Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Hope this finds you all doing better than the day before. It's tough to ask for more than that. I had a very rough 10 days. Heading into last weekend I had a relatively small acute attack. Two and a half days of surging pain, cramps, diarrhea and nausea. This was way above my normal end-stage CP daily pain. It wasn't quite bad enough to dig out the old Sandostatin sledgehammer but I was thinking about it quite often. Fortunately, it eased up after a couple of days. The bad thing about the acute attack is that it kicked up my daily pain level a notch. My baseline pain is now well above the level my pain meds cover. I managed to make it all the way to Saturday morning when my wife found me sitting on the floor of my study crying, clutching my abdomen and rocking back and forth mumbling " I am so scared. I just can't handle this " . I really don't know what pushed me over the edge but it had taken so much of my mind and energy for the whole week that I just kind of snapped. Fortunately is just wonderful. She got someone from my Pain Management doc's office on the phone and got an OK to take additional doses of Hydrocodone and a standing order to get my butt to the ER for a shot of Morphine whenever I need it. I had gotten comfortable and maybe complacent in regards to my level of pain medication. I was able to get through most days without too much difficulty and thought I could go on forever like this. I learned you cannot take this disease for granted. Every one of these little attacks continues to do additional damage. I have so little undamaged pancreas after the Whipple in 1999 that the result of even a little attack is devastating. After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. How about you? Chuck 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 August 25, 2002 Report Share Posted August 25, 2002 >>>>Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. Yes Chuck, there have been a few days where I have taken several bottles of Tylox, Lortabs,and Demerol. I still ended up in the hospital before nightfall. This lead to 4 years of daily heroin. All in doctors orders. Something that has caused me the worst few days of my life this week. I just do not know where you go after that. I hope to downgrade some. I think may be this thing may take care of itself and burn out. That is my goal now, burn it and live to enjoy it. >>>>bad enough to dig out the old Sandostatin sledgehammer Chuck, watch the sandostatin buddy. It can go very wrong. It drops your weight and sends you straight to diabetes. It is an experimental drug that I am opposed to. If you have good findings with it and would suppy me with some chemical details, this may change my mind. I hope the newest formula is better than that of 1994. FOR YOU!!! v When faced with a decision, do what is right v. Nothing else at all matters. " > Hope this finds you all doing better than the day before. It's tough to > ask for more than that. > > I had a very rough 10 days. Heading into last weekend I had a relatively > small acute attack. > I really don't know what pushed me over the edge but it had taken so much > of my mind and energy for the whole week that I just kind of > snapped. Fortunately is just wonderful. She got someone from my > Pain Management doc's office on the phone and got an OK to take additional > doses of Hydrocodone and a standing order to get my butt to the ER for a > shot of Morphine whenever I need it. > > I had gotten comfortable and maybe complacent in regards to my level of > pain medication. I was able to get through most days without too much > difficulty and thought I could go on forever like this. I learned you > cannot take this disease for granted. Every one of these little attacks > continues to do additional damage. I have so little undamaged pancreas > after the Whipple in 1999 that the result of even a little attack is > devastating. > > After so much of my whining here please let me ask a question of the folks > that also are end-stage. Do you find yourself in the same mode where every > attack turns up your daily base level pain another notch? It sure does > seem like that is the way mine has worked for the last 2 years or so. > > How about you? > > Chuck > > Chuck Sullivan > chuck@s... > > " 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 August 25, 2002 Report Share Posted August 25, 2002 >>>>Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. Yes Chuck, there have been a few days where I have taken several bottles of Tylox, Lortabs,and Demerol. I still ended up in the hospital before nightfall. This lead to 4 years of daily heroin. All in doctors orders. Something that has caused me the worst few days of my life this week. I just do not know where you go after that. I hope to downgrade some. I think may be this thing may take care of itself and burn out. That is my goal now, burn it and live to enjoy it. >>>>bad enough to dig out the old Sandostatin sledgehammer Chuck, watch the sandostatin buddy. It can go very