Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 , I'm glad Jackie is home. I hope she continues to improve. Have you guys considered the surgery to remove the pancreas and put the islets in the liver? I e-mailed Dr. Sutherland about my case thinking that maybe he might have ideas on the cause or who I could go to. As you may remember, my case is different from most because my doctors are saying I don't have CP, but have recurring acute panc. They say the problem is adhesions blocking the bile duct. I have had only a handful of episodes where the amylase/lipase were elevated and nothing to the point where Jackie's were. I also have episodes where only the liver enzymes were elevated and many episodes with normal labs. by the way, I'm 41, so I guess I would still fall in the category of a 'young woman'. My plans are to see the surgeon my GI is sending me to on Dec 4th. If he agrees with my GI that adhesions blocking the bile duct are the probably cause, I will proceed with that surgery. If not, my next step will be to consult with Dr. Sutherland and consider the options he has presented. I know I am much older than Jackie but I think if it were my daughter in the same situation as Jackie, I would seriously consider consulting with Dr. Sutherland. Of course, that is easy for me to say since it is NOT my daughter we're talking about. W Here is the e-mail from Dr. Sutherland 11-6-02 Dear Ms Weston, Your story is complicated. You did not give your age, but your story is similar to those of others I have seen with what is called minimal change chronic pancreatitis of young women, where amylase and lipase levels are not consistently eleveated but are part of the time, and in whom ERCPs,generally show a normal appearing duct.. We have done pancraetectomy on several with this syndrome and pain has been relieved in about 80%, but there are some in whom it is not. Diabetes has been prevented by the islet autograft in most if there has been no previous direct surgery on the pancreas (about 70%), but it does mean there are about 15% who wind up diabetic and still have pain. However, it is difficult to see any other treatment options other than chronic pain management. I doubt sphincter surgery will help. A total pancreatectomy could be done to avoid possible need for further surgery, or a Whipple (partial pancreatecomy, basically the head and duodenum) could be done in which case the sphincter is removed and the bile duct attached directly to the intestine. I this releives the pain, great; if not, a completion pancreatectomy with islet autotransplant can be done. I am happy to review your records and see you in consultation, and you and your doctor can arrange a consult thorugh Ann Marie Papas in my office, . I am also happy to talk to you and your doctor. I hope we can help you. Sutherland, M.D., Ph.D. Jackie is home... Hey All, They kept Jackie overnite and we arrived home on Thanksgiving night. My phone line was down so I have to wait until it was back on to post. She did not get pancreatitis. She is in alot of pain though. But the blood work was fine. They found nothing fixable, the ducts were all open and flowing fine. Dr Cotton said there was more scarring in the duct that is consistent with chronic pancreatitis. They do not recommend anything else at this time. Her new Pediatric GI stopped in to talk...he said he agrees with pain management that he doesn't want her on narcotics. He acted like they would not send her home with any but then they wrote a script for 30 lortab. She has appts with him and her pain management doc in January if she is still in pain and they won't relieve her pain...then they are fired. Hopefully the GI will write her scripts for her other drugs, enzymes, prilosec, the pain management writes neurontin, anti-depressant to help her sleep,called trazadone...she used to be on elavil. He also writes phenagran, and Ultram for pain. I really don't care...I have a little back up on everything cuz of her not taking meds when hospitalized and other times of extreme pain and not eating she won't take enzymes etc... I heard we had a pediatric GI coming here in February...but he could be like the rest. Who knows...SO everyone pray that the pain gets light enough that ultram, advil, tylenol can control the pain. Well the pain going all the way away is a good prayer too. Well, she is still asleep this morn, had a bad night last night. She did eat yesterday, it caused a little extra pain so I don't know if she will eat today or go on clears. Hopefully today will be better than yesterday. Thanks for all of your support, thoughts and prayers. My family and I appreciate all this group is for us. I will keep you all posted on how she is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 , I'm glad Jackie is home. I hope she continues to improve. Have you guys considered the surgery to remove the pancreas and put the islets in the liver? I e-mailed Dr. Sutherland about my case thinking that maybe he might have ideas on the cause or who I could go to. As you may remember, my case is different from most because my doctors are saying I don't have CP, but have recurring acute panc. They say