Dear Nikkihoots, and the rest of the group,

So sorry to hear about your pain. I too have pancreatitis and it took over three years to diagnose. They put a stent in about six months ago, and my lipase was in the thousands as well, and after the stent was put in, I still had flare-ups and pain. Then I found out that I was on the wrong enzymes for five months. It seems the head pharmacist decided to make her own call on the enzymes rather than heed the specialists orders of no substitutes on enzymes. When I got on the right ones, had tremendous flare up for three days and couldn't take the pain anymore and went to emerg. There are times when I cannot hold any liquid down at all. I tried drinking some powdered herbs and ended up vomiting for 7 hours at least 20 times, couldn't hold water down either. Only bile was vomited out. It seems I have stones in the duct of the pancreas. The next treatment was to go to a large city, a flight away, to a major hospital to blast these stones. Before the procedure, I got to see an xray about one hour old, an ultra sound of the pancreas, and a CT scan. I could see the stent. It was about 4 inches long, what ever good it was supposed to do I do not know. This stent will not come out naturally. It has to be removed. I spoke to a patient in the hallway who was treated with stones, and had a stent put in as well, who had been in the hospital for 7 months. He lost 95 pounds. Seems the stents are a 'hit and miss' procedure and they have a curved piggy tail on them and when they are shot into the body, hopefully the doctor gets it to the right place it attaches itself. In this mans' case, it lodged somewhere it shouldn't have and caused tremendous pain and inflammation.
So after a six hour wait in a hospital gown in the hallway, and another x ray I was escorted into the specialist's office. Three huge screens. As I mentioned before the first was of the spine and stent, couldn't see any stones. The second, yes, I could see the stones. The third picture was the CT scan and I saw my pancreas pulsating. The doctor looked at me and told me unfortunately over one quarter of the pancreas is dead. I was stunned and flabbergasted just minutes before the procedure. I also needed to sign a release form for the procedure called a lithotripsy to blast the stones through with radiology into the stomach area at 2500 p.s.i. A release form needed to be signed as this procedure could cause more damage. 45 minutes later and fully awake after the sonic blasting, I was again in tremendous pain. Seems the next step is to have the pancreas surgically removed, however, this was not recommended to do this. So where am I now? It's been over a week since the procedure and I'm trying to wrap my head around all of this. The facts are, I have lost work and finances over three years because of
this horrific disease, and I am to carry major pain meds with me, my bones and sutures in the skull and the rest of my body have separated and have become 'high risk' for fractures etc., another unusual issue to deal with because of malabsorption and malnutrition, my friends are suddenly not wanting to hang around me anymore and my fianc who is a lawyer, decided, to put our engagement on hold for a few months already and doesn't speak to me when I text or reach out and sorely need some support. My two daughters have disappeared from my life as well. So where does a person go from here? I feel totally emotionally numbed out and somewhat depressed. I seem to be making insulin still, how? Who knows????
So please, hang in there all of you and realize that every step of this journey has to be carefully thought out, as anything that is done for you is basically trial and error. Sometimes you win, and oftentimes you do not. I am coming to the point of accepting all this nonsense and deciding what I really need in my life. Thank you for letting me share my ordeal with you all. It is helpful to have someone to talk to about it all. I personally am just about 'done' with all of the testing, poking, prodding, pain, and uncertainty.

I was hospitalized in 2014 with pancreatitis and it was the most excruciating pain I've ever had.

And, my lapase numbers were also @ 59,000 which the attending physician told my husband he had never seen numbers this high in all the years in his career as a doctor.

I was so stoned on Morphine that I was flying high and the doctor then asked me if I wanted a preist, I snapped out of my stuper long enough to say no because if I was going to die, I did not need to confess my sins to a man.

Needless to say, I was in the hospital for 4 days with nothing but ice chips to eat and intravenously poked.

Have never had it again, thank god !

I've had 3 episodes of acute pancreatitis before I developed chronic pancreatitis and the standard treatment didn't change from the first in 1967 (I was 9 years old and it was the result of the mumps virus) and 2014. You'll get nothing by mouth (just IV) until you improve and medication to help with your pain. Your pancreatic enzymes are being checked (among other things) at least once a day. I can tell you that my symptoms improved as my lipase level decreased. I knew I was much better before the doctor ever told me what my lipase had decreased to. You'll be introduced into eating again starting with clear liquids. When you can tolerate solid food, you can go home. The pain is tremendous and wasn't being managed well for me in 2008. If you are still in too much pain to get comfortable, request a consultation with a pain management specialist. They are anesthesiologists and know their stuff. When you are discharged, the hospital may provide you with a low-fat diet. It's worth following. If you still have symptoms after you have recovered, see a GI for further evaluation.

I'm not sure what my lipase numbers were, although I know they were elevated. I had severe acute necrotizing pancreatitis brought on from high triglycerides. When I was admitted those levels were 9,000... 300 being enough to be too high. The pain was excruciating, and I thought it was an ulcer or gastritis. I didn't get many answers until I winded up in the E.R. one day unable to move from the pain and vomiting. I had formed a pseudocyst which grew up to 6cm and miraculously went down to about 1 cm.. on it's own. I also suffered a pulmonary embolism, and pneumonia. I don't know what was worse.. trying to get up and walk or not being able to catch my breath. I was stuck on morphine for 2 weeks straight and had a feeding tube. Replaced twice. As the first feeding tube didn't go past by stomache, which was causing further damage and inflammation to my pancreas. I've been clear for two years now with the help of two lipid lowering medications. I had to take enzymes for a little while when I was released. For some reason during that time of the month, my pancreas does hurt, but it's due to scarring and I believe hormone surges. I wonder what was the cause for yours. I have familial hyperlipidemia, hylocycronemia syndrome.. has a lot of different names I guess. I can't drink alcohol period anymore. I wonder what is causing yours. They couldn't find my pancreatitis with ultrasound, or x rays... only a ct scan.