AHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!

I recently after being diagnosed with pbc, underwent an enoscopy. They discovered that i also had a hiatus hernia, and a tear in my oesophagus. I therefore had a very bad infection in my stomach. so, i go to the doctor on friday, expecting to start Urso medication, to get asked why i wanted to start this drug?????? also, i couldnt start it just now as i have to get rid of this infection that is so bad i have to take 14 tablets a day.

i am astonished at the lack of medical knowledge by the doctors and the lack of support from them. To get told BY A LETTER, that you have an incurable chronic liver disease and expected just to get on with things.

i find it very hard to comprehend, and some days i feel how long before the condition gets worse? 1 year, 5 years who knows.

i feel very low at times as just been diagnosed in the last few weeks. i have to stay normal for my fiance and my children who are young.its hard sometimes.

16 Replies

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  • Posh, I think the lack of knowledge and dismissive attitude is harder for me to understand than the fact that I have PBC. Because PBC is a rare disease you can understand a GP may not have much knowledge, but when you see a Liver specialist you expect some understanding or at least the truth.....We don't know. What I HATE is their attitude that PBC is no big thing.....JUST GO ON WITH LIFE.

    The unpredictable nature of PBC is what drive me crazy. I find it nearly impossible to move on with life. If not for all the love and support from my fellow PBCers I really think they would cart me away in a straight jacket.

    Since my dx (Jan. 2011) I have spent almost every waking hour researching PBC and my conclusion is for NOW, PBC is going to do what IT wants to do and I have not choise but to go along for the ride. So in the end it really doesn't matter that the doctors are lacking in knowledge. Their lack of support and dismissive attitude is a disgrace to thir profession.

    BIG Hugs

  • Thank you Kosy2.... you have summed up exactly how we all must feel... its like living under a time bomb as no one knows when it will kick off!!!!!!!!!!!!!!!!!!!!!

    big hugs back x

  • Posh,

    Did they tell you what the stomach infection is? Sounds like H. pylori.

  • Yes, feels like that doesn't it? But on the other hand no one is guaranteed anything in life and I try to appreciate all that I have which is very much; loving parents, siblings, friends, dog and cat (well I think the cat loves me but it is hard to tell sometimes!) I have access to healthcare, the internet and the people on this forum who have in a short time given me great support and information.

  • The hardest thing for me is that there are no black and white answers for the condition and that it does not follow any logically progression:- ie.

    someone with Stage 1, on diagnosis, could get to stage 4 before sometone with Stage 3, on diagnosis, would get there!

    I agree with kosy2. We have no real control over PBC so we just have to cope with the symptoms we have and adapt out lives accordingly.

    Posh - please don't let it get you down too much. You cannot live your life wondering when it is going to get worse. It might never get any worse. We are all different. Live your life to the fullest and deal with whatever comes your way when it comes. The support of your family is really important and you need to explain to them that PBC is an autoimmune condition which attacks the bile ducts and you have no control over it and that Urso will help slow down its progression. I know it's hard, but you have to remain positive and get on with life for your own sanity.

    The infection is a set back you could do without but when that subsides, hopefully you will feel more optimistic.

    It is also frustrating and annoying that your doctors have been so insensitive. You should contact the PBC Foundation and they will send you information about PBC. There is also a great leaflet you can get that is aimed at informing your doctorsa about what excatly PBC is. Give it to him/her on your next visit. Good Luck and stay strong. You are amongst friends here who have all gone through what you are going through and have come out the other end Take care. x

  • thank you... i have joined the PBC Foundation, and they have sent me the information... my GP says urso only leviates the itch??????????????? so, yes i will take in the info when i go back next week.

    x

  • My GP said the same thing. I am currently not taking Urso until my tests are definitive on the PBC (Biopsy results say PBC, blood tests no PBC, also my liver enzymes are not even at stage 1 PBC, more like pre-pre-PBC) I wish the specialists and others would communicate with each other.

  • Posh, I too spend time researching PBC. Some conflicting information but one thing that most doctors agree on is that PBC is a very slow progressing disease. Some people have probably had it for years, with no symptoms, before they are diagnosed. It's normal to feel very down while you're fighting this infection. Focus on getting over this before you take on the bigger picture.

    Doctors are much like the rest of society, some are wonderful and some are jerks. Hopefully you'll find one that is knowledgeable about PBC and is also a kind, caring person.

    Good words and advice from Kosy2 and Jtxx! Keep communicating your concerns, we are here to help.

  • It is difficult when you are first diagnosed. But unfortunately it is a fact that there are a huge amount fo diseases that can affect the human body. Some more rare than others and it is impossible for all doctors to be au fait with them all.

    As for support, I think its the same really... I think sometimes doctors love to be expert in something and to be honest few are in PBC. Therefore they are sometimes offish purely as they don't want to say... "I just don't know"

    To be told a diagnosis by letter, really is awful, i would be tempted to write to your consultant and tell him just how shocked you were and much it upset you. Maybe he will think twice before doing the same to someone else!

