I had my gallbladder removed early April 2010 due to passing stones. At the time of surgery the Dr. at Mayo told my husband after surgery that I had sand in my duct & he thought it would pass by itself, so no ERCP was done. Four days after surgery I was back in the E.R. with horrible pain like I was passing another stone. Ultrasound & MRCP did not show any stones. But, my bile duct was now 10mm. Told me to take ondansetron for the pain and sent me home. I have continued having pain around the stomach area, have lost 18 lbs. I had a MRI done in June & see that the bile duct has enlarged to 13mm. My labs are all normal. No bile backing up. Just pain & a feeling of jitteryness from deep within. My new Internest thinks I may be having spasms of the duct & gave me Donnatal. I have not tried it yet. (I don't like taking yet more drugs).
My cardiologist informed me that I should never take any opioid drug for this can make the duct spasm. I am currently on Tramadol 50mg. I believe this drug is related to those he is referring to? I do have a slight allergy to it (makes me itch) when I take a whole pill. And, I am allergic to Dilaudid, Darvocet, Demerol. Could this Tramadol be causing my problems? I have tried to take Gabapentin, but it almost makes me fall asleep on only 200 mg. I need pain meds for degenerated disks in my spine.
I also am concerned WHY my bile duct is growing, when they don't see any stones. Dr. said the sand would pass. Does this mean I should get a ERCP to get the sand out? I was told not to do it unless my labs were abnormal. Due to possible pancreatitis & ERCP. And, what drug is the best to treat spasms?
You could possibly have sphincter of oddi dysfunction. Dilated bile duct and pain are both symptoms of this dysfunction. This can come on after GB removal. More testing is needed to find out.
SOD is typically pain on the right side and back You can google john hopkins sphincter of oddi for more info .
I have SOD and it was hard getting diagnosed. My GI dismissed me said ibs. I finally went to er one night with a bad attack of pain they gave me dilaudid ( narcotic) and it made it a lot worse. I about fell over from pain right when the narcotic was injected. Narcotics typically invoke the pain of these attacks in most with SOD because they raise pressure in the sphincter and you get horrible horrible spasms. Some things to avoid are Morphine, Dilaudid, Codeine Vicodin, Hydrocodone etc.. I have heard some people can tolerate demerol and toradol since they are not in the same class of drugs. They eventually gave me ativan and it relaxed the spasms.
They sent me home and I went right back because I kept throwing up even more bile and doubled over in pain . They then tested my liver levels and it was 10X normal. MY GI then had to admit something was wrong and he referred me out to DR Cotton at MUSC in SC. He specializes in bilary issues such as SOD and pancreatitis.
Have your liver levels been elevated during an attack of pain ? .
There are 3 types of sphincter of oddi
There is Type 1 dilated bile duct and elevated liver levels and pain
Type 2 elevated liver levels or dilated bile duct and pain
Type 3 Pain only.
So if you do not have elevated liver enzymes during attacks it does not mean you not have it. Type 3 is just pain only this is the most difficult to treat. Type 1 has the best prognosis with a sphincterotomy procedure and type 2 is more a 50/50 chance of relief with sphincterotomy.
Mine typically bothers me when my stomach is empty but others it bothers after they eat. I suggest talking to your dr about SOD and possibly getting a referral to a Dr that specializes in SOD and pancreas issues. They know what to look for and are the best. Most GIs will not venture into diagnosing or helping these type of patients. Most tend to say IBS or you are making it up. This is maybe because this syndrome is not something most GIS deal with and most GIS are not comfortable with doing an ERCP to diagnose it since it is very dangerous.
The best Drs are at MUSC in SC Dr Peter Cotton, Univ of MN Dr Freeman, and Univ of Indiana Dr Sherman. You can even try to make an appointment directly with them.
The test to check for SOD is MRCP to look at your ducts and see if they are dilated or have stones. The other test is ERCP with manometry to measure the pressure in your sphincter. The ERCP is risky and can cause severe pancreatits which could land you in the hospital months. That is why it is critical you only get this done at a center that specializes in this procedure such as those I mentioned. If your pressure is high then they can make a cut in your sphincter to relieve the pressure. This helps some. In others it has to keep being repeated. There is no real cure that works 100%. Some people find relief from nitroglycerin, or levisin to help with the spasms . Some even find a little relief with amitryptiline. These drugs can help a small percentage of people so you could try it first. Sphincter of oddi also sometimes goes along with chronic pancreatitis so they can check out this possibility as well with the ercp and and EUS procedure. Eus is not as risky. Its more like a endoscopy. Chronic pancreatitis or SOD do not always show elevated enzyme levels so more procedures are usually done to get a clearer picture of the problem.
Funny you should mention Ativan relaxes the spasms. I take xanex, and it does make it better. Which just made the doctors at Mayo further believe anxiety is the reason! They were like, ohhhhh, look you feel better. NSAID'S also make it feel better. I have to take twice daily to keep on top of the pain. Right after surgery, I could not tollerate Vicodin (which I normally can). Made me hella sick. That is how I got Tramadol prescribed.
My liver enzymes are back to normal. Bile enzymes are normal. Pancreatic stuff is back to normal as well. But, I have not checked that in some time. I do not feel the need to vomit since having the gall bladder removed. Slight nausia, most when the stomache is empty in the am. But, I also take meds on an empty stomache in the am?
