Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Itis not typically associated with PSC, although some members have chronicpancreatitis, not obviously related. I am one of those that have chronic pancreatitis and I have been told that it is a direct result of PSC. I was told when I was diagnosed that PSC can affect the pancreas and gall bladder, but doesn't always. In my case it caused both to fail. The narrowing in the duct extended to my pancreas and gall bladder and was the reason for gall bladder removal in 2004. My pancreas, we discovered in 1997, had suffered severe damage leaving me with chronic pancreatitis due to the scaring of the ducts. The narrowing has always been so severe that they have never been able to even place a stent so they go in periodically and cut it open -- in fact I think I'm about due for more "maintenance." I don't think I am the norm, but I'm not the first to get chronic pancreatitis due to PSC. I just thought I'd share. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 I'll give my best laymans description of pancreatitis as it relates to us PSC folk. During an ERCP, something agitates the pancreatic duct. And for a time after the procedure, not everything is flowing very smoothly yet, which can allow bacteria to settle in. When you have normal flow, the bacteria in your system which is always there stays confined to the digestive tract. This combined with the irritation from the ERCP can allow an infection. Now, here's where it gets tricky. You have to prevent further irritation, unfortunately, the pancreas secretes some digestive enzymes, which only further irritates the damage, making it worse. The only way for it to heal is to " shut down " that part of the pancreas' function. How do we do that? We don't eat until the numbers are good again. I can't speak for the rest of you, but my experience with pancreatitis has been a miserable cuss of a time. People try to sympathize with you by saying that they know what pain is like and I have to tell them. " NO, there is pain... and then there is pancreatitis' bring a grown man to uncontrollable tears, hunched over praying for death to come soon, just to make it stop! " My last bout of pancreatitis came in April '05, after an ERCP to dilate the bile duct and I was DISCHARGED that afternoon. 40 miles down the road, my mom was driving and I'm in the car crying, we were at the halfway point between 2 hospitals, so I had to suck it up for another 45 miles before I could get admitted and finally get some pain relief. Then they put a tube in my stomach to eliminate any digestive triggers (food). And they only used morphine. Anyone who ever tells you how powerful of a painkiller morphine is, never had pancreatitis. It barely dented the pain, it took a shot of hydromorphone to eliminate the pain. > > I also had pancreatitis after my first ERCP and was NPO for over a > > week. Fever was the least of my concerns. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 I'll give my best laymans description of pancreatitis as it relates to us PSC folk. During an ERCP, something agitates the pancreatic duct. And for a time after the procedure, not everything is flowing very smoothly yet, which can allow bacteria to settle in. When you have normal flow, the bacteria in your system which is always there stays confined to the digestive tract. This combined with the irritation from the ERCP can allow an infection. Now, here's where it gets tricky. You have to prevent further irritation, unfortunately, the pancreas secretes some digestive enzymes, which only further irritates the damage, making it worse. The only way for it to heal is to " shut down " that part of the pancreas' function. How do we do that? We don't eat until the numbers are good again. I can't speak for the rest of you, but my experience with pancreatitis has been a miserable cuss of a time. People try to sympathize with you by saying that they know what pain is like and I have to tell them. " NO, there is pain... and then there is pancreatitis' bring a grown man to uncontrollable tears, hunched over praying for death to come soon, just to make it stop! " My last bout of pancreatitis came in April '05, after an ERCP to dilate the bile duct and I was DISCHARGED that afternoon. 40 miles down the road, my mom was driving and I'm in the car crying, we were at the halfway point between 2 hospitals, so I had to suck it up for another 45 miles before I could get admitted and finally get some pain relief. Then they put a tube in my stomach to eliminate any digestive triggers (food). And they only used morphine. Anyone who ever tells you how powerful of a painkiller morphine is, never had pancreatitis. It barely dented the pain, it took a shot of hydromorphone to eliminate the pain. > > I also had pancreatitis after my first ERCP and was NPO for over a > > week. Fever was the least of my concerns. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 I'll give my best laymans description of pancreatitis as it relates to us PSC folk. During an ERCP, something agitates the pancreatic duct. And for a time after the procedure, not everything is flowing very smoothly yet, which can allow bacteria to settle in. When you have normal flow, the bacteria in your system which is always there stays confined to the digestive tract. This combined with the irritation from the ERCP can allow an infection. Now, here's where it gets tricky. You have to prevent further irritation, unfortunately, the pancreas secretes some digestive enzymes, which only further irritates the damage, making it worse. The only way for it to heal is to " shut down " that part of the pancreas' function. How do we do that? We don't eat until the numbers are good again. I can't speak for the rest of you, but my experience with pancreatitis has been a miserable cuss of a time. People try to sympathize with you by saying that they know what pain is like and I have to tell them. " NO, there is pain... and then there is pancreatitis' bring a grown man to uncontrollable tears, hunched over praying for death to come soon, just to make it stop! " My last bout of pancreatitis came in April '05, after an ERCP to dilate the bile duct and I was DISCHARGED that afternoon. 