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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 just added an excellent probiotic so I’m hoping my stools start to look normal as well. Thanks for the post.
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1 Reaction@ladyaceintx1 hey! I am still around. I have not had any serious pain since early July. I had a very small flare during our state fair as I ate something questionable (fried) but not very much. Lasted just a few days compared to three weeks when it happened last in July. I am just managing my diet at this point and staying away from any fatty and inflammatory foods. I am taking various anti inflammatory supplements and cooking with anti inflammatory oils like cold pressed olive oil, avocado oil and adding flax seed oil sometimes for added fat to my diet. I am ranging 30-45 grams fat daily without issues. I am still on the nortriptyline for the nerve pain which I havent had since July. So far so good.
Unfortunately I have some other medical issues I am working through and have a biopsy this coming Tuesday. This entire year has just been a disaster. Something just feels off about my body I guess we will find out what that is this week 🙁 . I hope your procedure went well!? How are you doing and feeling?
I did take a lot of extra long weekends this summer and saw the beach, various concerts and did tons of outdoor activities. Trying not to focus on my ill health but it keeps creeping back into my life!
I havent had much luck adding weight I have lost another 10 or so pound this summer. I think its because of the diet and the extra exercise I am doing to keep my mind off things. I am enjoying the figure in the mirror but psychologically I am terrified of eating “regular food.” American diet is over-rated anyway I dig the oats, berries, and low fat choices I am making 🙂
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3 Reactions@missingthebeach
I'm glad you're "holding steady" with the pancreatic symptoms and you're right...even the slighest food item or stress can be offending. I had an Unexplained episode in June with very severe pain that just started for no apparent reason and sent me to the ER where no test showed what was going on. After multiple pain meds and 6 hours later, they sent me home. Still don't know what was going on. I had a second EUS FNA biopsy of the pancreas and again, fortunately they say there is no cancer, but still cannot explain why I have chronic pancreatitis. It's so frustrating! My GI says maintain the pancreatic diet, monitor for any new or continuing symptoms and get a MRI every 6 months and just wait to see if cancer happens. Unfortunately, I went 17 hours without any fluid since I was nothing by mouth at midnight and my biopsy was scheduled at 1:30pm. Since pancreatitis causes chronic dehydration anyway plus being dehydrated before the biopsy cause it took the nurse 3 tries to get the IV started...by the time I got home, my heart was racing, headache, dizziness and just felt exhausted. I asked my GI to order IV hydration and was able to get it a few days afterwards. It definitely helped but still feel like more is needed. I'm sorry to hear you have another issue that requires a biopsy. Hoping it goes smoothly for you. Let me know how you feel afterwards.
It doesn't sound like you need to be losing any more weight. That is concerning.
I feel better with my new diet too and am also fond of nuts, berries and light bites. The family have also adopted the healthier choices which makes me happy! I still have nausea intermittently and alternate between Chronic constipation and diarrhea, which I assume are ongoing issues. I know what you mean about feeling "off". It's so hard when you're the type of person who is very in touch with your body and know when something is wrong...but can't find a doctor that understands what is wrong and maybe your tests come out normal but you know something is just not right. I'm still down 20 pounds but feel better and have no plans to add it. At this point, I'm just going to try and get on with my life as much as possible which includes trying not to obsess over it.
Let me know how you are after your biopsy. I'll keep you in my thoughts.
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1 Reaction@ladyaceintx1 I am doing well, got my biopsy results they were clean 🙂
As far as my rib pain issues, very tame and quiet as of late but I have been absolutely no nonsense on diet. My rib gets itchy time to time and there is a little burning sensation every once in a while but no major flare ups.
I got another MRCP to double check the first for anything possibly missed and this one came back as perfectly clean no issues no mention of iron deposits.
So I am kinda left guessing as to what exactly is going on. I know that foods that are high in saturated fat set me off. So thats how I will manage it and hope for the best!
My boyfriend and I have been experimenting with different spices and flavors to make low fat meals more appetizing, as well as baking/making our own healthier chocolate. Its been a good couple of months as we are both working on staying healthy together and has been fun in the kitchen. Happy to be eating something besides oatmeal, bananas, and boiled chicken/rice which is all I could stomach for a while there :’(
I hope you are well!
@missingthebeach
Hi! Great to hear that you are feeling better! I'm so glad your tests came back with clean results. My second Pancreatic biopsy also came back clean/negative for cancer which is great but we are still predisposed to it at any point in our life. There is still no cause known for the Chronic Pancreatitis. My GI won't call it autoimmune so I'm still left wondering. Do you have a known cause for your diagnosis? Cooking together on the kitchen sounds fun and it's great that you are so creative in finding other ways to prepare food that still fits with your required diet. I experimented with returning to a somewhat normal diet for 1 week although still avoiding alot of fat. It was a disaster. Doing so, swung me into diarrhea, bloating, dizziness and dehydration. I felt awful and have since returned to my regular no fat, no sodium, and "low" sugar...because that's my weakness but I only eat small squares of 72% dark chocolate.
My husband and son have also started to adopt healthier eating habits so we are all making an effort. My favorite is Avocado Toast!
Fall has finally arrived in Houston and of course, Pumpkin Spice drinks and food which I absolutely love, but can no longer have..but I'm enjoying the crisp, cool air.
Take care of yourself and let me know how you're feeling.
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1 Reaction@ladyaceintx1 I am doing well! Mmm pumpkin spiceeee, see if there are no caff teas! I am still eating low saturated fats, and watching the cooking oils. We stopped going out to eat entirely and invested in a freezer. Plenty of room for frozen leftovers now. I met with my GI and without any remarkable imaging and no EPI I don’t really have a diagnosis. He has mentioned that its possible I had a massive bacterial infection like SIBO that has made my small intestine sensitive to certain foods. Its possible, and hopefully I continue to get better. I have looked all over the internet to see if others have experienced the same and found nothing! I dont have any interest in going back to eating “normal” food. Frankly grosses me out to see globs of cheese and fatty foods now. I love my new diet, not too long ago I was upset about it! I have also continued to keep alcohol and caffeine out of my life as well, I just feel better overall. The great Tom Brady diets this way and he seems to be doing okay 😂. I started baking my own sweets instead of relying on store bought stuff as well, makes for a fun weekend project. This is my favorite treat:
https://blissfulbitesbytay.com/butternut-squash-whole-grain-muffins/
I use honey instead of sugar to cut the sweet, and no raisins, theres also dried cranberries that arent “craisins” which have tons of sugar.. theyre in the salad aisle and are salad toppings or whatever, they have way less sugar! The spices are really nice and fall like, nummy!
Oh, I am also learning a lot about anti inflammatory foods and diet and incorporating as much as I can on a daily basis. Whether that be turmeric in my tea, or just eating fruits like berries or veggies like broccoli and peppers.
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3 ReactionsI 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?
I have chronic pancreatitis from a medication I took. Have had 2 hospitalizations with acute pancreatitis. Pancreatitis isn’t fun!!!!!! The worst pain I’ve ever had. Now just have to watch what I eat, especially no greasy foods. Also took Creon for a while but it made symptoms way worse for me. So not on any meds. Hard disorder to treat.
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.
Sorry to hear of your acute pancreatitis episodes. Curious what medication led to pancreatitis for you?