Thank you all for your posts. Still in hospital. Just on IV fluids still. They said I’ll be able to drink liquids tomorrow and possibly discharged Friday. I hope that the balloon he put in one of my ducts doesn’t break. I’m scared. I’m in less pain tonight so that’s good. Hope you are all doing well.
Idoc,
FYI, the balloon dilation, they don’t leave the balloon in, it’s just used to stretch the duct to allow the bile to flow, so no worries there 
Mark
Ok good! Haha 
Hi everyone. So enzymes are coming down except Alkaline phosphatase went up a little but doctor doesn’t seem worried about that. She said since I’m not in pain today I can be discharged tomorrow. I’m planning on going on a paleo anti inflammatory diet. Any luck any of you had with this? Also do enzymes ever get normal with PSC or PSC/AIH overlap? Does anyone out there have PSC, AIH and UC? We’ll see if I have AIH too. My UC is in remission. I had AIH which was in remission for 13 years. So higher enzyme might be due to PSC or PSC/AIH overlap.
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Hi Idoc. My partner was diagnosed in early 2016. He is 36 now. Ever since he was diagnosed we changed our diet SIGNIFICANTLY. Of course we went through an extensive “trial and error” cycle until we reached to a personalized diet that he is fine with.
To begin with I strongly suggest to read the book “an autoimmune solution” by Dr. Amy Myers who is a medical doctor herself and who also suffered from an autoimmune disease.
- We completely got rid of diary, gluten and alcohol
- Any kind of bread, cookies, chocolate eventhough gluten free
- Only organic food
- No sugar, honey, maple syrup, etc.
- A high dose of probiotics every day
- No rice (any kind), no seeds (any kind!) and no nuts!
- At lease a cup of vegetable smoothie every day
Please note that, in my opinion, there is no specific diet that is applicable to all people with PSC. I have read posts on this forum about people who can have nuts, for example, without any issues while my partner is allergic to them (no obvious allergic signs only his enzymes go up!). So I think the best way is to try and see what works for you. Having said that, I strongly believe any diary and gluten is absolutely not recommended for people with PSC.
I wish you the best of luck. You seem to be a wonderful girl and I’m sure things go be much better. And by the way, my partner and I were dating for only 4 months when he was diagnosed. Just to show that there are people out there who aren’t affected by these matters
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Sorry meant to say dairy! 
My son (12) has UC and overlap, but we got the diagnosis in March , new to this, and I understand it can act quite differently in children. But: May 9th, his test showed GT value 467 I think. Around there. And calprotectin 1150, around there at least. (we are struggling to taper prednisolon, we are about to get to 15 mg Sunday.) anyway, after these bad news we decided to try no gluten, reduced amount gluten free substitutes, and very reduced dairy. Also reduced sugar, and we cook our food from scratch. In 14 days, his GT is now 387, and calprotectin is 360. New tests in 14 days, and we’ll keep it up and hope for the best.
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That is great!! I have reduced gluten and dairy. I’ll be getting blood work done in 3 weeks. I’ll keep you posted!
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Just chiming in here. I have followed roughly the same diet as tala suggested. No alcohol at all for 24 months, no gluten, very limited dairy, plenty of veg and fruit, oats every morning for breakfast. No junk food ever. 1 cup of turmeric and black pepper tea every night before bed. A ton of water. Yoga, breathing exercises and mindfulness. My lft’s are only mildly elevated and even though I still have the disease I have never felt better. I have never had any of the major symptoms with my small duct psc. My Hepatologist said stick to a good diet. It won’t change the psc but it gives your body the best chance of managing it. I think zero alcohol is important. I used to drink a lot but when I got the diagnosis I stopped.
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I have all 3 just like you. UC when I was a baby…AIH 11, and PSC 2 months ago… I am 21 and getting a colectomy soon as well
Wow Nlapeyre! Good luck with the surgery! Prayers and thoughts with you! You’ll do great!
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I had colectomy around your age as well, 15 years ago.
Message me if you have questions.
E
As someone who’s recently been battling with trying to not drink or definitely lesson. Last months blood work when I was regularly drinking on the weekend my ALT AST were up in the 200s. After taking 2 weekends off from drinking and some very light drinking one day on a weekend my ALT and AST have dropped way down to be around 30 right in normal levels. Seeing this has really motivated to stay on this path, maybe you should keep track and see if the alcohol is affecting you that much as well.
thanks! if you ever want to vent, we have all the same diseases and im here!
Hi everyone! It had been awhile since I’ve posted on here. I’m doing really well. Have been dating a really sweet understanding guy for 10 months now who knows about my medical issues. I am on budesonide 6 g per day and cellcept 1500 mg per day so a small taper from the original 9 g per day and 2000 mg per day. I need to make sure my enzymes are normal this week for my hepatologist to taper me more. Please pray that my enzymes will still be normal like 2 weeks ago. I really would like to have a family one day and I know I cannot stay on cellcept for that to happen. I need to be off of cellcept for 2-3 months before having a family. I read prednisone can be safe during pregnancy but I would rather not be on any medication if/when I get pregnant. I am 34 years old right now. I pray that things continue going well with my enzymes and my boyfriend. I’m trying to be hopeful and I do have my strong faith in God. Hope you’re all doing well!
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Hi, Idoc. Welcome back. I wish you well on your health, your bloodwork and your boyfriend.
Jeff
Thank you my enzymes went up. 
I had blood work done yesterday. I think it’s because my other doctor switched me from Zocor or Lipitor. Hopefully that’s the reason why. So I’ll either go back to zocor or try a bile acid sequestrant. My cholesterol is normal but because my dad had a heart attack at an early age the doctor wants me on a cholesterol lowering medication for preventative measures.