Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 Tara, I have found that by eliminating protein and fat from my diet has helped tremendously in my ability to eat. Those two things are probably your pancreas's worse enemy (besides alcohol, of course). Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 Andre', how do you get protein?? aren't your doctors concerned because you can't eat the majority of the time?? ACastenell@... wrote: From: ACastenell@... Tara, I have found that by eliminating protein and fat from my diet has helped tremendously in my ability to eat. Those two things are probably your pancreas's worse enemy (besides alcohol, of course). Andre' --------------------------------- Please click above to support our sponsor --------------------------------- Lynn :0) " The kindness planned for tomorrow doesn't count today. " --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Lynn, When I stated that I eat only one or two meals a week I did not include the 2 to 4 cans of Ensure I drink daily. This is my main source of Protein and other nutrients. Now that I have been diagnosed with Diabetes, I must now quit drinking Ensure due to the high sugar content and begin drinking Glucernamine (may be misspelled). Unfortunately, this product is loaded with fat (11 grams) so therefore, I am left without any replacement for my inability to eat. That brings me back to my drinking 2-4 cans of Ensure daily. This will continue until they can find another source of nutrition for me. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2000 Report Share Posted July 2, 2000 In a message dated 7/1/00 8:22:24 PM !!!First Boot!!!, shirlf3542@... writes: << I live in Cincinnati, Ohio. >> Hi Shirley, all, Shirley I noticed that you said you live in Ohio. In case you were not aware, there is a poll or survey being conducted on where we all live. Please go to URL: /polls/pancreatitis If you have problems please let me know. We are still missing about 50% of the members in participation. This survey will help everyone. Still trying, Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Hi Steve and Tammy, I have been thinking about you a lot. I am in a lot of pain today and just plain miserable. I hope you are feeling better Tammy. It makes me sad to think of you being so young and having two small children and having to go through this nightmare. I hope at least you are having some freedom from pain today. I wish I could do something for you. The trouble is with this disease I don't think anyone can help us. If only the research companies would take a real interest in pancreas research like they do with heart disease, Aids, and other terrible diseases. My doctor tells me that these companies don't even make stints for the pancreas only. A lot of the times the doctors put stints in the ducts the stints are made for hearts or kidneys. I hope I am not bringing you down. Sorry is I have. I am sad not only for myself but for all the people who suffer like we have to suffer. I want to feel better and I want to be able to eat. I am so sad. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 Hi Jang, I am having trouble reaching Andre. Do you know his E-mail address? Did he have divisium? Can you help me get in touch with him. Thank you, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 In a message dated 7/5/00 6:13:16 PM !!!First Boot!!!, shirlf3542@... writes: << I am having trouble reaching Andre. Do you know his E-mail address? Did he have divisim? Can you help me get in touch with him. >> Hi Shirley, Andre has recently returned to work and that seems to taken all his energy. I believe he tries to catch up on posts once a week. I can barely miss a day or two and I'm overwhelmed. (LOL). At any rate his address is: Acastenell@... He has Pancreatic Divsum. And would love to talk to you I am sure. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 In a message dated 7/5/00 2:50:14 PM Eastern Daylight Time, KarynWms@... writes: << Hi Shirley, Andre has recently returned to work and that seems to taken all his energy. I believe he tries to catch up on posts once a week. I can barely miss a day or two and I'm overwhelmed. (LOL). At any rate his address is: Acastenell@... >> Thanks Karyn, I really appreciate it. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 Shirley My 10-year-old son, , has been suffering with pancreatitis for over 5 years now. He recently had a permanent nerve block done. I know other people have had problems after their block, but has been well for a few months now. The procedure was done under general anasthesia in a CAT scan. The doctor used the CAT scan to guide two needles from 's spine into the area where the sympathetic nerves associated with the pancreas are located. Then they injected pure alcohol to destroy the nerves. Initially, did have some trouble that the doctors had never seen before. His digestive system was working backwards. Without putting anything at all in his stomach, we were draining hundreds of cc's of bile from his stomach. He was terribly nauseous and was vomitting. The doctors felt that because he had not eaten in over four months (he was on TPN) that his intestines and the non-sympathetic nerves, needed to readjust. This lasted for a few weeks, but since then, he has been pain-free. I know everyone reacts differently, but for us it has been