wrong. It drops your weight and sends you straight to diabetes. It is an experimental drug that I am opposed to. If you have good findings with it and would suppy me with some chemical details, this may change my mind. I hope the newest formula is better than that of 1994. FOR YOU!!! v When faced with a decision, do what is right v. Nothing else at all matters. " > Hope this finds you all doing better than the day before. It's tough to > ask for more than that. > > I had a very rough 10 days. Heading into last weekend I had a relatively > small acute attack. > I really don't know what pushed me over the edge but it had taken so much > of my mind and energy for the whole week that I just kind of > snapped. Fortunately is just wonderful. She got someone from my > Pain Management doc's office on the phone and got an OK to take additional > doses of Hydrocodone and a standing order to get my butt to the ER for a > shot of Morphine whenever I need it. > > I had gotten comfortable and maybe complacent in regards to my level of > pain medication. I was able to get through most days without too much > difficulty and thought I could go on forever like this. I learned you > cannot take this disease for granted. Every one of these little attacks > continues to do additional damage. I have so little undamaged pancreas > after the Whipple in 1999 that the result of even a little attack is > devastating. > > After so much of my whining here please let me ask a question of the folks > that also are end-stage. Do you find yourself in the same mode where every > attack turns up your daily base level pain another notch? It sure does > seem like that is the way mine has worked for the last 2 years or so. > > How about you? > > Chuck > > Chuck Sullivan > chuck@s... > > " 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 August 25, 2002 Report Share Posted August 25, 2002 >>>>Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. Yes Chuck, there have been a few days where I have taken several bottles of Tylox, Lortabs,and Demerol. I still ended up in the hospital before nightfall. This lead to 4 years of daily heroin. All in doctors orders. Something that has caused me the worst few days of my life this week. I just do not know where you go after that. I hope to downgrade some. I think may be this thing may take care of itself and burn out. That is my goal now, burn it and live to enjoy it. >>>>bad enough to dig out the old Sandostatin sledgehammer Chuck, watch the sandostatin buddy. It can go very wrong. It drops your weight and sends you straight to diabetes. It is an experimental drug that I am opposed to. If you have good findings with it and would suppy me with some chemical details, this may change my mind. I hope the newest formula is better than that of 1994. FOR YOU!!! v When faced with a decision, do what is right v. Nothing else at all matters. " > Hope this finds you all doing better than the day before. It's tough to > ask for more than that. > > I had a very rough 10 days. Heading into last weekend I had a relatively > small acute attack. > I really don't know what pushed me over the edge but it had taken so much > of my mind and energy for the whole week that I just kind of > snapped. Fortunately is just wonderful. She got someone from my > Pain Management doc's office on the phone and got an OK to take additional > doses of Hydrocodone and a standing order to get my butt to the ER for a > shot of Morphine whenever I need it. > > I had gotten comfortable and maybe complacent in regards to my level of > pain medication. I was able to get through most days without too much > difficulty and thought I could go on forever like this. I learned you > cannot take this disease for granted. Every one of these little attacks > continues to do additional damage. I have so little undamaged pancreas > after the Whipple in 1999 that the result of even a little attack is > devastating. > > After so much of my whining here please let me ask a question of the folks > that also are end-stage. Do you find yourself in the same mode where every > attack turns up your daily base level pain another notch? It sure does > seem like that is the way mine has worked for the last 2 years or so. > > How about you? > > Chuck > > Chuck Sullivan > chuck@s... > > " 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 August 26, 2002 Report Share Posted August 26, 2002 To - good going. Thank you for taking the time to respond to Chuck. I am proud of you To Chuck - please take care and I hope this week will bring some less painful days. I will keep you both in my prayers. Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 To - good going. Thank you for taking the time to respond to Chuck. I am proud of you To Chuck - please take care and I hope this week will bring some less painful days. I will keep you both in my prayers. Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Chuck, I find that with every attack, no matter how big or small, there is change in my pain. It seems to last longer with each one, and the pain meds seem to do less and less to control it. I also notice different things too... like the uncontrollable diareah, that doesn't care if you aren't quite to the bathroom... oh heck it doesn't even care if you are home. And the nausea that makes your hair stand on end because you get so clammy from it. It makes your skin feel greasy with sweat and turns you a scary shade of death (as my son says). My sugar runs the gamut when I am in an attack too... as does my body temp. I can only imagine what my blood pressure is doing. (Oh she hurting again... let see how high we can get!!!) My hands and feet are swollen so I know its doing something. Oh and lets not forget how wonderful everything smells when you can't eat it. Even the cat food smelled good today... hows that for gross? I was asked on Saturday what lengths I would go to to get rid of this pain..by one of my bosses clients (a pain management doctor) after I told him about the gastric bypass... I told him that if my GI says he thinks it might help...then I am willing to take whatever risk might be involved. He said that the celiac block could help me better... so I asked him if he did the EUS guided block, he didn't even know what I was talking about! And he's been doing this for many, many years! Ok.. I'm not THAT desparate! I am so glad that you guys are here... I have been a whiney pain in the butt all weekend and no one has complained... except my kids, lol. Thank you all for that. I hope that this new day brings everyone pain relief... {{{HUGZ and Prayers}}} Chuck Sullivan wrote: After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. How about you? Chuck --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Chuck, I find that with every attack, no matter how big or small, there is change in my pain. It seems to last longer with each one, and the pain meds seem to do less and less to control it. I also notice different things too... like the uncontrollable diareah, that doesn't care if you aren't quite to the bathroom... oh heck it doesn't even care if you are home. And the nausea that makes your hair stand on end because you get so clammy from it. It makes your skin feel greasy with sweat and turns you a scary shade of death (as my son says). My sugar runs the gamut when I am in an attack too... as does my body temp. I can only imagine what my blood pressure is doing. (Oh she hurting again... let see how high we can get!!!) My hands and feet are swollen so I know its doing something. Oh and lets not forget how wonderful everything smells when you can't eat it. Even the cat food smelled good today... hows that for gross? I was asked on Saturday what lengths I would go to to get rid of this pain..by one of my bosses clients (a pain management doctor) after I told him about the gastric bypass... I told him that if my GI says he thinks it might help...then I am willing to take whatever risk might be involved. He said that the celiac block could help me better... so I asked him if he did the EUS guided block, he didn't even know what I was talking about! And he's been doing this for many, many years! Ok.. I'm not THAT desparate! I am so glad that you guys are here... I have been a whiney pain in the butt all weekend and no one has complained... except my kids, lol. Thank you all for that. I hope that this new day brings everyone pain relief... {{{HUGZ and Prayers}}} Chuck Sullivan wrote: After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. How about you? Chuck --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Hi Chuck It's a tough disease this dam cp!! Just when you think you got it by the scruff of the neck it turns round and whallops you. I know what you mean about kicking up the pain levels. It's the whole process of needing more meds that is tough, then there are the increase in side effects that you have probably got pretty well under control on you current dose. Do you think it's because when things move up another level you have a really tangible sign that your disease has just taken one more step ands thats what makes this seem never ending?? I remember my GI saying he thought my panc may eventually burn itself out and thinking at the time.. what an odd way to descibe what was happening to me. AFter the last couple of years I wish it would happen sooner rather than later. Thats probably silly but there is more than one day of every week when I contemplate just having the whole thing removed!!!In fact I could have done it quite cheerfully with a knife myself on Saturday. LOL Racing down to the ER for a top up of Morphine because you are in pain sounds pretty smart to me!!! I hope you get some rest and comfort soon. sounds wonderful..a supportive partner makes all the difference!!! hang in there Chuck Take care Brett > Hope this finds you all doing better than the day before. It's tough to > ask for more than that. > > I had a very rough 10 days. Heading into last weekend I had a relatively > small acute attack. Two and a half days of surging pain, cramps, diarrhea > and nausea. This was way