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Pain under right rib, upper right back for 20 months.

Posted , 6 users are following.

kluesy
kluesy

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

26 Replies

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  • chelsey72022
    chelsey72022 kluesy

    Posted

    We are so alike lol

    Except my pain is predominantly on my left and I've had two acute attacks that put me in the hospital.

    Like you nothing is showing up for my doctors either which Is sooooo frustrating not to mention scary (dont google) from what i know per my facebook support group, mild cp is much harder to diagnose because we are not at the point that we have seriously damaged our pancreas. I would talk to your dr about maybe trying creon or see about buying one off line to see if it helps. I would also stick to your diet I know the days I mess up it hurts. I'm sorry you're joining us if you have any questions (even the poopys ones, pun intended) I'd be happy to answer them.

    • kluesy
      kluesy chelsey72022

      Posted

      Thanks Chelsey. I have ended up in the ER once, although they did an ultrasound and bloods and said it looks good and discharged me. I have tried using the pancreatin pills for the past few months and it at least seems to help with my digestion. I don't know if it helps with the pain at all though. Have you had a ERCP or EUS? I have read that EUS is the most sensitive at detecting early CP. How long have you been dealing with this? 

    • chelsey72022
      chelsey72022 kluesy

      Posted

      Nooo I've just had tons of blood work, Ultrasounds, and cts. I think they look at me and think I'm to young and healthy to have this so they (meaning the doctors) dont pursue any other sort of testing. I'm suppose to be seeing a really good gi doctor tomorrow morning and am hoping she is willing to order something a little more invasive so we can get to the bottom of this. I just want my life back.. I had my first actual acute attack in 2016 but have had the pain since 2012. My most recent attack was in June and I've been dealing with daily issues since then.

      Like you I was never a heavy drinker nor do I smoke so they're having a hard time lol.

      It makes it worse when doctors just want to label you as being crazy..

      Could you maybe go for a second opinion with a different gi? I know the national pancreas foundation can point you to doctors in your area that specialize in the pan.

    • kluesy
      kluesy chelsey72022

      Posted

      I may try a different GI. He seems to think I am just going to have to deal with it, and it doesn't like the idea of EUS as my bloods have always been good (which is common in CP). Even if I get a diagnosis of CP, it really will not change anything. I would still eat low fat and avoid the triggers. I just wish I still had my gallbladder, as I was at least 50% better before my surgery. Like you, never a smoker, so maybe I won the genetic lottery on this one smile 

      However, if it is sphincter of oddi dysfunction I may be able to get the sphincter cut and get relief. The chronic pain and stress/anxiety it brings is enough to drive you truly insane. 

    • Flibety
      Flibety chelsey72022

      Posted

      Have they done the genetic testing. I never drank either. They did the testing and i was positive for the cf gene. Ive had chronic Pacreatitis for about 15 years now and it took them a long time to diagnose me because i didnt fit their criteria.
    • kluesy
      kluesy Flibety

      Posted

      No genetic testing for me yet. Have you had any complications having CP for 15 years now? Do they think SOD caused the CP? Also, how were you diagnosed? 
  • Salman.quadri
    Salman.quadri kluesy

    Posted

    I think it's just cause of the gallbladder removal, ur ability to absorb fat has just decreased as ur bile is not stored in the gallbladder anymore, u are supposed to have less fatty foods after you remove ur gallbladder anyways. They are supposed to give u a diet chart specifically for that.

    Could be the biliary tract, maybe bile is getting blocked there.

    For tests you can just simply check your Amylase and Lipase to exclude SOD or CP, but something should have showed up in the CT and MRCP atleast in those cases.

    Most likely it's cause of the gallbladder being removed, keep maintaining ur diet and the pain should subside.

    ERCP would be ur last resort as u would get a complete picture with that, pancreas, any blocked ducts, SOD, etc. But I suggest, the less poking around in there, the better.

    Hope you feel better soon smile

    P.S. Please discuss these things I have mentioned with your doctor first before you make any decisions.

