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Primary Sclerosing Cholangitis (PSC) - Online Support Group

New PSC diagnosis

Hi, everyone just diagnosed with PSC a couple weeks ago. Feeling overwhelmed and didn’t get much information from my doctor. He recommended LFT’s to be taken every six months and yearly colonoscopies (as I have had colitis for 3 years). My MRI showed “beading” in some of my intrahepatic ducts. My bloodwork is all normal (so far). I’m contemplating referral to the liver centre in Toronto (Ontario), as my doctor is a gastroenterologist and I live in a smaller town. I don’t think this is a common disease and I want the best care. Looking for advice about diet, treatments, etc. Having trouble sleeping and feeling stressed with bouts of panic. Advice on anxiety/sleeping medications that won’t hurt or cause damage to my liver. Any advice is appreciated.

Hello Kelly.
I am 55 and was diagnosed 3 years ago.
I also have UC.
I have been blessed with very slow moving psc. Blood numbers all good except a slight elevated billyrubin.
This disease is NOT to be feared. Most live well with this disease. A liver transplant is last order, then still gives a quality life.
This is a great board, with carying people.
Especially the creator!
Feel free to email me if you want to chat.
I can send you my number.
I hate typing…

Hi Kelly,
I’m glad you found this PSC forum. I know exactly how you feel about being overwhelmed with a diagnosis like PSC. But…believe me it is not the end of the road. There is much hope that you will get excellent care once you find the best transplant center to associate yourself with there in Canada. You need to be under the care of a hepatologist. This is a physician that specializes in the diagnosis and treatment of liver disease. The reason I mentioned transplant center was that it’s important that the hepatologist you choose has a close relationship with a good transplant hospital as he/she will be instrumental in getting you referred for transplant evaluation and listing. Hopefully you will not need this for many years down the road but you need to have a plan in place for the worst case scenario. Yes, blood work every 6 months is standard in early stages of the disease, but as progression and symptoms increase you will need them more often. With beading being seen in the intrahepatic ducts, eventually they will need to be cleared so the bile will flow better. You will have increased itching when that time comes, your bilirubin will rise substantially and there are other factors. If you ever have a fever that goes over 102 you need to get to an ER for antibiotics. Be sure you tell them you have PSC liver disease so they can get you on the correct treatment. The fever would indicate a possible infection.
We are here for you as I know you will have many questions. Please don’t hesitate to ask anything that comes to mind. We will be with you through this journey as you need us. Take care.

Mark
PSC 2011 / Liver Transplant 2015

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Hey Kelly
Are you itching at all? For me when I was diagnosed almost two years ago I had trouble sleeping for probably 6-8 months because of constant itching. I used Benadryl to help me sleep and for me it worked like a charm. I have heard for some people it works wonders while others it doesn’t help at all but it’s worth a shot. But always check with your doctor first just in case because you never know!

AJ

Hi Kelly,

You have come to the right place. This forum is specially for people with PSC. PSC is a progressing disease, so first advise do not skip any of your bloodwork and colonoscopies. Keeping blood work in check will help your doctors plan the best diagnosis for you. PSC has no definitive treatment only liver transplant is the possible cure.

I had this disease since 2013, there were no symptoms on my body except deranged liver function tests and itching all over. By March 2019 the disease progressed to such an extent that doctors put me on immediate transplant need. I had LDLT in June 2019. I was fortunate that my brother donated me his part of liver and saved my life.

This forum is a great place to be educated about this disease and helping each other. A lot of people had helped during my course, especially mark. I am very thankful to everyone.

Hi Mark,
Thanks for your reply. I’m finding it hard to get questions answered because my family doctor and my gastroenterologist are on holidays until mid to late August. I have talked to my family doctor’s receptionist and told her I would like a referral to the Toronto Liver Centre. She is great and went online and printed the appropriate referral information off their website. However, my family doctor hadn’t even received my official diagnosis/report from my gastroenterologist. Wondering how long this referral is going to take and what do I do if I need some medical care in the meantime? Nervous that my hometown hospital doesn’t know enough about this disease. How do I know if I need to go to a hospital? What symptoms am I looking for? Maybe I should drive the 45 minutes to Toronto General Hospital if I have any issues (as that is the hospital affiliated with the liver centre). Honestly, I do not feel like I was given enough information from my gastroenterologist. I do think he has some specialty in heptology but he is older and don’t know if he is up to date on most current information regarding PSC. Not feeling confident. Also was not given any information regarding staging of my disease.

