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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@kiwigirl63

Hi, I'm new here and from New Zealand.
I have Chronic Pancreatitis and have had it, about 15 years now, I was diagnosed in Australia, and I have had many, many Acute Pancreatitis episodes, which I don't wish on anyone, they are hell
My bloods, amalyse/lipase were at the highest ever at 3,200,after been medically induced by an ERCP, so no more of those in Australia.
A year or so ago, I got AP again, vomiting copious amounts of skinny,green bile,so sick,and couldn't stop vomiting and the pain in my stomach, crippling.
So in those episodes in Australia I would go to hospital, placed on a drip, and given a PCA for pain relief, and rest of the pancreas, that is all they can do.
Then I came home to New Zealand and because I needed pain meds, only one lot, as went off a lot, I was told, I was an addict, so not true, I have real pathology but they don't believe me here.
My cells in my pancreas are burnt out, so if I have an acute episode my amalyze lipase don't elevate, I get the shakes, a temp,and sick.
Last acute episode I was sent home, I can't have any pain relief, as a nasty Dr made sure he stopped that, abusing his power

4 years ago, I saw a gastro specialist with my then husband, he said come back in a few years, so I can diagnose you with Pancreatic Cancer.. I was horrified but what he meant was Chronic Pancreatitis can lead to Pancreatic Cancer, I never saw the Dr again as no follow up, never has been.
I get pain flares more frequently these days, I have nothing for pain as they won't let me, yes inhumane.
The pain comes and goes, I used to take Creon, it's a digestive enzyme for CP, but I found it not helpful as the episodes come and go.
I can't and don't eat much, and yellow floaty stools, that smell yucky.
Oh yes, last CT years ago, my pancreas is dying, it's called Atrophy so no follow up, I don't even have a local Dr, I see a nurse, that's it.
I travel an hour there, and back, as short in Drs in my country.
She keeps saying let's do bloods, every time.. I requested a CA 19-9 which is a Tumor Marker for the pancreas.
It's is elevated, to only 49,but has risen, no action by the nurse, or anyone
Last week I saw the Nurse as my stomach upper and my back same area, was in agony, I said to her, Look the amalyze or lipase don't show, my cells are burnt out, and she pushed down on pancreas and set the pain worse.
I asked for the CA 19-9 test, she didn't do it, she wasn't listening, I went back, then she did it.
So my Gamm GGT, AST(liver and pancreas enzymes)are rising and very high too.
My platelets low, my WBC and neutrophils, and lymphocytes all low, and dropping.
Yet here I am, no follow through
Im on my own, and I know I will probably get Pancreatic Cancer.
I have lost 20 kilos in last year, no action and lastly I'm so, so so tired
Next is a bone marrow biopsy that I had to pay big money, to go private, the tiredness is crippling, I don't know why, but that's a run down.
Healthcare in this country is 3rd war almost, and I have been labelled as something I'm not.
I'm 61 soon, I'm sick, and getting sicker, but the attitude of health care, is called, oh sorry, you fell through the cracks, and that's it, nothing I can do, if in pain, I have to suck it up, I used to take pain relief as I needed it, I stopped taking it 4 times to lower my tolerance on this 4th time, this nasty Dr said, he's going to make sure, even if I have cancer, that I never get pain relief ever again, because I made a complaint about him, serious too, so he didn't like it, so everyone listens to Drs don't they, even when they lie, which he has, so no matter what, even if it's advanced to cancer, probably has, no action, no relief, no dignity, no life, that's me though, my story.
Chronic Pancreatitis is serious, I have double duct sign, no action, pneumonia, no action.
A splenic Artery Aneurysm, no action.
Cirrhosis of my liver, no Dr watching that,
It's really bad, as I was a nurse in Australia now I'm sick in New Zealand and can't get any help, they don't care, through the cracks, I went, and stay.
I hold on to faith, God, because HE is the only one walking beside me, through this nightmare.
Feel free to ask questions if I left anything out about Chronic Pancreatitis.
I also have a gallstone, surgeon refused to remove it, it got stuck once in my bike duct, that was a living hell, they won't remove it.
So I will leave it there
All the best
Anne-Marie

Jump to this post

I have chronic pancreatitis, I take creon it does help with flares sometimes, but I still have very smelly poop, I had to change my diet, its a very horrible disease, but my Dr said its not related to pancreatic cancer, she doesn't think it will develop because of it , I'm not in horrible pain over the counter meds and a heating pad help me, I'm sorry about all your going through, Drs sound horrible where you live.

