need advise

[tristinstar1]

about 10 years ago i had my gallbladder removed they said it was over working. I had pain in upper right of stomach right under rib cage. The pain didnt leave. they did altra sounds mri and never found anything. My doctor decided to go into bile duct and look and found a stone. Then about a year later the pain returned and they found a blockage in my bile duct. they fixed it and about a year later i had pain again they found scarring at the end of my bile duct. now the pain is back and they did all kinds of test but wont go into bile duct. I know what this pain is. I had it for 10 years before a doctor would listen to me. They blamed it on irrable bowel sydrom and gass and what ever thing they could think to tell me but that wasnt the case at all.
I know it is dangerous for them to go into the bile duct cause I can get a pancreatis attack but could this be causing my pancreatis problem? I  cant toreate this pain anymore. They did find i have a fatty liver, Chronic pancreatis, Diabetes. So they are blaming the pain on all of this. I was given emzines I have to take everytime I eat anything for the pancreatitis. but nothing is being done for the pain they are not looking into what is causeing me all these problems. I have been exercizing but i dont feel good enough every day to do them. Could ther be a over all cause for all these problems. And could there still be a blockage that is causing these problems. I dont drink alchol i did when i was younger but havent drank in 15 years. My liver emzines are very high which always were with blockages how can i Get a doctor to listen to me. because nothing shows up on mri or altra sounds they wont do anything and all these problem and blockages never did show up in any of these cases. Any advise would be great im at the end of my rope.

[michell221]

sorry I had a typo it is called sphincter of oddi not shincter.

[michell221]

What you have is shincter of oddi .  It is a narrowing or spasm of the bile duct.  It oftens is discovered after GB removal.  You also stated you have Chronic Pancreatitis. The CP goes  hand in hand with SOD . Most people have both together.   Not all CP comes from drinking as in your case. There are 3 types of sod and it looks like you have type 2 with the high enzymes.  Type 1 has the best outcome with ercp and sphincterotomy , type 2 next and type 3 is rarely treated with ercp.

1 dilated bile duct, elevated enyzems and pain
2 dilated bile duct OR elevated enyzems and pain
3 just pain


   DO NOT let just any doc do an ercp to look at your bile ducts.  Many drs do not have much experience with this disease and treatment and will either not do it, do it and botch it, or hurt you worse.  There is a procedure to help with the sphincter of oddi.  It is called a sphincterotomy done through ercp procedure .  A cut is made to widen it and allow bile to go through.  A stent is placed that will pass in a few weeks.  This has a 50 /50 chance of helping.  The duct can also scar over and you have to keep getting it done until it cant be done anymore.  

Dr Peter Cotton in SC and DR lehman and Sherman at UNIV of Indiana specialize in SOD and chronic pancreatitis.  I would schedule a visit with them.  Most of us with this disease travel to see one of them since  they are the only really good drs that specialize in this. Until you see them you probably will not get much help.   We have all had drs telling us it was nothing because most GIs do not understand SOD or CP.My dr said IBS or motility issues until I went to dr cotton.  I chose to live with the pain since mine is not that bad and ercp can give you pancreatitis than can kill you.

   Chronic pancreatitis can cause daily pain.  Alot of people are on pain meds to help this out. Some have found relief through antioxidant vitamin therapy. Some have went so far as to have a puestow procedure, a whipple or total pancreas removal since they could not deal with the pain.   There is a great group on yahoo groups called a ray of hope.  These members have the same issues as you do.  Also facebook has a few small groups.  Just do a search there.