Aa
Chronic Pancreatitis; Gastroparesis; IBS
I have recently (finally) been diagnosed with Chronic Pancreatitis. The diagnosis was not made until I underwent a secretin (spelling?) test in March. At that time I was told that my bicarbonate level was within normal range, but that the amount digestive enzymes I produce is well below the normal range. Unfortunately I cannot remember the amount I was told and I have not actually seen the doctor since I had the test done. I don't go back to see him until 6/17.
I have also previously been diagnosed with gastroparesis; gastritis; IBS and a small hiatal hernia. I am currently taking the following medications:
Librax (4X a day)
Nexium (40 mgs 2X a day)
Fibercon (3 pills 4X a day)
Viokase 16 (4 pills 4X a day)
Darvocet or Ultracet for the pain (Darvocet when I have a break
through attack)
Ambien (as needed)
Erythromycin (1 and 1/2 Tsp - 4X a day)
Since beginning the Viokase approximately four weeks ago I have found that I have some relief with the pain in my back and my overall day to day pain/discomfort has improved.
My question is does chronic pancreatitis eventually lead to diabetes or is it possible that only one function of the pancrease is impaired?
Any information or web pages with good research would be greatly appreciated. I have been doing research off and on for the past 9 and 1/2 months since having an acute pancreatitis attack and having my gallbladder removed. My liver and pancreas enzymes have pretty much returned to normal. My liver enzymes ocassionally run over the high end of the scale, but not by much (a few points) and my surgeon explained that it may be that I am just one of the people who fall outside the standard scale.
I have not had an abnormal blood sugar test in more than 6 years and back then it was low.
I have never been a heavy drinker. Until last June I probably had 12 drinks a year total. I have had NO alcoholic beverages since June of 2002. The doctor has told me that to the best of his knowledge my pancreatitis is ideopathic. My tryglicerides are within normal range. My trypsin level is outside the normal range, but not in the chronic range that is why I had the secretin test done.
If anyone can tell me any other possible "companion diseases/conditions" related to chronic pancreatitis I would appreciate it. I'm trying to get a better picture of what to expect in the future before I go back to the doctor so I can ask him educated questions.
THANK YOU FOR ANY ASSISTANCE.
I have also previously been diagnosed with gastroparesis; gastritis; IBS and a small hiatal hernia. I am currently taking the following medications:
Librax (4X a day)
Nexium (40 mgs 2X a day)
Fibercon (3 pills 4X a day)
Viokase 16 (4 pills 4X a day)
Darvocet or Ultracet for the pain (Darvocet when I have a break
through attack)
Ambien (as needed)
Erythromycin (1 and 1/2 Tsp - 4X a day)
Since beginning the Viokase approximately four weeks ago I have found that I have some relief with the pain in my back and my overall day to day pain/discomfort has improved.
My question is does chronic pancreatitis eventually lead to diabetes or is it possible that only one function of the pancrease is impaired?
Any information or web pages with good research would be greatly appreciated. I have been doing research off and on for the past 9 and 1/2 months since having an acute pancreatitis attack and having my gallbladder removed. My liver and pancreas enzymes have pretty much returned to normal. My liver enzymes ocassionally run over the high end of the scale, but not by much (a few points) and my surgeon explained that it may be that I am just one of the people who fall outside the standard scale.
I have not had an abnormal blood sugar test in more than 6 years and back then it was low.
I have never been a heavy drinker. Until last June I probably had 12 drinks a year total. I have had NO alcoholic beverages since June of 2002. The doctor has told me that to the best of his knowledge my pancreatitis is ideopathic. My tryglicerides are within normal range. My trypsin level is outside the normal range, but not in the chronic range that is why I had the secretin test done.
If anyone can tell me any other possible "companion diseases/conditions" related to chronic pancreatitis I would appreciate it. I'm trying to get a better picture of what to expect in the future before I go back to the doctor so I can ask him educated questions.
THANK YOU FOR ANY ASSISTANCE.
I have given up. I have had every scan out there, no resolve. I am to the point that I may have to adjust my life to with Pancreatitis the rest of my life. I am getting no where fast. Good luck to everyone else out there!!
I am not sure if your comment about the gastroparesis diagnosis was meant to mean that it was correct or not? If you do have it,
there is a medication that might also help your other symptoms. It is called domperidone. I have to order it from outside the US, because it is not sold here. However, it is a wonderful medication, and I have taken it for awhile now with good results. It helps the stomach to empty better, and helps with things like nausea, bloating, etc. I would imagine that is why you are taking the erythromycin, that is another med used to treat gastroparesis. If it is NOT working for you, ask your doctor about trying the domperidone. You may want to consider seeing a gastric motility specialist, as it can be a complex disorder, especially for someone like yourself. I have been helped a lot by joining an online support group for gastroparesis through Yahoo. Also, diet is important in treating gastroparesis. Low fat, low fiber. Those are hard for the stomach to digest. Let me know if you need more info.
there is a medication that might also help your other symptoms. It is called domperidone. I have to order it from outside the US, because it is not sold here. However, it is a wonderful medication, and I have taken it for awhile now with good results. It helps the stomach to empty better, and helps with things like nausea, bloating, etc. I would imagine that is why you are taking the erythromycin, that is another med used to treat gastroparesis. If it is NOT working for you, ask your doctor about trying the domperidone. You may want to consider seeing a gastric motility specialist, as it can be a complex disorder, especially for someone like yourself. I have been helped a lot by joining an online support group for gastroparesis through Yahoo. Also, diet is important in treating gastroparesis. Low fat, low fiber. Those are hard for the stomach to digest. Let me know if you need more info.
