Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Puestow Procedure Hi, My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. Many Many thanks Neale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Puestow Procedure Hi, My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. Many Many thanks Neale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Puestow Procedure Hi, My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. Many Many thanks Neale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Puestow Procedure Hi, My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. Many Many thanks Neale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Puestow Procedure > > > Hi, > My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. > I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. > > Many Many thanks > Neale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Puestow Procedure > > > Hi, > My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. > I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. > > Many Many thanks > Neale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Hi, Neale. Three years ago I went in to have a Puestow and ended up with a Whipple. They found there was much more damage than they had expected and had to remove 3/4 of my pancreas. I can relate what my GI doc told me about the Puestow procedure. In his words a Puestow procedure is where they filet the pancreas in a butterfly manner, cut open the small intestine and graft the pancreas to the intestine so that the pancreatic secretions drain directly into the small intestine. A Whipple is where they remove the diseased portion of the pancreas, part of the stomach and a portion of the small intestine and all of the gall bladder, hopefully being able to save the pylorus (the valve controlling the flow from the stomach to the small intestine) and the duodenum (the first portion of the small intestine where the acidity of the sludge flowing in is neutralized). I was told it is very difficult to do a Whipple once the Puestow's has been done so if there is significant deterioration in the pancreas they may choose to do a Whipple instead. Since mine was so far gone they made the call to just resect the damaged portion via the Whipple. The Puestow is far less traumatic for your body. It is by far the better surgery if the amount of damage already done to your pancreas is relatively small. It has a much lower set of complications than other pancreatic surgeries. If you have enough undamaged pancreas and you are not already diabetic you should check into the total pancreatectomy with islet cell autotransplant before you proceed. It is still considered experimental by many insurance companies (including mine - Aetna US Healthcare) but the transplant provides us with hope for being pain free and insulin independent. Good luck to you, Neale. I wish you the best. Chuck. At 10:21 PM 7/4/2002 -0700, you wrote: > Puestow Procedure > > > Hi, > My name is Neale and I am 42 I have had chronic Pancreatitis > since I was Seventeen. I have had every single test and exam possible. In > fact I have lost count of the number of times I been admitted to hospital > and of course the ercps that go with them, they found I have an atropic > Pancreas basically my Pancreas is stone, I am lucky only about ercps one > third of the ercps brought on an attack. I will never get used to living > with the constant pain even after 25yrs it still can be acomplete > nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and > Duragesic patches + norco for breakthrough pain and compazine and all the > diarrhea that goes with it. Now that I have given my brief history this > is where I need you help I had my last ercp 4 weeks ago and they > found that two of my main ducts are blocked and I need major surgery > this is is called a PUESTOW PROCEDURE of which I know nothing about apart > from which I looked up o n the internet, My weight is very very low and > this is heriditory (they think) as my father died from PC last year. >I would gladly welcome any help as I am getting quite desperate. If >anybody out ther has had a Puestow Procedure then could you please tell me >what to expect and what difference has it made to you. > >Many Many thanks >Neale Chuck Sullivan chuck@... " When in command, Take charge. When faced with a decision, do what is right. Nothing else matters. " - Gen. Norman Schwarzkopf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Hi, Neale. Three years ago I went in to have a Puestow and ended up with a Whipple. They found there was much more damage than they had expected and had to remove 3/4 of my pancreas. I can relate what my GI doc told me about the Puestow procedure. In his words a Puestow procedure is where they filet the pancreas in a butterfly manner, cut open the small intestine and graft the pancreas to the intestine so that the pancreatic secretions drain directly into the