1. < Digestive Health

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??

Interested in more discussions like this? Go to the Digestive Health Support Group.

jkarmazin | @jkarmazin | Sep 15, 2024
In reply to @jkarmazin "I was diagnosed with EPI and after a CAT scan & MRCP was told I have..." + (show)
@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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jkarmazin | @jkarmazin | Sep 15, 2024
In reply to @choosejoy "I don’t know anything about calcium deposits but am curious why you were tested for EPI?..." + (show)
@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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1 reply
choosejoy | @choosejoy | Sep 15, 2024
In reply to @jkarmazin "I had colon issues for a while and finally asked for a test for EPI. I..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
penelope52 | @penelope52 | Sep 15, 2024
In reply to @jkarmazin "I was diagnosed with EPI and after a CAT scan & MRCP was told I have..." + (show)
@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?

Jump to this post

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?

REPLY
slkanowitz | @slkanowitz | Sep 15, 2024
In reply to @jkarmazin "I was diagnosed with EPI and after a CAT scan & MRCP was told I have..." + (show)
@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?

Jump to this post

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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jkarmazin | @jkarmazin | Sep 15, 2024
In reply to @choosejoy "Got it. I also have a dilated bile duct that my doc just said is because..." + (show)
@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.

REPLY
rashida | @rashida | Sep 18, 2024
In reply to @choosejoy "I don’t know anything about calcium deposits but am curious why you were tested for EPI?..." + (show)
@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.

Jump to this post

@choosejoy what is EPI and MRCP?

REPLY
1 reply
choosejoy | @choosejoy | Sep 22, 2024
In reply to @rashida "@choosejoy what is EPI and MRCP?" + (show)
@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.

REPLY
mauraw108health | @mauraw108health | 4 hours ago
In reply to @missingthebeach "Hello everyone, I am in my mid 30's. I would consider myself a moderate drinker with..." + (show)
@missingthebeach

Hello everyone,

I am in my mid 30's. I would consider myself a moderate drinker with a couple of very bad hangovers a year. I have been prediabetic since my 20's. I eat a high fat low carb diet normally.

I have always been healthy but this year my life changed. I began experiencing loose stools in December with oil in the toilet bowl. In January it got worse with various colors, yellow, brown, black. Undigested bits of food. Increased amounts of oil in the toilet bowl. I have been tested for parasites and food poisoning - all negative. At the end of January I was unable to eat because food made me gag and belch and I began having nightly symptoms. I was going to sleep and within an hour of falling asleep I would wake up in a sweat so bad my shirt was soaked with my stomach grumbling and on fire. My temperature would drop to 95 degrees - and I had to use heating pads to get my temperature back up. I had urges to evacuate all the food eaten during the day several times over night.

I have had
a colonoscopy (one polyp found)
an endoscopy (nothing found)
a CT with contrast (nothing found)
Lipase normal
Elastase normal
Full bloodpanel/workup normal
an MRCP without contrast - resulted in a slight signal dropout in the liver and pancreatic parenchyma suggestive of "mild iron deposition" which can be seen in cases of primary hemosiderosis. No lesions, no ductal dialation.
Tested for iron in blood - normal
SIBO - negative

The nightly symptoms have since gone away after two rounds of antibiotics from a tooth issue. Once the inflammation was gone I was left with stabbing pain in my left rib and just above my belly button. When there is no stabbing pain there is a feeling of having something lodged under my rib. There is always pain, sometimes it's mild aching. Other times it's stabbing, throbbing, I have felt shooting pains across my rib from the front to the back rib. Pins and needles, crawling and itching. My stool has stopped being loose and oily now four months later but it's pale, yellow/tan colored and bulky. Recently I have had bouts of constipation. The only time I do not feel these sensations is when I am exercising and the bloodflow is increased.

I am scheduled for a fecal fat test, an additional elastase test and a hydascan.

No answers as to what the "deposition" is on my liver or pancreas - I am being told I have IBS and to monitor my symptoms in journal.

Is this pancreatitis? My gastro team is declining to do further imaging on the pancreas because of the blood work and elastase being normal.
What else should I be pressing them to do? How can I convince them this isn't as simple as "IBS" and why are they ignoring my MRCP results!?

