Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Cecelia: After reading about your experience at The Mayo in Minn, I'm sure glad that they *rejected* my case back in 1996. I, too, was told that it was in all my head. And that didn't entail any out-of-state travel. In fact, I was told that I was probably neurotic, unfulfilled and sexually frustrated!! That came from a very prominent NY City GI doctor. I don't know much, if anything, about pancreas divisum other than it's awful. Have you done any online research yet? What I can tell you about pancreatitis is that it hits without rhyme or reason. And we're often feeling rather well between attacks. I'm sure that other members will be able to offer more info and insight. -E(llen) on Long Island, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Cecilia: I found this article rather quickly on Google: http://www.emedicine.com/med/topic3001.htm It was one of the 987 matches to " pancreas divisum. " I think that you should read it. Along with lots of info about the condition it clearly states the following: <<Patients with symptomatic pancreas divisum present with recurrent pancreatitis and may eventually develop chronic pancreatitis. Symptoms can be mild with only occasional epigastric pain occurring postprandially; but more often, the symptoms are severe with clinically significant disability.>> -E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 In a message dated 12/28/01 11:25:19 AM Eastern Standard Time, soce@... writes: > > > Hi! > > I have been feeling well, so have not posted lately - sorry. I also have > pancreas divisum, but so far, no dr. has said my pancreatitis is associated > with it. I have " idiopathic pancreatitis " according to all the " experts. " > > I am diagnosed with " recurring acute pancreatitis. " I have not gotten to > cp, > yet. My dr. says I won't. How does he know? I have gotten pancreatitis > and > was hospitalized Dec. 2000, June, Oct, Nov 2001. Everytime, I am lucky > that > I am in the hospital 5 days or less with levels starting in the several > thousands. I have been evaluated and had ERCPs with Dr. Lehman at IU Med > Center July 2001 and Dr.Nyugen at Mayo's in sdale February 2001, with > no > luck. I went to Mayo's in MINN in 1994. After a battery of tests there, I > was told " it was in my head " and just a muscle problem and to use a heat > lamp!!! > > Questions; Will my pancreatits eventually turn into CP? Is there anyway > to > know if my pancreas divisum is causing my pancreatitis? How come sometimes > I > feel great and then pancreatitis hits me out of the blue? I know I should > be > asking the drs. these questions - but as you read above - I have already > asked and get no answers. > > Thanks for all the support. > > Cecilia in AZ > > Hi Cecilia, I had pancreas divisum also and like you I was told the same things. I also went to Indiana University hospital and I had Dr. Lehman as my doctor there. He did so many ercp's on me and stints and recommended the peustow surgery. After the last stint I had he told my husband that after the surgery I would still have pain and I would need pain blocks. That did it for me and the stints. I made up my mind that he couldn't cure me and I was heading down the wrong path. That is when I searched the net and found Sue Rebello's Story about her having pancreas divisum and being cured not at Mayo but at the Fairview University Medical Center in Minneapolis, Minnesota. I decided to have my pancreas removed and the islet cells transferred to my portal vein in my liver. I am now completely cured of chronic pancreatitis. Before I had my pancreas removed I was told by surgeons that I should have a peustow, just the tail removed, a Whipple, and of course it was all in my head and I need to see a shrink. I really was angry when they said that to me. From what you have written you do have chronic pancreatitis and it will get much worse. Sorry to give you such bad news but what you described is just what happened to me. Every time you have an attack you are loosing precious islet cells that could keep you from becoming a diabetic. I don't want to scare you I just want to help you. If you would like to know more about Sue's Story or if you would like Dr. Sutherland's web site where he explains the pancreatectomy and islet cell transfer just let me know and I will send it to you. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Cecelia, well, the answers to your questions aren't cut and dried. I've also got a pancreatic divisum and had idopathic reoccuring pancreatitis and I was told that it COULD become chronic, not necessarily that it would. Unfortunately for me, it became chronic. Some physicians feel that repeated cases of acute pancreatitis cannot become chronic, but they are wrong, it can. Reoccuring pancreatitis is like that, it just hits out of the blue even though you were feeling fine just hours before. Until my second to last attack (I just got out from the hospital from another one) I only had acute attacks. I've had about 20 or so attacks now. The problem is that the doctors still do not fully know the pancreas and they don't always know why it does the things it does. They don't have any way to tell who will and who won't develop chronic pancreatitis. And not all that many doctors know how to diagnose chronic pancreatitis. I don't think the doctors really know how to tell if the divisum is causing the pancreatitis. They said they didn't know for sure if mine was or wasn't the cause, but they treated it as if it was. Dr. Cello at UCSF said that it was causing a feedback type loop of acute pancreatitis and that that probably contributed to it becoming chronic. Basically my ducts are fully divided, one didn't function at all (till I had surgery to try and correct this) and they were too close together and too small and it was backing up the enzymes in the pancreas. And eventually, viola, a case of pancreatitis occurred. Now it's so damaged that they occur for the slightest reason, this last one due to coughing from pnuemonia. Don't know if this will help, but it's what I know from my experience and my physicians. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
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