16yrs diagnosed

Hi all, am new to this site and have had a grand aul time reading everyones posts. Helpful and enjoyable. I was diagnosed 16yrs ago and have only had the tiredness and nausea, the past few weeks the dreaded itch has started! I have booked an appointment with my GP this friday as I have been feeling run down and i tend to know when my Liver isnt happy. I suffer from a few other autoimmune ailments also, Raynauds, Granuloma Annulare, overlaping autoimmune hepatitis (which comes and goes) and reoccuring autoimmune Uveitis! wonderful I know!! only take meds (URSO) and a anti-nausea tablet so meds wise am doing not too bad.

I have a wonderful specialist that explains every stage to me in terms I can really understand, although when she described me as hanging over the edge of a cliff and she wants to know where the emergency pull cord is (when I didnt want endoscopy lol) I was a bit freaked out but she made me realise the importance of having certain tests done.

I have had 3 biopsys over the yrs and one endoscopy (which I dread repeating as it was horrific but necessary) i am at stage 2 of the PBC and finding times difficult with everything else I have going on, i am 38 with 3 boys 19, 17 and 2! and now have a little grandson so plenty to keep me busy.

I work full time at a local college which at times is extremely difficult as all i want to do is hide under my desk and sleep!!! but i push on and rest more that evening when I need it (not easy with a 2 yr old lol)

I have a supportive family and friends although i dont talk about my PBC to anyone so I am here to vent if needed and read all your comforting and helpful posts

Here is to new friends ;)

9 Replies

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  • Welcome suzmcintyre08,

    Refreshing to hear that even though you have been diagnosed for so long you seem to be coping pretty well considering your other conditions.

    I am 52 with 3 boys 25, 23 and 14, not a grandmother yet though!! I too get very tired and struggle with concentration. I also have joint, bone and muscle pain but thankfully (touch wood) I do not suffer from the dreaded itch so many others seem to have. I work part time, 2 x 8 hour days and the following week 3 x 7 hour days.

    By the way, this could not be a better place to vent your feelings and share your experiences with others who understand exactly what you are going through...its an excellent site.

    I hope you do not mind me asking, but why did you need the endoscopy, was it because of the PBC or something else?

    Regards

    Cheryl

  • Hi Cheryl

    Thanks for your reply, its great we can chat about our worries here, such a relief and comfort knowing we all experience the same things and can find answers here. I dont have too much trouble with joints except for my arms (elbows and wrists) which have become very weak, my 2yr old has more power in has arms lol

    As a teenager I started suffering terrible stomach pains and after lots of trials with meds for Ulcers the doc ordered an ERCP to be performed where they discovered I had Pancreas Divisum and with a small procedure it was corrected although I got the complicated pancreatitis from the operation which is when they dicovered the PBC.

    The endoscopy I had last year was to check for varices, which they found but not troublesome at the min so they dont need banded but I am due to get it repeated in the near future to keep an eye on them. I have some scarring which they were able to check with the endoscopy as well.

    My hosptial consultant is really good and makes sure I have any necessary tests done as I have PBC so long and she explains things using terms I can really understand. I see her once a year but she told me if I noticed any changes to make an appointment, the itch is only recent with me and not debilitating (at the min) just embarassing at times when I forget myself and friends or family will ask 'what are you itching at' :( and when I am at work I can forget I am sitting at the main reception and be sitting there happily scratching away! So I am for my GP this week to report the itch to see what he thinks!

    Again, thanks for your reply I really appreciate it :)

    Suzanne

  • Hello and welcome. I'm fairly new to this site too and absolutely agree that the support and advice from fellow sufferers is priceless. It amazes and humbles me when I see posts like yours and realise just how many additional conditions many of our community endure and how selflessly others share their experiences and wisdom.

    Logging on every day has become one of my guilty pleasures and highlights of the day as I feel part of an amazing supportive group with whom I can relate and feel secure and able to be honest and express my fears without fear of ridicule or judgement - which, with the best intention in the world, our friends and family aren't always able to provide.

    Whatever the future holds for any of us, knowing there's this wonderful support available from such a close-knit group as ours is priceless.

    Thank you to all my fellow sufferers!

  • Hey Winding

    Like yourself I have been logging on every day and reading everyone elses stories, it gives me great relief at times knowing I am not alone in all my worries and woes.

    Like you said sometimes our nearest and dearest just dont get it, my hubby has a bad case of the 'whats wrong with you now's!' so knowing I can log on here and look at others posts and post myself and have lovely people like yourselves reply is a great support

    Here's to us all being here!!! :)

  • Hello and welcome, I'm new on here also and find myself logging on everyday it is comforting to know others with the same condition are there for us. I was diagnoesed with PBC in 2004, however I have only recently started on the urso and quantron powders due to the itch, nightmare. I find it hard keeping myself awake of a day time, I also work full time so exhausting. I have 4 daufgters age 36 31 24 22 and 4 beautiful grandaughters they all keep me busy but don't understand this PBC thing. I was wondering what stage 2 is? I have heard of stages on here but have not got a clue about the different stages. You must be kept busy with your 2 yr old but I think it's a good thing to be kept busy. x x x

  • Hey Sydney

    I have been reading up on these stages myself but the way my specialist explained it to me is stage 2 is when varicies and scarring are found but are not threatening for the time being, stage three is when they become a threat and need treated with banding or watever before stage four which is liver failure. It took me quite a few yrs to go to stage two and I am hoping and praying that I stay there.

    Life is keeping my busy as is work so take the rough with the smooth and rest when I can or really need to. I think having a positive outlook is very importand and I concentrate on being a mum to my 2yr old so he keeps me going as I am sure your grandaughters do for you too! children are such a blessing x

  • Hi Suzmcintyre are you in the UK? I am from N.Ireland myself and have never had the stages of PjBC discussed with me and often wonder what stage I am at. Having said that I dont let it worry me too much just basically go on how I feel on a daily basis. I am due to see my consultant next week so will have all the questions ready for hi and will post a blog on here after that. I have two children one 16 the other 5 so I know what you mean it never stops running round after kids, I also work part-time and at times feel I am just going to drop but thankfully with good support from my fiance when I get some rest recharge the batteries I keep going. Having read so much on here I am just glad at the moment I can still hold it all together even if some days are a struggle. I try to stay active and positive in body and mind gets me through everyday life. Bfn:-)

  • Hi im from NI and scared, been reading a few posts on here and good to know we are all in the same boat.

  • Hi Littlemo, I am also from NI, only had the stage discussed with me at my last meeting with my consultant as she had never mentioned stages before I didnt really give it much thought. I have a notion that beacuse I swore to her I would never ever had another endoscopy so bad was my experience that she was making me understand the importance of having it repeated at a later date. I am still undecided and am going to try to fight for some sort of sedation although i cant see it happening myself.

    Dont worry if your consultant doesnt talk about stages, it all depends on what tests you have done so they can determing how the PBC is progressing and remember that a biopsy can present different stages in the same biopsy so stages remain only a guide and blood tests to measure bilirubin is a better guide (i think) Its worth asking your consultant if it has never been mentioned before.

    You seem to have the right outlook keeping yourself busy and active and concentrating on life day to day, I would love to be more active myself but need to wait for better weather as Raynauds gets me badly in the cold so am too sore to do much at the min but I run about the house after my baby and playing with him is activity eneough when the weather is bad, roll on sunny spring (i hope!)

    Let us all know how you get on and I will look out for your post

    Best of Luck ;)

    Suzanne

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