Thank you for sharing your abundance of knowledge about this scary disease!!! You seem very well educated on this topic! I’m wondering if you could point me in the right direction as far as educating my family about this disease. I’m looking for something simple to understand for those who don’t a lot of knowledge about the liver. If you’d prefer to private message me I’m ok with that. It’s something that I need to do. My husband and I will sit down with our kids first. They are ages13-19. They are all very intelligent! I’m not bragging but they really are! So they are capable of understanding pretty well. Then we’ll have a family meeting with extended family. Some are well educated on health, others not so much. I don’t think most people believe they’ll ever know someone who will need a liver transplant at some point! I certainly didn’t! I appreciate anything you have to share.
I got your message and will try to get a reply with some info later this evening or tomorrow. It’s a good inquiry so I want to be as thorough as possible.
There are a number of resources to gain more information that you can share with your family. I’ll list a few here. This first one is from the Mayo clinic. When you click on the link it will take you to the first page of introduction, but notice on the left that there are multiple pages to this article that will take you through the experience of PSC and some things to expect. Education is key so this is good that you are sharing with your children. My two girls were 19 and 21 when I was diagnosed and throughout the process my wife and I kept them fully informed at what was happening to me and they both along with my wife were a wonderful support team that helped me through this time. One thing I will mention to you. Don’t go to your hepatologist appointments alone if you can help it. Take your husband with you or one of your children so they can take notes, ask the questions you don’t remember to ask, etc. I would often send out a family email after appointments, MRI’s and procedures and just give everyone an update of what happened, what the findings were and what the prognosis is. I did that my entire time with PSC and through and after my transplant. I set up several email lists in advance and would send updates. You will be pleasantly surprised that the more you share of what’s going on, the more support and words of encouragement will come. And you will be able to bless others yourself along the way as they seek to encourage you.
Here’s a guy discussing PSC. A little boring but informative. https://www.youtube.com/watch?v=yymOjNyE5_o
A brief patients story - https://www.youtube.com/watch?v=k_0OQlLc6hQ
The Faces of PSC - https://www.youtube.com/watch?v=xEadEPW8Prg
Nicole, these are a start for you that hopefully will give some information to your family. I don’t want you to be afraid of the thought of a liver transplant. It is one of the most wonderful things that happened to me and I believe it came at a time that I didn’t have much time left on this earth, but God in His grace spared me for my wife and family. After 1 year and 6 months I’m doing well and feel the best I’ve felt in over 10 years. I may private message you a few photos and some other stuff at some point that you can share with them to show them that you can get better. Take care.
Thank you for all your help! I really appreciate it!!!
An MRCP was done. This is an MRI of the abdominal organs, liver, bile ducts, etc. Make sure they do it with and without contrast. 4) once all that is done and the diagnosis is certain and they know how strictured your ducts are, then they will start a course of treatment that will probably involve Ursodiol which is a drug which thins the bile to make it easier to flow through your damaged bile ducts.
Welcome Nicole and apologies for adding on a bit late to an already welcoming and amazing response from forum members, no matter what course the diagnosis takes with PSC I hope you are convinced that the test results are accurate.
I was diagnosed 10 years ago and had no symptoms except elevated liver enzymes that were picked up through blood tests. A gastroenterologist then performed a biopsy (twice to be sure) and my bilary ducts were indeed, perceptively just beginning to scar. Since then he has tracked the progression of the disease through imaging.
As Mark pointed out the contrast on and contrast off, imaging MRI scans shows the condition of your bile ducts to the gastroenterologist who can make a decision regarding existence and progress of the disease. It is a fool proof method providing evidence related directly to signs of PSC. I have just had my second MRI scan 4 days ago and now wait to discuss with specialist.
The imaging is a simple test, and well worth establishing if you do or don’t have PSC because you are already dealing with a chronic illness.
I wish you much strength and wisdom as you work your way through this new development and I hope the diagnosis whatever that may be opens new, positive pathways of dealing with your symptoms.
Thank you so much for the warm welcome! I need this kind of support!!!
There are very few who really understand how truly sick I am just with the
IBD. I guess my symptoms could also be related to my liver, too. Right now
I’m feeling sad that those around me don’t understand I’m sick! They don’t
understand chronic fatigue. Ugh! I think I may be a bit hypersensitive
I’m having my small bowel resection and liver biopsy Friday. I’m very anxious! I really just want to get it done and over with. Hopefully it will be at least another 8 years before I need another bowel resection.
My prep is so much different from previous surgeries. I’m not complaining though. I have to drink 20 oz of gatarade on the way to the hospital. At least I won’t be combatting dehydration. I think tomorrow will be rough though. I’ll be taking really high doses of two different antibiotics, doing a bowel prep and be on clear liquids so I’m sure to have nausea even with anti nausea meds.
Cant find sleep tonight so I thought I’d check in one last time before I go under the knife. I’ll get back on as soon as possible after surgery.
Good luck, Nicole.
I hope everything went well with your surgery. Been thinking about you! Wishing you a speedy recovery!
