Could this be chronic pancreatitis?

Posted by tinatoren @tinatoren, Mar 10, 2023

Hi I've been dealing with NERD pain, hiatal hernia, IBS for 20 years and have had yellow stools since 2014 when a scan showed my gallbladder functions at 40 percent. I have gone through cycles of ever increasing flares of burning - eating Prilosec-getting better - more Prilosec etc. But Ive always also had pain just above my bellybutton in a band. Also a dull backache in a belt in my back around waist level and sometimes between shoulder blades.
The pain is sharper in front and more dull in back. I used to think it was my back hurting but then I discovered that when I pressed hard above the belly button the back pain would dissappear until I let go. I could never stand with food in my stomach during flare ups. If I sat or layed down with heatingpad the back pain would go away. The stomach pain used to get better 40 min after eating and then come back 2 hours later. In November 2022 the pain started up and I took 40mg of nexium for 35 days. It did not get better. Now the pain above bellybutton was insanely intense and I would get a horrible nausea and shortness of breath after eating and could not sit up. I've also been dealing with tingling legs and internal vibrations in stomach and seat area with flare ups but in December 2022 the vibrations spread up my spine to my arms, neck, face etc. Lips tremble when swallowing. Then I got myoclonic jerks of neck, back and a little in legs. My entire body tingles when relaxing and I start jerking. Ringing ears dizzy etc. Been bed ridden since January 1st due to stomach pain and neurological symptoms. Feel like my brain is inflamed. I get a horrible preassure in back of head and behind nose when standing more than a few minutes so back to bed. Jerks vibrations get worse the more I move. Can't lay my head to the sides. Besides all this my stomach pain has reached epic levels. A gnawing burning pain just above navel in a belt and sometimes higher but not as high as breastbone. I don't tolerate any food except rice and boiled chicken and boiled vegetables etc. Very small portions. After 10 years I still don't know where that pain above belly button comes from. It's never cramping so not intestines. Not under right rib so not my sluggish gallbladder. Could I have chronic pancreatitis since my stools are yellow?? Mostly horribly chronically constipated but if I eat a lot of fat I get the fatty stools but not often.
Im super scared to go back on ppis or pepcid since I suspect they caused the neorological symptoms. The pain is so bad it's like a torch above belly button.
Endoscopy didn't show anything but Ive had 9 and only once did they see esophagitis although my stomach flares start with pain when laying down and acid comes up. I just feel that the esophagus cannot explain everything.
The burning stomach pain did not improve with all that nexium.
I'm now bedridden and devastated by my head preassure and stomach pain.
Insane internal vibrations in abdomen.
Since I can't tolerate any foods I'm thinking this is way worse than just a bad gallbladder.
Can anyone describe chronic pancreatitis pain or pancreatic insufficiency??

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@jkarmazin

I was diagnosed with EPI and after a CAT scan & MRCP was told I have Asymptomatic Chronic Pancreatitis which is life altering. The radiologist said no Pancreatitis, but because of one calcium deposit, the Dr. Says I have it. I disagree. Anyone else have this? Am I just in denial?

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I have no idea and I don’t have any episodes. That is what makes me think that I don’t have it.

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@choosejoy

I don’t know anything about calcium deposits but am curious why you were tested for EPI? Did you have the traditional symptoms for that - loose, greasy stools? Is that what lead to an MRCP or was that because of something seen on the CT scan?
Those of us with chronic pancreatitis often take a PERT, really limit fats in our food intake and will agree that it is life altering.

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I had colon issues for a while and finally asked for a test for EPI. I had a Dilated bile duct a few years ago that I wanted to check on so they ordered a follow up MRCP from 4 years ago.

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@jkarmazin

I had colon issues for a while and finally asked for a test for EPI. I had a Dilated bile duct a few years ago that I wanted to check on so they ordered a follow up MRCP from 4 years ago.

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Got it. I also have a dilated bile duct that my doc just said is because of gallbladder removal.
But you still have your gallbladder so smart to have the MRCP.

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@jkarmazin

I was diagnosed with EPI and after a CAT scan & MRCP was told I have Asymptomatic Chronic Pancreatitis which is life altering. The radiologist said no Pancreatitis, but because of one calcium deposit, the Dr. Says I have it. I disagree. Anyone else have this? Am I just in denial?

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I have all the above tests and they determined part of my pancreas had atrophied, but EPI was not diagnosed until I had a poop test and my reading came back at 129 for enzymes that shoould be in the nromal range of 200-500 is normal. Have you had that test?

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@jkarmazin

I was diagnosed with EPI and after a CAT scan & MRCP was told I have Asymptomatic Chronic Pancreatitis which is life altering. The radiologist said no Pancreatitis, but because of one calcium deposit, the Dr. Says I have it. I disagree. Anyone else have this? Am I just in denial?

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I am wondering if your lipase or amylase levels are elevated and if anyone has checked you for autoimmune chronic pancreatitis. The doc doing the ERCP may have seen something in the scope that radiologist didn’t see on imaging, hence the discrepancy. It’s always confusing when different docs say opposite things. That’s where your own research can come in handy.

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@choosejoy

Got it. I also have a dilated bile duct that my doc just said is because of gallbladder removal.
But you still have your gallbladder so smart to have the MRCP.

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No, I did have my gallbladder removed 18 years ago.

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@choosejoy

I don’t know anything about calcium deposits but am curious why you were tested for EPI? Did you have the traditional symptoms for that - loose, greasy stools? Is that what lead to an MRCP or was that because of something seen on the CT scan?
Those of us with chronic pancreatitis often take a PERT, really limit fats in our food intake and will agree that it is life altering.

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@choosejoy what is EPI and MRCP?

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@rashida

@choosejoy what is EPI and MRCP?

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Hello. EPI stands for Exocrine Pancreatic Insufficiency. You can research that diagnosis. It’s definitely not fun!
MRCP is Magnetic Resonance Pancreatography which is a type of MRI scan looking at your pancreatic and bile duct systems.

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