Hello Everyone, my name is Vasni I am a 24 year old single mother of a 2 year old boy currently living in Texas. Two days ago I was diagnosed with PSC, this is all new to me. Google says that you need a transplant 9 to 18 years later, but I’m a little worried about where I stand since I’ve had high liver enzymes since I was 15. My bilirubin levels are fine but my enzymes are as follows: AST 81 and ALT 165. Not sure what that means or how worried I should be. Doctor said my liver didn’t show any inflammation or cirrhosis yet. Also read that most get UC as well, what are the symptoms of That? And can I prevent it? And How? Has anyone tried a special diet or anything that has helped their symptoms or helped slow down the progression of PSC? I have so many questions. Is it true that 2 cups of coffee a day help your liver? Will I need to stop consuming milk and related products…and bread? Gluten? You guys seem to know more than my doctor. If anyone takes time to respond thank you in advance.
Yes some researches have shown that people who drink coffee have less risk for psc but it is not totaly proved. Urso can decrease your enzymes and may slow down psc progression. I wish your future be hopeful with your son.
My doctor said there was this medication but never gave me a name but he told me it did nothing…he just made it seem like there was nothing to do but sit and wait.
Fear is brother of death. Don’t be afraid of psc .Just see God plays hope that God have a good act for us .He is a chess king and at last all of us will be checkmate.
Welcome to the group. Sorry you are having to face this at such a young age, but now that you have been diagnosed with PSC, it’s now time to take control of your emotions, get the proper medical help and treatment, and at the same time continue to live your life to its fullest. Please don’t think that this is the end of the road and there’s no hope. Education about this disease is key to managing it’s progression. We are here for you, we will help you take this one step at a time and you will make it!!! I’ll start with a few questions and observations and then you please respond. Then myself and others in the forum will give you input from all our varied experiences. PSC is one of those diseases that is so unpredictable. Some people progress slowly with the disease, while others move at a more rapid rate.
- The first thing you need to be sure is that you are under the care of a hepatologist associated with a transplant hospital. This is a physician that specializes in the diagnosis and treatment of liver disease. This is not your local PCP or GI doctor. PSC requires a specialist to get the very best care. You need to be in a position, so when things turn ugly, your doctor will have all the connections to get you on the transplant list at the appropriate time.
- Educate yourself all you can about the disease. This site is an excellent place to start. Read through the forum discussions, reply to things you don’t understand or have a question about. Folks here in the group will do our best to answer. No question is a stupid question. We have all faced what you are facing so we know where you are coming from.
- I would encourage you each and every time you have an appointment to take a family member or trusted friend with you to take notes, and to help you ask the questions that you either are afraid to ask or forget to ask. This disease needs to be one the whole family shares. They’ve got to understand that PSC is not caused by drinking or anything like that, but it is an autoimmune disease that will eventually lead to transplant.
- Stay away from any liver cleansing diets or home remedies to cure the disease. Things like this can cause more harm than good, and sometimes be very dangerous to your health.
We look forward to hearing more of your story. All things being equal, you will live to see your grandchildren one day
PSC 2011 / Liver Transplant 2015
What about diet changes? I don’t like doing cleanses since I think they do more harm sometimes, I believe your body cleanses itself, but are there any diet changes that may help?
Eating a healthy balanced diet is a good thing, but to tell you the truth, my doctor didn’t put any restrictions on what I ate. In fact, when the disease progression gets too bad, there may be things you love to eat now, but will not be able to stand the smell of them, the thought of them, etc. You will have to eat what you can tolerate. For me, the nausea got so bad, we had to purchase a skillet and my wife cooked a lot out on the back porch. I rarely went in the store when shopping for food when I was getting worse as just seeing the food and smelling the smells was unbearable. For the nausea, I’d encourage you to ask your doctor to prescribe you Zofran. This is a good anti-nausea medication that doesn’t make you sleepy. The bottom line is that you will have to eat what you can eat. For me, I ate a lot of fast food at times. For some reason eating McDonalds I didn’t have to think of the smell of it cooking. I know it sounds strange but this is a very unusual disease.
Hope this helps…
Vasni, I’m sorry to hear about your diagnosis. There is a lot of support here. My son was recently diagnosed. We were not given any particular recommendations but based on my reading of the literature and current research trends, my son is taking a very pure brand of fish oil, eating a normal but healthy diet cutting out high glycemic foods and in particular, he is taking probiotics. In relation to preventing ulcerative colitis, good gut bacteria seems to be an important factor at play. Reputable brands of probiotics are not going to hurt you, Yakult has had good reviews in Choice magazine. He also exercises and gets a good sleep at night. I can’t say why but his liver enzymes are dropping steadily, some are returning to normal after going very high. Good luck.
