I am a 37 year old male diagnosed with UC about 5 years ago. Currently on Salofalk and 5mg of Prednisone. Supplements being taken include multi-vitamin, Calcium, Vit D and probiotic.
Some more about me:
I am a non-emotional lawyer from Toronto (my wife describes me as emotionally dead).
At the tail end of a flare up and almost all cleared up!
I Have UC and Now PSC Too!
I was diagnosed with UC about 5 years ago. I switched Gastros about 2 years ago as my initial Gastro was not available and didn’t seem to care much. I see my new Gastro about every 2 months or so. His office is conveniently located 10 minutes away from my office by foot.
My latest flare up started about 16 months ago. I went through two rounds of Prednisone, tapering down to 5mg. As well, my Gastro switched me from Asacol to Salofalk (both anti-inflamatories on the same level) to try and bring me over the finish line. I am at the very end of it and almost all cleared up. I have had 1 colonoscopy and multiple sygmonoscopies (non-sedated, so I am wide awake and feel it all!!) during this flare up. I am almost 100% clear now, which is why my Prednisone intake is only 5mg. My doc has said that I could even continue as is no problem without being 100% clear.
However, my most recent blood tests showed that I most likely also have Primary Sclerosis Cholangitis (PSC), a disease of the liver. People with UC don’t necessarily develop PSC, but people with PSC often also have UC. Like UC, PSC is a disease with no cure and no real treatment. Do any UCers out there also have PSC and, if so, do you have suggestions in terms of lifestyle, food do and don’ts, supplements etc.?
As mentioned above, I am currently on Salofalk, 500mg, and 5mg of Prednisone. Supplements being taken include a multi-vitamin, Calcium, Vit D and a probiotic. Over the past 6 months I have also changed my diet. I cut out junk, most dairy, except for anything lactose free (even though I am not lactose intolerant), the regular harsh UC foods (beans, raw fruits and veggies, corn, most alcohol, carbonated drinks) and fatty meats.
written by Zev
submitted in the colitis venting area
“Any lifestyle suggestions for UCers who also have PSC in terms of lifestyle, food, supplements? Thanks Adam. This site and FB page are absolutely wonderful. You are doing a fantastic job for the UC community.”
Thanks for sharing your story and the picture of your fam!
So, I did some searches through the search box at the bottom of the page(feel free to do some more on any topic whenever you like BTW), and I definitely remember a few stories from others over the years who have mentioned their PSC. So I wanted to pass you some of the links to these stories, and please make sure to read through some of the comments at the bottom of these postings as well, since there’s quite a few nuggets of good info within:
- December 2011, another UC’er wrote this story: https://www.ihaveuc.com/primary-sclerosing-cholangitis-from-colitis/
- Another story that has lots of comments talking about PSC: https://www.ihaveuc.com/raised-liver-enzymes-and-uc/
- And if you’re cool with the French Canadiens (which you should be:) here’s some more on the related topic with a doctor recommendation that may make sense to peep out if you’re ever headed to Montreal (not a bad place to take a short trip for a doc visit too right Zev:) https://www.ihaveuc.com/follow-up-regarding-raised-liver-enzymes/
As for food supplements and treatments for PSC…you know, that’s not my area of expertise what so ever. I wish I knew more about PSC, but I just don’t. If I was you, I’d take a twenty minute break from lawyering each day and search out PubMed for some of the latest and great on PSC studies. I’m sure you could find all sorts of interesting info there that might give you some breakthrough ideas.
Best of luck to you and your family Zev, good job for making it to the end of this long flare and keep us posted on how things go for you.
Don’t freeze your heebe geebees off up there, springs on the way bud,
(and PSC’ers, do you have some tips for Zev? hook a brother up, any ideas on what’s helping your PSC??)