Hi, my husband was diagnosed with psc 9 months ago, with significant inflammation suspicious for cancer. He’s had 4 ercps and stent replacements since. However since April his uc has been flaring, 2 courses of steroids have only led to immediate slight improvement improvement, once stopped the uc gets worse. He’s lost a lot of weight and won’t actually tell me what he weighs now in case I worry 
…does anyone have similar story or advice please.
Sorry to hear of your husband’s condition. I’m sure its more than stressful for both of you. 4 ERCPs within 9 months seems a lot. What was the reason for them? Is he currently seeing a heptologist who works with a transplant center? Its important to make sure he’s not just seeing a local gastroenterologist, or even a local heptologist. Try to find someone with experience with PSC. That can make a large difference in the care given.
Steven
Hi so sorry you both are going thru this issue. My husband was diagnosed in 2012, he had ercp ‘s to open up and clean out his bile duct and he would feel better for awhile yet he suffered from severe fatigue.
UNC Dr’s on his last ercp put stents in and said the stents could only stay in for 6 weeks because the stents risk infection, we flew back to North Carolina six weeks later and when they took two stents out they saw a material in bile duct and biopsy showed it was cancer. They did not take the other stent out but advised us to go to Minnesota for possible liver transplant!
We were referred to Mayo Clinic in Minnesota, we live in Florida.
We spent a week of testing to see if he would be a candidate for liver transplant.
As it turned out my husband had a tumor on his liver and needed to come out, he did not need transplant, he had the surgery and our Doctor at Mayo got the tumor out and margins were good thankful to have one of the best surgeons at the best hospital in the world!
We would highly recommend Mayo Clinic in Minnesota they are very experienced with PSC and liver transplants for people with this disease.
We cannot say enough about Dr Nagorney in Minnesota and his team.
Please consider talking to Mayo Clinic in Minnesota they are truly the experts!
My husband has never felt better after this surgery, no more fatigue feeling 100% better!
Feel free to contact us if you have any questions,
God Bless
Linda
Wife of PSC patient
Thank you both for replying. The reason for the ercps was that lfts were elevated and scan suggested common bile duct blockage. In my innocence I thought it might be gallstones but the first ercp diagnosed psc and significant stricture in common bile duct hence the first stent. Because the stents can’t stay put for long they have to be replaced regularly. The last time the stent had migrated to the duodenum and the rummaging around to find it caused pancreatitis.
The brushings done each.time showed atypical c4 and c3 so they have to keep monitoring it.
His nurse said if it was anywhere else in the body it would be removed now but because some ducts are also damaged in the liver they must keep him strong until c5 is found and then there may be something possible. I’m so worried though as how can I keep him strong when his uc is not good now and if its left too long and is a definite cancer wouldnt the chances of it spreading be greater the longer its left.
I’m so sorry that you’re walking this path. Even though I have PCS, I’ve been in the spouse/caregiver position too. My husband had cancer a few years ago and then had some severe complications from his chemo. I sincerely think it is easier to be the patient than the caregiver/loved one!
That being said, would your husband consider Linda’s suggestion of, at least, a second opinion at Mayo in Minnesota? Or anywhere? I had planned to go to Mayo, but was referred to Washington University and Barnes Jewish in St. Louis by both my local GI and an oncologist friend. They’re quite good also.
But here’s my other suggestion: Consider a liscensed and certified nutritionist! Barnes has me working with a certified dietician/nutritionist. She works hand in hand with my doctor there and has been an amazing help in managing my energy and overall health!
Hang in there. You’re in a very tough spot…but you are not there alone.
Best!
Marian[quote=“Worriedwife, post:1, topic:2627, full:true”]
Hi, my husband was diagnosed with psc 9 months ago, with significant inflammation suspicious for cancer. He’s had 4 ercps and stent replacements since. However since April his uc has been flaring, 2 courses of steroids have only led to immediate slight improvement improvement, once stopped the uc gets worse. He’s lost a lot of weight and won’t actually tell me what he weighs now in case I worry …does anyone have similar story or advice please.
[/quote]
Dear Worriedwife,
I would encourage you to ask the doctor if he can just do a balloon dilation, clear the strictures but NOT insert any stents. I had 5 ERCP’s in 4 years before transplant and never once would the doctor put one in. They are just a breading ground for infection. It’s worth asking. I know that we are all different and the doctor may have had a valid reason for them, but there are so many other potential risks like your husband has experienced that may not be necessary to have to go through. Ask the doctor if he puts in stents by practice or if he can give you a good enough medical reason that they have to be there.
Mark
PSC 2011 / Liver Transplant 2015
Thank you all for the replies. He does attend the transplant centre here in Ireland which really is our only option. I will ask about the balloon dilation, as far as I know its because the inflammation in the common bile duct is quite bad but I can’t be certain of that. Apart from the severe fatigue he doesn’t have many other symptoms of psc at the minute. The main problems are the active uc and feeling full quickly. It’s tough but you have to keep plugging away at life!