QUESTION FOR RNY'S OR ERNY'S
Hi Margaret:
Your situation sounds just like mine...My blood work came back and my Lipase levels were normal but my liver functions were abnormal and highly elevated...phosph/alka...alt...ast
I don't really know what all that means but they say my liver is inflamed...They had me immediately come in for an MRCP...Which is an MRI basically and I hope to find out the results today some time on that...
My pain is just like yours...Begins in the upper middle to right quadrant of the abdomen and radiates into the back...I do feel nausea if it's a strong attack and I have thrown up as well as a matter of fact when I throw up the pain seems to go away more quickly...
Some of the things I've found online that are indicative of our symptoms is called Sphincter of Oddi...which is a muscle that controls the bile going into the bile duct and pancreas duct...I see don't have a gallbladder, did these attacks start after they removed it?...I don't have mine and haven't for 20 years but I began these attacks about a month after they removed it which is also indicative of Sphincter of Oddi...Look it up on the internet there is tons of information about it..
Good Luck to you Margaret.
Janie
Your situation sounds just like mine...My blood work came back and my Lipase levels were normal but my liver functions were abnormal and highly elevated...phosph/alka...alt...ast
I don't really know what all that means but they say my liver is inflamed...They had me immediately come in for an MRCP...Which is an MRI basically and I hope to find out the results today some time on that...
My pain is just like yours...Begins in the upper middle to right quadrant of the abdomen and radiates into the back...I do feel nausea if it's a strong attack and I have thrown up as well as a matter of fact when I throw up the pain seems to go away more quickly...
Some of the things I've found online that are indicative of our symptoms is called Sphincter of Oddi...which is a muscle that controls the bile going into the bile duct and pancreas duct...I see don't have a gallbladder, did these attacks start after they removed it?...I don't have mine and haven't for 20 years but I began these attacks about a month after they removed it which is also indicative of Sphincter of Oddi...Look it up on the internet there is tons of information about it..
Good Luck to you Margaret.
Janie
Hi there
Just wanted you to know that my daughter had sphincter of oddi. Had surgery to fix it. This happened after gallbladder was removed. She still had pain so we did more investigating. When they cut that sphincter muscle, stone and gravel fell out. This is what the problem was. It was very interesting!
Lori
Just wanted you to know that my daughter had sphincter of oddi. Had surgery to fix it. This happened after gallbladder was removed. She still had pain so we did more investigating. When they cut that sphincter muscle, stone and gravel fell out. This is what the problem was. It was very interesting!
Lori
Hi Lorie:
Thank you for sharing this...I have felt for several weeks that SOD is my problem but believe it or not many Dr.'s are not real familiar with the Dysfunction and don't recognize it as a true problem...Your story here tells me it's for real...
I believe there are many of us out here that have experienced real upper right abdominal pain for years because they can't find what's trully wrong with us...I believe my Dr. is finally taking notice and going to do something other than send me home with a bottle of Prevacid...
Did your daughter have RNY? So did she have 2 surgeries to fix the SOD? How long did her attacks of pain last ea*****ident? Did she have nausea and vomiting with it as well...I never had any pain like this until I had my gallbladder out when I had my RNY Revision from a stapling...and the attacks only hit me about 4 times a year...But after I had my last surgery in May I began having more frequent attacks and now they come about once a week...
What tests did they give your daughter that made them think SOD? Did she have elevated liver abnormalities? Or Amylase or Lipase elevations?
Just trying to see if her case is similar to my own...Thanks again for this information...it is so interesting but it will be so good to have it taken care of...
How are you doing by the way?
Janie
Thank you for sharing this...I have felt for several weeks that SOD is my problem but believe it or not many Dr.'s are not real familiar with the Dysfunction and don't recognize it as a true problem...Your story here tells me it's for real...
I believe there are many of us out here that have experienced real upper right abdominal pain for years because they can't find what's trully wrong with us...I believe my Dr. is finally taking notice and going to do something other than send me home with a bottle of Prevacid...
