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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Just relating my experience of P.S.C


#1

I was diagnosed in 2016. My family g.p. did some blood test because I wasn’t feeling the best just tired. My bilirubin was extremely high so he told me to go to the hospital. Fast forward a month and I was diagnosed with Cirrotic liver, p.s.c and auto immune hepititis. While in hospital I developed jaundice and the itch. I got so bad that I got sent to get assessed for a liver transplant. Oddly enough during that time my numbers all started to come down. so I got sent home because I was to healthy. Then at the time I got refered to my specialist that I am still with. AT that time my liver was tested and it was bad on the cusp of being needing to be replaced but my blood work was saying I am still healthy.

I have managed to stay healthy. My diet that I was and still am on is a low sodium(2000 mG/day) diet meaning eating at home and eating mainly whole foods, on top of taking a multi vitamin, vitamin D, Calicium, and moringa (in pill form). I manged to stay healthy till this summer. End of a August 2018, I developed ascending Colingetis. Then I was put on to Urso (haven’t really had any side effects from being on it). Then november 2018 I had pancreatitis (not fun). During that I started having diarrhea that wouldn’t stop. In december I got a colonoscopy and was diagnosed with ulcerative colitis. I am Currently on prednisone( Last Week of it) and mezevant. Currently I am health and hoping to be able to stay that. I am hoping to stay that way. I am open to any questions or help in that matter. Btw I am 33 turning 34 this yr.


#2

Having those diagnoses is a real tough load. Having one is bad enough. You’ll find a lot of members here to have two. Most common are UC and PSC, or Chrons and PSC, so I hope you can get some good advice.

I had UC in 2006, and had a j-pouch. Was diagnosed with psc in 2013, so I was lucky to not have both at the same time. I am also on Urso, with no side effects I can see.
Jeff


#3

Thanx I do appreciate it and Ido like to read other peoples experiences. for me It is Alway seeing what other people try todo to stay healthy. Right now i have been trying a herb called Moringa. I am not sure if it is the only reason I have stayed relatively symptom free. But i’m sure it has helped. I hope people can also use some ofthe little bit of experience that Ihave. Before my u C diagnosis My specialist liked using me as an example that even though I have these diseases I am still healthy and you don’t have to be gravelly ill when you are diagnosed with everything. I still hold down a physically demanding full-time job. While juggling everything else and I do realize not everyone is going to be the same… But I hope they can take something away from My experience that will help both in the short and long term


#4

Hi
I hope you will be better in near future.
What is your LFT blood numbers?


#5

my LFT numbers are normal oddly enough. Haven’t really have any issues with them it was More my bilirubin. Normal as in for a regular person without lives disease. He has me going for blood work every Mouth right now. I am actually healthy now. or as well as one can be when I am just starting to learn how to live with u.C. Which isn’t easy when you love spicy foods and coffee. But you find out those can trigger a UC flair up which so far being in one for amonth straight… was Not fun considering you Couldn’t be away from a toilet for very long.


#6

Blue,
I remember that with UC, I would get warnings of 10 , 5, 2 or 1 minutes that I needed to be on the throne. Oh, fun days.

Glad your lft’s are in good shape.


#7

Hi Bluestaff85,
I am sorry you were now diagnosed with UC. It’s nice that you know what triggers your flares though. My daughter had UC for 7 years and we could never figure out what would trigger her flares. It was weird because every big flare she had seemed to be in the fall season. Almost like a seasonal allergy. I hope you continue to feel well.


#8

yup those are always fun times. atleast I only had to experience a month of that so for.