Poor guy, I’m sure with autism it can be even more challenging to cope than it already is with all these health issues that haunt him. I’m glad mesalamine is working for him, it did for me for many years! Unfortunately, I’ve gone through all the meds… and now concerned about surgery, if entyvio doesn’t eventually kick in. Moving my dose to every 4 weeks instead of 8 and hoping it may help? With the PSC, no stricture yet for me but we’re both pretty close into diagnosis so it’s hard to stay hopeful for long term… I don’t read that many successes for that long without surgery and my doctor won’t say a thing about where were at in treatment studies but probably going to switch and still hoping that he and I both will see a treatment in our run of PSC 
Hi Corina,
The way you wrote sounded just like Asma. Thank you so much for sharing the GI name. I will research. I hadn’t asked my hep about a GI doc yet.
Please feel free to private message me here anytime. I find for myself it has been a great benefit to connect with those that “get it”. Might even be a bonus for your Ian if he is willing.
You are a rockstar of a mom, many blessings to you and Ian. I do hope we keep in touch - Strength in Numbers!
Hugs
Jennifer
Jennifer,
I’d be wary of using a GI. If you have a good hepatologist stay with him/her. They can do everything a GI can do and more.
Mark
Hi Mark,
I’m a little confused - you are saying that my Hep can also do my colonoscopies and deal with any IBS issues better?
First and foremost is my hep - I need a baseline colonoscopy which my hep said I could wait until 2019 on if I chose since right now I’m symptom free in that area since Q1 2016.
Thank you - and I was not able to respond to your thread on the liver conference, thank you for all you do and all the information you bring
Now every situation is different, but keep in mind that a Hepatologist is also a Gastroenterologist. Once I was diagnosed with PSC by a hepatologist that same doctor managed everything GI related including regular colonoscopies. I did have some IBS issues during that time and he managed those as well. Even though his specialty is in liver disease he also knows everything related to the GI tract as well since they are so closely intertwined. At least for me at Duke, they wanted that one doctor managing everything associated with PSC and the GI tract and I believe I had a better outcome, instead of having two or three different doctors with different approaches and opinions.
Now when it was time for a colonoscopy or ERCP, there was an Advanced Endoscopist that was part of the liver team at Duke and he did these day in and day out and always did my procedures, but I never consulted with him in an office setting. All reports went back to my hepatologist. It prevented a lot of confusion and differing approaches to my care.
I hope that makes sense. And here again, different medical centers may approach these things a bit different, but for me it was great and I would not have approached it any other way. Thanks for your words about the liver conference and meetings with members of Congress. It was my privilege to represent the PSC community.
Mark
Mark,
In the case of Virginia Mason their GI.department has PSC specialists/heptologist (Asma Siddiqie, in this discussion) AND IBD specialists (Teresa Vasicek in this discussion) both of whom work in concert together and even consult after or during our appointment. For ERCP we also have an Advanced Endoscopist. I just knew she was asking about an IBD specialist in addition to the heptologist. They are also a research hospital and have already placed Ian in an ongoing UC study. I am amazed at the coordinated and highly specialized care we are receiving.
Hello
I just wanted to tell you that I was diagnosed with PSC when I was 28. I am now 46 and living almost symptom free.
Some itching and feeling tired, but it could be a lot worse. Good luck and GOD bless.
Corina,
Thanks for your post on this topic. My biggest burden about all this is that our PSC patients need to be seeing a specialist and not just your home down GI doctor due to the complexity of the disease. Your example of Virginia Mason’s approach is excellent and the main thing again is the collaborative work they do so that all the specialists treating the patient with liver disease are on the same team and have the same goals. So many times we see patients that feel their local GI who does a good job at what he/she is trained to do can also treat their liver disease effectively. And there are cases out there where some local doctors can, but I’ve also seen the opposite and then we have some serious consequences to the life of the patient that are now in jeopardy because they did not seek out specialized care.
We are on the same page in all you stated. Thanks again. Hopefully that will be clear for MzzP’s concerns.
