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Has anyone had an enlarged bile duct as large as 1.1?

Digestive Health | Last Active: Aug 17 6:04pm | Replies (18)

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@frances007

in reply to @lauramazhari Oh no! I am so sorry about your experience. I have not had any stents and my gastroenterologist does not recommend the ECRP because of the risks involved in the procedure(s), many of which you described. Once he informed me that I could end up with chronic pancreatitis, I agreed that I did not want to have the procedure. For me, the risks outweighed any potential benefit, and I am sorry you have wound up with so many issues, that were probably "unintended." The endoscopy I am having will include "regular" biopsies, but nothing like you have described. If you want to have the IgG4-RD testing, you might be better off asking for a referral to a hematologist. Or in the alternative, see a liver specialist. I saw one initially to discuss the findings related to the dilation of my bile ducts, and she was the doctor who ordered all of the labs which led to my diagnosis of immune deficiency. Your gastro doctor probably has no clue what the test means because these tests are designed to detect autoimmune and immune disorders. Can you get a referral to a hematologist? This might be to you benefit. My hepatologist explained to me that the dilation of my bile ducts was not as much of a concern to her, thus no invasive treatment. And since she was of the opinion that I did not have "liver disease" per se, she "discharged" me. I continue to have MRI's to see if there have been any changes in the dilation and so far there have not been any significant changes in the dilation of my liver and pancreatic ducts. Also, the hematologist might be able to order additional labs which might lend themselves to a proper diagnosis. Admittedly, I have a lot of specialists, and trying to get answers is futile. However, I think a referral to a specialist who knows more about the test you are asking for might be of benefit to you. Continue to advocate for yourself, as it is the only way you will ever get the treatment you so well deserve. It's not easy, but in today's world, one really does have to master self advocacy. Best of luck and keep me updated.

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Replies to "in reply to @lauramazhari Oh no! I am so sorry about your experience. I have not..."

I definitely will make another appt with my oncologist/hematologist. He is concerned that there is cancer somewhere. My GI doctors have not done any biopsies. What do you have biopsied? Is it your pancreas and liver or the bile duct itself?
Here is a little more background. My first symptoms before I even had an ERCP was recurrent pancreatitis and elevated alkaline phosphatase in my liver enzymes. I also started having fatigue, fevers, and abdominal pain. A CT revealed a very dilated bile duct so he went in to do an EUS which turned into an ERCP because my bile duct was completely blocked by stones. I haven't had a gallbladder for 20 years, but for some reason my body continues to make stones that blocks my bile duct. If I didn't have ERCP's to remove the stones they said it would eventually lead to death because everything would back up into my liver.

I will keep trying to advocate for myself. I want auto-immune testing so that it gives me more treatment options!

Thank you for all your advice!