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From what I read from your post the color of your stools that says to me liver I had hepatitis c. I have a fatty liver and problems with the circulation to it from my hepatitis. Not to mention I ate Tylenol and Motrin like it was going out of style which I wish I really understood. I mean I knew that it was bad for you but didn't really get it. If you know what I mean, how horrible it is. You know when you're young, nothing ever touches you in your head. At least you think it doesn't right? So I'm having the same issues. They're testing my pancreas. I was on ozempic and when I had the shot it seemed fine. Then they changed me to trulicity made me feel horrible in my stomach and then the pill that is the same medication that's and it was empty. It made me feel even worse in my stomach bloated like I was always full. Also, I related to the feeling like my insides are being eaten like I'd be so hungry. At least I thought I was that it burns. My stomach was on the inside out. Now I thought it was my surgery I just had on my lung. Part of my lung was dead on the left side and it always felt like there was a hand inside my ribs because they cut out part of my lung but it started swelling recently in that same area. Not to mention back pain constantly then they thought it was my kidneys which I do have blood in. So they've given me multiple antibiotics and I've become well, not myself. But whatever I have is antibiotic resistant blood in my stool and whatever came out of me. The other night was like rainbow colored crap. Pun intended and it hurt right above my belly button right underneath my sternum and I've never felt that kind of sharp pain in my life before. Honestly what I have learned from everything I've looked up your liver, your lungs and your kidneys and I guess use your pancreas are all related. You do damage to one. There's damage to all of them going to be done so you can't just say it's one single issue because it can affect everything else in your system which is what I'm having problems with and pain. I have become almost bedridden cramps in my legs especially today. I had rabdo but I hadn't had cramps like this in years. I could not stand up but I'd lay down. I'd have to jump up just to get rid of pulling muscles in my calves. My suggestion is one thing that got rid of everything on my stomach was probiotics the vegetable kind the ones that are fermented I heard that they do wonders and I've seen some of it happen. They've made me feel better in my stomach in some ways. Also keeping my liver as healthy as I possibly can. Even though it's already been damaged. Your liver can heal but you can't heal your kidneys. And if your liver's overloaded it's going to directly affect your kidneys because if it can't process it and tries to go through your kidneys, it's just going to kill your kidneys and there's no coming back from that. So try to clean your liver out as much as possible. I've started it a regiment of things like making sure I have enough electrolytes taking fiber because I've heard it's like a little broom for your liver. It'll help sweep things out but you also want to help it get through your kidneys. So lemon water, cucumber water hibiscus tea Ginger all these things can really help, but you want to check with your doctor because some of them especially hibiscus tea can be very strong and sometimes maybe hurt you more than it does good. I drank a cup for the first night and it was unbelievablely overwhelmingly strong so maybe just make it light and just drink a little bit here and there. It lowers your blood pressure cleans out your liver also helps. Vitamin c helps your heals your liver. Cleans out your kidneys and your lungs. There are a lot of home remedies that are probably better than all the medicines that they've been giving us all the time that cause more problems and it's just one medicine to cover up another medicine symptom. Try to detox yourself from all that I know I am. I've come to the realization that I haven't been an addict when it comes to trying to fix everything with a pill and it just doesn't work that way! But my suggestion for you is for them to go after your liver. Check it once. Check it twice. Keep going to another doctor. Find a second opinion, even for your pancreas and gallbladder or whatever it could be. Don't just take one doctor's answer because they might not necessarily have the right one. Don't give up on it cuz you think you might be younger than me and I'm only 42 and it sucks feeling like this like you're 80. So let me know if you feel better or if something works for you cuz I would love to try it!

REPLY
mauraw108health | @mauraw108health | 4 hours ago
In reply to @ladyaceintx1 "@missingthebeach, Wow, my symptoms are also similar to yours. Last year, under Chiropractic care for back..." + (show)
@ladyaceintx1

@missingthebeach,
Wow, my symptoms are also similar to yours. Last year, under Chiropractic care for back issues I had several CT and MRI scans in which the Radiologist noted an "enlarged pancreas". My PCP ordered a pancreatic MRI to be prudent and found a mass-like area of enhancement on the head of the pancreas and enlargement. This started a whirlwind of events including an Endoscopic ultrasound with Biopsy to rule out cancer, a new diagnosis of Chronic Pancreatitis cause still unknown and an episode of acute pancreatitis after the biopsy which put me in the hospital for a few days. My labs are mostly normal except I have a positive ANA. I have the extremely low body temperature in which I simply cannot warm myself back up, constipation in spite of oral fluid increase and a healthy pancreatic diet and the pain under my left breast or just over my pancreas. I went thru a 47 day Steroid Trial and just had my follow up MRI last week. This test was supposed to confirm that I have Autoimmune Type 2 Pancreatitis...however, my GI called today and feels that there was no shrinkage to the mass, which the biopsy said was negative for cancer and the report said that my pancreatic cells have been severely reduced and replaced by the fatty cells which is a decline from the last test. This is not an indicator of body mass, because I am underweight, instead when the pancreatic cells begin to die, because the pancreas is attacking itself, the cells are replaced by "fatty deposits".
In your case, I would absolutely insist on imaging. If you have pancreatitis, you may not have any change to your labs if it's caught in the early stages. Unfortunately, we must be our own advocate because the physicians have their own agenda.
My GI is sending me to a Pancreatic Specialist because clearly something is wrong with my pancreas but we've ruled out cancer for now, autoimmune, alcohol, and obesity. He acknowledges that having Chronic Pancreatitis puts me at risk for cancer at any time and will continue to order imaging every 6 months.
Hope this helps and I wish you the best in your journey.

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I'm having all the same things that you have symptom wise and I'm just curious, did they find blood in your stool before all of this? I've had blood in it years ago and I kind of just baved it off because I had so many other issues. But I just realized that they're all related liver, lung, kidney and now pancreas which has called us me a multitude of problems! Constant pain and I had my lung removed on that same side and it felt like there was a hands in my rib cage and it's swollen again but I ate. I haven't done anything to that area since I had surgery which was almost 8 months ago but all the sudden it started to swell and then I started taking probiotics and I started stopping something called dumping cuz I'm a type 2 diabetic the sugar in your system that you can't absorb that comes out the oily jelly belly crap. Sorry for the way I put it but the other night I had a sharp pain in that area and my doctor asked for imaging and blood work on it and I could not believe you was even asking for it. I never even thought about my pancreas other than the fact that I was on ozempic and trulicity and then the pill kind of which actually was worse than anything. It hurt my stomach so bad but I also have liver problems but I've learned that they're all related one way or another. But the first thing that was diagnosed years ago is that I've had blood in my stool for a very long time, but because of all of my other problems I kind of pushed it to the back burner thinking it wasn't a big deal. Could I have really messed up?

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