Toni, it saddens me to read your post. I'm so sorry to you and your husband! It is the most frustrating thing to be so ill and not be able to get any answers from the people, who are the ones that are supposed to help. My father passed away last April, after battling at least 40 years of illnesses...he eventually had to quit his job and become bed ridden. The doctors didn't know what was wrong with him either...but gave him the dx of fibromyalgia and dm2. Please don't give up on trying to get some help! He's SO young to have to live a life like nobody should. Did anybody do EGDs, CTs or ERCP? I'm definetly not a doctor, but I've had my fair share of doctor appts, tests and operations and I believe there is something that could be done to help your husband! What about nerve disorders or muscular issues? I wish you both the best of luck!!
Hey guys, I'm so glad I found this!!! I need serious help, too!! (This is really long, but please read, and help me if you can!) I've been having a lot of intestinal issues since I turned 16...I'm a 23 y/o female.
In 2008 after about 4 years of horrible chronic constipation that only allowed me to have a BM every 2 months or so...I finaly got a doctor to listen to me and did a transit test on me and found that I had severe colonic inurtia. That being said, I had to have a total abdominal colectomy, the surgeon left my rectum so no bag (thank goodness! :) ), in 2009 I had my thymus removed due to a mass on it...cracked sternum and everything, then later the same year I got a big incisional hernia from the colon removal surgery so had a hernia repair.
November 2010 I started having gallbladder attacks and they didn't have a clue why I was having painful attacks, and were so stuck on all my bowel problems that I went to the ER 3 times in a month. They did the xrays found small bowel obstructions, stuck an NG tube in, pain and nausea medicine and admitted me for 3 days until it wasn't hurting as bad anymore...anyway, in December of 2010 I was in the hospital and I had enough of the games so I asked if it could be my gallbladder since it felt a lot like people explain them, the doctor says "yeah, I guess we can check that" they do the hydascan, he comes back in and tells me that he is so shocked that I made a self diangosis, and my gallbladder was only working at 2% and no stones! I know that if they had sent me home again it wouldn't have been a whole lot longer before it would have killed me. After surgery, the surgeon said that it was black an VERY sick. Anyway, they kept me until they could do the surgery (that also incuded another hernia repair and a sm bowel biopsy) on December 23rd...I was in the hospital for about 3 1/2 weeks.
About 3 or 4 months later after I'm about fully recovered I start having very similiar, but much more painful attacks landing me in the ER again several times! My Lipase levels were levated, but didnt find this out until I went into see my GI doctor. I asked if he would do an EGD on me to find out what in the world is happening, he says he can do it, but doesn't think he will find anything and that its probably just pain from my intestines being so screwed up. He did it last week, and says he couldn't believe how much food was still in my stomach from over 12 hours before the test. He is setting up a gastroparesis test to confirm it...I had previously been on 2 out of the 3 medications to treat it. I think that I might have chronic pancreatitis...the symptoms listed on the internet almost fit me to a T. I haven't had a horrible attack in a few weeks, just smaller ones...and I know that's not a good sign either, and that could be your pancreas quit working! I know doctors don't like to do ERCPs because it could cause pancreatitis if something goes wrong, so I don't know if he will even try it!
Why are my organs shutting down?? I'm thinking maybe a rare muscle/nerve disease...please help me!!!! :( I hope you all get answers, also!
In 2008 after about 4 years of horrible chronic constipation that only allowed me to have a BM every 2 months or so...I finaly got a doctor to listen to me and did a transit test on me and found that I had severe colonic inurtia. That being said, I had to have a total abdominal colectomy, the surgeon left my rectum so no bag (thank goodness! :) ), in 2009 I had my thymus removed due to a mass on it...cracked sternum and everything, then later the same year I got a big incisional hernia from the colon removal surgery so had a hernia repair.
November 2010 I started having gallbladder attacks and they didn't have a clue why I was having painful attacks, and were so stuck on all my bowel problems that I went to the ER 3 times in a month. They did the xrays found small bowel obstructions, stuck an NG tube in, pain and nausea medicine and admitted me for 3 days until it wasn't hurting as bad anymore...anyway, in December of 2010 I was in the hospital and I had enough of the games so I asked if it could be my gallbladder since it felt a lot like people explain them, the doctor says "yeah, I guess we can check that" they do the hydascan, he comes back in and tells me that he is so shocked that I made a self diangosis, and my gallbladder was only working at 2% and no stones! I know that if they had sent me home again it wouldn't have been a whole lot longer before it would have killed me. After surgery, the surgeon said that it was black an VERY sick. Anyway, they kept me until they could do the surgery (that also incuded another hernia repair and a sm bowel biopsy) on December 23rd...I was in the hospital for about 3 1/2 weeks.
About 3 or 4 months later after I'm about fully recovered I start having very similiar, but much more painful attacks landing me in the ER again several times! My Lipase levels were levated, but didnt find this out until I went into see my GI doctor. I asked if he would do an EGD on me to find out what in the world is happening, he says he can do it, but doesn't think he will find anything and that its probably just pain from my intestines being so screwed up. He did it last week, and says he couldn't believe how much food was still in my stomach from over 12 hours before the test. He is setting up a gastroparesis test to confirm it...I had previously been on 2 out of the 3 medications to treat it. I think that I might have chronic pancreatitis...the symptoms listed on the internet almost fit me to a T. I haven't had a horrible attack in a few weeks, just smaller ones...and I know that's not a good sign either, and that could be your pancreas quit working! I know doctors don't like to do ERCPs because it could cause pancreatitis if something goes wrong, so I don't know if he will even try it!