small intestine. A Whipple is where they remove the diseased portion of the pancreas, part of the stomach and a portion of the small intestine and all of the gall bladder, hopefully being able to save the pylorus (the valve controlling the flow from the stomach to the small intestine) and the duodenum (the first portion of the small intestine where the acidity of the sludge flowing in is neutralized). I was told it is very difficult to do a Whipple once the Puestow's has been done so if there is significant deterioration in the pancreas they may choose to do a Whipple instead. Since mine was so far gone they made the call to just resect the damaged portion via the Whipple. The Puestow is far less traumatic for your body. It is by far the better surgery if the amount of damage already done to your pancreas is relatively small. It has a much lower set of complications than other pancreatic surgeries. If you have enough undamaged pancreas and you are not already diabetic you should check into the total pancreatectomy with islet cell autotransplant before you proceed. It is still considered experimental by many insurance companies (including mine - Aetna US Healthcare) but the transplant provides us with hope for being pain free and insulin independent. Good luck to you, Neale. I wish you the best. Chuck. At 10:21 PM 7/4/2002 -0700, you wrote: > Puestow Procedure > > > Hi, > My name is Neale and I am 42 I have had chronic Pancreatitis > since I was Seventeen. I have had every single test and exam possible. In > fact I have lost count of the number of times I been admitted to hospital > and of course the ercps that go with them, they found I have an atropic > Pancreas basically my Pancreas is stone, I am lucky only about ercps one > third of the ercps brought on an attack. I will never get used to living > with the constant pain even after 25yrs it still can be acomplete > nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and > Duragesic patches + norco for breakthrough pain and compazine and all the > diarrhea that goes with it. Now that I have given my brief history this > is where I need you help I had my last ercp 4 weeks ago and they > found that two of my main ducts are blocked and I need major surgery > this is is called a PUESTOW PROCEDURE of which I know nothing about apart > from which I looked up o n the internet, My weight is very very low and > this is heriditory (they think) as my father died from PC last year. >I would gladly welcome any help as I am getting quite desperate. If >anybody out ther has had a Puestow Procedure then could you please tell me >what to expect and what difference has it made to you. > >Many Many thanks >Neale Chuck Sullivan chuck@... " When in command, Take charge. When faced with a decision, do what is right. Nothing else matters. " - Gen. Norman Schwarzkopf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 In a message dated 7/5/02 1:22:21 AM Eastern Daylight Time, njsinclair@... writes: > . > I would gladly welcome any help as I am getting quite desperate. If anybody > out ther has had a Puestow Procedure then could you please tell me what to > expect and what difference has it made to you. > > Many Many thanks > Neale > > > Hi Neale, I was being stinted useing larger stints every few months prepareing for the peustow surgery. I had pancreas divisum. The stints didn't relieve my pain so I called the surgery off. The doctor who was stinting my small duct and trying to get it large enough to slit it and slit the intestines and then connect the two so the pancreas would drain right into the small duct and not have to pass thru the small duct told my husband after my last stint and it was a large stint that I would continue to have pain. He told my husband that I would need pain blocks and since I knew that they are not very successful I declined the peustow surgery. I did some research and found the answer for me. I found out about Dr. Sutherland in Minneapolis, MN and his surgery to remove the whole pancreas and transplant the islets into the liver so I would not be a diabetic. You are probably a diabetic already so you would not have islets to transplant. Some people have their pancreases removed to eliminate the pain and then consetrate on being a diabetic. Dr. Sutherland says that it is much easier to live with diabetes than to live with chronic pancreatitis. I had my pancreatectomy and auto islet cell transplant Dec. 8, 2000. I now can eat all that I want and anything that I want. I am pain free and I suffered from pancreas pain from 1985. I am so thankful that I found out about the surgery when I did because I know that I was going to die soon without it. I could not eat anything. I was starving and having all of the illnesses that go along with chronic pancreatitis. I will give you Dr. Sutherland's Web site to read, his e-mail address, his secretary's e-mail address and Sue Rebello's Story. Sue's Story is the way