Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 I was wondering if members of this group think there are many people out there who have had problems with their pancreas - such as acute pancreatitis, or SOD or pancreas divisium who have had successful procedures done and we never hear from them because they are going on with their lives. Debbie in Mich Debbie, These questions have come to me many times, also, and I still haven't found any factual answers. I think most of the people you see here on a daily, weekly or monthly basis are those who have developed chronic pancreatitis and it has become an ongoing problem. We have a lot of people that join after an acute attack that stay around for a while and then fade away, and it's my hope that for those people that one attack was it, and they recovered and the chronic condition never became a part of their lives. I think there are a lot of success stories out there in that regard. And then we've had members who had surgery done to correct certain problems with their individual condition, Rob and Bobby are two that come to mind, that recovered well and apparently aren't having difficulty anymore, so they've stopped posting. Rob did drop in a few times after his successful surgery, which was good to hear about, especially since it helped him, and we got to hear about it. So I definetely feel there are success stories after surgery, too. But I've never been able to find any good statistics to support this. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative Pancreatitis Association, Intl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 In a message dated 10/16/02 9:46:47 PM Eastern Daylight Time, CJWatts88@... writes: > Me too Carole, and thanks for your story. I wish you continued success Best wishes, Poncho - GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 > I was wondering if members of this group think there are many people out > there who have had problems with their pancreas - such as acute pancreatitis, > or SOD or pancreas divisium who have had successful procedures done and we > never hear from them because they are going on with their lives. I know > everyone is different - but are people on this list the minority who have > ongoing problems - or does the majority of people who have been touched by > pancreatitis have ongoing lifelong problems? I have just been thinking about > this and the percentages given when a procedure is done (such as my Gi said > 10% of people develop Acute Pancreatitis from the ERCP) so, more people don't > develop it as do? > Or maybe the statistics we are given are off. > Debbie in Mich > > Hi Debbie, My name is Carole and I have had ongoing problems with my Pancreas starting in 1986 with Acute Pancreatitis with a pseudocyst on the tail of my pancreas. I had surgery in 1986 to drain the pseudocyst into my stomach because the cyst kept growing. I did okay after the surgery and able to eat although a few years later, I started having problems again with the same type of pain I had before only not as severe or as often. I kept going back to my doctor and he always told me it wasn't my pancreas because my amylase and lipse levels were normal even though I kept insisting the pain was the same and always when I ate. The pain kept getting worse as time went on and finally and my left side became very tender to touch. My PCP ordered an Ultrasound and found another growth on the tail of my Pancreas. After reviewing the Ultrasound, my Gastroenterologist finally agreed the pain was coming from my Pancreas. I immediately started doing my own research and found this group and learned more than I was ever told by my doctor. For over a year, I had repeated CAT Scans and MRI and MRCP to keep check on the growth hoping it would shrink although with the daily pain I was having and the need for pain medication every day, I knew it wasn't shrinking. My surgeon scheduled me for a Distal Pancreatectomy with removal of the Spleen on May 9th, 2001. I asked my surgeon if he would consider only removing the portion of the tail needed to remove the growth and only remove my Spleen if he didn't have another choice. Believe it or not, he listened and on that day, he performed a Partial Pancreatectomy instead of a Distal and was able to remove the rare tumor (thought to be a pseudocyst from the CT Scans) without having to remove my Spleen. With all the scans of the growth he had reviewed before my surgery, he was very surprised to find a tumor rather than another Pseudocyst and was pleased we hadn't waited any longer since the tumor was already the size of a baseball. It never seemed to show that large in the scans. I am still able to eat without pain and do not require any pain medication although I still take Creon to help with digestion only because I'm afraid not to if that makes any sense. I feel I am one of the success stories and I feel very blessed. I will forever be grateful to my friends here who helped me through a very long and difficult year and a half. I honestly feel I wouldn't be where I am today if it weren't