Mark
Hi, as the mother of a 20 yo with UC and PSC, I strongly enoucrage you to research vancomycin. My daughters numbers were 10x normal and, after 2 months on vancomycin, all are normal. You’re young and in the early stages which is when it works the best. My daughter is on 250mg 4x a day. ANI brand pill form. If you google PSC and vancomycin, you will find serval articles. Its been used about 20 years but only now gaining recognition. There is a clinical trial being done but its still a few years away from completion. If you decide you want to give it a try, encourage your dr to give you three months to see if it makes a difference. Good luck I wish you the best. I know how scary it all is.
No. The UC has been in remission for so long. I do show some sporadic cirrhosis in some spots in my liver as shown in last MRCP and I do have a blood clot in my right hepatic vein for which I need to take Coumadin. Yes, a hassle, but no real serious pain at this point. I realize it’s a possibility. I’m not being unrealistic. I just try to focus on each day and do what I can.
Hang in there!!
Nlapeyre,
I get it. We’ve all been there at some point and everyone has their own way of dealing with and rationalizing this diagnosis. I’m not sure that anyone does it perfectly, but we all do it.
Something that has often worked for me in the past is that i set a deadline to be sad/mad/pissed off a the world. I can be as emotional as i want up until that point, but once that deadline passes I suck it up and make the best of it.
Everyone has their own history and path they have taken, mine certainly wasn’t easy but wasn’t the worst.
UC at 16. PSC at 18. Full colectomy and J Pouch at 21. Currently 35 with real PSC symptoms popping up in the last 2 years. Getting sicker but still work full time, chase my kids around and do as my wife says.
PSC and liver transplant, for me, is going to be the most triumphant chapter in my life, I decided that. I chose that.
My advice, for what it’s worth. Get a great doctor. Get blood done every 3 months. Live well. Enjoy life and decide to make this one part of your life into something positive instead of negative. This doesn’t have to define you - not even close.
E
Eric,
Thanks for the excellent presentation you gave and the points you made. Nlapeyre hang in there and just try to find a peace in your soul about your diagnosis. There’s nothing you can do to change it, so as Eric well said, suck it up and just go on living life the best you can. PSC will get your attention when it’s time. Take Eric’s advice and just move on with your life.
Mark
When you say symptom free has your ALP always been elevated though or stayed down? Because mines been non stop raising and I just got diagnosed
has your ALP always been elevated though or stayed down all these years? Because mines been non stop raising and I just got diagnosed
Nlapeyre,
It is normal for PSC patients to have elevated ALP labs from diagnosis till transplant. Mine never went down much in the 200’s but stayed in the 300’s and higher. Don’t let it be a panic button in your thinking. You will have to resign yourself to the disease. You cannot change your situation, you just have to continue living life to its fullest and when PSC starts talking to you loudly, you go for intervention to your hepatologist. Worrying will not help. You will make it, just take one day at a time. Have a wonderful weekend 
Mark
My levels pretty much stay normal. My bilirubin stays high as well as my iron.
I have not ever taken anything prescribed for this disease. I eat a very good diet and work very hard.(Construction) Its worked out for me.
When I 1st started seeing my hepatologist my ALP was in the 300’s. Then I started taking a supplement called juice plus and within a year my #'s started going down. I went in for a regular visit with my primary Dr and she said, “I don’t know what you’re doing, but keep doing it. Your liver #'s are incredible!” The only thing I did different was taking the supplement. That was over 15 years ago. My ALP is about 165 now and has been around that, give or take every since. I buy a cheaper version of juice plus from Costco called juice festiva. I hate to admit it but I am not one of those people that work out every day and am on a terrific diet. Although I do try and do weight watchers and try. I just try and live my life the best I can and enjoy it.
Yours did seem to progress quicker than others though and you got a transplant within a few years right? It’s hard comparing it knowing that 
it’s reslly hard to not be scared. Also you may know the accuracy on this but something that terrified me is that up to 35% of PSC people get bile duct cancer? Which is pretty much deadly since they often don’t catch soon enough and rarely do transplants for that purpose. How do you not stress out over this… so hard
Might as well buy it and try… thanks for the suggestion!
Also. Don’t know if anyone has ever suggested the herbal supplement “milk thistle,” but I have been taking 2-3 times a day since I was 1st diagnosed. If you read about if, you’ll see how it is a top herb in healing the liver. Believe me I am not an alternative herbal pusher. These are just things I do for the PSA.
Again. Best wishes! Hang in there. You’re young. You have a whole life to think about. Live it!!
