I have been aparently living with bile duct spasms since i had my gallbladder removed in 2003 and didnt know it because i was told it was my nerves, its all in your head it will go away, everyone has them. I didnt even know what they were except just as painful as the gallbladder attack. I went to doctor after doctor and test after test, all telling me that this was just my nerves, its all in my head. It ruined my 15 year relationship with my fiance, who started to believe these doctors that it was all in my head. Well, all that changed last tuesday. I had started having these pains in my stomach i thought was an ulcer. i;ve had these pains before but they come and go, wake me up in the middle of night, double me over, i take malox, or tums or alka selzter and im okay for a while. this was different. this pain in my stomach went on for a month. i was taking prilosec which seemed to keep it in check until last tuesday. i was fine all day and then i was meeting my friend for dinner and i started getting the usual spasm pain only this time, it was getting better, it was getting worse. i didnt say anything and went out to dinner anyway, i tried to eat a little but it was really hard. when i got home, i took some tums and tried to sleep. the pain was bad but i keep drifting in and out of sleep. finally, i woke up and i felt like i was drunk. the room was spinning and when i stood i almost fell. i couldnt keep my balance but i managed to get to the bathroom. i went and i felt like i had to vomit at the same time. i knew it was time to go to the er. i got there they cat scanned me, took blood and gave me zofran. the er doc came back and said that my bile duct was dialted and my liver enzymes were pretty high, AST 945 ALT 696. they admitted me and did an ultra sound of my stomach liver and pancreas which showed that the bile duct was dialted but not blocked. mri also showed the same and they told me they thought i may be passing a stone. they told me that its not uncommon for the bile duct to be slightly dialated after gallbladder removal. i was in for 4 days. 2 days just fluids and then full liquid and then low fat. levels went way down by day three AST was normal, 58 and AST was down to 163. my question is, will this happen again? what can i do to control this? i had a month notice with the mild stomach pain. what causes this? has anyone else experienced this? im 45 years old, three back surgeries, otherwise, healthy. i want to treat this as naturally as possible. i see surgery as just possibility for more problems. thank you
Pia, any form of opiate-based meds raise the pressures in the common bile duct and for those with problems of the duct it will result in extreme pain.
Do you know if you had a reaction to the coating/fillers in/on the bentyl, or was it due to the medication itself? If you're not sure you might have a discussion with your pharmacist who might help you to sort it out. Drugs like bentyl are some of the typical meds given for biliary spasms. There are others in that category, so if it's the coating or filler perhpaps you could try another brand. The other meds for this condition include specfic calcium channel blockers and nitroglycerin. But they may or may not work for everyone.
Are you following a low fat diet? It may be of some help.
When you had the ERCP done, did they do a sphincterotomy? And have you had your liver and pancreatic enzyme levels measured?
Susyq, I hate to say it but it is possible that it could happen again. I believe you need to find a GI person who specializes in the biliary system and take all the results you've got from the time in the hospital and go over it with him/her. What you're describing is called SOD, sphincter of Oddi dysfunction, and it's unfortunately not all that uncommon. It can be due to spasms of the bile duct, but it can also be due to spasms of the sphincter of Oddi, the muscular opening to the duodenum from the bile duct/pancreas.
You may need to find out if you've got any sludge hidden anywhere in the bile duct. It can be leftover from surgery, or it can be 'newly' made. That sludge can irritate the bile duct and/or the SO and as you know it can be miserable. And this problem can end up leading to pancreatic issues so it's not something to take lightly.
You really need to have a doc you can work with on this in case it continues - someone you can trust and really talk to. In the meantime, I hope you'll continue to follow a low fat diet which may help a bit.
This comes from someone who's been through a lot with regards to gall bladder and sphincter of oddi dysfunction. I'm also a pharmacist for what it's worth, but I can say first hand that opioids can cause terrible biliary spasms and even worse in those without a gall bladder. I had a sphincterotomy and and the spasms are sooo much better, but I still get some general spasms from Ultram. Donnatal is good for this or Levsin SL is even better as it gets into your system much quicker and when the bile isn't flowing, time is of the essence, of course generics are better (cheaper), I'm just naming them by brand as these names are better recognized and Donnatal has four meds in it. I found that the Levsin worked the best, but we're all different. Best of luck to anyone going through this. Sphincter of oddi is the last thing they look for unfortunately.
