Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Dear Rhonda, I'm sorry you are going through so much at the moment. Since you are already following dietary advice, taking enzymes and pain meds, there isn't a great deal to add at the moment to improve the situation immediately. Are you taking the highest dose of enzymes allowed by your docs? I presume you have been told not to consume any alcohol at all, whatever the original cause of the CP? The only hope I can give is that this disease does go through different stages and sometimes less painful periods in life follow earlier more painful ones. I speak as someone of 58 whose first attack took place at the age of 5!! In 53 years I have gone through two very bad fairly prolonged stages painwise, as well as regular flare-ups, but am now more settled. I would hope the same for you. For some months after my diagnosis last May, I considered very seriously having a total pancreatectomy. I have hereditary pancreatitis and my form of this condition carries a high cancer risk. I can't sum up in a few words the months of research and the lengthy discussions with both my specialists (gastroenterologist and pancreatologist) which have finally led me to put this operation on the back burner for the time being. There is no doubt that it is risky and major surgery and carries the possibility of complications afterwards. On the other hand, in some cases, it does offer at least the chance of being pain-free. It's because I am going through a good phase at the moment, linked, in my view, to taking enzymes, that it has been decided that I should at least postpone a decision on the TP. The situation must be very different if one is suffering constant pain as you seem to be. I definitely think such surgery should only be undertaken in a specialist pancreatic unit by a very experienced specifically pancreatic surgeon. Research does indicate that patients treated in such units do better. I do hope you soon get the help you need or that your disease moves into a less distressing stage. Good wishes, Fliss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Dear Fliss, thank you so much for your response and well wishes. The enzymes that I take are Viokase 16 (8 with each meal/snack, whatever). They do make a difference, but it is still very painful. I would never wish this on anyone, but it is comforting to know that there are people who truly understand what I am going through. Thank you. I hope you continue to do well. Rhonda Quote Link to comment Share on other sites More sharing options...
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