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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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trip17 | @trip17 | Aug 5, 2020
In reply to @amandaa "I can definitely understand that. I could not do it on my own, which is why..." + (show)
@amandaa

I can definitely understand that. I could not do it on my own, which is why I had to seek medical intervention. My pain started from what they called "phantom gallstone" pain and scar tissue that built up around the surgical site where the gallbladder was removed. They did an exploratory surgery, but they had already started me on the medication. Every time I would ease off of the medication I would get flu like symptoms with intense sweating which was my body going through physical withdrawal even though mentally I was not addicted to them. Your mentality can say I don't need these, but your body has the potential to withdrawal on any medication that you have taken for a long period of time, especially pain medicine. I do wish you the best and hope either what I have provided or what Colleen has provided can help!

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Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I may improve, but they are not convinced that is causing my stomach pain, but could definitely making it worse. At the moment, at least two of them suspect a vascular issue. When I had my Nuclear Stress Test and they injected the Adenosine to make my heart beat faster, the pain in my stomach was excruciating. At first because I was yelling and kicking my feet from the pain they thought I was having a heart attack, but the Dr immediately looked at the EKG and it was all normal. Since the pain was below my heart and was in my upper stomach, technically it's not heart related. We are going to either go to the UT Southwestern Diagnosis Hospital and let them start with vascular tests and go from there, or go to a vascular surgeon first and then to UTSW if it's not vascular. My MD and pain DR are suspecting Chronic Mesenteric Ischemia after learning of this episode. If this is truly the issue, not sure we'd ever have found it if not for the heart tests. At this point I'm actually hoping I have this illness so I can get treatment and get back to life. Thanks again for all your advice!

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2 replies
Amanda Burnett | @amandaa | Aug 5, 2020
In reply to @trip17 "Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I..." + (show)
@trip17

Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I may improve, but they are not convinced that is causing my stomach pain, but could definitely making it worse. At the moment, at least two of them suspect a vascular issue. When I had my Nuclear Stress Test and they injected the Adenosine to make my heart beat faster, the pain in my stomach was excruciating. At first because I was yelling and kicking my feet from the pain they thought I was having a heart attack, but the Dr immediately looked at the EKG and it was all normal. Since the pain was below my heart and was in my upper stomach, technically it's not heart related. We are going to either go to the UT Southwestern Diagnosis Hospital and let them start with vascular tests and go from there, or go to a vascular surgeon first and then to UTSW if it's not vascular. My MD and pain DR are suspecting Chronic Mesenteric Ischemia after learning of this episode. If this is truly the issue, not sure we'd ever have found it if not for the heart tests. At this point I'm actually hoping I have this illness so I can get treatment and get back to life. Thanks again for all your advice!

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@trip17 This is wonderful news!! I truly hope that they find the root cause and they can relieve the pain that you have suffered for this long. I really appreciate the update and would love to know the end result after your appts. 🙂

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 5, 2020
In reply to @trip17 "Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I..." + (show)
@trip17

Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I may improve, but they are not convinced that is causing my stomach pain, but could definitely making it worse. At the moment, at least two of them suspect a vascular issue. When I had my Nuclear Stress Test and they injected the Adenosine to make my heart beat faster, the pain in my stomach was excruciating. At first because I was yelling and kicking my feet from the pain they thought I was having a heart attack, but the Dr immediately looked at the EKG and it was all normal. Since the pain was below my heart and was in my upper stomach, technically it's not heart related. We are going to either go to the UT Southwestern Diagnosis Hospital and let them start with vascular tests and go from there, or go to a vascular surgeon first and then to UTSW if it's not vascular. My MD and pain DR are suspecting Chronic Mesenteric Ischemia after learning of this episode. If this is truly the issue, not sure we'd ever have found it if not for the heart tests. At this point I'm actually hoping I have this illness so I can get treatment and get back to life. Thanks again for all your advice!

Jump to this post

Hello @trip17,

I too am excited to hear that your heart test might have revealed the reason for the pain you have had in your stomach. Since you mentioned in your first post above that your pain started after gall bladder surgery, I thought you might be interested in know that there are many problems that can occur after gall bladder surgery. One of these complications is called, Sphincter of Oddi Dysfunction. Here is a link to a discussion on Connect about this post-surgical problem, https://connect.mayoclinic.org/discussion/i-have-sphincter-of-oddi-dysfuncfion-it-causes-severe-upper-abdominal-pain/?orderby=DESC#chv4-comment-stream-header.

