Last night my fiancé woke me when I heard him grunting and trying to hold his breathing steady to keep from crying. The poor thing was in such pain. He described to me the pain as an extremely painful sharp pain in the upper right abdomen area. I offered tea, water, a hot compress… He said none of the remedies I use for my… Womanly monthly pains would help. After about 20 minutes trying to tough it out he took a hydrocod pill that his Gastro doc had prescribed in the past. Had that pill not calmed the issue, we would have gone to the ER. However with the pain pill he was able to relax and fall asleep. This morning he woke without pain.
What can I do to comfort him next time?
Is taking a pain pill, masking a problem that should not be ignored? He felt as if it were a stone of bile passing. His eyes were clear that day, I check them daily.
What are your experiences with this sort of pain? He’s had pain like this before, it passes, within a week or two he’d have an ERCP to clear what was passing. We have an appt with his liver doc next week, we will discuss this episode with him. BUT… I didn’t have you guys the last time he had these pains… So, what do you guys do/think?
Well Gloria, when i often get these pains (including as i type) i typically don't do anything :/ as unbearable as it is, unfortunately, i don't know of many things that can help, could you ask him if burning pains also come with the sharp pains? ive lately been experiencing these same sharp pains along with this new Fire feature that i am not fond of. oh! & the itching all 3 at once could drive you absolutely insane especially since you cant reach it. if any advice i could give at all would be laying on the opposite side of the liver. pressure on it seems to set it a blaze, hope to hear from you soon.
Just had a bad experience with Cholangitis pain after an ERCP procedure to remove a stent. Had to be admitted as in inpatient, given Morphine and IV Antibiotics for 4 days…very unpleasant. My advice would be to call the emergency services and get to hospital ASAP for treatment…don’t hesitate and try to deal with pain yourself…just my experience…best regards.
This is how my experience with PSC began and after a night-long unrelieved session of 10+ level pain, I went to the ER. By the next day, back in the ER, the fever and chills started and I was admitted and treated with heavy-duty antibiotics. (The PSC had not been diagnosed at that time.) Now any episodes with cholangitis for me (and many others) begin with chills then high fever, with or without pain, and I get to the hospital as soon as I can. Cholangitis can quickly move to sepsis which is life-threatening. I never take anything for the fever or the pain because I could very well be masking what is a serious problem.
It would be a good idea to discuss this situation at length with his hepatologist and come up with a plan of action. Checking his eyes may not tell you anything at the time. It could take awhile for the bilirubin level to rise enough to show jaundice. Any serious pain is worth having checked out. Taking an old medication prescribed for something is not a good idea - until you pass this by the hep.
Good Morning (different morning) Sorry to hear about the pain, haven't had that issue so we will be anxious to hear what the doctor thinks.....please let us know.
Good Morning (different morning) Sorry to hear about the pain, haven't had that issue so we will be anxious to hear what the doctor thinks.....please let us know.
Randy: I’ll ask my fiancé about the burning along side the pain. He did in fact tell me he was itchy last night. This is new for him to itch enough to complain. I will see he lays opposite of his liver. Thank you!
QueenB: My fiancé had a very similar episode. After an ERCP there was a little jerk that decided to pass once a stent was in. The stones of gunk were very painful, so much so that a pain pill did not soothe him. He went to the ER that night. Admitted and given morphine, antibiotics, and was held for 4 days as well. He was very, very yellow. (Jaundice makes him sooo uncomfortable. He feels like the Elephant Man.) I want him to go to the ER when these pains come on. He thinks he knows the routine now. Pain, meds., relax, gunk passes… The end. He wants to tough it put of po$$ible. The cost of an ER visit is astronomical!
Thank you for your advice and sharing your experience!
Danabee: When my fiancé has fever with chills he takes an antibiotic pill. The bug will go away within a day or so. His gastro doc tells us it’s a little bug passing. I thought his eyes were indicators of his liver functioning well and keeping clean. I need to do more research on this area. The hydrocod pills were prescribed and are current as this is not the first flash of pains. God is good; when these episodes come on we coincidentally have an appt booked right around the corner. I will definitely be pushing to go to the ER should he have pain today and bringing the discussion of sepsis to the table at our next appointment. Thank you!!
Danabee: thank you for bringing sepsis to the table! Just reading up on it for 5 minutes I feel like this is an area we need to explore!! My fiancé has low palette counts, low blood pressure, and something funky going on with with blood that his Hemo doc. couldn’t identify. We went to a Hemo doc. as his general doc saw something weird with his blood. After a slew of hemo tests, the doc said that there was in fact something wrong as his counts were low, however, he saw nothing he could do outside of palette infusions. Nothing about sepsis was mentioned… Ugh! Thank you Danabee!!
This is why I love this site. Just spitballing experiences and conversations can open many doors that directly effect and can potentially change our lives.
Gloria, I'm glad I could help. Cholangitis is a very common event for people with PSC - unfortunately. Not everyone has it often, but I went through a period of about 2 years when it was coming up frequently. I learned a lot about it. It doesn't always come on with pain, but almost always with fever. But the very first time I had it, the pain was intense but the fever didn't show up for 2 days. By the way, I also have a very low platelet count (you wrote "palette" but it's platelet) and low blood pressure now. This is pretty common in advanced cases of PSC when the cirrhosis shows up. I really suggest that you go to a hepatologist who is very familiar with PSC, and not just a GI doc. You need a GI for ERCPs but they should be recommended by the hepatologist. PSC is a rare disease, no matter how you cut it. I can only go to ONE hospital ER when I get sick - the one with the Transplant Center who always has a hepatology fellow on call and the one where my hepatologist practices. The rest of the hospitals and the ER docs don't have a clue about PSC. Occasionally you might find an ER doc who knows a little about it - but it's frustrating to go there, spend all that money (as you pointed out!), and no one really knows what to do with you.
You're really smart to come to this group for information and to keep pursuing the right treatment for your fiance. He is very lucky to have you, Gloria! Good luck, and don't give up pursuing the right treatment and care. It's out there! -Dana
Sdrian Mak: That's what I am thinking too. I got back some blood work today, his bilirubin is at 7.3 which is high for him. It has never been this high. I am some what hesitant on showing him tonight because I know how upset he will be. He's feeling well and has gained a few pounds... maybe I'll show him Sunday so he can easily dismiss it once the Super Bowl comes on. Lol. That's how I sneak bad news by, just doing it during sports.
We have an appointment on the 6th to see a new gastro doc at CPMC in SF. I'll keep you all updated on what comes of it. Thank you for your post.
Danabee: "You're really smart to come to this group for information and to keep pursuing the right treatment for your fiance. He is very lucky to have you, Gloria! Good luck, and don't give up pursuing the right treatment and care. It's out there! -Dana"
Thank you! The encouragement and advice is priceless. Knowing there are people out there that understand our world is very comforting and reassuring that we are not alone fighting our battle. XxXx.