Severe epigastric pain 5 years post recurrent attacks of pancreatitis and finally a cholecystectomy 5 years ago

[Treefroghugger]

I am a 30 year old female. 10 years ago I started with severe abdominal pain diagnosed pancreatitis with amylase levels over 500. I have had my amylase fractionated and it is coming from my pancrease (not salivary or ovarian). Severe acute attacks intermittently managed with pain medication and diet (good days and bad days type of thing) for 5 years before I finally had a CCK HIDA with an ejection fraction of 7%. Unable to schedule surgery sue to demanding accelerated ivy league senior year it was one more excruciating year until I had my ex-lap and cholecystectomy. That was five years ago. The pain gradually got better with careful dietary management and 3 years of annual MRI to check for pancreatic changes, cancers and pseudocysts, all negative. I have also had an MRCP (negative). Two years later here I am with yet more epigastric pain radiating from just under my zyphoid through my right rib cage and into my back for three weeks. Very distinguishable pain from heart burn or lower abdominal cramping. Worsened by any type of solid food (fatty more-so than others). I am getting married in 3 weeks and my understandably conservative GI doctor feels ERCP, pressure monitoring for  SOD or Sphyncterotomy may yield more risk than benefit at this point and is sending me for an endoscopic ultrasound.  I do not vomit nor do I have diarrhea (if anything I am quite constipated).  I also do no not have elevated LFT's or lipase levels, and only slightly elevated (120) amylase levels which is surprising since this identical to the pain I was having with the acute attacks of pancreatitis. I am being managed with low dose hydrocodone only taken when I am working (high stress, active, nursing job) in order to function, otherwise I am incapacitated. I have tried supplemental enzymes for months (creon 20,000) with little (maybe placebo-like) relief.
Theories now are SOD and IBS. I am thinking obstruction of my pancreatic duct and possibly my amylase/lipase levels are not elevated due to "burn out". The pain is soo bad and I feel if it was IBS there would be a change in my bowel habits. SOD is also a great possibility so  I mentioned Botox for my SOD instead of the more invasive and dangerous manometry but was reassured my insurance would not pay for such a thing.
I am adopted with no family history and the pain seems to get more prevalent with stress. I am wondering if we are on the right track with the endoscopic ultrasound?  Can a sphyncterotomy be done at the same time as the EUS without the daunting Manometry? Please help. I need a seriously educated opinion.
Sincerely,
Treefroghugger

[jrb2284]

Hi, I've had many similar episodes since August 2008. It started out with gallstones and the removal of my gallbladder. Then, I kept having elevated amylase and lipase levels, which required hospitalization for pain meds, fluids, and iv nutrition many times. In my case, when my lipase and amylase levels started to return to normal, I wasn't better like the drs said I should be...I still had really bad pain and if I would try eating or drinking too soon it would flare things up all over again. I couldn't have any fancy tests done because I had gastric bypass. I was finally diagnosed with chronic pancreatitis July 2010. Please contact reply and let me know what you've found out!

[crambone]

sounds like your acute pancreatitis is now what you would call CHRONIC pancreatis...this does not go away,,all you can do is manage it with pain meds,and diet,,,,,docs will keep you comming back to make the money,,,if they simply told you the probable truth,you would have no reason to come see them anymore