Why are my organs shutting down?? I'm thinking maybe a rare muscle/nerve disease...please help me!!!! :( I hope you all get answers, also!
A related discussion, Chronic Pancreatitus was started.
Hi, you probably have seen my earlier posts. The only thing I can think to recommend is that he go to a University Hospital and search for a pancreatic specialist. An ERCP or a MRCP can be performed to check out the pancreas and the ducts. A ct scan can also evaluate for pancreatitis problems. If a dr. tells you it is nothing, then it is time to go to another dr.!
Hi my name is Toni
My hsb had a bad case of acute pancreatits in 8/02
ever since then he has had chronic abdominal pain and chronic nausea he had his gallbladder removed in 11/02 things become worst!! now 2 years later he currently lives on
Oxycontin 80mgs 3x a day
roxcodone 5mg 4 x a day
neurotin
phenergan
reglin
He has been poked probe scraned no one seems to be able to help with his pain
we recently went to a pain doctor in which he did a nerve block the temp. worked, but when he went to do the more permanent one this did not work. So now the pain has gone into his legs and the pain pills are not working. When we went to our visit with the pain doctor he had decided that since the nerve block did not work that he did not know what else to do for us and referred us back to our pcp doctor. We are at the point now that we would like to be able to find pain control or tell us what avenue do we take now? My hsb is only 40yrs old and most of the time is confined to the bed due to the pain. He is an insulin diabetic now and has to take panokase pills to eat. even at this that don't help it still hurts to eat.
We don't know what else to do I just can't believe that someone has to live with this much pain and there is nothing no one can do. We are trying to get into the Mayo Clinic but this is very hard! They have turned us down once due to being able to see a pain doctor, but since that avenue has been deleted we are now hoping that we will be accepted. We want our life back so bad it is so hard to watch someone you love so much suffer so bad and there seems like there is no help out there for him.
I don't know are we looking in the wrong places? Is there something that can be done? Is there any help for us?
If anyone can help us or tell me were else to look
God Bless you. I just don't know how much longer he can hold on. I can't tell you how many times I have held him in my arms become he is crying and the pain is so bad that he is vomiting.
Pleas if anyone can help us we are so desperate that I don't know what else to do at this point.
My email address is
t.***@****
desperate in Arizona
My hsb had a bad case of acute pancreatits in 8/02
ever since then he has had chronic abdominal pain and chronic nausea he had his gallbladder removed in 11/02 things become worst!! now 2 years later he currently lives on
Oxycontin 80mgs 3x a day
roxcodone 5mg 4 x a day
neurotin
phenergan
reglin
He has been poked probe scraned no one seems to be able to help with his pain
we recently went to a pain doctor in which he did a nerve block the temp. worked, but when he went to do the more permanent one this did not work. So now the pain has gone into his legs and the pain pills are not working. When we went to our visit with the pain doctor he had decided that since the nerve block did not work that he did not know what else to do for us and referred us back to our pcp doctor. We are at the point now that we would like to be able to find pain control or tell us what avenue do we take now? My hsb is only 40yrs old and most of the time is confined to the bed due to the pain. He is an insulin diabetic now and has to take panokase pills to eat. even at this that don't help it still hurts to eat.
We don't know what else to do I just can't believe that someone has to live with this much pain and there is nothing no one can do. We are trying to get into the Mayo Clinic but this is very hard! They have turned us down once due to being able to see a pain doctor, but since that avenue has been deleted we are now hoping that we will be accepted. We want our life back so bad it is so hard to watch someone you love so much suffer so bad and there seems like there is no help out there for him.
I don't know are we looking in the wrong places? Is there something that can be done? Is there any help for us?
If anyone can help us or tell me were else to look
God Bless you. I just don't know how much longer he can hold on. I can't tell you how many times I have held him in my arms become he is crying and the pain is so bad that he is vomiting.
Pleas if anyone can help us we are so desperate that I don't know what else to do at this point.
My email address is
t.***@****
desperate in Arizona
thank you for your comments and for sharing your experience. I have "been through the mill" with stomache ailments. As I said before, my last visit to the ER produced normal blood work. Since then, I was sent for a MRCP to check out my ducts. Wow, what a shock to see that I have a stone in my bile duct. I had my gallbladder removed 5 years ago! The stone is not completely blocking the flow of bile so I'm living with it for now and I'm also waiting to hear from my dr. (a GI specialist at an Univ. hospital). I don't know yet if I need to have it removed or just let it (hopefully) go out on its own. I haven't had an attack since 9-2-03 so I feel stronger every day but with lots of fatigue. I don't know if I have Chronic Pancreatitis or not but it is something I will check into in the near future. Thanks again!!
I'm more than happy to share any of the information I have. My local GI was impressed when he was reviewing some of the possible diagnoses with me and I already had an idea what he was talking about - that was due to the people I had talked to on this page and the links to other information they had give me.
First of all, yes the Trypsin level testing is a blood test. The one thing I did find out is that when I was in the hospital they had run a Trypsin test that came back perfectly normal. I then had it done by the specialist at a different hospital and it came back boarderline. The specialist explained to me that labs have differnt criteria so that was the explaination for the difference in the tests.
