Aa
ERCP
I am a 32 year old female with a recurrent problem! I had my gallbladder removed in September. 10 days later, I was admitted into the hospital with severe pain that turned out to be acute pancreatitis from retained stones in the common bile duct. While hospitalized, I had an ERCP to remove the stones, and was told "the stones are gone." After going home, I continued to experience chronic pain in the upper right quadrant that was sometimes a mild ache, sometimes a sharp stabbing pain. I returned to the doctor for treatment in November, had another ERCP in mid-December, followed by another attack of acute pancreatitis that I was hospitalized again for 3 days. This time the doctor removed 5 stones from the cystic duct (he called them "hidden stones"). When I was released, the doctor said that any new stones that I form, or any that are still "hidden" should fall right out because I had a complete spincterotomy. In the three weeks since I had the last ERCP, I have continued to have pain, severe belching throughout the day, and the inability to eat much (I have lost 10 pounds). On New Year's eve I went to the ER with what I thought was a pancreatitis attack (it disapated after 15 minutes), and all the tests performed there were normal, including CT Scan, lipase and amylase, x-rays and urine tests.
I have either diarrhea or no bowel movements at all. I'm desperate for an answer, and the doctors seem clueless, or unavailable. I'm tempted to try natural remedies. Is there anyone out there that has been through a similar ordeal? I'm an alarmist and have concerns about having chronic pancreatitis, so am reluctant to have another ERCP unless absolutely necessary.
I have either diarrhea or no bowel movements at all. I'm desperate for an answer, and the doctors seem clueless, or unavailable. I'm tempted to try natural remedies. Is there anyone out there that has been through a similar ordeal? I'm an alarmist and have concerns about having chronic pancreatitis, so am reluctant to have another ERCP unless absolutely necessary.
Sometimes a combination of different drugs can cause pain, and an unexplained reaction. I wouldn't venture a guess what is causing her continued pain, but you can just about be assured it's NOT "in her head"...I HATE WHEN DOCTORS FALL BACK ON THAT EXPLANATION!
If she were my daughter and the pain continues, I would enlist the help of a physician who specializes in pain management....I have known this to solve the pain issue for several patients who could find no other way to control the pain...
Paty
If she were my daughter and the pain continues, I would enlist the help of a physician who specializes in pain management....I have known this to solve the pain issue for several patients who could find no other way to control the pain...
Paty
Thanks Paty for your reply.
Yes, my daughter is 11 years old. When this journey began in 2004 with gallstones, we thought 'how could this be?'. Of course, all of the nurses and Dr's were amazed, as well. But, apparently, it can happen in children (mostly in teens) who are otherwise healthy with no diseases such as sickle cell, etc.
Anyway, I am curious now in regards to your statement regarding the 'Tylenol Cold'. In the past 3 weeks her list of med's that have been given are the following (OF COURSE, they were given at different times and with hospital/Dr. supervision):
Brovex HC- cough/narcotic
Tylenol-Extra Strength
Omnicef-antibiotic
Demerol-pain
Torodol-pain
Diladid- pain/narcotic
Motrin alternating with Tylenol- pain
Zofran - nausea
Since being out of the hospital (discharged with unexplained pain) she continues to be on Motrin alternating with Tylenol for pain.
My question is could this pain still be continuing after 3 weeks due to the med's she has recieved? Or, maybe even the Tylenol is still adding to the problem? I, also, wonder if the Dr's would have been able to tell if she was having a "SOD" attack having had all of the tests done that she did (MRCP, CT, etc). Or, are these attacks just pain and unable to be seen/diagnosed by the eye/tests? Some of the Dr's seem to think it is a 'phsycological' thing, to some degree. I know it is not, you can see it in her eyes, etc. At the same time the Dr's want to 'blame' her, they are the first to say "We just don't know the answer. All of the tests we've done are normal. Just manage her pain at home".
Any thoughts are greatly appreciated!!! Yes, it is such a stressful time not having any answers. Not just for my husband and me, but for her. She/we wants life to be normal again!
Thanks!
Yes, my daughter is 11 years old. When this journey began in 2004 with gallstones, we thought 'how could this be?'. Of course, all of the nurses and Dr's were amazed, as well. But, apparently, it can happen in children (mostly in teens) who are otherwise healthy with no diseases such as sickle cell, etc.
Anyway, I am curious now in regards to your statement regarding the 'Tylenol Cold'. In the past 3 weeks her list of med's that have been given are the following (OF COURSE, they were given at different times and with hospital/Dr. supervision):
Brovex HC- cough/narcotic
Tylenol-Extra Strength
Omnicef-antibiotic
Demerol-pain
Torodol-pain
Diladid- pain/narcotic
Motrin alternating with Tylenol- pain
Zofran - nausea
Since being out of the hospital (discharged with unexplained pain) she continues to be on Motrin alternating with Tylenol for pain.
