CP or PC?

Edited , 9 users are following.

I have been having symptoms of CP for year since Jan 2019. Upper left abdominal pain under the bottom rib bone and side of the rib after eating, belching a lot, pain is at level 1-2 no more then 3, and left upper and mid back pain. the back pain only when I sit down or stand very straight or bend backwards. I don't feel the pain after I fall asleep, no pain when I need to go bathroom middle of the night. Stopped drinking since Sept, I wasn't a big drinker only 1-2 wine or beer during the weekend. Floating stool sometime yellow but mostly brown and well formed. I don't have much pain in the front now, all in my back and shoulder blade. Nausea and bloat after eating.

June 2019 colonoscopy clear

Aug 2019 Blood test and breath test for H.pylori clear

Sept 2019 Ultra sound clear

Dec 2019 Abdominal CT Scan clear

Feb 2019 thoracic and lumbar spine mri clear

Terrified I might have PC, because i don't have disable pain like Pancreatitis but feeling sick and unwell all the time. Alcohol never make my pain goes worst.

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  • Posted

    I'm thinking its not pancreatitis. Pancreatitis would be upper right abdominal pain. Have you checked with a urologist? With the back pain I wonder if its not kidney issues. Chronic pancreatitis is easily identified with a CT scan. I would worry more about your kidneys or a possible pinched nerve. i sure hope you feel better soon! keep us updated!

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    • Posted

      Hi... I'm wondering did you get your Amylase and Lipase levels checked? I have CP for the last 4 years and have a pseudocyst about 4x4cm on my Pancreas presently. I believe you need further testing but I would stay clear of any alcohol as that will inflame areas around the Pancreas and only serve for more pain and suffering. Of course there could be other things at play here but take step by step methods to rule out certain things. Your pain is on your left side and tends to radiate around your back. When inflamed it is excruciating pain and the only thing to help ease it (besides opioids) is sitting straight up ant gently leaning forward. Please check in with your doctor sir or gastroenterologist and find out what's going on. I wish you well. Dermot

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    • Posted

      I did have Amylase and Lipase checked last year all within normal range. Stopped drinking last Oct but had 1 beer Christmas Eve and New Year Eve, didn't make me have more pain. And I have no weight loss. Just have pain and feeling sick everyday.

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  • Edited

    I am afraid that Annie1980 is mistaken. Pancreatic pain is most often felt in the left ribcage area, like you described. It is occasionally on the right. This may be due to the location of the damage.

    Everything that you said indicates pancreatitis, not kidney issues, etc. So, you are on the right track.

    It is true that general malaise and a feeling of being unwell is usually associated with pancreatic cancer OR autoimmune pancreatitis. Those two are often mistaken for each other.

    My suggestion would be to get the following tests:

    CA 19-9 (cancer)

    A PET scan to determine spread ( cancer)

    IgG4 (to check for autoimmune -- sometimes results are wrong)

    EVERY test listed in this article (below) that your doctor will agree to. I don't know which are best, but typically EUS and MRCP are used for monitoring CP.

    https://emedicine.medscape.com/article/280605-overview#a1

    You can read about AIP (autoimmune pancreatitis) here and see if you can rule it out:

    https://academic.oup.com/gastro/article/1/1/27/575577

    Testing for pancreatic cancer is usually very difficult until it's too late. Do your best to get these tests now. PC moves very quickly, but people do survive it. You are right to be concerned.

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    • Edited

      18 hospital stays, 2 endoscopic ultrasounds at MUSC and MCG, 10 CT scans, 4 ultrasounds, Cholecystectomy, Creon with every meal for 3 years... nope, I'm not "mistaken". I've battled idiopathic chronic pancreatitis for 3 years and my pain is always upper and slightly to the right with radiating pain to the right side of my back. i promise I have quite a bit of experience in the CP department... also increased lipase levels are only indicative in cases of acute Pancreatitis, not chronic. I been on this forum for a while and am only trying to help.

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    • Edited

      I'm not trying to ruffle feathers, Annie, and I definitely don't mean to invalidate your experience or knowledge. My apologies.

      What I'm saying is that nearly every piece of literature on pancreatitis mentions pain on the left upper quadrant. Some people DO experience it on the right side, however, and I think the literature should be updated to include both.

      The literature is poor in so many ways, and unfortunately results in delayed diagnosis, or misdiagnosis.

      You are absolutely correct that amylase and lipase are only helpful for diagnosing acute pancreatitis. It's unreliable, as you probably know, because the levels cease to rise after damage continues. Unfortunately, this inability to rise ends in patients being turned away from ER / A&E departments, often in great pain. This is another thing I wish was better documented.

      I had one other link I meant to post, which may be helpful to folks here. It's a more "patient-friendly" read. It's better than many I have found, but could still use some improvement.

      https://www.physio-pedia.com/Pancreatitis

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  • Edited

    i dont think you have pc . as you said you having symtom since jan 2019, by now pc would have spread to liver and easily detected by blood test .

    i am thinking could be early chronic pancreatitis .

    ask for fecal fat test and if possible get EUS . mean while go to alkaline and low fat diet . break meal into small portion . it may revert back your pancreas to normal . don't loose your hope fight . i am going through same issue .

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    • Posted

      I read all your post and you had all the test that known to man but still have no diagnosis. At least my ct scan is clear in Dec and no weight loss, but the pain and floating stool worry me, when you see a 5 inch stool floating on top of water. how you stool color? Mine is light to medium brown, well formed but floats.

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    • Posted

      it was light brown/yellowissh .. Now i am on creon . Its better now . Creon was my decision my doctor still saying no to cp . Or they may know that i have cp but they dont have any proof to put on paper . I am treating myself as if i have CP hoping , It may goes away after an year .

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    • Posted

      Yes, you can gain weight when you take CREON, but you have to really work to get there.

      I ate like a machine to put weight on, even eating 1/4 to 1/2 pound of Snickers bars to put weight on. (Not good for diabetics). My evening snack is oatmeal with granola and fruit, and handfuls of nuts and berries.

      You might have luck with Ensure or Ensure Protein. There are also shake supplements like Huel that might help.

      I also started walking more, and it has helped keep the muscle and fat in the right places. if you are super underweight, though, don't push it. Light exercises around the house might be what you need.

      I have finally been able to get off of CREON, but I needed distal pancreatectomy to get to that point.

      Good luck!

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  • Posted

    i have had the same symptoms for 2 years and generally the same test... all that .was found is gastritis.

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    • Edited

      Eugene makes a good point about the length of time and misdiagnosis.

      I read this today:

      "Unfortunately, patients often are symptomatic for years before the diagnosis is established; the average time from the onset of symptoms until a diagnosis of chronic pancreatitis is 62 months. The delay in diagnosis is even longer in people without alcoholism, in whom the average time is 81 months from the onset of symptoms to diagnosis."

      https://emedicine.medscape.com/article/181554-clinical#b1

      I was sick for 10 years and had numerous tests, but no diagnosis. My doctor thought it was GERD and anorexia. I was finally diagnosed in the ER during an acute attack. By the time I was diagnosed, I had lost so much weight that I had bedsores on my butt from my desk chair.

      In retrospect, I should have gone to a pancreatic specialist, instead of to my primary.

      Don't give up trying to get answers.

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