Can this condition be controlled. The doctors seem to be stumped. It’s hard to find a doctor that knows much about the pancreas, they keep wanting to do more ERCPs which puts her into a pancreatitis attack. They have cut ducts but hasn’t helped. This has been going on for 2 1/2 yrs.
Hi there–
I’ve gone years with the same problems-- More and more ERCPs all followed by bad exacerbations of pancreatitis-- getting more and more sick (they did stents, balloons, Botox, and numerous sphincterotomies that never held).
This time they decided to keep me on the TPN for a few months-- and while a bunch of people on this site reported problems from infections to liver failure from long-term TPN (total perental nutrition-- only through an IV letting the pancreas rest completely without anything going in the GI tract)-- I’ve been on it about a month now–all at home once they got it “cycled” at the hospital-- and I’m slowly starting to feel better than I have in years. It’s tough to not eat/drink, but if it works, it’s so worth it. I won’t know until we start re-introducing liquids and then solids if my attacks will stay away. I’ve been in chronic pancreatitis for over a year-- idiopathic (no history of alcohol, etc.-- just had been a healthy eater and athlete and then got hit with it after a gallbladder removal).
Hope this helps-- or at least gives you some info or hope.
All the best,
Lisa
I have to reply to this because I have had similar experiences. I have had 3 ercps and every one of them throws my pancreas into absolute chaos. Then the doctors act like it’s my fault that it takes 3-4 wks before I am no longer in screaming agony. The first one, fine. But when I went to UC Davis and UC San Francisco you’d think they would try something else. (I even brought my previous films) But no, all they did was another ercp then tell me there is nothing they can do. I was treated very badly at both places.
Just watching your diet very very very closely seems to be one of the best thing to do. Very very very low fat. I did zero fat grams for about 3 months, then less than 5 per day for about a month or two, then less than 10 grams per day for about 6. I still try to stay below 10, or at least no more than 3 grams in a meal. Take the pancreatic enzymes so the pancreas doesn’t have to. Othe than that, its russian roulette. I think most of the doctors don’t know anything about the pancreas. I’ve had doctors who didn’t even know where it was located.
Dear Karas-matic: Thanks for writing about your experience with ercps.
They are the pits. How do you stay on a low fat diet. I work really hard
to cut out fat, but it seems like I lose too much weight when I do. I take
two or three Creon 20 every time I eat. Any diet ideas would be much
appreciated.
Thanks!
Ellen