Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 > I'm asking for opinions on where to go from here with my stomach > pain. I'll try to make this brief, but not sure this is possible. > > My story began in January of this year. I was fine one minute and > doubled over in pain and vomiting the next. A trip to the ER > revealed classic acute pancreatitis. Elevated Amylase, AST, ALT, > Bilirubin, and White blood count. I was hospitalized and sent home 3 > days later and told to avoid greasy foods. By the way, my > gallbladder was removed 1 1/2 years prior. To make a long story > short, I have suffered with pain and nausea off and on since > January. Pain ranges from none at all to the worst pain imaginable. > Right now it is simply a dull ache under my right rib, around the > side and through to my back. I don't have nausea all that often > anymore. I had an ERCP in February which revealed a constricted bile > duct, but no stones. The doctor performed a papillotomy during the > ERCP. He told me the bile duct was constricted but that he had made > a small cut in it so I would now be fine. I spent 5 days in the > hospital after the ERCP because I had severe pain. My Amylase was > normal-113, but the AST and ALT were elevated. Also, my white blood > count, red blood count, HCT and hemoglobin were low. > > Other than the initial attack in January, my Amylase has been normal > (or slightly low) every time it's been checked. My lipase was > checked once in March and was normal. I had abdominal x-rays, ct > scan, and small bowel follow through in March and all were normal. > An ultrasound in March revealed mild dilation (5 mm)of the common > bile duct. > > Most recent bout of pain and vomiting was on July 5th. I ended up in > the ER. Again the Amylase was normal (42 on July 5th and 40 on July > 6th). Lipase on July 6th was low - it was 0. My red blood count, > hemoglobin, and hematocrit were also low. This time, my stomach > swelled to the point of looking like I was 8 months pregnant and was > hard as a rock. The swelling didn't start until a couple of days > after the attack. I saw my gastro on July 10th. I had gained 21 > pounds in less than 3 weeks and my stomach was huge. Gastro said > there was nothing wrong with my pancreas since Amylase and Lipase > were not elevated. He said pain is probably from spasms in my bile > duct caused by eating rich foods. He said the weight gain was from > my diet and my stomach didn't look swollen or feel hard to him. He > said I simply have irritable bowel syndrome and was so tired I felt > as though I couldn't go on because I was depressed over the stress in > my life. I told him my life is now wonderful and the only thing > causing me stress was that I felt like shit! The gastro did schedule > a CT scan which revealed nothing. I woke up on July 14th and the > swelling in my stomach was almost gone and my pain was back to a dull > ache. I felt wonderful! The next few days were great - very little > pain and I actually had energy! I weighed on July 17th - exactly one > week after seeing the gastro and I had dropped 14 pounds - guess my > depression lifted (hah!). It's now July 19th and my energy level is > once again going down. I'm back to the constant dull ache and am > also having intermittent burning pains in my stomach under my right > rib. > > I've made an appointment with a different gastro. There may be > nothing wrong with my pancreas - but something caused me to gain 21 > pounds in less than 3 weeks and then lose 14 pounds in a week. > Something is causing this pain in my gut and I want to know what it > is. > > Any opinions, suggestions, or words of wisdom will be greatly > appreciated. > > , It sounds like you may have chronic pancreatitis. You can have attacks of pancreatitis without your lipase & amylase going high. I do the very same thing & have the very same pain you desribed under your right breast & shoulder blade. Iv'e suffered with this for 5 years & each attack drains me more. My last severe attack was in March of this year and I spent 1 month in the hospital. You need a really good GI doc & a pain management clinic to help you. I also gained the weight & looked 8 months pregnant. Most people have problems with loosing weight & not able to put it on. I am just the opposite. I have been on a low fat diet for 4 years. I think the weight gain is from taking so much enzymes. I had a radiofrequency nurolysis