Here we go again

Just a quick informative update for those of you who don't know/remember. Just this past June my husband had a "flare up" of his PSC. His liver enzymes spiked, bilirubin spiked and he was very yellow. He had a stent placed, was removed a month later and we have been "stable" every since.

Well only 6months later we are back at it again. At the end of November he had blood work done for just a "check-up" and they were great. The lowest they have been in a long time. Now they are back up to the highest they have ever been. His bilirubin is even higher and his skin/eyes are yellow once again. His normal GI doc is out until Monday due to the holiday so the one covering wants to do a MRCP. He's not had that before-they've just always done the ERCP and been done with it. We're kind of torn as to whether or not this is even worth it. If they end up needing to do the ERCP to place a stent anyways would we have been better off just to do that in the first place?

Again we are a little freaked out by the whole thing. We just can't believe within a month's time his enzymes can go from being great to the worst they've ever been and he be so yellow again.

So here is some food for thought-questions that I would love to have feedback on:

1-what are the benefits of doing the MRCP if we still end up having to have an ERCP done?

2-Right now we are just going to a GI doc who specializes in ERCP's, ect... but he is not at a big PSC centered hospital nor do we have a liver specialist that we see. With this bout coming on so quickly is it about time we go to a bigger facility and see doctor's that have more training with the liver/psc?

Lisa, with ERCP, there is always a chance that something will go wrong, as it is an invasive procedure.So to get an ERCP taken by someone who does not know PSC well, just to say that you have had another ERCP, does not inspire confidence in me.

My first ERCP, the one used for my diagnosis, was not very well liked by my doc at the transplant center. So I ended up having another one done.

But then an MRCP can not, by definition, be used to put in a stent. But would you want someone putting in a stent who was not familiar with PSC?

Tough call.

Please see a hepatologist and not a gastro. Hepatologist doctor specializes in liver disease. Mrcp will show the size of ur liver and extent of inflammation. It will also show which ducts are blocked to enable the ercp efficiently. Get the mrcp with dye. Some ducts cannot be opened and need to be opened from outside. This will need a diff type of doctor. Without a map of ur ducts they cannot get the procedure done. So I strongly suggest u see a hepatologist. Hope this helps.

An MRCP can give you a baseline to track the progression of the condition of the bile ducts, spleen and liver size/inflammation.

I would definitely want to find a GI or hepatologist that is very familiar with PSC. Not only will you benefit from the expertise but it will help with peace of mind from knowing you are under experienced and knowledgable care. For instance, our hospital has meetings with a GI team of doctors to discuss cases. In my husbands case, they no longer want to do ERCP’s because of the level of constrictions he has. At this point they feel the risks outweigh the benefits… (Bile leaks and pancreatitis have been problems in the past). We feel good that this is not just one doctors opinion. We know they have discussed treatment with a team that has experience with PSC. So, we do the MRCP’s to track changes and just had a fibro scan which showed what stage of cirrhosis he has. If you husband is not having any signs of a cholangitis attack (pain, fever, flu - like symptoms) maybe you have time to find a new team of experienced doctors before you jump into anything. Antibiotic can ward off a cholangitis attack , especially if you catch it early. (I forget what type of antibiotic but a certain kind is preferred for effectiveness on the liver). We keep a prescription on hand all the time, which was suggested by our GI.

The MRCP could be good info to bring with you to the new team. I don’t know if the MRCP machines vary from one place to another though…the new doctors might want to use their equipment so their subsequent comparisons are consistent. Blood test do fluxuate. I have tracked my husbands on a chart for 5 years now and each time he has a cholangitis attack, Thing go more out of range than usual. I believe the results between attacks are more telling as to where your husband is at, although , unfortunately, this disease is so unpredictable, as we all know. There are powders that help to flush out bile build up. My husband takes cholestyramine for itching due to bile build up. Thus it helps with yellowing.

Know that I am sorry for what you are going through. I am currently having a very difficult time with how all this is effecting our lives and fear and worry seem to dominate my thoughts right now after the most recent test results. I am looking for a better perspective and approach to our difficulties. If you would like to have convo with me sometime that is less public, I would like that. We could benefit from the friendship, I think.

By the way, our GI team has a hepatologist on it and the GI doctors vary from specialists that do the surgery (colonoscopys and ERCP’s) , hepatologists that do complicated gall bladder surgery and liver biopsy, and then our regular GI PSC/PBC specialist who consults with the team and from that, directs my husbands care. In our situation I think the GI is fine since she is a specialist. Once you get to the point you are ready for referral for a transplant evaluation, then I believe you will need to see a hepatologist. (Please pipe in anyone if you know differently). We have gotten very good care with our GI. The first one has done extensive research on PSC and PBC.

