Hi everyone, me again, 21 years old with UC and auto immune hep. Just got the call my MRI shows psc. It’s mild for now- but my alk phos are going up and up and I’m terrified. I’ve been in a UC flare for over a year I can’t control and I just can’t take it anymore I want to just die. I am deathly afraid of liver transplants and everything I read on anythinf is so scary and not hopeful and just sounds like terminal cancer pretty much unless a transplant. I can’t take another thing right now and all that’s going through my mind is transplant and getting very ill even though I’m not there yet. I’m also terrified that since I’m 21 the disease will have plenty of time to develop and progress and From this moment on I’ll always feel like I’m progressijg towards worse health. Anyone out there who’s never needed a transplant? Anyone out there who has had it for a while and felt symptom free? I need optimism because I am broken down
I am so sorry that you are battling all this at such a young age. well, im 24, I guess I feel like 35. Anyway, Ive had signs of PSC since i was 15, yet it was hard to get a diagnosis for me, and I also moved around alot, so I just got diagnosed last Dec. My ALP is in the 600’s right now and it has been climbing for the past year. I have no symptoms other than being tired which a cup of coffee fixes. What do your numbers look like at the moment?
Dont feel discouraged, i know its easier said than done. I feel like we all went through some sort of gloominess when we were first diagnosed and the days that followed, I still get sudden bursts of fear of whats ahead but you have to enjoy life.
Alot of people here have lived with this for 10+ years, PSC is very unpredictable and your stress level and optimism deff play a role.
Enjoy your life to the fullest, and please dont wish for death, ALOT of people have so many crippling diseases that are way worse than ours and they face life with a smile, so who are we to let PSC defeat us??
we are here if you need to ever talk. You are young and your body is strong, im sure if you set your mind to it, you will come out better on the other side.
I’m sorry to hear that! I’m also 21 years old, so I understand the feeling that life is unfair. Unfortunately, at our age transplant is definitely going to be needed. That said, people can live a real long period of time (20-30 years) before they need a transplant, so you ain’t dying yet!
You wake up to a brutal reality when you get the diagnosis, but there’s nothing else to do than keep living life a day at a time (yeah I know, it’s a cheesy line).
You think it will definitely be needed, even if maybe medicine is involved at some point?
It’s low 300s right now. If your numbers are really high does that mean there’s lots of damage being done?
I know the diagnosis of PSC is a frightening thing to anyone but especially someone at your young age. The first thing you need to do though is get a hold of yourself. PSC is not an automatic death sentence. With the right hepatologist looking after your care you can live a full and productive life. This is not the time to fall apart and be ready to die. You are too young and you have your whole life and future ahead of you. Yes, we all went through what you are to a degree, wondering if we would ever see our children get married, would we see our grandchildren who would take care of our wife and children. All those are similar things to what you may be experiencing right now. But this is not the end. The best thing right now is to educate yourself all you can about PSC, that’s what this forum is here for. We are going to be with you all the way through this long ride. Yes, there will be days that you will not feel well, well on those days you take time to rest and deal with it, but there will hopefully be many more better days. You must plan your future. If you were planning to get a degree in College, go for it. If you have dreams to get married and have children one day, follow those dreams. You must live each day with hope and when sickness gets you down you deal with it.
Make sure you have a good support system around you. Make sure if you have family that you take someone with you to each and every appointment. You need someone with their emotions under control that can advocate for you, remember what the doctor says, etc. etc. I would suggest, since you are 21 if you still live at home with your parents, I would strongly recommend that you sign a health-care power of attorney so that your parents or someone close to you can act in your behalf should the need arise as well as have access to all your medical records, etc. You also need to sign a durable power of attorney for someone to be able to take care of any business matters for you if that need arises. It will make things much better for you and your family as your disease progresses.
A couple of questions. Are you under the care of a hepatologist that is tied to a major hospital that does liver transplants? If not, you need to do that next. Not your local GI doctor. He/she is fine for UC and other GI problems, but PSC is a whole different thing and you need a specialist dealing with this for you.
