PBC and DENIAL

I am 47 dx with PBC in Jan '14 via liver bx. I take Urso 300mgx3/per day. In the beg i learned to cope, changed my diet, stopped drinking alcohol until now!!

I have had my lfts checked twice and both times within normal range!

I'm being honest here!! So I have recently started drinking again! My attitude has been? "Drinking is not going to kill me!" I want to have that glass of wine so I do! I've been having 1-2 everyday!! Which in turn makes me depressed! I'm feeling a false sense of security due to the normal lfts, but I know that I must stay healthy!!! I've got a teenage daughter and a husband.

I know what I must do! I guess I'm looking to be disciplined and wonder if anyone else has a prob staying on the right track... ?

Please help!! Does anyone know the facts on PBC and alcohol? I was told by my doctor 2 per week was fine. I'm guilty to tell him at my next visit that I have failed!! I know I can get back to healthy!!! Thanks!!!!

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  • My PBC was neither alchol nor drugs, it just happend. Family alone should be a good enough reason to stop drinking. If not do it for your self. You know you can do it, Always ready to chat..Take care

  • Your words definitely with me as I go through my day. I thank you! And you are right!! I can do this!!!

  • Nice to hear that. We are with you..x

  • I'm 48 and have pbc ...I try to eat healthy and exercise however concerning alcohol I don't drink in week and only if I go out and if I do I don't really think about how much I'm drinking .Im on uros four times a day and only been on it 3 mths but already levels in normal range and Iv not changed my alcohol levels .I think everyone different and pbc is not caused by alcohol so as long as your sensible then should be ok .I think stress is more harmful to the illness .Listen to your body and eat healthy ...pbc or not we should all do that anyway and listen to our body's .Take care and good luck

  • Thank you for your input. All of u here help me! I guess that's what we are suppose to do in life, so again thanks for taking the time!

  • Thank you for your words!! Yes... Stress very bad!!! Sadly, it seems as though my lifestyle very much does involve alcohol to some degree and truth is, I needed to cut back anyways!! I've done that, but I was feeling so down because I started again, but atleast to a lesser degree!! Regardless of disease, you are correct; we should be healthy and balanced!!!!

  • Thank you- appreciate feed back. Yes, I agree listening to the body and taking care if ones self is key... B well!

  • Hi, Cher29. I've had PBC for 10 years along with coeliac disease, got them both diagnosed at same time! I've kicked the backside out of it for years (regarding the gluten free diet) but I don't drink much alcohol and never really have. The odd glass of wine.

    Kicking the habit of not eating anything I like is the hardest thing and I still cheat. PBC diagnosis has messed my head up and yes, I have been in denial as my bloods have always been ok??

    Guilt ridden, confused, peed off, angry etc etc, I know where you're coming from. I have allowed this 'Thing' to take over my life for the last 10 years but not anymore. I'm just 50 now, doing everything I want in moderation, trying to stick to my diet, started the gym, cut down on smoking, not drinking more than a glass a week, taking my meds like I should.

    Basically, It's NEVER too late to start looking after yourself but do what makes YOU happy. :-)

  • Good info!! I know that I have to stay in control and treat my body well!! Yes, you be happy too!

  • Me too. 47, 2 kids etc etc. Have aih mostly as the moment, pbc to develop. All my results have been in the mormal range since starting the meds a year ago.

    I try to stick to just on the weekends : two glasses friday/Sat. Doctor said stick to the daily limit- it seems we all get different advice. I dont seem to be able drink more/want more than that. Also go for low alcohol wines and even no alcohol. I know they are not as good quality and some taste like lollywater but there are a few good ones.To make it worse my husband is a wine buff and we grow grapes for wine production....

    I am struggling to change also but I also feel moderation is key, we also have to have quality of life as well- is a glass of wine any worse than a paracetamol?

    Dont know if this helps but your post made me feel not so alone!

  • Thank you!!! My husband loves wine also!! I do believe in doin what makes us happy!! I appreciate your honesty!!!! I thank you all for allowing me to get this out there!! We all have our own boat to row...

  • :-D From the doctor today my bloods keep improving as well so the boat I am sailing is for the moment the one I am sticking with....husband is back from florida, the sun is shining (in the uk this is a cause for celebration) so I am going to enjoy a nice glass of wine! (Its friday) Cher, have a great weekend.

  • Hello Cher29.

    Although PBC has nothing to do with developing due to alcohol, in my view anything that has even slight impact on the liver can weaken things even more.

    I chose not to bother with alcohol after my first abnormal LFT early 2010 (diagnosed Dec 2010 when I was 46) and it's not bothered me at all as I was not that bothered in the first place. I only tended to have several 24th December with family but had responsibility of children being a widow so I always had to be fully functioning. I never botherd going out at night even before and during my first marriage and now I'm remarried we don't tend to bother.

    My husband and I do a lot of weekend walking and we can of an occasion pop in a pub, he'll have a couple pints, I will usually manage just one of the small pure orange but I have tried the alcohol free beer once that wasn't bad but haven't had again.

    I'd not say anyone who has been partial to alcohol prior to diagnose to quit completely, the odd glass I really doubt would do any harm, would more than likely be several that would probably have the LFTs rising more than they would without any.

    To me with the thought of what might happen with PBC in the future I think myself I'd rather enjoy life, try to get on and also try to help myself as much as I can. My children are grown-up so I don't have responsibility there any longer but whilst my children were growing up and being a widow I used to often wonder what would happen if anything happened to me and that was enough to continue taking care of myself. I am now married again and I would like us to enjoy life together and be around a long time. Finding out I had PBC after a year of marriage was not something I wanted but it developed and have to deal as and when anything comes along.