I have not had the fecal fat test done. I had a secretin test performed.
My suggestion would be to try to get a referral to a University hospital in your area if there is one. From what I have heard and been told a lot of times they specialisats and access to testing that your normal everyday hospital may not have. I live in a large city in Florida where you would think they would have some of the best facilities, but I found out that when it come to the out of the ordinary you have to do some research and get a referral to the right place.
As far as having chronic pancreatitis and not having elevated lipase and amylase levels - I went to the specialist again on Monday (9/15) and we discussed a number of things. One was that a visit to the ER where they take blood work is not going to show that my amylase and lipase are elevated if I have a breakthrough attack. The specialist told me that most doctors (espcially ER doctors) are not necessarily aware that your pancreatic levels WILL NOT be elevated if you suffer from chronic pancreatitis.
My visits are usually very intesting because it is a teaching hospital so I get to hear the specialist explain everything to the resident he is working with. I've been through about four visits with a resident now and learn more each time. They send the resident in to do your workup and then they report back to the specialist and then they both come in to finish the vist.
This time I listened to the specialist explain how he came to the diagnosis of chronic pancreatitis that he did. This doctor specializes in pancreatits so I got really lucky that when I was referred to the clinic I ended up with him as my doctor. My diagnosis was really a combination of things - gastroparesis, trypsin levels and the results of the secretin test.
It is my understanding that the secretin test is the earliest possible diagnostic test that will indicate chronic pancreatitis. Before I had it done I was told that it would show on this test before it would ever show on CT, etc.
I still have a significant amount of pain in my right upper quadrant and have been referred back to my local GI for a referral to a surgeon. The specialist believes that I have a "nodule" that formed after the surgery and is inflamming nerves in that area. I haven't been to my local GI yet so I'm not sure what course they are going to take, but the specialist told me it is usually one of three things. (1) An injection into the site with a mediation to numb the area; (2) resection of the area; or (3) surgical removal of the "nodule".
I'm not quite sure what's going to happen over the next few months, but I'm hoping that Santa Clause brings me good health for Christmas!!!!!!!!!!!!!
If you have any other questions I may be able to answer or even if I can't but you just want to ask go ahead. If I can't answer I may have a web page that will give you some information.
Unfortunately, from what I understand chronic pancreatitis is a difficult diagnosis to get, especially if you are not in a high risk category (alcoholic, uncontrolable cholesterol, etc.) I think a lot of it has to do with seeing the right doctor in the right facility at the right time.
BEST OF LUCK.
First of all, yes the Trypsin level testing is a blood test. The one thing I did find out is that when I was in the hospital they had run a Trypsin test that came back perfectly normal. I then had it done by the specialist at a different hospital and it came back boarderline. The specialist explained to me that labs have differnt criteria so that was the explaination for the difference in the tests.
I have not had the fecal fat test done. I had a secretin test performed.
My suggestion would be to try to get a referral to a University hospital in your area if there is one. From what I have heard and been told a lot of times they specialisats and access to testing that your normal everyday hospital may not have. I live in a large city in Florida where you would think they would have some of the best facilities, but I found out that when it come to the out of the ordinary you have to do some research and get a referral to the right place.
As far as having chronic pancreatitis and not having elevated lipase and amylase levels - I went to the specialist again on Monday (9/15) and we discussed a number of things. One was that a visit to the ER where they take blood work is not going to show that my amylase and lipase are elevated if I have a breakthrough attack. The specialist told me that most doctors (espcially ER doctors) are not necessarily aware that your pancreatic levels WILL NOT be elevated if you suffer from chronic pancreatitis.
My visits are usually very intesting because it is a teaching hospital so I get to hear the specialist explain everything to the resident he is working with. I've been through about four visits with a resident now and learn more each time. They send the resident in to do your workup and then they report back to the specialist and then they both come in to finish the vist.
This time I listened to the specialist explain how he came to the diagnosis of chronic pancreatitis that he did. This doctor specializes in pancreatits so I got really lucky that when I was referred to the clinic I ended up with him as my doctor. My diagnosis was really a combination of things - gastroparesis, trypsin levels and the results of the secretin test.
It is my understanding that the secretin test is the earliest possible diagnostic test that will indicate chronic pancreatitis. Before I had it done I was told that it would show on this test before it would ever show on CT, etc.
I still have a significant amount of pain in my right upper quadrant and have been referred back to my local GI for a referral to a surgeon. The specialist believes that I have a "nodule" that formed after the surgery and is inflamming nerves in that area. I haven't been to my local GI yet so I'm not sure what course they are going to take, but the specialist told me it is usually one of three things. (1) An injection into the site with a mediation to numb the area; (2) resection of the area; or (3) surgical removal of the "nodule".
I'm not quite sure what's going to happen over the next few months, but I'm hoping that Santa Clause brings me good health for Christmas!!!!!!!!!!!!!
If you have any other questions I may be able to answer or even if I can't but you just want to ask go ahead. If I can't answer I may have a web page that will give you some information.
Unfortunately, from what I understand chronic pancreatitis is a difficult diagnosis to get, especially if you are not in a high risk category (alcoholic, uncontrolable cholesterol, etc.) I think a lot of it has to do with seeing the right doctor in the right facility at the right time.
BEST OF LUCK.
