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.

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

@hopeful33250

@carolel

I am sorry to hear of your chronic pain. Your concern is certainly understandable. Have you discussed this with the surgeon who performed the laparoscopic cholecystectomy in 2002?

Please remember that it is always your right to get a second opinion.

Teresa

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I have since investigated this and it appears that he is now practicing in Sydney, Australia. To be honest, when I was an inpatient and leading up to being admitted, I was seen by about 11-12 different doctors, and I can only recall seeing one more than on one occasion

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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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Did the ERCP's give you a pancreas attack? Were you diagnosed after EUS? What does it show if you have chronic pancreatitis?

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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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Apparently the ERCP showed a slightly inflamed pancreas but the blood results indicated that it couldn’t be pancreatitis

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@carolel

What an interesting turn of events. Even though the hospital has been demolished and the doctor is no longer in the country, I feel sure that the hospital records do exist somewhere. It might take some time to track them down, though.

In the meantime, however, are you interested in getting a second opinion at a research facility like Mayo? They have three facilities, Minnesota, Florida and Arizona. Here is how you can call for an appointment, https://www.mayoclinic.org/appointments/

I look forward to hearing how you resolve this situation. Will you post again?

Teresa

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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 @carolel
I am a volunteer mentor, but have been on a sort of sabbatical for the summer months. This thread appears to have started about 6 years ago, so I am gonna respond to your recent post and if anyone else would like to ask questions, I will respond. I have carried a diagnosis of chronic pancreatitis since 2006. I was hospitalized with acute pancreatitis three times for a total of 30 days that year and had many tests, a gall bladder removal and scans later in the year showed calcification and scarring of my pancreas and a continuous level of pancreatic inflammation. The main reason I am replying to your post is that elevated pancreatic enzymes in the blood are not always present in pancreatitis. My pancreas had been damaged to the point that it was unable to produce enzymes in large enough quantities, after the third attack, to be revealed on a blood test. My youngest son either inherited the problem from me or we are just an unlucky family as he has had two acute attacks. With his most recent, his lipase was very elevated, but his amylase was only slightly above normal. My point is, there are other ways to evaluate your pancreas and that should be done. If it is not related to your pancreas, I would consider that a blessing, but I would not know which direction to point you in if it is not.
Blessings and better health,
Gary

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@hopeful33250

@carolel

What an interesting turn of events. Even though the hospital has been demolished and the doctor is no longer in the country, I feel sure that the hospital records do exist somewhere. It might take some time to track them down, though.

In the meantime, however, are you interested in getting a second opinion at a research facility like Mayo? They have three facilities, Minnesota, Florida and Arizona. Here is how you can call for an appointment, https://www.mayoclinic.org/appointments/

I look forward to hearing how you resolve this situation. Will you post again?

Teresa

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Thank you for your offer but that would be impossible for me for many different reasons which I would rather not discuss but I will keep you informed of my situation. The next step is an appointment I have with the gastroenterologist in September

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@carolel I certainly hope that you are able to get some more help and information from this appointment in September!

Teresa

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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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Hey Gary,
Thank you for your reply. When I was first hospitalised one consultant diagnosed pancreatitis and I started treatment with IV antibiotics but after 1 day’s treatment I was seen by a surgical, either ho or registrar, who stopped all treatment. As a result of your reply, I am now wondering if the course of antibiotics had been completed, it might have at least treated the problem initially or completely. Believe it or not, I was a nurse for many years, initially in paediatrics and later in adult colo-rectal, but I have been medically retired since 2006 because of mental illness. Sometimes,recently, I have wondered if possibly, the medics won’t take me seriously because of this and maybe think I’m hysterical. I don’t recall any similar case in all my years of nursing.
My next port of call is a follow up with the gastroenterologist in September. I’ve only met her once but she did give me the impression, mistakenly or not I don’t know, that she would maybe be prepared to listen, but as she only has a clinic twice a year I have to wait six months to speak to her. The bloods she ordered were ‘normal ‘ but I haven’t had the results of the stool test.
At least, since speaking to some fellow sufferers on this site, I will be able to face her armed with plenty of pertinent questions so thank you again for sharing your experiences with me,

God bless,
Carole

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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 Carol @carolel and you are very welcome. I have some psych issues as well, but mine have become acute during my years of opioid treatment for the pain caused by pancreatitis. I have had GAD (general anxiety disorder) for most of my adult life, but the pain and treatment for it have led to major depressive disorder. I am getting some very good treatment with a new psychiatrist and some genetic testing she requested, so I am coping much better. The physical side of things is not good and it is just a result of the progression of the diseased pancreas. I battle pain, nausea, diabetes, and a weakened immune system daily and it is unlikely to improve. I am not whining as I am aware on a daily basis of the fact that my list of blessings is much longer than my problems, but I am realistic about those. I do much better by accepting what the disease does over time as opposed to always wanting a "cure".

Of course, you can not even get a diagnosis and that has to be incredibly frustrating. If your GI does not believe you have pancreatic issues, I would look for a high volume center for a pancreatic specialist. It would be very difficult for me to get to Mayo, but the Medical University Hospital in my state is a high volume center for things like ERCP's and pancreatic surgery. You really want someone who does the procedure many times in a given day or week as opposed to 6 per year. Your GI can probably point you in that direction. Please don't hesitate to ask any question and I will attempt to answer if I have experienced the situation.
You have my prayers for an answer, Gary

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