Guest guest Posted May 24, 2000 Report Share Posted May 24, 2000 Makes sense. I live in Merrill, Michigan which is in Saginaw County and about twenty mile west of Saginaw. Duane Organization > I have an open suggestion to our group at large. Please take a moment to > consider it: > > What do all of you think about our group becoming organized in the sense of > noting, not so much the individual names, but the individual locations each > of us are in. I suspect we'll find that there are pockets around the > country/world where there is a higher frequency of pancreatitis. If that is > true, one would assume that the medical experts in that area would of > necessity, become more familiar with our disease. It may be valuable to some > of our group to travel out of area, in exchange for more expert medical > handling. > > Further, it may be comforting to all of us, to know there are others in our > area. It gives me some sense of well-being, for instance, when one of my > local panc buddies e-mails me. Perhaps if we knew our true strength in > numbers and frequency, we would be in a better position to lobby the medical > world for more research into pancreatitis. > > I do know that ANY group speaks with a louder voice than we all do as > individuals. > > Just a thought. If there is interest, please let me know. > > Verne > > ------------------------------------------------------------------------ > Best friends, most artistic, class clown Find 'em here: > http://click./1/4054/0/_/593940/_/959223695/ > ------------------------------------------------------------------------ > > PANCREATITIS SUPPORT NETWORK > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: Pancreatitisegroups > > To 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 May 25, 2000 Report Share Posted May 25, 2000 In a message dated 5/24/00 10:02:43 PM Central Daylight Time, VerneMc@... writes: << What do all of you think about our group becoming organized in the sense of noting, not so much the individual names, but the individual locations each of us are in. I suspect we'll find that there are pockets around the country/world where there is a higher frequency of pancreatitis. >> i agree - that is one reason why i asked everyone to please fill out their profile to at least show what state they are in. glad you are feeling better verne! debbie (arkansas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 In a message dated 5/24/00 10:25:02 PM Central Daylight Time, FRETZRICE@... writes: << However, I have been pain free for about 5 weeks now and have only vomited once since coming home from the hospital. >> that's fantastic! hope it continues for you. i always enjoy hearing about the " good times " someone has. hopefully these will continue for you for a long, long time. debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 Verne, Your idea sounds great. I also think we could speak louder in numbers. I'm new to this group and I'm trying to catch up on reading some of your posts. I had a Whipple Procedure in Aug 99. I still have the pancreatic attacks and live with constant back pain and some abdominal pain. Please let me know your story so I can relate to you when reading your posts. Thanks so much, Terri L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 In a message dated 5/25/00 7:47:10 AM Central Daylight Time, Tll619@... writes: << I had a Whipple Procedure in Aug 99. I still have the pancreatic attacks and live with constant back pain and some abdominal pain. >> terri - is your pancreatitis from a specific cause? debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 In a message dated 5/25/00 7:47:10 AM Central Daylight Time, Tll619@... writes: << I had a Whipple Procedure in Aug 99. I still have the pancreatic attacks and live with constant back pain and some abdominal pain. >> terri - is y Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Dr Coben.....Isn't he the Dr. that does the ERCP's...?? I have to go check.... I'm not really being treated for pancreatitis yet...I was admitted to the hospital with pancreatitis, but unfortunately it wasn't at Jefferson... My Gastro Dr. is Dr. Infantolino, and he's wonderful......I have a feeling Dr. Coben is in the same office as Dr. Infantolino....hmmm..I think I'll research that :-) Hope you are well, and let me know if I can help you. suz... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 In a message dated 05/27/2000 4:14:15 PM Pacific Daylight Time, QuezySue@... writes: << Dr Coben.....Isn't he the Dr. that does the ERCP's...?? >> Sue- I know Dr. Coben does endoscopic ultrasounds and I think he is the one to do ERCP's too. Has he ever done an ERCP on you? Dr. Infantilino used to be at Graduate, right? I am sure they are in the same office since both are GI docs. Keep in touch!!! -Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 Verne, This sounds great to me. I would welcome giving out this information. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 In a message dated 5/25/00 8:47:22 AM Eastern Daylight Time, Tll619@... writes: << I had a Whipple Procedure in Aug 99. >> Terri, Who performed your Whipple Procedure? I had mine done at Massachusetts General Hospital by a DR Warshaw. I too got no relief from this surgery and can only rely on pain management to control my frequent attacks. