Have they done any tests? (CT scan, ultrasound, or anything like that) and have they checked your blood (liver enzymes, lipase, amylase, bilirubin etc.) ??
I am sorry to hear you are in so much pain, it is never fun to have a doctor think you are making it up! I have been there too but, they just did an MRCP and found that it is a stricture in my bile duct and I am going to get an ERCP done and hopefully this can be fixed. I was told it was IBS, and I know I have that too but this is not IBS, and I was told by my doctor to "just get used to it because millions of Americans are living and functioning with IBS, and I just had to learn to deal with it." Well, I got a new Doctor after that comment. I have been living with IBS since I was 17, mine is chronic constipation and raisin bran works wonders and I deal with it just fine. I know from school that there are people who do have psychosomatic illnesses, but there have been three times in my life I was told it was "in my head" and I have now proven them wrong three times. From this point on I will not even entertain the idea that I have it in my head and not my body, pain is a warning sign and I am listening. Let me know how things turn out for you.
Hi have you received your results? I am experiencinh the same problems and my docor cannot seem to figure it out.
Please let me know if they have figured it out for you.
Hi, I am AGAIN repeating my post to another user . Sounds like the same thing. iT could possibly be sphincter of oddi dysfunction . You can google john hopkins sphincter of oddi for more info. I have this and it was hard getting diagnosed. My GI dismissed me as well said ibs. I finally went to er one night with a bad attack of pain they gave me dilaudid and it made it worse. They again sent me home and I went right back because I kept throwing up. They tested my liver levels and it was 10X normal. MY GI then had to admit something was wrong and he referred me out to DR Cotton at MUSC in SC.
Have your liver levels ever been checked during an attack? Do narcotics make the pain worse? Narcotics typically invoke the pain of these attacks in most with this problem because they raise pressure in the sphincter. There are 3 types of sphincter of oddi so just because you do not have elevated liver enzymes during attacks it does not mean you do not have it. Type 3 is just pain only. Unfortunately this is the most difficult to treat.
Mine typically bothers me when my stomach is empty but others it bothers after they eat. I suggest talking to your dr about this or another dr. and possibly getting a referral to a Dr that specializes in SOD. They know what to look for and are the best. Most GIs will not venture into diagnosing or helping SOD patients. The best Drs are MUSC in SC Dr Peter Cotton, Univ of MN Dr Freeman, and Univ of Indiana Dr Sherman. You can even try to make an appointment directly with them.
The test to check for this is MRCP to look at your ducts and ERCP with manometry to measure the pressure in your sphincter. The ERCP is risky and can cause severe pancreatits which could land you in the hospital months. That is why it is critical you only get this done at a center that specializes in this procedure. If your pressure is high then they can make a cut in your sphincter to relieve the pressure. This helps some. In others it has to keep being repeated. There is no real cure that works 100%. Some people find relief from nitroglycerin, or levisin to help with the spasms . Sone even find a little relief with amitryptiline. These drugs can help a small percentage of people so you could try it first. Sphincter of oddi also sometimes goes along with chronic pancreatitis so they can check out this possibility as well with an EUS procedure. Chronic pancreatitis or SOD do not always show elevated enzyme levels.