Chronic upper stomach Pain/Nausea going on 4 yrs. ALL TESTS NEGATIVE

Posted by trip17 @trip17, Jul 31, 2020

I have been dealing with upper stomach pain and nausea for 4 years. Started two years after gallbladder removal. On 12/27/18 I had a Nevro H10 nerve block device implanted. Within a couple of months, the device was working well, probably 80% improvement (which I'd take now!). I was back to working out, biking, felt like I got my life back! Then after about 4-5 months, the symptoms started coming back. It's been 14 months now and Nevro still can't capture the working setting again. In the meantIme, the problem has worsened in the past 4-6 months. I wake every day with pain in the middle of my stomach, just below rib cage. It's more of an "upset stomach/nausea" pain and usually let's up a little about an hour after waking up. Sometimes it can also make me feel "fluish" and overall crappy, especially if I exert myself at all. If I start working on a project at home, I wIll start to feel lousy and have to rest. It will also sometimes be accompanied by extreme sweating. I cannot even play a simple round of golf. I've had EVERY Gastroenterology test and all is normal. Even a camera pill. I also had a series of heart tests done and everything is fine. Blood tests had shown a very low Iron levels, but we did iron IV's to get that back up. In addition to the stomach, my feet started going numb and getting pain with pins and needles, especially when I sleep. Yesterday, I was diagnosed with Neuropathy and some nerve damage in my feet. On Monday I'm having tests to determine what is causing it. I do not have diabetes. I am also having a glucose tolerance test Monday. Neurologist said "it's possible" that what's causing my feet Neuropathy "could" be causing my stomach issue. I personally don't believe that. Started seeing a Chiropractor again too. He feels the stomach pain could be gas/air bubbles that are getting trapped in my esophagus area. He's working the area to stimulate the nerves and loosen the gas pockets.I also use a CPAP machine for sleep apnea, which alarms him because it forces constant air into my stomach all night long. I'm switching to a bi-pap machine to see if it helps. My MD tried a steroid pack last week, but it didn't help. In 6 months I've had just ONE day (actually 3/4 of day) of no pain and normal energy. It's very hard and I cannot live like this anymore. Since I can't travel to the Mayo Clinic due to the Pandemic, I am having my MD refer me to a local Diagnostic clinic/hospital. The closest one to me is UT Southwestern in the Dallas area. Hopefully they can figure out what is causing this. All Liver and Pancreas tests are also fine. I've had a HIDA scan to make sure the "plumbing" where my Gallbladder was removed is not causing it (it's in that area). This problem can vary day to day and even hour to hour in intensity and can go from "ok" to bad and back again. The ONLY thing that takes the pain away is Hydrocodone. I had to take anywhere from "zero" to 1.5 pills to control it for the last 5 years. Now over the past 4 months, I have had to take 2 to 3 pills per day to control the pain and nausea (I also take nausea prescription, but it doesn't work well anymore. I am very concerned about addiction so working with my Doctor and making sure I take no more than three in a day. As far a prescriptions, I take Trintellix and Adderall (one pill each) in the morning along with a new blood pressure med I just started taking a month ago. I have not been able to sleep for years so I take Clonazepam for sleep. No food allergies or gastrointestinal problems. If anyone has a guess or if any of this sounds familiar, I'm open to ANYTHING! I also do Cryotherapy once in a while and the cold does help, but it doesn't last. I'm asking my pain Dr about a SPLANCHNIC pain shot to see if he thinks it will hep until we can figure this out or get my NEVRO device to work. THANK YOU!!!
Chris

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@marye2

I have a sensitive stomach, along with food intolerances, and so there are things to try, with diet (avoid processed foods, sugar, dairy, whole wheat and night shades). Otherwise, there are good practices on webmd that can also make a difference. I am on Pantoprozole, but I also take an acid reducer at bedtime. I drink hot tea (chamomile) before bed as well. For sleep, I ended up with a sleep study and also cognitive behavior training (!!) and that really helped. No sleeping pills, but I do 5mg of 1:1 marijuana.
https://www.webmd.com/heartburn-gerd/triggers#:~:text=Heartburn%20triggers%3A%20Heartburn%20and%20diet,-A%20number%20of&text=black%20pepper%2C%20garlic%2C%20raw%20onions,drinks%2C%20including%20tea%20and%20soda

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I have been researching
A nootropic BPC157 that can be a capsule, a nasal inhaler and an injectable.
People who have been treating their various gut issues have been saying it is working to eliminate their various issues. Their pain is
Helped greatly. I can’t speak to their complete healing as I am just commenting on their testimonies, and am just another person looking to heal my stomach pain.

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@abc3rd

I have been researching
A nootropic BPC157 that can be a capsule, a nasal inhaler and an injectable.
People who have been treating their various gut issues have been saying it is working to eliminate their various issues. Their pain is
Helped greatly. I can’t speak to their complete healing as I am just commenting on their testimonies, and am just another person looking to heal my stomach pain.

Jump to this post

Hi, @abc3rd. It doesn't look like BPC157 has been widely studied on humans and isn't available in the United States. You can read a bit more about it here, https://www.usada.org/spirit-of-sport/education/bpc-157-peptide-prohibited/. The article does state that there may be some benefits, but that they need to be further studied.

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@JustinMcClanahan

Hi, @abc3rd. It doesn't look like BPC157 has been widely studied on humans and isn't available in the United States. You can read a bit more about it here, https://www.usada.org/spirit-of-sport/education/bpc-157-peptide-prohibited/. The article does state that there may be some benefits, but that they need to be further studied.