REPLY
@bluedog35

I have been struggling with abdominal pain for the last 6 months that gets worse when I eat or drink. I have lost 35lbs. I am nauseous all the time and unable to eat without pain, even a bland diet or liquid diet, low fat etc.. I have had CT Scans, Ultrasounds and upper endoscopy, all normal. I have had low lipase levels and borderline vitamin deficiencies. Liver enzymes have also been elevated. I have had a partial gastrectomy due to gastroparesis over 12 years ago and have not had any issues until the last 6 months. Recently had a HIDA scan and it showed slow emptying of bile. They tried to perform an ERCP and were able to get to bile duct but unable to enter it due to anatomy. The angle was such that they could not get the wire set correctly. They did see bile emptying so we know it is not completely blocked. There is also a blind loop that is 5cm long from the partial gastrectomy which a concern was food maybe getting stuck although there did not seem to be any in the loop during the ERCP. Just trying to see what should they look at next? Could if be chronic pancreatitis or something else..

Jump to this post

I am so sorry you are struggling like this. I am wondering with your gastrectomy if you know if they removed or bypassed your pyloric sphincter. I just took a nutrition class and I learned that the gastrectomy surgeries that do that and gastrectomy surgeries that create blind loops are the most challenging to manage. Those procedure types can be quite problematic as far as absorption of nutrients as well in the case of a blind loop one gets overgrowth of bacteria and fungus which causes issues. As well you have nutrients dumping straight into the part of the small intestine that was not designed to handle that. My teacher who is a registered dietitian did have some strategies for managing the situation. If you haven’t already seen a registered dietitian for help with this that might be super helpful. She said the surgeons do these procedures and then just move on to the next patient. No accountability at all for chronic issues the patients are left dealing with the feast of their lives. Registered dietitians also have strategies for managing chronic pancreatitis. So some kind of plan that works both those angles while you get this all sorted I am thinking could help you feel better regardless the ultimate cause that is determined or even if the cause is a combination of both conditions. My teacher said it is super rare that people only have one system in their body that is experiencing dysfunction. That we learn these diseases one at a time in isolation and then when one sees an actual patient they almost are dealing with having multiple conditions.

REPLY
@kiwigirl63

Hi, I'm new here and from New Zealand.
I have Chronic Pancreatitis and have had it, about 15 years now, I was diagnosed in Australia, and I have had many, many Acute Pancreatitis episodes, which I don't wish on anyone, they are hell
My bloods, amalyse/lipase were at the highest ever at 3,200,after been medically induced by an ERCP, so no more of those in Australia.
A year or so ago, I got AP again, vomiting copious amounts of skinny,green bile,so sick,and couldn't stop vomiting and the pain in my stomach, crippling.
So in those episodes in Australia I would go to hospital, placed on a drip, and given a PCA for pain relief, and rest of the pancreas, that is all they can do.
Then I came home to New Zealand and because I needed pain meds, only one lot, as went off a lot, I was told, I was an addict, so not true, I have real pathology but they don't believe me here.
My cells in my pancreas are burnt out, so if I have an acute episode my amalyze lipase don't elevate, I get the shakes, a temp,and sick.
Last acute episode I was sent home, I can't have any pain relief, as a nasty Dr made sure he stopped that, abusing his power

4 years ago, I saw a gastro specialist with my then husband, he said come back in a few years, so I can diagnose you with Pancreatic Cancer.. I was horrified but what he meant was Chronic Pancreatitis can lead to Pancreatic Cancer, I never saw the Dr again as no follow up, never has been.
I get pain flares more frequently these days, I have nothing for pain as they won't let me, yes inhumane.
The pain comes and goes, I used to take Creon, it's a digestive enzyme for CP, but I found it not helpful as the episodes come and go.
I can't and don't eat much, and yellow floaty stools, that smell yucky.
Oh yes, last CT years ago, my pancreas is dying, it's called Atrophy so no follow up, I don't even have a local Dr, I see a nurse, that's it.
I travel an hour there, and back, as short in Drs in my country.
She keeps saying let's do bloods, every time.. I requested a CA 19-9 which is a Tumor Marker for the pancreas.
It's is elevated, to only 49,but has risen, no action by the nurse, or anyone
Last week I saw the Nurse as my stomach upper and my back same area, was in agony, I said to her, Look the amalyze or lipase don't show, my cells are burnt out, and she pushed down on pancreas and set the pain worse.
I asked for the CA 19-9 test, she didn't do it, she wasn't listening, I went back, then she did it.
So my Gamm GGT, AST(liver and pancreas enzymes)are rising and very high too.
My platelets low, my WBC and neutrophils, and lymphocytes all low, and dropping.
Yet here I am, no follow through
Im on my own, and I know I will probably get Pancreatic Cancer.
I have lost 20 kilos in last year, no action and lastly I'm so, so so tired
Next is a bone marrow biopsy that I had to pay big money, to go private, the tiredness is crippling, I don't know why, but that's a run down.
Healthcare in this country is 3rd war almost, and I have been labelled as something I'm not.
I'm 61 soon, I'm sick, and getting sicker, but the attitude of health care, is called, oh sorry, you fell through the cracks, and that's it, nothing I can do, if in pain, I have to suck it up, I used to take pain relief as I needed it, I stopped taking it 4 times to lower my tolerance on this 4th time, this nasty Dr said, he's going to make sure, even if I have cancer, that I never get pain relief ever again, because I made a complaint about him, serious too, so he didn't like it, so everyone listens to Drs don't they, even when they lie, which he has, so no matter what, even if it's advanced to cancer, probably has, no action, no relief, no dignity, no life, that's me though, my story.
Chronic Pancreatitis is serious, I have double duct sign, no action, pneumonia, no action.
A splenic Artery Aneurysm, no action.
Cirrhosis of my liver, no Dr watching that,
It's really bad, as I was a nurse in Australia now I'm sick in New Zealand and can't get any help, they don't care, through the cracks, I went, and stay.
I hold on to faith, God, because HE is the only one walking beside me, through this nightmare.
Feel free to ask questions if I left anything out about Chronic Pancreatitis.
I also have a gallstone, surgeon refused to remove it, it got stuck once in my bike duct, that was a living hell, they won't remove it.
So I will leave it there
All the best
Anne-Marie

