I recently saw a gastroenterologist at Johns Hopkins. The radiology department there reviewed my CT scans and MRCPs from the past four years. These exams were not originally preformed at Hopkins.
The Hopkins radiologists discovered that each imaging showed mild intrahepatic biliary dilation with areas of irregularity and narrowing. They said that this can indicate the presence of primary or inflammatory cholangitis. They said that the dilation has gradually become more prominent but for the past two years it has been minimal and stable.
My gastroenterologist has given me the option of doing a ERCP now or do another MRCP in a year. He said he thinks doing a MRCP in a year is a better choice since the intrahepatic dilation seems to be stable. He said that there are risks associated with ERCP. However, he said it is my choice.
I told him that I would like to consult with a hepatologist to get their input on whether I should do a ERCP. I am in the process of getting an appointment with a hepatologist scheduled.
I am wondering what your experiences with ERCP have been? Have you had any negative consequences from doing one? How has your doctor decided when it is appropriate to do a ERCP?
I would appreciate your input. Thank you!
I found this YouTube video to be helpful in understanding the advantages and disadvantages of both ERCP and MRCP. The doctor giving the presentation says he only does ERCPs for therapeutic purposes.
Thanks for your post and inquiry. I have a few observations that may be helpful. I can only tell you my particular situation of course but I believe they are worth mentioning.
- Most certainly consult with a hepatologist regarding the ERCP. In conjunction with that, if circumstances allow I would ONLY see a hepatologist for PSC related care. I never once saw just a plain old GI or PCP for my PSC care after diagnosis.
- What is your current bilirubin level? If it’s over 4 or 5, you are having increased itching, lower right back pain, RUQ discomfort, it is an indication that there is a blockage that needs attention.
- Those indications always gave me the guidance I needed to pursue intervention by ERCP.
- Make sure the person performing the ERCP is an advanced endoscopist tied with a transplant center, that does this procedure day in and day out, week after week. You do NOT need an inexperienced doctor or ordinary GI that does this on occasion. While this is an invasive procedure, it is a very helpful and necessary one for the ongoing quality of life and care of the PSC patient.
- Although stents cannot always be avoided, I would ask the doctor performing the ERCP to only use a stent if it was absolutely needed. They are breeding grounds for serious infections. While they do keep the duct open for awhile, they will eventually clog up and if not removed on a timely schedule (4-6 weeks) can cause serious problems that might lead to hospitalization from cholongitis or pancreatitis, infections, etc.
- ERCP is an excellent tool in the management of PSC related care, but I cannot emphasize enough that it needs to be performed by a skilled doctor that’s familiar with PSC, etc. Once you get one you like, I’d ask for the same doctor each time. Over time they will become very familiar with your bile ducts and will be most qualified to know what to look for since they have seen your bile ducts before.
I hope this helps.
PSC 2011 / Liver Transplant 2015
From my recent visit to Vanderbilt, and discussion with the liver specialists there, for patients with PSC, they only do ERCP in an absolutely necessary situation. This is due to the possibility of infection following the ERCP.
Following up Mark’s comment regarding stents, many centers now advocate taking the stent out between 2-4 weeks, to reduce the possibility of infection.
I had an ERCP in June, with a stent placed which ended up being occluded and infected. It took me about four months of fighting the cholangitis to finally get it cleared out of my liver. A 2 week stent placement would have avoided that.
Thanks for the update on stent placement. I advocate no stent at all, in fact my doctor refused to do a stent unless that was the absolute last option he had. In fact, I remember one time when he told me to come back for a second ERCP after he had difficulty with one of my ducts but the second time back was a charm. He was so fearful of infections with liver disease patients and I appreciate his caution. I do acknowledge from what I’ve learned here from other patients like myself, that there are some times that the stent is needed. I’m sure it varies from doctor to doctor though. Glad though that your doctor narrowed it down to even 2 weeks now. Makes a lot of sense.
In my experience, except for the first ercp, all the subsequent ones I had were to clear a blocked bile duct that was causing cholangitis, jaundice, fever…
If you are not having jaundice, or fever greater than 101, I would not think an ercp would be needed. That said, it is a great diagnostic. tool that can cause some bad side effects.
So if you have one, make sure the doc who performs it is skilled and experienced.
We are still in the beginning stages if diagnosisis- and the last PSC specialist suggested my son needed an ERCP to rule out cancer- non of his numbers look like it- the MRCP looked fine except a 3" stricture in one bile duct- is the ERCP really necessary/ only way to determine if he has cancer?