Hey 5Fan,
When I read your post from May - I said "OH MY GOODNESS". I have too been diagnosed with 1st - gastritis; 2nd - Gall Bladder Disease; 3rd - IBS and then 4th - gastroparesis. Short description of what happened to me: I got really sick in July, 2000 after eating a steak and having 2 drinks. Felt like I had drank a million. I was so sick couldn't work. When to the doc had ultrasound, bloodwork everything normal. Said I probably had flu or bacteria infection put on antibotics and prevacid. Sent to GI as i was losing weight, nite sweats, nauseated, back killing me. Did endoscopy and colonscopy said just had gastritis and continue taking prevacid. After 5 weeks of being still severly sick sought a new PCP. He said he still thought I had gb problems and sent me in for HIDA scan. GB never showed up. Said I had cronic & acute GB disease w/o stones. Had it removed 3 days later. Surgery did help some but still had major back pain but I didn't feel inflamed anymore. Had more tests, sent to a 2nd GI and had Gastric Emptying scan said I had Gastroparesis. I found a local support group and the med center here and went to meetings. Did research, tried medicine. Learned real quick that this was not my problem. U do not have back pain w/gastroparesis. Went back to surgeon who removed GB. He sent me in for MRCP which was normal then sent me to yet a 3rd GI who specialized with and ERCP. Had it performed on my biliary duct and dilated. Found 2 very small stones and lots of yellow debris in my duct which never showed on the scans I had. Well, pain was relieved all on my right side but continued with left sided chest and back pain - mostly in back. Went back to him asking about my pancreas duct but he didn't want to check it as all my labs have always been normal cause he didn't want to cause problems. Gave me some nerve pills and sent me on my way. I went to a phychiatrist for 2 visits at $150 a visit. Could not afford it - I have a hubby & 3 small kids to take care of so I decided to start living the best I could and ignore my pain. At this time I was down to 101 lbs from my normal 136 when this all started. I've pushed myself every single day to go and do what i have to for my family. I finally thought well if this is all in my head why not drink alcohol if I want it so I started drinking some. I several times where it would cause tummy pain and I'd have to lay down but I did start putting some weight back on. A few months ago, my pain was starting to get to me lot - my whole body started swelling including my face and neck. I thought I have to quit drinking and lose the swelling. My hubby and I both started the atkins diet about 4 weeks ago at which time I was already hurting badly in my back. I kid u not, I've lost close to 20 lbs which was mostly swelling but my back pain is at its worst. I know when u have CP, its suggested to stay on low fat, high carb diet but the atkins is the opposite. I feel so terrible and hurt like u wouldn't believe. I have quit the diet but have not started drinking the alcohol and won't. I know that my problem is probably CP as all this started. Sorry I've gotten carried away on my story, just when I saw your diagnosis I just wanted to speak out.
Take care,
Tonya - Arkansas
When I read your post from May - I said "OH MY GOODNESS". I have too been diagnosed with 1st - gastritis; 2nd - Gall Bladder Disease; 3rd - IBS and then 4th - gastroparesis. Short description of what happened to me: I got really sick in July, 2000 after eating a steak and having 2 drinks. Felt like I had drank a million. I was so sick couldn't work. When to the doc had ultrasound, bloodwork everything normal. Said I probably had flu or bacteria infection put on antibotics and prevacid. Sent to GI as i was losing weight, nite sweats, nauseated, back killing me. Did endoscopy and colonscopy said just had gastritis and continue taking prevacid. After 5 weeks of being still severly sick sought a new PCP. He said he still thought I had gb problems and sent me in for HIDA scan. GB never showed up. Said I had cronic & acute GB disease w/o stones. Had it removed 3 days later. Surgery did help some but still had major back pain but I didn't feel inflamed anymore. Had more tests, sent to a 2nd GI and had Gastric Emptying scan said I had Gastroparesis. I found a local support group and the med center here and went to meetings. Did research, tried medicine. Learned real quick that this was not my problem. U do not have back pain w/gastroparesis. Went back to surgeon who removed GB. He sent me in for MRCP which was normal then sent me to yet a 3rd GI who specialized with and ERCP. Had it performed on my biliary duct and dilated. Found 2 very small stones and lots of yellow debris in my duct which never showed on the scans I had. Well, pain was relieved all on my right side but continued with left sided chest and back pain - mostly in back. Went back to him asking about my pancreas duct but he didn't want to check it as all my labs have always been normal cause he didn't want to cause problems. Gave me some nerve pills and sent me on my way. I went to a phychiatrist for 2 visits at $150 a visit. Could not afford it - I have a hubby & 3 small kids to take care of so I decided to start living the best I could and ignore my pain. At this time I was down to 101 lbs from my normal 136 when this all started. I've pushed myself every single day to go and do what i have to for my family. I finally thought well if this is all in my head why not drink alcohol if I want it so I started drinking some. I several times where it would cause tummy pain and I'd have to lay down but I did start putting some weight back on. A few months ago, my pain was starting to get to me lot - my whole body started swelling including my face and neck. I thought I have to quit drinking and lose the swelling. My hubby and I both started the atkins diet about 4 weeks ago at which time I was already hurting badly in my back. I kid u not, I've lost close to 20 lbs which was mostly swelling but my back pain is at its worst. I know when u have CP, its suggested to stay on low fat, high carb diet but the atkins is the opposite. I feel so terrible and hurt like u wouldn't believe. I have quit the diet but have not started drinking the alcohol and won't. I know that my problem is probably CP as all this started. Sorry I've gotten carried away on my story, just when I saw your diagnosis I just wanted to speak out.
