Pain in left upper adbominal area and back after Lap Chole in June

[janeygirl]

Has anyone had the Sphincter of Oddi Manometry testing done? I have been having severe burning, radiating pain in my left ab and back for about 8 months. I had my gallbladder taken out and now am having the same symptoms as if I still had my gallbladder. I have been told by a GI doctor that he thinks that I have Sphincter of Oddi dyfuntion. I am now going to be sent to a specialist to have a ERCP and Sphincter of Oddi Manometry test done. The GI doctor feels that this my have been my problem all along and that it is possible that that is what caused my gallbladder to go bad. They never found any gallstones when they removed my gallbladder. I have been treated for everything from depression to ulcers and have none. Yeah, I am depressed, I am tired of being in pain and no one taking me serious. No test so far has come back abnormal, only the MRCP showed that I have a dilation of the biliary duct. That is what is prompting them to send me to a specialist to do the ERCP. I would like to know if anyone has had this done and what the outcome was for them, Please let me know. Janeygirl

[EliDale]

I have had this same pain as you refer to for a few years. No one has been aboe to figure out things.
Every test has seemingly been done-except that which you refer

[Lor]

I had the ERCP with menometry done in April this year. I can tell you it took my pain away instantly. If you are going to have the menometry done you should almost plan on spending a few days in the hospital. The risk for pancreatitis is high with menometry. Pancreatitis is very painful. I did get it, but I can tell you it was worth the pain. Anything to get rid of the pain I had been feeling for a year and a half. Every test I had prior to this came back normal. The Drs started thinking I was making up the pain. The pain was caused from the pressure in the duct. The sphincter to my bile duct wasn't opening enough to let the bile out. Yes it did cause my gallbladder to go bad in the first place. I feel at some point it would also cause my liver a pancreas to fail. If I let it go and just lived with the pain. I am now starting to feel the pain come back. I will at some point have to go back and have the sphincter cut again.

[5fan]

I can't believe how similar our symptoms/problems are.  I had gallbladder surgery in mid-July.  Ever since I have suffered from pain in my upper right quadrant which radiates through the center of my chest and up under my right shoulder blade.  Within the last 3-4 weeks I have noticed that I also get stabbing pains in my left side (they last for a short period of time usually).

I ended up at the ER when my gallbladder went bad (I was to dumb and thought the pains would just go away - what an idiot I was).  Any way I ended up with pancreatitis and was hospitalized for six days.  It took that long to get my pancreatic and liver enzymes within a range for them to remove the gallbladder.  I underwent numerous tests and no stones were found.  The doctors thought it was a little weird that the pancreatitis was present without stones, but even during surgery none were found.  Unfortunately during my surgery they nicked an artery and I ended up with a 4-5 inch scar where they had to go back and repair it.  Post surgery for me was quite painful.  

I also ended up with a fever and nausea after the surgery.  My surgeon sent me back to the hospital for a sonogram and bloodwork.  Nothing showed up.  My liver and pancreatic enzymes were almost back to normal and my white blood cell count was okay.  I took Augmentin for 10 days and was prescribed Pepcid because the surgeon thought I may have had a minor ulcer due tot he surgery.  At my next visit with no relief the surgeon referred me back to the gastroenterologist I had seen in the hospital.  The gastro was called in bacause they wanted a consult on an ERCP.  He flat out told me that he didn't want to do one because of the risk of pancreatitis and the fact that I already had it made the risk too high for what he liked.

He sent me for a number of follow-up test to see what he could find out and in the meantime started me on medication for irritable bowel syndrome.  He explained that all tests could come back normal and it could be IBS and I would just have to learn to try to control it and live with it because there is no "cure" for it only "treatment".  this was in the middle of August - one month post-op.

All the tests he sent me for showed was that I have severe gastritis.  He put me on Nexium 1X a day along with Librax for the IBS 3X a day.

I ended up back at the ER at the end of September with what I could have sworn was another gallbladder/pancreatitis attack.  I was admitted by my general practitioner for testing to see if they could find out what was causing the problem.  Six days later I was discharged with no answers.  They had increased my Librax to 5X a day, Nexium 2X a day and added Reglan 3X a day.  I felt like a pill popper.  During my six days in the hosptial the second time they did a series of abdominal x-rays, a gastric emptying test, a small bowel follow thru and a MRCP.  The only thing that showed was a slight dialation of the bile duct which according to the doctors is not uncommon in a post gallbladder patient.  Unfortunately I never got to see my gastroenterologist while I was in the hospital (only all of his partners).

