diagnosis in recent months; for over 30 years: I jumped through every (well meaning but misguided) different hoop of "do this / no, do that" expressed to me by different Clinicians (with generally; frustrating, unhelpful and sometimes detrimental outcomes).
When I started to get a bit more insistent with my GP Practice - that we must still be missing the root cause and suitable nutrition applicable to "me"; was when I noticed e.g.:
- my shoulder muscles really whinged when simply hanging up the laundry to dry (I used to swim a lot in my youth, and double-dig over my allotment as an older adult and have a good shoulder structure - so this felt really odd),
- my thigh muscles started objecting as I went to stand up from an armchair (walking, gardening and Tai Chi, I use stairs in preference over escalators / lifts / elevators - have always been "my exercise things" - so that was unexpected),
- my (usually strong) hands suddenly just could not open standard glass jar lids (I am a practical person with little need to ask others to open jars for me).
I am not in the age range where adaptions to perform such tasks might have become more expected. Something was physically wrong (for me) and my "diet and lifestyle guidance" was not supporting my improvement.
Across the years, I have continued to struggle with cumulative stubborn abdominal weight gain (BMI ditto too) ...but have a slim face, neck, arms and legs (despite all the diligent hoop-jumping-through prior diet "advice" - because, as I only recently understand; it was previously incorrect advice - for my body and underlying conditions.
Smoking and drinking alcohol have never been part of my life story (despite being relentlessly grilled on both of these fronts ...by all and any Clinician I encountered - year on year - ad nauseam. (Can you hear the teeth grinding on my part?). Even if those things had of been on my radar - people should be supportive of change efforts - rather than badgering folks!
Since stepping away from the generic "do this, no do that" iterative guidance of the last three decades - and now concentrating specifically upon the liver health supportive - more well-balanced - good nutrition (tailored for my body and underlying conditions) as per my Hepatology Clinic advice: l have managed to lose 5% of body weight in recent months - a rare experience - and yet, I am also feeling improved muscle tone slowly returning too. That is important; as you need the muscles healthy to gain the full benefits from also upping your movement and exercise endeavours.
It turns out that, in my case (and not unheard of in liver disease patients), some aspects of the national / generic dietary advice ...had actually been counter-productive for my body and it's particular underlying combined conditions and management challenges. A bit of an exasperating (late) discovery ...these things happen.
My liver has been detecting that and driving a sort of "false famine scenario" with inter-connected operational influence over my various body systems.
What I have come to realise is that; depending upon where each of us finds ourselves - individually - on our liver health journey: (% fatty liver / % scarred liver and stiffness / gall bladder involved / varices involved / fluid in the abdomen / swollen legs or feet / cancer involved / pre or post transplant / taking certain medications / other underlying health conditions etc.) will influence our personal dietary recommendations from our own Hepatology Team - and that guidance is likely subject to change, or further refinement, as we might experience improvements, plateaus, infections, or fresh health challenges along the way.
Sometimes even the national daily nutritional guidelines / healthy eating campaigns simply do not optimally support our individual requirements as people managing our liver disease.
Dr Google and the AI Algorithms ...will (doubtless) not have our best interests held at heart, sometimes there is also (realistically) a limit to what Primary Care / GPs can offer tailored to us too - however, our Hepatology Clinic Multidisciplinary Team Members will have more appropriate (and current) knowledge suitable for our specific requirements.
I am quite sure my diet and lifestyle are yet to be fully tuned "perfect" - but, if it seems to be suiting me better (plus is manageable and affordable) - I intend to do my best to stick at it.
From here onwards; the only "hoop jumping" I shall entertain will be of the "move more" kind e.g. the: resistance bands / basketball / hoola hoop / skipping or jumping-rope variety (muscles-willing ...I am building up towards it).
Be gone; those folks with your latest diet fad "advice". I decline being someone's Guinea Pig or thesis subject - after all, I have about 30 years of repair work to implement ...I shall be busy!