Take care,
Tonya - Arkansas
thanks for that heap of information. I have been battling the (unknown) and (known) for 5 years now. Finally was diagnosed with SOD and had a biliary sphincterotomy. I thought all was well for a while. Only 5 months later and I feel I am back to square one. I asked my family dr. about having my trypsin level checked. He said no. Is that a blood test?? Also I wanted to ask you about the fecal fat test. Have you had one? I'm just trying to piece together some information to understand alittle about pancreatitis. I have had attacks in the past but now all my blood work comes back fine. Both the amalyse and lipase are normal. The er doctor asks me if I have chronic pancreatitis and all I can tell him is that I haven't been given that diagnoses yet. Then they won't give me any pain meds except Tordol. Thanks.
whoops.
Sorry about that. Just noticed I posted a lot of posts.
Anyone has any comments about my thread yet?
Please let me know.
thanks,
conner
Sorry about that. Just noticed I posted a lot of posts.
Anyone has any comments about my thread yet?
Please let me know.
thanks,
conner
Sorry for the delay in posting any responses that I have, but I have been on vacation and recooperating from same. I had to postpone my vacation three times last year due to pancreatits and gallbladder surgery. FINALLY I GOT TO GO!!!!!!!!
I can't remember who asked what, but these are the answers (I have from my experience) to the questions I remember:
IDIOPATHIC - means there is no known cause. If I remember correctly approximately 20% of all pancreatitis cases are termed idiopathic because there is no know "cause" for it. In my case they never found a gallstone which may have been the cause, I do not drink, my cholosterol is just about perfect, no psydo cyst to be found, etc. I do have an abnormal Trypsin level (not quite in the chronic range, but boarderline (it's not normal either). I also suffer from what the doctor told me is "small duct" chronic pancreatitis.
SECRETIN TEST - this test was developed by the specialist I see and according to him is only performed in approximately 10 medical facilities in the US. For this test you are not sedated, you are given two solutions to numb your throat and mouth (lydocain and xylocain I believe). One the rub on certain parts of your mouth and the other you gargle with. Once they have numbed your troat and mouth you are given a tube with a metal weight on the end to swallow. You sit up, tilt your chin to your chest and just begin swallowing until you get the tube down. You than are laid down and a floroscope (sp) is used to insert a "wire" down your throat and through your body until it reaches the small intestine (I belive) - the technican has certain "markers" they have to line up during the process. They then tape the tube with the floroscopy "wire" to the side of your mouth and you are "hooked up" to a machine that stimulates your pancreas and also "sucks" the biproducts out. You are given a suction tube (like at the dentist) to help keep your saliva under control. Every 1/2 they empty the biproduct container and tests are run on the contents. It is my understanding that they measure the amount of biproduct and also test the bicorbonate level. Depending on the results of these tests they can determine whether or not you have chronic pancreatitis. THIS IS VERY ELEMENTARY UNDERSTANDING OF THE TEST I'M SURE. I work in the area of law, not medicine, so my knowledge and understanding is limited, unfortunately. It is my understanding that although my bicarbonate level came back norm, the amount of enzymes my pancrease produced was insufficient, therefore I was diagnosed with chronic pancreatitis. I'm not quite sure of all the criteria for "small duct" versus any other type, but the doctor did tell me that I am not really at any increased risk of full blown diabetes because I don't suffer from the same type as alcoholics. He also told me that I probably will not get any worse, but that I will most likely never get any better either. (A little bit of mixed news!) He and my regular GI seem to feel that at this point I am at maximum medical improvement and from here on out it is a matter of managing the conditions and pain.
ENZYME LEVELS - It is my understanding from what I have been told that if you suffer from chronic pancreatits your pancreatic enzymes will not necessarily elevate during an attack. Actually, you will probably have elevated pancreatic enzymes with an ACUTE attack, but not with a CHRONIC attack. This was the case for me. The first attack I had was acute and depending on the doctor you talk to ranged from "moderate/severe" to "severe". At the time I was admitted to the hospital I had a Bilirubin of 2.8; Alkaline phosphatase of 226, SGPT of 780, SGOT of 628, Lipase of 1919 Amylase of 658. My gallbladder was removed and I was discharged. The second time I was admitted to the hospital all my labs came back normal. I spent five days in the hospital having various tests done (this was before my diagnosis) and all were "normal". I was told by one of my GI's partners that it was not possible that I had chronic pancreatitis. Luckily my GI is a competent doctor an went above and beyond and sent me to a specialist when he couldn't find out what was wrong with me. He had several things he suspected, but sent me to the specialist who could do the more sensative testing for the conditions.
BEST WISHES TO EVERYONE. I understand what it is like to battle the unknown. Unfortunately I am also still going through it to some extent (they don't seem to be able to explain why I can't get rid of the pain I have every single day) I am now on an anti-inflammatory in an effort to control some the "smooth muscle pain" I have been experiencing. I never had any problems before the gallbladder/acute pancreatitis attack - I could eat anything, do just about anything - now I find it hard to eat quite a number of foods and have to be careful with my activities. Some cause more pain and tenderness than others. I am very grateful that I have as much of a diagnosis as I have. I remember all to well what it was like not knowing anything. I wouldn't want to go back to that for anything.
I can't remember who asked what, but these are the answers (I have from my experience) to the questions I remember:
IDIOPATHIC - means there is no known cause. If I remember correctly approximately 20% of all pancreatitis cases are termed idiopathic because there is no know "cause" for it. In my case they never found a gallstone which may have been the cause, I do not drink, my cholosterol is just about perfect, no psydo cyst to be found, etc. I do have an abnormal Trypsin level (not quite in the chronic range, but boarderline (it's not normal either). I also suffer from what the doctor told me is "small duct" chronic pancreatitis.
