Hi I’m from Australia, after a couple of months of hospital visits and lots of bloods and scopes and biopsies, my son has been diagnosed with small duct PSC. I had looked up PSC along the way and was desperately hoping that it wasn’t this…it wasn’t quite this, as small duct PSC seems to follow a slightly different course however his large ducts are dilated so he may be one of the few who goes on to develop it in the large ducts as well. I can’t stop crying. He has UC as well and is on mezavant but I worry about medication now and the possible effect on his liver. This group’s discussions have been quite a comfort. My son is seeing the local GI but I will look for a hepatologist for him .Feeling quite desolate, I would rather it be me than him. Anyway thanks for providing this forum, such a comfort to hear everyone’s stories.
You have found a good place here…
I’m feeling a little lazy today, so I am going to copy and paste a reply I wrote to a very similar post. I meant every word of it then and again today, as I paste it to you…
I had a very similar diagnosis story as your son. UC in my teens and diagnosed a few years later at the age of 17. As a parent now, I’m 35 with a son and daughter, i can’t imagine what my parents went through. But to be honest the naivety and fearlessness of teenage boys thinking they are invisible to the world is likely shielding your son.
Everyone is different and has different coping mechanism but i thank my family now for never making a big deal of things. Have your routine blood tests and doctor appointments every 6 months or however often it is recommended and then have you son lead a completely normal life.
Your son will likely learn to listen to his body and will be a better judge than anyone whether or not to do something or eat something or go somewhere.
At some point he will have to deal with it, hopefully decades from now, but dealing with it is not insurmountable, it is an opportunity. An opportunity to write a triumphant chapter in his life.
Just my two cents, 20 years post diagnosis, with a happy wife, house, dog and two terribly behaved toddlers.”
Thanks Eric, yes it’s amazing how similar everyone’s story is in a way but yet they are all unique as well. It’s a scary diagnosis but sometimes these things affirm our will to live and engage with the world and I am seeing that in my son. I’m feeling lazy today too, so I’ll just say thanks for your reply.
The words from Eric here are echo’d by me. Everyone deals with this strange disease in their own way not least because it affects everyone differently to a great extent - there’s no ‘normal’ with this. And then there is how it affects family members. I am so sorry to hear of your son’s diagnosis. Of course you will want to read up as much as you can on psc, as we all do, and have probably been heavily googling psc. One piece of advice is don’t let all the ‘worse case’ stories worry you. It is entirely natural to have a confused mix of emotions when the diagnosis is confirmed. I only ever see info from the net as supplemental to the real facts that only a good hepatologist can provide sound information for your son’s particular case (again, all cases are different).
I also have small duct psc, ibd and on am on mezavant for the ibd, so in a similar position to your son. I have had this for 2+ years. I am 43 years old. I was offered urso by my hepatologist last week but she said it will do little to alter the course of the disease, so I declined. My understanding is that it is much more beneficial for large duct patients who have more severe symptoms. It seems small duct symptoms are more varied than large duct psc however much less severe and in all likelihood if it remains as small duct psc it could be many decades until any serious symptoms occur.
Thank you, that’s very interesting about the Urso. My son has been given a script for it but we were told the same thing, that it doesn’t alter the course but I wasn’t told that it is more beneficial for large duct patients. I’m thinking that the fewer drugs the better until there’s something that does have some a clear benefit. Thanks for your story and yes, I’m slowly backing away from the internet because the stories are honestly heartbreaking. I hope there is a good outcome with the Vancomycin and with stem cell therapies as well. The recently diagnosed, and everyone really on reading some of the research, can probably take some comfort from these possibilities. Good luck to you. M
Good Morning Melanie,
My husband was diagnosed as a young buy, both with UC and PSC like your son. I’m sorry you have to deal with this condition. I can’t imagine how a mother must feel in this position. I pray you find comfort and rest and a healing be given to your son.
I want to mention that because of your son’s early diagnose please don’t take what you read online as what is in store for him. PSC effects everyone differently and age plays a huge part. Our doctors reminded us of this constantly.
Eric’s comments were spot on - allow your son the freedom to care for himself to some extent. My experience has shown me that I need to allow my partner to set the tone and not project my worry on to him (as hard as it may be).
As his caregiver I found solace in this group and the support I received was unbelievable; I hope you find the same.
Thank you Gloria, I’m still in the early stages of grief and shock, I just can’t stop crying whereas my son is reasonably calm and wanting to live his life normally which of course is healthy and as it should be. I will let go and let him live his life but right now I just want to go back in time or wake up from this nightmare.
Big hugs Melanie.
Melanie, when I was diagnosed, it took quite a while for reality to hit, and for me to understand/research what psc is, what it does, and what can be done about it. The reality exists that there is not a lot that can be done proactively; it is more just treat the symptoms when they occur. Luckily, psc usually progresses slowly, and more research is being done.
As knowledge is power, research, learn and reach out to groups like this. But keep in mind that it can be a roller coaster as it affects different people differently and is completely unpredictable. As many horror stories exist, there are a lot of success stories as well.
I never had the symptoms of ascites, HE and varicies. The possibility of those scared the &#&#$%^@# out of me.
Eric shared his reply to my post. My son was recently diagnosed with PSC and has UC as well. I cried a lot like you and was terrified of everything I read online until I found this group. Justin, like your son is also 16. I like all parents want the best for him but I realized I need to be strong for him and stay educated. Since Justin was diagnosed he has been on Ursodiol. His latest ATL was 13 down from 72. Please use the people on this forum as a support. Their shared stories really help in seeing this disease can be managed . Stay strong. Best wishes for you and your family.
Jeff and Carrie
Thank you. I’m…yep, still in a state of shock, strong in front of my son and completely lost when alone. This group is a help but each time I see something confronting I am lost again. I’m hoping Vancomycin offers some hope and in the longer term, stem cell therapy although it still seems a way off, he’s starting the Urso today, we had to order it specially because presumably it is rarely ordered. Carrie all the best to your son, it’s so unfair, it’s an age when they are beginning to spread their wings, demand independence and make decisions about their lives. But yes, one has to live and not dwell on it all the time. He’s embracing life and not dwelling, but the light has gone out of my life. Jeff all the best to you, I’m glad you haven’t had those symptoms, they scare the hell out of me too.
My 19yo was diagnosed a month before your child and I feel your pain. My daughter is okay, I’m a mess. But it gets better. About the Ursodiol, when first diagnosed, her ALP was 800 and two month sales later it’s 400. Her ALT and AST were about 200 and now 75. She has a way to go to get to normal, and she’s only taking 600mg a day (they wanted to start of low) but it does seem to be bringing down her numbers which can’t be bad. I just wanted to throw that out there. I’m not sure how elevated your child’s numbers are, but if they’re high, maybe it’s worth a try and you can go off the med if it doesn’t work. Again, I understand what you’re going through. It’s all a horrible shock.
Thank you Joki, I’m sorry to hear about your daughter. It’s so hard, probably because we, the parents, do a lot of the research and see the various complications and end points and it’s devastating. They, on the other hand, just want to get on with their young lives, which is good really because they seem to be able to do it and cope with it better than we do. My son’s numbers have come down on their own and our doctor feels that he wants to see exactly where they are going before my son starts on the Urso and I feel the same. His GGT is the only one in the abnormal range now (147), all the others have returned to normal after going fairly high after a couple of general anaesthetics. So we’re watching and waiting. It’s so strange because my son seems perfectly normal now which has made a big difference to how I feel too. I expect we will start on the Urso but we’re just waiting for his labs to plateau. Best wishes to you and your daughter.