above my normal end-stage CP daily pain. It > wasn't quite bad enough to dig out the old Sandostatin sledgehammer but I > was thinking about it quite often. Fortunately, it eased up after a couple > of days. > > The bad thing about the acute attack is that it kicked up my daily pain > level a notch. My baseline pain is now well above the level my pain meds > cover. I managed to make it all the way to Saturday morning when my wife > found me sitting on the floor of my study crying, clutching my abdomen and > rocking back and forth mumbling " I am so scared. I just can't handle this " . > > I really don't know what pushed me over the edge but it had taken so much > of my mind and energy for the whole week that I just kind of > snapped. Fortunately is just wonderful. She got someone from my > Pain Management doc's office on the phone and got an OK to take additional > doses of Hydrocodone and a standing order to get my butt to the ER for a > shot of Morphine whenever I need it. > > I had gotten comfortable and maybe complacent in regards to my level of > pain medication. I was able to get through most days without too much > difficulty and thought I could go on forever like this. I learned you > cannot take this disease for granted. Every one of these little attacks > continues to do additional damage. I have so little undamaged pancreas > after the Whipple in 1999 that the result of even a little attack is > devastating. > > After so much of my whining here please let me ask a question of the folks > that also are end-stage. Do you find yourself in the same mode where every > attack turns up your daily base level pain another notch? It sure does > seem like that is the way mine has worked for the last 2 years or so. > > How about you? > > Chuck > > Chuck Sullivan > chuck@s... > > " 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 August 26, 2002 Report Share Posted August 26, 2002 Hi Chuck It's a tough disease this dam cp!! Just when you think you got it by the scruff of the neck it turns round and whallops you. I know what you mean about kicking up the pain levels. It's the whole process of needing more meds that is tough, then there are the increase in side effects that you have probably got pretty well under control on you current dose. Do you think it's because when things move up another level you have a really tangible sign that your disease has just taken one more step ands thats what makes this seem never ending?? I remember my GI saying he thought my panc may eventually burn itself out and thinking at the time.. what an odd way to descibe what was happening to me. AFter the last couple of years I wish it would happen sooner rather than later. Thats probably silly but there is more than one day of every week when I contemplate just having the whole thing removed!!!In fact I could have done it quite cheerfully with a knife myself on Saturday. LOL Racing down to the ER for a top up of Morphine because you are in pain sounds pretty smart to me!!! I hope you get some rest and comfort soon. sounds wonderful..a supportive partner makes all the difference!!! hang in there Chuck Take care Brett > Hope this finds you all doing better than the day before. It's tough to > ask for more than that. > > I had a very rough 10 days. Heading into last weekend I had a relatively > small acute attack. Two and a half days of surging pain, cramps, diarrhea > and nausea. This was way above my normal end-stage CP daily pain. It > wasn't quite bad enough to dig out the old Sandostatin sledgehammer but I > was thinking about it quite often. Fortunately, it eased up after a couple > of days. > > The bad thing about the acute attack is that it kicked up my daily pain > level a notch. My baseline pain is now well above the level my pain meds > cover. I managed to make it all the way to Saturday morning when my wife > found me sitting on the floor of my study crying, clutching my abdomen and > rocking back and forth mumbling " I am so scared. I just can't handle this " . > > I really don't know what pushed me over the edge but it had taken so much > of my mind and energy for the whole week that I just kind of > snapped. Fortunately is just wonderful. She got someone from my > Pain Management doc's office on the phone and got an OK to take additional > doses of Hydrocodone and a standing order to get my butt to the ER for a > shot of Morphine whenever I need it. > > I had gotten comfortable and maybe complacent in regards to my level of > pain medication. I was able to get through most days without too much > difficulty and thought I could go on forever like this. I learned you > cannot take this disease for granted. Every one of these little attacks > continues to do additional damage. I have so little undamaged pancreas > after the Whipple in 1999 that the result of even a little attack is > devastating. > > After so much of my whining here please let me ask a question of the folks > that also are end-stage. Do you find yourself in the same mode where every > attack turns up your daily base level