Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 , i wanted to welcome you to the group. So sorry you are having problems with pancreatitis like the rest of us though. It took many years before I got a diagnosis of chronic pancreatitis and I have acute attacks about once a year since 1986 (though I did have a five year break after surgery on my pancreas). They diagnosed mine by changes to the duct. If you look at the following website, it is very good about explaining acute and chronic pancreatitis. It's the Hopkin's GI website. http://hopkins-gi.org/subspecialties/acutepancreas/ and http://hopkins-gi/subspecialties/chronic/ For doctor recommendations, go to the database section of the yahoo groups website for this group and it has a list of doctor recommendations. Hopefully there are some for Michigan. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Thanks Rob, You may have opened a can of worms by telling me to ask more questions..LOL...I do that alot. What kind of pain do you get? Is it just the middle abdominal pain that is present all of the time? Or do you get " attack " of pain? I get these " attacks " that are the most intense pain. In the past it has been caused by a blocked duct. It seems that now I am getting them without the duct being blocked. I had two the first night in the hospital after my last ERCP and my doc said it was a spasm of the pancreatic duct most likely. Well, this week I have had 3 and he doesn't know what to tell me. Could these spasms be caused by the pancreas? I also have been having problems with more left side pain and diarrhea ever since the last ERCP. My stools have been anything but normal (I know...nice conversation...but I have to ask someone). I have been reading and it seems people get diarrhea from pancreatitis. I also have lost 20 lbs in the past 2 months. I think the stools and the weight loss are from the pancreas not breaking down the fats. What do you think? I told you I could ask some questions. What a relef to ask someone who won't look at me like I am nuts. Thanks again, > , > I too was diagnosed with Sphincter of oddi dysfunction. which the > doc at johns hopkins thought was causing my attacks. They cut the muscle and > it helped for a while. However I now have a stricture that completely blocks > tha pancreatic duct, along with chronic pancreatitus. From what I've been > told by The GI docs and what I've read the only way to check for chronic is > to do a CT scan, I guess maybe an MRI would also work. At this point my > blood levals are not elevated because my pancreas is " burned out " . So if > they tell you the blood test are fine, you still could have chronic panc. If > you have any more questions let me know if I can help. > Rob > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Kimber, Thank you for your reply. I will check out the web sites. Any information I can get really helps. What are your acute attacks like? Are you hospitalized for long? What other symptoms do you have the rest of the year? I am trying to figure out what is going on with me and if I fit the mold of chronic pancreatits before I go through any more tests. Did you ever get severe " attacks " of pain that come on suddenly and can last for hours? Thanks for you help, > , > i wanted to welcome you to the group. So sorry you are having problems > with pancreatitis like the rest of us though. > It took many years before I got a diagnosis of chronic pancreatitis and > I have acute attacks about once a year since 1986 (though I did have a > five year break after surgery on my pancreas). They diagnosed mine by > changes to the duct. If you look at the following website, it is very > good about explaining acute and chronic pancreatitis. It's the > Hopkin's GI website. > http://hopkins-gi.org/subspecialties/acutepancreas/ and > http://hopkins-gi/subspecialties/chronic/ > > For doctor recommendations, go to the database section of the yahoo > groups website for this group and it has a list of doctor > recommendations. Hopefully there are some for Michigan. > Kimber > > -- > Kimber > > hominid2@c... > > California State Chapter Representative > > Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 hi denise, this is michelle and i do not think you are nuts! pancreatitis is so complicated there are so many unknown factors. however, i too had some of your symptoms. during my first pregnancy my pancreacitis stayed at its worst..i was hospitalized forever! after my baby was induced my dr's waited for me to recover somewhat and then my surgeon removed my gallbladder.. after that i too had diarrhea. after 3 months of pain from this in addition to my pancreas, i told my gi dr.. she immediatedly put my on 2 different pills.... levbid 2 times a day and levitian which is a sublingual version of the levbid. it saved me both from the cramps of diarrhea and the pancreatic spasms. this pain is very intense but different from the " attacks " .. i get them frequently, they don't last too long. anyway, i