I am off now to put on some music in the kitchen - and try out cooking 4 new recipes - each one is batch cook / freeze ahead / seasonal produce / low cost grocery budget / portable meal -friendly; aiming to provide easy healthy meals ready for the couple of weeks ahead:
- a mixed veg (using above and below ground veg) vegetarian oven tray bake which I will actually serve using a frozen pollack "white fish" fish fillet - but not the batter / breadcrumb kind (50 mins in the mini oven for the veg traybake),
- a lentil and vegetable soup to serve with a slice of wholemeal bread (21 mins in a soup machine),
- a slow cooker vegan mixed bean chilli to serve with a small portion brown rice and some Greek Yoghurt (4 hours on high in the slow cooker for the chilli), and
- An All-Bran (or supermarket look alike) mixed dried fruit loaf without fat as an ingredient, it uses a mug of milk and other ingredients - it is a "mug of each" ingredient recipe - to act as an occasional dessert - intended to be sliced into portions and stashed in the freezer (45 mins in the mini oven, cooked in a lined loaf tin - which I think will both aid slicing for portion control and be slice shaped easier to space-economically store in the freezer).
I have decided that, for a Saturday, pottering around the kitchen for a couple of hours; prepping / cooking all validly counts towards my "move more" step count.
Amazing post filled with everything I’ve long believed is key to our entire health, our diet! And why one set diet for one won’t always work for another and it’s really something we as individuals need to understand, accept and tailor whatever diet we need uniquely based on what it is our own bodies require and in measures that work best for us. If our bodies are an engine, it needs fuel and oil and it needs a service, bit some engines are bigger than others, some are thirstier, some may need a B service or an A service, some may need a service every 6 months or a service every 12 months, you get the idea. We may all have some form of liver disease for example, but we all don’t need the same diet. I also firmly believe we can help fix a lot of our own health issues through diet either alone or through our diet the most. I’m living proof in that I fixed my own ascites through diet alone and through medication which was actually helping my ascites, but was also causing other health issues which I’d likley have needed more medication to help with. I’m also a firm believer in that most of our health issues are down to our diet and not just genetics which obviously also play a part.
When I left hospital with a don’t ever drink again, cut down sugars and salts, stay away from deli cold cut meats and red meat, caffeinated drinks, limit fluid intake, take the copious amount of medication prescribed and to use the traffic light system on food packaging as a safety net as to what to avoid, eat less of or double check first with your GP if you have any concerns advice, having been hospitalised with ascites, jaundice and a likely decompensated cirrhotic liver thanks to over a decade of heavy alcohol abuse and with it an extremely poor diet, I thought to myself a month in, there is no way I’m surviving this.
And that’s when I hit the research button and started researching the hell out of liver disease, jaundice, ascites, all the symptoms I had, I researched cirrhosis, even the liver as an organ and while I went down a rabbit hole of quite frankly terrifying ‘facts’, ‘figures’ and ‘data’ that is the pages of Dr Google and mostly all wrong, false, skewered, lies or minsiformation, I also found a plethora of what I call GOLD.
My quest for information lead me to lots of medical journals, old and new, science papers old and new, research studies, theories, ideas and real people’s real life testimonies of liver disease and cirrhosis and alcohol abuse which thankfully lead me to here among other resources, and through all of that my research had led me to one common denominator when it comes to our livers and alcohol abuse, OUR DIET.
And with it food, nutrition, food types, food groups and just how Important a role our diet plays in everything to do with our entire body, all our organs and our health and how much of an effect processed foods in particular and of course alcohol has on our bodies and our health.
I learned for example that a whole host of foods act as a natural diuretic which I started including in my diet among other foods. Once I started doing that I literally stopped taking my diuretics for my ascites without telling my doctor (I don’t recommend doing so) and went on to eating certain foods I thought would help me with my ascites and avoiding certain other foods that maybe wouldn’t as part of a more wider and varied diet. Thankfully I could then now drink coffee again, honestly, I could give up booze for life, but not my coffee.
