A Day in the Life of a PBC Patient
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- Опубліковано 29 гру 2016
- Gail Wright of the Canadian PBC Society talks about the symptoms that hinder a person with primary biliary cholangitis.
Primary biliary cholangitis (PBC), previously known as primary biliary cirrhosis, is a slowly progressive bile duct disease, which results from chronic inflammation of the small intrahepatic bile ducts.
For more information, visit pbc-society.ca - Наука та технологія
May God assist them and there be treatments discovered.
I am very early stage and what she said about fatigue is so true.
What do Yuh feel ?
They told my mom she might have it, she’s taking Rx Ursodiol.
@@jorgearobles5112 sorry just saw your comment hope she doesn't have it.
For me mine was severe fatigue in just after eating I need a nap because of the energy my body is using to digest food tires me. You are always tired and weak.
Itching but meds don't work because itch feels UNDER skin
Nausea and vomiting
Sometimes a bile attack that you just want to give up. That comes with days of vomiting straight bile not being able to keep sips of water down which causes extreme dehydration which hurts your whole body and system and makes your other organs hurt kidney and heart
Liver pain_ when it swells it feels like your rib is gonna break off and it hurts to breath normally
You also get mood swings similar to bad pms crying , anger, depression and over emotional on good things (because good days are rare)
Deep bone pain because it messes with your bones
Messes with cognitive thinking in times it is hard to know what words to use so you you basic ones memory loss hard to concentrate sometimes wrong words come out.
Malnutrition and malasorbtion
Multiple vitamin and mineral defiencies
Anemia that requires iron infusions or transfusion
Painful periods and pms
Painful temporary water weight gain that makes your skin feel sunburned and stretched out
*I am early stage but Urso is not working for me people vary with this diseases in some are better in symptoms later and some are worse.
@@biancajade728 Hello Bianca, thank you for sharing and opening up, I hope you feel much better soon and continue to be positive. Your a strong human ❤️.. my mom is taking Ursodiol 3 times a day to prevent bile buildup but doesn’t has any symptoms at all
@@jorgearobles5112 thank you and that is great. I am a non responder but sounds like the medicine is working on your mom. 😃 That is a great sign and chances are she is going to do well and has a good support system. But just keep an eye on her fatigue, weight loss, and lack of appetite those are first good indicaters of something changing.
thank you for this honest explanation.
As for the fatigue I use to think I was lazy, but could do nothing about it. When you tell the doc they give you a strange look like yea tell me another one. (Lie). My brain has gone on general strike. My short term memory is shot to pieces.
Thank you for this and for the work that you do, especially for those of us who can't do it.
It is the itching I dread. I haven't had that. But I have had multiple esophageal bleeds to the point I had a shunt (TIPS) installed and one bout of hepatic encephalopathy. Thank god for the internet or I would have only my daughter and husband to communicate with directly most days. It's the fatigue -- if I make plans, I end up cancelling. And the meds for the disease + Sjorgen's syndrome (dry mouth) have destroyed my teeth to the point I am embarrassed to meet new people.
Laurie Frost you're not alone. God bless you Laurie...
God bless you sis. Virtual hug. Terribly rough life. It rains on the good and bad alike unfortunately. That's one of the mysteries i will ask about in God's heaven. Severe suffering is another. But that's the way He made it. I guess in the comparison of eternity to our short life it's a blink in time but it doesn't fell like it. The poem I Walked a Mile With Sorrow by Browning goes "But oh the the things i learned from her when sorrow walked with me". Others will never know. Chin up.
Its crazy how ppl think i look healthy But im suffering from itching
I have several autoimmune diseases and am taking low-dose Naltrexone which is helping with many of my symptoms. I wonder if it wouldn't help themwith some of their symptoms. I had a stent placed during an ercp but the doctor perforated my common bile duct then the stent migrated out. I was down to 98 lb at one time. I'm still having problems. The itching can drive you crazy.
Do they ever use THC pills or marijuana? Does it work?
Ain’t that the truth the itching can make you go postal. People think you have fleas or something.but it drives you mad.
My grandad just got diagnosed with this ten years to live So gutted
Some say every day can be a lifetime if used to it's full extent. But for me this disease usually takes away your motivation.
Yes, like "Spiders" crawling up my back, under the skin, with an odd
tingling numbness, then the SO
annoying itching; I had to finally diagnose myself after my Docs could not put all the pieces together until recently, because of a positive antibody blood result~
Being that I have had Systemic Lupus for 25 years, this can be
one of the many complications of that also hard to treat disease...
Truly watching my chronic food allergies seems to help some and just have to keep on truckin' along somehow as we all do in this life❣:)
Bless you. Thanks.