pop one of those pills sublingually and within 5 minutes my pain is greatly reduced. i no longer have problems with bowel or cramping just the chronic pancreatitis same-ole stuff. i hope this is helpful to you.. stay well michelle in georgia --- dunayczan@... wrote: > Thanks Rob, > You may have opened a can of worms by telling me to > ask more > questions..LOL...I do that alot. > What kind of pain do you get? Is it just the middle > abdominal pain > that is present all of the time? Or do you get > " attack " of pain? I > get these " attacks " that are the most intense pain. > In the past it > has been caused by a blocked duct. It seems that now > I am getting > them without the duct being blocked. I had two the > first night in the > hospital after my last ERCP and my doc said it was a > spasm of the > pancreatic duct most likely. Well, this week I have > had 3 and he > doesn't know what to tell me. Could these spasms be > caused by the > pancreas? I also have been having problems with more > left side pain > and diarrhea ever since the last ERCP. My stools > have been anything > but normal (I know...nice conversation...but I have > to ask someone). > I have been reading and it seems people get diarrhea > from > pancreatitis. I also have lost 20 lbs in the past 2 > months. I think > the stools and the weight loss are from the pancreas > not breaking > down the fats. What do you think? > I told you I could ask some questions. What a relef > to ask someone > who won't look at me like I am nuts. > Thanks again, > > > > > > > > > , > > I too was diagnosed with Sphincter of > oddi dysfunction. > which the > > doc at johns hopkins thought was causing my > attacks. They cut the > muscle and > > it helped for a while. However I now have a > stricture that > completely blocks > > tha pancreatic duct, along with chronic > pancreatitus. From what > I've been > > told by The GI docs and what I've read the only > way to check for > chronic is > > to do a CT scan, I guess maybe an MRI would also > work. At this > point my > > blood levals are not elevated because my pancreas > is " burned out " . > So if > > they tell you the blood test are fine, you still > could have chronic > panc. If > > you have any more questions let me know if I can > help. > > Rob > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 hi denise, this is michelle and i do not think you are nuts! pancreatitis is so complicated there are so many unknown factors. however, i too had some of your symptoms. during my first pregnancy my pancreacitis stayed at its worst..i was hospitalized forever! after my baby was induced my dr's waited for me to recover somewhat and then my surgeon removed my gallbladder.. after that i too had diarrhea. after 3 months of pain from this in addition to my pancreas, i told my gi dr.. she immediatedly put my on 2 different pills.... levbid 2 times a day and levitian which is a sublingual version of the levbid. it saved me both from the cramps of diarrhea and the pancreatic spasms. this pain is very intense but different from the " attacks " .. i get them frequently, they don't last too long. anyway, i pop one of those pills sublingually and within 5 minutes my pain is greatly reduced. i no longer have problems with bowel or cramping just the chronic pancreatitis same-ole stuff. i hope this is helpful to you.. stay well michelle in georgia --- dunayczan@... wrote: > Thanks Rob, > You may have opened a can of worms by telling me to > ask more > questions..LOL...I do that alot. > What kind of pain do you get? Is it just the middle > abdominal pain > that is present all of the time? Or do you get > " attack " of pain? I > get these " attacks " that are the most intense pain. > In the past it > has been caused by a blocked duct. It seems that now > I am getting > them without the duct being blocked. I had two the > first night in the > hospital after my last ERCP and my doc said it was a > spasm of the > pancreatic duct most likely. Well, this week I have > had 3 and he > doesn't know what to tell me. Could these spasms be > caused by the > pancreas? I also have been having problems with more > left side pain > and diarrhea ever since the last ERCP. My stools > have been anything > but normal (I know...nice conversation...but I have > to ask someone). > I have been reading and it seems people get diarrhea > from > pancreatitis. I also have lost 20 lbs in the past 2 > months. I think > the stools and the weight loss are from the pancreas > not breaking > down the fats. What do you think? > I told you I could ask some questions. What a relef > to ask someone > who won't look at me like I am nuts. > Thanks again, > > > > > > > > > , > > I too was diagnosed with Sphincter of > oddi dysfunction. > which the > > doc at johns hopkins thought was causing my > attacks. They cut the > muscle and > > it helped for a while. However I now have a > stricture that > completely blocks > > tha pancreatic duct, along with chronic > pancreatitus. From