SECRETIN TEST - this test was developed by the specialist I see and according to him is only performed in approximately 10 medical facilities in the US. For this test you are not sedated, you are given two solutions to numb your throat and mouth (lydocain and xylocain I believe). One the rub on certain parts of your mouth and the other you gargle with. Once they have numbed your troat and mouth you are given a tube with a metal weight on the end to swallow. You sit up, tilt your chin to your chest and just begin swallowing until you get the tube down. You than are laid down and a floroscope (sp) is used to insert a "wire" down your throat and through your body until it reaches the small intestine (I belive) - the technican has certain "markers" they have to line up during the process. They then tape the tube with the floroscopy "wire" to the side of your mouth and you are "hooked up" to a machine that stimulates your pancreas and also "sucks" the biproducts out. You are given a suction tube (like at the dentist) to help keep your saliva under control. Every 1/2 they empty the biproduct container and tests are run on the contents. It is my understanding that they measure the amount of biproduct and also test the bicorbonate level. Depending on the results of these tests they can determine whether or not you have chronic pancreatitis. THIS IS VERY ELEMENTARY UNDERSTANDING OF THE TEST I'M SURE. I work in the area of law, not medicine, so my knowledge and understanding is limited, unfortunately. It is my understanding that although my bicarbonate level came back norm, the amount of enzymes my pancrease produced was insufficient, therefore I was diagnosed with chronic pancreatitis. I'm not quite sure of all the criteria for "small duct" versus any other type, but the doctor did tell me that I am not really at any increased risk of full blown diabetes because I don't suffer from the same type as alcoholics. He also told me that I probably will not get any worse, but that I will most likely never get any better either. (A little bit of mixed news!) He and my regular GI seem to feel that at this point I am at maximum medical improvement and from here on out it is a matter of managing the conditions and pain.
ENZYME LEVELS - It is my understanding from what I have been told that if you suffer from chronic pancreatits your pancreatic enzymes will not necessarily elevate during an attack. Actually, you will probably have elevated pancreatic enzymes with an ACUTE attack, but not with a CHRONIC attack. This was the case for me. The first attack I had was acute and depending on the doctor you talk to ranged from "moderate/severe" to "severe". At the time I was admitted to the hospital I had a Bilirubin of 2.8; Alkaline phosphatase of 226, SGPT of 780, SGOT of 628, Lipase of 1919 Amylase of 658. My gallbladder was removed and I was discharged. The second time I was admitted to the hospital all my labs came back normal. I spent five days in the hospital having various tests done (this was before my diagnosis) and all were "normal". I was told by one of my GI's partners that it was not possible that I had chronic pancreatitis. Luckily my GI is a competent doctor an went above and beyond and sent me to a specialist when he couldn't find out what was wrong with me. He had several things he suspected, but sent me to the specialist who could do the more sensative testing for the conditions.
BEST WISHES TO EVERYONE. I understand what it is like to battle the unknown. Unfortunately I am also still going through it to some extent (they don't seem to be able to explain why I can't get rid of the pain I have every single day) I am now on an anti-inflammatory in an effort to control some the "smooth muscle pain" I have been experiencing. I never had any problems before the gallbladder/acute pancreatitis attack - I could eat anything, do just about anything - now I find it hard to eat quite a number of foods and have to be careful with my activities. Some cause more pain and tenderness than others. I am very grateful that I have as much of a diagnosis as I have. I remember all to well what it was like not knowing anything. I wouldn't want to go back to that for anything.
Hello,
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
Hello,
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
Hello,
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
Hello,
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
thanks,
Conner
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
thanks,
Conner
I have also had a lot of the same symtoms. I have landed in the hospital twice as well. They kept sending me home telling me that I had the flu or some kind of virus. I finally refused to leave untill they found the problem and was admitted to the hospital. After three days of testing they finally did a pipida scan and they found that the function of my gallbladder was only at 7% and did surgery two hours later. This scan measures the function of most of your internal organs. Gallbladder problems were the last thing that anyone had thought of because I had had all of the other tests done and I don't fit the norm. I am 22, thin and healthy with no known family history of gallbladder problems.
Hello,
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
My name is Conner. My guitar teacher got diagnosed with Chronic Pancreatitis; Gastroparesis a while ago.
He doesn't have insurance, he coughed up a glassful of blood last friday, and the doctor wants to take out 1/2 of his pancresis and then he would become diabetic. He would then need to take insulin every day.
He really needs help, and I'm his best friend and his student. I don't know what to do to help him. The doctor says that he could live off Ensure, but he doesn't buy it. And he has to take pills so he could digest his food.
Please help.
Conner Huff
conner.***@**** (work)
***@**** (personal)
Interested in comment from aliciac27. I have had steady bloating,indigestion & nausea with UR abdominal pain radiating to back going back 2 1/2 years now. Had all the tests: G.I. upper & lower, Ultrasound, blood, CT Scan & Endoscopy but am feeling worse as each month goes by. As per aliciac comments, my wife has been suffering identically with the same symptoms. Let me know if you here of any spore or something that can affect people in two's.
