ERCP

[Rileydmk]

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.

[Kevin Pho, MD]

One consideration would be Sphincter of Oddi dysfunction.  This can occur more frequently in those without gallbladders.  An ERCP with Sphincter of Oddi manometry can be considered to evaluate for this condition.  If there is evidence of dysfunction, a sphincterotomy would be a reasonable treatment approach.

If there is concern about more retained bile duct stones, you can consider an MRCP - which is a less invasive test than an ERCP.  However if stones are found, you still have to undergo an ERCP to remove them.

You can discuss these options with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[cwwgirl]

My daughter is almost 11 yrs. old. In 2004, she had her gallbladder removed (3 stones). June of 2005, she had a bile duct stone removed through ERCP. Her amylase/lipase levels were not 'text book' pancreatitus (pancreatitis), but certainly presented itself to be pancreatitus (pancreatitis) (1 nt. turned into 4 nts. in the hospital). Her pains never went away during her hospital stay, nor when we arrived home. Over the next 3 weeks, her pain increased. By the end of July 2005, her Dr. determined he'd been wrong and she did have another 'hidden' bile duct stone (he did make the scphenter muscle wider by an incision, is this the 'schpincter oddi'). Severe pancreatitus (pancreatitis) followed that procedure (a 1 nt. stay turned into 7 nts. in the hospital).

She has been free of pain since this time, but on 12/20/05.... the pain returned. SAME EXACT pains as with the pancreatitus (pancreatitis)/stones. We were convinced that the tests would show that... however, we were wrong. After 7 nts. in the hospital, and every possible tests being done (MRCP, CT, Ultrasounds, bloodwork, stool samples) everything has come back normal. The GI Dr's have told us there is nothing more they can do for her. After having IV's/narcotics for 7 days, she was 'pain free'. Until 2 days home, when slight pains came back. Tonight, the pain is increasing again.... we are soooo frustrated and at a loss as to how to help her??!!??!
Could this be the 'sphincter oddi dsyfunction' you speak of????

PLEASE HELP?!?
BTW, the pain is upper rt. quadrant (under her ribs) and sometimes in her lower left back kidney area.

[ozark]

has she been teted for a kidney infection?

[MaryRoe]

I have had the Sphincture of Oddi dysfunction since having my gallbladder out in 1975.  No picnic.  

Also, did anyone tell you that ERCP's can cause pancreatitis. Many doctors quit doing ERCP's because of triggering a pancreatitis attack.  There are specialists who are well trained in doing this.

There are things than can trigger a Sphincture of Oddi attack.  Medications are one...The worst offenders for me are Morphine, Opiods and Opiod derviatives.  No, I am not a pain med freak but pills like, Vicodin (popular with DDS procedures) Tylenol with codeine, Fentynal, and the list goes on and on.  I also found that Lomotil  can trigger an attack for me.  I was warned to stay away from all narcotics as they will trigger a severe attack (Sphincture of Oddi) with me.  These attacks can last up to 10 hours with me. I am on the floor in a fetal position in severe pain.

These attacks are worse than a gall bladder attack.   What may seem to be perfectly innocent...may bring on an attack. My bathroom habits have never been the same since gallbladder removal.  My CT scans always show a bile duct enlargement.  MRCP test does not show stones.  I will not resort to another ERCP unless I know ahead of time that there was a stone lodged somewhere in there.  Personally, and I mean personally, I feel a surgeon's experience has a lot to do with the success of any surgical procedure.  I happened to of had a poor surgeon. Found this out after the fact.  His license finally was revoked some years later.

Years ago, I was told to go to a place in Wisconsin for a Sphincterectomy (sp).  They had an expert there in Racine. I had 2 small babies and never went.  There is another place that specializes also in this (if this is what you have) and I think it is in Ohio or Indiana or some place in that neck of the woods.   I know this is where I would go if I ever choose to have something done about this.  

Good Luck To You.  

[paty91356]

It was very interesting to read that you are sensitive to narcotics and other pain relieving drugs...I have never spoken to anyone else with Sphincter of Oddi disfunction that has this reaction to narcotics, besides myself.
A word of caution...if you ever have to have surgery, be sure to tell your surgeon of this reaction.  
I had a total hip replacement 3 years ago, and had more problems from the resulting pancreatitis (from pain drugs) than from the surgery.
Last year I had a knee replacement and had to go "cold turkey" on day 2 post-op because the pancreatitis was beginning again.  The next 3 weeks of recovery(?) were awful!
I don't know what people like us are to do when we have surgery, if we are unable to take the narcotics.
Has anyone else experienced this, or does anyone have any suggestions???