My question is could this pain still be continuing after 3 weeks due to the med's she has recieved? Or, maybe even the Tylenol is still adding to the problem? I, also, wonder if the Dr's would have been able to tell if she was having a "SOD" attack having had all of the tests done that she did (MRCP, CT, etc). Or, are these attacks just pain and unable to be seen/diagnosed by the eye/tests? Some of the Dr's seem to think it is a 'phsycological' thing, to some degree. I know it is not, you can see it in her eyes, etc. At the same time the Dr's want to 'blame' her, they are the first to say "We just don't know the answer. All of the tests we've done are normal. Just manage her pain at home".
Any thoughts are greatly appreciated!!! Yes, it is such a stressful time not having any answers. Not just for my husband and me, but for her. She/we wants life to be normal again!
Thanks!
WOW! If I'm understanding your posting correctly, you have an 11 year old with gall stones...I've never heard of anything like that..it must be driving you, your daughter and her doctors crazy!
My GI doctor explained the bad reactions to narcotics (and other drugs and substances) this way...the narcotics cause shrinking, or contraction, of some mucous membranes and other body tissues..you know how your mouth gets dry when taking pain-killers...that is ths same thing...
Since the sphincter to the pancreas is a small tube-like body part, when it is caused to contract (from the drugs), there is a backup of the pancreatic juices and enzymes, causing the pain and other resulting problems. This is a really simplistic explanation, and I apologize for any incorrect explanation in medical, terchnical terms.
A few months ago I had "the flu" or a terrible cold, and I took "Tylenol Cold" or some such thing that contained a decongestant to stop the runny nose...it gave me the same reaction..I think due to the same phenonoum as described above....my doctor was abit sceptical when I told him about it, but I'm convinced that those of us with this unusual reaction to these things have to be wary and cautious about what we merrily swallow!
By the way...we do LOVE Torodol, but it's use is very limited.
Paty
My GI doctor explained the bad reactions to narcotics (and other drugs and substances) this way...the narcotics cause shrinking, or contraction, of some mucous membranes and other body tissues..you know how your mouth gets dry when taking pain-killers...that is ths same thing...
Since the sphincter to the pancreas is a small tube-like body part, when it is caused to contract (from the drugs), there is a backup of the pancreatic juices and enzymes, causing the pain and other resulting problems. This is a really simplistic explanation, and I apologize for any incorrect explanation in medical, terchnical terms.
A few months ago I had "the flu" or a terrible cold, and I took "Tylenol Cold" or some such thing that contained a decongestant to stop the runny nose...it gave me the same reaction..I think due to the same phenonoum as described above....my doctor was abit sceptical when I told him about it, but I'm convinced that those of us with this unusual reaction to these things have to be wary and cautious about what we merrily swallow!
By the way...we do LOVE Torodol, but it's use is very limited.
Paty
Oh,"ozark".. and she was tested for kidney stones and infections... all were normal!
And, the nurse in the ER locally (we live 2 hours from where she had her ERCP and hospital stays) mentioned "TORADOL" to our pediatrician. She took it for the evening and day until we could get to Charleston for her to be admitted. Seemed to be a good thing!
And, the nurse in the ER locally (we live 2 hours from where she had her ERCP and hospital stays) mentioned "TORADOL" to our pediatrician. She took it for the evening and day until we could get to Charleston for her to be admitted. Seemed to be a good thing!
Wish I had checked back on this board this weekend....
I can't believe some of the similiarities here!
ERCP, the top rated and 'inventor' of this procedure (in 1971), actually did her procedure. So, I do have confidence in his abilities. Though, we did not understand at the time what ERCP can really involve/mean.
My 11 yr. old has MAJOR reactions to the narcotics (Diladid= 'convulsion' type flalling(?) in the bed so much that we had pillows surrounding her after the 2nd ERCP. This time after 3-4 days on it, same thing. We gave it to her again, since Morphine = severe itching for her.)She can speak to you while shes having a reaction with Diladid. On the 2nd ERCP one, she only had 5-30 second intervals between each convulsion, for 36 HOURS!!!!Until it was out of her system.
Right before this latest 'attack' (which is STILL going on and we're now at 3 weeks!!!!!!).... she had Brovex HC for a cough. I'm thinking the 'HC' stands for Hydrocodeine?? Also, Omnicef for the bronchitus/strep sort of illness. She is allergic to LOTS of things (Amoxicillin/ Z-pack, Citrus foods). When her pain had increased so much by Christmas day, gave her Tylenol with codeine. She started, for the first time ever, severe itching with that too.
Could it be that these med's brought on some sort of Syphinc. of Oddi attack? I still don't know what that it.....
Would it last 3 weeks????? Again, upper rt. quadrant pains. We are now 'controlling' her pain with Motrin/Extra Strentgh Tylenol.
Did I mention before that she did have the syphinctor widened on the 2nd ERCP? He wanted any remaining stones to be able to drain out of the bile duct.
