Guest guest Posted September 6, 2009 Report Share Posted September 6, 2009 Ahhhh, now I see that there is a special group for pancreatitis?? I had not been able to locate one. Jodi is this the one where they talk mainly about taking medicine? I just cannot be the only seriously pancreas-impaired person who is treating myself by a special diet rather than the pain medication that some people around me were recommending when I had my last bad attack. If my system cannot absorb or metabolize many foods, why would I believe that it could absorb and distribute oral medication? I am not ready for IVs! I will look into that list, since I seem to unwittingly post out of bounds here. ;-) Ann > > Jodi > > Not to worry you too much, but the people in the SOD/CP group I'm in who have more of the chronic pancreatitis issue than the SOD issue, tend to need pain management 24/7. Reading all their emails has made me feel extremely lucky to only experience pain after I eat, and being on SCD has helped me keep that RUQ and back pain minimal most of the time. From what I have read, pancreas malfunctions are very painful. > > By the way, the few people in that group who have needed their pancreas removed completely report that they do so much better afterwards, that their pain levels disappear after recovery from the surgery. > > The only question I can think of would be whether you might need an EUS and/or ERCP and/or MRCP-S to better assess the state of your pancreas and Sphincter of Oddi and bile ducts. If your doctor suggests an EUS or ERCP, make sure that whomever performs the procedure is very experienced, particularly with pancreatic issues. > > My gastroenterologist is an ERCP specialist, performed hundreds if not thousands of the procedure. But he won't go into the pancreatic duct; he sends his patients that need that kind of examination to a pancreatic specialist in Indiana or Minnesota. > > Glad the pineapple juice and lemon juice are helping. > > Will be thinking of you tomorrow at your doctor's office. Hope all goes well, and you get some helpful suggestions and options. > > Kim M. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2009 Report Share Posted September 7, 2009 Ann There is a Yahoo group for chronic pancreatitis and acute pancreatitis sufferers, and those with Sphincter of Oddi dysfunction. As Jodi reports, most aren't too interested in SCD although most do have to pay attention to diet to some degree. Most use pancreatic enzymes; most are on pain management regimens. The group owner is a nurse, as are many in the group, so the information can get technical. Which can be helpful at times, especially when making sense of test results. I joined the group two years ago, but admit I don't read the posts too regularly these days. I found a lot of helpful information in the group files. Many doctors aren't too knowledgeable about pancreas issues, or Sphincter of Oddi dysfunction, so it does help to share information in this specialized group. There are several in the group who are also dealing with neurological deterioration as I am, which helps. Still, I prefer to work hard at finding the right foods to eat to keep the chronic symptoms minimal and not need pain or nausea management 24/7. SCD has helped me figure all that out, thank goodness. I can't eat all the permitted foods, of course. But I do well. By the way, I have a similar issue with oral meds. Kim M. SCD 5+ years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2009 Report Share Posted September 7, 2009 Ann There is a Yahoo group for chronic pancreatitis and acute pancreatitis sufferers, and those with Sphincter of Oddi dysfunction. As Jodi reports, most aren't too interested in SCD although most do have to pay attention to diet to some degree. Most use pancreatic enzymes; most are on pain management regimens. The group owner is a nurse, as are many in the group, so the information can get technical. Which can be helpful at times, especially when making sense of test results. I joined the group two years ago, but admit I don't read the posts too regularly these days. I found a lot of helpful information in the group files. Many doctors aren't too knowledgeable about pancreas issues, or Sphincter of Oddi dysfunction, so it does help to share information in this specialized group. There are several in the group who are also dealing with neurological deterioration as I am, which helps. Still, I prefer to work hard at finding the right foods to eat to keep the chronic symptoms minimal and not need pain or nausea management 24/7. SCD has helped me figure all that out, thank goodness. I can't eat all the permitted foods, of course. But I do well. By the way, I have a similar issue with oral meds. Kim M. SCD 5+ years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2009 Report Share Posted September 7, 2009 Ann There is a Yahoo group for chronic pancreatitis and acute pancreatitis sufferers, and those with Sphincter of Oddi dysfunction. As Jodi reports, most aren't too interested in SCD although most do have to pay attention to diet to some degree. Most use pancreatic enzymes; most are on pain management regimens. The group owner is a nurse, as are many in the group, so the information can get technical. Which can be helpful at times, especially when making sense of test results. I joined the group two years ago, but admit I don't read the posts too regularly these days. I found a lot of helpful information in the group files. Many doctors aren't too knowledgeable about pancreas issues, or Sphincter of Oddi dysfunction, so it does help to share information in this specialized group. There are several in the group who are also dealing with neurological deterioration as I am, which helps. Still, I prefer to work hard at finding the right foods to eat to keep the chronic symptoms minimal and not need pain or nausea management 24/7. SCD has helped me figure all that out, thank goodness. I can't eat all the permitted foods, of course. But I do well. By the way, I have a similar issue with oral meds. Kim M. SCD 5+ years Quote Link to comment Share on other sites More sharing options...
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