Jump to this post

Oh my gosh- I thought the doctors and nurses lacked a shred of empathy here in the states but what you describe is criminal. Basically, no one is helping you and on top of that they are denying you pain control and pronouncing it is just a matter of time until you get cancer. Which by the way is so totally not true. Yes there is an increased risk for pancreatic cancer but it is basically an unquantifiable risk. And like all kinds of cancer , pancreatic cancer risk is also increased by risk factors that are in your control to modify to the positive. Risk factors like smoking, drinking, inflammation level, vitamin deficiencies , oxidative stress , chronic pain, mental stress etc. these types of additive risk factors are modifiable to a great extent with changes to diet and lifestyle changes. Things they should be helping you with. Instead , I imagine every time you see your “care” NOT team you are made to feel even worse. Do you have any other options for care where you live? Like seeing a registered dietitian? Or access to medical cannabis or CBD to control the pain? Any kind of alternative care options? Would it make sense to move back to Australia instead of staying in New Zealand? It sounds like in Australia you had more options for informed care. What you are enduring is completely inexcusable. And perhaps driven by ignorance about the condition. The hold over legacy of the time when people thought only alcoholics got Pancreatitis. So no one bothered to help them . Now it is known that is just not true. However change comes slowly to health care and whomever you are dealing with has not kept up with the times. Yes alcohol will definitely damage the pancreas but many other mechanisms do as well. Like. The gallstones you mention ( the most common cause), genetics, congenital defects, smoking, high triglycerides, infections, damage from medications taken, autoimmune pancreatitis. Both gallstones, and autoimmune are more common in women as well some of the medications that damage the pancreas , like estrogen are more commonly given to women. The medical care you are receiving is evidently completely uniformed about any of this. And if they are uniformed I do not see them ever helping you feel better. You deserve so much better I pray you can find a way forward to remain hopeful and to find someone else to help you manage your condition.

REPLY

It has not been confirmed that it is chronic pancreatitis yet. I have been in a continuous flare since October with no relief. I have not been able to find anything that settles it or that doesn't cause pain. I have been eating, rice, broth and plain potatoes and 2-3 bites of plain chicken when I can force it down. It has been very frustrating. The last time my pancreatic enzymes were checked they were very low which I read could happen with chronic but not acute pancreatitis. The doctors don't seem to be in agreement,

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@cc8

I am so sorry you are struggling like this. I am wondering with your gastrectomy if you know if they removed or bypassed your pyloric sphincter. I just took a nutrition class and I learned that the gastrectomy surgeries that do that and gastrectomy surgeries that create blind loops are the most challenging to manage. Those procedure types can be quite problematic as far as absorption of nutrients as well in the case of a blind loop one gets overgrowth of bacteria and fungus which causes issues. As well you have nutrients dumping straight into the part of the small intestine that was not designed to handle that. My teacher who is a registered dietitian did have some strategies for managing the situation. If you haven’t already seen a registered dietitian for help with this that might be super helpful. She said the surgeons do these procedures and then just move on to the next patient. No accountability at all for chronic issues the patients are left dealing with the feast of their lives. Registered dietitians also have strategies for managing chronic pancreatitis. So some kind of plan that works both those angles while you get this all sorted I am thinking could help you feel better regardless the ultimate cause that is determined or even if the cause is a combination of both conditions. My teacher said it is super rare that people only have one system in their body that is experiencing dysfunction. That we learn these diseases one at a time in isolation and then when one sees an actual patient they almost are dealing with having multiple conditions.

Jump to this post

I am not sure about the pyloric sphincter but there is a blind loop which is longer than normal. Because they did not see actual food stuck they don't seem to be convinced that that is the issue, I am not convinced. Food may not be permanently stuck but I am thinking if it is stuck for a period of time that could be what is causing my pain. Thank you for the idea of a registered dietician. I have not been but that maybe helpful.

REPLY
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