a God-send, so far. Suzanne On Tue, 4 Jul 2000 20:03:43 EDT shirlf3542@... writes: > Hi I am home today with a lot of pain. I wish something could be > done for > us. Suffering like this is cruel. Has anyone had a nerve block? > What is > done when one has a nerve block? Does it help that much? Is it > major > surgery? Can anyone help me out with this? Thank you, Shirley > > ------------------------------------------------------------------------ > Free Conference Calling with Firetalk! > Click Here! > http://click./1/5480/0/_/593940/_/962755428/ > ------------------------------------------------------------------------ > > 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 July 5, 2000 Report Share Posted July 5, 2000 Hi Suzanne, I am so sorry to hear that your 10 year old son has gone through this terrible, painful disease. I know a teenage boy who has hereditary pancreatitis and the doctors collected his islet cells and injected them in his liver. They took out part of his pancreas. Lately though I have been hearing that that procedure is not working very well. With the nerve block I don't understand what is happening to the pancreas. Does the pancreas and the body still suffer the effects of a pancreatitis attack? Does the pancreas become completely damaged? Will it eventually stop putting off hormone and insulin? I have never asked a doctor exactly what it is so I am in the dark with what it does to all the organs in the body. Before I started with the stint process which prepares me for the puestow surgery the doctor ask me if I wanted to go down the surgery avenue or have a nerve block. I said that I preferred surgery at that time because I was so desperate and would do anything. I thought that surgery would really solve my pain and eating problem and nerve block would still leave me in pain. I believe now I answered to fast to the surgery. I should have ask many questions about a nerve block. Sometimes when I am at the doctors office I become emotionally messed up and afraid of what they will tell me, therefore I answer or agree to fast. I have been told some very serious things about my health in the past. Cancer of the ovary was one shock I got a few years ago. So now I find that I kind of shut down when I am at the doctor's office. I sure do hope and pray that your little son has continued relief from pain. I hope he can eat and enjoy his food. He sure does deserve it. I will keep him in my prayers. Thank you for writing me and please write again and give me all the facts of a nerve block. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 In a message dated 7/12/00 3:38:14 AM !!!First Boot!!!, shirlf3542@... writes: << Oh my Andre, you have been through hell and more. You have suffered unbelievably. Your message is very clear to me what you have lived with and what you are living with now. >> Shirley, all, I can't emphasize enough that what each of us are going through is horrible. Pancreatitis is a catastrophic disease and needs to be right up there with breast cancer, HIV, etc., in a need for intense, serious research. I have been finding more and more evidence of research, however, these all seem to be related to islet cell transfers. I am impressed that they are trying to isolate the gene for hereditary Pancreatitis to minimize the horror that young children have to go through. << I am so glad that you were honest with me and told me just what having these surgeries are all about >> Shirley, all, The members of this Network have Pancreatitis in every phase of the disease. Sometimes it is hard for Andre " , Fred, myself, and others to share due to fear of diminishing any hope newly diagnosed members may have. However, honesty is the one most important component of this Network. It's important to be able to put up boundaries when others share. It is necessary to stay focused on your disease and where it is at this time. << I am nervous, depressed, confused, desperate all the time. I cry all the time. I am a basket case. A mess. I went to a psychiatrist for help and he said that he would be scared to death too. He suggested antidepressants and tranquilizers to help me. I am all ready on low doses of those medicines and they don't help with making this decision.>> Shirley, all, I am a firm believer in mental health care. This disease affects all aspects of our well being, mental, physical, spiritual, and emotional. Decisions we have to make should be talked about with your primary care taker; the final decision rests between you and God. I personally think medications that help us from falling into the deep dark hole of depression are necessary. Again, that is a personal decision. My Psychiatrist has a best friend with Pancreatitis. My first visit when I went to see him, he as totally empathetic and honest. << Thank you and please keep in touch with me. Let me know how you are. I will be praying for you. Shirley >> Shirley, all, I think this is very important. One aspect of this Network is to allow for a forum where questions can be asked. The other aspect, is to encourage each of us to just share how a particular day has been. It is evident that we all care for one another. It is wonderful to have so many people praying for each of us. Karyn Quote Link to comment Share on other sites More sharing options...
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