done on June 23rd & I haven't had the pain under my breast & shoulder. What a relief that is!!!! But I really suggest you find a GI doc with a lot of pancreatitis experience. I went thru 3 different Groups before I found the one I'm with now. He has helped me a lot!..The 2nd group I was with said I did'nt have pancreatitis it was lupus. I had GOLD treatments for that. I DON " T HAVE LUPUS AT ALL. This is a very frustrating disease & it takes a doc with lots of experience. Where do you Live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 > > I'm asking for opinions on where to go from here with my stomach > > pain. I'll try to make this brief, but not sure this is possible. > > > > My story began in January of this year. I was fine one minute and > > doubled over in pain and vomiting the next. A trip to the ER > > revealed classic acute pancreatitis. Elevated Amylase, AST, ALT, > > Bilirubin, and White blood count. I was hospitalized and sent home > 3 > > days later and told to avoid greasy foods. By the way, my > > gallbladder was removed 1 1/2 years prior. To make a long story > > short, I have suffered with pain and nausea off and on since > > January. Pain ranges from none at all to the worst pain > imaginable. > > Right now it is simply a dull ache under my right rib, around the > > side and through to my back. I don't have nausea all that often > > anymore. I had an ERCP in February which revealed a constricted > bile > > duct, but no stones. The doctor performed a papillotomy during the > > ERCP. He told me the bile duct was constricted but that he had > made > > a small cut in it so I would now be fine. I spent 5 days in the > > hospital after the ERCP because I had severe pain. My Amylase was > > normal-113, but the AST and ALT were elevated. Also, my white > blood > > count, red blood count, HCT and hemoglobin were low. > > > > Other than the initial attack in January, my Amylase has been > normal > > (or slightly low) every time it's been checked. My lipase was > > checked once in March and was normal. I had abdominal x-rays, ct > > scan, and small bowel follow through in March and all were normal. > > An ultrasound in March revealed mild dilation (5 mm)of the common > > bile duct. > > > > Most recent bout of pain and vomiting was on July 5th. I ended up > in > > the ER. Again the Amylase was normal (42 on July 5th and 40 on > July > > 6th). Lipase on July 6th was low - it was 0. My red blood count, > > hemoglobin, and hematocrit were also low. This time, my stomach > > swelled to the point of looking like I was 8 months pregnant and > was > > hard as a rock. The swelling didn't start until a couple of days > > after the attack. I saw my gastro on July 10th. I had gained 21 > > pounds in less than 3 weeks and my stomach was huge. Gastro said > > there was nothing wrong with my pancreas since Amylase and Lipase > > were not elevated. He said pain is probably from spasms in my bile > > duct caused by eating rich foods. He said the weight gain was from > > my diet and my stomach didn't look swollen or feel hard to him. He > > said I simply have irritable bowel syndrome and was so tired I felt > > as though I couldn't go on because I was depressed over the stress > in > > my life. I told him my life is now wonderful and the only thing > > causing me stress was that I felt like shit! The gastro did > schedule > > a CT scan which revealed nothing. I woke up on July 14th and the > > swelling in my stomach was almost gone and my pain was back to a > dull > > ache. I felt wonderful! The next few days were great - very > little > > pain and I actually had energy! I weighed on July 17th - exactly > one > > week after seeing the gastro and I had dropped 14 pounds - guess my > > depression lifted (hah!). It's now July 19th and my energy level > is > > once again going down. I'm back to the constant dull ache and am > > also having intermittent burning pains in my stomach under my right > > rib. > > > > I've made an appointment with a different gastro. There may be > > nothing wrong with my pancreas - but something caused me to gain 21 > > pounds in less than 3 weeks and then lose 14 pounds in a week. > > Something is causing this pain in my gut and I want to know what it > > is. > > > > Any opinions, suggestions, or words of wisdom will be greatly > > appreciated. > > > > , It sounds like you may have chronic pancreatitis. You can > have attacks of