[NickyIsHere123]

I would not dive into surgery so quickly. I think you need to do some research first and then come to your own conclusion. I had really bad acid build up in tummy and it happened twice and I have had to see two surgeons. Both of them were looking at me with a quizative eye. Then very unsurely suggested surgery. They told me to do it immediately and do not even think about what was going to happen the day of the surgery. Well, I scheduled and they rolled me into the op room. I had a panic attack and screamed violently at both of them . One had a 12inch butcher knife in his hand and started to wave it around wickedly laughing at me!!! I was nude and totally in the bar ebuff when I quickly hustled out into the parking lot. I fell and scraped my knee. I had two guys on the side of the road running for me ( I think they planned to do something!!!) I was able to get into my car and had to deal with unbearable situation of having each person stare everytime I came to a stop light. There were 25 stop lights mind you...
Just think about this first...;0

[MaryRoe]

I know surgery or any medical procedure can be hard on us as we cannot tolerate narcotics.  (getting a tooth pulled on Tuesday and will Advil this)

My hubby just had a new hip with a great hip doctor and they had him on a Fentynal patch for the first few days. They sent him home with Vicodin and after one Vicodin, he could not tolerate it and he does not have Sphincture of Oddi. He got on Aleve and Advil and kinda toughed it out.

Now, I need knee surgery and I know i cannot have the "hard stuff"...

But, when I was in an ER room for a suspected pleurisy attack 2 years ago, they gave me a shot of Torodol.  WOW! Within, 10 minutes, I was dancing and no Sphincture pain.

I tell everyone and write everywhere that I cannot take any type of narcotics or Opiods or any derivatives of these.

Back to the Torodol, for some reason doctors can only RX this med for 5 days and 5 days only, I was told this by several doctors.
This also comes in pill form and I did ask for these in pill form and was given 15 pills only.  5 days x 3 a day and that was it.  NO REFILLS....

I am not sure if Torodol will be contraindicated with Lovenox or Heparin which we hippers and knee-ers nned for surgery to prevent blood clots but you may want to ask your doctor about Torodol.  

I think I am toooooo old to even think about having anything done now about this Sprhinture problems.  Knees, heart and hips are now in my "age group".  LOL

[paty91356]

We have something else in common...I was also given Torodol in the hospital after day 2 and they discontinued the "real drugs" and narcotic pump....IT WAS WONDERFUL!
It was suggested by my internist (not the famous orthopedic surgeon...DUH!)
However...my internist said that you could only give it by injection, or IV (I forget which)....it is available in pill form, but he said it was not nearly as effective.  It's actually an anti-inflammatory, not a pain-killer, but  I agree with you...it sure does the job and more Docs should know about it and use it.
I'm dealing with a flare-up of my Sphincter of Oddi condition right now...can't figure out what flared it up, but  guess it's something we all just have to deal with.  I KNOW that alcohol is off my list of things I can tolerate....I was never a heavy drinker, but love a martini now and then, and a glass of wine when out to dinner....think that's all over for me, as once the dull pain begins, it lasts days, or even weeks, and I can usually trace it back to eating something I shouldn't have...this time I suspect lots of cheese over the holidays...I had my gall bladder out 45 years ago and never had trouble eating or drinking anything for all those years until recently...
These "Golden Years" don't seem so golden sometimes...
Pat

[paty91356]

P.S.
Torodol IS compatible with blood thinners (at least for a short time), as I was on them in ther hospital when I was given the Torodol....

[MaryRoe]

Are you in Texas paty? I also have a famous OS that does only hips and knees and it is *&%^%$^&* to get into see him. I am on Plavix so he cannot do my knee for another 3 months. He told me to pick the anesthesia I want.  I think I just want a local in the knee so I do not have to retch and be in a stupor for a day or two.  He is only going in there to clean up a mess in the knee...as he put it,"clean up the mess in there".  LOL

Yes, the pills are not like the injection. But, better than nothing.   I wish I could bottle that stuff as people with our problems need "something" and Torodol seems to do the trick with our woes.  