I did have a follow-up with my Gastro a few weeks after I was released from the hopsital and he flat out told me he doesn't know what is wrong with me.  He asked me to got to a specialist to find out about Sphincter of Oddi Dysfunction.  My appointment is on December 20.  I live in Florida so I'm going to Shands Hospital in Gainesville - it's supposed to be the best in this area.  (It took me three months to get an appointment).  

It sounds like the doctor I will see at Shands will do a clinical assesment and then decide whether or not to proceed with the ERCP with manometry or whatever other tests he decides are appropriate.  Right now I'm just hoping he decides to do something.  I'm sick and tired of being sick and tired.  Within 30 minutes of eating I know the pain is going to start.  My gastro even gave me Darvocet for pain because he doesn't want me using Tylenol or other over-the-counter pain meds to try to control the pain - bad for the liver and kidneys - and my regular doctor just told me this week that they can cause spasms of the sphincter of oddi also.  I haven't specificially heard this before - I did know about the liver.

I have also been collecting my medical records for my visit to the specialist and have been surprised about some of the information in them that I didn't know.  Come to find out I have a hiatal hernia, fatty infiltration of the liver, a cyst on/in my kidney and none were ever mentioned to me.

Don't get me wrong, I feel I have very good doctors, but I guess now that I have spent four and a half months not feeling well I really want to know why and I want to know what these other things in my records mean.  Maybe they didn't mention them because they are no big deal (from the research I've done that appears to be the case), but I have found that you have to be your own advocate.

I have read that there is up to a 20% chance of pancreatitis with an ERCP and that risk jumps to as high as 40% when you add the dye and pressure measurements.  I don't know what you have found, but with all the information out there it's kind of hard to read between the lines.  One source quotes one set of risk percentages and then you go to another source and the percentages change.  All I know is that after having pancreatitis once I don't look forward to having it again, but I can't stand to live with the pain I have now on a daily basis so it appears that if the doctor wants to do the test I'll agree and take my chances.  At least I know what to expect from the pancreatitis and I know that it will go away - unlike the pain I have now.

Sorry this post is so long, I just had to give you my story because when I read your story had to look twice to make sure I wasn't the one who posted it.  

BEST OF LUCK and I'll post what I find out when I go to the specialist in two weeks.

5fan

[janeygirl]

After reading your comment, I would highly suggest that you talk to your doctor about a being sent to a gastro doctor and asking him if a sphincter of oddi manometry test could be done. I can tell you that I have been through every test this year and I truly believe that this sphinter of oddi dysfuntion is what has been wrong with me all along. I will know for sure when I go to see the specialist at KU Med Center in Kansas City. Don't give up on your fight to pain relief.

[janeygirl]

When you had your sphincter cut, did they do that procedure during your ERCP?

[janeygirl]

I will be very interested to hear how your appointment on December 20th goes. I am also going to a specialist that is taking me three months to get into. I can't get into the specialist until February 26th. My specialist is going to be 3 hours from where I live. They are referring me to KU Med Center in Kansas City, KS. I was amazed at how alike our symptoms where. I have also been to the ER and put in the hospital for pain control. Right now, I am not taking any medications, I refuse to just keep popping pills until they find out what the problem is. I asked the doctor what I am going to about pain in the meantime while I am waiting to see the specialist. They just kind of looked at me, like the pain in just in my head. I am tired of being jerked around by doctors that are just guessing what the problem is. I am hoping that the specialist that is going to do the ERCP and sphincter of oddi manometry test will finally find the answer. I am only 39 years old and have really had no other health problems. I now that there is something wrong inside my body, this pain in my left side and back is not normal pain. This has been worse than having my two children years ago. I would very much like to communicate with you on your progress with your doctors. It is wonderful to know that I am not alone and this pain is not all in my head as they try to tell me. Best of luck to you and if you have questions, please write back to me.