pain another notch? It sure does > seem like that is the way mine has worked for the last 2 years or so. > > How about you? > > Chuck > > Chuck Sullivan > chuck@s... > > " 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 August 26, 2002 Report Share Posted August 26, 2002 << After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. >> Dear Chuck, I hope that I can offer a glimmer of hope here... My pain level worked the way that you described for almost EXACTLY two years. And after about that long in burnout stage, I seem to have leveled off. (This is me, knocking on wood.) My base pain level has not changed now for about that long, and it's just been a matter of finding the right medication to handle the pain. I believe I've finally found a combination that both mostly handles (not eliminates) the pain, but also allows me to stay functional and coherent. I feel very fortunate. Thankfully, too, I've been able to stay out of the ER for over three months now and not had to suffer much at home more than a couple times, and neither time for more than I could bare. So maybe we're at similar places, and that " two year mark " holds some hope. Perhaps it's just a coincidence, I don't know. I hope you can hang in there just a little longer... Of course I do know that everybody is different - but for me, that's about how long it's been for burnout to actually feel some degree of actual PAIN burnout. And in the meantime, if you've got your doc's okay and thumbs up to get to the ER for some additional help - and you NEED it - get thee to the darn ER and take advantage of that help! I know it's awful to have to go there and be subjected to their BS... but having your PCP or GI or PM doc's okay and ready-sign-off surely makes all the difference in the world - congratulations on THAT one. Keep posting Chuck, I'll be paying close attention to your progress. Good luck. Peace, Terry in KC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Chuck, I have found out that over the past two years, whenever I have an attack that my daily pain level does goes up. I have a medtronic morphine inplanted pain pump to control my daily pain and then break-thru meds too. WHen I'm having an attack they turn up my pain pump another notch( just like Emeril does) and then when it settles down they can't turn it back down or I'm in worse pain. I just got my medicals from my local GI doc and found out that I'm in end-stage CP, and he thinks it will burn itself out, but this can't happen soon enough for me. I really don't think I ever will. They first told me it takes 5-10 years, then 10-15 years, now it 10-20 years and after 12 1/2 years it still going as strong as even. I hope by now that you are feeling better. Take Care, Louie in WV Condition deteriorating Hope this finds you all doing better than the day before. It's tough to ask for more than that. I had a very rough 10 days. Heading into last weekend I had a relatively small acute attack. Two and a half days of surging pain, cramps, diarrhea and nausea. This was way above my normal end-stage CP daily pain. It wasn't quite bad enough to dig out the old Sandostatin sledgehammer but I was thinking about it quite often. Fortunately, it eased up after a couple of days. The bad thing about the acute attack is that it kicked up my daily pain level a notch. My baseline pain is now well above the level my pain meds cover. I managed to make it all the way to Saturday morning when my wife found me sitting on the floor of my study crying, clutching my abdomen and rocking back and forth mumbling " I am so scared. I just can't handle this " . I really don't know what pushed me over the edge but it had taken so much of my mind and energy for the whole week that I just kind of snapped. Fortunately is just wonderful. She got someone from my Pain Management doc's office on the phone and got an OK to take additional doses of Hydrocodone and a standing order to get my butt to the ER for a shot of Morphine whenever I need it. I had gotten comfortable and maybe complacent in regards to my level of pain medication. I was able to get through most days without too much difficulty and thought I could go on forever like this. I learned you cannot take this disease for granted. Every one of these little attacks continues to do additional damage. I have so little undamaged pancreas after the Whipple in 1999 that the result of even a little attack is devastating. After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. How about you? Chuck 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 August 27, 2002 Report Share Posted August 27, 2002 Chuck, I have found out that over the past two years, whenever I have an attack that my daily pain level does goes up. I have a medtronic morphine inplanted pain pump to control my daily pain and then break-thru meds too. WHen I'm having an attack they turn up my pain pump another notch( just like Emeril does) and then when it settles down they can't turn it back down or I'm in worse pain. I just got my medicals from my local GI doc and