I found out about the surgery done in MN by Dr. Sutherland. Shirley Dr. Sutherland's e-mail address is dsuther@... Dr. Sutherland's secretary's e-mail address is papas001@... Sue's e-mail address is srislets6597@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 In a message dated 7/5/02 1:22:21 AM Eastern Daylight Time, njsinclair@... writes: > . > I would gladly welcome any help as I am getting quite desperate. If anybody > out ther has had a Puestow Procedure then could you please tell me what to > expect and what difference has it made to you. > > Many Many thanks > Neale > > > Hi Neale, I was being stinted useing larger stints every few months prepareing for the peustow surgery. I had pancreas divisum. The stints didn't relieve my pain so I called the surgery off. The doctor who was stinting my small duct and trying to get it large enough to slit it and slit the intestines and then connect the two so the pancreas would drain right into the small duct and not have to pass thru the small duct told my husband after my last stint and it was a large stint that I would continue to have pain. He told my husband that I would need pain blocks and since I knew that they are not very successful I declined the peustow surgery. I did some research and found the answer for me. I found out about Dr. Sutherland in Minneapolis, MN and his surgery to remove the whole pancreas and transplant the islets into the liver so I would not be a diabetic. You are probably a diabetic already so you would not have islets to transplant. Some people have their pancreases removed to eliminate the pain and then consetrate on being a diabetic. Dr. Sutherland says that it is much easier to live with diabetes than to live with chronic pancreatitis. I had my pancreatectomy and auto islet cell transplant Dec. 8, 2000. I now can eat all that I want and anything that I want. I am pain free and I suffered from pancreas pain from 1985. I am so thankful that I found out about the surgery when I did because I know that I was going to die soon without it. I could not eat anything. I was starving and having all of the illnesses that go along with chronic pancreatitis. I will give you Dr. Sutherland's Web site to read, his e-mail address, his secretary's e-mail address and Sue Rebello's Story. Sue's Story is the way I found out about the surgery done in MN by Dr. Sutherland. Shirley Dr. Sutherland's e-mail address is dsuther@... Dr. Sutherland's secretary's e-mail address is papas001@... Sue's e-mail address is srislets6597@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 In a message dated 7/5/02 1:22:21 AM Eastern Daylight Time, njsinclair@... writes: > . > I would gladly welcome any help as I am getting quite desperate. If anybody > out ther has had a Puestow Procedure then could you please tell me what to > expect and what difference has it made to you. > > Many Many thanks > Neale > > > Hi Neale, Dr. Sutherland's web site is http://www.insulinfree.org/isletcenters/fairview.htm Dr. Sutherland's web site http://www.Diabetesinstitute.org/ Dr. Sutherland's phone number is (612)625-7600 Sue Rebello's web site is http://www.insulin-free.org/stories/rebello.htm Neale, Dr. Sutherland is very nice and so kind. He will be happy to answer your e-mail. Most people either e-mail him or call him and tell him their condition and he will tell you if you are a candidate for the pancreatectomy. I decided on the pancreatectomy and islet cell transplant because I wanted to be sure to have my painful pancreas removed and then I would no longer have to have pain and go through the peustow surgery for nothing. I hope that this information is of some help to you. If I can give you anymore help please write to me anytime. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 In a message dated 7/5/02 1:22:21 AM Eastern Daylight Time, njsinclair@... writes: > . > I would gladly welcome any help as I am getting quite desperate. If anybody > out ther has had a Puestow Procedure then could you please tell me what to > expect and what difference has it made to you. > > Many Many thanks > Neale > > > Hi Neale, Dr. Sutherland's web site is http://www.insulinfree.org/isletcenters/fairview.htm Dr. Sutherland's web site http://www.Diabetesinstitute.org/ Dr. Sutherland's phone number is (612)625-7600 Sue Rebello's web site is http://www.insulin-free.org/stories/rebello.htm Neale, Dr. Sutherland is very nice and so kind. He will be happy to answer your e-mail. Most people either e-mail him or call him and tell him their condition and he will tell you if you are a candidate for the pancreatectomy. I decided on the pancreatectomy and islet cell transplant because I wanted to be sure to have my painful pancreas removed and then I would no longer have to have pain and go through the peustow surgery for nothing. I hope that this information is of some help to you. If I can give you anymore help please write to me anytime. