Living with Fatty Liver and NASH
2,497 members351 posts

"The most frustrating thing about being diagnosed with fatty liver or NASH is…"

Being accused of being a liar by people who always associate cirrhosis with alcohol

You have to explained what NAFLD & NASH mean.

Then you get a lecture about the liver healing itself if we would just stop eating so much. I have put on 3 stones with medication for other conditions and initially diagnosed through malnutrition.

36 Replies
oldestnewest

I know how you feel. I am fed up being told to stop eating and get more exercise. Like you, I have multiple conditions and find losing weight a struggle. One day these young whipersnapper's will be in our position and the shoe will be on the other foot.

3 likes
Reply

I hope they don't. I hope there will be a cure for all of them.

However, I do sometimes wish they could live it, just for one day so they can understand.

I don't want their sympathy I want to lose their judgements

6 likes
Reply

I don't wish illness on anyone. However, very few people go through life without contracting some disease or other. It is only then that these judgmental people will realise that we were not telling lies.

5 likes
Reply

I wish My Liver Doctor could feel this pain! I guarantee he wouldn't be telling his patients you don't feel pain from Cirrohos! That's chow I discovered it in the first place!

6 likes
Reply

My liver Dr is the same! it really gets on my nerves! I am in pain all of the time! people just don"t get it

4 likes
Reply

How could you be in pain? You're only suffering from something that makes it near impossible for your body to repair itself.....oh wait

5 likes
Reply

The liver does not feel pain but the nerve endings in the sac around the liver do as the liver enlarges.

6 likes
Reply

My doctor feels the same way. I have been having pain for a year. Gallbladder has been removed everything else looks good . I have type 2 diabetes also to go along with the Chrosis.

2 likes
Reply

I feel the same way, when people hear Cirrohos the first thing they think is alcoholic, and to be honest I was one of those who thought that way, now I make sure to say non-alcoholic cirrhosis of liver.

6 likes
Reply

Me to :( my cousin died in 2015 of Chrioss,but he was an alolcholic! I have never been a drinker & I have ended up like this! I know it is wrong but I feel so angry at my cousin! He got that way coz of drink! I haven"t! he was only 36 when he died! People are so judgemental!

5 likes
Reply

I was adopted, My biological father apparently drinked alot and died in his 40s. I'm about to turn 52. My Son is 19 and he inherited it.

3 likes
Reply

So sorry here your son Inherited it :( I hope he can overcome it with help:( It must awful for you :( It was hard enough with my cousin,so for you to see it with you son must be heartbreaking :( & for you to have liver diease to :( you have it tough :( so the last thing you need is Judgement! I get awful pain from my liver diease :( after I eat is awful! my liver DR is the same! My Gp is brill though & very understanding :) so I am lucky! I also have liver tumors beign, but it terrofies me they could turn to cancer!

2 likes
Reply

I understand my last scans came back inconclusive, I've been on Clinical Trial for 3 months for a medicine that lowers pressure. My Liver is unable to get blood through and it causes pressure in my veins, they could bust and I would hemmoriage to death. I doing phase 2 of study there will be a phase 3 then hopefully FDA will approve medicine. It makes me so sick and will not be released in time to save me but I'm doing this so it may save my Son, Grandkids and everyone else with this horrible disease. Tomorrow morning I go in Hospital they will insert needle and Cath and instrument that balloons and measure pressure until they get 3 of the same readings. I had this at beginning of trial and they don't get me numb because it's bad for Liver, It hurt so bad my legs flew straight up in air. They are talking to me about a Trial that suspose cto reverse the fibrosis, it's a year long.

4 likes
Reply

I feel the same way and know if I had been a drinker I would be dead now. But my Son is 19 he is a EMT because he wants to help people he works out every day has perfect BMI. Won't even take a Tylenol. Doesn't eat junk food and his AST levels are at the level mine were when diagnosed with Cirrhosis. My daughter drinks and party's alot is 33 with 4 kids her Liver seems fine but my 11 year old Grandson inherited hiatal hernia and GERD from me and I forsee him getting the Liver Disease.

1 like
Reply

So sorry you are going though such a horrid time :(

2 likes
Reply

This really needs to change. Stats prove that NAFLD is more common than the alcoholic kind in the western world. Such a shame our doctors prefer to live in a fantasy land where everything has simple answers

1 like
Reply

How is your sugar intake?

