Does anybody have gnawing stomach pain just above bellybutton?

Posted by tinatoren @tinatoren, Mar 18, 2023

Does anyone struggle with a gnawing burning pain just above belly button, often a little to the right where the head of pancreas connects with duodenum?
The pain radiates to a dull pain in a belt that wraps around my back when I stand. I cannot be up with food in my stomach because the pain becomes unbearable! Lately also nausea after eating but not every time. Lots of rumbling. I have reflux and a hiatal hernia plus IBS and slow gallbladder.
I've suffered many years from pain above bellybutton that has come and gone but since December it has been constant and I've been more or less bedridden. I get some relief a while after eating that lasts one or 2 hours but sometimes that becomes nausea instead and it feels like I ate a soap. To me it feels like my stomach but I have never ever found a single person with esophagus or stomach problems that manifest above belly button. My pain is not under breastbone or heartburn.
For 10 years I have tried to verify what organ causes the pain but failed and now Im stuck in bed with no visual finds on endoscopy (haven't gotten biopsy back yet). No explanation on abdominal mri just asymptomatic gallstones and some fat deposits in liver and pancreas.
I never have cramps and I don't suspect small or large intestine. I would just like to find someone who have that pain pattern

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

@rashida

@saucy yes, a doctor had said surgery for a hiatus hernia leaves you with more problems than it is worth, which is why I have never had surgery for it.

Jump to this post

I did not have a hiatus hernia! I had Linx surgery!

REPLY
@tinatoren

Yes. I do regurgitate stomach contents. It's just that the situation is so bad that I cannot sit or stand with food in my stomach that I have to lay down. I suspect that standing up puts weight on the ligaments that hold up stomach and if the esophagus and hernia is inflamed the law of gravity might irritate it. I have no other theory. My particular problem that has gotten me to this situation is that I get extremely hungry when laying down and the hunger is so intense that If I don't eat I would a) not sleep one minute b) get a bad migraine attack c) get an inflamed esophagus from acid Reflux coming from my empty stomach. This syndrome has held me hostage since my 20ies. I'm now 60. I have seen many doctors complaining about this since the 90ies but none warned me that I could have a reflux disease or develop a hernia from eating every night. I didn't know what a hernia or reflux was until 2014.
Now the damage is done. I tried Pepcid for 2, 5 days and the stomach got better but my neuroligal symptoms got a worse with headpressure and head jerking. Plus my Rosacea explodes, face flushes badly and I got 2 migraine attacks. Since I was on Prilosec and nexium when I got my brain damage or whatever it is I am superafraid to try any ppi again before I get some answers. But my stomach Hurst so bad I can't even be up 15 min. I have a contrast mri of brain and cervical spine on the 31st. I m trying to hold on but Its very hard.
What on earth did people do before pepcid and ppis??
Did they all just die of esophageal cancer and or pain? I need acid blockers so badly but I don't want to destroy my brain. I m already starting to have nerve damage in my right arm. If it was just tingling and pain and jerking and trembling then it could be any neuro motor disease or whatever. The strange thing though is the intense pressure. It's right in the back of my skull where the neck vertebrae goes into my skull. The more I m up and move my head the more intense the pressure and the ringing in my ears. Then when laying down my head jerks from side to side when I relax. It is not like some obscure nerv issue where your brain feels normal but your limbs do funny things. This is inside my brain and it can feel like I'm passing out just by closing my eyes! I'm super dizzy but I have no balance problems unless I tilt my head back then I fall backwards. There must be something wrong in the cranial nerve area but I don't know what.

Jump to this post

@tinatoren my heart goes out to you because I know how frustrating it is not knowing what is going on in your body - been there! I am praying that the tests you will be getting on the 31st (of March?) will provide clues to what is causing all your problems. I am sure they are inter related and only once you know how they are related to each other at least you can work on solutions! Even if the problems are not related, just knowing what the causes you could at least look for solutions to each one.

Are you able to sleep with the head of the bed raised? I have two risers under the two casters at the top of my bed and ever since I did that, I have not had acid/content regurgitation. Reflux, I still have but not as bad as it used to be but now when I do have reflux - either when upright or lying in bed, a few sips of water help relieving the pain within a minute or two. Untreated continual acid reflux can lead to Barrett’s esophagus which eventually could lead to esophageal cancer. My father got that.