Kelly,
I looked on the Liver Centre’s web site and just on the surface I was not generally impressed. I think if I were you I’d consider making a call to the University Health Network’s transplant program department and ask them if they will schedule you an appointment with one of their hepatologist that treats PSC liver disease. Here’s a link to their transplant department. This might be a good place to start and they can direct you from there. https://www.uhn.ca/Transplant/PatientsFamilies/Liver_Transplant_Program

Perhaps don’t mention anything about your present doctor unless they ask. I’m hoping they will agree to see you without an referral. If you can get into their program you can just stick with the hepatologists at that center.

As a rule of thumb, if you have a fever that reaches 102, you need to head to the Emergency Room. Tell them you have PSC liver disease and that you may be having a cholongitis infection. They will start you on IV antibiotics. If you have any issues and can make it to the transplant hospital go to their ER instead of your local hospital. They are equipped to handle your situation. I hope this helps. We are here for you.

Mark

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You should absolutely consider treatment with oral vancomycin. I can see if I can get you a doctor referral in Toronto for someone willing to prescribe this treatment. If you want information email me. Here is a link to my daughter’s story and a paper on this treatment. If you respond, you will typically not progress and will not need any other meds for either your liver or colon. https://www.ncbi.nlm.nih.gov/m/pubmed/29411404/
https://synapse.koreamed.org/DOIx.php?id=10.5223/pghn.2016.19.3.210
https://gostanford.com/feature/indomitablespirit?utm_source=fb-organic&utm_medium=commpost_2019-05-09_1A2B4C&utm_campaign=lacrosse_otherpd_feature__

Is vancomycin effective for adults with PSC and ulcerative colitis? Do you have any recommendations for a Toronto heptologist? I’m in the process of trying to get a referral to the UHN liver centre.

Yes it is absolutely. I will send a few emails to see if I can find a doc for you.

Can you tell me your age?

I’m 48.

Hi KellyM,
I am happy that you have found the support here on this forum.
After several ERCPs, having my gall bladder removed, MRI’s and what seems like a thousand blood tests, I was diagnosed with PSC in two years ago this coming Wednesday. My Gastro doctor referred me to the liver clinic at Toronto General Hospital. (UHN). I was told they are a leading liver clinic in Canada, so you are in good hands. So far my experience has been good.
Please don’t let it get you down. I know it’s discouraging, and hard to come to terms with it. It took me over a year to accept it personally, and have found it helpful to not let it get me down. It does get me down from time to time, but then I remind myself it could be worse. I also am continuing a healthy diet to ensure my body only gets good food. We are fortunate to have good care here in Canada, so ask lots of questions to the specialists, and here on this forum.

Hello Kelly. I am new to this forum and I can see that my perspective varies greatly from that of the other folks responding. Essentially I feel that mainstream ‘western medicine’ is terribly ill-equipped to help people with PSC. For me this has been a blessing in disguise. I was diagnosed at age ten and I am now 40. At the time of diagnosis, as now, they made it clear that there are no drugs that have been ‘proven’ to solve this problem. So by the time I was 25 I was already seeking and exploring all sorts of holistic and ‘alternative’ perspectives. I credit these for keeping me alive and out of the transplant room.

But don’t let anyone fool you, this is a difficult condition. Our bile is not draining into our digestive tract properly, which leads to all manner of digestive problems. And the bile backs up into the liver, which makes our liver and blood ‘bilious’ and not having the chemical composition that it should. I mention these things not to scare you, but because I prefer talk in plain english, rather than complicated esoteric talk about blood counts that don’t really mean anything to any of us.