1 like
Reply

Same problem here. My weight is a symptom, not the cause. I've always been active but that has lessened over the years due to fatigue and cells being slow to repair/replace. I was either born this way or it MIGHT be a result of fructose intake when i was young. Since my fructose intake is almost nil and has been so for a longtime now, telling me to just eat right isn't going to change the damage. If they could recommend specific dietary changes that might be helpful, but they tell me as doctors they can't do that. I guess I need a dietitian but sadly dietitians are even less familiar with NAFLD

1 like
Reply

Try having a look here

britishlivertrust.org.uk/li...

1 like
Reply

im not sure what im looking for on that page

1 like
Reply

Dietary advice

1 like
Reply

I've gotten a similar response of ... but you don't drink ... it is amazing what people say to your face 🙂

4 likes
Reply

And the good old favourite .... everyone knows the liver heals itself

7 likes
Reply

Not with Cirrhosis!

7 likes
Reply

I know that's why it's frustrating

X

3 likes
Reply

:(

1 like
Reply

:(

1 like
Reply

Yes my report said My Liver looks like one from a alcoholic, It's like the doctors don't believe me. I make sure I say non-alcoholic cirrhosis of liver when ever referring to my disease.

1 like
Reply

When I was diagnosed 3 years ago I was told to cut down on my coffee intake and protein. My last visit I was told drink at least 4 cups of coffee a day and increase your protein because I'm losing muscle mass in arms. I also never knew Cirrohos causes osteoporosis, which I now have, I'm only 51 years old....

4 likes
Reply

Hey at least they believe you CAN be ill. I spend about 2 decades trying to convince doctors I was sick. They believed that since I was under 30 I couldn't be ill in any way shape or form

2 likes
Reply

Hey I know how you feel! I have been treated in the same way.I am always being told what to eat, by people who know nothing about the condtion! Drs wanted me to have a gastric band & got really shirty when I said no! I am not overweight enough! I looked into it & decided it wasn"t for me! Everybody had an option! I feel like Drs blame me for my liver diease! I am always being told by them, if you lose weight it will all go away! well I have lost weight & to be honest it has bearly made a diffrence! I have a metobic conditon, which is always being forgot about! so losing weight is hard me! I have lernt to rise above it! It still winds me up,but I don"t let it get to me like it did!

4 likes
Reply

Awful isn't it? I have several health problems and getting one doctor to take another into account for meds is near impossible.

🙄

4 likes
Reply

I finished this Clinical Trial, It did not lower my portal Hypertension, it did slow my heart rate from 90+ down to 70-80. Medicine made me very sick. I'm being offered another trial that's longer, and riskier, I really don't know what to do. Doctor didn't even tell me I had severe Portal Hypertension! The Clinical Trial people were waiting for me at my appt. If I do this trial and receive placebo I risk the chance of veins bleeding. Doctor wrote in my paperwork MRI for shunt on Oct 27, If I do not participate in trial.

1 like
Reply

I get the same :( My liver dr wanted me to go on some stupid diet, where all you eat is protien! I am Diabetic as well! I thought you can sod off! I am doing weight watchers & lost 3lb in the first week! I find it fairly easy to follow! It is expensive so I am gonna have a chat with my gp about some funding for it! My weight is blamed for my various conditons & it really winds me up! I have Polycysic overies! A metabolc disorder! known to cause diabeties! Plus my mum & aunt who are sisters have it! but no it"s your weight! pocs also causes Fatty liver NASH! it is widely know in America! my liver tumors are also caused by hormone inbalance they told me that! I was offered a gastic band! I was not even over weight enough! I turned it down! & the respone from some people! it is made out to be the magic answer & it"s not! It could even make my conditon worse! I have tried to expain to people my condtions are lifelong! yes I can"t do things to help & keep as healthy as I can, but it will not reverise! So sorry you are treated this way :( don"t bother to explaing to people anymore! They don"t want to understand! you don"t have to answer to anyone! just the best you can!

1 like
Reply

Hi

Nearly 4 years ago a gastroenterologist said mine was muscular, nothing wrong with me!!! 2 years ago I was diagnosed with nafld and then Nov 2016 I had a biopsy and was diagnosed with Nash!! It's so painful isn't it especially when I have a lot of other conditions as well. Love and hugs to you all. Lynne xxxx

Reply

Also, mine was caused by all the meds my drs have given me over the years!!! Xxxx

Reply

You may also like...