[Zoie68]

I have posted on this forum several times in the past regarding the sphincter of oddi dysfunction.  This is truly what I think I have, although I cannot convince any doctor of that!  All the pain started immediately after my lap surgery for gallbladder removal (that only contained "sludge").  I am seeing my 3rd gastro doc now and he is putting me through the same "take Nexium and come back in two months" kind of treatment.  The pain for me is almost unbearable.  My next appt to see the GI doc is in January and he says if this last round of meds has not helped he would possibly do the ERCP w/sphincter manometry.  I can tell by his tone of voice that he doesn't want to do it at all.  He even asked me on my last visit if maybe I had tried anti-depressants for the pain!!  GRRRRRRRRRRR!!!  By all rights I should be on anti-depressants by now from having to deal with unsympathetic doctors!!  I certainly want to keep up with everyone's progress.  I know that I am not alone in this but sometimes it feels that way.  Thanks for listening.
Zoie

[janeygirl]

After reading your comment, I can relate to your pain. They have tryed to treat me for depression also. I can tell you that Nexium does not do a thing for my pain. I am in so much pain that sometimes I think that I am going to go crazy if it does not stop. I am to see a specialist in February for consultation to see if they will do an ERCP and Sphinter of Manometry procedure to measure the pressure of the Sphincter muscle. I believe this is my problem. I just can't get any doctor to get on the ball and get something done. I was in pain for 8 months before they did a Hida Scan and then took out my gallbladder in which I have never had any stones. I can tell you that you are not alone and would to happy to correspond with you on this matter.

[Marlasinger3]

I have been in the same situation as the rest of you.  I dumped my first GI when he said just live with the pain and had my gallbladder removed through my Gen. Practicioner.  I am 20 and have an extremely high tolerance to pain (been so ill with a kidney infection once that I needed to be in the hospital and didn't know it until a routine checkup).  So I returned to the doctor complaining of pain, and he suggested another GI, that my gallbladder must not have been the problem.  
I'm a full time student and work partime so I don't have time for constant visits to the dr like I did originally.  I've decided just to live with it, which is difficult being in culinary school, but that's what the doctors all tell me to do anyway.
Is the ECRP really worth all the trouble?  I've heard so many people that through everything the pain is just there forever.  I've run up over $10,000 charged to insurance, had to pay about $500 additional.  More tests just seem like more money with no results.  Am I just being stubborn?

[gardenmaniac]

My daughter is 19. She has had intermittent stomach pain all through high school and into college. At the end of her senior year it was escalating and we started the whole testing process. Treated for ulcers, checked for H. Pylori, all the acid blockers, Prevacid, Nexium, Aciphex..you name it..also Carafate. Then an EGD, small intestine biopsy and then an Ultrasound. All negative. GI prescribed Bentyl for spasms & diagnosed IBS. That was 18 months ago. The meds helped sometimes..most of the time she just lived with being sick & kept on with college. Had a lot of pain this summer, found out the GI doc had diagnosed IBS (which He NEVER told us...) & she went on a pretty strict diet...it helped quite a bit. (trouble with a strict IBS diet..it will work for several digestive disorders...like gallbladder) Then in August, the first week of school..had a classic GB attack. Went to the med center, waited 2 hours, went home without being seen. Now 100 miles away, started with new GI..blood work, EGD with Biliary drainage to check for crystals (negative) and then a HIDA scan, 32%. GI doc said "nothing organically wrong" & fluffed it off. Took her to a surgeon..he ordered a small bowel follow through and another HIDA scan. The results of the 2nd HIDA (at a different hospital) came back thursday..now the GB is at 8%.(6 weeks later) She has no stones or sludge that we know of. Obviously, the GB is failing & she is getting worse. Waiting for the surgeon to let us know what the next step is.

So....i have done enough research to know that something is causing the GB to fail...but now that it has, it will have to come out, right? I am pretty worried that she may have some other problem like SOD, but I am hoping that I am wrong. The surgeon has said that only 60% of patients without gallstones will have relief from cholecystectomy. (at least when it was working at 32%)..

For all of you out there that had no stones or sludge..what was your HIDA %? Any thoughts on the subject?

[5fan]

I am interested to find out what everyone comes up with as a diagnosis.

One question I wanted to ask was if anyone found they have more pain or the onset of more severe pain with lifting; reaching over your head or doing a lot of bending?

Unfortunately I have discovered that the more active I am the more pain/more severe the pain is.

BEST OF LUCK

5fan

[Zoie68]

My pain is much worse when I have been active like lifting, or major housecleaning.  Just recently I lifted some files and things at work....next day I was in bed for most of the day with pain.  Sometimes a heating pad to the back helps.  And too, like yours, my pain goes straight through to the back and up the right shoulder.  I constantly stay sore in these areas because my pain is daily.  I have also noticed that my pain increases during menstruation.  Has anyone else noticed this?
Zoie

[PJR]

I have had the same symptoms and have found that i get more pain when I make a sudden movement or the more avtive i am, the more pain i have.  I first thought it was my heart, but when they ran several cardio tests, they all were normal.  I have had many tests and no luck.  Hopefully i will find the right GI doctor and will find something soon.  Going on 2 years now with this pain off and on.  You find anything out that may help, please email me at ***@****