We are still trying to find s specialist- can anyone recommend someone in the NY/NJ area?
If he has a 3" stricture in one bile duct, he most certainly needs an ERCP to clear that stricture. Yes, they do do brushings looking for cancer sometimes during an ERCP, but that is not the main purpose for the procedure in the PSC patient. It’s clearing those strictures to allow bile to flow. If they can clear it up, he will feel much better. Just make sure the procedure is at the request of his hepatologist. I’ll be glad to research a good hepatologist for you in that area if you will give me the major city you are nearest to. Thanks.
I did a little research in the area you live. A good starting point might be the New York Presbyterian Hospital. They appear to have a strong liver transplant program there, which means they will have some excellent hepatologists. Here’s the link for their liver transplant section to get more information.
Here’s a link for some hepatologists in the area as well to use as a starting point. Hope this helps.
Thank you Mark! We have an appt. with Dr Brown in January.
Jon Brooks here again with more questions, this time regarding ERCP. I have been on Cipro, which has worked, pretty much since early September fighting cholangitis and have had a fever of over 101 degrees, itching, and some jaundice, at least that’s what my wife and I thought, so I forwarded these symptoms to my hepatologist at UAB, Dr. Brendan McGuire, and now I am set up to do an ERCP in early January at UAB. My wife helped me understand all of the risks, especially with the stents, and I have spoken to Dr. McGuire about just doing the balloon, if possible. I’m curious as to how long this procedure will help with the drainage of bile and how long it might allow me to avoid further complications. Diagnosed in 2016, my disease seems to have picked up the pace of development, but I don’t want to make a mistake and have something happen, e.g., pancreatitis, that will worsen my overall health situation. I am in the process of trying to set up an appointment with the Mayo Clinic in Jacksonville, FL, wanting to see Dr. Harnois there, to get a feel for what another hospital/transplant center might do. The doctor at UAB who would do the ERCP did his fellowship with the procedure at that clinic. (He’s board certified in gastroenterology and internal medicine.) Thanks! Jon
Good to hear from you again. I trust you and your family had a blessed Thanksgiving Day yesterday. From what you describe an ERCP will probably be beneficial to you. I’m glad you are asking for the balloon dilation avoiding stents unless there’s no other option. As far as how long it might allow you to avoid further complications, it all depends on the progression of the disease. The first time I had an ERCP done after diagnosis, it lasted for 1-1/2 years before I really had many problems. After that though I had one yearly for two years and then the last year twice which then led up to transplant. There will come a day that the damage has gone so far up into the small micro ducts of the actual liver that they cannot go any higher up. Now, all patients are very different. I know of patients who have had this procedure dozens of times for multi-years so you’ll just have to wait and see.
I may have stated this to you before but I can’t stress enough the importance of making sure the person performing this procedure is a specialist in advanced endoscopy and that he or she does ERCP’s on a daily basis, not an occasional one. Don’t let some new doctor/resident, etc. do this procedure on you. You want the very best person associated with your transplant centers that does these procedures to go inside of you. Then when you do that, stick with that same doctor each time. It’s like a good mechanic, over time he learns a lot about the little details of your car, the same is with your bile duct system. He’ll know each time he does one just how much he can push the limits. The more skilled the doctor the lower the risk for pancreatitis also.
I hope everything goes well. One final piece of advice, after the procedure and your on your way home, don’t make the mistake I did and ask your wife to stop at Cook Out for a milk shake. Oh my, did I lose it all before we got home with all that bumping. Just stick to saltines, ginger ale or anything very light on your stomach for the first 12-24 hours post procedure. They pump your stomach afterwards, but there’s still blood that will drain out into your stomach, you will probably throw up a couple of times nice black looking stuff, but then you should start feeling better
Take care, and don’t hesitate to ask anything else that comes to mind!
Jon, the times I have had an ERCP was due to a blocked bile duct. This caused the cholangitis, itching(worse than “normal”), jaundice.
So you question of when should a person get an ERCP, whenever you have these, or similar, symptoms, it would be a good idea. The advice Mark gave is good-you do not want a novice.But with any invasive procedure, there are risks-some worse than others.
As far as recovery, a nap or two during the rest of the day helped, as did a bowl of ice cream-Mark, I had no problems here! Your throat will be sore the rest of the day.
With stents, they are temporary, and need to come out in a month or two through another ERCP.