Primary Biliary Cholangitis: I would like to connect with others

Posted by jackieg @jackieg, Jul 29, 2016

I've recently been diagnosed with this disease and don't know much about it. If you have info that may help please answer. I mainly would like to know how you cope with knowing it is not curable.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Have not been tested in 18 months had a hard time Im live on long Island NY by Conn. The many GI I seen were not good they would tell me your going to die and need chlorestetal meds? Horrible So started testing in NYC problem is one doc does one organ the specialist seen a lesion on pancteatic head over a year ago and had a long talk with Dr friend no more testing I can read all results but I have a horrible feeling all the time maybe diabetes ? Runs in family so how did the urso make you feel any energy? Numbers come down?waiting on my psncteatic dr to call tomorrow so maybe he could hook me up with liver specialist in NY presbyterian why did you stop taking it? Heard a lot of itch complaints associated with urso or is it coinscidence? So tired right now I need to know when you get chance thankyou so much you cann only learn so much from books Deena

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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I am so optimistic since I started reading all these post have a new out look on my life! I felt so alone one of the worst symtoms of pBS is look fine Its finally showing now I gave up 18 months ago and owe thanks to the staff wonderful ladys and all the people that have posted on here Im going to give a fight! I want my life my world back. I have all of you on my side and of course I am on all off your sides I know quite a bit on auto immune nutrition and will be my pleasure to share what I have learned and thank you Rosemary yes I will follow you around the site thanks Once I get a little more familar with it on my phone need to be on PC !and Yes Collene I meant what I said about that lady! Have a great night thank you all for taking my lonliness away so tired hope we all have a pleasant night and sleep well Deena

REPLY
@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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Fascinating @jackieg. Thanks for describing your experience with the pill cam. Mayo Clinic offers this information about capsule endoscopy http://www.mayoclinic.org/tests-procedures/capsule-endoscopy/basics/definition/prc-20012773, but I also like to hear people’s first-hand experiences.

@mrsdeecee, the device used is marketed under the name PillCam ™ small bowel capsule.

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@mrsdeecee

Have not been tested in 18 months had a hard time Im live on long Island NY by Conn. The many GI I seen were not good they would tell me your going to die and need chlorestetal meds? Horrible So started testing in NYC problem is one doc does one organ the specialist seen a lesion on pancteatic head over a year ago and had a long talk with Dr friend no more testing I can read all results but I have a horrible feeling all the time maybe diabetes ? Runs in family so how did the urso make you feel any energy? Numbers come down?waiting on my psncteatic dr to call tomorrow so maybe he could hook me up with liver specialist in NY presbyterian why did you stop taking it? Heard a lot of itch complaints associated with urso or is it coinscidence? So tired right now I need to know when you get chance thankyou so much you cann only learn so much from books Deena

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I’m on urso with no bad side effects. I was told itching is symptom of PBC. Haven’t heard of the other med. Dr can do blood work to find out if you are diabetic. Take Care

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@mrsdeecee

Stay calm stress is bad watch your diet low fat exercise and be kind to your liver a cup of hot water with lemon is the best in am they are making strides I have since 09 try to cut sugar aka carbs out no processed foods lots of vegis and fruit organic and free range I learned alot from Paleo anti immune diet would be my honor to help you but tired in NY I will leave you a post tomorrow I do know a lot of this disease you can live a long healthy life if you take very good care of you body and mind stress kills !

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Thank u for post. I will check out Paleo diet. I know nothing about it but I’ll do anything that will help.

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@colleenyoung

Hi @jackieg. I want to add my welcome to Rosemary’s. Glad to have you join the Connect community.
I’m happy to introduce a few other Connect members to this conversation about PBC. Please meet @ageorge714 @lorettanebraska @tiffanyandrews @bobbutler @mrsdeecee.

Jackie, you may be interested in reading this discussion about PBC and itching https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-primary-biliary-cirrhosis-5-yrs-ago-i-have/

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Thank u Colleen. I will read the links since I need to learn about this disease.

REPLY
@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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Thank u Rosemary. Haven’t gotten results yet but hope its good. If not I want to know that too.

REPLY
@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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They just called it the pill cam.

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I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!

REPLY
@mrsdeecee

I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!

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Deena, I can understand why you are frightened about testing. My question is this: Is it possible that the PBC is being ignored because the pancreatic issue is a higher priority? I mean, PBC is generally a chronic condition. I don’t know what you mean by saying you saw a “cold hearted” GI. But perhaps he/she just has a terrible bedside manner? If it were me, I think I would want anther professional opinion of what to do. Then I would move forward from there. Be patient! Medical appointments and procedures do not happen fast!!! I hope you can find the level of care that you deserve. Rosemary

REPLY
@mrsdeecee

I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!

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No doctors as off yet! Im going to look on PBC web site and see if I can find a doc that specializes in PBC because it involves liver biles ducts my case pancreas and could lead to kidneys? In advance could effect other systems , Last time I went to GI around the block, I live in medical central their are 3 hospitals in a 5 mile radius the cold hearted doctor was out he had a fill in dr a foreign dr could not understand I wanted my blood ran basic,liver profile ect he told me to take my pants off which I found odd? I thought he wanted to check my pancreas or liver for tenderness? He proceeded to put his finger up my anus without gloves I honestly felt violated my issues are in the right upper quad?? And did not give me a script for blood work!! Now you know why I am hesitant ha ha ha! That was about a year ago! Pancreatic specialist no reply from NYP?

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Rosemarie I post at night when tired, Im repeating my post ? Sorry Ill leave you a post tommorrow when Im not falling asleep its 2 am still up? Deena

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