So, I would be a #2. I have a MRCP & MRI that show a growing common bile duct, inside & out. Although they did not measure the common bile duct B4 surgery to have something to compare it to. I am requesting Mayo to look at my ultrasound to see if the common bile duct was visible prior to surgery? Pain & a jittery feeling coming from deep inside around the stomache area? And some other antibiody test that is positive for ulcerative colitis, or Chron's? A bit of constipation/diahreah (orange bowel) that is usually with a fatty meal. I am scheduled for a colonoscopy mid August. My internest suggested a EUS. I don't know what that is? I will look it up. I do not want a ERCP, and was told not to do it unless I get backed up with bile enzyme wise.
I am not so sure Mayo is going to help you. Like I said its really hard to get drs to venture into a SOD diagnosis because the ERCP is so risky. I did lots of research when I started having these symptoms and found the best drs which I mentioned above. When I visited dr cotton in sc he did the MRCP and scheduled me for the ERCP. I told him I would rather wait for the ERCP to see if I would stay the same or progress. He agreed that I could do that and gave me an rx for levisin which helps some people with the spasms. He believed I was type 2 since I have the elevated liver levels with attacks. He can also look at MRCP to determine if you were born with any defects such as pancreas divisium or other things. This sometimes can be the source of problems.
If your liver levels have been elevated during attacks and your bile duct is bigger then you may have type 1 which has the best outcome with the ERCP and sphincterotomy. I would absolutely not get it done anywhere else besides the drs I mentioned so please keep that in mind if you do it. The specialists will possibly perform an EUS as well. This is like an endoscopy and not very risky. It can look at your pancreas and tell if you have chronic pancreatitis. CP often goes along with SOD. Its important to get that diagnosed early. A lot of drs are not trained to read an EUS properly either. Many drs do it and say no signs of CP but when these same people go to the specialists they pick it up. Remember theses specialists only do ERCP and EUS everyday and specialize in SOD and CP so they know what to look for. You will also have a lesser risk of pancreatitis after ERCP if you go to them.
I am actually able to function well. My attacks are not that often. I make sure I do not take meds on an empty stomach ( tylenol etc) since that provokes attacks for me, I try to eat first thing in the morning since my attacks come on an empty stomach also. I am now only having a few bad attacks a month and have the mild cramping pain only around my period. I am thinking the hormones released that time of month must effect the sphincter in some way.
You also mentioned you have UC so you will need to follow up on that as well. If attack like pain persists often and you keep getting elevated liver enzymes with attacks.then I would look into getting the ercp. You do not want to have all the bile and pancreatic juices backing up causing damage to your organs. If they settle down then you could just get an eus for now. You want to make sure that you are not showing signs of CP on the EUS since you are now passing loose stools with fatty meals. If you do have CP they will ask you to eat low fat and prescribe enzymes to take with each meal which will help digest the fats.
Thanks for all the info. I faxed all my records to the Dr. in Indy. I am waiting to hear back from him. I agree. I want a doctor that does the E.R.C.P. everyday if I have to have one done. And, I am taking the wait & see approach as well. None of my labs have been elevated since the gallbladder has been removed. It took a few weeks for them to go back down, but that's it. My attacks are so short. I would have to have a standing order with the Dr. to have me swing by during one to draw blood I guess? I can
ask them. I see my internest tomorrow. I will find out more about if I really do have Crohn's or U.C.? I really only notice the cramping & runs now with a fatty meal. And my stomach almost always hurts in the a.m. But, I have not been watching taking food with pills. That is my next priority. And, I already got over the counter bile & enzymes.
I know they are not near as potent as prescription ones though.
Amazing that they can see your pancreas with a EUS? I will look into that. I know my internest said that the G.I. guy that does my colonoscopy here in AK can do that too. Should I let just a regular G.I. doc do that to me? You said not very risky? Are you knocked out for that. General Anesthesia? All this entering my body cavity is rather un-nerving I must say. I have had 12 surgeries already and only 47 yrs old. *****.
My bad attacks are short as well so I was wondering how in the world am I going to get my enzymes tested. I had a really bad day after being on erythromycin for a root canal so thats why I ended up in er the one time I mentioned. I told him its serious and I will come back if it keeps up. I felt it was serious. I went home and started throwing up thick green bile and was really sick. I went in and the triage nurse took one look at me and walked me back . They then tested my liver and it was 10x normal. MY GI told me he is glad I went back because he would have kept thinking it was IBS since he really did not think I had SOD. They actually hospitalized me a few days because I was so bad. So never take erythromycin .. I would not want you to ever have to go through this.
If you ever get really bad go to er and get liver levels checked. Tell them you want them checked since its not normally what they look for. Your dr could also do a standing order for them to be taken during an attack.
EUS is not that risky. Its going to be similar to an endoscopy. EUS can detect small changes before they are visible on CT so this is a great test. I would get a good dr to make sure the results are read correctly and the best equipment is used.
They will most likely use versed or propofol to sedate you. Versed is like a very very strong valium. Some people are completely out and some are in and out during the procedure. You will be out of it for quite a few hours afterwards. If you use propofol you will get an injection and just go to sleep for the procedure. You will wake up afterwards when they stop the drip going in your vein. You will not have the hangover effect. My personal favorite is the propofol since you are out and not many side effects afterwards. Always make sure the propofol is only done in a hospital since it is a powerful drug and an anesthesiologist is there in the room administering it not a nurse , regular dr etc... The propofol is often the drug that is used in general surgery to induce anesthesia. I also had it when I went into the room for my GB surgery.
Let me know if you are able to get an appointment with the DR in Indiana and what your dr says. I am hoping for the best and that you can get this controlled so it is tolerable.
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