I'm also wondering, @trip17 if your gall bladder surgery was laparoscopic or invasive? If it was laparoscopic you might be interested in this discussion on Connect, https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/?pg=4

Finally, here is a video presentation by a Mayo physician, Dr. Mark Topazian, where he discusses possible problems after gall bladder surgery, https://www.youtube.com/watch?time_continue=14&v=uooaeA9tiv0&feature=emb_logo

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1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 5, 2020

@trip17 - Very interesting to see That you may have a vascular problem causing the pain. There would be a possible way to cure you.
It reminds me of my abdominal pain caused by decreased blood supply to the intestines after meals. There was a large ligament pressing on the celiac artery. The ligament was cut and blood flow restored. A few months later I needed a stent to keep the vessel open. This condition is called Median Arcuate Ligament Syndrome—MALS.
The pain I had and what you experienced during your heart test is called abdominal angina. Insufficient blood supply.
Your next vascular test will show where the problem is.
Please get back to us about the outcome.

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3 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 5, 2020

@hopeful33250 @ trip17 It is interesting in itself that the pain started after gallbladder surgery. My pain also started after gallbladder surgery- although not immediately. Sometimes I wonder if the procedure itself or instrumentation alter the anatomy somehow. I was told my condition was very rare. I was also being treated for another very rare GI condition, caused by bad effects from chemo.
The important thing is that it will be more common to test for vascular problems when working a patient up for abdominal pain.

REPLY
trip17 | @trip17 | Aug 5, 2020
In reply to @astaingegerdm "@trip17 - Very interesting to see That you may have a vascular problem causing the pain...." + (show)
@astaingegerdm

@trip17 - Very interesting to see That you may have a vascular problem causing the pain. There would be a possible way to cure you.
It reminds me of my abdominal pain caused by decreased blood supply to the intestines after meals. There was a large ligament pressing on the celiac artery. The ligament was cut and blood flow restored. A few months later I needed a stent to keep the vessel open. This condition is called Median Arcuate Ligament Syndrome—MALS.
The pain I had and what you experienced during your heart test is called abdominal angina. Insufficient blood supply.
Your next vascular test will show where the problem is.
Please get back to us about the outcome.

Jump to this post

Will do. thanks!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 6, 2020
In reply to @astaingegerdm "@trip17 - Very interesting to see That you may have a vascular problem causing the pain...." + (show)
@astaingegerdm

@trip17 - Very interesting to see That you may have a vascular problem causing the pain. There would be a possible way to cure you.
It reminds me of my abdominal pain caused by decreased blood supply to the intestines after meals. There was a large ligament pressing on the celiac artery. The ligament was cut and blood flow restored. A few months later I needed a stent to keep the vessel open. This condition is called Median Arcuate Ligament Syndrome—MALS.
The pain I had and what you experienced during your heart test is called abdominal angina. Insufficient blood supply.
Your next vascular test will show where the problem is.
Please get back to us about the outcome.

Jump to this post

@astaingegerdm Hi Inge,
Just wondering how the doctors saw this decreased blood supply to the intestines after meals. Was it some type of CT scan or other types of tests? Very interesting to say the least.

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trip17 | @trip17 | Aug 6, 2020

They haven't yet as I haven't done the tests to date, but during a stress test they injected Adenosine to raise my heartbeat. At that point, my stomach pain became excruciating. That leads them to believe my chronic stomach pain is a vascular issue. Tests are being set up.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 7, 2020

@hopeful33250 - I had so many tests done when I first started getting evaluated for my abdominal pain, but a Doppler ultrasound of the abdomen showed narrowing of arteries- change in speed of blood flow. To confirm this I had a CT angiogram of abdomen that clearly showed narrowing of the celiac artery- due to compression by a ligament.

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trip17 | @trip17 | Aug 7, 2020

Thank you! That is exactly what three of my Doctors are now suspecting now because When they injected Adenosine during the stress test my upper stomach pain became EXCRUCIATING. Because that drug constricts arteries to make the heart work harder, if something in my upper stomach has a clog, this drug would have basically closed it causing the pain. I’m seeing a Vascular Specialist hopefully next week. How was your treated and how long until you felt normal? I’ve been sick so long I don’t remember what normal feels like. -Chris

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