Mine is also dilated at 1.1 as seen in a CT scan. The radiologist proposed follow up with an MRCP. My GI doc thinks it is due to having my gallbladder removed 11 years ago so did not order further testing. However I do have bile reflux and take Colesevelam 2x a day. I try to sleep with head elevated. I also have chronic pancreatitis so often am nauseous and have abdominal pain. It’s so hard to get to the root cause of health issues. Recently I did genetic testing for pancreatitis and told I’m a carrier of the cystic fibrosis gene and likely have atypical or non classic cystic fibrosis. More genetic testing will be done. Someone mentioned rapid unintentional weight loss which I also have experienced and am in the underweight category now. I have tried 2x to get into Mayo in the last couple of years but sadly turned down both times. Best of luck to you in your journey for answers.
Thank you for your response. These comments are incredibly helpful, even if the symptoms vary slightly. It is truly uplifting to know that others are encountering similar challenges and to hear their outcomes and next steps. Thank you once more. Stay positive and encouraged and please keep continue to post when time allows.
I have had 9 ERCP's in the past year and a half due to a recurrent blocked bile duct. The blockages aren't discovered until they get in doing an EUS that turns into an ERCP. I have daily nausea and pain that comes and goes in my upper right abdomen. I've lost 36 pounds since last August without trying. I now have a steel stent that was helping. So far the doctors I've seen don't know why this is happening. I'm trying to get a referral to Mayo. Have any of you experienced something similar?
I have had 9 ERCP's in the past year and a half due to a recurrent blocked bile duct. The blockages aren't discovered until they get in doing an EUS that turns into an ERCP. I have daily nausea and pain that comes and goes in my upper right abdomen. I've lost 36 pounds since last August without trying. I now have a steel stent that was helping. So far the doctors I've seen don't know why this is happening. I'm trying to get a referral to Mayo. Have any of you experienced something similar?
in reply to @lauramazhari Wow, that is a lot of diagnostic testing! I'm sorry, but can also relate to the undesired weight loss, as I have lost 31 pounds in the past 2 years, and trying to gain it back is useless. I take phenergan for the nausea, as the zofran causes headaches. While my hepatologist attributes some of the problems to using opiates for chronic pain, the problem can also be caused by an autoimmune disorder. Has this been discussed with you? I have the same symptoms as you have described, thus the upcoming endoscopy in a month or so. I wish I had something better to say to you, but just know that you are not alone. Easier said than done...best of luck
in reply to @lauramazhari Wow, that is a lot of diagnostic testing! I'm sorry, but can also relate to the undesired weight loss, as I have lost 31 pounds in the past 2 years, and trying to gain it back is useless. I take phenergan for the nausea, as the zofran causes headaches. While my hepatologist attributes some of the problems to using opiates for chronic pain, the problem can also be caused by an autoimmune disorder. Has this been discussed with you? I have the same symptoms as you have described, thus the upcoming endoscopy in a month or so. I wish I had something better to say to you, but just know that you are not alone. Easier said than done...best of luck
I appreciate you responding to me so much! I have been feeling very alone. Have you also had chronic bile duct blockages? I haven't found anyone who is going through this! I tried to get my GI doctor to test for an IgG4-RD but he wouldn't. He said that I will just need an ERCP every 4-5 months to replace the stents for the rest of my life. Or, if I develop pancreatitis or elevated liver enzymes then they'll do an ERCP sooner than 4 months. My last hospital stay 2 months ago was for 9 days. I had 3 ERCP's during that one stay. Do you also have a stent? Sorry for all the questions!!
I appreciate you responding to me so much! I have been feeling very alone. Have you also had chronic bile duct blockages? I haven't found anyone who is going through this! I tried to get my GI doctor to test for an IgG4-RD but he wouldn't. He said that I will just need an ERCP every 4-5 months to replace the stents for the rest of my life. Or, if I develop pancreatitis or elevated liver enzymes then they'll do an ERCP sooner than 4 months. My last hospital stay 2 months ago was for 9 days. I had 3 ERCP's during that one stay. Do you also have a stent? Sorry for all the questions!!
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.
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.
