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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Just relating my experience of P.S.C

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.

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

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

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

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.

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.

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.

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