I have had alot of the same problems.I have had 3 doctors write me,one even being from Mexico,they all said that cholecystitis is misdiagnosed sometimes,when in reality it is cholangtis.I have had 6 or 7 ERCP's.They all said that a liver biopsy,to see inflamation in the liver.If you want email me at ***@****,and hopefully I can figure out how to write you back.I am not very good at computer skills.
I just wanted to say thank you to everyone for your advice. I really do appreciate it. I have found a wonderful doctor. She looked at my blood work, xrays, everything and she said that bile duct wasnt dilated, it was just shaped weird. she said she thought my problem was SOD. She told me that as long as i could control it with diet and medication when symptoms come along, that was the best was to go for now. She said the ERCP had a very high risk of pancreatitis. She said that would be worse than what im going through now and as long as i can eat, i should just keep doing what im doing. This is my problem. It seems to be intermittent. It seems that i can eat pretty much whatever i want and then, all of a sudden without warning, I feel nauseated again and i have that strange bloated, uncomfortable pain again. I dont understand it. i have gone months with no symptoms at all but it seems since my hospital stay, i dont go any longer than a couple weeks without something. when it gets bad, i only eat soft food and ensure shakes. Just like everyone else here, Im so sick of this. its very frustrating and it makes it hard to plan your life. I love to travel but im so afraid of getting an attack when i'm away. Again, thank you to everyone for your help. my doctor prescribed me reglan, is that right??? i have to look at the bottle and ativan. the ativan seems to help the attacks go away but my stomach still feels strange for days afterward. i will let you know whats next. she was going to do an internal ultrasound of the liver.
have a great day,
About 3 years ago, I experienced severe pain in the center of my chest and directly across to the center of my shoulder blades. It felt like there was a band around my rib cage sweezing me. I thought the bones in my back would break. Eating made it worse. My stomache hurt, I was naseated and could not stand up streight or lie down. I had to prop myself up over the back of my couch. I could hardly breath. Just took tiny short breaths. After going to the ER and many visits to the GI doc, endoscopys, ultrasounds... They told me my stomach seemed ok, just had some erosion around the opening of my esophagous. I was told the only thing they could assume was that I was suffering from esophageal spasms and G.I.R.D. I had no heart burn symptoms. So I dealt with that for the last 3 years with no real answers. What felt like spasms in my back and chest would get worse if I ate but seemed to go away by itself. So I haven't had that horrible heart attack feeling in years until this week. Unfortunately now, I am 37 weeks pregnant. I figured it was a pregnant thing but it feels exactly the same as what I went through before. If it is, I fear that there is nothing that can be done. Symax is what they gave me for the spasms before which is not ok to take while pregnant. Nexium doesn't seem to have any baring on whether this does or does not happen to me. I have no idea what agrivates it or what helps ease it. I have researched everything and gall bladder spasms seems to be the only thing that closely matches how I am feeling. When it first happened years ago, my boyfriend's mother who is a nurse told me it sounded like a clogged bile duct. But my GI doctor's said they didn't think it could be that since I was so young and I don't even know if they checked for that. I only saw pics of the inside of my stomach. Now I am 31. Maybe I won't be so over looked this time? I don't know. Anyone think it could be something other than a gallbladder issue? Because I really hope it is just normal muscles spasms that come with the territory of being pregnant. However, it is not in my lower back. It's upper back between the shoulder blades, sometimes my shoulders and definitely in the center of my chest, knocks the wind out of me and the room spins. I'm so worn out. Dealt with it all night and this morning. Help?
Illelay, you may want to repost your question as a new post - your own. Posting it under someone else's could lead to people not seeing what you're saying and your replies could be limited.
I also suffer from bile duct spasms. Many many years of "HELL", but I have found what finally keeps them away....and if I do get one on occasion...it is not too bad and does not last long.