for the people here who are always eager to give their love, support, compassion, understanding, prayers and a wealth of information. Can you imagine the people who are praying for you that you have never met? I believe in prayers and I do believe in miracles. The question is will I ever have another problem with my Pancreas? I certainly pray that I won't but the reality is I could....there are no promises. Since I just turned 60 and have three beautiful grandchildren, I have been trying to make up for lost time. I don't post as I did in the past but I do try to read the posts from time to time and this group will forever be in my daily prayers. I wish everyone could be pain free and hope some day there will be a cure for all conditions pertaining to the Pancreas and for more Pancreas Specialists or doctors who are more compassionate and knowledgeable when dealing with patients with Pancreatitis. Good luck Debbie, welcome to all the new members....Hello to all my old friends and God bless you all. If I can help anyone, please let me know. I am no longer with AOL. Here are my new e-mail addresses: CJWatts88@... or CJWatts8@... Hugs & Prayers, Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 > I was wondering if members of this group think there are many people out > there who have had problems with their pancreas - such as acute pancreatitis, > or SOD or pancreas divisium who have had successful procedures done and we > never hear from them because they are going on with their lives. I know > everyone is different - but are people on this list the minority who have > ongoing problems - or does the majority of people who have been touched by > pancreatitis have ongoing lifelong problems? I have just been thinking about > this and the percentages given when a procedure is done (such as my Gi said > 10% of people develop Acute Pancreatitis from the ERCP) so, more people don't > develop it as do? > Or maybe the statistics we are given are off. > Debbie in Mich > > Hi Debbie, My name is Carole and I have had ongoing problems with my Pancreas starting in 1986 with Acute Pancreatitis with a pseudocyst on the tail of my pancreas. I had surgery in 1986 to drain the pseudocyst into my stomach because the cyst kept growing. I did okay after the surgery and able to eat although a few years later, I started having problems again with the same type of pain I had before only not as severe or as often. I kept going back to my doctor and he always told me it wasn't my pancreas because my amylase and lipse levels were normal even though I kept insisting the pain was the same and always when I ate. The pain kept getting worse as time went on and finally and my left side became very tender to touch. My PCP ordered an Ultrasound and found another growth on the tail of my Pancreas. After reviewing the Ultrasound, my Gastroenterologist finally agreed the pain was coming from my Pancreas. I immediately started doing my own research and found this group and learned more than I was ever told by my doctor. For over a year, I had repeated CAT Scans and MRI and MRCP to keep check on the growth hoping it would shrink although with the daily pain I was having and the need for pain medication every day, I knew it wasn't shrinking. My surgeon scheduled me for a Distal Pancreatectomy with removal of the Spleen on May 9th, 2001. I asked my surgeon if he would consider only removing the portion of the tail needed to remove the growth and only remove my Spleen if he didn't have another choice. Believe it or not, he listened and on that day, he performed a Partial Pancreatectomy instead of a Distal and was able to remove the rare tumor (thought to be a pseudocyst from the CT Scans) without having to remove my Spleen. With all the scans of the growth he had reviewed before my surgery, he was very surprised to find a tumor rather than another Pseudocyst and was pleased we hadn't waited any longer since the tumor was already the size of a baseball. It never seemed to show that large in the scans. I am still able to eat without pain and do not require any pain medication although I still take Creon to help with digestion only because I'm afraid not to if that makes any sense. I feel I am one of the success stories and I feel very blessed. I will forever be grateful to my friends here who helped me through a very long and difficult year and a half. I honestly feel I wouldn't be where I am today if it weren't for the people here who are always eager to give their love, support, compassion, understanding, prayers and a wealth of information. Can you imagine the people who are praying for you that you have never met? I believe in prayers and I do believe in miracles. The question is will I ever have another problem with my Pancreas? I certainly pray that I won't but the reality is I could....there are no promises. Since I just turned 60 and have three beautiful grandchildren, I have been trying to make up for lost time. I don't post as I did in the past but I do try to read the posts from time to time and this group will forever be in my daily