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Avatar universal

Pain in RUQ that radiates towards back

I've had this pain on and off for past two years since my gallbladder was removed.  I've had 4 ERCP's to remove a stone and when they get there they say the stone must have fell out when they went in because they didn't find it and they just get sludge.  Then within a month the pain starts back up again and I'm in agony but for several months doctors say it is just IBS until the liver enzymes start acting up again.  About a month ago it started again and this time the ER doctor even said I looked yellow but liver test only showed slightly elevated enzymes.  For the past few months I've had diareria continuously, so bad that it caused hemoriods to bleed for two weeks.  This made gastro doc order virtual colonoscope but it showed only moderate distention of colon and small amount of fluid in right side of colon. I've had a cholecystectomy done I think it is called to widen the bile duct and open it due to blockage.  My question is could this pain be caused by this stone that could still be there?  Is it possible that they just pushed it up in there somewhere and are missing it somehow even with ct scans?  I'm miserable and would love to have an answer for this misery.  I have had the IBS symptoms before and this is nothing like it.  It is much more severe.  I've taken two vicodin 500mg for this pain and it doesn't phase it.  The hospital has also given me pain shots that didn't phase it when it hurts bad so I don't see how IBS can be that bad and does IBS elevate liver enzymes?  Also I've been losing weight over the past few months.  I've went from 160 to 140 pounds which is good but I'm tired all the time and sick at my stomach a lot.  Can't eat very much at a time.  Everything seems to make my stomach hurt.  This can't be normal for IBS is it?  Just seems like since my pancreatic duct first got blocked my stomach has never returned to normal.  It is like my pancreas is always hurting or I when I had pancreatis if that makes sense.  Is it possible that my pancreas has something to do with this?  I guess my main question is what else can I ask to have done I've had ct's don't know what to do? Should I just give up? No one here can seem to figure this out but I did schedule one more appointment with a university doctor in hopes to get an answer.  Still, I hate to keep wasting money if there is really no other tests to be done.  We do have a family history of cancer and fructose intolorance if that could cause any of this?T hey haven't really tested the pancreas but they did test the liver once and said it was fatty if that helps.
13 Responses
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Avatar universal
Sounds like you are right!!  Another doctor who specializes with ERCP  (one who has done many of these procedures with success).  The docs who are best are usually at university hospitals.  Just my personal experience.  So far I have been to 3 university hospitals and the third one seems to have worked best for me.  Good luck and I hope you find some answers.  SOD is extremely painful and "feels like a heart attack".  That's how it has been for me anyway.
Helpful - 0
Avatar universal
Thank goodness I am not crazy either.  I too had my gallbladder removed.  It has been a year now.  I continue to get severe RUQ pain that comes and goes.  When it comes it feels as if I am having a heart attack.  The chest pain is about 24/7 when it is present.  Has anyone experienced this symptom?  I had this pain before GB surgery.  My doc attributes this new pain to GERD and IBS.  Sounds like it's time to get a new doc.
Helpful - 0
Avatar universal
With so many people including myself having the upper and lower GI problems, I know besides myself there has to be a lot of us being told to go on "liquid diets". Is there any hints to this?
I know juice and jello but what else is ok? How about yogart, ice cream or the flaviored coffees are these ok or is the dairy part a NO NO?? Also is fruit in the jello ok? Would this be a good time to own a juicer, or is veg. juice ok?? What soups are ok?
Please help I am fast getting tired of jello and fruit juice and feel like I am going to float away.
Thank you for any and all help.
Bev.
Helpful - 0
Avatar universal
I finally don't feel crazy!  Desperately searching web to find out what my problem is, thanks to others for sharing my exact symptoms.  I'm a 33 YO female. Had my gallbladder out 2 years ago.  Persistant pain in RUQ, right under ribcage ever since.  Radiates around through back.  Knot on right side that can be felt on physical exam by GI doc, but negative ultrasound, CT, no stones "left".  Lower GI series 8 months ago showed overgrowth of eosinophils & lymphocytes, benign polyps, but otherwise normal.  Upper GI normal.  Severe diarrhea with blood for past 8 months.  Severe lower abdominal pain for 8 months.  For past month, severe pain high up in stomach, persistant nausea & heaving.  So severe in past week to require prescription of pain pills & phenergan. Loss of appetite, fullness after 4 bites.  Repeated calls to GI doc, but they still seem to be scratching their heads! I am in misery with pain, and with inconvenience of loose stools (travel w/job!).
Helpful - 0
Avatar universal
Well I live in Batesville, IN. about 50 miles from Ohio and KY borders. Now for my update. I am still hurting and feeling hungry even after I have eaten.  Tuesday I went to see my doctor and she did a blood test and had an xray done to see where the stent is. Well it is still where they put it, and my lipast is up according to the blood test. My doctor advised me to call IU and see what they said about it. So I did and he said it is fine and to drink and eat more liquids. He still didn't offer to subscribe anything. Tomorrow I will call my doctor back and tell her what he said. I sure hope she does something this being sick and hurting in right and left sides, tummy and back 24/7 has got to GO.  I must say though there is one good thing about all of this, beleive it or not, I am losing weight I have lost over 10 lb. in just the last week. I will find out more tomorrow hopefully !! How about emailing me directly at: ***@****    
Bev.
Helpful - 0
Avatar universal
Hi Bev,