what > I've been > > told by The GI docs and what I've read the only > way to check for > chronic is > > to do a CT scan, I guess maybe an MRI would also > work. At this > point my > > blood levals are not elevated because my pancreas > is " burned out " . > So if > > they tell you the blood test are fine, you still > could have chronic > panc. If > > you have any more questions let me know if I can > help. > > Rob > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 , I hope you don't mind, we all kinda just jump in an answer whenever someone asks a questions, whether or not they were the one asked Anyways, you can have either diahhrea or constipation with chronic pancreatitis. I usually have constipation and it wasn't always the pain meds that did it since I've only been on the pain meds on a daily basis for the past 8 months. I used to just get an acute " attack " , where I'd get really intense pain that would last for about a week or so and I'd have to be hospitalized and when it was over, I was fine. Also, I've been doing a lot of reading up on pancreatitis and they say you can have pain in the middle or either side. That's because the pancreas is squished between all your other organs and kinda moves around a bit, so it's always shifting position within your body. Alot of the stuff says that if your pain is in the middle, it's usually the head of the pancreas causing problems and if it's either side, it's the tail of your pancreas, but some people also have both, which means it's throughout the whole organ. Hope that's of some help. If you want to look at alot more websites with information on pancreas, go to the links section of the yahoo groups website for this group. One of the really good ones is the Hopkins GI website, which covers both acute and chronic pancreatitis. http://hopkins-gi.org/subspecialties/acutepancreas/ and http://hopkins-gi.org/subspecialties/chronic/ Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 , my acute attacks are very sudden intense pain. Bad enough that I just can't think straight and my only thought is to get to the ER. My attacks usually last for about a week or week and half and I'd be on no food or water for most of that week. I'd have a constant dull pain with sharp pains that came in waves. Sometimes it radiates to the back. Since January, I've had constant daily pain. Some days it's bad, some days it mild and ignorable. Now, it's a always low dull pain and then periodic fits of sharp pain and they can last for hours. It started this way in January after my last acute attack. I guess it just finally did so much damage, the pancreas couldn't really recover enough to leave me without pain. This last attack I had diarrhea though. It was the first time that happened for me. I usually get constipated just before an attack usually. The attacks usually come about once a year, though I did have one year where I had 3 in a 3 month period and another one before that with two attacks that were only 2 days apart. Basically they released me after a week and a half and then I was back in for another week and a half. Hope this is of some help. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi , Thanks for jumping in. I would love to hear more about your pregnancies. Did you have cp before the pregnancies? What caused your cp? One of my main goals in all of this is to have more children I am 33 and I have one daughter, 4 1/2. All of my problems started when I was pregnant or right after. I still think the hormones messed up my body but no doctor will agree with me. I was so healthy before I was pregnant. I am going to see a high-risk OB to talk about the possibilities. I have been taking the Levbid and the Levsin (sublingual fast acting one) for years now. Maybe it is not working as well. I take the Levsin when I get the acute pain but sometimes I am not sure if it is the medicine or just time that makes it better. I will take a Levsin sometimes after I eat and that seems to help with the diarrhea. Did you take these when you were pregnant? My OB says that I shouldn't. Thanks for the help, > > > , > > > I too was diagnosed with Sphincter of > > oddi dysfunction. > > which the > > > doc at johns hopkins thought was causing my > > attacks. They cut the > > muscle and > > > it helped for a while. However I now have a > > stricture that > > completely blocks > > > tha pancreatic duct, along with chronic > > pancreatitus. From what > > I've been > > > told by The GI docs and what I've read the only > > way to check for > > chronic is > > > to do a CT scan, I guess maybe an MRI would also > > work. At this > > point my > > > blood levals are not elevated because my pancreas > > is " burned out " . > > So if > > > they tell you the blood test are fine, you still > > could have chronic > > panc. If > > > you have any more questions let me know if I can > > help. > > > Rob > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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