found out that I'm in end-stage CP, and he thinks it will burn itself out, but this can't happen soon enough for me. I really don't think I ever will. They first told me it takes 5-10 years, then 10-15 years, now it 10-20 years and after 12 1/2 years it still going as strong as even. I hope by now that you are feeling better. Take Care, Louie in WV Condition deteriorating Hope this finds you all doing better than the day before. It's tough to ask for more than that. I had a very rough 10 days. Heading into last weekend I had a relatively small acute attack. Two and a half days of surging pain, cramps, diarrhea and nausea. This was way above my normal end-stage CP daily pain. It wasn't quite bad enough to dig out the old Sandostatin sledgehammer but I was thinking about it quite often. Fortunately, it eased up after a couple of days. The bad thing about the acute attack is that it kicked up my daily pain level a notch. My baseline pain is now well above the level my pain meds cover. I managed to make it all the way to Saturday morning when my wife found me sitting on the floor of my study crying, clutching my abdomen and rocking back and forth mumbling " I am so scared. I just can't handle this " . I really don't know what pushed me over the edge but it had taken so much of my mind and energy for the whole week that I just kind of snapped. Fortunately is just wonderful. She got someone from my Pain Management doc's office on the phone and got an OK to take additional doses of Hydrocodone and a standing order to get my butt to the ER for a shot of Morphine whenever I need it. I had gotten comfortable and maybe complacent in regards to my level of pain medication. I was able to get through most days without too much difficulty and thought I could go on forever like this. I learned you cannot take this disease for granted. Every one of these little attacks continues to do additional damage. I have so little undamaged pancreas after the Whipple in 1999 that the result of even a little attack is devastating. After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. How about you? Chuck 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 August 27, 2002 Report Share Posted August 27, 2002 Chuck, I have found out that over the past two years, whenever I have an attack that my daily pain level does goes up. I have a medtronic morphine inplanted pain pump to control my daily pain and then break-thru meds too. WHen I'm having an attack they turn up my pain pump another notch( just like Emeril does) and then when it settles down they can't turn it back down or I'm in worse pain. I just got my medicals from my local GI doc and found out that I'm in end-stage CP, and he thinks it will burn itself out, but this can't happen soon enough for me. I really don't think I ever will. They first told me it takes 5-10 years, then 10-15 years, now it 10-20 years and after 12 1/2 years it still going as strong as even. I hope by now that you are feeling better. Take Care, Louie in WV Condition deteriorating Hope this finds you all doing better than the day before. It's tough to ask for more than that. I had a very rough 10 days. Heading into last weekend I had a relatively small acute attack. Two and a half days of surging pain, cramps, diarrhea and nausea. This was way above my normal end-stage CP daily pain. It wasn't quite bad enough to dig out the old Sandostatin sledgehammer but I was thinking about it quite often. Fortunately, it eased up after a couple of days. The bad thing about the acute attack is that it kicked up my daily pain level a notch. My baseline pain is now well above the level my pain meds cover. I managed to make it all the way to Saturday morning when my wife found me sitting on the floor of my study crying, clutching my abdomen and rocking back and forth mumbling " I am so scared. I just can't handle this " . I really don't know what pushed me over the edge but it had taken so much of my mind and energy for the whole week that I just kind of snapped. Fortunately is just wonderful. She got someone from my Pain Management doc's office on the phone and got an OK to take additional doses of Hydrocodone and a standing order to get my butt to the ER for a shot of Morphine whenever I need it. I had gotten comfortable and maybe complacent in regards to my level of pain medication. I was able to get through most days without too much difficulty and thought I could go on forever like this. I learned you cannot take this disease for granted. Every one of these little attacks continues to do additional damage. I have so little undamaged pancreas after the Whipple in 1999 that the result of even a little attack is devastating. After so much of my whining here please let me ask a question of the folks that also are end-stage. Do you find yourself in the same mode where every attack turns up your daily base level pain another notch? It sure does seem like that is the way mine has worked for the last 2 years or so. How about you? Chuck 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.