Dilated pancreatic duct, elevated alkaline phosphatase, pain under ribcage, loss of appetite

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I've been suffering since May 2019 with pain under the ribcage that doctors mistakenly diagnosed as a gallbladder problem. They removed the gallbladder in June and things became progressively worse afterward. I lost 30 pounds and have been suffering with daily pain under both sides of the ribcage and back since. Have burning in my stomach and esophagus that I didn't have before the gallbladder surgery, and no appetite whatsoever. I've slowly been getting a bit better, thanks to my faith in God and many prayers but still have daily pain and have been unable to work at the office for the last 8 months. The doctors have been in no rush to do anything for me this entire time. After fighting with my GI doctor, I recently had an MRCP, which showed a dilated pancreatic duct in the middle/tail region and a cyst on my kidney. The recommendation on the report was to follow up in one year. Have any of you had a dilated pancreatic duct (indicative of a cyst or blockage) and accompanying symptoms like pain under the ribcage that refers to the back and no appetite? Did your doctor treat this or do additional testing to see what was causing the blockage? I have been fighting with doctors for months now to get any testing at all as none of them seem to care. My next follow up isn't until May. I called a different GI practice and got an appointment in April. Is a dilated duct and elevated ALK with pain and loss of appetite not a real concern? I guess I am stumped as to how the radiologist felt that follow up in one year was appropriate.

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  • Edited

    Hello,

    I don't have a lot of answers for you, but I can try...

    If you are still experiencing that burning sensation, that sounds like it could be gastritis (can be treated with proton pump inhibitors like Omeprazole or Prilosec OTC. Don't take it long-term without asking your physician. You might need a lower esophageal scope to see what is going on. It's also possible the MRCP shows acid in the LES (lower esophageal sphincter).

    If you are nauseated, ask about sublingual Zofran, Reglan, or similar.

    Ask about any supplements you might need. Vitamin D is often deficient and supplements can help with bone pain and possible osteoporosis issues moving forward. In general, pancreatitis patients are deficient in A, D, E, and K, but get blood tests run before starting any supplements

    Are you on digestive enzymes like CREON or ZenPep? They can help you to put weight on and potentially reduce some of the discomfort or pain. Digestive enzymes lighten the load on the pancreas and helps your body digest nutrients better. They can also control diarrhea. You might get tested first for EPI (exocrine pancreatic insufficiency) via fecal elastase test, or your doctor may prescribe them without a test. CREON and ZenPep are both quite expensive, but there should be a coupon available on each of their websites.

    For future testing, ask about another MRCP, but also ask about EUS and ERCP. EUS is another scope like MRCP, and I believe it's slightly more sensitive. An ERCP is more invasive and can help pull out any pancreatic (not gall) stones. It can also trigger an attack.

    Adjust your diet: low fat / high protein, soft foods, not spicy, not raw (vegetables). Avoid alcohol at all costs, as it's a big trigger. I eat chicken, broccoli, rice pretty much every day... If you're having a flare, switch to clear liquids (jello, broth, water) for a few days. Drink Ensure to try to gain some weight.

    Buy yourself a good heating pad. I recommend the Pure Enrichment XXL on Amazon. Invest in Tylenol.

    Start looking into FMLA and Disability. You may need it. Don't alert HR until you are sure it's what you need to do.

    Let us know where you live. There may be a pancreatic surgeon near you. The main list of centers is here, but is slightly out of date:

    https://pancreasfoundation.org/npf-centers-info/pancreatitis-centers/

    See if you can get a pancreatic specialist in the meantime. Regular GIs tend to not know how to handle pancreatitis.

    Hope this helps,

    Veda

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  • Edited

    You might have gotten SOD after the removal of your gallbladder plus the pain that comes from a dilated pancreatic duct. Usually GI doctors aren't really concerned with pancreas related results (in my experience). My MRCP revealed I was born with two pancreatic ducts and my GI said my symptoms were IBS related (I had lost 50 pounds in a matter of months being bedridden). It took me two years before I was diagnosed with chronic pancreatitis (mine was due to the way I was born though). When the pancreas is inflamed it doesn't like food! You can drink broth or Ensure for a couple days then slowly incorporate rice and see if you get pain, if you do go back to broth then repeat until you can eat bland food with minimal pain. Even with a CP diagnosis there's not much they can do other than an ERCP to unblock an obstruction or place a stent. Other than that it boils down to a very low fat/carb lifestyle. There's also digestive enzymes (I would ask for a EPI fecal test), it'll show if your pancreas is digesting fats properly. If you're young, they'll dismiss you but your blood work is showing pancreas related symptoms so that's a good sign (once you're chronic your blood doesn't show it). I don't have my pancreas any more and my ALK levels are elevated … even when I had my pancreas, they were never elevated. I wouldn't stress yourself out, it will literally cause you pain. Eating oranges helped and taking Tylenol for pain.

