Guest guest Report post Posted October 2, 2001 hello cheryl, First, i am saddened to hear your complications with this chronic illness we all share but i am glad you found this support group and i trust you may find this group different. i am relatively new but have gained a wealth of knowledge and support. i too have chronic hereditary pancreatitis. i am 33 yrs old. it's not fun. but i have learned soooo much thru this group and my new doctors at the mayo clinic.. i now have a better attitude towards dealing with my incurable chronic disease. certainly this group is resourceful and encouraging. i hope benefit as well! stay well in Georgia --- mmorga3@... wrote: > HI > I am trying to find a group to discuss CP with, that > does not judge > me for being a health care professional and > defensive when the health > care profession is critisized.I am well aware of the > pitfalls of > health care, Ihave been in it for eighteen years. I > have seen a > decline in treatment and a major decline in pt. > care. > > But I am also a person with a chronic illness that > needs to talk. > I do not know what to expect from this disorder and > at times ask why > me. > > If this acceptable to everyone please let me know. > Becuase one group > I spoke with is not able to accept my defense of > medicine. But keep > in mind that I know there are problems (I myself > have encountered > them), but would like to help other sort through the > problems and > maybe get the answers that other have concerns > about. > > Thank you > Cheryl > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 2, 2001 hello cheryl, First, i am saddened to hear your complications with this chronic illness we all share but i am glad you found this support group and i trust you may find this group different. i am relatively new but have gained a wealth of knowledge and support. i too have chronic hereditary pancreatitis. i am 33 yrs old. it's not fun. but i have learned soooo much thru this group and my new doctors at the mayo clinic.. i now have a better attitude towards dealing with my incurable chronic disease. certainly this group is resourceful and encouraging. i hope benefit as well! stay well in Georgia --- mmorga3@... wrote: > HI > I am trying to find a group to discuss CP with, that > does not judge > me for being a health care professional and > defensive when the health > care profession is critisized.I am well aware of the > pitfalls of > health care, Ihave been in it for eighteen years. I > have seen a > decline in treatment and a major decline in pt. > care. > > But I am also a person with a chronic illness that > needs to talk. > I do not know what to expect from this disorder and > at times ask why > me. > > If this acceptable to everyone please let me know. > Becuase one group > I spoke with is not able to accept my defense of > medicine. But keep > in mind that I know there are problems (I myself > have encountered > them), but would like to help other sort through the > problems and > maybe get the answers that other have concerns > about. > > Thank you > Cheryl > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 In a message dated 10/2/01 11:02:52 AM Eastern Daylight Time, mmorga3@... writes: > But I am also a person with a chronic illness that needs to talk. > I do not know what to expect from this disorder and at times ask why > me. > Welcome Cheryl, Hope you find this board informative and useful, I think it is. It's very open and while " defense " is OK the thing that seems to get some folks goat is personal attack. Read the board, comment as you choose, help others if you can, and I hope you are having a good day Best wishes Poncho Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 In a message dated 10/2/01 11:02:52 AM Eastern Daylight Time, mmorga3@... writes: > But I am also a person with a chronic illness that needs to talk. > I do not know what to expect from this disorder and at times ask why > me. > Welcome Cheryl, Hope you find this board informative and useful, I think it is. It's very open and while " defense " is OK the thing that seems to get some folks goat is personal attack. Read the board, comment as you choose, help others if you can, and I hope you are having a good day Best wishes Poncho Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 In a message dated 10/2/01 11:02:52 AM Eastern Daylight Time, mmorga3@... writes: > But I am also a person with a chronic illness that needs to talk. > I do not know what to expect from this disorder and at times ask why > me. > Welcome Cheryl, Hope you find this board informative and useful, I think it is. It's very open and while " defense " is OK the thing that seems to get some folks goat is personal attack. Read the board, comment as you choose, help others if you can, and I hope you are having a good day Best wishes Poncho Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 , I to live in Georgia. Just outside of Atlanta. Thank for the words of encourgement. My major concern is the progression of the disorder. I have know idea of what to expect. And I have a fear of the unknown. It is just graet to be able to talk to people who