[TOOTINA]

I HAD MY GB OUT IN FEB. 2000. HAD MORE PAIN AFTER GB WAS REMOVED THAN BEFORE. THE SURGEON HAD NEVER SEEN SOMEONE AT MY AGE SO DILATED..THE ENTIRE BILIARY SYSTEM. MY HIDA SCAN SHOWED 5% FUNCTION. ALSO, MY GB WAS VERY THICK,ENLARGED ..BUT NO STONES. SO, I WAS SENT TO GASTRO WHICH DID A MRCP..WHICH SHOWED ENLARGED BILE DUCT. THEN HAD A ULTRASONIC ENDOSCOPY...SHOWED A BLOCKAGE..THEN ERCP...COULD NOT FIND THE BLOCKAGE..SO HE SAID I HAD IBS AND THE PAIN UP MY BACK WAS FIBROMYLAGIA (fibromyalgia)...RIGHT???
WENT BACK TO MY GP..SHE PUT ME ON QUESTRAN LIGHT ..BID...WHICH REDUCES THE BILE FLOW TO THE GUT...WHICH HAS HELPED ...GREATLY..SHE STILL BELIEVES THERE IS BLOCKAGE....BUT I AM TIRED OF DOCTORS AND TELLING ME IT IS ALL IN MY HEAD...YET, NOONE CAN EXPLAIN WHY MY BILIARY SYSTEM WAS DILATED TO SIZE OF 90 YEAR OLD WHEN I AM 38....WELL, HOPE THIS HELPS...YOU ARE NOT ALONE.

[Marlasinger3]

I have noticed that not only has my pain been related to activity, but also stress.  Before all my GI problems I was having trouble with daily migraines (we thought maybe all the meds I took for that caused this).  Now it seems like when the abdominal pain appears, the headaches come shortly after.  Is this just my body reacting to the pain?

[janeygirl]

For me, it does not matter if I am active or not. When my pain is at its worst, doesn't seem to matter what I do, it still hurts.

[janeygirl]

My hida scan showed my % to be. I was told that anything below 35% is considered to be abnormal. That was the test result that prompted the doctors to take out my gallbladder. I have never had any stones in the gallbladder or the biliary duct that they have been able to find.

[janeygirl]

I am sorry, my hida scan fraction was 33%. I forgot to put that in my earlier comment.

[Lor]

My Hida scan can back at 15%. The onset of severe pain came shortly after surgery. Wether or not I'm active didn't make a difference. For me it was more severe on an empty stomach. Plus it intensified around my period. Laying down can bring the pain on. People with SOD have problems with duodenitis(sp) Which would explain why the pain with an empty stomach. I did not get relief from acid reducers, muscle relaxers, pain killers, calcium channel blockers or antidepresants(it wasn't in my head)

[nonnie2]

I am 8 months post Lap Chole and started having problems back in Aug.  I have an annoying (not severe)discomfort in my upper right ab area, and also pain in my right upper back.  I have alot of tenderness in my sternum and lower right rib cage, and I noticed that it seems to be worse with alot of activity.  Like you, I've noticed that it seems worse while I'm having my period.  I've been to my doctor about it, he seems to think it's a combination of adhesions and some sort of muscluoskeletal issue.  (I have a follow up appt 12/30) I thought I was imaging it until I read your post, I don't feel all alone now.  Are you fatigued at all?  Thanks for your comments.

[nonnie2]

I am 8 months post Lap Chole and started having problems back in Aug. I have an annoying (not severe)discomfort in my upper right ab area, and also pain in my right upper back. I have alot of tenderness in my sternum and lower right rib cage, and it seems to be worse with a lot of activity. I've noticed that it seems worse while I'm having my period. I've been to my doctor about it, he seems to think it's a combination of adhesions and some sort of muscluoskeletal issue. (I have a follow up appt 12/30) Does anyone else suffer from these symptoms?  I'd appreciate any comments.