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    • Posted

      Thank you for your reply. I am 50. The pain worsens as the day progresses. It's there everyday, though, so it doesn't really come and go per se. I did have elevated white blood cells at one point but again, doctors were dismissive. Am thinking if there is an obstruction along with pain and elevated ALK that ERCP might be beneficial to unblock it. Also, I read 11% of people with blockages eventually get pancreatic cancer. I'm doing my best to stay positive. Prayer really helps. I didn't realize you could live without a pancreas. Shows how much I know.

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    • Posted

      Thank you for your reply. I am 50. The pain worsens as the day progresses. It's there everyday, though, so it doesn't really come and go per se. I did have elevated white blood cells at one point but again, doctors were dismissive. Am thinking if there is an obstruction along with pain and elevated ALK that ERCP might be beneficial to unblock it. Also, I read 11% of people with blockages eventually get pancreatic cancer. I'm doing my best to stay positive. Prayer really helps. I didn't realize you could live without a pancreas. Shows how much I know.

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    • Edited

      I have also never heard that about the ducts and cancer but my pancreas specialist ran a certain blood test to rule out a gene mutation for cancer. You can ask for that blood test. As the other comment stated PC doesn't have symptoms like pancreatitis and as chronic pancreatitis continues the doctors will tell you the symptoms lessen (I don't agree) because the pancreas stops working. As far as living without a pancreas it's possible nowadays but you become diabetic and you're dependent upon digestive enzymes. It's a major major surgery.

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    • Posted

      Gosh, I'm so sorry you had to have your pancreas removed. I need to get my bloodwork done again. It's been a while and each time the ALK kept going up. Last time my ALT was also high.

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    • Posted

      Those are liver enzymes which will stay elevated if another organ is inflamed (everything goes through the liver). I had my islets transplanted into my liver (this prevents me from needing insulin all the time) but it also makes my liver work harder which is why my ALK enzymes are still elevated from having my pancreas removed last October. The body can take a long time to heal even if you feel better/worse. I wouldn't stress too much but I know that's easier said than done. Just remind yourself the pancreas is the hardest organ to diagnose due to its location.

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    I have never heard that specific statistic about clogged ducts and cancer. I have heard that dilated ducts can signify cancer, though. I wouldn't worry too much about it right now. Just managing pancreatitis without cancer is a full-time job.

    (My understanding is that people who have pancreatic cancer don't suffer from chronic pain the way chronic pancreatitis patients do. It supposedly presents as "general malaise and feelings of being unwell". That's what I have been told by 3 PC individuals. If you're really worried, you can always look into Low Dose Naltrexone combined with Metformin as promising treatment. I've heard good things, but do not have details.)

    I would say, yes, an ERCP is not a bad idea. If you can get your insurance to cover it and a doctor to order it, go for it. The possibility of developing necrosis, sepsis, and even death is higher with people who suffer from duct problems. Just know that you'll probably have an attack afterwards.

    Also, you should never try to ride out a bad attack at home. Clogged ducts are no joke.

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    • Posted

      Thanks for replying. I am not sure I've ever had an actual attack. It's a constant ache under the ribs (on both sides but a bit more on the right side) so it is there all the time. It gets worse at night and hurts more when I lay down. In the morning it hurts the least. I had an endoscopy about a month ago and it didn't show gastritis even though I'd had burning pain for months. I do get burning up the esophagus and into my sinuses but I think it may be bile reflux from the gallbladder surgery. I take omeprazole but it doesn't seem to help at all. I haven't been diagnosed with anything at this point so I can't say for certain it's pancreatitis but it sure sounds like it. However, I don't have diarrhea. I do take digestive enzymes and have to force myself to eat as I am rarely hungry. My weight has stabilized but I am making a lot of effort to eat more. If I reduce food I keep losing. I do feel like digestion is very slow but that can also be from the gallbladder being gone. I guess more than anything I am just puzzled that a person can be suffering this much and doctors be so dismissive. It seems they would further investigate a dilated pancreatic duct to find out what is blocking it. I feel like I'm always fighting with them to do anything for me. Sigh. I live in NM, USA. The healthcare here is pretty awful compared to other states.

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  • Edited

    HI I have pain both side of ribs normal get your doctor to get in touch with the pain clinic. Also if you think it's long winded I called the NHS COMPLAINTS DPT they will make calls to find out what is going on. but having said that they are slow I rang them every other it's there job hope this helps

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    • Edited

      Thanks so much for the advice. I may wind up having to do that. I'm going to call next week to see if I can get my appointment moved up. I did file a complaint against my last doctor but nothing really happened. I had to switch to another doctor on my own.

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  • Edited

    While you are getting cancer markers checked, ask also about genetic tests.

    "Certain substances, such as carcinoembryonic antigen (CEA) and CA 19-9, are elevated in people with pancreatic cancer. However, blood tests don't allow for early detection of pancreatic cancer, because these levels may not rise until pancreatic cancer is advanced, if at all. These tests also may produce a false positive result."

    I think the genetic markers are SPINK, PRSS1, and CFTR, but don't quote me.

    And definitely see about getting a pancreatic specialist, even if you aren't sure. It sounds very likely. Ask first about that acid reflux -- nip that in the bud, if you can. You don't need more damage.

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