share the problems as me. Cheryl > > HI > > I am trying to find a group to discuss CP with, that > > does not judge > > me for being a health care professional and > > defensive when the health > > care profession is critisized.I am well aware of the > > pitfalls of > > health care, Ihave been in it for eighteen years. I > > have seen a > > decline in treatment and a major decline in pt. > > care. > > > > But I am also a person with a chronic illness that > > needs to talk. > > I do not know what to expect from this disorder and > > at times ask why > > me. > > > > If this acceptable to everyone please let me know. > > Becuase one group > > I spoke with is not able to accept my defense of > > medicine. But keep > > in mind that I know there are problems (I myself > > have encountered > > them), but would like to help other sort through the > > problems and > > maybe get the answers that other have concerns > > about. > > > > Thank you > > Cheryl > > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 , I to live in Georgia. Just outside of Atlanta. Thank for the words of encourgement. My major concern is the progression of the disorder. I have know idea of what to expect. And I have a fear of the unknown. It is just graet to be able to talk to people who share the problems as me. Cheryl > > HI > > I am trying to find a group to discuss CP with, that > > does not judge > > me for being a health care professional and > > defensive when the health > > care profession is critisized.I am well aware of the > > pitfalls of > > health care, Ihave been in it for eighteen years. I > > have seen a > > decline in treatment and a major decline in pt. > > care. > > > > But I am also a person with a chronic illness that > > needs to talk. > > I do not know what to expect from this disorder and > > at times ask why > > me. > > > > If this acceptable to everyone please let me know. > > Becuase one group > > I spoke with is not able to accept my defense of > > medicine. But keep > > in mind that I know there are problems (I myself > > have encountered > > them), but would like to help other sort through the > > problems and > > maybe get the answers that other have concerns > > about. > > > > Thank you > > Cheryl > > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 , I to live in Georgia. Just outside of Atlanta. Thank for the words of encourgement. My major concern is the progression of the disorder. I have know idea of what to expect. And I have a fear of the unknown. It is just graet to be able to talk to people who share the problems as me. Cheryl > > HI > > I am trying to find a group to discuss CP with, that > > does not judge > > me for being a health care professional and > > defensive when the health > > care profession is critisized.I am well aware of the > > pitfalls of > > health care, Ihave been in it for eighteen years. I > > have seen a > > decline in treatment and a major decline in pt. > > care. > > > > But I am also a person with a chronic illness that > > needs to talk. > > I do not know what to expect from this disorder and > > at times ask why > > me. > > > > If this acceptable to everyone please let me know. > > Becuase one group > > I spoke with is not able to accept my defense of > > medicine. But keep > > in mind that I know there are problems (I myself > > have encountered > > them), but would like to help other sort through the > > problems and > > maybe get the answers that other have concerns > > about. > > > > Thank you > > Cheryl > > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 I'm sure that most people don't even really know what JCAHO is. The medical community is very confusing with it's mass of laws, regulations, standards and guidelines that the various hospitals and medical centers must or try to abide by. Here at least, if you correct a person that something is a " standard " and not a " law " , they usually listen, especially if they know you work in the field. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 I'm sure that most people don't even really know what JCAHO is. The medical community is very confusing with it's mass of laws, regulations, standards and guidelines that the various hospitals and medical centers must or try to abide by. Here at least, if you correct a person that something is a " standard " and not a " law " , they usually listen, especially if they know you work in the field. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2001 I'm sure that most people don't even really know what JCAHO is. The medical community is very confusing with it's mass of laws, regulations, standards and guidelines that the various hospitals and medical centers must or try to abide by. Here at least, if you correct a person that something is a " standard " and not a " law " , they usually listen, especially if they know you work in the field. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Angel: Welcome. I'm a newbie also. I'm sure that we all have many questions for you. The first few that I can think of are: What problems and symptoms do you have? Who told you that it's your pancreas? What tests have you undergone? How are you being treated? -E Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Angel: Welcome. I'm a newbie also. I'm sure that we all have many questions for you. The first few that I can think of are: What problems and symptoms do you have? Who told you that it's your pancreas? What tests have you undergone? How are you being treated? -E Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Has anyone discussed pancreatic enzymes? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Has anyone discussed pancreatic enzymes? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Has anyone discussed pancreatic enzymes? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 In a message dated 11/30/01 4:41:43 PM Eastern Standard Time, campcanoe98@... writes: > Welcome Angel, keep reading this board and all will be known to you in due course. Post with regular questions and someone will likely answer. Express yourself, query, vent, inform . . . it's all here Cold in MI yet??? Poncho - GA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 In a message dated 11/30/01 4:41:43 PM Eastern Standard Time, campcanoe98@... writes: > Welcome Angel, keep reading this board and all will be known to you in due course. Post with regular questions and someone will likely answer. Express yourself, query, vent, inform . . . it's all here Cold in MI yet??? Poncho - GA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 In a message dated 11/30/01 4:41:43 PM Eastern Standard Time, campcanoe98@... writes: > Welcome Angel, keep reading this board and all will be known to you in due course. Post with regular questions and someone will likely answer. Express yourself, query, vent, inform . . . it's all here Cold in MI yet??? Poncho - GA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Hi Angel - welcome to the group. I am also fairly new so I am probably not the best one to answer you but here goes. I have not seen any real hard and fast rules - express yourself and your opinion but try not to be to critical of another's thoughts or ideas about sums it up. The group is great at answering questions, asking questions you might not have thought of, and providing general information. There is a chat at the top5plus5.com every night at 5:30 PST and 8:30 EST (I am sure someone will correct me if that is wrong (this computes to 6:30 MST - I finally figured that out and just had to share it with someone). Feel free to tell your story, tell a joke, tell your problems or whatever. Someone will always listen and respond. Anyway, I have had CP since July, originally came on as an acute attack but is now going on month 6 as of Dec. 4, spent 8 days in the hospital, 3 of which it took them to figure out what was wrong, and now take 15 pills a day plus pain killers so that I can continue to work and live my life. Anyway, I am sure that you will get a lot of good information, good feelings and support from this group and hopefully you are too bored by this message to drop out already. TTFN, New > Hello All, > > I Angel 21/f from Michigan. I joined the group the other day and > tried to post but Yahoo ate it. I have not been diagnosed with CP > but there is something wrong with my pancreas and I haven't got a > satisfactory reason why it is causing so much trouble and why my > physicians want to treat my illness the way they do. > > I am in constant pain. It has affected college, work and my social > life. I have missed two semesters of school and I hope to go back > next semester but that is defintely up in the air. > > More about me later . . . I could write a book, as I'm sure many of > you could. I would like to know more about the group. Are there any > posting guidelines? > > Hope to be hearing from others soon. > > Regaurds, > > Angel > > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: PancreatitisYahoogroups > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeYahoogroups > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Hi Angel - welcome to the group. I am also fairly new so I am probably not the best one to answer you but here goes. I have not seen any real hard and fast rules - express yourself and your opinion but try not to be to critical of another's thoughts or ideas about sums it up. The group is great at answering questions, asking questions you might not have thought of, and providing general information. There is a chat at the top5plus5.com every night at 5:30 PST and 8:30 EST (I am sure someone will correct me if that is wrong (this computes to 6:30 MST - I finally figured that out and just had to share it with someone). Feel free to tell your story, tell a joke, tell your problems or whatever. Someone will always listen and respond. Anyway, I have had CP since July, originally came on as an acute attack but is now going on month 6 as of Dec. 4, spent 8 days in the hospital, 3 of which it took them to figure out what was wrong, and now take 15 pills a day plus pain killers so that I can continue to work and live my life. Anyway, I am sure that you will get a lot of good information, good feelings and support from this group and hopefully you are too bored by this message to drop out already. TTFN, New > Hello All, > > I Angel 21/f from Michigan. I joined the group the other day and > tried to post but Yahoo ate it. I have not been diagnosed with CP > but there is something wrong with my pancreas and I haven't got a > satisfactory reason why it is causing so much trouble and why my > physicians want to treat my illness the way they do. > > I am in constant pain. It has affected college, work and my social > life. I have missed two semesters of school and I hope to go back > next semester but that is defintely up in the air. > > More about me later . . . I could write a book, as I'm sure many of > you could. I would like to know more about the group. Are there any > posting guidelines? > > Hope to be hearing from others soon. > > Regaurds, > > Angel > > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: PancreatitisYahoogroups > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeYahoogroups > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 > Hello All, > > I Angel 21/f from Michigan\ Angel, Hi, I really feel sorry for you to suffer this way so young. I have two sons slightly older than you and I know I can not stand to see them suffer, even with a cold. Where in Michigan are you from. I am from Shelby Township, about 25 miles north of Detroit. What doctors are you seeing, are they specialist? You should come the the chat room some night, you will get to know everyone and find out a lot of information. If there is anything I can do for you, please email me and let me know, I know you may sometimes just need to vent, I sure have done my share. Please take care, and let us know how you are doing? Sharon in MI Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 > Hello All, > > I Angel 21/f from Michigan\ Angel, Hi, I really feel sorry for you to suffer this way so young. I have two sons slightly older than you and I know I can not stand to see them suffer, even with a cold. Where in Michigan are you from. I am from Shelby Township, about 25 miles north of Detroit. What doctors are you seeing, are they specialist? You should come the the chat room some night, you will get to know everyone and find out a lot of information. If there is anything I can do for you, please email me and let me know, I know you may sometimes just need to vent, I sure have done my share. Please take care, and let us know how you are doing? Sharon in MI Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Thanks for the welcome. To answer your questions: Earlier in this year I had moderate, unrelenting pain in my upper left quadrant that wouldn't go away. I went to my family care dr in March and she told me it was probably just a muscular problem. Told me to take Ibuprofen and wait it out. In late May I woke up with terrible pain. I went to the walk-in clinic and the dr thought it was my gallbladder. Blood was drawn and he scheduled a gallbladder ultrasound the next day. The next day I was still in pain, went for my gallbladder ultrasound and stopped by the walk-in clinic because the dr asked me to do so. He came out immediately and told me he had been looking for me everywhere, called me, my parents, called the local hospitals because he thought surely I had been admitted. My amalyse and lipase levels were off the charts. He said it was " possible " that I had pancretitis. Sent me home told me to eat a no fat diet and wait to improve. Things did not improve. I couldn't eat or drink anything without vomiting. I went to see my family care dr again. My regular dr was now gone and I was assigned to a new resident. He advised me to stop taking some medication that I was taking and set up a CT scan. I was found to have a cyst a little larger then a golf ball on the tail of my pancreas. In the meanwhile he told me that I was to go to the ER immediately if I didnt feel well. Well the ER knows me by name now. I have been there at least a dozen times through this all. The ER dr ordered a hydascan to yet again test my gallbladder. Nothing. I was finally admitted in mid July. I could no longer function at home, I had dropped out of school for the summer, and I couldn't work. I was put on demerol to manage my pain-I felt wonderful. I had my first consult with a GI dr. I had another CT scan, a general endoscopy of my stomach/pancreas, MRI, and total barium studies. I wanted the cyst drained but the GI Dr. would not allow it. I was released and my problems did not end. Went back to see my family care and he set up an appointment with another GI dr. Went to see her and she said lets drain the cyst. Well the night before I was going to get it done I got so violently ill that I was in the ER yet again. I saw another GI dr and he said he wasnt going to allow me to get the drainage. He admitted me for pain control and refered me to a dr. in Milwaukee. My problems continued. I couldnt get into the dr. in Milwaukee for a month. I went down there met the dr for 5 minutes--I was a course patient for a conference. I had an endoscopic ultrasound/ERCP done. My cyst was drained, a biopsy was taken, and a stent was placed. It went very well. I felt poorly for about two days then I felt like a normal human being