Help!

[Shirley72]

Hi everyone , I'm a newby to PBC, although been attending hospital since October last year when I was treated for liver failure. To this day, the docs still don't know what caused it! I stayed in hospital for over a month . My LFT s were sky high with the worst jaundice ever. Eventually was discharged still with high LFT s. Various specialists, tests biops etc to  now avail I have PBC. Like all you lovely people on this site I've been fearing the worst as my own Gp has been a little vague in my condition. I've been priscribed with URSodeoxycholic acid. Really just looking for any pointers folks in how to  manage this condition. I'm 43 and a relatively fit woman .until my episode last year had never been in hospital. I'm feeling really tired all the time. I do go to the gym but it's a fight sometime. Again just looking for some tips etc on lifestyle , diet etc. Many many thanks. 

[Hidden]

Hello Shirley72.

I was 45 when I started to itch intensely early 2010.  By December 2010 I had been diagnosed with PBC and started on the urso (ursodeoxycholic acid).  My path to diagnosis was pretty much via bloods.  I had itching and at the time fatigue (didn't think much of that as had been working full-time for many months with only a day off once a week (bane of retail and being a manager in small shop).  I was found to have the antibodies that gave diagnosis.

The GP I was with at the time hadn't heard of PBC and printed out some info on PBC that the NHS uses and it wasn't that good plus I had already seen it online myself.   I did request a free dvd by Liver North that is all about PBC (it is free, fill your details out online, I'll pop their site on here) but didn't watch it all, only the early parts.  MY husband however watched it all.

I did ask the consultant pre-diagnosis and after diagnosis about diet and any changes to it and he just said to continue with what I considered a healthy diet.  Apparently there isn't really any changes that are specifically needed with PBC but in my view given bile is needed to break up fats, I think it is a good idea to not overly-indulge in saturated fats myself.    I personally don't think dietary changes will make a difference to having PBC as in it will stop any progression, I do think though that by keeping as healthy as possible with having PBC it might pay off and ward off anything else we might succumb to.

British Liver Trust have a PBC leaflet online you can download and glance through plus of course there is PBC Foundation for any information too.  I receive newsletters from Liver North but they do upload them online so you can see back issues anytime too.  I also receive Bear Facts from the Foundation.

I have had changes to the itch since taking the urso for over 5yrs now.  I tend to itch later at night and it does cause broken sleep which obviously can have a knock-on effect later in the day by making me feel tired come evening meal time.  I tend to eat pretty good at breakfast and lunchtime and then taper off with the evening meal as I find I never feel very hungry come early evening.

I only attended the hospital for a year following diagnosis as I had improved blood work and I hadn't gained any further sympton, the only one I knew myself was the itch as the fatigue had vanished at some point during 2011.  I spoek with the consultant and he agreed with me he would discharge me with the condition if needs be in future I would return.  I've been pretty much OK since later 2011.  My bloods bounce up and down a bit but nothing so far untoward.  I attend the GP surgery at intervals for the bloods and I find my GP surgery hard work (I swapped surgeries twice since diagnosis and found them to be the same).  I had last time the GGT blood missed that tends to be taken with liver conditions (the consultant made a point of this back in 2011) so I keep a track myself each visit what I am having.  I then request a print-out of them from the surgery so I can look.  I don't dwell on them, just like to keep myself in the loop too so I might be able to ask any questions if need be (after all a GP can interpret blood results).

The PBC Foundation do a leaflet specifically for GPs.  You can request they send you one that you can take in.  I found my GP surgery wasn't that bothered.

Over time I just got on with life and I prefer to enjoy life as best I can now and don't worry about what PBC might become.  In my mind no point worrying now as it might just never happen.  I choose to deal with things as and when myself.  I do think you need time to get used to having something that will never go away unless some cure is found and then as a year and another year and so on passes you just take it all as it comes really.

I do a lot of walking myself and try to keep on trucking.  Some days I don't and if I know I'm not to be somewhere then I can potter about.  I do find though that even long before PBC appeared, I found myself feeling sluggish during the colder months (I am in the UK) and then I start to come really alive in the warmer months.  I think at the moment I am just re-awakening for the warmer times and lighter nights.

[Shirley72 in reply to Hidden]

Hi Peridot,

Thank you for your encouraging words. I certainly shall check out hose websites too.

Thanks again

[LindyRich]

Peridot summed it up very well.

The one thing I would like to add is :- don't GOOGLE it!!!

I did and scared my self.  Others on here said that there is a lot of incorrect, outdated and scary info on the net.

Most of the symptoms you will possibly never get.  Deal with any you do get as they occur. If they occur.

Don't be a victim. Try to live a normal life.

Best wishes

[Hidden in reply to LindyRich]

Agree there LindyRich.

There seems to be a lot of nonsense regarding PBC online.  Best sticking with more trusted sites that you may have heard of (I had heard of British Liver Trust prior to being informed I had PBC).  Also in the UK the NHS sites can be a good source to a point.

I originally stumbled across PBC in a library reference book before I had a snoop online.  I did after being diagnosed with PBC request a leaflet they had that they lent via reservations but when I got it I declined as it was one by British Liver Trust that I had seen online.

[Hidden]

PS  Sorry forgot to paste the link in to Liver North, here it is and the other..if you haven't already had a look for them...

livernorth.org.uk/

britishlivertrust.org.uk/pu...

[Jaxter]

I agree with Peridot and Lindyrich, read the facts, look after yourself, try to get regular exercise (I walk when I can but mainly run around after my two year old), stay clear of the Internet, everyone is very different with this, someone else's path may not be yours. Deal with changes as they happen and do your best to enjoy life xxx

[teddybear7]

The PBC foundation has all the info I needed they've been  a great help to me. Xx

[Angelsww]

definitely look up the hospital sites such as Birmingham liver unit, liver north etc as shown above. They have the most uptodate info as they are the ones doing the research, Everyone else inc the foundation get their info from these sources.

Its very frustrating that after all the years that PBC has been known about, and all the education that apparently is being given to GP's. that many GP's still do not know the basics of PBC and other autoimmune liver disease.

I have said for a long time that there should be a big joining of all liver support groups and someone like the liver trust should take it under their wing, and have a mass resource for patients and clinicians alike. It seems that independent charities have to do so much fund raising just to stay afloat that they cant really offer that much support where it is needed, and are certainly not getting the message out where it needs to be.

As said above, try to stay active, but don't be hard on yourself, you will hear about people who claim to have severe PBC and who cycle huge distances, or do other mammoth tasks of endurance... well good for them. For many others this is not possible and we shouldn't be made to feel guilty. Just try to get some regular exercise what ever that means for you, and try to stay positive. If you have a few bad days, know that you will come out the other side.