Hello everyone! This is my second time on the board. How do I get any comments or questions answered? I spent last Monday night in the hospital. Disabling pain, Amylase was 525. After a couple rounds of Demerol and IV fluids, I was released the next eve, basically to wait on the next "attack"! What is "idiopathic"? If anyone would like to email to chit chat or help answer any questions, PLEASE do! ***@****.
Look forward to hearing from anyone that could offer advice, or that I can help!! Take Care!
Look forward to hearing from anyone that could offer advice, or that I can help!! Take Care!
I'm new to the board... pretty new to the subject, but if anyone could help I'd be greatly appreciative!!!
A couple of months ago my husband was admitted into the hopital suddenly with pancreatitis. We had never heard of this before, but they sure told us quickly how dangerous it is. Problem is, he had none of the symptoms they described: drinking, gallstones, etc, he won't even take aspirin. He was in the hospital for 34 days straight, two surgeries to remove psuedo-psysts, and then they removed his gall bladder just hoping that would solve the problem... although they found no sign of gallstones. He has been back in the hospital with the pancreatitis twice since then.
A little over a month ago I started getting very severe pain in my abdomen. I went to the walk in clinic at my doctor's office, where they did blood work. A few days later I began vomiting on a daily basis, still having the constant abdominal pain. I saw my doctor. My husband and I told him our concerns about the possibility of my having pancreatitis, as I had the exact same symptoms. My doctor quickly dismissed it and sent me home with phenergan saying I more than likely had a virus and it would pass. After vomiting 14 days straight, I was back at my doctor's office... again, phenergan and go home.
I got home late that afternoon and there was a letter from my doctor's office in the mail (from the first time I had gone in), saying I needed to contact them about my blood work. I called them first thing the following morning and was told that my enzymes were high and they suspected that I had pancreatitis. I drove the 45 minutes back to my doctor's office, where the doctor doing the walk-in clinic sent me directly to the Emergency Room. When I arrived at the ER, they immediately did the testing and confirmed that I did have pancreatitis. I also had a very large gall stone that required emergency surgery. I had this emergency surgery last night, and I came home this morning (by choice), because I HAVE to find some answers. Every doctor there wants to believe this is just some huge coincidence, but I really do not believe that. Neither of us drink or do drugs, and were perfectly healthy before our pancreatitis occured. Is there something that we could be exposed to that would cause this in both of us? By the way, I am 30 and he is 31. We lived pretty healthy lifestyles up until this occurred. Any advice?????
A couple of months ago my husband was admitted into the hopital suddenly with pancreatitis. We had never heard of this before, but they sure told us quickly how dangerous it is. Problem is, he had none of the symptoms they described: drinking, gallstones, etc, he won't even take aspirin. He was in the hospital for 34 days straight, two surgeries to remove psuedo-psysts, and then they removed his gall bladder just hoping that would solve the problem... although they found no sign of gallstones. He has been back in the hospital with the pancreatitis twice since then.
A little over a month ago I started getting very severe pain in my abdomen. I went to the walk in clinic at my doctor's office, where they did blood work. A few days later I began vomiting on a daily basis, still having the constant abdominal pain. I saw my doctor. My husband and I told him our concerns about the possibility of my having pancreatitis, as I had the exact same symptoms. My doctor quickly dismissed it and sent me home with phenergan saying I more than likely had a virus and it would pass. After vomiting 14 days straight, I was back at my doctor's office... again, phenergan and go home.
I got home late that afternoon and there was a letter from my doctor's office in the mail (from the first time I had gone in), saying I needed to contact them about my blood work. I called them first thing the following morning and was told that my enzymes were high and they suspected that I had pancreatitis. I drove the 45 minutes back to my doctor's office, where the doctor doing the walk-in clinic sent me directly to the Emergency Room. When I arrived at the ER, they immediately did the testing and confirmed that I did have pancreatitis. I also had a very large gall stone that required emergency surgery. I had this emergency surgery last night, and I came home this morning (by choice), because I HAVE to find some answers. Every doctor there wants to believe this is just some huge coincidence, but I really do not believe that. Neither of us drink or do drugs, and were perfectly healthy before our pancreatitis occured. Is there something that we could be exposed to that would cause this in both of us? By the way, I am 30 and he is 31. We lived pretty healthy lifestyles up until this occurred. Any advice?????
Hi! I have been "battling" chronic pancreatitis since July. What are you referring to as a "secretion test"? Is it the pipida scan? This is the same pain I remember from gallstones years ago. Like others, My enzymes will skyrocket during a sever attack, and after a couple days or so, will go back to normal. I have been hospitalized for 5 days with the worse attack. Does anyone know if this is a common problem that could be associated with having gastric by-pass surgery? Thanks for your help!
When a physician you are seeing becomes locked into one way of looking at your situation, and that perspective doesn't comport with your experience, or common sense, it's time to get another opinion.
I had two different GI doctors tell me that the excruciating, disabling pain, unlike any pain I'd ever had before, that occured every single day, 2-3 hours after every meal, and that began literally the day after I had my gall bladder removed, was "stress." When I asked why my stress level would change so dramatically in only one day, they just shrugged.
A third doctor at a major medical center who wasn't locked into one way of looking at the problem had a different idea that has helped a lot.
I had two different GI doctors tell me that the excruciating, disabling pain, unlike any pain I'd ever had before, that occured every single day, 2-3 hours after every meal, and that began literally the day after I had my gall bladder removed, was "stress." When I asked why my stress level would change so dramatically in only one day, they just shrugged.
A third doctor at a major medical center who wasn't locked into one way of looking at the problem had a different idea that has helped a lot.
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