For me the number one thing here is stress management and stress avoidance as a bottom line. Avoiding stress will allow your body to have more energy to work at healing the damage that it is doing to itself. The number two thing is diet - knowing that our digestion is significantly weakened and highly prone to inflammation (I refer to it as a car operating on three cylinders rather than four, for example), I eventually found the most relief by focusing on simple, gentle foods - learn to make mashed potatoes every morning, but consider using chicken broth and seasoned salt, rather than butter and milk for example. learn to enjoy steaming your vegetables and meats, rather than sauteeing them or (horror of all horrors, deep fry). A good seasoned salt like Herbamare is my best friend in the kitchen, aside from my steamer basket.

Because fats require bile to digest, we are in a catch-22. Like all humans, we need fats in our diet to be able to process fat soluble vitamins. But unlike most humans we can’t break down fats very well. I have found that coconut oil is the most gentle fat, with olive oil second - but heating these beyond a very low temperature makes them problemmatic. So again, I steam things or make soups as a rule, and then season with either olive oil or coconut oil, along with my beloved Herbamare.

Last thing is that because our digestion is weak, we may find joy in giving it a ‘kickstart’ after our meals, by taking a nice relaxing walk. And definitely try and take your meals VERY CALMLY - I have gotten to the place where I need total silence and zero distractions, just to let my body enter digestion mode. But again, I am 30 years into this. Your digestion is probably much stronger than mine and your intestines much less damaged from years of constipation etc.

Hope this helps, let me know if you want to talk more.

Peace - Mike

Would either Halifax or Calgary be ok? Or New York?

Hi Mike,

Thanks for your response. I really have been investigating various methods to manage this condition. I now have 3 autoimmune disorders - hypothyroidism, ulcerative colitis, and now PSC. I am exploring diet and trying really hard to manage my stress effectively. Would love to know more about what you eat? Do you eat dairy, grains, gluten, caffeine? I have been VERY anxious, stressed, and emotional since diagnosis which I’m worried may be exacerbating the PSC and the colitis. How do you effectively manage stress? Counselling? Any anti anxiety medication! I wasn’t given a lot of information at diagnosis so I don’t know what stage my disease is at so this is really weighing on me. My doctors are all on vacation right now so I’m just trying to get through each day.

Not sure you told me whether you would want to see a doc in any of the locations I listed above. I can contact a doc in Halifax if that is most convenient to see if he will consider treatment with vancomycin.

None of those locations are close to me. I live about 45 mins away from Toronto.

Ok I will ask my Halifax doc for a referral.

Hello Kelly,

I understand completely. I have been diagnosed back and forth with Crohns and UC but luckily it has only been severe and crippling pain and constipation the past 30 years, but have managed to avoid major surgeries.

I manage stress through qigong and meditation primarily. I also have a life coach, and I am seeing a chakra energy/reiki healer. My best healing experience to date by far is with a Chinese woman in Chicago named Dr Lisa Lau “Lisa’s Herbal.” Truly, it takes a village to keep my stress levels managed. But I would not rule out regular massages either if you can afford all or any of that kind of thing. I can help you find alternative healers in your area if you want, I have a lot of experience with that heaven knows.

In terms of diet and all of that its pretty complicated. I eat low fiber, things that are very relaxing to eat like mashed potatoes, steamed zucchini … sometimes i will dice up a marinated chicken breast and put that in the steamer as well, with some diced sweet potato and baby bok shoy. That is one of my favorite meals :slight_smile: I use Orgain or similar protein shakes mixed with oat milk or coconut milk (try to find one without guar gum or carageenan … or just make oat milk by soaking oats 3 minutes, drain, soak overnight, drain … super easy!). I also have wheatgrass powder, aloe vera juice and beetroot juice that I take a shot of every few days … Anything and everything to both get your nutrition, but also take it easy on your system!

And I take a multivitamin, melatonin supplement for sleep/relaxation, vitamin d3, and i use marijuana although i’m always looking to wean off of it, it does help with stress even though it hampers my productivity and potential for financial independence.

I drink spearmint herbal tea … peppermint is too cold! Avoid all spicy and deep fried foods, even things like black pepper, ginger and cinnamon will send your system into a tizzy in my experience.

any of this resonating? If you want someone to meditate with, you can always send me a message. I actually do this kind of work professionally, but since you’re a PSC fam, I’d be happy to do free meditation lessons for you via skype or whatever if you want