ERCP

[rosiirose]

On reading the comments on ERCP, I see that I have no symptoms at all, not physically. My problem is that I have metastatic breast cancer to the bone. Howwever, my cea test is up and my alkaline phosphate is also up for me, yet on the high end of normal. Also, and probably most importantly , my bile ducts are all dilated, especially the common bile duct that runs from the liver/pancreas intoo the duodenum. I had a test that showed my sphincter muscle is in spasm, the one just past the entry into the duodenum. Apparently, this is the cause of the dilated bile ducts, or there could also be a small cancer. I guess the only way to find out for sure is to do the ERCP 1) see if there is cancer or 2) cut the sphincter so that the bile won't back up and cause the ducts to dilate, thus stop the liver damage. My question is: If the sphincter is cut, and more bile will inevitably and continuously flow from the common bile duct (coming out of the liver/pancreas) into the duodenum, what, if any problems can result from that. I don't want to have this done, but don't see anyway I can get out of this. Also, these dilated ducts can cause liver problems and probably have already have and this could be a real problem as it gets worse. Also if there is cancer growing there, we might be able to catch it soon enough to do something about it. It is quite a predicament and I kind of know what I probably should do, but I guess I'm just wondering if anyone has had any similar problems. Also, if anyone can share what I might expect if I have this procedure. Remember, I have no symptoms as of yet, but all the while I could be acquiring liver damage or have cancer growing, neither yet bad enough to cause symptoms. I wonder if I will be worse off. The whole thing is a bit of a quandry for me. In a way, I don't think I have enough info yet.  

I would be most appreciative of any information anyone can share on this and any thoughts as well. Thanks aheaad of time and all the best to everyone and good luck with all of your tests and diseases. May you have the best outcome possible. It seems we all have health issues that we would rather not have.  

Thank you so much. I am just exploring so anything you have to say will be good.    Rosiirose

[ohiogirl]

Wow...you most certainly have a lot going on.  I wish you the best of luck with your breast cancer and treatment.  I can comment on the ERCP questions - it sounds like your doc suspects that you have Sphincter of Oddi Dysfunction and they are talking about doing an ERCP with manometry (to measure the pressure of that muscle) and a sphincterotomy which is the cutting to relieve the pressure.  They will also likely place a stent or stents in there to keep it open temporarily and those are supposed to fall out on their own within a couple of weeks of the ERCP.

SOD is not cancer, it's another animal altogether.  What are your docs telling you about ERCP?  I can tell you that its a risky procedure, I have not had one yet, but came very close a year ago and was able to get my SOD under "control" with meds.  ERCP can help, its not a permanent fix or very rarely is permanent.  I have only known of one person who has had long term relief from ERCP and sphincterotomy, and I know a lot of people with SOD.

ERCP can also lead to any form of pancreatitis from acute to chronic, even after only one procedure.  PLEASE discuss these risks iwth your doctor before you have your ERCP.

If you don't mind me asking, where are you having your procedure done?  Also, have you ever had your gall bladder removed?  SOD occurs most often in people (mostly women) who have had their GB removed and that muscle is spasming and causing a back up of bile in the common bile duct where normally it woud deposit into the GB.

I hope I'm not scaring you.  I really, really don't mean to scare you but ERCP is nothing to take lightly, and there are WAY too many doctors out there who feel that it's not a big deal, dont' discuss the risks with their patients, and you could be left with a lot of different and lifelong problems after the procedure.  And, again you could not, but the risks are high...have they tested your blood for elevated pancreatic enzymes and abnormal liver levels?  Sometimes these tests can indicate SOD w/o ERCP and give teh docs a better idea of what they are dealing with.

Please keep in touch - again, I hope I didn't scare you but I feel so strongly about ERCP and very passionate for people who can easily fall into the wrong hands and get pretty messed up.

Good luck!  Keep us posted...

[Jessie611]

My GI suspects that I have SOD.  At this time, consider yourself lucky that if this is the cause of your issues that you don't have any of the symptoms.  I have had symptoms for the last year and a half intermittently.  They include intense abdonminal pain, intense lower back pain, and vomitting due to the pain.  I have taken numerous trips to the ER and have had to carry prescribed narcotics everywhere I go because I never know when the pain will come.  How did they determine that your ducts were dilated?  I have had a CT, MRCP, MRI of my bililary tract, liver, kidneys, you name it, and were not able to detemine that my ducts were dilated or that there was even anything suspicious going on in my bililary tract.  I was recently referred from my current GI specialist to one in the same group that specializes in the ERCP w/manometry.  From what my former GI told me, this test is very invasive and does come with risks which is why it is one of the last tests they recommend even with my liver enzymes testing in the 200s and 700s at times.  My gall bladder was removed five years ago and my symptoms and history seem to fit the suspicions of SOD.  I too am very concerned with the risks of the test.  This type of ERCP is very specialized so be sure to ask the doctor how often and for how long he/she has been performing these tests.  However, from what I understand the side effects of not having the problem fixed are just as great as the risks in having the test.  

[rosiirose]

Greetings to you both and thank you so very much for your responses. I ended up having the ERCP because as I think we all agreed, not having it can cause more problems thatn having it. I hate to make decisions like that, taking the lesser(hopefully) of two evils. However I was lucky. I did have an excellent doctor and he has done thousands of these. I think he may have done a fellowship somewhere along the way. I don't think I mentioned it, but I previously had had an EUC which is slightly less invasive and uses ultrasound. I'm not totally sure of the difference, but I do know that the EUC can really get a good look at the pnacreas and that procedure was done at UCSF by Dr. Chris Mathy. He is extremely highly regarded and has done huge numbers of this one procedure. It was Dr. Mathy that thought I may have the Sphincter of Oddi problem and recommended that if my bile ducts continued to dilate (in my case, all ducts, inter & intra hepatic ducts) that I should have an ERCP to possibly cut the sphincter and/or see if there is any cancer, specifically in some lymph nodes in the area that are difficult, if not impossible to visualize any other way. The dilation was found on a CAT scan, using thin slices. As far as I have heard, the norm is somewhere around 6mm  for the common bille duct - mine was 9mm and went up to 13mm in a little over two months. I did have back pain, but I didn't connect it to that, but I'm thinking now that it was. I was also having a feeling of fullness even sometimes after only eating a few bites, so I wasn't eating much at all. But, despite not eating much, I actually managed to gain 7-8 pounds.
Anyway, I wanted to let you know that as far as I can tell I did very well with the procedure, and have lost the feeling of being full, or bloated most of the time. My doctor did cut the sphincter and took some brushings to send to the lab, but saw no visible signs of cancer. I do have my gall bladder, but I was wondering what I might look for as far as having more bile entering my intestines now. It would seem that I would have better digestion, especially of fats, since bile digest fats. In the past, I have severly limited fats because I haven't tolerated them well except in very small amounts. So far though, I feel better and it's nice not to have that bloated, full feeling all of the time. If you have any other questions, just ask. I'm not sure if I answered all of them, but I tried. Please take care of yourselves and "ohiogirl" if it so happens that you really have to have an ERCP, maybe you will get lucky and actually feel better like I do. Thanks for your information and support.                Most Sincerely,   rosierose