I am about 1 hour south of Nashville, TN.  I go to have my x-ray on April 7th to see if the stent passed.  If not, then I will go back to In for them to do it.  I don't trust any doctor in TN to do anything like that.  I have had a very bad experience here locally and will never go to any of the doc.s again.  They did give me pain meds. when I was discharged last fri. from the hospital.  I remember waking up TWICE during the procedure.  I also remember trying to pull the tube out of my mouth.  Both of my arms were sore from the nurses trying to hold me down.  When I woke up from the ERCP I was fine for about 1/2 hour, then the pain hit hard.  They tried to calm it with demerol but the demerol only took the pain away for about 1/2 hour.  They then switched me to oxycotin and then to morphine through IV when the lab work said pancreatitis.  I am still on the oxycotin, but am weaning myself off slowly.  It is wierd because I still get some pain even on the pain meds.  I sure hope the pain is gone by the time I get off the meds.  I hope you feel better soon.  Please remember to call the ERCP clinic and tell them that you are in so much pain.  Maybe they will prescribe something for a few days.  Let me know how it works out.
Kris
Helpful - 0
Avatar universal
Howdy Kristin where do you live??
I went to the same place, IU of Indiana In Indy. Sounds like we had the same thing done to us. My doctor was Evan Fogel MD
Yes they are a great bunch of people. My problem is I woke up feeling terable and the min. I woke up they was telling me they had already called my ride to come and get me. At that point I didn't know what to do or say so I went home, back to my couch and blanket. The 2 hr trip home felt like 5. I am still having trouble and alot of pain when I eat anything. They gave me no med so I am using pain med I had here. Today I called my doctor and she told me to call in the morning and to get an apointment to come in. So I will find out tomorrow what she thinks. I expect her to put me back in the hospital here at home for a few days. Then some time between the 5th and 8th of April I go get an KUB xray done to find out if the stupid stent is migrating like it is supposed to. If not my paper saids it will need to be done here at home endoscopically. So now I guess it is back to the internet to find out what that means. I am beginning to wish they had left well enough alone. I had only one attack after 2 yrs of having my galbladder out and WHAM everyone got excited. This is not worth all the pain and trouble they are causing. Now I know what they mean when they say "If it isn't broke DON'T fix it." Before it was pancreatic sphincer hypertension, now it could go back to that plus scar tissue blocking it from the cut they did. Geeeee Wizzzzzzz!!! When does it stop?????
Helpful - 0
Avatar universal
Hi, where did you go to have the stent placed in the pancreatic duct?  I just got back a few days ago from IN and I had a stent placed in my pancreatic duct too.  They also did manometry on the pancreatic sphincter and the pressure was high.  They cut the panc sphincter and enlarged my previous biliary sphincterotomy.  I am still taking pain pills.  I have been slowly weaning off the pain meds.  The dr. I went to was Dr. Lehman at the University of Indiana.  He was wonderful and the nurses were great too.  I did get pancreatitis from the procedure and spent 3 days in the hospital in severe pain.  But now I am feeling much stronger and on the road to recovery.  Hope you are feeling better.
Kris in TN
Helpful - 0
Avatar universal
Well Howdy I know just what you all are saying it all sounds soooo much like what I have been going through. I had my galbladder out 2 yr ago and had a ERCP done just last Thursday March 25, 2004. they put a stent in my pancreatic duck and they checked my entire biliary tree and found it to be normal.
I have had this problem before the galbladder was removed and it still continues, even last Thursday it was right there right away following the ERCP. Mine can be felt at times right below or under my lower rib cage on my right side. At times I can even feel it jiggle when I walk. When it is realling hurting bad it hurts all the way through to my back. When I can feel it with my hand I can only feel it when standing, if I set or lay down it can not be felt. I have showed it to doctors and they don't seem to be able to find it. I have had MRI and CAT done too when they was checking my galbladder and they couldn't see it on those either. Some times I think I need to just set up camp at the doctor office so that when it is bulging out and jiggleing when I walk that I could just go inside and show them right then and there. Setting up an apointment just don't work it never makes an apperence when the time comes. Hmmmmm that is a thought I just may try that, spring has sprung so it would be nice weather to set up camp. Anyone want to join me in Indiana?? LOL
Getting really tired and aggervated.
Bev_IN
Helpful - 0
Avatar universal
Well Howdy I know just what you all are saying it all sounds soooo much like what I have been going through. I had my galbladder out 2 yr ago and had a ERCP done just last Thursday March 25, 2004. they put a stent in my pancreatic duck and they checked my entire biliary tree and found it to be normal.
I have had this problem before the galbladder was removed and it still continues, even last Thursday it was right there right away following the ERCP. Mine can be felt at times right below or under my lower rib cage on my right side. At times I can even feel it jiggle when I walk. When it is realling hurting bad it hurts all the way through to my back. When I can feel it with my hand I can only feel it when standing, if I set or lay down it can not be felt. I have showed it to doctors and they don't seem to be able to find it. I have had MRI and CAT done too when they was checking my galbladder and they couldn't see it on those either. Some times I think I need to just set up camp at the doctor office so that when it is bulging out and jiggleing when I walk that I could just go inside and show them right then and there. Setting up an apointment just don't work it never makes an apperence when the time comes. Hmmmmm that is a thought I just may try that, spring has sprung so it would be nice weather to set up camp. Anyone want to join me in Indiana?? LOL
Getting really tired and aggervated.
Bev_IN
Helpful - 0
233190 tn?1278549801
MEDICAL PROFESSIONAL
One consideration may be Sphincter of Oddi dysfunction.  This is suspected in those with biliary-type right upper quadrant pain without any apparent causes.  SOD is most commonly recognized in patients who have undergone cholecystectomy (hence the name postcholecystectomy syndrome). The reasons for this are not well understood, but may be related to unmasking of preexisting SOD due to removal of the gallbladder.