If it will bring any comfort regarding your Alk-Phos levels being in the low 300’s, mine stayed on average in the mid 300’s for the 4 years from diagnosis to transplant. The labs that you will find that will pretty much stay abnormal for the duration of the disease will be ALT, AST, GGT, Alk-Phos and Bilirubin. Just as an example, my GGT was averaging numbers of 600-700 range although closer to transplant it went down to the 500 range. The normal range for GGT is 10-61. So you need to expect high liver numbers with PSC.
Well be assured we are here for you and you can reach out anytime either in a post like this or feel free to private message me as well. Take care and have a good evening.
PSC 2011 / Liver Transplant 2015
My son who is 28 was also just diagnosed. After finally getting to a great hepatologist at a major transplant hospital (Virginia Mason in Seattle) we were reassured that much of what is online is somewhat outdated and very scary. The newest information is showing that most PSC patients have a good 20-25 years or even longer before needing a transplant now (websites are still saying 10 years!). Also, there are many treatments in study showing good promise - hey, they may even find a cure long before you’re ready for a transplant! Mark is right, live your life to the fullest - and that means also the healthiest you can. Take it easy on the exhausting days and give yourself a break when it becomes too much. The things we’ve found were essential and things that made us feel like we were ‘doing something’ were him getting into counseling to deal with the grief and frustration and learn some coping skills and to start making healthier choices for diet, exercise, etc. (but he still indulges in the occasional ‘break day’ or meal.) At Virginia Mason the GI department has specialists for everything… my son has a PSC doc, a UC doc and one that will deal with any bile duct issues - IE: ERCP’s to open strictures. His UC doc was super helpful about making sure we understood all the different levels of treatment available - including a new treatment showing good results and even remission in children and some young people (of UC, not PSC). I actually have 2 sons with UC and getting their inflammation levels to 0 is a major goal the docs have. I love that the next med up is being offered to us as a self-administered shot instead of an IV infusion as we were told would be the course elsewhere… the point is, get yourself a really good doctor who deals with PSC and UC on a REGULAR basis and you’ll have more options open to you (We travel 5 hours each way we value the expertise so much!) Also, check out this section about young people and PSC: For Young Adults (Teens and Early 20s)
I truly appreciate that message given my hepatoligist at UC San Diego did nothing to reassure me of anything. I will probably be switching that being said. I’m worried about it progressing , my MELD score is still low but I do itch and my alp just keeps climbing. No structures yet. When was your son diagnosed and has he had any strictures or symptoms yet?
I too am at VM in Seattle. May I ask who you like as a GI doc? I need to do my baseline colonoscopy as my last was in 2016 prior to diagnosis but due to having IBS issues off and on for over a year.
My hep there is Asma S. Absolutely love her. Your experience sounded very similar to mine.
You’ve much on your plate and I will be sending blessings and support to you and your boys!
I understand the fear of the uknown. The ugh at the thought of ever needing a transplant… and just wondering how it will be for me in the coming years.
Based on my experience - having been diagnosed just Jan 2018 - is that time does heal. Knowledge is overwhelming at times, but it also has made me realize that I am Not Alone and that our bodies are amazing vessels as are the doctors who treat us. We must Trust in Both. Not easy as I’m use to trusting my actions first and foremost and with PSC, it’s really out of our control.
As many have noted - what’s in our control is continuing to live our lives to the fullest all the while staying vigilant with our health needs. Building a support group is HUGE - I’ve always been very independent so I’m learning now to ask for help when needed.
Take it one day, one hour, one minute at a time. Give yourself time to grieve but also get back on that horse of Life every day. It will pay off, I promise!
