I was diagnosed 3 yrs ago with PBC. I would like to know how many people here have had their gallbladder removed and or appendix?

[tealmust]

I have been reading what people post on here but have never posted. Does anyone know approximately how long between stages when on urso or is it different for everyone? My biggest issue is the not knowing. My doctor said to just go enjoy the time I have left but that is very hard to do.

[Hidden]

hes rt enjoy ur life..it varys from person to person i know of some who have had pbc for 20 yrs and r doing well ive had it for almost 2 yrs and am doing ok people say ur most likely to die with it then of it so try not to worry

[tealmust in reply to Hidden]

Thank you very much!

[Teri8672 in reply to Hidden]

Transplant is a option but only when your liver is in complete failure but you can’t drink alcohol nor smoke. I was 20yrs smoking but am on my way of quitting 100% keep your heads up where there’s a will there’s a way

[butterflyEi]

Hi tealmust

I was diagnosed in 2006 but presented to the doctor 10 years before that with symptoms that went un-diagnosed. I have for the most part remained well and continue to enjoy my life. I developed the "itch" in 2014 but by 2017 the doctors had it under control (well for the most part). I am not sure what your doctor means by enjoy the time you have left - if your PBC did develop there is always a transplant option as the last resort however having said that the PBC Foundation report that they know of a woman who died with PBC not because of it who was over 100 years of age. PBC seems to impact differently on different people however it does seem that once you have one auto immune disorder another will come along.

The best advice given is to eat a healthy well balanced diet rich in vegetables and fruit. Fizzy drinks are ill advised (I think because of the sugar content but not sure) increase your water intake to keep well hydrated.

If you have not already done so take a look at the information available on the PBC Foundation web site in the members section, PBCers.org have also lots of good information on their newly developed web site. The British Liver Trust has some information on PBC which is also helpful.

I have found this site to be an invaluable source of information with lots of lovely people who support one an other. Take care and keep in touch

best wishes

[tealmust in reply to butterflyEi]

Hello,

Thank you for the response! I agree that this site seems to be a very invaluable tool. When I was first diagnosed I think I was in shock and upset and I asked my doctor how long I would live with this because my first thought was I am going to die. He had said that it would shorten my life and that the average life expectancy with this disease is 7 to 15 years. He told me to consider 10 years. He also said there was nothing he could do for me other than give me the urso so he would only need to see me once a year. My year would go by and I would go in for my visit and he would say what I am doing is all I can do which he had already said so he didn't need to beat that in my head and give me the feeling that he just doesn't care. If I asked questions he told me I could google it but I don't pay Dr. Google, I pay him. My last visit he denied ever telling me to consider 10 years even though my mother was in the room also when he said it and I just get the impression he doesn't know anything so I quit going to him and my primary care doctor said he could take care of me until I need to be referred somewhere else and then he can do that for me also. I suffer from major anxiety also and his personality and the way he treated me always set off major anxiety attacks for me. Somedays I feel great like I will live forever and other days I feel dizzy, week and disoriented and no one seems to be able to tell me what is going on with me or if that is related to the pbc and in my brain everything is related to pbc because of my ignorance of the disease. Thanks for listening!

[Teri8672 in reply to tealmust]

I’m a 44 yr old woman have been diagnosed since I was 30 yrs old. Been seeing my GI in my town he states the same nothing they can do. I’ve been in and out of ER so much drs assume I’m a drug addict or homeless. I’ve now have at least 3 autoammune disorders. Now going to a GI at Ucsf they have the best. I can to this day not get a direct answer just waiting on my time to transplant I wanna live to see grandkids grow up. My mother and grandmother died from PBC and more autoammune diseases. Pray is all I got. My mom was 43yrs old when she passed my grandma 51. I’m allergic to urso and tried trial meds with UC Davis. I’m grateful I’m still alive. Just loosing weight like crazy. Went from 190 to 140 in these past 2yrs. Now have celiac too. Life is hard having PBC. But have your kids checked for your match it’s better to be prepared. And no doctor can say how long this journey takes. Im going on 14yrs. Keep your head up hope they find a cure

[JaneIng]

My gallbladder was removed 5 years ago. AMA positive for 4 years. No PBC yet but frequently struggle with acid reflux and nauseous.

