Gall Bladder removed but pain istill persists in URQ

[Tom324]

I had my gallbladder removed in August 2008. The gallbladder was inflamed and
had no signs of gall stones. Since, the operation (scope method) I have had 20 or
so RUQ attacks. The attacks all happen a few hours after I eat. They last as short as 10
minutes and as long as 1 or 2. When the attacks come on, the pain comes on quickly, a manner
of a few minutes and when the pain goes away, it is about the same time. There are no other
external symptoms, no nausea, chills, sweats etc. My blood work after the gallbladder was removed
showed slightly high AST and LST. Since, the gallbladder was removed, I have had a Ultra sound, a
endoscopy, and a MRCP. All came back negative. I recently had a CT scan.

I have repeatedly asked the Drs about the Sphincter of Oddi possibly the problem. They come back
with the ERCP procedure as the only method to determine if this is the problem. Some of the experts
also have told me that there is no sign of dilation of the bile duct or the Liver tests are not abnormal.

Any suggestions...

I hear that there are risks involved with the ERCP, so the pain may be better that the cure.

[CciCci]

Hi,
Read your post although its been a while now, also tried the links you gave but they are expired. I am having excruciating pains resulting from an open surgery for gallbladder removal. Its been on for 4months now and pain killers make it worse. I have done all the necessary blood test and scans but everything came back okay. The doctors have given up on me. Life has become so unbearable, my pains are chronic and constantly there. I am in sooo much pain. I have also tried different alternative approach but to no improvement. Any helpful tip will be appreciated.

[joemama677]

Oh yes i forgot to mention, i couldnt get a definate yes or no answer on if my gallbladder needed to come out or not so if i could ask your opinion i will put the results of analysis exactly as it is written so anyone can see and compare, hope it helps.
------------------------------------------------------------------------------------------------------------------------------

SPECIMEN RECIEVED:
GALLBLADDER AND CONTENTS.

GROSS DESCRIPTION:
The specimen is labeled with the patient's name and "gallbladder and contents" and consists of a gallbladder,
7.4cm. in length and 2.8 cm. in diameter. The cystic duct does not appear dialated. The serosal surface is gray-blue. the gallbladder wall is 2 mm. in thickness. The lumen contains no stones. The mucosa is velvety dark green. Representative sections in 2 cassettes.
MICROSCOPIC DESCRIPTION:
Sections show focal flattening and fibrosis of the mucosal folds. The muscular wall is mildly thickened, traveresed by chronic inflammatory cells.
DIAGNOSIS:
Gallbladder, excision: Chronic cholecystitis.
------------------------------------------------------------------------------------------------------------------------------
Thanks very much for your quick reply and all the info, which will take me awhile to disseminate but i appreciate the help all the info will help. You no doubt spent alot of time researching this i just got back online after being off since i got sick. I didnt know so many suffer from this it is sad but it helps me at the same time knowing that im not the only one with similar trouble. I will do the best i can to post any good news and thanks again it has been hard to be positive with all the bad news lately.

[Banned1]

Hi Joe:

I'm so sorry to hear about all you went through.  I'm really glad you got your gallbladder removed. Most of the horror stories you hear are from people who have healthy gallbladders taken out.  It sure sounds like you are one of those who have post-cholecystectomy syndrome, sphincter of oddi dysfunction, pancreatitis or one of the other issues that cause continued pain after your surgery.  If you do discuss the ERCP with your doctor, please make sure you get it with manometry.  This is a test that measures your sphincter of oddi pressure.  The sooner you have a diagnosis, the better it will be for you.  For starters, you don't have any problems getting appropriate medication for pain and nausea if you have a concrete diagnosis of SOD.  There are three different types of SOD and there are a number of tests to diagnose it.  Please take a quick read at http://www.joplink.net/prev/200111/04.html and http://www.joplink.net/prev/200111/06.html.  

