I am newly diagnosed with PBC and am having alot of bloating and abdominal pain. I cannot see my liver specialist until August.

[PBC2012]

Any advice or help with understanding this disease, from a stand point of someone actually experiencing it, would be much appreciated. I also have fibromyalgia and arthritis, so I have a few obstacles in my way. Thank you for your time ...good to know I am not alone!

[kosy2]

PBC2012

Hi and a BIG welcome. My first suggestion to new comers it to be sure to read ALL past posts and add you comments as you read along. There is a massive amount of information already posted. If you still have questions don't be shy to ask.

You will find as I did, that you are amoung friends here. Always willing to share their knowledge and experiendes. As well as a shoulder to cry on when needed.

All the best to you.

[PBC2012]

Thank you for the words of support. I will definately read as much as I possibly can!

!?

[busylady]

Hi and welcome

agree wholeheartedly with Kozy2, read all the past posts. It does take time but its worth it.

Just to add as a top tip, everyone seems to have slightly different issues or problems, and these can change over time. Reading the posts from before will allow you to get help and advice in a "pick and mix" approach as and when you need it.

Always remember , you are not alone, and even if you need a moan or a sympathetic ear, someone here will help

Good luck and happy reading

x

[Val02]

Hi - we all are with you on this one - we know how devastating getting a PBC diagnosis can be, and it will take a little while to get your head round. (:

I assume you have been put on URSO? this may help with the bloating and adominal pain but it will take a while to work, usually they say a year for the full benefit. Apart from that, many of us have changed our diets to find food that we can cope with better. It is a bit trial and error but in general terms eat simply foods that are easily digested.

Have you contacted the PBC Foundation? They will give you the support and information you need.

Best of Luck

[dizee]

So glad you found this site.

The comments on the previous posts are great.

Re waiting til August! Could your doctor refer you to another specialist. 8 weeks is a long time to be uncomfortable for and less damage the better. Take care and good luck.

[zipitydoo]

Hi and welcome.

i agree with Dizee its a long wait until August. Its worth phoning his/her secretary and telling her about the pain and see whether you can be seen before then.

It could be down to diet or even inflamation could cause it. You really need them to see you to diagnose the problem and help you.

[PBC2012]

Thank you again everyone. My rheumatologist, of all people, and my psychiatrist are trying to get my appointment at the University of Michigan changed. They both agree that the end of August is far too long. Yes I am taking Ursi, 600 mg per day. My biggest struggle, besides the pain

,fatigue and total change in my lifestyle, is that June 21st will be three years

Since my mother died from non alcoholic cirrhosis. I told my psychiatrist that what scares me the most is without a transplant, and for however long I can fight this disease, I still know how the journey ends. As for trying to figure out the eating part......I am type 2 diabetic so I have to find the right foods, the amounts I can tolerate and still watch my diabetic diet. It's alot to absorb right now but I am so blessed I have found this site ....thank all of you for your support and words of hope ....I know you will see more from me to come. Thank you again ....I feel I have an entirely new group of friends and confidants!

[Tumbleweed41 in reply to PBC2012]

PBC2012

Have you ever tho't of contacting the Mayo Clinic?? Granted, it is in Minnesota, but they are very good about getting one in quickly. It might be worth a shot if you were able to get there. Their ph. no. is on their website and I know that most "urgent app'ts" are usually less than a week.

Take care and good luck

[HermansMom in reply to PBC2012]

I'm newly diagnosed too and have been waiting for over 2 months to see a specialist. And in the meantime, my GP didn't feel he knew enough to prescribe medication. I have 12 blood values out of normal range, some being 20X's what they should be, have pain and other symptoms. I feel I've probably had PBC for many years that has gone un-diagnosed. I finally have my specialist appointment this Thurs. and I have so many questions to ask. I wish you luck in August and understand how hard the wait can be.

[zipitydoo]

So very sorry to hear about your mum.

I think what you need to try to concentrate on is the fact that everyone that has PBC is not the same. In some it seems to progress quickly and in others far slower. Also research is being done all the time looking into the cause and the medications which could help us.

And dont forget we are here for you.

[PBC2012 in reply to zipitydoo]

Thank you zty .....I am trying to take in everything ALL M

my doctors are throwing at me. It certainly is a process!

[zipitydoo in reply to PBC2012]

i totally understand. I have fibro aswell plus every time i have blood taken it seems to show something else up. i have seen more ologists in the past couple of years that I ever new existed.

Having the PBC aswell of course means there isnt much pain relief for the fibro that is also suitable for the liver and its very hard to tell what is related to what...