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Andre', DR Ertan is my doctor also. He's the one that did my second ERCP and more blood work...after 3 months of agonizing pain and all sorts of tests here where I live...at the time he did my ERCP he ran lots of blood work. He did the CA19-9 which showed there was a tumor somewhere in my body. Because of the weight loss and the location of the pain he knew it was my pancreas. He sent me to a surgeon 3 days later and 3 days after that I was in the hospital having the Whipple done. Once I went to DR Ertan everything went real fast. That's why I don't know much about what to expect. I didn't have a lot of time to ask questions before the surgery. They suspected it was pancreatic cancer. He has been working out of Baylor College of Medicine but as of today, June 1, he's in his own private practice in the same building. I haven't been back to see him since Jan. You're right Methodist is a very good hospital. One of the best in Houston. I had excellent care while I was there. No complaints at all. What other surgeries have you had done. When did you have the Whipple? I too hope you are having a pain free night. Terri L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 In a message dated 6/1/00 10:11:42 PM Eastern Daylight Time, Tll619@... writes: << He has been working out of Baylor College of Medicine but as of today, June 1, he's in his own private practice in the same building. I haven't been back to see him since Jan. You're right Methodist is a very good hospital. One of the best in Houston. I had excellent care while I was there. No complaints at all. What other surgeries have you had done. When did you have the Whipple? I too hope you are having a pain free night. >> DR Ertan has to be the best pancreatic diagnostician in the business. Just like you, nothing was happening in my life until he started seeing me. While he was not in favor of my surgery to correct my problem initially, his treatment plan wasn't working for me so I had to go the route of surgery. I've had my Gall Bladder removed (in 1977) and had a Thoracic Sympothectomy (remove the nerve to the pancreas). I also had several stent placements during pancreatic surgery (two to be exact) and had a Duval Procedure (opening of the pancreas to facilitate drainage). Finally I had my Whipple done in 1996 (December) and was in the hospital until mid January 1997. All of the surgeries I have mentioned were done during the 1990s. Unless they remove my pancreas completely, I will not be scheduling anymore surgery on my pancreas. I'm through :-) I hope things are going well with you today. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 In a message dated 6/11/2000 11:12:57 AM Eastern Daylight Time, Tll619@... writes: << Andre', Sorry so long in responding back to you. How are you doing since the Whipple? What meds are you on? I have developed diabetes along with all the other problems. What all were you told after surgery or even now to expect? Who did your Whipple and what doctors do you see now? Do you live in the Houston area? Sorry so many questions. I'm trying to catch up and read some of the posts. I haven't been able to get on the computer in a while. Hope you're having a good day. >> Terri, I have been much worse ever since I had my Whipple performed in December 1996. What was once a very bad illness became unbearable after my surgery. Before surgery I could eat, with sever restrictions on what and what amounts I ingested. Since my Whipple, I cannot eat anything solid (intense pain, nausea, and sometimes vomiting) and am now having difficulty drinking Ensure for the same reasons. My life has been one long hell ever since the surgery, but I still don't regret the decision I made to have it done when I did. I was at a very high risk for pancreatic cancer and tumor development was thought to have already started. Fortunately for me, this was not the case and this was supposed to reduce my chances of contracting cancer of the pancreas. Now I'm being told that this isn't the case since my condition worsened after surgery. I was not given any promises before my surgery other than the fact that 75% of his patients left surgery " pain-free, " according to my doctor. Well, as always, I am one of the unfortunate 25% who failed. Like yourself, I too have developed diabetes from the Whipple (I think) but still am not on any insulin therapy as of yet. I should be monitoring my blood sugar regularly and report any increases in my sugar levels (or decreases) but I have yet to do this. I guess I'm just being like the ostrich who sticks his head in the sand so he doesn't have to deal with what's out there. I know this isn't healthy for me, but sometimes you can only take so much bad news, you know? Currently, I am taking MS Contin (90 mg) 3 times per day for pain; MSIR for breakthrough pain (20 mg); Creon for my Enzymes; Bentil, also for digestion; Propulcid (20 mg) for digestion; Zoloft (SP) to help me sleep and deal with my constant depression; and I am supposed to take Previcid for acid buildup, but I stopped taking this once my prescription ran out and have not missed it one bit. I really hate to take pills or medicine of any kind but have found that I cannot live without these medications. I hope this message finds you in good health and feeling well. Andre' Quote Link to comment Share on other sites More sharing options...
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