I was given a bottle of egg nog the week before Xmas.  In it had whisky, rum and something else. I do not drink (not against it but never liked the taste). well, I took a small glass of this "nog" and it tasted so good.  So, I took another small glass and the next night another one and so on and so forth.  By, Xmas Eve, I was getting right sided mid pains. Then the ache went around to the front right (not screaming pains) but a dull moderate ache.  Well, it is still with me. I kept thinking it is my kidney, then my lung and then the liver, and of course the bile duct.  It had to be the Fat in the Nog and the liquor in it.  Yes, this can go on for another month until it settles down. My Chest CT scan a month ago showed bile duct enlargement. This has appearred like this now for almost 5 years, to my knowledge.  ERCP is brutal and I had one back 19 years ago and they found a 45 minute delayed emptying duct(whatever than meant) They did trigger the Shrincture of Oddi pain with a narcotic and I thought I would die right there.  They gave me Demerol to counteract it. I had an MRCP a few years ago and this did not show the enlargement but all CT scans of abdomen and Chest will show this.  Makes no sense why one test will show it and not another.  I am too old now for any intervention unless they tell me it is life or death. Got to dwell on my knees and heart issues and thyroid.  If it isn't one thing it is another.  It sure is *%^&^%^&* to get old!  LOL

[paty91356]

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

[cwwgirl]

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 (bronchitis)/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.

[cwwgirl]

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!

[paty91356]

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

[cwwgirl]

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!

[paty91356]

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

[cwwgirl]

Today we are going to try a Chriorpracter(?). A friend's Dr's just KNEW he had kidney stones for severe pain, and long story short... the Chriorp. realigned him and he has been FINE since then. It's worth a shot. Even if some of the pain disaptes.

Duke can't get her in until April, but we are trying several different places. So far, several Dr's don't want to 'disagree' with our famous Dr's findings. Hope to get some ideas soon. This is really weighing on all of us.

Thanks for your ideas you have given me, thus far. BTW, the GI Dr. told me yesterday that 'narcotic's were never proven to be a problem'. And, that those studies were 'outdated information'. HMMMM?! But, there are real folks I'm finding through this website and others that would disagree! :-)

[MaryRoe]

Hi there.

I think Paty in SCalifornia and this Texas Gal would Love to meet your GI doctor and tell him how the cow ate the cabbage.

Every single doctor I have met and discussed my situation knows that certain  drugs can cause a bile duct blockage and delayed empyting thus resulting in  severe pain.  

I wonder if your poor GI doctor is on the same page as all the other doctors...Hmmmmmm!!  Poor thing.

[cwwgirl]

THank you, maryroe, for your support.

I think he is being stubborn and his ego is playing a role in this situation. I should clarify that those comments were not made by the 'top dog', but the dr. who is a "fellow" under him. He does not seem to like the fact that I am doing my homework in order to try and figure out what is wrong with my child. He, of course, does not have children - so therefore, he can not relate. Can you tell I am not happy with him?!!!

It would be fabulous if I could get you both to tell him a thing or two. Don't think he'd be denying the pain's exist then! :-)

BTW, I'm a Southern girl. We can be VERY determined when we need to be! LOL
I am not giving in, just because I don't have the same degrees as they do.

Thanks, again.

[MaryRoe]

Hey there Ms. Southern gal too...lol   Bring that Fellow on.
I will meet him  anywhere.

I recently had an apology from a Fellow here at the heart center.  Yes, most  have BIG EGO's and think they know it all.  What they do not teach in  Med School is COMMON  SENSE!!!

I use to think doctor's were GOD and believed every single word they told me as Gospel truth.  Gads, I needed my head examined.  Now, they don't like me as I question every syllable out of their mouths.  And you need to also.  The most precious thing in  life is a Child.  She is Crystal and Gold and cannot be replaced. Remind them of this, often.  

I need to locate that place in  the midwest that specializes in bile ducts/gallbladder. etc. etc. and post it.  I am not endorsing it but heard a lot about the place and may be something you want to check out...

Good Luck to you.

[MaryRoe]

Hey there Ms. Southern gal too...lol   Bring that Fellow on.
I will meet him  anywhere.

I recently had an apology from a Fellow here at the heart center.  Yes, most  have BIG EGO's and think they know it all.  What they do not teach in  Med School is COMMON  SENSE!!!

I use to think doctor's were GOD and believed every single word they told me as Gospel truth.  Gads, I needed my head examined.  Now, they don't like me as I question every syllable out of their mouths.  And you need to also.  The most precious thing in  life is a Child.  She is Crystal and Gold and cannot be replaced. Remind them of this, often.  

I need to locate that place in  the midwest that specializes in bile ducts/gallbladder. etc. etc. and post it.  I am not endorsing it but heard a lot about the place and may be something you want to check out...

Good Luck to you.