    • kluesy
      kluesy Salman.quadri

      Posted

      Thanks for the reply. I really had problems right after gallbladder surgery because of lack of bile (pale stool, etc), although this has settled down now. I still have the same old pain I had before the surgery, although my tolerance has gotten worse. Amylase and Lipase, along with ALT/AST has always been perfect over the past 20 months (tested 6 times). I have read about folks who could eat a burger one week after gallbladder surgery, so I think something else must be going on. This is one reason (combined with the right-sided pain vs middle or left-sided) that I was thinking some sort of functional disorder, such as sphincter of oddi dysfunction. I don't think it's due to the surgery as it was there for an entire year before. I had read that folks with SOD get worse after gallbladder removal, as the gallbladder acts as a reservoir that can help relieve (it can expand) the pressure (pain) from the biliary tract.  

  • Flibety
    Flibety kluesy

    Posted

    hey. I have sphincter of oddi dysfunction. Has turned into chronic pancreatitis. I had my gall bladder removed and that is when all this started. I had a acute pancreatitis then just got worse from there. I finally after 15 years got a pain pump. It is a miracle.
    • kluesy
      kluesy Flibety

      Posted

      I'm glad you finally got some pain relief. Are you SOD type 1, 2 or 3? Did you have the sphincter cut? What caused you to remove the gallbladder in the first place? With me, I had an ejection fraction of 98% on my HIDA scan and they said it was over-active and it has to go. Turns out that was the wrong decision sad

    • Flibety
      Flibety kluesy

      Posted

      I dont know what type i have. I dont remember anyone ever saying. I had a none functioning gall bladder. They did go in and put 3 different stints in before they cut open the duct. That worked for about 2 years i felt great then i started having attacks agian. They finally decided there was nothing else they could do. I do take the enzymes. It helps with digestion but not with pain. My pain is mostly on my left under breast and threw to my back. I would let them do the ercp.
  • Gillian_68
    Gillian_68 kluesy

    Posted

    Hi 

    I had some of your symptoms, all of them disappeared when I took olive oil daily for 2 weeks. I had upper right quadrant pain, upper left quadrant pain, pain in lower, middle and upper back between shoulder blades. I struggled with fatty meals. I don’t have any of this now. Read up on olive oil, it’s great for pancreatitis, gall bladder issues, liver etc. I pored it over my vegetables for 2 weeks, unfortunately I couldn’t stick to this healthy diet, I’m back on junk foods again, I seem to be fine, but I’m trying to get back on to healthy eating ASAP. 

    • kluesy
      kluesy Gillian_68

      Posted

      Hello Gillian, 

      Thank you for the suggestion, but anytime I have had olive oil it causes pain. As fat causes me pain, I don't see how this will help my situation... Did you have any actual diagnosis for your pain before trying the olive oil? How long did you have your symptoms? Everything I have read about chronic pancreatitis says to stay away from oils. 

    • Gillian_68
      Gillian_68 kluesy

      Posted

      Hi

      I’ve been waiting for ages to see a gastroenterologist, the pain was getting unbearable. This is why I decided to try a Mediterranean style diet. Apart from all the pain disappearing, my diastolic blood pressure dropped from 97 to 77, that’s a fair drop. It may be that you tried a cheap brand of olive oil, avoid all olive oil from supermarkets as these have cheap nasty oils added to them. The olive oil has to be organic cold pressed extra virgin olive oil and unfiltered. Look up olive oil for pancreatitis on the net. I have chronic Gastritis, that’s all that’s been diagnosed, I’ve had heartburn daily for 20 years, indigestion daily and occasionally acid reflux. The pain in right and left quadrant I had for a few months, and the pain in shoulder blades. Only thing to take it away was the olive oil. I bought a good quality one, with a fruity flavour. The olive oil I used is called Centonze, its made in Italy. You can by it on amazon. When I took this, I ate well for the two weeks, ate mostly veg, quinoa rice, herbs etc. Would be great if it could work for you, I wish you the best of luck if you give it a go. Olive oil is healthy fat, so this may be ok for you, even though you sound like your situation is quite serious. Good luck 👍😁

  • Flibety
    Flibety kluesy

    Posted

    A good low fat diet is a good idea and if your body was used to high fat foods and alot of fried food then switching o all veg and olive oil probably did make you feel better. But for someone who already eats well i dont think just eating olive oil is the answer.
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