#1 GONNA B TOUGH, BUT IF UR PAIN IS UNBEARABLE LIKE MINE...SENDING U TO ER. STOP EATING BEEF..100% NO MORE HAMBURGERS, STEAKS ETC... STICK TO PORK, FISH, SEAFOOD, AND CHICKEN FOR MEATS. FOR ME THIS WAS THE #1 THING THAT MADE MY ATTCKS AT THEIR WORSE AND LAST A LONG TIME...SENDING ME BY AMBULANCE TO ER IN SEVERE PAIN.... BEEN 6 YEARS SINCE I TOUCHED BEEF! WAS NOT HARD FOR ME CAUSE THE PAIN IS THAT BAD....
ALSO WHILE HAVING AN ATTACK AS HARD AS THIS IS....KEEP MOVING AND WALKING AROUND...MAKE SURE U ARE NOT CONSTIPATED, WHILE DOING SO, SLOWLY DRINK ROOM TEMP. WATER. **NOTHING COLD** AS COLD CAN CAUSE SPASMS TO BECOME MORE FREQUENT AND SEVERE.(STAY AWAY FROM ICE CREAM...UNTIL U STOP EATING BEEF....AND GET ATTACKS UNDER CONTROL.)
ALSO...IF U ARE ON ANY PAIN MEDS....MAKE SURE U CRUSH THEM COMPLETLEY AND PUT THEM IN SOME JUICE OR YOUGART....(UNLESS IT IS TIME RELEASED) TALK TO UR DOCTOR....TAKING A PILL WHOLE OF ANY NARCOTIC NEEDS TO BYPASS OUR STOMACHS OR BILE BUILDS UP AND THE SPASMING STARTS. **DO NOT TAKE MORPHINE** I TELL MY DR I AM ALLERGIC TO MORPHINE CAUSE....BACK IN THE DAY THEY USED MORPHINE TO TEST FOR SPHINCTER OF THE ODDI....IT WILL ALWAYS MAKE IT WORSE AND INCREASE VOMITING.
MOST THE TIME....I DID NOT BELIEVE IT AT FIRST...BUT THE ATTACKS ARE ALSO CAUSED BY PEOPLE WITH CONSTIPATION. I THOUGHT THIS WAS A LIE CONSIDERING I ALSO HAVE IBS...AND SEVERE DIAHREHA ALMOST EVERYDAY. HOW THIS WORKS IS ON THE DAYS WE DONT HAVE A BOWEL MOVEMENT AND DIAHREHA WE ARE BECOMMING CONSTIPATED. WHEN WE DO HAVE CRAMPING (IBS) SYMPTOMS AND HAVE DIAHREHA, THE CRAMPING IS ACTUALLY CAUSED MY THE CONSTIPATION AND BEING BACKED UP, AND THE DIAHREHA TRAVELS AROUND THE HARD STOOLS. FINALLY WE WILL PASS HARD STOOL. THAT HAS MOST LIKELY BEEN IN US FOR AWHILE CAUSING ALOT OF TROUBLES...SO BEING ON A PERSCRIBED LAXITIVE...MAY HELP! 9 TIMES OUT OF 10 WHEN I MEET SOMEONE WITH SPHINCTER OF ODDI....THEY ALSO HAVE IBS...CRAMPING AFTER EATING...FOLLOWED BY DIAHREHA....FOLLOWED BY HARD STOOL SEVERAL DAYS LATER.
TALK ABOUT A PAIN....BUT THESE STRATEGIES DO WORK....DR.'S KNOW VERY LITTLE ABOUT THIS ISSUE.....AND MOST OF US HAVE TO FIND OUT THE HARDWAY...WHAT WORKS. THEY CLAIMED FOR YEARS THAT I NEED TO STAY AWAY FROM FATTY FOODS.....THAT IS A LIE....I EAT BACON...SAUSAGE...ICE CREAM ETC... IT IS THE BEEF!! AND THE NARCOTICS IF NOT CRUSHED. AND MORPHINE CAUSES SPASMS. PLEASE TRUST ME...AND GIVE IT A TRY. LET ME KNOW HOW IT WORKS!!
GOOD LUCK TO YOU ALL...AND BEST OF LUCK WITH THIS HORRID ISSUE.
