Post ERCP/Sphincterotomy pain

[lzbth]

I am 14 years post cholecystectomy healthcare professionial with sometimes debilitating RUQ pain.  ERCP w/spincterotomy in April, 2001.  Procedure was horrific - ended up wide awake during sphincterotomy due to dehydration and problems with anesthetic.  Post-op pancreatitis.  Needless to say, I have changed docs - new GI doc wants to do another ERCP and possible sphincterotomy, possible biopsy (hx of Crohns dis.) Hida scan shows SOD.  Liver enzymes elevated.  And now, the pain has increased and today, is unbearable.  May have to head to the ER.  Any pearls of wisdom?? I am terrified of another ERCP, but can't continue this cycle of pain & weight loss either.  Any help, anyone?  Thanks!

[tld1973]

I'm sorry to hear that you had such a bad expierience with the ERCP/sphincterotomy, I had one done in May 2001, after gallbladder surgery in April 20001 it was for a choledochal cyst I was born with {dialated bile duct} causing repeated acute pancreatitis attack and now chronic pancreatitis, and I didn't remember a thing, one of my biggest fears was waking during the procedure, that must have been terrifying for you! I had an attack right after too, but recovered qiuckly, I now have pain every day, the procedure didn't help unforunatley, so I may be having another and I'm just as scared as I was the first time. my liver enzymes are elevated now too, hmmm I wonder if has anything to do with the sphincterotomy? I'm glad you got another GI, hopefully if you have another ERCP everything will go smoothly with this new guy.
good luck!
Tanya:}

[Baseball_Mom]

Needless to say the both of you are not alone.  I too had my gallbladder removed earlier this year (April 11, 2001).  Continued to have pain after my surgery.  Had CT Scan after CT Scan, and MRCP, and tons of blood work.  Finally on the 14th of November I had an ERCP with Sphincterotomy done.  My procedure went remarkably well (according to the doctor).  He didn't even have to use any dye and was convinced that I dodged the Pancreatitis bullet.   Lucky for me he kept me overnight for observation.  At 11pm on the 14th Pancreatitis set in.  It was the most gut wrenching pain I had ever experienced.  I'm a currently being treated for Acute Pancreatitis.  A couple weeks ago the doctor did a bunch of blood work and last Wednesday I had another CT Scan done of my abdomen.  I go back to the doctor tomorrow to find out the results of the blood work and CT Scan.  The doctor suspects that I have developed cysts on my pancreas for me to continue to be in pain. He did prescribe digestive enzymes which have helped a little bit.  I still have the gut wrenching pain after I eat but it is not as severe and does not last as long since being on the digestive enzymes.  I would be interested in hearing what the doctors have found out with the two of you.  Please keep me posted.  You can email if you would like.  My email address is:  ***@****   Thanks for your time and Happy Holidays!

[TOOTINA]

CAN YOU TELL ME MORE ABOUT A CHOLEDOCHAL CYST. I ALSO HAVE VERY DILATED BILE,CYSTIC AND HEPATIC DUCTS AND NO ONE CAN EXPLAIN WHY. I CONTINUE TO HAVE RUQ PAIN AFTER EATING. I HAVE HAD A ERCP IN SEPTEMBER WITH NO RESULTS EXCEPT VERY DIALTED DUCTS WHCIH THEY SAY ARE NOT CAUSING THE PAIN. I WOULD APPRECIATE ANY INFORMATION..THANKS.

[kaya]

Hi, I also had a terrible ercp, woke as well, pancreatis, unbearable pain, put me on a pain drip, which caused me to lose consciousness anyway instead of another ercp how about a MRI, theres a special one (I forgot what it's called) thats very minute and shows everything or an EUS that's like a ercp but less invasive and is suppossed to show more. Please try to stay away from having another one, I made the mistake of letting them give me 3 and now am in alot of pain, which I don't know if it's directly from that.  Alot of drs. look at my records and can't believe they did that to me and say it may be the cause of all my pain now.  Thanks Kaya

[tld1973]

Hi, I read your post about wanting more info on choledochal cysts, they are very rare and alot of doctors don't know much about them, up until this past May, I didn't know what a choledochal cyst was, and it's been causing acute attacks of pancreatitis in me since childhood, here are some links to sites that have info on choledochal cysts, they are very informative, there are different types of cysts, mine is a type 3, choledochocele the call it. I'm now going to a specailist GI doctor who's main specailty is diseases of the biliary tract, here are the links, I hope they help you:

http://www.emedicine.com/med/topic349.htm

http://www.surgical-tutor.org.uk/default-home.htm?system/hnep/choledochal.htm~right

http://www.amwaw.edu.pl/ppch/2000/0002/200co.htm

http://www.pedisurg.com/PtEduc/Choledochal_Cyst.htm

and if you want you can also do a search yourself, I usually go to google.com, you just type in choledochal cyst and a bunch of sites come up.
good luck, hope this helped.
Tanya:}

[TOOTINA]

THANKS FOR THE INFORMATION...I APPRECIATE ANY HELP TO TRY AND FIND OUT WHAT THE PROBLEM IS...SINCE MY GASTRO DOC THINKS I HAVE IBS. THANKS AGAIN ....HOPE YOUR HOLIDAYS ARE HAPPY AND PAIN FREE!!!!

[lzbth]

Kaya - thanks for the re-ERCP warning, but I don't have a choice.  I'll be having a stent put in to hold open the scarred area.  The new doc has promised that he won't let me wake up.  What an ordeal - sorry to hear that you experienced it too!  I did have the HIDA scan - and it showed the scarring of the ductwork. Good luck with your healthcare!