Just wondering where you got your info on differating between cancer of the pancreas and chronic pancreatitis? I have been diagnosed at a well known univercity with chronic pancreatitis and SOD and never once did they tell me I could have cancer of the pancreas, or that they couldn't tell if it was. All they said is that there is a higher chance of getting cancer of the pancreas with any form of pancreatitis. But also that chance isn't really that much higher than with a healthy pancreas. Looking forward to what you have to say.
In my situation, the pancreatic duct has narrowed,and the doctor explained that sometimes theres a tumor pressing on the duct, and that sometimes those tumors are too small to be seen on a catscan or even a MRI, and thats why they did the tumor marker test which came out normal, BUT, there is a chance that it could be missed this way too, the reason he wants to do another biopsy is because I did show cellular changes within the duct, and with the choledochocele in my bile duct I'm at higher risk than normal for cancer of the bile duct or pancreas and this could indicate the start of a malignancy,but he also explained that it could just be chronic pancreatitis and my pancreatic duct has narrowed because of continuous acute attacks over the years, and every case is different. the thing thats confusing me now is why my liver enzymes are elevated,I go back in a few weeks to see him and talk all this over, I'm still in so much pain and so sick of being sick, I'm nervous about having another ERCP too, the last one caused a nasty attack, but i guess I'll have to if I want some answers! I wanted to ask you, are you on enzymes for your pancreas? do they help if you are? I haven't really noticed too much of a difference in pain or diarrhea.
I have narrowed ducks too, but not changes in cell structure. I am on enzyme pills and OH YES they work beautifully. I am feeling much better since being on them. I try to stay on a diet of less than 25 grams of fat aday. No oil, butter, low sugar intake and such. That really makes a difference. I also had a bad attack after the ERCP. Spent 10 days in the hospital. Amalyse level at 1000, lipase level at 5000 and potasium VERY low. Good luck to you. Remember your not alone in any of this. There are others out there with this dreaded disease.
Thanks Sandy, I wish you luck too, and it is good to know I'm not alone!
THIS IS LONG, BUT I REALLY NEED HELP, SO IF ANYONE COULD PLEASE READ THIS AND OFFER THEIR STORY OR OPINION I WOULD GREATLY APPRECIATE IT. THANKS.
I found this conversation very interesting and was wondering if ANYBODY could help me. I have had severe pain in my right side for about 7 months. I started with what I called and "attack" of some kind in the middle of the night. Then had the pain on and off for a while, then it became more and more frequent. At first, because I was diagnoised with Irritable Bowel Syndrom they said that was what it was and was proabably at the area of the tranverse colon.
Finally my doctor sent me for an ultra sound and it should a swollen panreas at the head. Then, they did a CT scan and it showed a swollen pancreas and narrowed (or something like maybe hardened???) ducts at the bile, liver and pacreatic ducts.
Then they did blood test that show my liver enzymes as very low. The test paper came back to me as abnormal, but the doctor sent a note saying that with the low result that meant there was no problem. I am still having a lot of pain on the right side where the pancreas is, in fact during the ultra sound everytime the tech pushed on a certain spot I would jump up because it hurt really, really bad. She kept saying that is your pancreas.
Along with the pain came severe nausea and vomiting (which I never have ever had, although I do have a history of chronic pain with FMS), they always happened almost at the same time, but then I started getting the pain and then throw up and then diareha. At that point I started throwing up every night between 8 and 9 PM.
My primary care doc sent me to the GI doc when all the tests came back and asked if I should have a ENCR or something like that where they put a tube down your throat and look to see what is going on in there.
When I saw the GI doc and he found out I had FMS, he was very rude and said that because my liver enzymes are normal (abnormal-low is what came back from the lab) he did not believe I had any problem with my pancreas and that the narrowing in the bile, liver and pancreatic duct were just what I normally looked like, and that my symptoms did not correlate with a pancreas problem.
I also have endometroisis and have been taking a nasal spray for it for 11 years, which is a GnRh agonist, which supresses the pititary. The medication is specifically made to only be taked for 6 months, but it is the only thing that works to help with dibilitating pain, so, as far as I know it is unheard of for anyone to be on Syneral for more than 6 months, as I started on it as a study drug. I do have a history of endrocrine problems and am on a medication that has never been used or studied to be taken this long that effects the endrocrine system. I just learned that the pancreas is an organ related to the endrocrine system.
The GI doc told me he thought I had a rib problem, that was causing the bone pain from FMS. Although, the pain is near the upper rib and underneath the rib, it does not hurt on the rib. It hurts in those areas and through to my back. The pain got so severe that they put me on morphine long acting tablets and then started me on liquid morphine for break through pain. It works, but I was put on the morphine for pain in my right side, and then the GI doctor says that the problem with the pancreas could be from the morephine, but I only started taking the morphine about 5 weeks ago and have been going through this right side thing and testing for the last 7 months.
None of this makes any sense to me, except that I now have blood pressure falling as low as 40/35 confirmed by ER and the plan is that I take it at home and every time it drops to below the 80's I am to call 911. Often it is in the 60's (top number). Then I got a rapid and very high heart rate up in the 140's and over. No one seems to know if they are related, but it seems to me that with what has shown up on the CT scan and the Ultra sound combined with my symptoms, there should be some kind of action to determine what is going on with those ducts, pancreas, and pain. The plan right now is to just stay on the morephine, as they say that after a while I should be able to drive on it.
I am totally uncomfortable with this plan. I think they need to find out what is wrong, but they have just chalked it up to FMS.
PLEASE, PLEASE, PLEASE, ANYONE who knows anything about this or has any clues or stories of their own, let me know thier opinion or story, so that I might be able to ascertain the proper direction to go in.
OK Ashwin, first, you need to have every lab test on your blood work ran and then two weeks later run them again...you could wait a month because some things are very subtle but they still could give you some insight. You need to get off the narcotics, they are very hard on your body and getting off after a long addiction can be some long days and nights. Especially since your symptoms will worsen trying to fight disease and addiction. Try ultram, up to 300 mg a day...this one will help with the diarrea also. If your drinking alot of cokes and eatin junk food stop doing that too. Another thing that has helped me is a anti-anxiety drug called doxepine(may make you drowsy). I don't have the exact same problems and symptoms but I know pain and the way it makes you hungry for answers. Those answers are in your blood. See another doctor if you don't feel good with one, find out about rare diseases. Get copies of your blood work and always have them with you when you go to appointments. Find out what abnormal results mean for every different test. You can find everything you need to know online. Be prepared for anything, if at all possible. If any answers are to be found, your gonna have to help. I hope this letter helps, if it does not, I'm sorry. I don't think askin God for help would hurt either, I think he does listen.