Everything Brycenkenz23 (above) has shared is true! I have had this for
YEARS and have just now figured it out. At first, it was Horrible spasms
And inability to breath causing me to pass out. Which lead to hospitalization
And gall bladder removed. That was over 10 years ago. After having random horrific attacks through the years...I put 2 & 2 together and realized that I was suddenly allergic to Codine (which I had taken all of my life prior with no problem! Then,came reactions to vicodine. Then while hospitalized,
Given an injection of morphine and reglan. Oh that WAS HORRIBLE!! Shot after shot of bendedryl didn't work! then came wine reactions...I found that
A BIG mouth full of MYLANTA is the ONLY THING that HELPS the spasms calm down!! Sure, IT TAKES a good 30 minutes for it to kick in...But, IT DOES WORK!!! Followed by diarraha later that night or the next day of course. I just found out tonight after reading all of your comments and then looking up SOD...that I FINALLY found that OPIOIDS...CAUSES
SEVERE SPASMS. PARTICULARLY in patients that have undergone gall bladder removal!! So, It appears that we are all in this together, and for
The long haul unfortunately. now the secret is to NOTIFY all our doctors and hospitals that we frequent and FIND some alternative PAIN MEDICATIONS that we CAN USE INCASE of chronic pain (like I have) and, god forbid, any other type of emergency we may be faced with in the future without
Having to suffer this type of opioid fate again!!
It DOES WORK!!!!
DAIRY AND PORK ARE HORRIBLE FOR YOU. IT'S COMMON SENSE PORK IS UNHEALTHY BUT HARVARD HAS RECENTLY ANNOUNCED DAIRY IS ALSO. LOOK INTO THE CHINA STUDY.
I have this too.. Mostly if I've taken codeine or lortab for pain. Also found I cannot drink vodka. Not one drop. Not that I'm much of a drinker but when I did drink I always enjoyed a cranberry juice and vodka. That is no more. It does the same thing to me as the lortab.
So are you saying we may can take the pain medicines if we crush them? I don't know. I am very hesitant about taking anything every again! I took codeine earlier this year for a toothache and thought I was honestly going to die. I think I might have welcomed death actually. That hurt worse than my gallbladder attacks ever did.
I feel so much for you all that have this pain often. I too suffer from the IBS a lot. I take bentyl some but it gives me a headache (dull, long lasting headache) if I take too many (as prescribed) seems like. Sad..
Best wishes everyone.
I have had SOD for 11 years with 6 bouts of pancreatitis as a result. Any fried foods or foods with high fat like cheesy casseroles will send me straight to the ER. I now have to take enzymes when I eat, because the repeated bouts of pancreatitis have destroyed my ability to make enough pancreatic enzymes. I am on Levbid (same as Bentyl), Nortriptyline (which helps with spasms), Prilosec, and Zenpep (enzymes). This cocktail of meds has been a life saver. If I can feel bloating coming on, I also use 2 gas-x and it helps relieve some of the pressure. I have IBS as well. This is not an easy issue to deal with as you have to watch everything you eat and pray it doesn't cause the SOD to flare. Over the years I have learned to eat small, low-fat meals, absolutely no alcohol, and not to forget my meds! I forgot one of my meds for a couple of days and I spent a week in the hospital with a blocked duct and had to have surgery to unblock it! I don't forget meds anymore and make sure I don't run out! One other thing, Morphine is an absolute no no but I have been able to tolerate Dilaudid or Fentanyl when the spasms are too painful or pancreatitis flares...believe me if you didn't have some form of pain meds with pancreatitis it would not be bearable....worst pain of my life...natural child birth didn't even come close! Hope this helps.
Baclofen, start with half of a 10 mg.
You need to see another dr.
University of Utah Gastroenterologist Dr. Adler, If you are on the east coast, Dr. Bolt, he is the dr. they made the series, House after. Dr. Bolt is the complete opposite of Dr. House. You can find him online.
Seattle Washington has a reasearch hospital my sister sees for her bile duct surgeries.
Stop listening to doctors like they are intelligent, intelligence comes with specialists..keep looking.