Did you find a doctor to treat you in St. Louis. I am having similar problems and need to find someone to diagnose me properly. Any luck with your referral? Would love to hear your outcome and doctor's name. Good luck to you.
I did find a doctor in St. Louis. His name is Dr. Edmundowicz. He is wonderful!! He is treating me with nortriptyline for 6-8 weeks and if that doesn't help then he is going to do the ERCP procedure. I really liked him and his nurse practioner as well.
I have not noticed any improvement yet with the nortriptyline and I have been on it about a week now. I hope it works but if it doesn't I am confident that Dr. Edmundowicz will find some way to fix me.
Good luck to you too!!
Hello, I am sorry to hear this has happened to you. I live in Michigan and I also had these same sypmtoms about 4 years now. I had my gallbladder removed then and was in and out of E.R. for a few months, during which time I was refferred to several different gastroenterologists. After seveal catscans with and without dye, and tons of blood work, I was sent to the University of Michigan for the best Gastro. Dr.s in our state. They decided to go in and do an ERCP with monanmmatry which is basically where they do an endoscopy and while they are in there they take pressure readings of your oddi muscle. If you have not yet, educate yourself on the oddi muscle. They decided to take xrays up close while they were in there and pulled out and proceeded to tell my husban and mom, who were with me, they also found nothing. However, the person who was developing my xrays came running out and said, "We've got it!" They found what looked like the size of coarse salt granuales, stuck in the bile ducts right near the oddi. So what happens is your oddi muscle causes you all the pain which is probably what you are dealing with, because it contracts, and squeezes very tightly, trying to pass those bile stones!!! So they ended up doing and ERCP w/manommatry and sphincteratomy, which means they did the pressure readings, which were normal for me but could be high for you, causing the terrible nauseau, but they had to cut the muscle and clean the stones out of the bile duct. There are some risks to doing this procedure but for most people this fixes them, end of story, never to deal with again!!! Not so lucky for myself. I had problems immediately, I had blew an artery that circles the oddi and lost a ton of blood so had to be hospitalized for about a week. So that should have been the end of my story but unfortunately it still isnt. I live with the pain you are feeling, every day of my frickin life!!! Let me tell you, I know about being at your witts end and it *****!!!! What happened is I went back to U of M and they told me that I am now one of the unlucky, less than 7% of people who live with chronic pain the rest of their lives. I have 5 kids and I just turned 29 so life is extremely rough!! So I hope you find a great gastroenterologist and they get things moving for you and I pray that if you do indeed have stones stuck and need them removed, that it will be the end of story for you, fixed, healed, never to feel naseauated or pain again!! Good luck to you!!
Oh...my you have been through a lot!! I, too have had many CAT scans all with dye and they always tell me they are normal. I have had the MRCP which came out normal as well. My doctor in St.Louis put me on that Nortriptyline....50mg. I just called them today because I haven't been feeling any better. So they said to up it to 75mg. So I will see how that works. Yeah, I was wondering if I could have the granules in the bile duct. I wasn't sure if they could see those via CAT scan or not. St.Louis told me that if this doesn't work then they will most likely do the ERCP. My doctor in St.Louis is very educated in ERCPs so I feel really comfortable with allowing him to do it. He actually does a few different things to try to minimize your chances of getting pancreatitis.
I am hoping this Nortriptyline works though. We shall see. It is miserable feeling. I am on Zofran and on the highest dose I can take by mouth anyways and it is not even eliminating the nausea.
Is there anything that you can pinpoint that might make your SOD worse? I have been trying to think about my symptoms but I have them everyday all day regardless.
I am a college student in the middle of college and soon I am transferring to another school and I am so miserable.
I am experiencing the same kind of problems described here.I had my gallbladder removed 4 years ago and have had pain but just recently the intensity has grown. Pain, nausea, bloating and some diarheaa. I have had 2 colonoscopies, CT scans, and countless blood work which of course has been normal. I have told the docs that it's like a gallbladder attack that persists every day. Because my blood work has been normal my 2 or 3 ER visits is has been very frustrating. I just had a colonoscopy and the GI mentioned the Sphintcer of Oddi muscle. I am scheduled for a visit on Tues to discuss more tests. Hopefully, I am on the way to some help.
I hope you get some answers on Tuesday. I know exactly what you are going through. Let me know what you find out!!
I am a 24 year old female who had her gallbladder removed 1/1/11 and as soon as I woke up from surgery my RUQ pain was severely worse. I was in and out of the hospital since then with clueless doctors, finally leading to one doctor who thought I had sphincter of oddi and perforned an ERCP. I got acute pancreatitis from the procedure and ended up with a week long hospital stay. I wish I could say this procedure worked for me however it has not. I am now in the process of trying medications, but I am onto my 5th one and nothing has worked so far. I did have abnormalities in my bile duct, that prevented my doctor from cutting my sphincter as much as he would have like to, so that is a possiblity. This disease is life altering, I have lost 20 lbs in since week making me very underweight, I cannot function on a daily basis, pain medications make the pain worse as im sure most of you know. It is a nightmare, and Im sorry anyone else has to go through this. Take care all.