There are a number of groups dedicated solely to this problem.  Go to any search engine and search for Yahoo! groups.  Once you can search the yahoo! groups, type in sphincter.  You will see about six groups devoted to pancreatitis, sphincter of oddi and undiagnosed symptoms.  Three of them are great.  One of them is amazing.  You will find more information there than you would in a month of searching elsewhere.  You have to be approved for membership but, of course, there is no charge.  Both Michele and Maddi's group are well worth joining but it doesn't hurt to join them all and check in to see if anyone has heard anything new.  It will show you how many of us are out there.

I tell anyone who listens that I have had great success with Motilium for diarrhea and vomiting.  There are other meds but this one helped me.

As I mentioned previously in this post, it's important to be your own health advocate.  No one is more committed to your recovery than you are so the following things have helped me:

Research!  Read old posts in this forum.  There is a fantastic research resource that I've found very helpful called "The First Principles of Gastroenterology": http://gastroresource.com/GITextbook/en/Default.htm.  

Log!  Keep a journal.  It helps identify patterns in your symptoms, foods, medications and pain level.  You're welcome to read mine but I write a lot (can you tell?).  :)  http://www.medhelp.org/user_journals/show/12546?personal_page_id=8912

Reach Out!  You are not alone!  Try to stay positive.  

When you do find answers,please post to let everyone know what you found and how you got rid of your symptoms.  It gives people on this site hope to hear success stories.

Good luck and Godspeed!

Sam  (female - not short for anything)  :)

[joemama677]

I am new here and looking for answers. On 24 apr 2007 i woke up that morning after having flu like symptoms all week and passed orange urine and was in pain. I went to a local clinic and they performed an ultrasound on my abdomen and i was told that my gallbladder was enlarged and my liver enzymes were elevated, to the point that i needed emergency surgery. So i went straight to grand forks hospital for the operation, when i was admitted before the surgery they asked me a few questions and told me that there wouldnt be any problems with removing it and after a few months everything will be back to normal. So I had my gallbladder removed laproscopically and right after the surgery i caught pneumonia because i already had bronchititis when i went in for surgery then i started getting high fevers of up around 105F (I would melt a 2lb bag of ice in 5 min on my head), projectile vomiting, body pains everywhere, low potassium in blood sample, chills, chest congestion, headaches, basically flu x 10. I stayed in the hospital for 2 wks they took blood samples three times a day and sent blood samples to mayo clinic, went for 3-4 mri scans that showed enlargement of most of my internal organs and fluid buildup around my heart,I was visited by pulmonary, ENT, and infectious disease doctors. I was put on several antibiotics and numerous other drugs like advair without much releif. After the 2 wks passed I didnt have any answers but was good enough to get around on my own a little and i was sent home. I was also given prescriptions for oxycodone for pain but those have been discontinued because they thought i was getting addicted and i assure u i wasnt i am still in pain, feels like from my stomach all the way down to my rectum, and sometimes have to take a break when it gets too bad. It affects my work i cannot leave the area of a toilet farther than 5 min away. Several months went by before i was well enough to do anything but lay in bed. My blood tests from mayo showed possible signs of an infection called CMV or cytomegalovirus But were inconclusive since they would have had to have a blood sample from before i was infected to verify that infection, and to this day i have GI problems the same as described above plus when I have a loose bowel movement my rectum often is sore and burns. I went to another dr for 2nd opinion and he says it may be IBS.After reading this forum i will bring the ERCP to his attention, thanks alot for everyones input! I would be at a loss w/out it.

[Banned1]

Wow.  I'm really glad you got through all of that and are doing okay.  I'm very sorry that your cholecystectomy was delayed for so long.  Good luck with your third ERCP at the end of the month.  I sincerely hope you do not have any Sphincter of Oddi Dysfunction and are well and truly healed.  You are in my thoughts and prayers.

All the best,

Sam

[lissavalenz]

Hi Tom:

Here is my experience so far with ERCP's.  