    10 years on for me, I still get odd reactions from certain doctors, but I have more confidence now to pull staff up if they are wrong or even rude. BTW I too had a stomach infection when first diagnosed that took a long course of mega antibiotics... it wasn't pleasant but after treatment, i felt so much better. As Jtx said, i would send him a copy of the leaflet for GP's which is readily available. This will tell him some of the basics if they are not in place!

    Just one other thing. We are ALL responsible for helping to educate others about this condition. I usually carry a leaflet or two and give them to doctors and nurses when I am a patient... I have even given leaflets to my dentist. Also ask your local volunteer or head office about putting posters and leaflets up in you local surgery and hospital clinics, they can send you the posters to put up next time you are at an appointment. The more awareness there is, the more people will learn about the condition.

    Hope you feel better soon but I will just mirror what others have said.... dont think about getting worse... many of us live with PBC we don't become PBC! x

  • Can I just say the first thing to do is seek out another doctor and get a second opinion. You are your best advocate do the research make a list of questions and ask them all. I started my liver disease over 25 years ago and 8 years ago pre op for a back surgery it was revealed that I had Hep C and I did a year long treatment with Interferon thought I was good this years physical revealed PBC so like I said I did the research and went thru 3 doctors until I found one I liked enough to get passed the intial consultation. These doctors seem to think everyone that has this disease made poor choices and as a result wound up with this disease like IV drug User, Alcholic. I am now on Urso but that treats the PBC after 4 months I will revist doing another roung of Interferon to treat the Hep C. Urso only treats the PBC not the under lying issues. Hope it helps !!!

  • thanks to all ... judy 48, hope you are getting better now. I feel like its one thing after another just now, after leading a fairly illness free life up till now.

    I do have things to look forward to, ie getting married in 12 weeks time, and i am trying to focus on feeling better for that. the antibiotics i am on just now, dont make me feel that great unfortunately, so its not easy just now. On the up side, i had a CT scan which proved there is nothing else going on.....

    this site has been a huge help!!!!!!!!!!!!!!!!! even if its just to vent emotions, eetc.

  • All of the above is good advice. Here are my two cents worth. I was also told about PBC via email, unconscionable! If you have the energy or someone else can do it for you, please write to that practice and tell them how terrible that was and cc their supervisors. Try to focus on the immediate issue of the infection and the inevitable side effects of the antibiotics. You need to be well for your wedding so you can enjoy it. As for living with a chronic illness, I have lived with lupus for 40 years and while it is challenging, to say the least, it can be done. Basically what I do is I divide my life into moments or times when I have to deal with disease and health issues, but I try very hard to still live my life the way I want to, even if occasionally I have to make concessions or adjustments to my life because of lupus, or fibromyalgia, or PBC (or the kabillion other things wrong with me). We are people who happen to have an illness (or 2 or 3) not disease with a person attached.

    And congratulations on the wedding. Having other things to think about like weddings, yeah!, is a good way to help take your mind off of PBC. I think that you will naturally think about it but it doesn't have to be something that ruins your life, or runs your life. Take Care Ruth

  • I had my diagnosis on the answer phone - and the doctor spelt it out, wrongly - and then told me not to look it up as it would scare me. That was over 9 years ago - I still don't have the itch or fatigue but I do have painful arthritis. I have just changed doctors ( I know, I should have done it years ago. ) and am undergoing blood tests for various things. Will let you know.

  • Kaywire

    Just read your profile and I don't think you sound like you are "completely barking" at all. One of the others says it's like 'bugs'. Whatever we want to call the feeling it definitely isn't comfortable.

    It is hard to believe, but know it's true, how some doctors refuse to admit that they don't "know it all" and can actually be quite rude. so glad that you finally changed.

    Posh =

    Please keep us informed as to how your appointment goes on Friday.

    Concentrate on your wedding plans -:). We all understand how one can get "down" but for me I try (don't always succeed) to look at it as "this is a test. It is only a test. I can get thru this" since God promised that He would n't give me any more than I can handle. I sometimes think that He has a whole lot more confidence in me than I do. -:)

    Stay strong = you can do this. -:) ga

  • I can relate to your experience as since jan 2011 I jave been having really bad stinging pain. Bruising, hair loss all sorts. The gp said ther was nothing wrong with me physically and ot was all psycholoical. I persisted and went private as I knew something wasn't right and eventually blood tests showed psotove amas. This gp still maintians there is nothing wrong with me. I can't be responsilbe for her ignorance and I escalated a complaint o the practice manager. Thankfully my rheumo and hepatologists are great - its just the gp who needs retraining or to retire.

  • Posh I really understand where your coming from, I find it all really frustrating. Its took 2 years for my diagnosis and I feel like I've just had a bomb dropped on my world and left to deal with it. My GP is great, but the gastrologist is a really nice guy, but really doesnt have much to say. I keep asking questions, but never really get any answers. I don't talk to anyone about all my aches pains, fatigue, itching because when they do ask me about the condition I really don't know how to explain it because its not been explained to me. Good luck with your wedding and keep your chin up.

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