Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Hi everyone, Andre' I take ultrase mt 20's five with meals. I went to my first doctors visit with my new doc at Beth Israel Medical center. The doc told me that I did not have chronic pancreatitis even though my enzyme levels are up. I just malaborb due to my pancreas and CF. I am very discouraged because he says he would not change my treatment (just enzymes). I do not have pain all the time but I do have tenderness under my left rib and nausea all the time. He couldn's explain the nausea saying that it might me from malabsorption of fats. I have cystic fibrosis so I have to stay on a somewhat fatty system to maintain a medium nutritional value for my body. He told me to have six small meals a day and see if that helps. I have never had a ct scan or MRCP or ultrasound done to see what is going on. He says he is the best around(it is a pancreas center) and that there is really nothing he can do. He wouldn't even give me nausea meds. I am so confused and worried. I cannot live nausea for the rest of my life. He says my pancreas is not working properly but it is not chronic pancreatitis because I do not have pain all the time. He said if I had chronic pancreatitis I would have pain all the time. Is this true? I thought if you had slightly high levels of enzymes that it was chronic pancreatitis. Why then am I always nauseous? What do I do? Can anyone help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 In a message dated 02/08/2000 9:06:27 PM Central Standard Time, User441933@... writes: << He says he is the best around(it is a pancreas center) and that there is really nothing he can do. He wouldn't even give me nausea meds. I am so confused and worried. I cannot live nausea for the rest of my life. >> they all say that...if they're not trying to find out what's wrong and making you comfortable in the interim then i'd say they're not doing their best..,in my opinion!! Lynn :0) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 In a message dated 2/8/00 9:03:06 PM Pacific Standard Time, thrasher@... writes: << I also have pain in my left side. That is where almost all of my pain is - when I have pain. >> Hi , I'm glad that someone else also has the ULQ pain. That is where the majority of my pain has been, except during an attack. These last two weeks it has been really nagging. I haven't been able to get any relief until yesterday when my increased my Phent. patch. My other GI Doc. said it's pancreas tail pain. I don't care what part of the pancreas it is anymore, when it hurts it hurts. This GI Doc said it could be my Crohn's. Then I'm often asked if I can distinguish the 2 apart. Anymore abd. pain is abd pain. My flare-ups after eating can be either the pancreatitis or the Crohn's. I get double over pain, nausea, diarrhea, not often vomiting. The only way for me to know it's the pancreatitis is the ULQ pain that lingers after the attack, this way I know it's the pancreas. I then want to see my enzymes, if their up this is the indicator. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Hi, ! I am always suspicious of people who claim to be the best there is. I would be doubly suspicious if they said that but couldn't help me! I also have pain in my left side. That is where almost all of my pain is - when I have pain. I have been diagnosed with chronic pancreatitis but don't have constant pain. Sometimes I can go weeks without pain. Maybe you should see another doctor. I just hate it when they act like the end-all, be-all of medicine and then don't give you any relief! Best of luck! User441933@... wrote: > > From: User441933@... > > Hi everyone, > > Andre' I take ultrase mt 20's five with meals. I went to my first > doctors visit with my new doc at Beth Israel Medical center. The doc told me > that I did not have chronic pancreatitis even though my enzyme levels are > up. I just malaborb due to my pancreas and CF. I am very discouraged > because he says he would not change my treatment (just enzymes). I do not have > pain all the time but I do have tenderness under my left rib and nausea all > the time. He couldn's explain the nausea saying that it might me from > malabsorption of fats. I have cystic fibrosis so I have to stay on a > somewhat fatty system to maintain a medium nutritional value for my > body. He told me to have six small meals a day and see if that helps. I have > never had a ct scan or MRCP or ultrasound done to see what is going on. He > says he is the best around(it is a pancreas center) and that there is really > nothing he can do. He wouldn't even give me nausea meds. I am so confused > and worried. I cannot live nausea for the rest of my life. He says my > pancreas is not working properly but it is not chronic pancreatitis because I > do not have pain all the time. He said if I had chronic pancreatitis I would > have pain all the time. Is this true? I thought if you had slightly high > levels of enzymes that it was chronic pancreatitis. Why then am I always > nauseous? > What do I do? Can anyone help? > > > ---------------------------------------------------------------------- > [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 , Run do not walk to get a second opinion. Some of these doc's have attitude and that seems to get in the way of competent medicine. I work with surgeons everyday. There are very good Doctors out there and there are some really arrogant souls. These guys should not be doctors. If