Recently diagnosed with stage 4 decompensated liver disease with all the expected symptoms. Taking all care to reduce stain on the liver, spleen etc. Now just getting the hang of chronic long term care. Awaiting full prognosis (still some months away still) prior to transplant discussions.
Finding the British Liver Trust documentation very helpful for guidance and explanation to immediate family and friends. (Thank you BLT)
Read and been told that there is a high calorie intake demand, up to 3k daily, for this condition. Unfortunately with appetite loss and general abdominal swelling compressing the stomach, getting anywhere near 3k is impossible.
On Fortisip plus other similar products but has anyone else had this issue? Weight loss is dramatic and very worrying. For people in a similar situation, how did/do you manage this?
I'm on 3000-3500 calories a day. Stopped eating when drinking lost over 6 stone. I've cirrhosis n ascites so having to watch my salt intake. Enlarged spleen.
Little and often was always the advice i was given. Try not to bulk out meals with lots of veg, i know that seems counter intuitive but it does make sense. They fill you up but dont offer as many calories as other things. Now that's not saying dont have any veggies, but go for more carb rich and protein rich options when you can. Snack before bed is also a good idea.
If you can get an appointment with a dietician that will probably be helpful as they can better advise on what your particular needs are.
Hello there.I was told to be eating little and often, by my great liver nurse. It needed to be small portions of what ever I was eating as same as yourself, I just couldn't face larger meals at all, as I to was suffering with ascites. its based on our individual needs ,we are all different, what applies to 1 may not apply to another, so always check with your liver nurse etc.
I'm over 4 years in from my cirrhosis diagnosis, and still there are days when I have no appetite, thats when I take my ensure plus drinks....
All I can say really is it takes a long time for your appetite to come back as normal,and still mine isn't really.
Also liver nurse said "a little of what you fancy", I had also dramatic weight loss and muscle loss. Again she said you can eat what you want at that point.
But please do check with your own medics,to make sure its OK with yourself.
Yes eating is also a real problem for me. I have no appetite at all but more importantly one to two hours after eating I feel very unwell with heart and breathing symptoms and general discomfort. I try to drink 1 or 2 Ensure plus a day with small snacks like protein bar but to be honest even that is hard
Thank you for this. Lucky that other issues are coming under contro but I think that the whole nutrition issue will be ongoing and a constant conflict that will need managing.
Hi there, I've discussed it at length and am in a similar stage/situation to you. I would always take the advice of your dietitian and it's great you've got an appointment so soon. Generally speaking, the ensure drinks are brilliant, as they are nutritionally complete whereas some other things on the market may (or may not - believe me I'm not bias .... I'll try anything 😂) be as good. Plus you can get them on prescription which helps with the costs. But on top of that it's just little and often, calorie dense foods, which your dietitian can advise based on what you usually eat. Little switches like full cream milk, full fat cheese, nuts, avacado, offal if you like it are all packed with good fats.
You may need to see your physio too if you are experiencing muscle wastage. Your dietitian can check this for you 😊
Good luck on your journey, it is possible, you just need to adapt a bit.
I'm slightly further along that you in the journey and I have to say now I've gone the other way and can't stop eating!! I was similar to most in that I had massive weight loss and muscle wastage, couldn't face eating and all that. Once my ascites started being managed effectively it was easier and easier to eat. I've found exercise massively helps me. I am prescribed fortisip but find I need them less now. I basically just eat what I want within reason. The dietitian helped me with some good ideas so hopefully they will come good for you.
I’m the same. Diagnosis July 2023. Same symptoms etc as you it sounds. Also on fortisip and foodlink shake. Over 700 calories there as you probably know. I am managing to fit way more food in now because my ascities is being treated with dueretics and is less swollen. A lot of muscle wastage but pressing on with the regime.
Trying to have full fat butter, milk etc. use when cooking along with healthy oils such as olive and avocado.
It’s difficult to avoid salt but trying my best to keep it to a minimum. Diet is full of fresh veggies, fruit and healthy stuff apart from the fatty stuff I can have for now given trying to gain weight.
It’s all very difficult to cope with but I believe patience and PMA are the key. So hard to force food on yourself when you’re very symptomatic. I can relate and if you find out anything new about the diet, please share 😁
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