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 I had surgery jan 2000. I was to have puestow but when they opened me up I was worse then they thought. I ended up having Duval surgery its called. The tail of my pancreas was removed then the spleen had nothing to be attached to so that was removed, gallbladder was removed. The doc then connected/brought up loop of intestines and connected it to my pancreas (making a dorsal duct) so I drain out of both ends now. My ducts are horribly too small so for 2 years I was okay but then scar tissue formed and I have been having problems the last couple months. I just underwent stent placement in one of the ducts (couldnt get to the dorsal duct) to open the scar tissue blockage. Good luck with your surgery. ask your doc what he/she will do if they find any more damage when opened up? > > Puestow Procedure > > > Hi, > My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. > I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. > > Many Many thanks > Neale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 I had surgery jan 2000. I was to have puestow but when they opened me up I was worse then they thought. I ended up having Duval surgery its called. The tail of my pancreas was removed then the spleen had nothing to be attached to so that was removed, gallbladder was removed. The doc then connected/brought up loop of intestines and connected it to my pancreas (making a dorsal duct) so I drain out of both ends now. My ducts are horribly too small so for 2 years I was okay but then scar tissue formed and I have been having problems the last couple months. I just underwent stent placement in one of the ducts (couldnt get to the dorsal duct) to open the scar tissue blockage. Good luck with your surgery. ask your doc what he/she will do if they find any more damage when opened up? > > Puestow Procedure > > > Hi, > My name is Neale and I am 42 I have had chronic Pancreatitis since I was Seventeen. I have had every single test and exam possible. In fact I have lost count of the number of times I been admitted to hospital and of course the ercps that go with them, they found I have an atropic Pancreas basically my Pancreas is stone, I am lucky only about ercps one third of the ercps brought on an attack. I will never get used to living with the constant pain even after 25yrs it still can be acomplete nightmare. I am on all the usual meds Oramorph 30mg 4 times a day and Duragesic patches + norco for breakthrough pain and compazine and all the diarrhea that goes with it. Now that I have given my brief history this is where I need you help I had my last ercp 4 weeks ago and they found that two of my main ducts are blocked and I need major surgery this is is called a PUESTOW PROCEDURE of which I know nothing about apart from which I looked up on the internet, My weight is very very low and this is heriditory (they think) as my father died from PC last year. > I would gladly welcome any help as I am getting quite desperate. If anybody out ther has had a Puestow Procedure then could you please tell me what to expect and what difference has it made to you. > > Many Many thanks > Neale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Hi, all. I just joined today. I have been dealing with chronic pancreatits and related illnesses since February, 1999. They took my gallbladder out first - no luck; sphincter of oddi dysfunction next; ERCP after ERCP, billiary stent, pancreatic duct stents, yada.. yada.. yada!! The last ERCP was unsuccessful, as my pancreatic duct was completely shut. I had my second child six months ago, and was in the hospital quite a bit during that. My doctor feels that those " flare ups " during my pregnancy just progressed the CP and caused the duct to close. I am on my fourth case of CP since my baby was born as we speak. I have an MRI at the end of the month and an appointment with my doctor the next day to discuss the Puestow procedure, as he says that this is the only method of long-term relief that is available to me (in my situation). I have a six year old who, bless his heart, only has memories of Mommy being sick. My husband is an angel on earth, as he has been my rock through all of this! I have tried extremely hard over the past years to be strong and tough for my family. I am beginning to grow tired of that role. I am becoming increasingly more scared of what lies ahead for me. I try so hard to just keep these feelings to myself, because my husband just worries so much about me. Has anyone had this procedure, and, if so, what has it done for you, how did you do after surgery, etc? I am sitting at work, waiting for the pain to get worse as normal. I am sure of where I'll be this evening - lying in the ER with an IV and pain medication being pushed to me. Thanks for any info and support. Quote Link to comment Share on other sites More sharing options...
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