I can't believe some of the similiarities here!
ERCP, the top rated and 'inventor' of this procedure (in 1971), actually did her procedure. So, I do have confidence in his abilities. Though, we did not understand at the time what ERCP can really involve/mean.
My 11 yr. old has MAJOR reactions to the narcotics (Diladid= 'convulsion' type flalling(?) in the bed so much that we had pillows surrounding her after the 2nd ERCP. This time after 3-4 days on it, same thing. We gave it to her again, since Morphine = severe itching for her.)She can speak to you while shes having a reaction with Diladid. On the 2nd ERCP one, she only had 5-30 second intervals between each convulsion, for 36 HOURS!!!!Until it was out of her system.
Right before this latest 'attack' (which is STILL going on and we're now at 3 weeks!!!!!!).... she had Brovex HC for a cough. I'm thinking the 'HC' stands for Hydrocodeine?? Also, Omnicef for the bronchitus/strep sort of illness. She is allergic to LOTS of things (Amoxicillin/ Z-pack, Citrus foods). When her pain had increased so much by Christmas day, gave her Tylenol with codeine. She started, for the first time ever, severe itching with that too.
Could it be that these med's brought on some sort of Syphinc. of Oddi attack? I still don't know what that it.....
Would it last 3 weeks????? Again, upper rt. quadrant pains. We are now 'controlling' her pain with Motrin/Extra Strentgh Tylenol.
Did I mention before that she did have the syphinctor widened on the 2nd ERCP? He wanted any remaining stones to be able to drain out of the bile duct.
No, Maryroe, I am not a Texas Paty, I'm a Southern California Paty.
My pain is on the left side under my rib cage..the first time I can remember telling my doctor about it was over 25 years ago...it's like a tightness with (usually) mild discomfort, but it doesn't come and go when it's acting up. ...just stays like that for a few days or weeks..all my CT scans, ultrasounds, MRIs, and all the other tests over the years have been negative, except that it shows an enlarged head of the pancreas (that hasn't changed in size or description for years). I've had a couple of attacks when my liver enzymes became elevated, but you always know when that happens, as you feel like h---!
I've had 2 ERCPs..the first one about 20 years ago (BRUTAL!), the last one 2 1/2 years ago by a specialist who does nothing but diagnostic GI testing at UCLA, and it was MUCH easier...not anything I want to do again, but tolerable. It too, showed nothing unusual. However...in retrospect, I wish he had done the manometer test to see if there was more pressure in the pancreatic duct, but he didn't..he just examined it, and found it normal, except a tight sphincter...suggesting papillary problem in the Sphincter of Oddi. I am a retired RN, so try to assimilate and understand all this stuff....
From all the reading and research I've done, I don't plan on ever having the ERPC where they cut the sphincter to open it further...too many complications, and lots of pain from what I've read.
When I had my knee replacement last April, the Orthopedic Surgeon had scheduled it as an arthroscopic of knee with "possible" total knee replacement...I don't need to add to the story that I woke up with a new knee, as the damaged cartiledge was more than could be repaired. In my inner self, I pretty well knew that would probably be the outcome.
Thanks for all your responses....it's very rare when I get to chat with someone who has this Oddi dysfunction PLUS the arthritic knees and hips!
Paty
My pain is on the left side under my rib cage..the first time I can remember telling my doctor about it was over 25 years ago...it's like a tightness with (usually) mild discomfort, but it doesn't come and go when it's acting up. ...just stays like that for a few days or weeks..all my CT scans, ultrasounds, MRIs, and all the other tests over the years have been negative, except that it shows an enlarged head of the pancreas (that hasn't changed in size or description for years). I've had a couple of attacks when my liver enzymes became elevated, but you always know when that happens, as you feel like h---!
I've had 2 ERCPs..the first one about 20 years ago (BRUTAL!), the last one 2 1/2 years ago by a specialist who does nothing but diagnostic GI testing at UCLA, and it was MUCH easier...not anything I want to do again, but tolerable. It too, showed nothing unusual. However...in retrospect, I wish he had done the manometer test to see if there was more pressure in the pancreatic duct, but he didn't..he just examined it, and found it normal, except a tight sphincter...suggesting papillary problem in the Sphincter of Oddi. I am a retired RN, so try to assimilate and understand all this stuff....
From all the reading and research I've done, I don't plan on ever having the ERPC where they cut the sphincter to open it further...too many complications, and lots of pain from what I've read.
When I had my knee replacement last April, the Orthopedic Surgeon had scheduled it as an arthroscopic of knee with "possible" total knee replacement...I don't need to add to the story that I woke up with a new knee, as the damaged cartiledge was more than could be repaired. In my inner self, I pretty well knew that would probably be the outcome.
Thanks for all your responses....it's very rare when I get to chat with someone who has this Oddi dysfunction PLUS the arthritic knees and hips!
Paty
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