I did eventually ended up telling my doctor a month or so after at one of our appointments where he ordered me in for an Ultra Sound and for my bloods which were due anyway and of course a telling off.
In between me not taking diuretics didn’t seem to have an effect on my ascites getting worse which did worry me, but the side effects they caused had certainly disappeared once I stopped them, like tingling hands and pins and needles in my hands and while I know as diuretics me going to the toilet to pee 20 or so times a day was them doing their job I suppose, it didn’t help when I still had little strength back then to get to and from the toilet so often.
That and my previous bloods had shown that my kidney numbers were not improving either which amazingly on the diuretic medication list of potential risks it said my medication may not be best suited to those with ongoing liver and kidney problems…
I honestly thought regardless, they were not helping me whatsoever other than maybe stopping my ascites getting worse which I was OK with as I didn’t want to keep getting drained. It was still there I thought as my belly still looked swollen (I was drained while in hospital, but it soon returned).
By then I was eating more and eating healthier having learned loads about diet and nutrition and could feel myself getting a bit stronger so I was hoping to see some improvements in my bloods and I did. My kidney levels were improving, my bilirubin was halved and I was less yellow and I had also put on some weight which I wondered was down to more fluid from the ascites. My doctor was happy enough and said whatever I was eating to stick with it as it was helping, but still wanted me to retake my diuretics.
That was until my US results come back that is which amazingly showed zero traces of ascites which I won’t lie I cried when learning because my research also showed me how bad ascites was for my survival chances and while my doctor will never even to this day acknowledge my diet alone fixed my ascites, he did order me to stop taking all diuretic medications which he conclude is only need to retake if it returned which touch wood it hasn’t, I’ve been ascites free for over 20 months now and in fact I’m taking zero medication now and while me being alive today is down to me quitting alcohol, my recovery is mostly down to my diet and exercise.
Zero booze didn’t make me go from under 10 stone to now over 12.5, zero booze didn’t make my muscles return or give me my strength back. It’s helped my liver of course because I’ve removed the one thing that was attacking it the most and killing it and with it me.
After I come out of hospital in March 2023 after an almost 2 week stay, my liver cap score read over 360 (it only goes to 400) and my liver stiffness score read 22.2kpa, which put my liver down as in line with advanced liver disease/cirrhosis. I was hospitalised with alcohol hepatitis. Cap score is 144 and liver stiffness is a 9 now. All may bloods, LFTs, everything is normal now.
My liver in the words of my doctor has remarkably remodelled itself, it’s now at a normal size as is my spleen. I still have a few health issues, I’m still not 100% at full strength, I have terrible alcohol neuropathy, some spider nevi and do suffer with aches and pains and there is still some muscle wastage, but I’m in a hell of a lot better health than I was almost 2 years ago.
Hi it was a variation of food and beverages, but again was specific to me so I’d be loath to recommend anything really to anyone with liver disease in terms of diet as what works for one may not work for another.
And for anyone reading I wouldn’t recommend at all stopping any medication like I did, that goes without saying, nor delving into any diet without first speaking to a specialist and ideally a liver nutrition expert if possible.
Sadly despite me asking for a referral from my GP I was never put in touch with a dietician or nutritionist at the hospital and their advice on what to eat and what not to eat I found basic and mostly didn’t apply to me.
Also I learned my situation wasn’t straightforward when it comes to the liver as the damage I did to mine was through abusing alcohol and anyone who becomes dependant on alcohol regardless of any liver disease or not really does need a specialised diet tailored to their own unique needs because alcohol abuse leads to the depletion of so many things the liver doesn’t just need, but our bodies too.
I do recommend researching into food over the Internet and typing in natural diuretics in food sources which will give you a list of natural food types and food groups, research each in separately and don’t just look up any health benefits, but look into any side effects or issues with each food.