Jump to this post

There are no robust studies for BPC157 fixing stomach issues, which are often physical, rather than chemical. I am pretty leery of these supplements, including intolerances and interactions with other drugs. Most people with MCTD are on prilosec or a similar drug. You can also look at Terry Wahls' protocol about mitochondrial issues and autoimmune. That is why many do adapt their diets, timing of meals and so on. My gastroenterologist was pretty good at diagnosing my issues, and for the rest it has come down to food choices. Keep a diary for a few weeks to note what you ate and drank as well as how you felt during the day. Also, there are good drugs for nausea. https://www.webmd.com/heartburn-gerd/triggers

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@ukyank

Oh... and I should add, we are currently pinning our hopes on a HIDA scan but the there is a shortage of the radioactive dye here apparently. Hopefully we will have the scan (that I have been begging for for 3 years!) within the next month.

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Hey, I had a HIDA scan several years ago and it was negative so they didn't think it was my gallbladder. Several months later I still was having the pain and was hospitalized for a week as I had lost so much weight because it hurt when I ate. Then another scan was done and they found I had a diseased gallbladder (no gallstones though) and when it was removed I was able to eat without hurting. This past year there's an upper abdominal burning sensation (not reflux and not inside stomach) and it doesn't matter what I eat, it even burns when I don't eat anything. I recently started taking Artichoke extract as I researched Functional Dyspepsia and maybe it will help. I will try anything. Best wishes to you.

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Diagnosed w chronic GERD, E.O.E., Gastritis & theres no test for IBS & i dx myself from symptoms.
Cholecyectomy 2019. Came out w stent for 6 wk.
Painful URQ & stomach distensions. Given "aggressive" treatment for diarrhea. Colesevlam 625mg 3x day. Dicyclomine 2x day. Saw dr told him I haven't gone in 3 days (12/23). I believe he should have reassessed D meds. EUS, Colonscope, U.S., CT., MRI, MRCP, ERCP.
Aced them all.
Still w painful distensions & now I eat little. As not to feed the bear.

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I didn't mention my dr said URQ pain, diarrhea & painful stomach distensions is my new normal. I thought for the very reason I had cholecystectomy some of us are life sentenced to this.

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@mmorley

Hey, I had a HIDA scan several years ago and it was negative so they didn't think it was my gallbladder. Several months later I still was having the pain and was hospitalized for a week as I had lost so much weight because it hurt when I ate. Then another scan was done and they found I had a diseased gallbladder (no gallstones though) and when it was removed I was able to eat without hurting. This past year there's an upper abdominal burning sensation (not reflux and not inside stomach) and it doesn't matter what I eat, it even burns when I don't eat anything. I recently started taking Artichoke extract as I researched Functional Dyspepsia and maybe it will help. I will try anything. Best wishes to you.

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Tag me if you have any info re burning in upper abd. I've had a Hida scan too.
It's not heartburn. Burning, nawing, sometimes feel like guts have been hosed. So painful & dr said no pain meds they're constipating. I'm preoccupied & life's revolved around me 5 y's. i'm a CNA 35y's & never thought I'd become the patient.

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Shawn again. w stomach distensions; from abd defined to 10 months pregnant. Had put pressure on intestines. I had anal prolapse & umbilical hernia op. w hardening of stomach wall one test result.
3 Dr's said common bile duct & pacreatic duct were blocked w test results
6/10/2024
Until last possible test run 10/10 - an EUS result said Neg. Blockage. Note: common bile duct and pancreatic duct dilation.
Could only these 2 factors cause very painful distensions ?

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Hey, sorry to hear you're still having this chronic pain. My common bile duct and pancreatic duct were also shown to be dilated but that is not unusual based on the symptoms we are having. And the scans/tests/endoscopy/colonoscopy I had were negative, like yours. The local GI dr. diagnosed me with Functional Dyspepsia and with some of the symptoms you're describing you may want to research that. The only thing that seems to slightly ease that burn for me is an ice pack to my upper abdomen. It doesn't seem to matter what I eat so, I'm trying to eat smaller amounts to see if that helps. And when I see my primary doctor in December I'm going to ask him to refer me to a GI Dr. in another town for second opinion. It certainly was better when I was a nurse taking care of patients as opposed to being one.

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@mmorley

Hey, sorry to hear you're still having this chronic pain. My common bile duct and pancreatic duct were also shown to be dilated but that is not unusual based on the symptoms we are having. And the scans/tests/endoscopy/colonoscopy I had were negative, like yours. The local GI dr. diagnosed me with Functional Dyspepsia and with some of the symptoms you're describing you may want to research that. The only thing that seems to slightly ease that burn for me is an ice pack to my upper abdomen. It doesn't seem to matter what I eat so, I'm trying to eat smaller amounts to see if that helps. And when I see my primary doctor in December I'm going to ask him to refer me to a GI Dr. in another town for second opinion. It certainly was better when I was a nurse taking care of patients as opposed to being one.

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Dyspepsia has been dx in my chart. Drs in mi don't tell you. Be glad we have access. Been on protonix 40mg 22 y's. Personally, i think if we discipline ourself in GERD diet, though 1st impressions - it's limited - I'll starve.
We will not. Take what you knows eatible, be creative. Heating pad, hot bath soaks, put hot wash cloth on belly in tub. Do you alternate ice ?

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