pancreatitis without your lipase & amylase going > high. I do the very same thing & have the very same pain you desribed > under your right breast & shoulder blade. Iv'e suffered with this > for 5 years & each attack drains me more. My last severe attack was > in March of this year and I spent 1 month in the hospital. You need > a really good GI doc & a pain management clinic to help you. I also > gained the weight & looked 8 months pregnant. Most people have > problems with loosing weight & not able to put it on. I am just the > opposite. I have been on a low fat diet for 4 years. I think the > weight gain is from taking so much enzymes. I had a radiofrequency > nurolysis done on June 23rd & I haven't had the pain under my breast > & shoulder. What a relief that is!!!! But I really suggest you find > a GI doc with a lot of pancreatitis experience. I went thru 3 > different Groups before I found the one I'm with now. He has helped > me a lot!..The 2nd group I was with said I did'nt have pancreatitis > it was lupus. I had GOLD treatments for that. I DON " T HAVE LUPUS AT > ALL. This is a very frustrating disease & it takes a doc with lots > of experience. Where do you Live? , Thanks for sharing with me. I live in North Alabama. As I mentioned in my post, I have made an appointment with a new gastro. It's not until the middle of August. How do I find a gastro that has a lot of experience with pancreatitis? There are only 5 groups of gastros in Huntsville (the nearest decent size town to where I live). Today my pain has increased again. I woke up at 5 this morning with my stomach really hurting. I am drinking coffee as I write this, but I am afraid to eat. My stomach looks like it is swelling up again. Not so bad as before, so maybe I am just imagining it. I wonder if I am in the beginning stages of chronic pancreatitis. How do they make the diagnosis of chronic pancreatitis if your lipase and amylase are not elevated and the ct scan doesn't show any calcification or necrosis of the pancreas? Weston loggiekw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 I have a question for everyone. I have noticed in the past when I drank diet coke it usually set off an attack. does this happen to anyone else. I asked my doctor and he said it should not make a difference. I know it does at least with me. anyone else? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 In a message dated 7/20/00 6:58:52 PM Eastern Daylight Time, rastif2020@... writes: << I have a question for everyone. I have noticed in the past when I drank diet coke it usually set off an attack. does this happen to anyone else. I asked my doctor and he said it should not make a difference. I know it does at least with me. anyone else? >> I have taken a few sips of soda pop and started getting a pain in my stomach so I stopped drinking it. Only if I am very thirsty will take a couple sips of my husbands soda. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 > > > > ><html><body> > ><tt> > >I thought I would start a new message since the other one is so long.<BR> > >There are other test they can do to determine if it is pancreatitis. & nbsp; > ><BR> > >I'm sorry to hear that you are hurting so much again. & nbsp; You need > >to <BR> > >start watching what you eat to see if that helps. & nbsp; Go on a low- > >fat <BR> > >diet and stay away from caffiene & amp; sodas. & nbsp; When my pancreatitis > >acts <BR> > >up I go on a clear liguid diet untill the pain goes away. & nbsp; Then > >I <BR> > >start out eating again with bland foods, rice, mashed potatoes and <BR> > >low fat puddings. If I were you I would call each doctor in that town > ><BR> > > & amp; ask how much pancreas experience they have had & amp; then get > >an <BR> > >appointment with the one you choose. & nbsp; I would hate to be in the > ><BR> > >situation you are, although it took a while for the doctors to find > ><BR> > >out what was wrong with me,even though my lipase level was real high.<BR> > >Do you still have your gall bladder? & nbsp; The first group of doctors > >I <BR> > >had more or less said there's nothing more we can do for you and sent > ><BR> > >me on my way....to hell!!!! & nbsp; The doc I have now studied under Dr. > ><BR> > >Toskes at Shands hospital and he has plenty of experience with this > ><BR> > >disease. & nbsp; Sorry I don't have any help to solve your problem.