[Zoie68]

Hi nonnie,

I have had a lot of fatigue since my surgery which has been over 2 years ago.  Mostly I think because of pain.  My lap surgery did not go well because I too had lots of adhesions from a previous appendectomy I had done as a child.  I have often wondered if this could be my whole problem.  And I wonder exactly what can they do about adhesions??  I do have spasm type pain at its worst but then when I am not hurting I have just a general soreness in the ribcage, chest, and back.  I guess my greatest fear is ending up in a pain management clinic once a month for the rest of my life waiting to receive my next narcotic pain prescription.  Please let me know how your follow-up visit goes.  And too what you are taking now for your pain.
Thanks
Zoie

[nonnie2]

Hi Zoie,
Thanks for responding so quickly.  I've had a pretty rough weekend, just felt lousy and pain.  Right now the only thing I take is either Tylenol or Advil neither of which help much.  This morning I was putting on my make-up and just the motion of lifing my arms caused my upper back to spasm!  Before all this started I was walking 2 miles a day and felt great.  I still walk just not as often, other than the ailments I've described I'm fine.  My biggest fear is that I have something serious, when I see the doctor again I'm going to insist on further testing.  I'll keep you posted.

[Kim32]

Hi, I had my gallbladder taken out exactly 4 weeks ago today,
and ever since then i have had chronic pain.
My upper stomach hurts (feels like a burning/knawing pain) and so does my chest and back.
I had heartburn, stomach and back pain, plus nausea while i still had my gallbladder, but the pain wasn't like this, it's much, much worse now!
I had gallstones so i had to have my gallbladder taken out/plus because of the symptoms.
Well this burning pain is just constant.  I just cry all the time because i'm in so much pain.
The doctors think that it must be acid reflex, so they told me to take nexium.  Well that isn't helping me at all!
See before i even knew about having a diseased gallbladder i had to go to 3 different doctors before actually finding a doctor who would do some tests to see what was wrong with me. The 1st 2 doctors that i saw didn't do any tests, all they said was "oh it sounds like you have acid reflex, take the nexium".
Well the 3rd doctor finally had me have a ultrasound (which showed gallstones) plus i had a positive blood test for gallbladder disease.
Well 2 days after my gallbladder was removed, i got this non stop burning pain in my upper stomach and chest area.
It hurts to the point on where it brings tears to my eyes! :-(
I have been to the Emergency Room Twice now since my surgery (November 19th was when i had my gallbladder taken out)
and I have seen a Gastro Doctor and he had me have these tests done: "blood and urine tests, chest and stomach x-ray, EKG, scope, CT Scan, and Hida Scan" and all came up normal.
I have been on the pain medicine "Endocet" since the surgery because otherwise the pain is so darn severe that i just can't cope! :-(  I told the doctors that i do NOT want to live off of pain medicines for the rest of my life! (Plus they don't work 100% anyway). Do you think that it could be the cause of "Oddi Dysfunction"  Couldn't they tell by the Hida Scan tho if it wasn't working properly?
Maybe i do have a bad case of Acid Reflex?
I'm going to see a new doctor this thursday because my previous doctor just gave up on me.  Plus I'm almost out of pain medicine and I wouldn't be able to cope at all without it! :-(
Sorry so Long! Kim

[Zoie68]

So very sorry to hear about your pain.  I am told that in order to diagnose Sphincter of Oddi dysfunction they must do an ERCP with menometry (or pressure testing) of the sphincter of the bile duct.  I have not been able to get this particular testing done yet but there are several others that have posted to this board that have had it done.  Hang in there with those docs and don't give up!  You are not alone in your pain and frustration and you've come to the right place for advice.
Good luck and take care,
Zoie

[krisg]

Sorry to hear about everyone's pain.  I too suffer from SOD.  I am also female (35).  My sod pain worsens around my period also.  I too thought this was strange until I recently read an article on sod dysfunction.  It is at www.joplink.net/prev/200111/04.html.  It is a very interesting round table meeting of numerous drs.  I gathered even more information on this disease. I also found out that sod is part hormonal (which would explain more severe episodes during the menstrual cycle!)  I am finally working with a dr. who believes me (about my pain) and firmly believes that I have sod.  He is very concerned about me getting pancreatitis after the sphincterotomy but he told me I can't live like this (pain on a daily basis and popping pill after pill trying to keep from going to the er room).  My only downfall is that my dr. is now 1000 miles from where I live.  I will be traveling early next year to have the surgery. I get tears in my eyes just thinking that I might actually be pain free (even for a little while) since my gallbladder surgery (4 1/2 yrs. ago).  Thanks for all the info. and support on this site.  I know I'm not alone and that we can all share what little info. we have to try to get through this!

[toBethany]

ERCP, good choice.  Might cause an inflamation (inflammation) of the pancreas, but don't worry too much if you have never had pancreatitis.

If you do have a Sphincter of Oddi problems, avoid Morphine based pain relievers.  There is enough evidence that indicates Morphine will cause spams of that sphincter.

Bethany