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@frances007

2 years ago I was diagnosed with a dilation of my main liver bile duct. My doctors chose a "wait and see" approach. About 6 months ago another CT scan was done, showing dilation of my pancreatic duct. My gastroenterologist did not want to perform ECRP because of the risks involved. I have undergone many diagnostic tests. I recently had surgery to remove and replace an Interstim device that will now allow me to have the MCRP which is being scheduled. I have lost 19 pounds since March 2022. I have challenged my doctor on his approach, but this only angered him. Naturally I am concerned about the weight loss, upper abdominal pain and nausea for which I take Phenergan on a daily basis. I have had so many diagnostic tests that I have lost count. I remain hopeful that the MCRP will give the doctor the answers he needs to approach my problem. I am not jaundiced and my liver enzyme values are normal, but I know that sometimes this is possible. Has anyone had a similar experience?

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Replies to "2 years ago I was diagnosed with a dilation of my main liver bile duct. My..."

@frances007 - May I ask what symptoms you had leading to the diagnosis of dilated bile duct 2 years ago?
It sounds as if you suffer from a lot of pain- of course you want to know what’s going on!
Having an MRCP sounds like a good start. I just don’t understand how your doctor could get angry at you want answers.
If you don’t feel comfortable with your doctor it might be a good idea to get a second opinion as soon as possible. Try to find a doctor at a university medical center.
You don’t want to waste time now- please let us know about your testing!

Thank you for asking. 2 years ago I began complaining of upper abdominal pain and loss of appetite that had been ongoing for about 8 months. I also mentioned to him that I had a lot of itching, which my doctor thought was a reaction to the Bentyl I take for IBS. My PCP dismissed my complaints and said it was acid reflux. During COVID-19 I went to urgent care for a COVID-19 test and mentioned to the physician the upper ab pain. By the grace of god, he ordered an ultrasound that revealed a dilated liver duct. My PCP called and said he had good news and bad news. The findings were not good, but they were going to monitor my problem. During the past 2 years I have had so many diagnostic tests that I have lost count. The most recent ultrasound revealed dilation of both my liver and pancreatic duct, which in my mind tells me the problem is not getting any better. My gastroenterologist discussed scoping with me, reminding me there was a 50% success rate and that the MCRP would be the best way to determine what was going on. He said he could not rule out a mass, even though I have had 2 CT scans. As I have mentioned, I have an interstim device to help me urinate; in order to have the MRI I had surgery a week ago to remove and replace this device with one that will now allow the MRI which is being scheduled. I take Norco for pain and that helps. I recently tapered off Methadone because the gastroenterologist said there was a correlation between opiates and dilation of bile/pancreatic ducts. I suffer from chronic pain as a result of a very bad car accident 9 years ago. I have been on opiates a very long time, starting with fentynal patches, and then changing to methadone because of the Medicare "donut hole." I recently found a doctor in San Francisco who is doing a study related to my condition, and asked my PCP for a referral, which I will secure. It has been a slow, painful and frustrating process. I asked my PCP for a referral to a different gastoenterologist, but he would not give me one. I recently changed to a new PCP and will obtain a referral to a new doctor as I want a fresh set of eyes to look at my condition. While I have always been on the low side as far as weight, having lost over 15 pounds since March of this year concerns me. I have no appetite, take phenergan for frequent nausea and now beginning to feel much weaker than I have ever felt. I am very active, but now seem to be slowing down. My PCP mentioned to me a few days ago that I had a low red blood cell count, but did not want me to take an iron supplement, contradicting what the stomach doctor suggested. In any event, I will move forward with the testing and obtain new referrals etc. I thank you for your concern. I recently exchanged messages with my OB/GYN who said she wished that doctors could go back to "slow medicine" focusing more on the individual, as that is what patients want. I do not see that happening at Sutter Medical Foundation where I have been a patient for over 30 years.