I am slightly confused by PSC flare ups? In all my reading I haven't come across this term. It seems to me that PSC will progress as it does but none of the researchers ever discuss this issue. Can someone please clarify what what a PSC flare is?
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I think a flare up may be different for everyone as this seems to be a reoccurring theme with PCS. For me personally, on the surface I have no symptoms accept itching (which is not bad compared to some but I am on ursodial for it and slightly high liver enzymes. But my flare ups happen about once every 18-2 years where I get a gut wrenching unbearable pain and land in the emergency room and am hospitalized for 3-5 days with my liver enzymes as high as 2000. Then all is back to normal until the next one. I have no impending symptoms prior it just hits. June 2012 was my last time and now this has been the longest without a flare up. Hope this helps....Bottom line....this disease is different for almost everyone!
Google cholangitis, which is inflammation of the bile ducts. (don't google with PS "primary sclerosing" part of the disease). Bile ducts can become infected and cause symptoms mentioned in these other posts. For now, my husband has been able to ward it off by having his antibiotic on hand all the time... traveling, weekends, whatever, so he never has to wait to get a prescription if the symptoms begin. There is never any doubt of when it is coming on. Flu - like in nature- headache, fever, chills, worse fatigue than usual ... but the familiar and identifying URQ pain (upper right quadrant). He was hospitalized twice so far for it. It can go into sepsis if you are not careful and don't address the issue at the get - go. So, after, his MD told him, "hey, have your antibiotic on hand... I trust you to know when to take it." You must take the whole round of it and it is smart to replace the good bacteria that are killed with a pro-biotic so it doesn't mess up food digestion. Also, check out the nutritional part of this forum in relation to going easy on the demands you make on your liver's production of bile (ie- fatty food = high demand for bile production = tough times for your tired and weary liver). Good luck.
Thanks Stephen, I haven't had anyone state that way and it makes since. I am seeing a new Dr after the last one and he is the one that finally diagnosed me. About 2004-2005 my enzymes were slightly elevated but the my primary wasn't really worried and after a couple of years they were back to normal. My first attack was 2007. I wasn't diagnosed until June 2012. I honestly don't really have any symptoms in between except the itching which started last year. I really don't get any warning, no fever or chills just WHAM feeling like I was hit by a Mac truck. This last hospitalization I became very juandiced but that was the first time that happened. My other problem is that I have had a gastric bypass and they can not do the traditional ERCP. They are saying at some point I may have to get it reversed. Also, thank you Glass Flower I do try to stay away for the foods that are not good for my liver. I will also check with my doctor next visit about the antibiotics but like I said I don't get the fever and the chills that are typical with an infeciton.
Don't know what I would do without you guys!
Desert Corgi
I have a gastric bypass as well and they placed a feeding tube at the opening of the bile ducts (a port). This was a terrible idea since it harbored bacteria around the site and the tube popped out three times due to infections. So, on the 28th I will have my bypass reversed. I will let you know how things go and if it was worth it.
Thank you Genki1, My doctor has said that they can do it the next time I have an episode but it would only be for a short amount of time. But if they become more frequent then that is when they would recommend it but my feeling is what kind of health would I be in at that point?
Good luck hope all goes well please let me know....
Desert Corgi
Good Luck Genki1 with your surgery today. Hope all goes well
Desert Corgi
Genki1 said:
I have a gastric bypass as well and they placed a feeding tube at the opening of the bile ducts (a port). This was a terrible idea since it harbored bacteria around the site and the tube popped out three times due to infections. So, on the 28th I will have my bypass reversed. I will let you know how things go and if it was worth it.
Just checking in on you Genki1, how did your surgery go? Hope everything is ok.
Take care,
Desert Corgi