I know for a fact for example both turmeric and ginger have ingredients in them that can help with damaged liver cells such as Curcumin, but too much of that can do more damage and if taken with other things for example, won’t do any good or may make things worse. It’s a balancing act when it comes to the diet and liver disease and a bit like whack-a-mole, you have to be prepared to be your own Guinea pig as well.
I was told not to eat cheese for example, which I love, but found cottage cheese and feta cheese to have helped me, feta cheese contains probiotics for example, also with alcohol related liver disease, our diet must contain things that help with any skin issues. My skin didn’t need to be yellow to be treeible, it had a grey look to it as well and was dry, cracked, blotchy and out of nowhere I had all these sores and scabs.
Hydration is so important too, but some people with ascites are limited in how much liquid they van drink, I was told not to exceed 1500ml, and that just wasn’t going to work for me as I was constantly thirsty.
It’s a given with sugars and salt, but our bodies do need both. I was confused about carbs and protein on being released from hospital, my body badly needed protien though, at least 120g a day I calculated and while unprocessed clean chicken is healthy, not every day, so I had to find other ways of getting enough protein in me and nuts and beans really are amazing as there are so many different types.
today I don’t have the perfect diet and I have cheat days and I’m not 100% and I may never be health wise, and I still smoke, but I’m working on that and if I’ve giving up drink and I eat as healthy as I can, the rebel in me thinks let me have a ciggie, but I know they are bad bad bad for me.
My main gripe today is how one day I can feel full of energy and strength and the next it’s gone, that’s a constant battle so I’m looking into how to combat that for good. Neuropathy is what literally keeps me awake at night though and the one thing I am desperate to fix for good so I’m working on that too and I’m hoping to find solutions through diet not medicine.
Exercise is so important too, in hospital I had to do a climb the steps challenge to be released and I tried to get out of it as while I was desperate to come home, I knew they wouldn’t let me out if I couldn’t manage it, I was scared if I went home I’d drink again and also that if something was to happen being in hospital was the best place for that something to happen.
Anyway I delayed my release by a day but was scared into doing it as if I got a bug while in hospital which was going around I was told and which was very likely I was told, it could knack my liver even further and be very dangerous for me.
It killed me climbing those steps but I did it and I remember the person who helped me saying no matter what you’ve moved around a bit at least and you have to keep moving otherwise you’ll be back in here, trust me the porter said, I see it every day, get moving and stay moving and I did.
I used rope at the foot of my bed to pull myself up in my bed as I didn’t have the strength to just get up naturally in and out of bed, I’d stand up unaided for 1 minute and the collapse, I’d repeat that several times a day until I could stand on my feet unaided for more than a few minutes, my shuffling become steps and then slow walking and the more walking. I remember trying to run across a road one day and I felt so heavy and didn’t make the 10 yard dash, I couldn’t run and that scared the hell out of me.
You don’t have to join a gym and pump weights, but walking, moving around, it’s all essential and the liver itself can actually get fat when the body it resides in is idle, the liver needs exercise as well, I actually massage mine, or try to which I feel helps blood flow, helps those cells that are maybe scarred or damaged. Or maybe not, it makes me feel like it’s doing some power of good though.
Sorry for waffling away and for the mega post, I just like getting my thoughts down if I can…
Hi what was your fibroscan score and I wonder why ultrasound only said mild fatty liver it's always made me wonder is ultrasound that good I diagnosis of cirrhosis
Hi, I feel like I hijacked your thread sorry, and I’m sorry you are going through all of this right now, but you seem to be taking things all in and are on the right path so to speak so I’m sure you will see progress and get to feel the benefits of that soon, you ARE doing all the right things I can answer that for you, and you WILL be OK, I’m sure of it, good luck and take care,
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Enlarged spleen ,high liver enzymes 
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