Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Shana wrote: Hello My name is Shana. Im 22, and live in Halifax, Nova Scotia Canada. I'm new to this list, but not to pancreatitis. My story is kinda long and complicated. I had abdominal pain and chronic vomiting that started in July 1997. For a long time my doctors told me it was psychological until February 1998, when I wound up in the ER and they checked my amylase and lipase. My amylase was up in the 300's and my lipase was over 5000. My transaminases were also elevated. An ERCP was done in April that showed stones and sludge in my ducts. They were removed, but my symptoms didn't improve and in June they removed my gallbladder, but it didn't help for long. I was in and out of hospital that whole year. Another ERCP showed I had formed a stone even though my gallbladder was gone, and they removed that and performed a sphincterotomy. It didn't help. Then in febuary/march of 1999 I was admitted for 6 weeks because of malnutrition (from daily vomiting), a weight loss of 70 pounds in 5 months, and because my amylase and lipase wouldn't go down. Another ERCP showed that my ducts were only partially open. I was diagnosed with chronic pancreatitis by a GI and surgeon but my PCP still maintained the pain and vomiting were psychological, and would not treat it or send me to a pain clinic. I switched doctors, and received a bit better treatment, being put on enzymes and occasionally giving me a prescription for dilaudid when things got bad. In March of this year I moved here to Halifax, which is a bigger city, where I finally got in to see a good GI and got into a pain clinic. My CT scans haven't shown any significant abnormalities, but the ERCP's do. Some doctors here still say I can't have ch. pancreatitis if my CT is normal, but the specialists have told me that the ERCP is the most sensitive test and will pick up abnormalities the CT SCAN can miss. I'va had at least 7 bouts of acute pancreatitis where my enzymes and everything went sky high, but it seems now when I get the attacks my enzymes no longer go up. I've read that happens after awhile with chronic pancreatitis, although not many doctors seem to know this! My doctors have told me that in addition to the damage to the pancreatic tissue, i also have damage to the nerves around the pancreas, which is what causes a good deal of the pain as well I'm lucky enough to be being treated with hydromorph contin, a long acting form of dilaudid, with instant release dilaudid for breakthrough pain. I also take elavil, and was on a medication called neurontin, which is used for nerve pain, but it made me sicker than I was to begin with! The hydromorph contin keeps the pain under control for the most part, but so often I get a flare up that I can't control at home, and have to go to the ER. They used to give me IV fentanyl, however, one doctor has since labelled me a *drug seeker* so now I am usually turned away without anything, despite my known diagnosis of chronic pancreatitis. They say because my enzymes don't go up then I can't be having an acute attack. I've given up arguing. I'm actually in the middle of an investigation of one doctor who was extremely rude, and wrote a bunch of blatant lies in my chart. (little did he know I regularly ask my doctor for copies of my chart) What he and another doctor wrote has affected the way I am treated, and it isn't fair, or ethical, because what they wrote is not true. Despite all this I know I am very fortunate to be receiving adequete medications for my pain, especially where I am young. It seems to me that most young people who have chronic pain don't get the medications they need, simply because of doctors predjudices about young people being addicts. I asked my pain doctor about celiac plexus blocks, but at this pain clinic they only do them for patients with pancreatic cancer. And from what I hear they don't work all that well, so I am currently doing reasearch on rhizotomies, which is where they cut selective nerves that supply the pancreas in spinal canal, thus disabling the pain. I don't know if its been used for pancreatitis, but I'm looking into it. Does anyone know of any other procedures? I hate having to be on narcotics, because I know that where I am so young, I am going to run into problems with tolerance. The past 3 months or so I have been having more problems then usual. I have more frequent bouts of pain and vomiting. My pain is in the upper abdomen, goes through to my back and often up into my left shoulder. I last saw my GI in June, and am scheduled to see him again October 26th. He didn't think and ERCP was necessary back in June, but I think one should be done. Its been 18 months since my last one, and that one was abnormal, showing the ducts were only partially