Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 My daugher who was diagnosed in March has not had any attacks and I'd like to know what to exptect if she ever does. What do I look for, where is the pain and what do we do if it happens? What is the cause? Is it possible that some people with PSC never have an attack and is it most common as the disease progress' or can they occur early on as well? Thanks Kim, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 Hi Kim, My son is 32 he was dx in 1999, he is stage 4 and has never had an attack. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 My attacks have always started as a heartburn kind of discomfort, a tightness, like I have felt like I should take off my bra because it feels too tight but it wouldn't help any. Then it would become painful, sometimes painful enough that I was afraid I was having a cardiac event. The pain would go away for me usually within an hour or two, but then I would have fever, maybe nausea, maybe vomitting, a high heart rate, sometimes low blood pressure. I too am amazed that there are PSCers without attacks. My attacks are what put me on a search to find out what was wrong with me, and even then it took 3 years to put the pieces together. I had doctors telling me that these symptoms couldn't possibly be related to each other. I hope your daughter can always avoid them. dx PSC 6/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 My attacks have always started as a heartburn kind of discomfort, a tightness, like I have felt like I should take off my bra because it feels too tight but it wouldn't help any. Then it would become painful, sometimes painful enough that I was afraid I was having a cardiac event. The pain would go away for me usually within an hour or two, but then I would have fever, maybe nausea, maybe vomitting, a high heart rate, sometimes low blood pressure. I too am amazed that there are PSCers without attacks. My attacks are what put me on a search to find out what was wrong with me, and even then it took 3 years to put the pieces together. I had doctors telling me that these symptoms couldn't possibly be related to each other. I hope your daughter can always avoid them. dx PSC 6/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 From http://wo-pub2.med.cornell.edu/cgi-bin/WebObjects/PublicA.woa/6/wa/viewHContent?website=wmc+physicians & contentID=660 & wosid=r7tCh3lqHMIZg7VqhtFEbM Symptoms for cholangitis may be moderate to severe. The following are the most common symptoms of cholangitis. However, each individual may experience symptoms differently. Symptoms may include: pain in the right upper quarter of the abdomen fever chills jaundice - yellowing of the skin and eyes. low blood pressure lethargy decreased level of alertness Some people also report the URQ pain to radiate around to the back, in addition to dark (cola colored) urine, pale stools and extreme nausea. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 From http://wo-pub2.med.cornell.edu/cgi-bin/WebObjects/PublicA.woa/6/wa/viewHContent?website=wmc+physicians & contentID=660 & wosid=r7tCh3lqHMIZg7VqhtFEbM Symptoms for cholangitis may be moderate to severe. The following are the most common symptoms of cholangitis. However, each individual may experience symptoms differently. Symptoms may include: pain in the right upper quarter of the abdomen fever chills jaundice - yellowing of the skin and eyes. low blood pressure lethargy decreased level of alertness Some people also report the URQ pain to radiate around to the back, in addition to dark (cola colored) urine, pale stools and extreme nausea. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 > ... What do I look for, where is the pain and what do we do if it > happens? What is the cause? > Is it possible that some people with PSC never have an attack and is > it most common as the disease progress' or can they occur early on > as well? Kim, I classify attacks into those with and without infection. Signs of an infection are fever or chills. When these symptoms are present you should always seek treatment. When I have had bacterial cholangitis causing fevers and chills I have not had any pain associated with the attacks (perhaps I am lucky in that way). I delt with the attacks by taking oral antibiotics (alternating Cipro and Augmentin) at the first sign of an attack. My doctor discussed going on a permanent antibiotic rotation rather than just taking antibiotics when attacks occurred, but we felt I could be responsive to the signs of attacks and that full time antibiotics would increase the chance of developing resistant bacteria. Bacterial cholangitis is caused by the growth of bacterial in the bile when it is not flowing freely. Think of stagnant pools of bile behind strictures breeding up large quantities of bacteria. Attacks without fever or chills are going to be most noticeable when they cause pain. Jaundice, cola colored urine or pale stools just don't focus your attention like pain does. The attacks may require treatment if the pain is severe, long lasting or causing other complications – nausea, vomiting, inability to hold anything down. Blockage of the bile ducts causes this type of attack, which subsides when the blockage clears. Generally, if you can stand the pain there is nothing wrong with waiting for it to pass. In my experience, these types of attacks evolved into pancreatitis (probably because the blockage occurred near the end of the common bile duct) with extreme pain, nausea and vomiting causing me to seek treatment at the ER in the middle of the night. The timing of attacks is extremely variable. My first blockage occurred 3 years after high LFTs were observed and 15 years before I received a transplant. I didn't have any bacterial cholangitis attacks until after an ERCP and roux-en-y surgery conducted 6 years after my first blockage . In retrospect I think one or the other of those procedures allowed bacteria to infiltrate the bile duct system and start the cycle of feverish attacks. Tim R, dx 1989, tx 1998, PSC recurrence 2002, relisted with a 19 MELD Quote Link to comment Share on other sites More sharing options...
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