[cwwgirl]

Would love to know the place you refer to in the Midwest. Let me know, if you think about it. OK?

I love your spunk! Your comments made me smile....
Thanks!

[MaryRoe]

Hi there.  I found it.  AND, it is not in the midwest.  It is in Jacksonville, Florida.  

Here is the website:  http://www.borland-groover.com/

I may be contacting them myself.  You may want to read up on them and perhaps discuss this with your doctor or make a call about your daugthter's case.   Good Luck to you.

[cwwgirl]

Thanks! I will look into it. J'ville is only 2 hours from where we are located, so that could be great!

Good Luck to you, as well....

[memej]

maryroe,
i just read your post, and what you have sounds alot like what i go through. I will be doing okay, then, out of the blue, I start having attacks, this squeezing feeling under my breastbone, I have to get a couple of pillows and bend across my bed to even get through these attacks. These all started a couple of years ago, I had already had my gallbladder removed, then these started, they checked me out for everything!! I finally found a gastro dr that did a ercp, and while I was under anesthia, they made me have a attack, so while in there, they clipped that muscle half into. Now these attacks are coming back. In Nov, while trying to learn to snow ski, I fell and cracked my arm, they prescribed a pain medication, forgot what it was, I took one that night and spent the next 4 hours having attacks at home!! It was horrible!! Now the attacks seem to be coming more frequently, I notice I seem almost bloated like, dont go the restroom very regularly, and it seems if I get just a little hungry, it can bring on a attack, I just hate this, I thought after them cutting the muscle, it would be fixed. They did give me nitroglicerine tablets to keep with me  to place under my tongu when I have an attack, but they give my AWFUL headaches, and it seems like sometimes it dont really knock the attacks out. I'm so discouraged, my husband wants me to go to the ER when I have one, but I figure they wont help me, I figure by the time I get there, it will have eased up or something, I just never know. Its just amazing that someone else has what I have. But, yet no doctors seem to usderstand it, or that there is nothing they can do.

[MaryRoe]

You are right. Most ER rooms will give you a shot of "something" to quiet the pain, tell you to see a GI doctor in the morning or ASAP and send you home. Been there.  Done that.

I have lived with this mess for over 25 years.  They tried giving me Nitro many years ago and I refused it as I figured it was for the heart and not the belly.  Well, it can be used for both the heart and the GI tract.  I haver since been on Nitro now as I can pretty much distinguish my heart pains from the Bile Duct spasms.  I will pop a Nitro if I tink I am having a heart related pain and it works 100% of the time for heart pain but if I take one (did a test) for tummy pain...it did not work as well.  Barely touched the pain.  Wjen I had my ERCP they also triggered an attack and I htought I would fly off the table but they quickly gave me something to quiet the pains.  They did not do any cutting but told me to go toa place in racine, Wisconsin to get the Sphincture cut.  I did not go there as I was petrified to leave home.

I gave CCgirl the name of the borland-grover clinic in Florida and what I have heard they are suppose to be experts in this.

Get on their website and read up on all they do and who their doctors are.  You may want to consult with them via mail and also tell your doctor about them.  They very well may be able to help you.  I live in a Big City but to my knowledge there is no one here that knows much or better yet...can do much for this problem.  This is why my ears perked up when I heard about the clinic in Florida but then I had heart stsents put in and I am not sure if these doctors would take me on as a patient.

Paty and I mentioned that seemingly an Injection of Torodol really helps with these attacks and does not cause a Sphincture of Odie attack which is WORSE than having a 10lb delivery with no epidural.  These attacks are brutal.  I passed a kidney stone and it was a breeze to these attacks.  Good Luck to you.

[tuff case]

I have had 2 ERCP's the first one They found the "Oddi" value need to be cut.  When this did not relieve my symptoms completely my GI sent me to his mentor at University of Chicago.  Where he could also measure the pressure build up of the pancreatic value.  He then had to cut the pancreatic value and also cut more of the "S Oddi" valve.  After the 2nd procedure I continued to have what felt like a release within my abdomen for more than a year.  This would occur and last only seconds but pain was pretty severe.  I do not have the pain any more except for maybe once every 2-3 weeks.  You may want to find out if the pancreatic valve was check when they cut "S Oddi".

