Oh good grief, 6 ERCPs?? I'm sorry you've had to endure these. I am scheduled for another on on 1/4/02 to place a stent. I had ERCP w/sphincterotomy in April, but woke-up on the table - became quite agitated and am not confident that the dr. really did what he said he did. I have a new dr. now and he wants to place a stent and see for himself exactly what is going on in there. I am not looking forward to this procedure again.
Did your stent help? I have not tried the pancreatic enzymes. What can you tell me about them?
I can't help you with your questions about SOD, but can answer any questions you may have about enzyme supplements. I have chronic pancreatitis and have been taking enzymes since July to help me digest food, not have pain with eating, and to gain weight. They have been very helpful for me and I am able to eat a lot fat diet with few problems, and have gained some of my weight back. If you wish me to answer any more specific questions, please feel free to post again.
Hi, I have both chronic pancreatitis and SOD. I am also taking enzyme pills. I had a ERCP with Oddi sphincter monometry in July. I had a HUGE pancreatic attack right after that. Levels were 1999 and 5000. I was in the hospital for 10 days. I would say that the surgery helped to a point. Lately things have been getting worse. I have not gained any weight on the enzyme pills. I didn't know thats what they were for. I am on a low fat diet. 25 grams of fat a day or less. I know that I am having attacks almost everyday, but not big enough to go to the hospital. I am waiting in fear everynight, thatthe next big attack is coming. I am at the point right now, that I am almost wishing it to come, so that it is over with and I don't have to worry about it again. All I know is that there is no cure for this. I would be glad to answer any questions you might have. If your asking was the surgery worth it, I would have to say yes, despite the attack that followed. I do believe, that for a time, it really reduced my pain. Unfortunatly, they are back and getting worse. I have only had 1 ERCP. I know of several people on this forum that say they have had many. I have not had any stents.
Hope this helps.
WOW, IT SOUNDS LIKE YOU HAVE BEEN THROUGH ALOT TOO... SOMETIMES IT FEELS LIKE IT'S NEVER GOING TO END AND I WILL NEVER FEEL WELL AGAIN. THE FATIGUE IS DIFFICULT TOO. I'M NOT SURE IF THE ENZYMES ARE HELPING OR MAKING ME FEEL NAUSEATED RIGHT NOW, OR IF MY ENZYMES ARE GETTING HIGHER, THEY WERE OVER 500 WHEN DRAWN FRIDAY.
DO YOU EVER FEEL JUST "SCARED"??
HOW AWFUL TO WAKE UP DURING THE PROCEDURE, THAT IS MY WORST FEAR.. I ALWAYS TELL THEM TO "LOOP" ME. I HAD ONE STENT BEFORE IN MY COMMON BILE DUCT AND IT MADE ME REALLY SICK SO THEY TOOK IT OUT, THEN CONTINUED TO GET SICK AND HAVE ELEVATED PANCREATIC ENZYMES, SO THEY PUT THIS STENT INTO MY PANCREATIC DUCT. I THINK IT IS HELPING SO FAR, BUT THEY CAN'T LEAVE IT IN PERMANENT.
GOOD LUCK WITH YOUR PROCEDURE, AND STAY STRONG
DID THE ENZYMES MAKE YOU FEEL NAUSEATED?? DID YOU FIND YOURSELF CRAVING SUGAR??
IT MAKES ME NERVOUS TO TAKE THIS WITH ALREADY ELEVATED BLOOD ENZYMES.i DID NOTICE THAT I DIDN'T HAVE ALOT OF PAIN AFTER EATING AND DIDN'T NEED TO RUN TO THE BATHROOM. I'M NOT INTERESTED IN GAINING WEIGHT, I HAVE BEEN LOSING, BUT AM NOT UNDER WEIGHT RIGHT NOW. HOW MANY GRAMS OF FAT DO YOU EAT DAILY? WHAT IS YOUR SAMPLE DIET LIKE??
The enzyme supplements have not caused me to feel nauseous, but I often felt nausiated before I started taking them and was unable to eat. When I ate, I would often vomit, causing me to not absorb any nutrients, which caused me to lose weight. Or not eat enough, due to the full feeling it gave me. The nausea is common with pancreatitiis sufferers and most docotors prescribe Phenergen to help with the nausia, or sucking on a slice of ginger-root will work as well. The lack of nutrient absorbtion also made me very fatiqued all the time, so it was really critical that I be able to eat and get nourishment. That is probably why you are so fatiqued, another complaint of pancreatitis, it means you aren't absorbing enough essential nutrients. My doctor also prescribed several vitamins that also help, Vitamin C, B-1, B12 and folic acid. I am now on antioxidant therapy which has completely eliminated my pain, but that is another story.
My daily fat consumption is limited to 20 grams per day, spread out through several small meals and snacks. I eat fish, turkey and chicken, pasta, bread, vegetables and fruit. Brown rice, beans and potatos, use only no-fat or low fat products, and never use oil for cooking. For example; yesterday I had juice, a bagel, an orange, a box of raisins, a turkey sandwich with lettuce, tomato and reduced fat mayo, two handfuls of chips, two handfuls of mixed dried fruit, a chicken burrito with brown rice, beans, peppers, cheese, salsa and sour cream, an ear of corn and Healthy Choice ice cream for dessert. Total fat intake for the day was 15.5 grams. I had to pass by the Christmas sugar cookies..... I also drink at least 60 oz. of water or iced tea every day. I hope this upcoming surgery can help allieviate some of your problems, surgery is not on my adgenda as yet.
