Hi all, after 3 years of small duct psc unfortunately I now have strictures throughout the liver and in the common bile duct shown by an mRCP I had last week. My ‘case’ is being reviewed by a hepatology team on Wednesday to look at next steps but my hepatologist told me that in all likelihood I will need a balloon dialation. Does anyone have any information on what I should expect of this procedure?
Hi Rick. Once youve been through it, you should feel much better. Iv had 3/4 ERCP’s. each time one is performed it gets easier when given the right sedation.
My last ERCP about 3/4 months ago was a balloon dilation and then they managed to stent on top of already a stent inserted.
They also trawled and balloon dilated my intrahepatic ducts by open surgery as they had to remove my gall bladder which was heavily inflamed.
The issue i have is from knowing i have PSC to being told just gall bladder needs removing i now have found after the surgery i have early stage cirrhosis. In a way im blessed i am still living but with masses of anxiety…
Now its great surgeons picked this up by open surgery/biopsy the same time as clearing intrahepatic ducts. But ive now come to the point if any further ops are performed then it could possibly hinder a TP i need inevitably in the future.
Ive just visited Birmingham hospital for a PSC open day yesterday. It was brilliant! Still digesting everything said. However im meeting the same consultant next weekend I waited almost 3months for this after referral by my surgeon who cant do more and recommended a possible new liver will be the most effective treatment now.
Hope this helps, your in safe hands.
Sorry to hear that you have developed strictures in your common bile duct now especially with one who has small-duct PSC. As far as the ERCP procedure I would offer a couple of suggestions to consider. I had 5 of them prior to my transplant in 2015.
Make sure the doctor performing the procedure is one that does ERCP’s on a regular basis and not a resident physician still learning the ropes. It is a very invasive but necessary procedure for the PSC patient and needs the expertise of a specialist to perform it. I would ask them if at all possible, to please avoid stents and if they do have to insert stents they will need to be changed out in a few weeks. These are breeding grounds for an infection. The procedure itself should go pretty well. The biggest thing we are hoping to avoid with the experienced doctor doing the ERCP is pancreatitis. You don’t want this if at all possible.
Expect sometime before the end of the evening after you get home to throw up a couple of times. It will be black and awful but you will feel better afterwards. They are doing a lot of scraping and cutting to open up the strictures so this is normal. Also, in the aftermath of the procedure start with light foods such as saltines and ginger ale. I made the bad mistake after my first one to get a milkshake from Cook Out and I lost it before we got home You need to plan on taking the next day possibly to recover as well. After a few days of rest you should feel much better and your itching should subside more as well.
I hope all goes well for you. The very best to you and your family.
PSC 2011 / Liver Transplant 2015
Thanks Panchor2. I was at the info day at QE hospital too! It was a great day with loads of information. I am now wondering how to get on a clinical trial like norurso. How long does it take to do the balloon dilations and do you feel anything? Sorry to hear about all the anxiety you are going through. I know, it’s terrible. I’ve been in psychotherapy for 18 months, which helps a lot with the uncertainty of it all. Are you sure that your surgery would prevent you having a TP. I haven’t heard that before.
Thanks Mark. I will check who is doing the procedure. I attend the Royal Free in London which is usually pretty good with these things so hopefully I will get a seasoned professional doing it. I will talk to them about whether they intend to use stents, or not. Pancreatitis doesn’t sound good.
I have had 4 ERCP’S (3 with stents) I developed pancreatitis with the first (which was hell!) But the other three were a piece of cake. The one that went wrong was with a lesser qualified doc, the 3 good ones were with an expert (Glen Lehman in Indianapolis)–he has trained many of the top ERCP docs on the procedure and using Spyglass, an even more invasive tool the can reach into smaller ducts than a traditional ERCP. it’s been 3 months since my last, but all of blood work is back in the normal range. I basically have a clean bill of health, with the lingering PSC diagnosis. Just have to be a little careful with my diet and go to all of my checkups to make sure Im staying on track! Good luck to you Rick! I’m sharing my story so that others have hope of good outcomes as well!
Glad to hear you are doing well. Would you elaborate a bit more on the Spyglass technology. I don’t recall that ever being mentioned during all my ERCP’s, although I guess they could have used it on me without my knowing at the time. Thanks.
Spyglass is used to get better biopsies from within the ducts, thus enabling testing for cancer etc.
I want to second Mark’s comment about the stent. There are two schools of thought concerning stents. Traditionally they have been left in for several months. The danger here is that they become occluded and a breeding ground for infection. I ended up with cholangitis on and off for 5 months while I had an infection clear out, which was due to an occluded stent. In the recent book “Primary Sclerosing Cholangitis” published by Springer Press, the authors discuss the current trend which is to only have the stents in for 2-4 weeks. If its possible, I’d avoid getting one, if its mandatory, I’d discuss before the procedure how long it would be in.
Rick, I have had several.
It is an invasive procedure that shoves a tube down your throat, past your stomach and hangs a right at your liver.
So you will be out for the 20-30 minute procedure and should be able to go home within 2 hours. You will be sore, maybe a little groggy, sleepy and your throat will be sore. You can take care of that with ice cream and popsicles.
It is a tool that gives docs a wonderful arsenal to get into the liver and surrounding ducts to put in a stent, take a biopsy, image something… But there are some complications that people can get, like pancreatitis.
Your story very similar to my own …all my bloods came back normal and Mrcp scan was clear …so I’ve gone from being diagnosed with psc .with having gallbladder out and stents in and out and I had a procedure where they cut my duct at the start of duct to improve bile flow to now being told I dont have psc …this all took 2 years from start to finish…I very to get bloods done every 6 months but fingers crossed.