Last sunday i had severe abdominal RUQ pain, a bit of nausea that lasted an hour, but mainly extreme pain that took me to the ER. Mind you, ive been on vancomycin that has brought my enzymes down to normal for the last few months, last MRCP 2 months ago said no dominant strictures or beading… anywho, they drew blood in the ER last sunday and all my enzymes shot up, just two days prior my liver panel was normal, they wanted to do a CT but the on call GI for my hospital said not to do it because of the radiation, so we did an ultrasound of the bile ducts, liver, gallbladder to look for blockages/stones. By the time i got in for that (7 hours of waiting room) my upper abdominal pain had subsided. The ultrasound came back normal. They sent me home and told me to follow up with GI/HEP soon. Had me repeat labs a few days later and they were all coming down and the nurse suggested possible gallstone that had passed? Last two night sin a row i have had RUQ pain, like a bad stomach ache on the right side only where my ribs are. Woke up because i wasnt sleeping well and it radiated to in between shoulder blades. Didnt sleep all night because anything in this area just stresses me out with our diseases any pain or discomfort concerns me. I want to avoid any damage being done to bile ducts etc so having these episodes of pain concerns me that it could be damaging them. Like i said one nurse suggested gallstones, but then when i asked my liver doctor about it over the phone they said if we havent seen stones through your MRCP then that would be strange to have stones so WHAT COULD THIS BE? I am able to get into the GI later today, and liver doctor on Wednesday, but was wondering if anyone has dealt with this/what you think. TIA.
I’m no doctor, so the following is my unqualified opinion.
The most common cause of severe RUQ abdominal pain for people with PSC is cholangitis. Cholangitis can’t be seen on any form of medical imaging, since it’s a bacterial infection. It is generally diagnsed based on your symptoms and/or blood work. Typical symptoms are RUQ pain, fever and/or chills. If you have PSC and your CRP or ESR are elevated, you probably have cholangitis and you should be treated with iv antibiotics.
No offence, but you shouldn’t be discussing PSC with a nurse, since it’s so rare. Yet, not even most doctors know enough about PSC. Unfortunately, when you have PSC you have to know everything about the disease and how to treat every possible symptom.
If your CRP or ESR is now normal or somewhat near normal, you’ll be fine. Otherwise, it highly suggest convincing your doctor to get treated with iv antibiotics (standard treatment for cholangitis is piperacillin/tazobactam 4 grams 3 times a day) and get a bacterial culture blood test done (so that the doctor can see which bacteria that has infected you).
Best of luck,
I’m sorry to hear that you haven’t been doing very well of late. From your descriptions though, it sounds very suspicious to me that you have some blockages/strictures in your bile ducts. When was the last time an ERCP was performed? All the signs you are pointing to indicate such. Another possibility is if you have a stent in your bile ducts, that it has become strictured and infected.
As Andreas stated, you need to be discussing this issue directly with your hepatologist, not a nurse or GI doctor. If you already have a hepatologist, send a message through the patient portal to he/she. If things get worse, go to the hospital where the hepatologist works out of and ask that they page the on-call hepatologist. Preferably you are going to a major hospital that does liver transplants as they will always have a liver transplant doctor on call. I hope things get better soon.
Hi! thanks for responding. I never had fever or chills and in the ER i was assessed for an infection and they agreed I didnt have one, blood work didnt indicate anything other than elevated liver enzymes. I saw the GI today and he mentioned possible spincter of oddi dysfunction? Have you heard of that?
Hi Mark! I have never had an ERCP, but my MRCP from 3 weeks ago shows no strictures, no beading, very mild PSC so far. I was tested for infections in the ER and again through blood work on Wednesday and no sign of one. I am seeing a hepatologist on Wednesday but when i went to my GI today he thought its probably not PSC related. He mentioned the possiblity of sphincter of oddi dysfunction, wants me to try a muscle relaxer and get a HIDA test? Ever heard of this?
Hi again. I had never heard of spincter of oddi dysfunction but I did look up the meaning. Here it is.
Sphincter of Oddi dysfunction refers to the medical condition that results from the inability of the sphincter to contract and relax in a normal fashion. This may cause obstruction of bile flow resulting in biliary pain and obstruction to the flow of pancreatic juice, which can lead to pancreatitis. Here’s a link for more information from Johns Hopkins - https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/faqs/sphincter_oddi_dysfunction.html
Regarding the HIDA test, yes I’ve heard of that and had one in fact. " A HIDA scan is a test that checks gallbladder and liver function. A small amount of radioactive fluid is put into the body. This fluid will be seen on a scan as it travels through the liver to the gallbladder and into the intestine. It can show if bile ducts are missing or blocked. It can show if the gallbladder is working properly. It can also show other problems in the bile ducts." It really is a pretty painless experience and they will go over with you any potential problems that might occur. You are basically lying on a table while the machine takes pictures of your abdominal organs for about an hour.
I would encourage you before proceeding with these tests to wait until you see your hepatologist. Let him determine which tests you need. I really am amazed if you have large-duct PSC that an ERCP has never been performed. I’ve always been told it’s the gold standard of a positive PSC diagnosis. I’d certainly ask the hepatologist about this.
Good luck on your appointments and future tests. Hang in there and keep hope alive!
PSC 2011 / Liver Transplant 2015
My hepatologist so far has said with my UC diagnosis and minor narrowing duct and consistent climbing enzymes he was confident to say it was PSC without having to do an invasive ERCP apparently. Thanks for the link, i am going to read up on it but so far really burnt out on all these health problems. It seems to never end and I really dont know how much more i can take!
I’m glad you are seeing a hepatologist. Trust his/her judgment of course before any advice we might give on the forum for everyone’s situation is different.
I have had a number of times through the years that sound exactly as you described. I could never describe it so well. When I stopped taking in caffeine, it essentially quit altogether. I was drinking too much caffeinated stuff to try to get a little boost when I started getting really tired. Primarily soft drinks. That pain led to my first doctor visit and he wanted to remove my gall bladder. Never did that… lol
Just my two cents worth.
Best wishes for your troubles and pain.
Almost comforting that I’m not the only one, but the weird thing is I don’t do caffeine. I’ve had coffee only a handful of times in the last year. But eating fattening foods Can trigger it sometimes… but not always. This disease sucks you never know if it’s the PSC or something else!
The RUQ pain could be indicative of a blockage in your bile ducts, or at least a very bad narrowing of the ducts due to a stricture. ERCP’s are a very needful tool for a PSC patient. If you continue to have RUQ pain and especially if the pain runs around to your right back area, you could very well have an issue within the bile ducts that only an ERCP will rectify. I’m wondering about your hepatologist. Is he at a major hospital that does transplants or is he a local hepatologist at a GI center? He may not have that much experience with this procedure and is hesitant, rightly so to do one on you. --Finally, he may have all the confidence in the world, but I believe you will find relief if there is indeed an issue inside the ducts if you can get a skilled doctor in ERCP’s to go in and do a balloon dilation, etc. Hopefully they can avoid those dreaded stents as well.
Yea I see Ken cox at CPMC and Jayakumar at ucsd and my last mrcp in July / ultrasound two weeks ago didn’t show any dialation in the ducts or blockages and that’s what is so confusing. My pain is usually after I eat.