the problem is adhesions blocking the bile duct. I have had only a handful of episodes where the amylase/lipase were elevated and nothing to the point where Jackie's were. I also have episodes where only the liver enzymes were elevated and many episodes with normal labs. by the way, I'm 41, so I guess I would still fall in the category of a 'young woman'. My plans are to see the surgeon my GI is sending me to on Dec 4th. If he agrees with my GI that adhesions blocking the bile duct are the probably cause, I will proceed with that surgery. If not, my next step will be to consult with Dr. Sutherland and consider the options he has presented. I know I am much older than Jackie but I think if it were my daughter in the same situation as Jackie, I would seriously consider consulting with Dr. Sutherland. Of course, that is easy for me to say since it is NOT my daughter we're talking about. W Here is the e-mail from Dr. Sutherland 11-6-02 Dear Ms Weston, Your story is complicated. You did not give your age, but your story is similar to those of others I have seen with what is called minimal change chronic pancreatitis of young women, where amylase and lipase levels are not consistently eleveated but are part of the time, and in whom ERCPs,generally show a normal appearing duct.. We have done pancraetectomy on several with this syndrome and pain has been relieved in about 80%, but there are some in whom it is not. Diabetes has been prevented by the islet autograft in most if there has been no previous direct surgery on the pancreas (about 70%), but it does mean there are about 15% who wind up diabetic and still have pain. However, it is difficult to see any other treatment options other than chronic pain management. I doubt sphincter surgery will help. A total pancreatectomy could be done to avoid possible need for further surgery, or a Whipple (partial pancreatecomy, basically the head and duodenum) could be done in which case the sphincter is removed and the bile duct attached directly to the intestine. I this releives the pain, great; if not, a completion pancreatectomy with islet autotransplant can be done. I am happy to review your records and see you in consultation, and you and your doctor can arrange a consult thorugh Ann Marie Papas in my office, . I am also happy to talk to you and your doctor. I hope we can help you. Sutherland, M.D., Ph.D. Jackie is home... Hey All, They kept Jackie overnite and we arrived home on Thanksgiving night. My phone line was down so I have to wait until it was back on to post. She did not get pancreatitis. She is in alot of pain though. But the blood work was fine. They found nothing fixable, the ducts were all open and flowing fine. Dr Cotton said there was more scarring in the duct that is consistent with chronic pancreatitis. They do not recommend anything else at this time. Her new Pediatric GI stopped in to talk...he said he agrees with pain management that he doesn't want her on narcotics. He acted like they would not send her home with any but then they wrote a script for 30 lortab. She has appts with him and her pain management doc in January if she is still in pain and they won't relieve her pain...then they are fired. Hopefully the GI will write her scripts for her other drugs, enzymes, prilosec, the pain management writes neurontin, anti-depressant to help her sleep,called trazadone...she used to be on elavil. He also writes phenagran, and Ultram for pain. I really don't care...I have a little back up on everything cuz of her not taking meds when hospitalized and other times of extreme pain and not eating she won't take enzymes etc... I heard we had a pediatric GI coming here in February...but he could be like the rest. Who knows...SO everyone pray that the pain gets light enough that ultram, advil, tylenol can control the pain. Well the pain going all the way away is a good prayer too. Well, she is still asleep this morn, had a bad night last night. She did eat yesterday, it caused a little extra pain so I don't know if she will eat today or go on clears. Hopefully today will be better than yesterday. Thanks for all of your support, thoughts and prayers. My family and I appreciate all this group is for us. I will keep you all posted on how she is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 , I'm glad Jackie is home. I hope she continues to improve. Have you guys considered the surgery to remove the pancreas and put the islets in the liver? I e-mailed Dr. Sutherland about my case thinking that maybe he might have ideas on the cause or who I could go to. As you may remember, my case is different from most because my doctors are saying I don't have CP, but have recurring acute panc. They say the problem is adhesions blocking the bile duct. I have had only a handful of episodes where the amylase/lipase were elevated and nothing to the point where Jackie's were. I also have episodes where only the liver enzymes were elevated and many episodes with normal labs. by the way, I'm 41, so I guess I would still fall in the category of a 'young woman'. My plans are to see the surgeon my GI is sending me to on Dec 4th. If he agrees with my GI that