Pain under right rib, upper right back for 20 months.
Posted , 6 users are following.
Hello all-- Long time lurker. 35 year old male, good physical shape, bike ride/run 30-50 miles per week. Thought it was time to post something to see if there are any suggestions or stories of similar experiences. 20 months ago I developed a sudden pain under my right rib (and upper right back) and severe intolerance to caffeine and fatty foods. I can't even have decaf coffee or it sets me off. I have had 2 CT scans (spaced by a year), endoscope, colonoscopy, 6 liver panels (and pancreas), gallbladder removed (6 months ago), and a MRCP. All came back negative for anything.
My intolerance to fatty food and caffeine got worse after the gallbladder removal, and I haven't been able to get back to eating what I could before that surgery. I am currently trying to eat under 20 grams of fat per day, but this is pretty hard. If I do this my pain is very minimal or pretty much absent. I am thinking at this point I am dealing with sphincter of oddi dysfunction or chronic pancreatitis. I was a social drinker for a number of years (probably 10), and would have a few beers most nights, although I wasn't drinking at the levels I read about that lead to chronic pancreatitis, but I guess for some people it doesn't take much. When this all started I hadn't had a beer in a few weeks actually.
I'm currently at a loss on what to do now. I think my GP and GI docs think I'm crazy, but if I eat a burger I am screwed and fill like crap for at least a week. I have noticed that lemon juice can help ease the pressure/pain. Does anybody have mild chronic pancreatitis in which they only have pain when they screw up on their diet? Pain is usually a couple hours after eating and is around a 4-5 on the pain scale. This usually also leads to a muscle-like stabbing pain on my upper right back beside my shoulder blade. Anybody have pain like this, only on the right side? I don't know if its SOD or chronic pancreatitis but would really value peoples insights. The only other tests I can go for are ERCP and/or EUS. Also-- stress has a huge impact on how bad my "flare-ups" are.
1 like, 26 replies
kluesy
Posted
Do folks with CP get stabbing nerve-like pain in their upper right back, not the left? This is something I deal with on almost a daily basis. It's always on the right side and is almost as high as the shoulder, between the shoulder blade and the spine. I also swear there are times where my actual vertebrae feel sore. I also tend to have pain on an empty stomach (long gap between meals) and eating sometimes helps it (which is weird). Usually after a few hours the pain sets back in. This is all so confusing and it is driving me crazy. I am a scientist by profession and I spend my day research and running tests, etc, and I'm loosing it not being able to figure this out. I'm sure my anxiety is not helping as well. To be honest, the one thing that does knock the pain quickly is CBD oil-- this has been a bit of a life saver for me.
chelsey72022 kluesy
Posted
Yes, I personally havent experienced this, but I am part of a few pancreas support groups on facebook and have seen this mentioned quite a bit.
I to get pain if I dont eat, and like you find it is better and then about an hour after it may hurt again.
Have you been diagnosed with a pancreas issue?
I've found that creon really helps with the digestion and therefore the pain after I eat.
kluesy chelsey72022
Posted
No, I have not been given a diagnosis yet, which is the frustrating part. Everything thing but Chronic Pancreatitis and Sphincter of oddi dysfunction has been ruled out (you can see my long list of tests in the first post). The enzymes do help I believe, especially if I have a larger meal. I guess this points towards CP, but my MRCP was clear. I guess if I have CP it must be mild/early, as no large structural changes have happened yet. I have also started taking grape seed extract and some other antioxidants, as was suggested by the "healthy guy" blog, a guy who has had CP for 30+ years and currently has no pain.
chelsey72022 kluesy
Posted
I'll have to give the grape seed oil a try!
I completely understand your frustratitions, if I hear the word "idiopathic" one more time out of my doctor I might scream lol. I guess in a way we should be thankful that we are those "mild cases," but I wish they could tell me something.
Have they tested your immunoglobin?
I would push for an EUS as I've heard they are very reliable.
kluesy chelsey72022
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I'll have to check if they did immunoglobin. What would this show? I need to push for EUS-- did you have this done and did you show early CP?
chelsey72022 kluesy
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The immunoglobin would show if it is possibly autoimmune pancreatitis, specifically the igg4, if you havent, ask for a hepatic panel to check your tryglecerides as well (do it on a full stomach.)
Like you I am still awaiting a diagnosis, I just had labs drawn and if they cone back ok I will be scheduled for EUS and possibly ERCP.
The only thing that I guess is my saving grace in this is that I've had the two acute attacks that required hospitalization so at least they know there is something going on with the pancreas and cant discredit it.
kluesy chelsey72022
Posted
They did test me for an autoimmune reaction (ANA count or something) and that came back positive, although it never really went anywhere. I also have something called eosinophilia, where that type of white-blood cell is triple what it should be. 0-5% is normal and I have around 15%. That sent us down a road of rare diseases, although nothing showed up (thank god). Doc's said it could be caused by my severe asthma (which I have had my whole life and has put me in the hospital too many times to count). I just checked and I did have IGG done and that came back normal. I haven't had my triglycerides checked yet. My mother passed away last year at the age of 59 from an undiagnosed auto-immune problem, so I hoping on don't have something passed on genetically...
Good luck on the labs. Hopefully you can get a EUS and at least get a diagnosis. The not knowing drive me insane-- if you have a diagnosis at least then you can try and figure how the treat the pain/symptoms, etc You should google the "healthy guy pancreatitis" and check out his blog. I found a lot of useful info there.
HumanBeing kluesy
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kluesy HumanBeing
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I don't have confirmed CP, but I can say during a flare-up lifting anything heavy or heavy exercise causes discomfort. Do you have a bad reaction to fatty foods, like pain soon after eating anything fried/butter, etc? That is usually a tell-tell sign that it could be your pancreas or some sort of bile duct issue like the gallbladder. They though gallbladder for me (because it was under my right rib), and took it out, only to make things worse. I wish I could go back and keep the organ, as my tolerance to foods was waaayyy better before.
HumanBeing kluesy
Posted
kluesy HumanBeing
Posted
Well, I'm going on 20 months now and it is getting worse, not better, so I'm not sure if this will turn around or not. I guess this is how CP goes (if I have that), as it is a progressive disease. Hopefully if the no gallbladder is causing problems that will settle down. The first 2 months after surgery was pretty hell trying to eat anything. I was basically living on rice and jello for a while. Now that has settled and I am dealing with the old/pain attacks I had before, but worse. This is one thing that was making me think SOD, as I heard this gets worse after you remove the gallbladder.
It could be that you have a bad gallbladder, as this is a lot more common than pancreas issues. Have you had an ultrasound and/or a HIDA scan? HIDA scan would show if it is working or not. My was 98% ejection fraction, the highest the doc had ever seen (not suppose to be over 75%). Was told could be hyperactive gallbladder issue-- turns out that was not the pain, although it does seem like something was causing it to be over-active.