Chronic Abdominal Pain

Posted by lz5b00 @lz5b00, Mar 21, 2012

I have had acute abdominal pain since April 2011 and it has escalated over the months.. The pain begins early morning, remains unrelenting and escalates throughout the day. It is sharp at times and gnawing most of the time. It radiates down from my sternum and to the lower left of my abdomen. My family doctor nor GI specialists cannot find the cause. I have had CT scans, ultrasound, video capsule endoscopy, colonoscopy, blood tests, push endoscope, H pylori tests, ova stool test for parasites and MRI, to name a few. EVERY test result has been returned as "unremarkable"--no cause found. I am currently taking Paxil 25mg, Nexium and Oxycodein for the pain. Nothing has helped me determine the source of this pain. I am reaching out to this community to see is anyone has a similar experience.

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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I forgot,@nicoleny, I was tested for Celiac, and it was negative. But I read that if it is not done just so, the results can be a false negative.

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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@mamacita Thank you SO MUCH. Yes, my pain is mostly in one spot as well. I agree with the possibility of how our food is sprayed with chemicals, it's terrible. It's difficult for me to go gluten free as I am a vegetarian but it is not impossible and most definitely worth a try. I don't really get swelling or spasms. It's more like a gnawing pain that gets better and worse. I am thinking of calling Mayo Clinic. I did have an appointment with them about a year ago but did cancel it. It's just a little difficult in the way they schedule over a course of a few days, to arrange with work/flights, etc. It is worth looking into again. I really appreciate your feedback.

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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Hi @nicoleny! Do you remember the 4 criteria boxes you checked for chronic pancreatitis? I can only tell you that my pain early in my journey was usually at my sternum where indigestion appears, but it was indigestion times 100. It would also radiate into my back. If the pancreas is the cause, the only thing that will just take the edge off the pain is heavy duty narcotics. The only thing I have ever been prescribed that truly relieved the pain is Marinol (synthetic cannabis). It was prescribed to enhance my appetite after several abdominal surgeries and I was not eating enough to heal properly. It was effective for appetite, but also a great pain reliever and sleep aid. Unfortunately, it can now be prescribed in SC for a terminal illness that results in unrelenting pain, such as cancer. After more than a decade of chronic pancreatitis, losing about a third of it to a pancreatic tumor (benign) along with my spleen and a couple of other abdominal surgeries, about 20 ERCP's, etc..., my pain may be anywhere in my abdomen and into my back. Still, when it is most severe, it is where you describe, beneath my left ribcage and into my back.

I don't know if this is helpful or not, but please ask any questions and I will attempt to answer or point you in the right direction.

Blessings and health,
Gary

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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@gman007 Thank you so much for your reply. I don't remember offhand what the four were offhand, I remember one was hyperchoic foci or something along those lines. I had a pancreatic function test done by one of the top pancreas specialists in the world and he really felt that it was not my pancreas, despite the findings on the EUS. My pancreatic function test was normal. The EUS is the only test that showed a few abnormalities. I am able to sleep. Some days I have no pain, some days I am laid out on the bed with my heating pad, running to the bathroom every so often. I don't really ever experience nausea and have never thrown up from it. But yes, the pain is right where you described it. I guess Mayo would be my next step but it's just difficult getting there for me.

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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I get that. We have some excellent pancreatic docs at our states medical university and my GI sent me there when I was considering Mayo and Johns Hopkins. I don't know how they rank nationally as a group, but I have great confidence in them. It is about a 3 1/2 hour drive from my home and, with my wife driving, we can leave home at 5:30, get there, have an ERCP performed to place a stent or use a ballon to remove stones, etc... and be home by about 6PM. Tough for my wife as she usually has to be back at school the following morning, but it is doable. I hope you can get somewhere you are confident in for a team approach to a diagnosis and then some relief.
Gary

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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@gman007 Gary - just out of curiosity, which medical university did you go to? Thank you so much for your reply and all of your input. I hope today is a good day for you 🙂

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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The Medical University of SC. It is in Charleston, SC. In the past few years another hospital system in the upstate has begun teaching, but it will be some time before they are likely to have docs who have/are performing high volumes of pancreatic procedures and I would not go anywhere if that is not true. Don't wish to be practiced on.

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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@mamacita That is interesting. Do you know how this is done - blood test, etc.?

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@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I'm on a new journey for chronic pancreatitis that has taken over my life. I'm thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don't give up

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I love MUSC in Charleston! After going to Mayo GI for years and no explanation for my severe pain, my internist sent me to MUSC , along with all my records from Mayo. Turns out one of the early tests was abnormal, but not acted on. I was diagnosed with MALS and had surgery there. Very impressed with GI surgery there as well as vascular surgery.

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My husband is experiencing the same issues but his pain is on the right side and center. Every test done as you mentioned and although they've seen inflammation and an abscess they diminish after being on antibiotics. They sent him home with an oral antibiotic script and then inevitably it comes back again. He was recently hospitalized because he had c-diff due to all of the antibiotics that they have been pumping into him. He has been to the emergency room four times since May 30th and is now on his third hospitalization. If anybody has any information that can help us that would be appreciated. The hospital that we are going to is a big hospital with a great team of Physicians but they cannot provide us the answers that we need. And we can't keep living like this.

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