[PBC2012]

So happy to find someone who honestly understands! My rhuemotologist has stopped my medications until further notice from my liver specialists. I feel cheated alot because all the things I love about summer have become very limited for me.

[zipitydoo in reply to PBC2012]

I take Amitriptyline 80mg at night and paracetamol and Nefopam for the pain. Not sure what the USA equivalent would be. I am allowed up to 4 of the paracetamol a day and 3 of the Nefopam. My liver specialist has ok`d these.

[Hidden]

Welcome!

I can recommend a good DVD on PBC, it helped me to understand the disease and it's symptoms. It's distributed by Liver North, another PBC support group in the UK. It really helped my family understand the disease, they didn't have to listen to me talk about it ~ again!

I wish you the best, so happy you found us.

livernorth.org.uk/

Take care....

[PBC2012 in reply to Hidden]

The DVD would be wonderful ...my family is struggling with understanding what's happening

[Jtxx in reply to PBC2012]

Hi PBC2012. I lost my mother 8 years ago and she also had PBC. My aunt has it as well. My mother had a liver transplant 20 years ago and lived for 12 years after that. Hopefully the Urso will help with the inflammation which is probably causing your abdominal pain. I know when my LFT's are high, indicating inflammation, because my abdominal pain comes back (mostly under my right breast and side).

You need to just remind yourself that you are not your mother. I know when my mother was diagnosed she had cirrhosis but I am fortunate and do not, as I am in the earlier stages of the condition. I also have complications with AIH/PBC overlap syndrome. It is sometimes difficult to know what condition is causing which symptoms but at the end of the day we all just have to live each day as it comes and try and make the most of our lives. A positive attitude goes a long way.

I hope you get a quicker appointment. One tip though is to make a list of all the questions you want to ask the consultant so that you do not forget anything.

Be as well as you can be. Take care. x

[KevinHall10_ in reply to Jtxx]

Did you mother pass from pbc?

[Jtxx in reply to KevinHall10_]

No. They think the anti-rejection medication she took might have contributed to her kidneys initially failing causing multiple organ failure. . They have also told me that I will probably die with PBC .... NOT FROM IT .....

[PBC2012]

Thank you jtxx for your words of encouragement . Fortunately the same specialist that took care of my mom will be taking care of me ....I trust them with my life....literally.

[littlemo in reply to PBC2012]

Hi PBC 2012 sorry I'm only now answering your question but I'm new to the site and delighted I found it to speak to people who have PBC and know how at times ti is very hard to live with. I agree with the others don't worry about the actual diagnosis and don't read too much on the internet can sometimes give the worst case scenario. I know two other women closely at this stage with pbc and find their info and support and that from the pbc foundation particularily the pbc compendeum a great source of info and support. Tha abdo pain and bloating could be a side effect of a med you're taking I've had the bloating quite a lo specially when I first started my meds and when have had to increase the amount of questran I take but it does subside once your body gets used to it. However this also could be symptoms of irritable bowel syndrome for which the first line of treatment is to watch your diet take a high fibre low fa diet, avoid spicy foods and things high in acid and caffeine and any possible triggers you may discover yourself. Best thing to do is keep a diary of when you experience the pain and bloating and write down all you have eaten, drank and meds and amount of meds you have taken on those days that way not only can you perhaps see for yourself what is causing the pain and bloating but also handy for taking along to the dr when you see him or her. Hope that's helpful and that you get relief from it soon it is horrible you have my sympathy.

[Cymru2009]

Hi. I have PBC and was scared rigid by diagnosis but my NHS consultant has told me to take the tablets and maintain my healthy lifestyle and it won't affect me for 30 years. I am 59 so have put it out of my mind beyond six monthly check ups. Ignore internet.

[Dinasmom]

I was having the exact same symptoms despite being on URSO for my PBC. It was horrible and constant. I had terrible gas and my alk phos remained high despite the medication. It was getting to the point that I worried being around people at times.

Everything changed when I decided to try intermittent fasting. There are numerous scientific studies on the web about it's benefits for many diseases, including liver disease. So I decided to try it prior to my next hep visit....and before he suggested adding more meds to my regimen.

After three days I noticed a difference. But now, after over two months of limiting meals to a 6-8 hour window, I have to say the improvement is nothing short of dramatic. I have NO gas problems at all! And all my liver enzymes dropped to well within normal range. For me, the addition of intermittent fasting to my daily URSO doses is making my disease easy to bear. I literally have NO symptoms any more.

So, long story short, I'd suggest doing some research on it, and consider giving it a try before you see your doctor. It sure helped my symptoms!