Confused about PBC

Hi, I am 40 years old, female and got told I have pbc and have been failing the liver function test this past two years. Had my gallstones and gallbladder removed two years ago and also had a massive ovarian tumour removed last year, thank god not cancerous, but now this - PBC - totally in shock, don't understand why! Have been put on ursoflak but keep wondering how long I got am going to get, do you get very sick with it etc, confused.

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7 Replies

  • Hi joker321

    Your situation sounds like mine. My bloodwork was perfect until they removed my gallbladder. I have 2 years worth of bloodwork prior to surgery to prove it. I have now been on ursodiol (i am from u.s) for 4 months now. My alt, ast, alk phos andd ggt have improved greatly. I am fortunate and have no symptoms of this disease other than bloodwork. I am scared some days, thats for sure, but I am trying not to live in fear and am doing all the research I can to help myself. I personally discovered going gluten free eliminated tiredness which I thought was just everyday "normal" for me. I also used to get brain fog and mentally feel better. A lot of my reading is pushing me to a holistic approach now, as my own studying has lead me to fully believe in something called "leaky gut syndrome." You can google it yourself. Our health truly starts in the gut and i am going on probiotics and am going to find out where i am vitamin deficient to try and heal myself. To me, it's worth a shot. All of my reading has determined that the shots we receive as children and the antibiotics that we've taken, and all of the genetically processed foods is causing our gut to become disturbed. It may sound crazy but once you do your own homework like i have, it makes sense. I will keep you updated once I see a holistic doctor who specializes in this sort of thing. Some chiropractors do as well. Take it easy on yourself and do yourself a favor and read up on it. It surely cannot hurt and maybe will make things better.

  • Thankyou so much this has help me to understand little bit more about pbc as my doctor has not seen me since I was told and needs to ask more questions

  • Hello Joker321.

    My route to PBC wasn't like yours. I started itching in early 2010, that is what took me to see a doctor. I didn't think abotu fatigue at the time (I no longer have). I was 45 at the time, 46yrs by the time I was informed I had PBC 9 months later. Prior to the itching I never really had anything wrong with me so at first can be hard to accept that you have been informed you ahve something that is currently incurable and also not sure how it is going to go over time. I hated the fact that I was on the doctor's radar and still am now.

    I find it a puzzling thing to have as it's not yet known exactly how we develop it. But I decided long ago that I would deal with things as and when and am not interested in how things could turn as they might never do so.

    It does take time for it to really sink in and then slowly you start to press on with life and all being well the urso starts helping and the liver function test (or LFTs as you will find them called) along with the GGT blood test taken with the LFTs will start to improve.

    I started on urso Dec 2010 and within 2 months my LFTs and GGT had started to drop, they were in fact a great improvement. I got to the year mark on urso and was still up and down in myself and with the itching as that has not gone away for me. It is said that urso can't make certain symptons vanish like fatigue and itching but for some they can improve and seems a rare few do have these symptons go away. I haven't had fatigue since the year after starting urso but think that due to imrpoved LFTs and also changes in my lifestyle. Itching took some time to resolve better and I itch at night and though confined to then I do get borken sleep due to it.

    I am now 51 and been diagnosed with PBC for over 4 years but the itching has been with me for 5yrs now.

    You can become sick with PBC but I still think it is better to concentrate on the here and now as opposed to the future that might never be as a lot with PBC apparently never do become very sick with it and it's said that majority end up dying with something else as opposed to it being due to PBC.

    If like me and a lot you thought you had a good diet pre-PBC diagnosis, now is the time to make sure you do have a good one. I think it can help for a better way of life and also a better feeling of well-being plus it might stave off anything else. I keep a check on fats these days due to bile aiding in breaking it up in the system and urso being a component of bile. But we do need some fat in the diet for the absorption of important fat-soluble vitaminds like A, D & K in particular. I utilise the sun when I can for the absorption of Vitamin D which is the best way to do it as with PBC we can start having bone problems if we lack badly in D.

    As donna01 has also stated, regarding foods, I avoid MSG, other additives and don't have artificial sweeteners if at all possible. I cook from scratch nearly all the time when I can.

  • Thank you so much for the reply As I have had a lot off sleepless nights since I have been told worring about the future and what it will bring great information about diet as I didn't know this

  • I asked the hospital consultant I saw on my first visit back in 2010 pre-diagnosis of PBC if there was anything that I should avoid with having what was considered a problem with my liver.

    He just said to continue as I normally am dietarywise as I seemed to be doing great there but then added, 'the liver loves calories'.

    I've never been partial to 'fry-ups', have loathed bacon since I was a teenager when my family would have a bacon meal considered 'the full English' later of a Sunday morning. Never touched bacon since leaving home when I was 19. Not one for take-aways and even take-away fish and chips are only really bought when on holiday an odd time or two. I do think that to me it seems sense to cut back a bit on the fat intake if you have alilver disorder. To my way of thinking, the more fat we consume that would surely be more bile we need to produce to deal with it?

    I do odd times eat something that I wouldn't normally have, we are after all human as the saying goes but for me they are more like a treat and I often think you enjoy certain things more if you don't eat often.

    I recently saw a good informative programme on tv about certain foods, were they good for us. There was an experiment undertaken regarding hydration and several adults took part in work-out in a gym over 3 days. Each time they drank a different liquid following. One was orange juice, another water and then there was milk. It was said that milk was the best form of rehydration following exercise which I did find interesting but moreso as when I go out walking I often end with a bottle of milk now. My way was never thinking of rehydration as such but thought better for me now than fruit juice for eg (I do eat raw fruit and veg often) due to the calcium content.

    I did read about diet with a liver condition once and there is a leaflet you can see on the British Liver Trust website (I'll post the link). It is pretty informative but a lot does not apply to me in particular as currently I am notso bad with this PBC.

  • Hi, The trouble is we all seem to get told different things. I love fry ups and have one almost daily, but originally got told by my consultant to do what my mother told me not to do, go to McDonalds, Burger kings and pizza shops. This was all to help me put on weight, never worked though....

  • Hello Brummi.

    I was a 1960s child and was raised on what was traditional English food back then. Evening meals tended to consist of as you probably know, 'meat and 2 veg'. We never really had any food considered foreign until in the mid to late 1970s we had Chinese Chip Shops and take-aways started springing up. I know in the long summer school holidays, neighbourhood children, my siblings and I would all sit on the street together munching on chips bought from the local fish and chip shop.

    McDonalds didn't come to my home town until sometime in the late 1980s. I raised my own children with just the odd Pizza Hut meal as a treat in the school holidays or when we were away on holiday.

    I know my father had chickens kept locally on a penn that was a bit of land he bought himself that you could keep livestock on. So for many years growing up I had what is considered today organic free-range chickens and eggs.

    I know my own parents' generation, there are a lot who are still enjoying retirement now and they are in their mid 70s and yes they still probably eat fry-ups.

    I also think regarding food, I think too it depends what form of work or even activity that we do to burn it off. Things have changed nowadays, most people use cars as opposed to a great distance of walking so maybe that is also another factor re our diets?

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