for about two weeks. I got sick again. Started taking pain meds to control it until my follow-up. In the meanwhile the hospital had lost the fluid and biopsy from my cyst. Wonderful. I went back for my second EUS/ERCP and stent removal. Things did not go as well this time. I had lots of pain and it really hasn't improved since. At this time he has suggested a partial removal of my pancreas pending my test results and I met with the surgeon. Well the results came back good. The cyst wasn't a mucous cyst which means it didn't need to come out immeditely. He told me that surgery was only needed if I experience more pain. Well the pain is still there, but I will not accept surgery as my only option. For the time being I am just dealing with the pain. I guess I'm just trying to take a break from the dr's and that is where I am at right now. That's my story. Angel > Angel: > > Welcome. I'm a newbie also. > > I'm sure that we all have many questions for you. > > The first few that I can think of are: > > What problems and symptoms do you have? > Who told you that it's your pancreas? > What tests have you undergone? > How are you being treated? > > -E Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2001 Thanks for the welcome. To answer your questions: Earlier in this year I had moderate, unrelenting pain in my upper left quadrant that wouldn't go away. I went to my family care dr in March and she told me it was probably just a muscular problem. Told me to take Ibuprofen and wait it out. In late May I woke up with terrible pain. I went to the walk-in clinic and the dr thought it was my gallbladder. Blood was drawn and he scheduled a gallbladder ultrasound the next day. The next day I was still in pain, went for my gallbladder ultrasound and stopped by the walk-in clinic because the dr asked me to do so. He came out immediately and told me he had been looking for me everywhere, called me, my parents, called the local hospitals because he thought surely I had been admitted. My amalyse and lipase levels were off the charts. He said it was " possible " that I had pancretitis. Sent me home told me to eat a no fat diet and wait to improve. Things did not improve. I couldn't eat or drink anything without vomiting. I went to see my family care dr again. My regular dr was now gone and I was assigned to a new resident. He advised me to stop taking some medication that I was taking and set up a CT scan. I was found to have a cyst a little larger then a golf ball on the tail of my pancreas. In the meanwhile he told me that I was to go to the ER immediately if I didnt feel well. Well the ER knows me by name now. I have been there at least a dozen times through this all. The ER dr ordered a hydascan to yet again test my gallbladder. Nothing. I was finally admitted in mid July. I could no longer function at home, I had dropped out of school for the summer, and I couldn't work. I was put on demerol to manage my pain-I felt wonderful. I had my first consult with a GI dr. I had another CT scan, a general endoscopy of my stomach/pancreas, MRI, and total barium studies. I wanted the cyst drained but the GI Dr. would not allow it. I was released and my problems did not end. Went back to see my family care and he set up an appointment with another GI dr. Went to see her and she said lets drain the cyst. Well the night before I was going to get it done I got so violently ill that I was in the ER yet again. I saw another GI dr and he said he wasnt going to allow me to get the drainage. He admitted me for pain control and refered me to a dr. in Milwaukee. My problems continued. I couldnt get into the dr. in Milwaukee for a month. I went down there met the dr for 5 minutes--I was a course patient for a conference. I had an endoscopic ultrasound/ERCP done. My cyst was drained, a biopsy was taken, and a stent was placed. It went very well. I felt poorly for about two days then I felt like a normal human being for about two weeks. I got sick again. Started taking pain meds to control it until my follow-up. In the meanwhile the hospital had lost the fluid and biopsy from my cyst. Wonderful. I went back for my second EUS/ERCP and stent removal. Things did not go as well this time. I had lots of pain and it really hasn't improved since. At this time he has suggested a partial removal of my pancreas pending my test results and I met with the surgeon. Well the results came back good. The cyst wasn't a mucous cyst which means it didn't need to come out immeditely. He told me that surgery was only needed if I experience more pain. Well the pain is still there, but I will not accept surgery as my only option. For the time being I am just dealing with the pain. I guess I'm just trying to take a break from the dr's and that is where I am at right now. That's my story. Angel > Angel: > > Welcome. I'm a newbie also. > > I'm sure that we all have many questions for you. > > The first few that I can think of are: > > What problems and symptoms do you have? > Who told you that it's your pancreas? > What tests have you undergone? > How are you being treated? > > -E Quote Share this post Link to post Share on other sites