I have good confidence in my Dr and his attitude is that the ERCP procedure is really only when you know there's a need to intervene. It is invasive, even if they don't put in a stent. There's a fairly high risk of pancreatitis, because the "outlet" for both the bile ducts and the pancreas are at the same spot. I understand that pancreatitis is highly painful. But even setting aside that risk, the (one) ERCP wasn't that easy to recover from. MRCP is just a scan.

I'd agree with the others who have chimed in that if your husband ends up having an ERCP, you want an expert in PSC to do it.

Thank you all for the info/thoughts. It is always good to hear from others. I still feel so clueless, even having started this road 2 years ago now. I suppose it is because it is so unpredictable. Yes Cat Flower I would love to visit with you on a more private basis. Send me a friend request? Would that be the best way?
I do like our current GI guy, but I do think we need to go somewhere that has more experience with PSC. The last ERCP my husband had done was not by his regular doctor either& we were NOT happy about a few things. With him not just maintaining with this disease it is becoming more and more “real”. Would that be the best way to describe it? Like maybe the whole thing wasn’t real before because he wasn’t very sick. Now he’s getting sick & I am so scared. I feel like we don’t know what to do. This just sucks! Want to hear some irony with it all? MY mother was recently diagnosed with bile duct cancer. My HUSBAND is the one with liver disease/high risk of bile duct cancer& my MOTHER gets it. A total slap in the face irony.


Just to underline what others have said above, if you are going to have an MRCP done, definitely make sure the doctor orders it with the dye contrast. Even if the radiologist doesn't normally do it, make them do it anyway. You cannot get the full picture without the dye. They will run scans without the dye and then do the dye at the very end of the MRI study. It isn't a painful procedure, just make sure they blow plenty of cool air in that tube to keep you from getting that closed-in feeling in the MRI machine.

Checking in… How are you and your husband holding up? God bless.

Sorry to hear of your husband’s troubles with PSC. My husband was diagnosed 18 years ago but never had any major issues with it until August of 2014. (You can read my story about it in my introduction to the group) At any rate, his first GI specialist in Rochester, NY moved to North Carolina and wanted his patients transferred to a Colo-Rectal practice, which we were not interested in because none of those doctors were PSC specialists. So my husband opted to switch to a GI doc in the same location as his PCP. This GI is affiliated with the University of Rochester-Strong Memorial Hospital and we’ve been very confident in his ability to care for my husband. When he had his first exacerbation of the PSC, this GI doc was on it immediately (Total Bilirubin had gone up as well as MRI showing severe narrowing of CBD) and referred us to The Hepaologist/Bile duct disease specialist at Strong. There is no way my husband would’ve done any procedure with someone who was not a specialist in Biliary Disease. Do your research and ask questions! Do it quickly, because it sounds like your husband needs very prompt attention. When the enzymes and labs go way up, there is usually significant narrowing going on and an intervention is needed quickly. Good luck and I wish your husband the best. PSC is a difficult disease for everyone involved.

My apologies everyone for just dropping of the face of the earth after my last post. Yes the MRCP showed a significant narrowing & so we were back up to billings a couple of weeks later for an ERCP with stent placement. We go back up in March to have stent removed with a possible placement of a new one. My husband has done well. Blood work was great a couple weeks after the stent placement.

I am now helping take care of my mother who is going to die from bile duct cancer. Not only does it suck to lose my mom, but it terrifies me for my husband.

Lisa, welcome back. I am glad about your hubby, but am sorry to hear about your mom. Hugs are being sent.


Lisa said:

My apologies everyone for just dropping of the face of the earth after my last post. Yes the MRCP showed a significant narrowing & so we were back up to billings a couple of weeks later for an ERCP with stent placement. We go back up in March to have stent removed with a possible placement of a new one. My husband has done well. Blood work was great a couple weeks after the stent placement.

I am now helping take care of my mother who is going to die from bile duct cancer. Not only does it suck to lose my mom, but it terrifies me for my husband.

Thank you for your kind words regarding my mom. She died early Saturday morning with her family by her side. I know it is not a death sentence always, but it is still very scary-hers was so advanced there was just nothing that could be done. She even went to the cancer tx center in phoenix, but it just was not meant to be. I just pray advances continue to be made in treating this disease, and treating cancers in general!