Could this be chronic pancreatitis?
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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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.
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.
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.
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,
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.