Hungry all the time: Hi I am hungry all the... - PBC Foundation

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Hungry all the time

Bobbycat12 profile image
13 Replies

Hi

I am hungry all the time..I have chirrosis ..was diagnosed with it earlier this year after having pbc for over 20 years. Apart from when I had a varice bleed and after a varices banding which hurt for two weeks, I am always hungry. I also eat more sweet things but Dr said ok as I am a bit underweight as lost appetite for a year before diagnosis..I also eat the good things and low salt. I was told to have a high carbohydrate snack before bed to help with muscle wastage and also during the day! So my appetite is good......in fact excellent but I keep eating but I expected appetite it to get worse. I presume it is the liver needing supplies..any thoughts anyone ? Thanks

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Bobbycat12
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13 Replies
ranrace profile image
ranrace

I know something about this. Some days I wonder if there is a tapeworm or something. So instead of fighting, I now eat 6 or 7 small meals a day. They say that is a healthy way of eatting.... Since I went on my eat everything all the time, I have lost weight, gained muscle and my mood is better because I'm not hungry all the time.

I'm guess that you are pretty active?

Karaliz profile image
Karaliz

Hi Bobbycat. This is interesting. I was diagnosed 13 years ago at age 38 ( now 51) and initially responded to Urso although never completely. Now classed as a non responder and have been on OCA trial for 4 years after disease progression...biopsy confirmed cirrhosis at the time. 6 monthly ultrasounds and yearly fibroscans correlate and just had another biopsy which stated same. I have had what I can only describe as an empty or very hungry feeling for the past year or so. Strangely, though, eating does not always relieve it...It is most unpleasant. Do you find the feeling goes away once you have eaten? I would be very interested to learn from a dietitian, perhaps, whether a cirrhotic liver is the cause of this. Let me know if you discover anything!

Best wishes

Karaliz

Bobbycat12 profile image
Bobbycat12 in reply toKaraliz

Will do......and the feeling of hunger goes for about half an hour after a small meal and an hour after a big one....I am also eating far too much ice cream etc which I never used to like much!

cazer profile image
cazer

I was told that we do not store energy once we hit cirrhosis stage.

Also our food is not absorbed so it may seem as if we are taking in a lot but if its going straight through scuse the derails ,then it seems like a lot but isnt really.

If you are hungry your body is telling you to eat so go with the flow

Even though im overweight ive been told to have high protein and eat often.

Im borderline being listed what about you ?cazer

Bobbycat12 profile image
Bobbycat12 in reply tocazer

Hi....do you mean listed for transplant? I'm not....but time is a real issue as I am 66 and at 70 I am not entitled to one.....UK rules.

Yes I was told to eat protein and carbs to keep some weight but also not to have more muscle wastage than necessary..I have some in my upper arms..looks insightly! So I don't show then!

Michiganpbc profile image
Michiganpbc

I am hungry all the time now just started this past couple of weeks, I have stage 2 PBC, I hope this doesn't mean I am progressing ...

I started taking URSO in May of this year and have felt a little better......

I haven't talked to my liver doctor about it yet but I plan on it, I keep a bag of saltine crackers with me at all times as this hungry feeling also comes with nausea, the crackers seem to help with it all until I can get to some real food then it's yogurt , turkey or a piece of fruit or vegetables .....

in reply toMichiganpbc

Though I'm Stage 4, I have the same issue as you do Michiganpbc - for me it is a sudden onset of hunger with accompanying nausea (I will even begin dry gagging if I don't eat something straight away). Must admit though, I'm only hungry till I eat my lunch, after that I have no appetite at all.

I put my nausea down to the fact that a recent (late last year) endoscopy revealed I had Gastritis of the stomach. I don't really know if that is what is causing the nausea but it may be something you could chat to your doctor about.

Michiganpbc profile image
Michiganpbc in reply to

I had a scope where they look at everything in your GI system all negative I had a upper scope lower scope biopsy in each area nothing shows up maybe the PBC I am thinking since it is related to digestion and disbursement of food and then vitamins and minerals. I am seeing lots of others with PBC with hunger pains and nausea so maybe it is the PBC?

Karaliz profile image
Karaliz in reply to

Hi Dianne

I have portal hypertensive gastropathy revealed on gastroscopy. This is not the same as gastritis even though some Drs seem to use the terms interchangeably. I agree that these conditions can cause symptoms even though my Dr says PHG shouldn't! I, along with you and others, seem to have a variety of issues with digestion and appetite. When one's digestive tract is compromised in one way or another, then it makes sense to me that symptoms will follow.

Hope you're as well as can be.

Karaliz

in reply toKaraliz

Hi Karaliz,

Well, we learn something new every day, don't we? I have never heard of portal hypertensive gastropathy (going to have to 'goggle' that one - done, didn't like what I read and saw), sorry you have been diagnosed with PHG.

I think you are correct when you say that a compromised digestive system must produce some symptoms - thinking back I have had digestive issues throughout my 28 year journey with PBC, so I don't think it has much to do with 'stages'. Over the years I have experienced intermittent adverse problems with different foods - i.e. tomatoes for instance, sometimes I could eat them, but other times I couldn't, didn't seem to be any rhyme or reason. Now. it's a different story, so many foods I can no longer tolerate.

I'm doing okay, how about you?

Karaliz profile image
Karaliz in reply to

Yes, PHG looks sinister doesn't it with that 'snake skin'appearance from engorged blood vessels !

Like you, I have so many digestive problems, feel full very quickly very often, that hungry, empty feeling that comes and goes and seems unrelated to whether I've eaten and certain things I loved now sadly cast aside.....Boring to talk about but they do take their toll !

I'm ok thanks Di, plodding along on the OCA which I'm very grateful for. Had my gallbladder out in August due to 2 bouts of pancreatitis last year - the pain of which I can safely say is worse than child birth!

Hope life is treating you well up on the gorgeous coast. On we push x

Karaliz

Bobbycat12 profile image
Bobbycat12

Hi, I wouldnt worry... i was on stage 2 for many many years....I dont feel sick, just bloated...thats because I eat too much for a person with a small frame and low weight normally. Good luck

Junolee profile image
Junolee

Hi all, four years diagnosed with PBC, responding well to Urso. I am also on imuran due to AIH overlap. Initially I was on steroids for that for about 18 months and blamed them for feeling hungry all the time, however consultant laughed and said it was just my liver needing more energy to function and I should get used to it. He was right, even after finishing with the steroids over two years I am constantly eating 😜 However, I am lucky that I don't gain weight have stayed at same weight for years dropping a couple of pounds here and there and gaining back on holidays/occasions. I walk a lot but do seem to be "get away" with eating a fair bit. At the top end of my BMI. L

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