I am in awe at what has happened to me over the last year. I had a simple lapcholy in July 2011, and started complaining of upper abdominal pain about 3 weeks later, was told it was the CO2 and my body would absorb it, but the pain got worse, and worse, and finally, so bad, I was back in the ER. The next day, HIDA scan revealed I had a 5.2x6.4 bile leak in the upper right quadrant. I then had my first ERCP with stent. I had the stent removed in the second week of November. When they did the ERCP, the stent had corroded and was difficult to cannulate. In addition, my bile duct had closed shut, thus a sphincterotomy and another stent. After 3 hours of being home from that ERCP, I ended up with the EMTs coming to my home, sent back to the ER, where I had bacteremia from apparently the rotted stent. Boluses of antibiotics, again. Around December, I started having add'l pain in the upper abdomen and although I was told that the bile leak would absorb in my body, it had not. Then, I was readmitted to the hospital and a drainage bag was put in. That came out in late December, but in the meantime, I started having pancreatitis attacks, I believe. My upper abdomen and mid-back were in so much pain, it was piercing and nothing, nothing would eliminate the pain. I was then readmitted back in the hospital. I mean, I tried pain meds, heating pads, massage therapy, and it was completely overwhelming. I had another ERCP in January to remove the 2nd stent. All appeared to be well, until February when I became symptomatic again with elevated liver enzymes and chronic upper abdominal pain. They did an EUS, and since then, it's been all downhill.
My blood tests reveal elevated AP, ALT/AST and then I started to get super sick, foul smelling urine, stool, and my home wreaked of ammonia from me. My ammonia levels were high, 90 or so, as well as my iron binding capacity. My lipase when this all started was around 30, but now it is down to 5. My GI insists that I do not have chronic pancreatitis, but I cannot understand why every time I eat, I get sick as a dog, doesn't matter when, what time, or what I eat, and I've been on clears for weeks on end losing about one pound per day. My AP has run for about one year around 200, and is just down getting a little more normal. They appear to not be concerned with elevated AST/ALP and those go up when I either eat or take my medications. I've also developed a severe maldigestion of protein and fats, that are coming out of my stool and urine and malabsorption as well. I'm not understanding what is going on.
Finally, since February, I had literally complained of so much abdominal pain and GI distress, that it went on until April, while all the while, I'm dealing with elevated ammonia levels. I was readmitted, and was sent home two days later when my enzymes returned to somewhat normal, although still elevanted. One week later, I was readmitted to the hospital. I complained to my GI all along that I was in hurl over, fetal position in bed pain so bad and vomiting. The pain woudl wake me up in the middle of the night or hit me early in the morning, and was so severe, you'd think it was an rupture in the stomach or something. Finally, he was convinced to do another ERCP. And, I guess I shocked him -- he must have thought I was nuts -- the ampulla of vater had closed completely shut, and my bile duct and pancreatic duct were dilated. I believe those enzymes and bile must have been backing up into my liver, which might have been making me so sick, and after that procedure, I've been unable to eat solid foods.
Can anyone give me any idea of what I've been dealing with? I would say, that after just a few acute pancreatitis attacks, that the pancreatitis can become chronic and you may not show elevated lipase and amylase. I am not losing my mind either. The pain is so severe that is lays you out, you cannot eat and I cannot lay down on my back as well.
Something has went terribly wrong with the initial surgery to remove the GB. Will my lipase level as low as 5 cause problems in the future? This would be somewaht indicative of chronic pancreatitis, would it not? Also, when lipase gets that low, isn't there malabsorption and maldigestion involved? What about the ampulla and the sphincterotomy they had to do -- had to make a cut into it to open it up to release the bile. Will this close shut again?
My GI is not seeing the entire picture in my opinion. Any thoughts?
I suffer from many of the same symptoms as you and feel the same way about the doctors who are treating me. Mine started just over 4 years ago when I had my gall bladder removed and took almost 3 years to diagnose me with pancreatic divisum. I just posted a lengthy description of my symptoms and how the last 4 years have played out for me and asking for help or suggestions. I know how you feel. They tell me I have chronic pancreatitis and probably always will, make a follow up appointment, live with it, now go home. I don't know where else to turn for advice so if you make any progress please keep us posted! My thoughts are with you. I wish I could have been more help.