Good Luck and God Bless..
Amelia

[shannonv33]

This has been me all along.. ever since I had my gallbladder out last year in april. I keep having these attacks and the pain pills I take always seemed to make it worse. I never knew if it was just me because no one else I have talked to ever had this problem. I have tried vicodin,darvocet, and percocets....and all seemed to make my attacks worse. I have had tons of tests and my next one is suppose to be ERCP. I also have the attacks if I go with out eating,stress, smoke to much, or certain foods. Its so nice to read others like me, is there any sites that tell what pain pills cause these attacks? I would love to print it out and take it to my doctors. I am also on a web site for people with SOD and pancreatitis.....they have been great but none of them have had the problems with the pains pills like me. If any one wants to chat more about this the group is called TPP, or the pancreatitis place. Also you can email me at women_2020***@****. Would love to talk to others with this problem. Thanks so much.....

[MaryRoe]

When my attacks started soon after my gallbladdeer surgery many moons ago...no one knew why..not even the surgeon.  But, I recognized that certain meds could trigger these S/O attacks. EVEN over the counter LOMOTIL.  ALL opiods and derivitives pain meds, i.e. morphine, vicodin, percocet, codeine and this family of meds, will set the stage for a repeat performance. I avoided them like the plague and will never touch them.  I was introduced to a Torodol pain injection a few years ago and that med is the only med that did not start an attack. About 5 years ago a well known surgeon asked me about these pains.  He recognized them and then I knew what they were called....Sphincture of Odie spasms (closes up) causes delayed emptying in the bile duct and yes...narcotic pain meds can cause these horrific attacks.  Why?  God only knows. I feel your pain.  I will go to the other site you mentioned.

[georgie439]

I'am relieved to know there are others! We may not be exactly the same but we share some common ground!!  
Cwwgirl, listen I believe your Dr. has to be wrong about the narcotics!!  I would sneeze as a youngster when given cough meds w/ codeine, for coughing.  When I got older I had a severe back injury(I mean severe) went on vicodan and percodan. Guess what had to go on dilantin, cause I was having grand-mal seizures in my sleep. Funny I needed detox for the pain meds, but when I got off, seizures stopped!! Sorry to say that I did go back to pain meds, and I take seizure meds, Gb out in 2002, but had pains in that area for years, pain subsided for about 6 months, then came back.  MaryRoe I beg you to e-mail me, I like you had dilated ducts, was so scared from everything I read on the internet, still am, I had to have the ercp to make sure no tumors, they did several biopsies they were benign, my gastro wasn't scared but I was glad he did the biopsies. Patty my pain seems to be like yours dull and can last awile but pain meds definately aggravateit. I want to speak to my dr. about helping me get off pain pills, been on them so long, It would be easier if the detox drs. believed me but it is not necassary for me to succeed. MeMej- I also sometimes get the pain under the breastbone, sometimes interferes with breathing!!  My email is
***@****   I really hope to hear from you especially Maryroe, I believe you can really help me

[cwwgirl]

Well, I've been meaning to find this website in order to update all of you who have been so great in trying to help us with ideas.
It's been a LOOOONG winter here in the South!!!

Update is as follows:
My 10 year old (next week she will be 11!), was in the hospital at Duke for almost 3 weeks. We did the 'backdoor' thing and through ALL of the testing, the final outcome is "Unknown Chronic Biliary Pain" (most likely, nerve damage from her past gallbladder removal/subsiquent bile duct stone's...aka, ERCP's).

This poor child has been through every test under the sun, but they finally ruled EVERYTHING out and put her on Neurontin. It, for now, has been the MIRACLE drug! She takes it 3x/day and is at 9ml's per dose. Hoping to gradually get the dosage down.

They even did another ERCP, even though all of her bloodwork and CT scan was normal. They, like us, felt they were backed against a wall and HAD to rule it out. That was the frustrating part.... all of her tests kept coming back normal! Don't get me wrong we were THRILLED that she didn't have anything wrong like the other children on the floor.... but, it was still frustrating to not KNOW what was wrong with her. She was in such debilitating pain.... It was a relief to find out that she did not have anymore stones. Can you say "NO MORE STONES?!!?!".

The narcotics definately are not something she can handle. According to the NeuroSurgeon, she is one of the 'rare' individuals that reacts with convulsion type movements after a few days on narcotics. She was on a couple of narcotics (for lack of anything else they were able to give her, since she'd start the convulsion movements). Toridol, after the 2nd dose, she became allergic to. The main thing with the narcotics..... it made her pain worse!!!!!!!!! I don't care what ALL the doctor's said, but narcotics effected her pain the most!!!!!!!! Meaning, it worsened!!