he made you feel at all uncomfortable with his manner or if you think for a second he may be wrong. Please get a second opinion. Dodie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 It must be very hard and confusing to have two diseases with somewhat similar symptoms. I don't envy you that... I sometimes have no pain, I sometimes have very sharp pain and sometimes I have that " nagging " pain that you mention. My " nagging " pain is the kind that seems to be low-grade pain that seems to really bother me when I take deep breaths, bend over to the left, cough or sneeze. To me, it feels like my pancreas is swollen... Is that the same kind you get? I'm very happy to hear your port-a-cath is helping you! I know it's a relief! DCP6364@... wrote: > > From: DCP6364@... > > In a message dated 2/8/00 9:03:06 PM Pacific Standard Time, > thrasher@... writes: > > << I also have pain in my left side. That is where almost all of my > pain > is - when I have pain. >> > > Hi , > I'm glad that someone else also has the ULQ pain. That is where the > majority > of my pain has been, except during an attack. These last two weeks it > has > been really nagging. I haven't been able to get any relief until > yesterday > when my increased my Phent. patch. My other GI Doc. said it's > pancreas tail > pain. I don't care what part of the pancreas it is anymore, when it > hurts it > hurts. This GI Doc said it could be my Crohn's. Then I'm often asked > if I > can distinguish the 2 apart. Anymore abd. pain is abd pain. My > flare-ups > after eating can be either the pancreatitis or the Crohn's. I get > double > over pain, nausea, diarrhea, not often vomiting. The only way for me > to know > it's the pancreatitis is the ULQ pain that lingers after the attack, > this way > I know it's the pancreas. I then want to see my enzymes, if their up > this is > the indicator. > > Marie > ---------------------------------------------------------------------- > [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 , Is this the only doctors in your area familiar with pancreatitis? Don't just take the word of your physician. They all seem to get this " God Complex " at some part and declare that they are the " best " around. I am concerned, however, that you never were given an MRCP, CAT Scan, ERCP, or any other diagnostic tool used to determine pancreatitis. Pancreatitis is an unusual disease. Where I may have it and have continual pain, you may only experience intermittent bouts of pain. On the other hand, someone else with the same condition may go through his/her entire life and never have one moment of pain. Pain is not the sole diagnostic factor in determining pancreatitis. As a matter of fact, in my particular case, while I was having unbearable pain constantly, my enzymes levels remained normal. This caused me a tremendous amount of grief in finding a doctor who still believed I was experiencing the pain that I knew that I had. One thing you must remember, these doctors are good at making you believe in them so much that we sometimes stop believing in ourselves. As good as any doctor can ever be, he can never truly know what you are feeling. The best he can do at any given time is surmise. Remember this the next time your doctor tells you he is the " best around. " Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 In a message dated 2/9/00 8:25:05 AM Pacific Standard Time, thrasher@... writes: << Is that the same kind you get? >> Hi , I get the horrible pain in the upper abd. area under the sternum. It is a deep pain, almost stabbing. This is the [pain that knocks my socks off after having an ERCP. The other pain is the upper right pain. It is so nagging after a while it does hurt more intense. I have been having a lot of pain today around the umbilical area. Any suggestions? The Fentanyl patch is awesome for my pain relief though. I'm sorry about the misspelling of these. For the longest I was spelling it with a PH. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 In a message dated 2/9/2000 8:39:38 PM Eastern Standard Time, DCP6364@... writes: << << Is that the same kind you get? >> >> Marie and all, I too suffer with pain under the sternum dead center. It feels as if it's a crushing pain that I experience whenever I eat anything. I also have left quadrant pain constantly that radiate to the back. I'm glad to hear the fentenayl patch worked for you. I was placing 200 ml (I think that's their measurement units) along with the MS Contin. While I did have complete pain relief (I still had nagging discomfort but nothing like the pain I have now), I began to worry about addiction so I weaned myself off of them. The docs at my pain clinic want to place me on them again but without the aid of the MS Contin I take now. They want to discontinue this drug and go strictly with the Duragesic Patches. I worry because they have been having to decrease my pain meds to equal the dosage they plan on using of the patches. I'm afraid that it won't be sufficient to allow me to keep the minimal quality of life I currently have, let alone allow me to return back to work full-time. I am glad the patches are giving you some much needed relief. We should all be allowed to take whatever works for us, regardless of the type or dosage required. Who the hell cares about addiction at this stage in my life? Andre' Quote Link to comment Share on other sites More sharing options...
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