my son recently had a sore throat, headache, severe fatigue and stomach pains but no fever. I took him to his gp, they said it was a viral infection and that it just needed to run its course. he was still sick a week later, I took him back and was told to just wait it out. this dr admitted not knowing anything about psc and it’s symptoms. what signs should I look for in a cholangitis attack?
Hi Michelle,
I am kind of new at this as my husband has not had much for issues, but this was my understanding of symptoms (what the doctor keeps telling us to look for): right upper quadrant pain, flu-like symptoms-fever, body aches, chills. I'm sure others who have been experiencing this disease a lot longer can tell more, but hope this helps. Hope your son gets to feeling better soon.
Lisa
My experience is that an attack can have different symptoms. I had one attack that involved sudden -- in about 6 hours -- onset of hepatic encepalopathy plus seizures, and another attack that looked like severe reflux for 12 hours culminating in vomiting.
Did your son get a liver function blood test? That seems like that should be the first thing. I'm guessing your Dr didn't order that since you don't mention it.
no the dr. did not order any blood test. they just said it was a viral infection and to let it run its course. this was the family doctor not the specialist. they do not understand the disease and sometimes it feels like they do not listen when I try to explain
As I understand it, a cholangitis attack does damage to the liver. A bile duct blockage causes infection in the surrounding liver tissue, which results in the infection-like symptoms, and the infection causes scarring int he liver tissue.
Which means that the Dr's wait it out approach isn't good, though I'm not an expert, I'm just going by what I've learned over time. Can you get in to see your specialist or does your insurance require a referral from your primary Dr? Can you get your primary care Dr to talk to your specialist?
Oh my! Demand lab work for your child. Perhaps some antibiotics can be ordered as well. My fiance has his PSC bugs similar this often. He's a trooper and toughs it out; I bet only because he knows the drill though. In the past a week supply of Cipro would be given to kick the infection. As the bile builds and sits in the body it will create a septic tank type of environment that bugs love. He may, God willing flush it out quickly and bile stones will not develop. My fiance had pain earlier. I made tea, he stretched, and went to bed to try to sleep it off. Our bodies go to work cleaning at night, as I'm sure you know. Have your son rest, stay hydrated, fuel up with Vitamins and let's hope your doctor whips up lab work for you. I know it's hard to see your loved one uncomfortable and I'm sorry you have to deal with this. As a mother going through this adventure... I don't know how you do it! Prayers for your strength and for your son's comfort are in my heart. Keep us posted. Take care.
My daughter's specialist told us she will have colds and not to worry about those. However, if she develops ruq pain, fever, and urine starts to darken to take to the Emerge department. I hope he is feeling better. I hope you are doing well.
thank you gloria and deena. I have taken him to the emergency department for urq pain and other symptoms, but since he never runs a fever they don’t take it very seriously. I haven’t met a dr in the er dept yet that knows what pcs it’s. when I explain that he’s on urisidiol they have to look it up. very frustrating. he’s scheduled to see hepitologist soon and I have lots of questions I hope to get answered. thanks everyone
Dear Michelle,
I totally understand how you must feel. My daughter has PSC, UC and Kidney Disease. How old is your son? I was told by her her specialist that unless she has unexplained fever that is unaccompanied by a running nose etc do not worry. You must be constantly on alert. All you can do is try to educate yourself as much as possible.
My heart goes out to you.
PrincessD's Mum
I had a cholangitis attack with no fever. I was hospitalized and given antibiotics IV. I had URQ pain and because the Drs. Do not know enough about PSC they kept telling me it was muscle pain because it was so close to my ribs. I asked the nurse for my records. Perhaps they were trying to console me with the muscle diagnosis, because my chart indicated PSC. My primary physician who has been practicing over 30 years told me I was her first patient. Through this group I have educated myself to a certain degree and I let her and my GI dr. Know, I know more than they think I do. Or I know more than they want me to know!!! I say, good for me… Nurses came in my room and they all told me they never heard tell of this PSC. The top surgeon read my medical history back 40 years ago when I had my ileostomy surgery. She told me I was the most mystifying medical specimen she has come across. So my advice. If you feel it is your PSC making you sick even if you don’t have the book mark symptoms, go to the ER. Tell them you have a liver disease and the symptoms you are experiencing. They will take you right in, because they know nothing about it. I even had to spell it for triage in the ER. We are a special people who deserve the best of care. So, we settle for nothing less. All my Drs. Except one tell me I’m a learning experience for them, because I know my own body and what they know comes from text books.
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