I’m new to this forum. I joined because I have a continuing problem with what one of my doctors calls Right Upper Quadrant Pain (RUQ Pain).
I was diagnosed with PSC in Sept '12, had the ERCP and stents, infections, 12 hospital visits in one year, etc. etc.
Then in June '13 I was diagnosed with severe Crohn’s. More visits, more doctors, etc.
My liver numbers have flucuated and are still high, but my MELD score is low.
Crohn’s was “downgraded” to moderate a few months back.
My problem is that I continue to have abdominal pain all over, with the majority of the issues at two distinct spots: one spot about 2-1/2 inches to the right of my bellybutton, and the other just up under my right ribcage (about where my bile ducts should be). My doctors tell me I “shouldn’t be having this pain…” but I do. Recently had an MRCP which showed that though “the PSC is progressing,” all is well (no cancer, no stones, etc.).
I’m the dude that doesn’t have any novacane when I have a cavity filled, so pain isn’t usually a problem… but this abdominal pain is driving me crazy!
Is this continuous pain to be expected?
You do have yourself a problem it sounds. I’m sorry for the pain. I’ve been sitting here thinking that if you had a recent ERCP that would certainly explain the pain, but that doesn’t seem to be the case. It really sounds to me like you may need another ERCP, especially if you haven’t had one since 2012. Question. Give me your most recent CMP lab results. This would be your liver panel.
Sodium, Creatinine, AST, ALT, Bilirubin Total, Alkaline Phosphotase and your INR (also called Prothrombin Time).
Hoping you can get some relief soon.
PSC 2011 / Liver Transplant 7-2015
I appreciate your response.
Would an ERCP be appropriate if the recent MRCP indicated further scarring of my bile ducts, but no obstructions?
My liver numbers are actually the best they’ve ever been (since diagnosis)…
AST 44 (down from 170), ALT 54 (df 235), AlkPhos 136 (df 344), Bilirubin 0.3 (df 1.5), INR 11.7 (df 16.8), sodium has been low but is now back in normal range at 139, and creatinine has always been 1.0.
Unfortunately, the pain continues.
I ran your numbers against the MELD score calculator. Are you sure about your INR being 11.7? That is mighty high! You may have meant 1.7. The .3 bilirubin was below normal so I used the 1.5 assuming that was the bili total. Taking that into account I came up with a MELD of 12 with an INR of 1.7 but if that 11.7 is correct your MELD would be 34 which means you’d be ready for a transplant. From what you are stating though I doubt that INR is that high. Of course I’m not looking at your labs so you need to confirm. Run your own score using this calculator. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Regarding ERCP, I pretty much knew I needed one when my bilirubin went way up in the 4.5-5.5 or more range. And yes, I would have some pretty strong RUQ pain, lower back pain, etc. Your bilirubin is low so considering that I would say you probably don’t need one. Of course your hepatologist is the one to answer that question for sure. We are all so different so it’s difficult to say for sure. If you are having pain though there’s got to be a reason so an ERCP wouldn’t hurt if they can justify doing it. Sorry I don’t have a more definitive answer for you. Keep in touch and let me know what you find out if you will.
Oh, sorry, I got confused on INR vs. Prothrombin Time. You’d said they were the same, but I see now the INR is different. INR is now 1.1 (down from 1.3). The Prothrombin time was indeed 11.7 (down from 16.8). The bilirubin was last at 0.3, down from 1.5. Bilirubin direct is <0.2 down from 0.4, but I think the number we want is the first one, based on the description on my hospital’s website (it says bilirubin total there).
I tried the MELD calculator… looks like I range from 7 to 11, although it won’t take my 0.3 bilirubin. This MELD is consistent with what my hepatologist has told me (“less than 15”).
However, he also told me he doesn’t know why I’m feeling the pain… That’s what’s frustrating.
I hope you find this well. First off, your at a good site in regards finding logical answers. There are particularly a few people on this site that are very knowledgeable. You mentioned that you were diagnosed with crohns. Is it possible that you are having a flare? I’m currently in a hospital fighting an infection…going on 5 days. Fever and chills, urq pain, but also pain in the area you mention in your lower right abdomin. If you have crohns, I wonder if the pain your feeling is in the cecum area? That’s a classic spot where you would feel pain. Thsee episodes can last an awful long time. I’ve always been diagnosed with ibd. My gastrointestinal doctor is thinking I may have crohns of the mouth due to where I have the lower abdominal pain and the infection I have in my mouth (not pleasant ). I’m still waiting on my own results while I lay here typing. Tomorrow I have a colonoscopy then hopefully Friday I get some results and answers. I don’t know if helps in any way but if you have crohns then it can very well be a flare. I’ve been lucky and have only had 2 flares in asany years…but things can change. Diet is key. Maintain a healthy diet and exercise a ton.
Sorry about your infection. I pray you’re better now.
The last time I saw my gastroenterologist, she said my Crohn’s was “under control” and now “moderate” rather than severe. She couldn’t tell me why I was feeling so much pain ("…it can’t be because of your Crohn’s…"). She then sent me off to a gastroenterologist who specializes in pain management. The pain management guy prescribed more drugs and sent me to a psychologist. The drugs help some, the psychologist didn’t really help at all.
Maybe the pain is due to a “flare.” However, I don’t know that I’ve ever had a “flare” because it always hurts. Doesn’t “flare” imply that it has gotten worse… in other words, at some point it hurt less (or not at all)?
Just as an update. I continue to have constant RUQ and abdominal pain, even though my Crohn’s is now “in remission.” A trip to Mayo in Rochester, MN provided a diagnosis of fibromyalgia. Basically what they’re saying is there has been so much going on in my abdomen that the nerves can’t shut off. Plus, I have all the classic signs of fibro. They also added in a couple of neurologic disorders. All of this may or may not have anything to do with PSC, but it sure makes it a pain to live with. In the mean time, my liver has started acting up again, with my numbers tripling to the highest they’ve been since 2013… concurrent with more sharp pain up under my right ribcage. Sounds like PSC rearing it’s ugly head. Ouch.
I’m sorry to hear things have been going a bit downhill for you recently. I hope you can get some relief for your PSC soon. What do your latest liver numbers reveal about your MELD score?
Haven’t had my MELD calculated in quite awhile. Haven’t had a blood test with serum creatinine, serum sodium, and INR for a long time either. Maybe after my Friday ultrasound I’ll know more…
Thanks for asking.