To evaluate for this an ultrasound fatty meal may be considered.  If positive, Sphincter of Oddi manometry can then be done for further evaluation.  If negative, manometry may still be performed if the symptoms continue.  

IBS as well as carbohydrate intolerance may also be causing your symptoms and can be considered if the other tests are negative.

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.

Thanks,
Kevin, M.D.
Helpful - 0
Avatar universal
I'm beginning to think it is true that we have to take charge of seeing to it they find out what is wrong.  We know when something isn't right with us I think.  I have had that biliary sphincterotomy I think done too because the duct closed completely off even though they didn't think it was possible for it to after the first ERCP.  When they went back in it was closed back up and full of sludge.  I'm just praying I can get to the bottom of this before I go broke.  With all my family has been through this past 3 years we can't afford to keep experiementing.  Between my brain surgery, stomach surgeries, and my husbands recent cancer surgery I can't afford to be sick too. Need answers.
Helpful - 0
Avatar universal
Hi, I'm in the same boat you are, only for 6 years now.  Had my gallbladder removed in 1998 and have been having these severe attacks of pain ever since.  Was hospitalized 4 years ago when they discovered the elevated liver enzymes.  I was then told that I have Sphincter of Oddi Dysfunction.  I went to a local University Hospital and had the ERCP w/manometry. I was then told that I had IBS and everything was fine with the bile and pancreatic ducts.  I bought that diagnoses for another year and then started to have attacks again.  I finally went out of the state to another University Hospital.  The GI doc did a biliary sphincterotomy.  I had relief from pain for about 5 months.  Since last July I have had attacks again (some mild and manageable, and some extremely painful).  I am going to another University Hospital in Indiana on Tuesday for another consult.  I have a nagging feeling that my pancreas is the problem now. Please feel free to ask for my e-mail.  I take comfort that I am not alone in this battle and that there are others that have been through the same thing.  IBS seems to be the diagnose of choice from doc.s when they cannot figure out what's going on with you from a textbook view.  I will stress on one thing and that is to gather all your medical records from all you ER visits and ERCP's , etc.  Go over them yourself and educate yourself on the whole biliary system.  The web is a great source of information.  Everytime you go to a GI doc. bring copies of your records with you and a list of questions and concerns.  Make sure you keep copies of everything for yourself too.  One important thing that I have recently discovered is that sometimes we come to an "end of the road" situation with our current doc. and then we need to realize that if they can no longer help us then it is time to move on and go to a new doc.  I hope this information helps you and that you find a good doc. to help you work through your troubles.  Take care.
Kris
Helpful - 0

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