I wish we could afford one of those mechanical beds that raise and lower the head of the bed so my husband wouldn’t have to put up with the bed being on an incline on his side too. 😀

REPLY
@saucy

I did not have a hiatus hernia! I had Linx surgery!

Jump to this post

@saucy what is Linx surgery?

REPLY
@tinatoren

Most private clinics only take people with private healthinsurance. If you have that a whole world opens up but I can never get that since Im on disability for fibromyalgia since meny years. There are no neurologists that receive paying customers. You have to have a referral.
I could get some mris and things like a colonoscopy but not much else is offered. We have such a huge health crisis here in Sweden and such a shortage of doctors. The patient safety is threatened.
I've been 90 percent bedridden since December and if I have a condition that could have benefitted from for example steroid treatment it's too late now.
The pain and suffering people are subjected too is unbelievable! The only lucky ones are the standard heartattack or traffic accident kind of injuries which get treatment right away. Unusual diseases or cancer usually get diagnosed way too late.
Primary clinics have a range of standard bloodtests and if you pass those they usually don't want to go further.
Which is insane since 90 percent of early cancers and hundreds of other diseases do not show up on standard blood panels.
I think a lot of countries are struggling now though. I hear stories from US, Australia, Canada and lots of countries about the struggle people have to get medical care. In the US it comes down to what healthinsurance you have.
BUT one important factor that is mostly overlooked is gender and employment.
If you are a man with employment here you will get better help. If you are a woman you tend not to be believed and if you are a retired woman they can bury you in waiting time because the doctors dont have to sign off on sickleave and they don't have to explain to an employer why you're absent for 6 months waiting for a bunch of tests.

Jump to this post

@tinatoren - what you’ve said here is exactly the situation in Canada too:

“ BUT one important factor that is mostly overlooked is gender and employment.
If you are a man with employment here you will get better help. If you are a woman you tend not to be believed and if you are a retired woman they can bury you in waiting time because the doctors dont have to sign off on sickleave and they don't have to explain to an employer why you're absent for 6 months waiting for a bunch of tests.”

My husband merely has to mention something and gets immediate attention and he is given the necessary tests and procedures. I, on the other had, get waved away.

About 18 months ago we were in a car accident. The ambulance driver “strongly advised” that my husband be taken to the hospital. I had a cut on my head which they cleaned up in the ambulance and told me it was not necessary for me to go to the hospital. I knew if I had insisted on going I would get no more treatment anyway. My husband, on the other hand was taken to the hospital, given a thorough body exam including X-rays and CT scan, and they found something that would have gone unnoticed otherwise, because he never had any symptoms. I am relieved, of course, that they found a possible problem in him that we could take care of before it got worse but the fact still remains that I was not taken as seriously simply because I was a woman. We were both in the same car accident, both riding in the front and had the same impact with the car ahead of us. He had no visible injuries but I had a cut on top of my head that was bleeding. Strangely enough, when I mentioned the accident to my physician and asked if I should get a CT scan of my head, she just glanced at my cut (which was scabbed over by then) and said it was not necessary. 🤷🏼‍♀️

REPLY
@rashida

@tinatoren - what you’ve said here is exactly the situation in Canada too:

“ BUT one important factor that is mostly overlooked is gender and employment.
If you are a man with employment here you will get better help. If you are a woman you tend not to be believed and if you are a retired woman they can bury you in waiting time because the doctors dont have to sign off on sickleave and they don't have to explain to an employer why you're absent for 6 months waiting for a bunch of tests.”

My husband merely has to mention something and gets immediate attention and he is given the necessary tests and procedures. I, on the other had, get waved away.

About 18 months ago we were in a car accident. The ambulance driver “strongly advised” that my husband be taken to the hospital. I had a cut on my head which they cleaned up in the ambulance and told me it was not necessary for me to go to the hospital. I knew if I had insisted on going I would get no more treatment anyway. My husband, on the other hand was taken to the hospital, given a thorough body exam including X-rays and CT scan, and they found something that would have gone unnoticed otherwise, because he never had any symptoms. I am relieved, of course, that they found a possible problem in him that we could take care of before it got worse but the fact still remains that I was not taken as seriously simply because I was a woman. We were both in the same car accident, both riding in the front and had the same impact with the car ahead of us. He had no visible injuries but I had a cut on top of my head that was bleeding. Strangely enough, when I mentioned the accident to my physician and asked if I should get a CT scan of my head, she just glanced at my cut (which was scabbed over by then) and said it was not necessary. 🤷🏼‍♀️