THANK YOU FOR YOUR REPLIES AND INFO ON DIETS. I THINK I KNOW WHY I FEEL SO BAD TODAY, I SNUCK TOO MANY COOKIES. MY BODY STILL KNOWS WHEN I EAT WRONG. I HAVE BEEN SCARED TO EAT. SO MOSTLY IT'S BEEN SOUP OR A BAKED POTATO. IT SEEMS NO ONE IS REALLY FOCUSING ON DIET WITH ME, DR'S I MEAN.
I'M HOPING THAT ALL THESE SYMPTOMS WILL BE GONE WITH THE NEXT ERCP, I CAN'T IMAGINE CONTINUING TO LIVE DAILY LIKE THIS AND WITH THE FATIGUE. I WORKED IN A MEDICAL OFFICE MYSELF, BUT HAVE NOT BEEN AT WORK SINCE OCT., IT'S DIFFERENT BEING ON THIS SIDE.
THANK YOU BOTH AGAIN..
Just thought I'd add my diet intake in here too.
For breakfast I have Raisan Bran Crunch with fat free milk. I have a banana for a snack. For lunch, it's turkey on wheat bread with fat free mayo and fat free chips. I have ice tea or water with this. Snack in the afternoon is fat free pretzels. For dinner I can something like boneless, skinless chicken baked in a coating iin the oven. No oil. I make this with rice pilaf...no butter to saute. Just use Pam to coat the rice. Green beans for veggies. And low fat Healthy choice ice cream if I want dessert. That whole days worth of eating is about 15 grams of fat or so. It is possible to eat good and low fat too. As I have said before, you are only human. Do not deny yourself a treat every now and again. You may hurt a little afterward, but you won't suddenly go on a binge for something and then hurt WAY bad. If I eat out at a reastuarant, I try to get grilled chicken. At fast food, it is a grilled chicken sandwich with no cheese or mayo. Everything in my house is fat free or low fat. You will get use to fat free tastes of everything. As far as craving sugar, you are right. I hadn't given it a second thought until I read what you wrote, but since I have been on my emzyme pills, I can't seem to get enough swedish fish. Fat free, but has sugar too. Hope this helps. Also I have not lost any weight on the enzyme pills, and am not under weight. That has never been a problem for me. I only throw up during a ER attack. But do feel nausous quite a bit and the feeling of being full after eating only a little food is wnough to make me not eat at all.
Thanks for your concern. Yes, it was grizzly to wake-up during the ERCP. It took all three of them to hold me down and keep me from pulling the scope out of my mouth. Having that thing down your throat is really quite painful when you are awake. There had been a problem with the anesthesia - my BP plummeted - and so they pulled back on the anesthetic. Hence, I woke up while he was doing the sphincterotomy at the pancreatic duct. Needless to say, my pancreas was quite unhappy for the next couple of weeks. The new doc says that he'll try the stent and if it works, then he'll go back in a few months and do another sphincterotomy. Plus, he just wants to take a look for himself. I have to say that when I let myself think about another ERCP, I really do get a little bit freaked-out. Even working in healthcare - well, maybe it's "especially" working in healthcare - because you know about all of the things that can go wrong and you also know that sometimes the docs just don't have all of the answers.
Well, best of luck to you. If you like, you could email me at ***@****. Happy Holiday! (happy as they can be without BUTTER!!!)
I have a general question here: have any of you discussed with your doctors the possible cause for the pancreatitis in your specific case? Nanny, you answered my question in a general way a short while back (thanks, I appreciate it), but I wondered if anyone would care to share what the specific cause(s) might have been in their individual case. Thanks.
In answer to your question, my pancreas/bile duct problems stem from scar tissue build-up post-cholecystectomy (15 yrs). Also have a 25+ year history of Crohn's disease that may also be part of the scarring. Am hoping that the upcoming ERCP and biopsy do not come back positive for primary sclerosing cholangitis - which is a distinct possiblity. That would be an entirely different ballgame.. . . .Best of holiday wishes to you all!
The doctor does not know what causes me to have chronic pancreatitis and SOD. It is believed I had this before I had my gallbladder out and no one thought to check for that. Also, I went on a DRASTIC diet and exercize program. Dropped 42 pounds in 2 months. But, some of that could be the pancreatitis too. I do not drink so that was never a factor. Pancreatitis can he heriditary. And also, mine may have been made worse from the gallbladder being so bad. At this point, it really doesn't matter what caused it, just that I have it and that there is no cure. That is the big, fat bummer part of it. My son, God bless him, sat on Santa's lap and asked him to bring me a new pancreas for Christmas. I almost cried.
Thanks to all that have listened to my story. Merry Christmas to you all.
Thanks painfree wannabe and TazLady for your responses. I wish you and your families a very happy and HEALTHY holiday, and the same goes to everyone else here.
A related discussion, Inflamed Pancreatic duct