prayers. I wish everyone could be pain free and hope some day there will be a cure for all conditions pertaining to the Pancreas and for more Pancreas Specialists or doctors who are more compassionate and knowledgeable when dealing with patients with Pancreatitis. Good luck Debbie, welcome to all the new members....Hello to all my old friends and God bless you all. If I can help anyone, please let me know. I am no longer with AOL. Here are my new e-mail addresses: CJWatts88@... or CJWatts8@... Hugs & Prayers, Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 > I was wondering if members of this group think there are many people out > there who have had problems with their pancreas - such as acute pancreatitis, > or SOD or pancreas divisium who have had successful procedures done and we > never hear from them because they are going on with their lives. I know > everyone is different - but are people on this list the minority who have > ongoing problems - or does the majority of people who have been touched by > pancreatitis have ongoing lifelong problems? I have just been thinking about > this and the percentages given when a procedure is done (such as my Gi said > 10% of people develop Acute Pancreatitis from the ERCP) so, more people don't > develop it as do? > Or maybe the statistics we are given are off. > Debbie in Mich > > Hi Debbie, My name is Carole and I have had ongoing problems with my Pancreas starting in 1986 with Acute Pancreatitis with a pseudocyst on the tail of my pancreas. I had surgery in 1986 to drain the pseudocyst into my stomach because the cyst kept growing. I did okay after the surgery and able to eat although a few years later, I started having problems again with the same type of pain I had before only not as severe or as often. I kept going back to my doctor and he always told me it wasn't my pancreas because my amylase and lipse levels were normal even though I kept insisting the pain was the same and always when I ate. The pain kept getting worse as time went on and finally and my left side became very tender to touch. My PCP ordered an Ultrasound and found another growth on the tail of my Pancreas. After reviewing the Ultrasound, my Gastroenterologist finally agreed the pain was coming from my Pancreas. I immediately started doing my own research and found this group and learned more than I was ever told by my doctor. For over a year, I had repeated CAT Scans and MRI and MRCP to keep check on the growth hoping it would shrink although with the daily pain I was having and the need for pain medication every day, I knew it wasn't shrinking. My surgeon scheduled me for a Distal Pancreatectomy with removal of the Spleen on May 9th, 2001. I asked my surgeon if he would consider only removing the portion of the tail needed to remove the growth and only remove my Spleen if he didn't have another choice. Believe it or not, he listened and on that day, he performed a Partial Pancreatectomy instead of a Distal and was able to remove the rare tumor (thought to be a pseudocyst from the CT Scans) without having to remove my Spleen. With all the scans of the growth he had reviewed before my surgery, he was very surprised to find a tumor rather than another Pseudocyst and was pleased we hadn't waited any longer since the tumor was already the size of a baseball. It never seemed to show that large in the scans. I am still able to eat without pain and do not require any pain medication although I still take Creon to help with digestion only because I'm afraid not to if that makes any sense. I feel I am one of the success stories and I feel very blessed. I will forever be grateful to my friends here who helped me through a very long and difficult year and a half. I honestly feel I wouldn't be where I am today if it weren't for the people here who are always eager to give their love, support, compassion, understanding, prayers and a wealth of information. Can you imagine the people who are praying for you that you have never met? I believe in prayers and I do believe in miracles. The question is will I ever have another problem with my Pancreas? I certainly pray that I won't but the reality is I could....there are no promises. Since I just turned 60 and have three beautiful grandchildren, I have been trying to make up for lost time. I don't post as I did in the past but I do try to read the posts from time to time and this group will forever be in my daily prayers. I wish everyone could be pain free and hope some day there will be a cure for all conditions pertaining to the Pancreas and for more Pancreas Specialists or doctors who are more compassionate and knowledgeable when dealing with patients with Pancreatitis. Good luck Debbie, welcome to all the new members....Hello to all my old friends and God bless you all. If I can help anyone, please let me know. I am no longer with AOL. Here are my new e-mail addresses: CJWatts88@... or CJWatts8@... Hugs & Prayers, Carole > Quote Link to comment Share on other sites More sharing options...
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