Take care and continue to reach out when you need
Hi Nlapeyre. Wow! You are so young to have to deal with so much. 21 is a tough time, even when healthy. It’s hard to believe sometimes, but things will change. Good times come and go, but bad times don’t last either. Believe me when I tell you that we really never know what might happen?! I’ve been seeing a number of things lately that make me hopeful for progress towards a treatment or “cure” for this PSC crap! I’ll spare you most of my positive thinking stuff. lol
If it helps, I will tell you that I nearly died before a UC diagnoses 22 years ago. Thought it was cancer. I even got tested for HIV. Fortunately, mine has been controlled really well. As for the PSC stuff, I was diagnosed with that in 2006. It seems that my alk phos was around 400-500. I was around 1400 recently. I have lived a lot (of life) in the last 12 years, and will live a lot more! I’m currently working towards a transplant. I hate the idea too. I think that anyone would? It is an extreme option. Certainly not like getting a nose job done.
Just a few other thoughts if you’ll indulge me. Life is 100% fatal. Everyone of us is progressing towards worse health every second of every day. Some of us will get hit by a bus while crossing the street, and some will die in their sleep at 99 years-old. Don’t waste the time that you have. Worrying about the unknown is a terrible waste of your life. Nearly everything that I ever worried about never happened.
Maybe you can use this to strip away a lot of the nonsense of life and focus your energy on what is really important?!? It is hard, but I think that you can. Please be kind to yourself, and give yourself time to heal. As Mark said, “live your life”! Please don’t hesitate to reach out when you need optimism or just to vent…I’ll sure try!
Wish I could say the same about my UC! I am so thankful to have been in remission for 5 years prior to this major flare that is uncontrollable and entyvio is 6 months in and still not exactly working but maybe still has potential so hoping for the best it’s awesome that you have controlled yours, UC is such a spectrum! As for the PSC, would you mind mentioning what potential treatment info you have come across? My Hepatologist won’t throw me any bones and kept it short and sweet at “no treatments” and when I asked if there would be all he could say was maybe and didn’t offer me any info further so it’s hard to stay optimistic. I am working on trying to not stress about something that isn’t super bad until it’s at that point, i do have some itching as I type this though which of course worries me and gets me thinking how fast will this progress ? Anyway , any info on what you are referring to as potential for PSC would be appreciated by myself and my mother! Thanks for responding to my thread, online forums people can be either dangerously stressful, or a great source hope you can make it without a transplant… for me it’s a huge fear of getting cut open and major surgery phobia that is tough for me, on top of already being overwhelmed by my health issues as is!
Sorry you have psc in addition to UC. I had UC for 14 months-never was in remission.I know the stress that causes at the same time we are told that stress makes UC worse.
With this new diagnosis, knowledge is power, and it can take a while to sink in. Your doc is right-there is no treatment but to treat the symptoms when they arise. There are very few things that can be done preventatively. Some medications are being researched, some out are a bit controversial.
Keep in mind that with psc, some people go for 15+ years with no symptoms. Others are not so lucky. I lasted 4 years, two months after diagnosis before I received a transplant.
It is normal to be scared and fear the unknown, but some lessons I learned from my UC fight really helped me with dealing with psc:
Keep your sense of humor for the bad days. You will have them.
Focus long term.
Be flexible. UC and psc will test your flexibility and adaptability.
Hi Nlapeyre, You’re welcome. I’m no expert on the medical side of things, but I have read several things recently that feel somewhat promising to me. One of the “treatments” that I have seen recent trials for is a regimen of vancomycin. I have seen a number of these that indicate that there may be some improvement for people that are not very advanced into the disease. It is very interesting to me that a lot of what I have seen indicates that PSC may be related to gut bacteria. I feel hopeful about that. There are some super smart people working on it.
I’ve been on cholestyramine for itching, etc…for about six years. It has worked well for me. Thanks for the good thoughts. I’m resigned to the transplant and have accepted it and embraced it. I want to stay in this game as long as I can. I didn’t feel that way a few years ago. But, I’ve been cut on before. Not looking forward to it, but I am looking forward to getting health back. I have no personal experience with a liver transplant, but my Mom lived on a transplanted kidney for thirty years. She lived a whole lifetime with that thing.
Hang in there, hug your Mom, and do the best that you can for as long as you can. Never know what the future may have in store for you?