[tealmust in reply to JaneIng]

Thank you for responding!

[Teri8672 in reply to tealmust]

I had my appendix removed went to Er for nearly a month with low ab pain nothing wrong they said a month later that one special dr did a cat scan guess what I had a tiny hole in my appendix with poop coming out could have died but some doctors just want to get paid they all don’t care about patients. Another dr said all we can do is keep you hydrated and make you comfortable because your gonna die

[ninjagirlwebb in reply to Teri8672]

That is horrible; what that doctor said to you. They all need classes in bedside manner in med school. Honestly...(shaking my head)!

[tealmust]

Thank you for responding!

[LorraineLouise]

I have not had my gallbladder out but my mother passed away from liver disease in her early fifties. Never diagnosed or treated properly for what we now know must have been PBC. I have PBC and my sister does as well. We both have thyroid disease though. Another autoimmune disorder. So it definitely runs in families. I too was told at first ,the average life expectancy was 10 years. Based on my drs experience with the disease and other patients. Although the disease is so rare most Drs do not treat many patients with it. I don’t worry. I just live a happy life as best I can and as pray that I continue to thrive with thus awful disease. My hope comes from this site and all the people who haves lived with disease for many many years. My best to all!

[tealmust]

I like asking questions I want to know because I want to understand what is happening with me and why. I am not happy with just sitting back and letting it happen and all the nobody knows that I have gotten so far from Doctors. I do not want to offend anyone but I feel the only way there will ever be a cure for this is to ask questions and compare similarities and differances. I was told that by a study facility that they cannot do studies because there are not enough of us to study but I read the posts on this site and think why not. There are a lot of folks on here with pbc. Study us. I appreciate your feedback and do not want to upset you with my questions. Thank you for ur responses.

[Teri8672 in reply to tealmust]

UC Davis does do studies in California.

[Cathyjo in reply to tealmust]

I had mine out in 1990 long time ago. My father and his mother my five sisters had there’s out my Mother died from gallbladder disease she didn’t know that where her pain was coming from cause she had RA and was in pain all the time, then three years ago one of my sisters who had her gallbladder out when she was 27 ends up getting bile duct cancer and lasted 9months! So when they told me I had PBC in Dec 2017 I was scared but it My be a blessing I found out early enough to try to manage it. Mine is hereditary ! I never ever drank or did drugs!

[tealmust]

Thank you! I appreciated reading your response. I am worried about my family also because most are girls and they say if affects women more than men. My son died as an infant and I have two daughters still living and I am telling everyone to be checked regularly so they may start urso if needed as soon as they can. I was diagnosed in stage 3. No one in my family has ever had any liver trouble that I know of but when my son was born they said he had something on his liver that they were just then becoming aware of and they wanted his liver when he passed away to study it. I wasn't told any more than that but he was only two days old when he passed and you are not supposed to get this I was told until 40 to 60 but I have seen on here it has affected people I believe in their 30's.

[raqs67]

Hi Tealmust, I was diagnosed in 1998 but had problems before this which I was accused of being an alcoholic. I had a 2nd biopsy shortly after my second child and this proved to be early stages of PBC. I've always worked full-time and this has been difficult but my husband has been marvellous. I was referred to Prof. Neuberger in Birmingham in 2002 because I lost faith in local consultant when I knew more than them about the condition. He and the liver team at QEHB have been amazing. I've had regular scans, mri and bloods usually 3 monthly and I was put on the transplant list last May. I was waiting only 19 days and had my gift on 3/6/17. I'm now back in work albeit a phased return but I'm still here 20 years later. I'm now 50 yrs old had my birthday last year. I never knew what stage I was just treated for symptoms. Good luck x

[tealmust in reply to raqs67]

Thank you for the reply!! I am glad you are doing well and I am happy you have gotten a transplant, I wish you all the best!!!

[Teri8672]

Enjoy to the fullest it gets harder and harder as the years pass by. And seeing a psychiatrist and a psychologist will help wish I would’ve seen one sooner. And keep your family in the loop I have an aunt that hadn’t seen me in a few months and said she is scared for me because of so much weight loss. My mother at her time of passing weight 70 lbs and I was her home care nurse took a toll on me and I’m not gonna put my sons through the same thing