40 miles down the road, my mom was driving and I'm in the car crying, we were at the halfway point between 2 hospitals, so I had to suck it up for another 45 miles before I could get admitted and finally get some pain relief. Then they put a tube in my stomach to eliminate any digestive triggers (food). And they only used morphine. Anyone who ever tells you how powerful of a painkiller morphine is, never had pancreatitis. It barely dented the pain, it took a shot of hydromorphone to eliminate the pain. > > I also had pancreatitis after my first ERCP and was NPO for over a > > week. Fever was the least of my concerns. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 People try to sympathize with you by saying that they know what pain is like and I have to tell them. " NO, there is pain... and then there is pancreatitis' bring a grown man to uncontrollable tears, hunched over praying for death to come soon, just to make it stop! " ... > Anyone who ever tells you how powerful of a painkiller morphine is, never had pancreatitis. It barely dented the pain, it took a shot of hydromorphone to eliminate the pain. Aubrey - Please help with this if you can! In my experience as RN, Nurse Practitioner, pain management is not simple. Depending on the person and the circumstances, controlling pain, while trying to not inflict other problems, can be very challenging. Yet, controlling pain is an absolutely necessary, important goal - as has described so well. The medical professionals - both doctors and nurses should be working with patient & family to WORK as hard as is necessary to find ways to relief pain and prevent suffering. Pain is not always just controlled with " pain medicine " . Other medicines can augment pain control, plus all the comfort measures (warm blankets, ice, massage, etc) should be utilized to try to manage pain. Pain management is not a hopeless task - if your pain is not controlled - speak up. Family members are really helpful and should not be shy about speaking up! Joanne (, Ca) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 People try to sympathize with you by saying that they know what pain is like and I have to tell them. " NO, there is pain... and then there is pancreatitis' bring a grown man to uncontrollable tears, hunched over praying for death to come soon, just to make it stop! " ... > Anyone who ever tells you how powerful of a painkiller morphine is, never had pancreatitis. It barely dented the pain, it took a shot of hydromorphone to eliminate the pain. Aubrey - Please help with this if you can! In my experience as RN, Nurse Practitioner, pain management is not simple. Depending on the person and the circumstances, controlling pain, while trying to not inflict other problems, can be very challenging. Yet, controlling pain is an absolutely necessary, important goal - as has described so well. The medical professionals - both doctors and nurses should be working with patient & family to WORK as hard as is necessary to find ways to relief pain and prevent suffering. Pain is not always just controlled with " pain medicine " . Other medicines can augment pain control, plus all the comfort measures (warm blankets, ice, massage, etc) should be utilized to try to manage pain. Pain management is not a hopeless task - if your pain is not controlled - speak up. Family members are really helpful and should not be shy about speaking up! Joanne (, Ca) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 People try to sympathize with you by saying that they know what pain is like and I have to tell them. " NO, there is pain... and then there is pancreatitis' bring a grown man to uncontrollable tears, hunched over praying for death to come soon, just to make it stop! " ... > Anyone who ever tells you how powerful of a painkiller morphine is, never had pancreatitis. It barely dented the pain, it took a shot of hydromorphone to eliminate the pain. Aubrey - Please help with this if you can! In my experience as RN, Nurse Practitioner, pain management is not simple. Depending on the person and the circumstances, controlling pain, while trying to not inflict other problems, can be very challenging. Yet, controlling pain is an absolutely necessary, important goal - as has described so well. The medical professionals - both doctors and nurses should be working with patient & family to WORK as hard as is necessary to find ways to relief pain and prevent suffering. Pain is not always just controlled with " pain medicine " . Other medicines can augment pain control, plus all the comfort measures (warm blankets, ice, massage, etc) should be utilized to try to manage pain. Pain management is not a hopeless task - if your pain is not controlled - speak up. Family members are really helpful and should not be shy about speaking up! Joanne (, Ca) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Amen to that.... Barbara Doyle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Amen to that.... Barbara Doyle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 > > " NO, there is pain... and then there is pancreatitis' bring a grown > man to uncontrollable tears, hunched over praying for death to come > soon, just to make it stop! " That is what I remember about my pancreatitis, too. That, and the nasogastric tube they inserted to feed me before they decided on surgery. I've never forgiven the poor Fellow that put that into me. Thanks for the apt description of such a horrible thing to go through. When they FINALLY decided on surgery all I could think was " What the @#$% took you so long! " The day after surgery was like heaven even though I was full of tubes and drains and staples to feed me and drain the psuedocysts in my abdomen. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Barbara Fatigue/ NO stamina, yeh me too! Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 I notice you have " Stage 3 " i nyour list .. is that PSC stage 3 and what does that mean ... I'm new to all this and don't have a " stage " yet as far as I know .. well, I guess I have one, but don't know what it is! thanks barbara in Md psc 1998, chronic pancreatitis, diabetes > > Barbara > > Fatigue/ NO stamina, yeh me too! > > Best > jd, 45 > UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 > Southern, IL > 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.