adhesions blocking the bile duct are the probably cause, I will proceed with that surgery. If not, my next step will be to consult with Dr. Sutherland and consider the options he has presented. I know I am much older than Jackie but I think if it were my daughter in the same situation as Jackie, I would seriously consider consulting with Dr. Sutherland. Of course, that is easy for me to say since it is NOT my daughter we're talking about. W Here is the e-mail from Dr. Sutherland 11-6-02 Dear Ms Weston, Your story is complicated. You did not give your age, but your story is similar to those of others I have seen with what is called minimal change chronic pancreatitis of young women, where amylase and lipase levels are not consistently eleveated but are part of the time, and in whom ERCPs,generally show a normal appearing duct.. We have done pancraetectomy on several with this syndrome and pain has been relieved in about 80%, but there are some in whom it is not. Diabetes has been prevented by the islet autograft in most if there has been no previous direct surgery on the pancreas (about 70%), but it does mean there are about 15% who wind up diabetic and still have pain. However, it is difficult to see any other treatment options other than chronic pain management. I doubt sphincter surgery will help. A total pancreatectomy could be done to avoid possible need for further surgery, or a Whipple (partial pancreatecomy, basically the head and duodenum) could be done in which case the sphincter is removed and the bile duct attached directly to the intestine. I this releives the pain, great; if not, a completion pancreatectomy with islet autotransplant can be done. I am happy to review your records and see you in consultation, and you and your doctor can arrange a consult thorugh Ann Marie Papas in my office, . I am also happy to talk to you and your doctor. I hope we can help you. Sutherland, M.D., Ph.D. Jackie is home... Hey All, They kept Jackie overnite and we arrived home on Thanksgiving night. My phone line was down so I have to wait until it was back on to post. She did not get pancreatitis. She is in alot of pain though. But the blood work was fine. They found nothing fixable, the ducts were all open and flowing fine. Dr Cotton said there was more scarring in the duct that is consistent with chronic pancreatitis. They do not recommend anything else at this time. Her new Pediatric GI stopped in to talk...he said he agrees with pain management that he doesn't want her on narcotics. He acted like they would not send her home with any but then they wrote a script for 30 lortab. She has appts with him and her pain management doc in January if she is still in pain and they won't relieve her pain...then they are fired. Hopefully the GI will write her scripts for her other drugs, enzymes, prilosec, the pain management writes neurontin, anti-depressant to help her sleep,called trazadone...she used to be on elavil. He also writes phenagran, and Ultram for pain. I really don't care...I have a little back up on everything cuz of her not taking meds when hospitalized and other times of extreme pain and not eating she won't take enzymes etc... I heard we had a pediatric GI coming here in February...but he could be like the rest. Who knows...SO everyone pray that the pain gets light enough that ultram, advil, tylenol can control the pain. Well the pain going all the way away is a good prayer too. Well, she is still asleep this morn, had a bad night last night. She did eat yesterday, it caused a little extra pain so I don't know if she will eat today or go on clears. Hopefully today will be better than yesterday. Thanks for all of your support, thoughts and prayers. My family and I appreciate all this group is for us. I will keep you all posted on how she is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 In a message dated 11/29/2002 10:02:23 AM US Eastern Standard Time, swetet@... writes: > >>>They kept Jackie overnight and we arrived home on Thanksgiving night. .. > She did not get Pancreatitis. She is in a lot of pain though. But the > blood work was fine. They found nothing fixable, the ducts were all open > and flowing fine. Dr. Cotton said there was more scarring in the duct that > is consistent with chronic Pancreatitis. They do not recommend anything > else at this time. Her new Pediatric GI stopped in to talk...he said he > agrees with pain management that he doesn't want her on narcotics<<< Hi and Jackie, I am glad that you were able to get home by that night. What an ordeal you are going through. I find it heard when the doctor says they don't want a patient on narcotics, but when there is so little to offer as an alternative for effective pain management, it is frustrating. I fully support managing pain with other types of agents, also. Such as you are doing to treat any depression, anxiety, and using neurotransmitters such as Neurontin. She is a trooper. Karyn Karyn E. , RN Founder / Executive Director Pancreatitis Association International Corp. Office: Indps, IN, USA 1- Quote Link to comment Share on other sites More sharing options...
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