Jump to this post

Thanks for all your replies!
It really sounds like Canada isn't the promised land I thought it was. I used to dream about moving there but Healthcare seems worse than ours! I'm sorry to hear about how much you have to struggle just to get a doctor. Here we can choose our primary clinic according to law but we cannot choose which doctor in the clinic will see us. I've already tried tried 2 clinics and I'm on my 3rd.Problem here is that most clinics have foreign doctors often not fluent in Swedish and often way too authorative with low respect for women plus not well educated. I often know a lot more about my illnesses than doctor do because I do so much research. I want a doctor to be respectful of my input since I ve lived with my body for 60 years and I know it better than the doctor. I want to be able to have an intelligent conversation and not be told I Google too much. Doctors are not gods and they don't know everything. I'm very sceptical to medications in general and I prefer an integrative approach. Very little research ha been done on why some people have a genetic makeup that makes them intolerant to medications. They just want to prescribe pills. I have had bad reactions to most medications, probably also because of my compromised microbiome and inflammation. I have severe Rosacea and many signs of inflammation in my body but my crp is 5 so it doesn't show.
I really hope the find something fixable with my head cause this is unbearable. I need to know also if there's evidence of a possibility of a reaction to the Prilosec and nexium. I know that I have a very severe problem with my reflux and if I can't take ppis then I am doomed because I really really can't take pepcid. That is what worries me the most right now. My stomach is so very bad but Im so afraid to try Prilosec and get a massive seizure or something. I took 5 pepcid over 2,5 days and quit yesterday and today my head pressure is off the charts. I started jerking my head again. If that is because of pepcid which I wasn't even on when this started then I'm afraid I could die if I tried Prilosec. I'm just so scared.
Thanks for being so kind. We could talk on msn if you want a friend in Sweden

REPLY
@tinatoren

Thanks for all your replies!
It really sounds like Canada isn't the promised land I thought it was. I used to dream about moving there but Healthcare seems worse than ours! I'm sorry to hear about how much you have to struggle just to get a doctor. Here we can choose our primary clinic according to law but we cannot choose which doctor in the clinic will see us. I've already tried tried 2 clinics and I'm on my 3rd.Problem here is that most clinics have foreign doctors often not fluent in Swedish and often way too authorative with low respect for women plus not well educated. I often know a lot more about my illnesses than doctor do because I do so much research. I want a doctor to be respectful of my input since I ve lived with my body for 60 years and I know it better than the doctor. I want to be able to have an intelligent conversation and not be told I Google too much. Doctors are not gods and they don't know everything. I'm very sceptical to medications in general and I prefer an integrative approach. Very little research ha been done on why some people have a genetic makeup that makes them intolerant to medications. They just want to prescribe pills. I have had bad reactions to most medications, probably also because of my compromised microbiome and inflammation. I have severe Rosacea and many signs of inflammation in my body but my crp is 5 so it doesn't show.
I really hope the find something fixable with my head cause this is unbearable. I need to know also if there's evidence of a possibility of a reaction to the Prilosec and nexium. I know that I have a very severe problem with my reflux and if I can't take ppis then I am doomed because I really really can't take pepcid. That is what worries me the most right now. My stomach is so very bad but Im so afraid to try Prilosec and get a massive seizure or something. I took 5 pepcid over 2,5 days and quit yesterday and today my head pressure is off the charts. I started jerking my head again. If that is because of pepcid which I wasn't even on when this started then I'm afraid I could die if I tried Prilosec. I'm just so scared.
Thanks for being so kind. We could talk on msn if you want a friend in Sweden

Jump to this post

@tinatoren I agree with you 100%!

Yes we certainly can talk further on problems with healthcare, etc. on Messenger. I have sent you a private message. This way, we can keep this thread on topic so you don’t miss out on other useful information from other members on your original question.

REPLY
@rashida

@loribmt @tinatoren I definitely have GERD as I get chest pain due to acid reflux. I have tried getting off Lanzoprazole but that is the only medication that he,ps with my reflux. I also have occasional stabbing pain in my upper right quadrant, just under the ribs which I just tolerate since no doctor can tell me what causes it, and ultrasounds show nothing.

Jump to this post

That pain can be duodenal inflammation and/or ulcers. Have endoscopy.

REPLY

Possibly a hernia in that area?

REPLY
Please sign in or register to post a reply.