Does/has anyone taken Neurontin???? Let me know. I hope you will find some relief in your attacks. This is a 'miracle' for us at the moment. 4 weeks ago.... I felt like I was bringing home my 'disabled' daughter (it took a couple of weeks after being releaased from the hospital for her to have NO breakthrough pain).

She is now back in school and running and playing like the normal child SHOULD be!!!!!

Good luck to you all. Our prayers are with you........
your Southern Belle pals!!!!

[artlover4ever]

hello (mostly )girls.
i've found this site tonight and have read your posts with interest and a sense of community.
my SOD - Sphincter of Oddi Dysfunction has brought me here - as your stories have enticed me to post my own drama.
here goes...
after MUCH time passing - lots and lots of visits to the ER and my gastro doctor being exhausted by the extreme pain i was suffering - constantly - for 2 years - i switched doctors....
(why is it that some women - like myself - have some sort of WEIRD loyality to doctors who don't seem to REALLY help?...oh, the tales i could tell - oh - my story that has been woven..WHOA)...anyway....
my new doctor suspected SOD and send me to Indiana University.
Dr Stuart Sherman - who heads the ERCP clinic at their medical school is a famous doctor around the world. that is ALL he concentrates his medical expertise on......ERCP's and the pancreas. He travels the world teaching and lecturing on the problems associated with Sphincter of Oddi Dysfunction and all the other ailments of the pancreas.
my story seems similiar to all of yours. constant pain and constant runs to the ER - only to learn - with practice and extreme frustration that the ER is only a 'patching up' game and the ER docs cannot do much of anything except patch us up - get us - temporarily - out of extreme pain - then pass us on..(i wonder sometimes about those ER docs......such infinate possibilites for pain....i'd think those guys would want to figure OUT the problem instead of being the 'bandaid bandits' - that just drug us UP and show us the doorN)...
so.
after being in constant pain for two years. NOT working and losing ALL of a life - i met Dr. wonder in Indianapolis.
i've been GREAT after my ERCP and some other funky stuff that he did while doing the ERCP - but i cannot pronounce the words - and i don't want to look the fool - but i've been extremely well - with NO pain for about 3 years.
until this past Thanksgiving. then WHAM. the illnesses are back.
full force.
my question - besides the pain and stress of BEING in pain - do any of you feel like you have a LONG case of the flu?..i swear - initially i thought that was all that was wrong with me. i thought that i just could NOT get over the flu. but, then - when the pain became - full force - then i knew i was in trouble again and it was my pancreas.
so. do you guys feel likd you have the FLU. body aches, nausea,
HUGE GENERAL overall feeling of ILL HEALTH?
now.
my REAL reason for this post...have any of you heard of the ERCP clinic at Indianapolis with Dr. Stuart Sherman?
might i suggest that going to a WORLD SPECIALIST on your pancreas might be a good - no  a GREAT idea for your future - if you have found that no other doctors in your area - nor any medical institutions are not getting you - up to par - and feeling better.
tell me - what do you guys think?
signed.
this ART LOVER in Ohio - Elizabeth

[georgie439]

Hi do you know if the Dr. takes medicade?? And yes its horrible, I'am not the same person anymore, I feel like I aged went from 43mom to 83great-grandmom in 6 months. Email me ***@****
as they will probably close this thread..georgie

[marykayj]

I am so thankful I stumbled onto this web site.  

I have been sick since September 05 with horrible pain on my right side & major weight loss (63 lbs. so far, and I'm not that big of a person) since almost everything I eat puts me on the floor with pain.  I have been to 3 GI's.  The first one said I had IBS and dismissed me, the second told me it was in my head and I walked.  The third doctor, I believe, will help me.  I have S.O.D, pancreatic insufficiency, and common bile duct stones.  I am scheduled for a HIDA Scan Monday morning and in the afternoon, an ERCP, with removal of stones and placement of a stent.  The next day I see pain management experts.  After reading some of the entries, I am a little hesitant about the ERCP.  I do know that I cannot live like I have had to for the past 6 1/2 months.  Would it not be worth the pain in the short term instead of living in constant pain for the long term?  I have no relief.  I have a constant nagging side ache.  When I eat, it is much worse.  I have learned what I can eat and how much to avoid severe pain.  My Doctor put me on enzyme replacement, which has helped some.  I do have a little more energy and I do not have the feeling of starvation soon after eating.  The weight loss has also slowed.  Only 1/2 lb. in 4 days.  Not bad when it was averaging 1/2 lb. per day.

If anyone has any words of wisdom for me, I sure would appreciate them.  Talking to people who have similar problems sure has helped me alot.