I was admitted to the hospital to have my gallbladder removed on November 25th after 16 months of test after test and being hospitalized multiple times for severe upper right quadrant pain along with slight elevations of my amylase and lipase enzymes.  None of the tests that were done, i.e. ultrasound, ct w/ contrast, mri w/ contrast, mrcp, hida scan, showed anything wrong.  My gallbladder seemed to be the culprit though so finally after seeing several gastroenterologists I arrived for surgery.

The cholecystectomy went well but about 5 hours post op I began having URQ pain that soon turned excruciating.  I was sent for a STAT CT scan and then another HIDA scan that showed I had a bile leak from the gallbladder stump.  I was taken to ICU and returned to surgery the following day for an ERCP to put in a biliary stent.  The ERCP couldn't be completed due to severe swelling of my biliary system so I went back to the ICU on meds for pain and swelling for 2 more days.  48 hours later I returned to surgery and the ERCP was successful this time and I now have a stent from my liver to my duodenom to allow the bile leak to heal.  I am scheduled for my 3rd ERCP at the end of this month to have the stent removed and check to make sure the bile leak has healed.  

My gastroenterologist is also concerned that SOD may have played a part in my pre surgical symptoms, but my gallgladder was very sick so it did have to come out.  However, there were no stones or sludge in my gallgladder, just significant cell damage from chronic inflammation of the gallgladder.  The cause of that may very well be high pressures from the SOD.  The stent is keeping the sphincter open right now so I won't have a diagnosis on that until or if I have another attack of URQ pain.  I hope not.

So, the ERCP is not so terrible.  If I am any example, the risks are definitely worth it if it means you will be rid of the pain.  You don't want to end up with permanent damage to your hepato-biliary system that winds up making you chronically ill.  Just make sure that you have a very experienced doctor performing the procedure to minimize the chances for "pilot error"!  Good luck to you

[Banned1]

Hi Tom:

My pain is constant so I don't have much information to provide.  I've sent you an email that might help.  I'm told that sometimes with either of the SOD I, II and III diagnoses, microscopic stones and/or changes in the pancreas can also be an issue.  I've recently spoken with others who have attacks several weeks apart.  These attacks are so brutal, I'm not surprised that you would feel cruddy for a good while afterward.

I wish you all the best,

Sam

[Tom324]

In most of the posts that were generating by my initial description and other post
found in this Forum, there does not seem to be much information as to the interval
between attacks.

In particular case, the attacks have been happening between a few days apart to as much as 13 days apart. I have not had repeated attacks in the same day.

From the non-invassive tests I have had so far, I believe I may have SOD Type II.

Like Sam, I have a log book documenting what I have eaten a couple meals before the attacks.

Another thing I maybe experiencing, is feeling pretty cruddy the day or to after the attack. I will be paying more attention to the nausea feeling I'll be experiencing when the attacks come on.

Thanks,

Tom

[Banned1]

Hi Tara:

If you get something out of that, I'm glad.

All the best and see you on sodp,

Sam

[TaraDoyle]

Sam, thank you so much for putting this much time and effort into your response. I looked at your photo on the other site yesterday and posted some of my own. It is nice to put a face to all your helpful posts. I will definately go to my next appt. with a barrage of questions thanks to you.

I'll see you on the other site.

Thank you and MerryChristmas!
Tara

[Banned1]

Hi Tara:

I'm in Ontario, Canada, too.   Too funny.  I would imagine the specialist will want to meet you and get a take on who you are first.  S/he might order blood tests and do a brief physical exam.  S/he will probably tell you what's next.  Take notes if you can so you remember everything.  I've posted some questions for your consideration below.  All the best,

Sam

http://www.gichannel.com/patient-information-gi/index.shtml suggests the following questions:

Questions to ask about your GI condition

**What is the name of my condition? Are there any other names for it? (For example, gastroesophageal reflux disease [GERD] is also known as chronic heartburn.)
**How severe is my condition?
**Is my condition long-lasting (i.e., chronic)? Is it hereditary or related to my environment or lifestyle?
**What complications may I experience?
**Does my condition increase my risk for developing any other medical problems?