As others have said, we have all gone through the same feelings of being completely lost and devastated by this disease, but having good doctors and knowledge definately does help.
I thought I was finished when I was told I needed to find a liver/hepatologist doctor for a transplant. My #'s were high at the time and I thought, “This is It! I’m done!!” However, upon speaking with my liver doctor who specializes in transplants, he said people with PSC can actually live to be 80 years old. I was shocked!!
My #'s are near normal now.
Well, I was diagnosed at 13 years old with UC, in remission over 20 years. Only currently taking the medication (sulfasalazine 500mg/4x’s/day).
Also take Ursodial for PSC 300mg 2x’s/day.
I was diagnosed with PSC in my late 20’s, early 30’s and I am now 57 years old, only having occasional pain but just a flash. I just had a colonoscopy this last week, symptom free. Don’t have to go back for another 2 years. I get MRCP usually once a year.
So, just live your life and be good to yourself. My husband and I are going on a cruise in a couple weeks to celebrate our 25th Anniversary.
Don’t let the PSC control you!
I wish you all the best!!
Hi, I feel compelled to let you know there are some of us who don’t have significant side effects and lead quite a normal life . I was diagnosed with UC when I was 13, had my colon removed when I was 24 because I didn’t have any quality of life (daily accidents that I became good at hiding). I was diagnosed with PSC after going thru medical screening when I worked at the University of Wisconsin Hospital. I was pretty much symptom free until 2010. I have been on the transplant list for over 2 years. I have found ways to eliminate most of the symptoms like itching and muscle cramping. I am very active with sports and have a computer science career and also run a small business (very busy but I love it). I think an active lifestyle and religiously taking the right meds has helped with my attitude and disposition. I was scheduled to have a live liver transplant from my younger brother but they called me in 2 weeks before the surgery and said my liver is not a viable candidate for this type of transplant because my main portal vein and superior mesenteric artery are occluded . I would look into the colon removal (pouch procedure) to take care of the major UC challenges and then live life to the best of your ability. The bottom line is that I am 55 with a major medical challenge but I chose to be optimistic for my future.
I have looked into it and have consulted with two different surgeons for it but don’t want to remove that organ until I’ve exhausyed entyvio since I am so afraid of surgery. When were you diagnosed with PSC?
Wow! In all this time have you had much damage to your liver over time? Have you noticed any correlation with your liver worsening when you’re flaring with UC?
Ian sees Asma too…totally love her! His IBD doc is Dr. Vasiceck (sp? Pronounced Vas-i-check) …again LOVE working with her!
Ian was diagnosed with UC in December only two weeks after his 39 yr old brother. He was diagnosed with PSC in January after his MRCP revealed that most of his small bile ducts are already shot and what appeared to be a stricture in his primary duct. He had one ERCP on which they couldn’t get the scope through and so they referred us to Virginia Mason. After thorough review of the scans they determined that the “stricture” is actually an image of the duct being compressed by an artery and did not require surgery since his bilirubin counts are not elevated. He has had some itching that required some prescription strength meds but it’s good again for now. Exhaustion and the emotional side are the biggest things we’re dealing with right now. Ian is high functioning on the autism spectrum also and we have a lot of other changes happening in our family that are compounding the stress level unfortunately (closing my business which is the only job he’s ever had and getting ready for the first move since he was 4). The PSC mostly has hit him that its one more thing in his life that he isn’t in control of. (The only way I see his autism play into it differently then everyone else in this group is that the overstimulation of the stress causes more of his ‘shut downs’ where it becomes difficult for him to function or communicate in that moment.) His UC doc just bumped his Masalamine to the highest dose in an effort to lower his inflammation levels although it is already currently controlling the diarrhea and bleeding. (She feels strongly that keeping inflammation levels as close to 0 is one way to slow progression and be proactive against the cancer risks). If that doesn’t work we go up to the next tier of meds. His liver levels are still high (can’t remember the exact number off the top of my head but I they were still over 600 last visit)