Hello! My surgery turned out to be a little more complex than they thought
going in. They did the resection where the stricture was. They also had to
fix the place my last resection was. It wasn’t aligned right so the
beginning of my colon was smaller than the tip of my surgeon’s pinky
finger. He was able to repair it laporscopically! My liver bled more than
it should have and they had a tough time getting it stopped. It’s a good
thing they did it laporscopocally because they would have ended up having
to open me up anyway. The surgeon said the biopsy results should be back
Tuesday, Wednesday or Thursday. I’m a little anxious about them. My urine
has been the color of tea. At first they weren’t concerned because they
figured it was due to dehydration. Since it hasn’t corrected itself they
did a urinalysis. I haven’t heard anything back yet. Thanks for you
thoughts during this time.
I hope everything went well with your surgery. Been thinking about you!
Wishing you a speedy recovery!
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I’m having my small bowel resection and liver biopsy Friday. I’m very
anxious! I really just want to get it done and over with. Hopefully it will
be at least another 8 years before I need another bowel resection. My prep
is so much different from previous surgeries. I’m not complaining though. I
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I’m sorry to hear that your surgery was with difficulties. It sounds like your PSC is progressing from the little description you gave. Have you had labs recently. I do pray that your biopsy comes back ok and that things are not as bad as they may seem right now. One question I don’t know if I’ve asked you before. Are you on the transplant list yet, and if not what is your current MELD score. You don’t want to wait until things get so bad that you are not able to go through the transplant review process as that is pretty intense. Keep in touch with us all and let us know how things come out with your biopsy. We are thinking of you and wish you a very Merry Christmas with your family.
They did a urinalysis today. It turns out I don’t have bilirubin in my urine. I have large amounts of blood. The nurse thinks it may be the start of a UTI. I haven’t heard anything from the on call surgeon. I’ll see my surgeon on the morning. So I’ll know more then.
To answer your other questions I have no idea what my MELD score is. They’ve been doing labs everyday since I’ve been in the hospital. No, I’m not on a transplant waiting list. I’m going to a new GI doctor after this surgery. I’ll talk to him about all of this then. I know he plans on doing an MRCP right away. I’m also going to get some ideas from him where I should go. I think the closest transplant center from me is in Salt Lake City which is eight hours away.
I’ll keep you informed of what I find out as I find them out.
Another test of your flexibility and sense of humor, brought to you by psc.
I like that saying, Dear things that want to kill me, I am strong now, so stop it.
Jeff, Lol!!! Isn’t that the truth! I say bring it on, you don’t know who you’re messing with!!!
Hi Nicole! I hope your biopsy comes back good. That doesn’t sound good about your urine. Are you sure you’re hydrating enough? I hope you have a wonderful Christmas!
Well things are up in the air so to speak. My liver biopsy showed no Biliary disease, just minimal fatty liver. I’m a little excited, but also know that the areas of my liver they took biopsies from may not be effected. I’m also a bit confused since my original diagnosis of PBC was made through a liver biopsy, but later changed to PSC because of several factors. But I’m going to keep my fingers crossed for the next few days. I will be having my first MRCP on Monday. So, here’s my question, are they 100% conclusive? I don’t want to be told I don’t have PSC now but then turn around and find out I really do have it in a few years. I’m feeling a bit uncertain right now, I guess.
I want to know how your doctor is jumping to these conclusions without the benefit of imaging. I’m very concerned that you haven’t received an MRCP up until this point.
For the last 15+ years, MRCP is step one to diagnose suspected PSC. If your ducts show a beaded appearance then you likely have PSC. If your ducts look normal on imaging then things are less conclusive. If you are positive to AMA (Anti Mitochondrial Antibody) and do not have UC/Crohn’s then you likely have PBC. If imaging is normal, AMA is negative, you have UC or Crohn’s, and symptoms/LFTs are suggestive of PSC, then you may have small-duct PSC. A biopsy is sometimes warranted at this point to help find either small duct PSC, PBC, or an overlap condition. As you know, biopsies can be hit or miss as to whether they capture a relevant area. If you are symptomatic they might order a therapeutic ERCP that can often get better pictures than MRCP but, like a biopsy, is invasive.
The MRCP will likely shed a lot of light as to what is going on.
There are arguably two gold standards in diagnosing PSC-an ercp and the mrcp.
The ercp is invasive and could lead to complications like pancreatitis. The mrcp
is, by its nature, non-invasive and without the risks of the ercp.
A biopsy is less common but still has its uses.
I was diagnosed by ercp and have an annual mrcp to see how things are developing and have never had a biopsy.
I hope you get good news.
To answer your question, in my opinion I think the only way to know conclusively is to have an ERCP procedure done. That is the surest way, the doctors in the bile ducts, he’s seeing them in real time, etc. MRCP’s are the step done normally before ERCP, but the endocscopic procedure is the most conclusive way I know of and I would ask for that. That way if you do have PSC he can clean those ducts out and dilate them while he’s in there. Again as said many times on this forum do not let your ordinary home town GI doctor do this ERCP procedure. It takes someone with advanced training and at a hospital that does them every day. It’s very invasive but very effective as well. Good luck.
Nicole, Hopefully once you have your MRCP you’ll have all your answers. That is how they found mine and we were told by the doctor who did it that it is really the only way to diagnose PSC. He even showed my husband and my mother-in-law the image with the beading in my intrahepatic ducts. I would like to see it for myself at some point if only for curiosities sake. I’ll be thinking of you on Monday.