Did your daughter have RNY? So did she have 2 surgeries to fix the SOD? How long did her attacks of pain last ea*****ident? Did she have nausea and vomiting with it as well...I never had any pain like this until I had my gallbladder out when I had my RNY Revision from a stapling...and the attacks only hit me about 4 times a year...But after I had my last surgery in May I began having more frequent attacks and now they come about once a week...
What tests did they give your daughter that made them think SOD? Did she have elevated liver abnormalities? Or Amylase or Lipase elevations?
Just trying to see if her case is similar to my own...Thanks again for this information...it is so interesting but it will be so good to have it taken care of...
How are you doing by the way?
Janie
Hi Janie;
If you don't mind let me know what you find out about your test. I hope that they can find out what is wrong and can correct the problem.
My pain begins in the upper middle to left quadrant of the abdomen and radiates into the back. I had my gallbladder taken out about 10 years ago. The pain that I am having now started about 1 year after my gastric by-pass surgery.
Our symptoms are so much alike that I know it is not just in our heads. There is some thing that is going on. Hopefully the doctors will figure out what is wrong!
Don't forget to let me know about your test result.
GOD BLESS
Margaret
If you don't mind let me know what you find out about your test. I hope that they can find out what is wrong and can correct the problem.
My pain begins in the upper middle to left quadrant of the abdomen and radiates into the back. I had my gallbladder taken out about 10 years ago. The pain that I am having now started about 1 year after my gastric by-pass surgery.
Our symptoms are so much alike that I know it is not just in our heads. There is some thing that is going on. Hopefully the doctors will figure out what is wrong!
Don't forget to let me know about your test result.
GOD BLESS
Margaret
Hi Margaret:
I received the results from the MRI and they said they didn't find anything out of order...The liver and kidneys all look healthy...They didn't see any stones, tumors/cysts or scarring that would block the ducts...But they did say that pain is a sign of problems and they felt that it may be a sphincter of oddi....just as I had researched and felt before I ever had the test...The 15-30 minute pain upper middle abdomen radiating to the back is definately a sign...There could have been a small stone, very small that blocks that opening but then the stone moves through and the pain stops and by the way I just found out that you can have stones even after you lose your gallbladder...That is something I wasn't sure of...
So my Dr. wants to refer me to a gastroenterologist who specializes in biliary diseases and hopefully we can get to the bottom of it...There is only one cure and it's not 100% for Sphincter of Oddi and that is ERCP or Open Surgery where they go in and cut that muscle sometimes that works or makes it better sometimes not...
As a word of caution...there are many Dr.'s who don't recognize SOD (Sphincter of Oddi) as a real illness...they just ignore that it trully is a disorder...so don't take no for an answer after all the tests are done and they say you just have "IBS" because that is what many of them do...they lay everything off on "IBS" if they can't actually see or determine what you have...
So we'll see...
Keep me informed on you as well...
Janie
I received the results from the MRI and they said they didn't find anything out of order...The liver and kidneys all look healthy...They didn't see any stones, tumors/cysts or scarring that would block the ducts...But they did say that pain is a sign of problems and they felt that it may be a sphincter of oddi....just as I had researched and felt before I ever had the test...The 15-30 minute pain upper middle abdomen radiating to the back is definately a sign...There could have been a small stone, very small that blocks that opening but then the stone moves through and the pain stops and by the way I just found out that you can have stones even after you lose your gallbladder...That is something I wasn't sure of...
So my Dr. wants to refer me to a gastroenterologist who specializes in biliary diseases and hopefully we can get to the bottom of it...There is only one cure and it's not 100% for Sphincter of Oddi and that is ERCP or Open Surgery where they go in and cut that muscle sometimes that works or makes it better sometimes not...
As a word of caution...there are many Dr.'s who don't recognize SOD (Sphincter of Oddi) as a real illness...they just ignore that it trully is a disorder...so don't take no for an answer after all the tests are done and they say you just have "IBS" because that is what many of them do...they lay everything off on "IBS" if they can't actually see or determine what you have...
So we'll see...
Keep me informed on you as well...
