We would like your help prioritising s... - British Liver Trust
We would like your help prioritising some new web pages that have been suggested. Which of these do you think should we work on first?
Medical info so important. Hubby died 7 months after cirrhosis diagnosis, only saw consultant once, never had contact details, no means of asking questions, chasing up appts. If there is a liver charter stating care guidelines then all patients should know. Sadly too late for us
what does social precribing mean?
Social Prescribing and what it entails is detailed on the NHS England page at:- england.nhs.uk/personalised...
Katie
Voted for diet info only because I do not live in the UK. If still in the UK then probably - medical team.
I would like more diet information as I have not had any from my Liver team.
I voted for diet information because one needs variety in ones diet, it's important to eat healthily, eat the right food, the right quantities, drink sufficient water and constantly watch out for things that could affect you, for example I find certain foods difficult to process and they cause dreadful constipation for me.
Pre-tp I used an air fryer mostly, post tp I mainly live on bread and spread for example Avocados, one convinces one self that although Avocados are high in fat they are low in saturated fat, but one needs to watch the quantities too, after all fat is still fat, eat too much fat even unsaturated and it is still too much fat.
For myself pre-tp found it difficult to find sufficient protein and calories, food that didn't cause constipation, sort of feel this goes hand in hand with medication. Some medications affect food, constipation etc. so this might need to feed into medications and even state of the liver disease, but at the same time be a useful source of information for both patients and dieticians?
I don't see an exercise category here, ways to maintain muscle mass, and after tp, given whole lot of exercises, that would be beneficial to make people aware of these.
I suppose you have already tried Apple juice and drinking coffee to help with your constipation? Works a treat. I take Kefir so my B12 pills get into my system but this would cause constipation, so I drink filter coffee/ apple juice separately. Think the Apple juice is the real winner but the coffee does help.
Thank you, actually was trying to motivate why I voted for diet information online, but appreciate the thoughts. Apple juice is a favourite of mine, though with my type 2 diabetes I have to be careful and coffee, I have heard it is good to protect the liver, just never got into the habit of drinking it, definitely something that they could refer to in diet information. Thanks for your input 😀
(I really need a spell checker in here)
I can't vote I don't understand any of it .i had a transplant 6 years ago at the qe in Birmingham can't fault the care I got fantastic the pre assessment I had and book they gave me pretty much gave me all the information I needed
I did get some fabulous advice from the dieticians pre and post transplant. That said I also cook for myself, I use this term loosely as it largely means heating ready meals or making toast, no facilities like a stove anymore, so cooking as a general term, but dieticians have been really helpful and they gave me a lot of ideas for food, unfortunately as others have said many foods good for liver disease are bad for other conditions, so sometimes the advice is contradictory, still maybe they can feed this all into categories or give people the opportunity to filter their diets or flag possible conflicts etc. It really depends on how they plan to structure this topic, is it just a general idea of what foods to eat, or what is healthy, make your own choice or does it take into account your possible conditions. 😀
(Really the double key entry again this morning)
I voted Diet information as I’m already partly restricted with being GF and now my system doesn’t like potatoes & some other veg.
Yes, sadly I also have the potato problem, mash is dreadful for me, but I love it!
Another one on diet info, its an absolute minefield and doesn't help that the advice you get is so contradictory sometimes. Example...
In trying to investigate liver issues hubby was initially told me probably had gallbladder issues and told to avoid high fat foods, especially dairy. He was then diagnosed with T2 diabetes, told to avoid sugar, carbs, fruit and lose more weight - he had already lost 6 stone in 5 months because he was terrified to eat anything and end up with all the pain again; diabetes nurse said low fat loe sugar low carb.
So now, his diet is down to basically chicken eggs and vegetables. Hes barely eating 1000 calories a day. See gastroenterologist who says should eat normal diet to try and balance the weight loss as hes bordering on an eating disorder and asks diabetes nurse to check in for medication check. Diabetes nurse says ignore gastro and follow previous advice.
I am not food clueless; I know food groups, foods naturally high/low in sugars, fats, protein, carbs etc. But the amount of conflicting and misinformation out there is ridiculous!
I agree with you I have multiple disease, Crohn's Diabetes, liver chirosis.I have not found anyone who can give diet advice that does not contradict each other.
It is truly a nightmare.
Totally agree!
I voted Diet information. Since my husbands diagnosis i have had zero information about diet. As this seems to be the only way to treat NAFLD, i am forever worried about the food i prepare. i have read everything i can find on the Net - how much of it is true - how can we know. we need a trusted source. My husband is if anything underweight, what can he eat to increase his weight - when should he eat it? How strict should we be? i just dont really know.
