Still not diagnosed

[nanagizer]

Hi all,

I am writing in the hopes that someone out there can help me. I have had terrible abdominal pains and/or diarrhea, nausea, weight loss for the past couple of years, getting worse all the time. I seem to have to run to the bathroom almost every time I eat. I also urinate a ton, though my blood sugar is fairly normal. I have been to a couple of gastroenterologists for help and the last one I have/am seeing is a super specialist in the pancreas at Cedars Sinai in Los Angeles. He was actually recommended by Megan Golden at MC last year. I reached out to them after researching pancreas stuff online.

Dr. Pandol and staff (Cedars Sinai) have performed an MRCP with secretin, stool study, Endoscopy, Upper GI series and most recently and EUS and colonoscopy. All tests have come back normal. I had an acute episode late last month and went to the hospital and all they found were highly elevated liver enzymes and CRP. Tested lipase and it was normal. Did CT scan and found inflammation in my colon and treated me with antibiotics. That ER visit was what prompted Dr. Pandol to do EUS and colonoscopy which both came back normal minus a polyp here and there which also came back normal after biopsy.

I know I am seeing the right person for this, however I would like to know if anyone else out there has had ALL these tests done and still had CP? I just feel like I do from all the symptoms I am experiencing. My life is completely revolved around this discomfort and I am now not sleeping and am afraid to eat.....quality of life is getting worse and worse by the day.

Thanks for any input you might have,

Nanagizer🙏

[b1b1b1]

This is such a difficult situation to be in. Have you asked specific questions for the gastro? For example, does he think you have pancreas disease, or do you have elevated liver enzymes. You need to follow up on the liver enzymes to make sure they come down. I had elevated liver enzymes some time ago after a bout of mono. I had to get the liver panel done every 2 weeks and my gastro was very relieved when they did start to come down. I think you should watch them very carefully as that is clearly the one major thing that came back abnormal. Also keep an eye on the CRP. Those are the two abnormal things and you want to be on top of them and making sure they come down, and why not if they don't come down. You can also think about a second opinion.

[Signingfun]

Keep asking questions. Unfortunately, it takes time to get a diagnosis. The tests for chronic pancreatitis do not always show damage. Take care, Anne

[nanagizer in reply to Signingfun]

Thanks for your reply. I do have another appt with my doc on Thursday. If the tests I have had all show negative, what do I ask him for now?? How does this disease get diagnosed properly??

[Signingfun in reply to nanagizer]

Keep a journal with your symptoms. That can help towards a diagnosis. The more details you include the better.

[Eric_MC]

I am also treated at Cedars Sinai. I was diagnosed via EUS which found extensive scarring plus elevated lipase levels during attacks. Personally I haven't heard of someone being diagnosed with CP without one of the tests you mentioned coming back positive, so they may need to test for other conditions.

[nanagizer in reply to Eric_MC]

Thank you for the reply. I agree. This is most likely something else but they just don’t know what. Do you see see Dr Pandol or Dr Gaddam? I am working with both of them. Put me on nortriptaline to see if that helps with my pain. Been 2 weeks and still feel miserable. 😢

[Briana1]

I’m so sorry they can’t figure it out! It’s so frustrating! Have the drs tried to prescribe a script of enzymes like creon or zenpep to see if you feel a little better. You can get a second or third opinion or even a fifth. You do sound like you have chronic pancreatitis. Ask them if you can get a script of creon or zenpep and do a trial for a month to see if you feel better. I would recommend to see someone else even best of drs can make mistakes. I almost died because of a medical mystery case I was and they missed my diagnosis and I had to see 5 drs before they figured it out and I needed emergency surgery. Keep trying and see someone else if you need. I’m so sorry! Good luck! Ask the national pancreas foundation who they recommend or call the hospital and ask for a second opinion or third from a different dr. I was diagnosed after having my gallbladder taken out after having chronic gallbladder disease and chronic gallstones and needing a Ercp after my liver enzymes were so high and had a gallstone stuck in my chest a pretty big one. I have atrophy of the pancreas on mrcp and dr put me on a trial of enzymes and I felt a little better but still in a ton of pain but glad for diagnosis after 4 years. I also had 9 prior open abdominal surgeries on my colon. Wishing you luck they figure it out and you feel better!

[nanagizer in reply to Briana1]

Thanks for the reply Briana1. I am curious what tests they ran on your prior to your diagnosis