Questions to ask about diagnostic tests

**Will a board-certified gastroenterologist (specialist in diseases of the GI tract) be performing my diagnostic test?
**If not board certified, has my doctor completed a fellowship program or received special training in gastroenterology?
**About how many of these procedures has my doctor performed? About how many does he/she perform each month?
**How should I prepare for this diagnostic test?
**How long will the test take?
**Will I be able to drive myself home immediately following the test?
**Are there any side effects or complications associated with this diagnostic test?
**If my test detects an abnormality, what will be the course of action? May abnormal tissue be removed during the procedure?
**How long will it take to get the results of the test? Should I call for the results, or will someone contact me? Telephone # to call: When to call: Date: Time:

**************************************************************************************

B.C. [http://www.health.gov.bc.ca/waitlist/options.html] suggests the following questions:
**How necessary and how urgent is the surgery?
**What are the risks and benefits of having surgery?
**Are other treatments available for my condition other than surgery?
**How long have other patients waited for this type of surgery?
**Is there evidence my condition will change while I wait?
**What should I do if my condition changes while I am waiting for surgery?
**How can I arrange to be contacted on short notice if a cancellation occurs?
**What should I do if I change my mind about having the surgery, if I need to re-schedule, or if my condition improves and I no longer need surgery?
**Can you describe to me what this procedure entails?
**For the procedure I need, how many do you perform each year?
**What kind of follow-up care or services will I require after the procedure?

**************************************************************************************

[TaraDoyle]

Thanks Sam for your advice. I am in Canada however and with the way our health care works we don't get much of a choice in the doctors we get. Would you be able to give me some questions that I can as my surgeon before he sends me to the specialist? I am so grateful for your concern and any advice you have. I am a member of the Pancreatitis/SOD group you recommended, my name there is garytarazoezachzanderzane... long I know. Anyway, thanks again Sam.

God bless you,
Tara

[monkeydoo]

I agree with the earlier poster for you to have the ERCP.  I developed a bile leak after my GB was removed lapro this year.  I went back to ER week after surgery with severe pain and had ultrasound, xray and CT and finally the HIDA scan showed the leak.  They immediately did ERCP to place stent in bile duct and went in back in 6 weeks later to take it out.  I had no complications.  Just like any procedure there are complications. I just had my entire colon removed this week.  Talk about complications.  But I know once I get home and begin my recovery it will be better than living with colonic inertia the rest of my life.  Good luck

[Banned1]

ERCPs are scary, no question, and you should never have one done by anyone unless they do them regularly, like every day!  You may come to the decision that the ERCP is worth the risks and so, for whatever it's worth, there are two word-of-mouth listings for physicians in Florida:

Dr. Roger M. Orth [ERCP Specialist]
1-800-464-4536
www.endo-world.com
5147 North 9th Avenue
Suite 311
Pensacola, FL
32504

Dr. Michael Wallace
http://mayoresearch.mayo.edu/mayo/research/staff/wallace_mb.cfm
[phone]
Mayo Clinic
4500 San Pablo Road
Jacksonville, FL
32224

Good luck and Godspeed, Tom!  You'll be in my thoughts and prayers.

All the best,

Sam

[Tom324]

Thanks for the quick response...

I was not tested for pancreatitus prior to the gallbladder being removed. As mentioned
earlier, my gallbladder was inflamed. I had slightly high AST and LST liver enzymes but
nothing else, other than excruciating pain which brought on the nausea. Since the gallbladder was removed I have had recurring pains in the RUQ. The longest duration between pains has been 10 days, I have been taking Hydrocodine when I feel the attack
comming on. I am in FL, and my gastro Dr. has sent me to Shands located in Gainsveille. There I had additional blood work and a CT scan. I have done additional searches on the internet and came across SOD type III. I am not a Doctor of course, but
I don't mind taking some time and doing some of my own investigation. Talking with the various Doctors, a lot of what they are talking about certainly agrees with the discription of SOD Type III.

As far as opting not to have an ERCP, until I have better evidence the SOD is the problem it does not seem worth the risk. I have not gotten into much deatails if I decide to do nothing. Not sure of what the effects will be.. Kinda makes you wonder whether the SOD caused the Gall Bladder to go bad..