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!
in reply to @lauramazhari I've been thinking about you all afternoon, as I feel so bad for you having to suffer so much. I can't even imagine what you have been through with all of the ECRP's, stents and ongoing bile duct issues. Truth be told, I have so many issues going on at once, that it is difficult to separate them all out. I have to have the endoscopy in an effort to explore a sphincter of odi dysfunction(like I really want to understand what this is. I don't "google" much anymore); I have to have the colonoscopy, which will be done at the same time, so that a biopsy of my colon can be done (again) as I have ulcerative colitis. Great idea to see the other specialists so that more in depth testing can be done to determine if any of your issues are related to autoimmune disorders. If your doctor suspects cancer, they did not take any biopsies during the ECRP? Because of the type of immune deficiency I have, there is an increased concern that I will develop leukemia, which killed my father. I am not worried, really. I have chronic anemia and am malnourished because I have zero appetite. Do you have this problem as well? The hematologist suggested appetite stimulants, but I declined. At this point in my life, all I want is to have a quality of life over having the ongoing IVIG , which will never cure my immune deficiency disease. It is impossible to describe how poorly I am doing with the IVIG, and I am told it is because of all the weight loss. In any case, please keep me updated on your progress. It's not easy these days trying to get answers, and I hope you don't have to wait too long to get the testing done. If they send you to a rheumatologist for autoimmune testing, please do not be thrown off if the test results come back "normal," as a normal test does not always mean that you do not have an autoimmune disorder. I am curious what autoimmune condition you think you have. I have Raynauds and Sjogrens, and both tests for these came back "normal," but I have all the symptoms of both. Best of luck!!
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Thank you so much. I am sorry you are still dealing with pain.
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Thank you for your response. These comments are incredibly helpful, even if the symptoms vary slightly. It is truly uplifting to know that others are encountering similar challenges and to hear their outcomes and next steps. Thank you once more. Stay positive and encouraged and please keep continue to post when time allows.
An Rx of Zofran (ondansetron is the generic) has really helped me when nausea hits. Maybe you can get that through your Gi doc(?)
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2 Reactionsin reply to @lauramazhari Wow, that is a lot of diagnostic testing! I'm sorry, but can also relate to the undesired weight loss, as I have lost 31 pounds in the past 2 years, and trying to gain it back is useless. I take phenergan for the nausea, as the zofran causes headaches. While my hepatologist attributes some of the problems to using opiates for chronic pain, the problem can also be caused by an autoimmune disorder. Has this been discussed with you? I have the same symptoms as you have described, thus the upcoming endoscopy in a month or so. I wish I had something better to say to you, but just know that you are not alone. Easier said than done...best of luck
I appreciate you responding to me so much! I have been feeling very alone. Have you also had chronic bile duct blockages? I haven't found anyone who is going through this! I tried to get my GI doctor to test for an IgG4-RD but he wouldn't. He said that I will just need an ERCP every 4-5 months to replace the stents for the rest of my life. Or, if I develop pancreatitis or elevated liver enzymes then they'll do an ERCP sooner than 4 months. My last hospital stay 2 months ago was for 9 days. I had 3 ERCP's during that one stay. Do you also have a stent? Sorry for all the questions!!
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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1 ReactionI 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!
in reply to @lauramazhari I've been thinking about you all afternoon, as I feel so bad for you having to suffer so much. I can't even imagine what you have been through with all of the ECRP's, stents and ongoing bile duct issues. Truth be told, I have so many issues going on at once, that it is difficult to separate them all out. I have to have the endoscopy in an effort to explore a sphincter of odi dysfunction(like I really want to understand what this is. I don't "google" much anymore); I have to have the colonoscopy, which will be done at the same time, so that a biopsy of my colon can be done (again) as I have ulcerative colitis. Great idea to see the other specialists so that more in depth testing can be done to determine if any of your issues are related to autoimmune disorders. If your doctor suspects cancer, they did not take any biopsies during the ECRP? Because of the type of immune deficiency I have, there is an increased concern that I will develop leukemia, which killed my father. I am not worried, really. I have chronic anemia and am malnourished because I have zero appetite. Do you have this problem as well? The hematologist suggested appetite stimulants, but I declined. At this point in my life, all I want is to have a quality of life over having the ongoing IVIG , which will never cure my immune deficiency disease. It is impossible to describe how poorly I am doing with the IVIG, and I am told it is because of all the weight loss. In any case, please keep me updated on your progress. It's not easy these days trying to get answers, and I hope you don't have to wait too long to get the testing done. If they send you to a rheumatologist for autoimmune testing, please do not be thrown off if the test results come back "normal," as a normal test does not always mean that you do not have an autoimmune disorder. I am curious what autoimmune condition you think you have. I have Raynauds and Sjogrens, and both tests for these came back "normal," but I have all the symptoms of both. Best of luck!!