  • Thank u soo much for your message!! Funny how strangers with something in common have made me feel loved!! I also have been married almost a year and sooo grateful for my loving husband!!! Be well!!!

  • Hi there. I'm 50. I was diagnosed in 2008. I stopped drinking alcohol when I got my diagnosis from my GP. I then saw my specialist for the first time and asked him if it was ok to have a little glass of champagne at my wedding the following month. He said I could drink alcohol as normal, ie as per current guidelines 14 to 21 units a week. And that's what I do. My LFT's remain within normal range. I try to eat healthily and try to get gentle exersise, mostly walking. Hope that helps ☺️

  • It helps tremendously!! Thanks for the love!!!!

  • My specialists are internationally recognised in the field of PBC. I'm in Newcastle, North East England. My specialists are Prof David Jones and Prof Julia Newton.

  • I'm in Santa Barbara, California. I see a specialist in LA. I do need to get more info because sometimes I get too fearful to read too much about it, some outcomes too scary. I know I'm a bit of a wimp!! I will look up your doctors. Are the guidelines specifically for pbc patients? Thank you again for your words!!

  • Hello Tessa.

    Good to read your LFTs remain normal currently. Mine are still abnormal but I'm doing pretty well. I am 50 myself now, was diagnosed in 2010.

    I have read that drinking alcohol is ok with PBC, the norm what any woman would have within the guidelines. I think it is when PBC is really bad that it wouldnt' be recommended.

    Like a lot with PBC some of us choose not to drink alcohol and I am one of them. I think at the end of the day it all depends on how you feel yourself about it and how you are doing.

    I think the biggest bugbear here with PBC isn't having some alcohol but the fact that PBC is wrongly thought of as being caused because of alcohol. It has taken me 4yrs now to actually go into a pub and not bother if anyone asks me if I am having a drink and I don't care when I state orange only. Prior to PBC I could gladly say I wasn't drinking as I never really did except special occasions and Christmas

    as not having PBC it was something I could do or leave. Seems a different perspective after diagnosis.

  • Hi Peridot, you've summed it up really nicely. There is no doubt in my mind that if it was found I had liver damage/cirrhosis I wouldn't drink alcohol.

    It has always bugged me when people incorrectly link PBC and alcohol. Just recently while at my local the person I was chatting with asked about my condition. When I told them what it was called and the word cirrhosis was said they looked straight at my glass LOL.

  • Hello Tessa.

    I don't actually tell many people I have PBC. It's not noticeable during the day, it would be at night though due to itching.

    I've encounterd Nurses and Health Care Assistants who have asked me how much I drink when they have asked what PBC stands for.

    Even though PBC is a liver condition it is actually biliary starting with the bile ducts that then inflame the liver with leakage from bile ducts that are under attack. This is how I tend to describe it to anyone who goes as far as asking what it really means.

    I even told someone once I had Primary Biliary Cholestatis, same letters and certainly easier!

  • Hi Cher29 - I struggle with some (other) issues too, and It's good to have this forum to be able to share. (If I want to pretend I'm wonderful I can do that in every other part of my life and wouldn't need to post here!) We all need an outlet where we can be honest about our issues without fear of being judged. Guilt isn't a helpful emotion if it causes depression. Please know that you're not alone, and that it's ok to be in that place sometimes. It's not ok to stay in that place though.

    Moderation is the key, and I believe that if we drink moderately it won't hurt us, especially if we are living a healthy lifestyle. (The guilt is worse for our health I believe.)

    I will keep you in prayer. TK&GB

  • I was asked to stop drinking when my LFTs were high - zero alcohol made no difference to the results..... I started on urso and wham the LFTs were all back down. I drink, not every night, but when I want a drink I have it... Over the 3 years it has made absolutely no difference to my results, they are stable. I have no cirrohsis, I am sure if I did I would act acordingly.

    No one I have told about my condition has ever thought it is due to drink, but I always say I have an auto immune condition rather than a liver condition, so maybe that is the difference.

    I also have a teenage son and I have every intention of seeing him married and with a family of his own... But if he leaves it til as late as his father I will be nearly 80.... So I hope he decides to marry young.....

    Keep well and stress free.

    Lou

  • Thank you for sharing! Appreciate the words! I guess I have read the more dreadful stories. I will try and stay healthy! B well!

  • The internet is a wonderful thing but also full of stories, with no back up facts and once read are not easily forgotten!

    You must go by how you are doing and feel. If you feel awful there is probably a reason, it may be the PBC it may be something completely unrelated, if we didn't have PBC we would still get ill, have aches and pains, have to try and be healthy, exercise etc.

    keep well

    L x

  • Cher,

    Are you a member of the PBC Foundation?

    If you can, give us a call.

    Robert.

  • No. I will look you up. I've heard of the others who belong to foundation. Thank you for info.

  • Hi Cher,

    I appreciate your candidness about alcohol. I have a about 150 bottles of wine in my cellar that I made. I really only drank about a glass a day, but it has been a hobby to make it. I also like to entertain and serve guests my homemade brew. Now however, I am completely off alcohol. I figure anything to do with the liver, it is best not to drink. I have to just find another hobby and use my wine for cooking and as gifts. At the end of the day, it is your life and you have to do what is best for you and your family. The only other thing I would reccommend is figure out why you are drinking. If it is because you enjoy it and it isn't harming you or your family, that is one thing. But if you are drinking because you need to unwind and relieve stress, then it would be good to find another outlet for this. I hope this helps!

  • I appreciate your words! Not every response has been completely pleasant ( I enjoy reading ALL!) that's why I asked!!! You are absolutely right! I do have a glass of wine because it relaxes me!! I have been exercising more! I've learned that some bad habits are ALL hard to give-up!!! I'm proud of you for choosing another hobby! Mind over Matter!!! Thanks!!

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