1. < Autoimmune Diseases

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 Support Group.

jackieg | @jackieg | Jul 30, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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The pill cam was unbelievable to me. The camera was in a capsule case that u swallow. Not as hard to do as I thought it would be. Then they put a belt with a monitor around ur waist and make sure the camera is working. I had to wear it for 8 hrs and watch to see a blue light flashing which is the camera moving its way through ur small intestines inking every second as it takes pictures. I had to make sure it stayed on my belly button the whole time. If it stopped blinking then I'd have to go back to office bc that would mean it came out. I didn't want to start over so I came home and was afraid to move. I felt like I was in some kind of sci-fi movie. Didn't really know what to expect. Lol. All went well and they took it off after 8 hrs. I do distinctly remember her saying it cost $5000. I believe I passed it the next morning since I saw something silver in my stool. It was painless test with results in 2 or 3 weeks. It's funny to me now. Didn't know if it would blow me up or what but all is well. U r right technology has certainly come a long way.

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jackieg | @jackieg | Jul 30, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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Oh they haven't mentioned transplant and at my age I can't imagine they will. I'm a young 70.

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jackieg | @jackieg | Jul 30, 2016
In reply to @colleenyoung "Hi @jackieg. I want to add my welcome to Rosemary's. Glad to have you join the..." + (show)
@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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How do u feel. Can u tell if ur disease has progressed. What meds do u take.

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Deena | @mrsdeecee | Jul 30, 2016

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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1 reply
Deena | @mrsdeecee | Jul 30, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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You are lucky to find such a great doctor!Sounds like your in great hands ! Very happy for you Im so tired will share in am have pbc and others problems have some formal medical schooling ànd hope to help and be heped good nite and bless us all Dee

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Deena | @mrsdeecee | Jul 30, 2016
In reply to @colleenyoung "Hi @jackieg. I want to add my welcome to Rosemary's. Glad to have you join the..." + (show)
@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 you Colleen nice to meet youDee

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Deena | @mrsdeecee | Jul 31, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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

Jump to this post

Its safer than a EUS that's when they put like 30 feet of camera down your<br />throat your under but woke up in so much pain this was 2010 Not only do I<br />have PBC Drs said I was at highest rate of pancreatic cancer I wanted to<br />know why well about a year or so they seen residue from a stone that was<br />pushed in pancreas for years?From EUS test! Pancreas is a gland not an organ ? Going for<br />blood work and discussion about damage to pancreas I am 53 now and have no<br />energy I am going to be treated holistically traditional Chinese medicine<br />don't think I am candidate for liver transplant? But I'm in NY drs in NYC<br />in Ohio they do pancreatic bile duct transplants they always leave your<br />pancreas in incase of brejection I thought going to Sloan Ny Presbyterian<br />Cornell and Columbia was my best bet! I want to try the pill test sounds<br />great and instead of liver biopsy there is a fibro scan for liver? Good<br />luck God Bless Dee<br /><br />

REPLY
Deena | @mrsdeecee | Jul 31, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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Not till stage 4

REPLY
Deena | @mrsdeecee | Jul 31, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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

Jump to this post

Jack do you what the pill test is called? Interested Deena

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 31, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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

Jump to this post

Everybody's body is unique. And everybody will respond differently to some treatments. That is why it is good for you that you are being monitored by your highly qualified physicians. Listen to them. This is new to you, but familiar to them. I remember one of my doctors telling me that you could look at 5 patients with the same liver disease, and each might experience different symptoms. And no one knows how fast or even "if" it will progress! Medical research and advances continue to discover new treatments and medicines. For now, focus on "now" and let your doctors do their doctoring! You are not alone. Rosemary

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