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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.
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
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