open. But they don't like doing them on me inless absolutly necessary, because I am one of the fortunate (NOT) ones who develop acute ERCP induced pancreatitis. Well, i guess I have rambled on long enough. i am just so grateful to have found a group of people who understand what I am going through! I look forward to reading everyone's stories, and learning about how you all cope with this nasty disease. Take Care Shana pancreatitis diagnosed 02/98ICQ# 69084502http://www.geocities.com/shanajs21/home.html hello shana i was diagnosed as having CP in the year 1989 after the ercp and was having pains for almost more than a year when i met a docter specialsing in pancreatitis he was a very intelligent doctor . he had carried out a survey /research as part of his thesis to get a degree in gasteroenterology.according to him out of nearly 500 patients followed by him who had CP almost in 25% of the cases the duct opens on its own or finds its way through the pancreas,in 25% cases the disease remains as it is,in 25% of the casesit worsens creating other problems like diabetes etc. the fate of the rest of 25% is not known. since 1989 i have had pains only when i consume fatty food specially red meat etc.recently i have developed diabetes also. i therefore feel that have faith in GOD every thing will be fine yours SURINDER PAL,INDIA PANCREATITIS SUPPORT NETWORKOnline e-mail groupTo reply to this message hit "reply" or send an e-mail to: PancreatitisegroupsTo subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 In a message dated 9/12/00 10:28:46 PM Central Daylight Time, surinderpal2000@... writes: << when i met a docter specialsing in pancreatitis he was a very intelligent doctor . he had carried out a survey /research as part of his thesis to get a degree in gasteroenterology.according to him out of nearly 500 patients followed by him who had CP almost in 25% of the cases the duct opens on its own or finds its way through the pancreas,in 25% cases the disease remains as it is,in 25% of the casesit worsens creating other problems like diabetes etc. the fate of the rest of 25% is not known. since 1989 i have had pains only when i consume fatty food specially red meat etc.recently i have developed diabetes also. i therefore feel that have faith in GOD every thing will be fine yours SURINDER PAL,INDIA >> surinder - what was the doctor's name??? i'm curious because in oct i am going to see a dr. sharma and he studied in india, as well as here in the u.s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 djssekis@... wrote: << when i met a docter specialsing in pancreatitis he was a very intelligent doctor . he had carried out a survey /research as part of his thesis to get a degree in gasteroenterology.according to him out of nearly 500 patients followed by him who had CP almost in 25% of the cases the duct opens on its own or finds its way through the pancreas,in 25% cases the disease remains as it is,in 25% of the casesit worsens creating other problems like diabetes etc. the fate of the rest of 25% is not known. since 1989 i have had pains only when i consume fatty food specially red meat etc.recently i have developed diabetes also. i therefore feel that have faith in GOD every thing will be fine yours SURINDER PAL,INDIA >>surinder - what was the doctor's name??? i'm curious because in oct i am going to see a dr. sharma and he studied in india, as well as here in the u.s.PANCREATITIS SUPPORT NETWORKOnline e-mail groupTo reply to this message hit "reply" or send an e-mail to: PancreatitisegroupsTo subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2000 Report Share Posted September 14, 2000 Is your DR sharma in the WA area and does he have a partner named Yee? we might be in the same neighborhood, I am new member who just reads a lot of the posts but have not replayed, as with all of you i am dealing with cp and have been since 1994 when the " diagnosis " was confirmed, but according to DR Yee had had it for several years prior but was misdiagnosed. Have had stents, several ERCPs, sphincteromy, now ODI real well, although he does not do his job AT ALL!! Am now on enzymes, and pain meds which I am having reluctance dealing with, don't want to be dependent, but see no choice, always nauseous (sp) and have diarherrea all the time, I remember no other life any more. k8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2000 Report Share Posted September 14, 2000 In a message dated 9/14/00 9:12:09 AM Central Daylight Time, hoagie855@... writes: << Is your DR sharma in the WA area and does he have a partner named Yee? >> no - at least not now. he is in little rock at university of ark medical sciences. deb Quote Link to comment Share on other sites More sharing options...
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