In the reasearch I have done so far, SOD seems to be found in the US for the most part.
So I guess it is a good thing that we are in the US.

I do have a log book, one of the Nurses I had in the hospital reminded me that abdominal surgery is much more involved that the hernia surgery I had. Just to keep things straight, I created a log the day after I got out of the Hospital.

All the Gastro Drs say, that if you want to have ERCP the procedure performed, specifically measuring the pressure of the SOD, have it done by a Dr. that does a lot of them.

Good luck, and thanks for the websites...

Tom

[Banned1]

Hi Tom:

I'm so sorry to hear that you are still suffering.  I responded to TaraDoyle's initial post and I'm going to repeat much of that here.  It is my hope to help anyone who is still suffering after their gallbladder has been removed.

I'm a 42-year-old woman and I had my gallbladder removed in May.  I later had another surgery called a sphincterotomy.  The sphincterotomy is essentially an ERCP where they cut to allow better flow/drainage of bile and stop the pain.  I would imagine that will likely be your next step, Tom.  Even knowing the risks, I was of the oppinion that I would rather have it done than building up scar tissue on a daily basis with attacks.  And with a lot of people, it works, if that is truly their problem.

I've learned that there are many things that can cause post-surgical pain including the surgery itself, Post-Cholecystectomy Syndrome, Sphincter of Oddi Dysfunction and Pancreatitis, among other things.

I belong to a Yahoo! group which deals with Sphincter of Oddi Dysfunction, Pancreatitis and Undiagnosed Symptoms, among other things.  Michele V. is the most amazing woman who owns and moderates the forum and she is also a Registered Nurse.  Some of the other members are also medical professionals.  This forum is full of people who live with our kind of pain and suffering every day.  They have personal applicable experience that REALLY helps.  To learn more about this group, please visit: http://groups.yahoo.com/group/Sphincterofoddi_pancreatitis.  

I hate to take drugs but it doesn't take long to change your tune when you deal with pain like this.  I'm on on a sustained action pain medication called Oxycodone/Oxycontin HCL which has made a world of difference.  I'm still REALLY sick but these things have taken me from being bedridden to being mostly mobile, happier and hopeful.  Tom, you mentioned that your pain was post-prandial (after you ate) and in short, sharp bursts.  The group would likely have personal experience for pain management in a similar situation to yours...I honestly don't have a clue.

Here are a couple of common sense things that I've found helpful.  

Research!  Read old posts in this forum.  There is a fantastic research resource that I've found very helpful called "The First Principles of Gastroenterology": http://gastroresource.com/GITextbook/en/Default.htm.  

Log!  Keep a journal.  It helps identify patterns in your symptoms, foods, medications and pain level.  You're welcome to read mine but I write a lot (can you tell?).  :)  http://www.medhelp.org/user_journals/show/12546?personal_page_id=8912

Reach Out!  You are not alone!  Try to stay positive.  

When you do find answers,please post to let everyone know what you found and how you got rid of your symptoms.  It gives people on this site hope to hear success stories.

All the best, Tom.  I sincerely hope yours is an easy fix.  

Sam

[TaraDoyle]

Hi Tom, I unfortunately am going through the exact same process as you are right now. I had my gallbladder only removed on Dec. 9th and have had pain (attacks) that come anywhere from 15mins. to and hour after I eat. The severity differs, the length of the attack differs and I am still a little nauseaus although not as much as before the surgery.

My surgeon is sending me to a gastroentanologist (something like that) and says I need an ERCP, but I was also told it was a complicated and risky procedure. I hope you find the answers you need or maybe someone who has had some sort of success with this will read these posts and help us out a bit.

I have one question, I had Pancreatitis and was hospitalized for 5 days end of November and it was then that they found the gallstones. I was wondering if you were tested for Pancreatitis at all and if so, I have heard that that can cause similar symptoms to what we are both experiencing.

Take care, Tara