Janie
Hi Janie;
I am glad that your liver and kidneys look healthy. I had looked up on the computer about the sphincter of oddi like you had suggested and the symptoms are like ours. Do you know how they determine that it is sphincter of oddi before they decide to do surgery?
The hospital called me today and said that my CT SCAN is setup for Tuesday morning. I had read somewhere that for sphincter of oddi that a MRI is better than a CT SCAN. Have you heard anything about that?
Keep intouch...
GOD BLESS
Margaret
I am glad that your liver and kidneys look healthy. I had looked up on the computer about the sphincter of oddi like you had suggested and the symptoms are like ours. Do you know how they determine that it is sphincter of oddi before they decide to do surgery?
The hospital called me today and said that my CT SCAN is setup for Tuesday morning. I had read somewhere that for sphincter of oddi that a MRI is better than a CT SCAN. Have you heard anything about that?
Keep intouch...
GOD BLESS
Margaret
Hi Janie:
I hope you had a wonderful trip!!!!
I had my CT SCAN done and it was normal. I am suppost to go back to my family physician the end of December. I have an appointment with the doctor that did my gastric by pass surgery next week for my yearly check-up. They told me to bring copies of the reports of the EGD and CT SCAN when I come. I don't know what is next.
Keep intouch and let me know how things are going with you and I will do the same.
GOD BLESS
Margaret
I hope you had a wonderful trip!!!!
I had my CT SCAN done and it was normal. I am suppost to go back to my family physician the end of December. I have an appointment with the doctor that did my gastric by pass surgery next week for my yearly check-up. They told me to bring copies of the reports of the EGD and CT SCAN when I come. I don't know what is next.
Keep intouch and let me know how things are going with you and I will do the same.
GOD BLESS
Margaret
I don,t know if I can help,I have not had surgery yet. I had pancreatitis I felt like I was not going to make it thru the night back in April. I spent a 2 days in icu, and about another 8 day,s in the hospital. Your right you will puke like no tomarrow, and your guts, feel like someone trying to ring them out, I be strait up honest, having labor pain was a walk in the park ! My sugar levels were 898 and my triglyceride, were supose to be between 60-160 and mine were 793. after they worked hard on me, the 1st night they told my husband,that I might not make it. If you have pancreatitis, they would not let me eat for 4 day,s and I got ice chips first,and darn few the first day I was aloud was day 3, day 4 I was on a limited liquid diet for a few more days, then a fat free diet. If you have this problem with your pancreatitis, I truely feel for you, I know the hell your induring, i would not wish this on anyone.
Hi Rebecca:
I so appreciate your response...Did you have several pain attacks prior to your attack in April?
Are they planning on doing surgery on you? Do you know if they think the way your RNY was done had anything to do with the pancreatitis? How have you been since your hospital visit back in April have you had anymore attacks? Did they give you pain meds to help the pain?
I'm sorry so many questions but I'm beginning to have these pain attacks once a day and they last from 30 minutes to an hour and most of what I have read on the illness states that when having an attack they can last for days...So were still not sure if that is what I have but I'm telling you the way people describe the pain it sounds just like what I have...Also the CT Scan I had showed that one of my bile ducts was enlarged which was a little unusual but yet I don't have a gallbladder...
Anything else you could share with us about this horrible illness would be so much appreciated...
Thank you.
J Rolfson
I so appreciate your response...Did you have several pain attacks prior to your attack in April?
Are they planning on doing surgery on you? Do you know if they think the way your RNY was done had anything to do with the pancreatitis? How have you been since your hospital visit back in April have you had anymore attacks? Did they give you pain meds to help the pain?
I'm sorry so many questions but I'm beginning to have these pain attacks once a day and they last from 30 minutes to an hour and most of what I have read on the illness states that when having an attack they can last for days...So were still not sure if that is what I have but I'm telling you the way people describe the pain it sounds just like what I have...Also the CT Scan I had showed that one of my bile ducts was enlarged which was a little unusual but yet I don't have a gallbladder...
Anything else you could share with us about this horrible illness would be so much appreciated...
Thank you.
J Rolfson
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