Hi Melanie! How old is your son? And what probiotics is he taking? Are those good gut bacteria??
Also, can one have normal enzyme levels and still have psc?
Yes, there will be times that your liver enzymes may go to normal in the early stages. As progression intensifies though that will be hard to maintain. After an ERCP sometimes levels return to normal ranges for a period of time. Also, taking URSO helps maintain more normal-like levels. Just keep in mind though that URSO is a quality of life medication, a very needed and helpful med, but not a cure.
Hi Vasni, My son is 17. He drinks 3 Yakult yoghurt drinks everyday on top
of a diet high in green leafy veg and so on. We chose Yakult as it appears to have the right sort of species. Some probiotics in tablet form are
just powder. But please don’t mistake me, I don’t claim this to be any sort
of cure. The goal is to be in optimum health whilst living a normal life.
But having said that, good gut bacteria have been found to reduce
inflammation and is the subject of lots of research and the findings are
very positive. It won’t hurt you so it’s worth a try. I wish you all the
best. If you want some research papers feel free to pm me.
I’ve read a lot about URSO and there have been many studies. I would suggest you do the same and make your decision whether you want to take it or not. As I understand it it thins the bile so therefore the bile ducts may not stricture as they would without it.ive also read that it can make your LFT’s look better on paper but the hurt is still out if it really helps. As any drug, it does have side effects so that is what you have to weigh out.
Fatty food can cause nausea and put demands on your liver . Also, it isn’t a healthy choice. If you develop fibrosis and subsequently cirrhosis and your liver function worsens, you will need to be sure you are taking supplements for vitamins and minerals and especially the fat soluble vitamins. MCT (Medici chain triglycerides ; like coconut oil) will aid your body in absorption of these. I mainly use high temperature coconut oil when cooking and baking instead of butter or other oils.
Not all PSC’ers develop UC.my husband didn’t. He’s been transplanted for 6 mo now, which was 6 yrs from diagnosis. Not all PSC’ers get sicker at the same rate so don’t make assumptions about your situation. Make all your doctor appointments so you are tracking it well, maintain really good insurance (believe me-it’s worth it) and do your best to understand the disease, seek out your support community, and learn to live your life with joy and gratitude in the
midst of the trials that PSC can bring. That will be the gift that you can give
To your son. Help your family and/or friends to understand the disease and let them support you and your son through this.
And I’ll say what I’ve said many times
before- this group is great!
There is an excellent article written by a
Professional in the field (maybe a Diatitian) about diet and PSC that I can’t find right now.
I thought someone posted it here at one time.
It’s Worth finding.
Vasni, welcome to the psc club! Sorry you have this diagnosis.
There is a connection between psc and colitis. There is a percentage of people who have both. If you have not been diagnosed with the uc, focus on handling the psc. I had uc in 2006, resulting in losing my large intestine.
It was in 2013 that I was diagnosed with psc. You made a comment about the average time from diagnosis to transplant being 9-18 years. There are members who who have had psc for over 20 years and have not received a transplant. I was 4 years.
Mark was right-get to a hepatologist at a transplant center.
I would also recommend NO alcohol. Do your research-I think it is common upon receiving any major diagnosis that it takes time to process what the disease is, what it does and what can be done about it.
With psc, at the risk of scaring you, there are only a few thing that have been shown to have any affect on psc, and those can be disputed.
But eating a balanced diet, exercising, limiting fats and avoiding alcohol will all go a long way to helping you.
Keep in mind that psc can be a roller coaster ride, and it will test your strength, sense of humor and your patience. You can be asymptomatic for a long time and then have several symptoms pop up.
Sorry to hear about your diagnoses. My husband has had UC since he was very young and he is able to control it with medication. Obviously very difficult to recommend meds as that is best for the doctors to tell you but my husband takes Asacol which is very very strong and Omeprazole. Omep will help with the gastrointestinal side of the UC and helps release the build up of gas causing pain in the chest - almost like a reflux you can get when pregnant (so my mother tells me - I’ve not been pregnant)! UC causes flare ups causing some time spent in the bathroom but it is controllable. Best to eat as healthy as possible, avoid processed foods (as should we all anyway!!) and sugary foods and drinks. Stress is always an enemy with these sorts of illnesses so try and listen to your body and rest when you need to rest, try to remain calm and not overwork yourself. If your stressed your body will react in a not-so-great way and make you feel very ill. All the best with the future though and I hope you find some comfort and ideas through these posts. X
Thank you for your response. How long have you had a transplant for and has your PSC returned ? How long after transplant did you begin to feel better?
i will look for it, I’m currently looking for anything i can find that might help.
I do have coconut oil at home but hardly use it. I guess I will start now. I am currently looking for a good doctor in my area. Is your husband fully recovered from transplant or how long does it usually take?