<BR> > ><BR> > >Keep hanging in there & amp; I'm sure they will find the cause of your > ><BR> > >stoamach problems....Hope you are having a good afternoon! <BR> > ><BR> > ></tt> > > > ><!-- |**|begin egp html banner|**| --> > > > > > ><hr> > ><!-- |@|begin eGroups banner|@| runid: 6352 crid: 2516 --> > ><a target= " _blank " href= " http://click./1/6352/0/_/593940/_/964124520/ " ><center > > ><img width= " 468 " height= " 60 " > > border= " 0 " > > alt= " " > > src= " http://adimg./img/6352/0/_/593940/_/964124520/ColorMeR evised- > >468x60.gif " ></center><center><font color= " black " ></font></center></a> > ><!-- |@|end eGroups banner|@| --> > ><hr> > > > ><!-- |**|end egp html banner|**| --> > > > ><tt> > >PANCREATITIS SUPPORT NETWORK<BR> > >Online e-mail group<BR> > ><BR> > >To reply to this message hit & quot;reply & quot; or send an & nbsp; e- mail > >to: & nbsp; & nbsp; Pancreatitisegroups<BR> > ><BR> > >To subscribe to this e-mail group, simply send an e-mail to: & nbsp; & nbsp; > >Pancreatitis-subscribeegroups<BR> > ><BR> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 am I correct in understanding there is no " secret " menu and it's basically a trial and error process. And... even then you body reacts to some foods sometimes and not others? Dave Shedd At Thu, 20 Jul 2000 20:21:51 -0000, " Almas " wrote: > ><html><body> ><tt> >I thought I would start a new message since the other one is so long.<BR> >There are other test they can do to determine if it is pancreatitis. & nbsp; ><BR> >I'm sorry to hear that you are hurting so much again. & nbsp; You need >to <BR> >start watching what you eat to see if that helps. & nbsp; Go on a low- >fat <BR> >diet and stay away from caffiene & amp; sodas. & nbsp; When my pancreatitis >acts <BR> >up I go on a clear liguid diet untill the pain goes away. & nbsp; Then >I <BR> >start out eating again with bland foods, rice, mashed potatoes and <BR> >low fat puddings. If I were you I would call each doctor in that town ><BR> > & amp; ask how much pancreas experience they have had & amp; then get >an <BR> >appointment with the one you choose. & nbsp; I would hate to be in the ><BR> >situation you are, although it took a while for the doctors to find ><BR> >out what was wrong with me,even though my lipase level was real high.<BR> >Do you still have your gall bladder? & nbsp; The first group of doctors >I <BR> >had more or less said there's nothing more we can do for you and sent ><BR> >me on my way....to hell!!!! & nbsp; The doc I have now studied under Dr. ><BR> >Toskes at Shands hospital and he has plenty of experience with this ><BR> >disease. & nbsp; Sorry I don't have any help to solve your problem.<BR> ><BR> >Keep hanging in there & amp; I'm sure they will find the cause of your ><BR> >stoamach problems....Hope you are having a good afternoon! <BR> ><BR> ></tt> > ><!-- |**|begin egp html banner|**| --> > > ><hr> ><!-- |@|begin eGroups banner|@| runid: 6352 crid: 2516 --> ><a target= " _blank " href= " http://click./1/6352/0/_/593940/_/964124520/ " ><center> ><img width= " 468 " height= " 60 " > border= " 0 " > alt= " " > src= " http://adimg./img/6352/0/_/593940/_/964124520/ColorMeRevised- >468x60.gif " ></center><center><font color= " black " ></font></center></a> ><!-- |@|end eGroups banner|@| --> ><hr> > ><!-- |**|end egp html banner|**| --> > ><tt> >PANCREATITIS SUPPORT NETWORK<BR> >Online e-mail group<BR> ><BR> >To reply to this message hit & quot;reply & quot; or send an & nbsp; e-mail >to: & nbsp; & nbsp; Pancreatitisegroups<BR> ><BR> >To subscribe to this e-mail group, simply send an e-mail to: & nbsp; & nbsp; >Pancreatitis-subscribeegroups<BR> ><BR> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Dear , Your story seems so similar to mine! I have been dealing with this pain and nausea for a year now. As in your case, every test I have had has come back within normal limits or normal. CT scans, abd. sonogram, MRCP, even had an ERCP which didn't show anything. I have seen 2 different GI docs and my second one made some statements that led me to believe he thinks this is all 'in my head'. I wish I had some words of wisdom for you. I am still struggling through all this myself. Sometimes it helps to know that you aren't alone in what you are going through. Let me know if you come up with something and I will do the same. Take care!!! Quote Link to comment Share on other sites More sharing options...
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