I Have UC and Now PSC Too!

Zev with his wife and kids

Zev with his wife and kids

Intro:

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).

Symptoms:

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

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

Ask Adam:

“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.”

Hey Zev,

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:

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,

Adam

(and PSC’ers, do you have some tips for Zev?  hook a brother up, any ideas on what’s helping your PSC??)




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5 Responses to I Have UC and Now PSC Too!

  1. Wendy Monteiro March 3, 2014 at 6:51 pm #

    Hi there, my name is Wendy, I’m the mother of an 11 year old that has been diagnosed mostly recently with UC (January 2014). We have successfully managed to get her out of a flare by using the SCD, which I highly recommend. We were able to see improvement within a couple of days, we have had ups and downs but were quickly able to pin point what caused the downs. In 2008 she was also diagnosed with PSC, she had VERY high liver enzymes, bloody diarrhea (for an extended period of time) as well as IBD. When we got the PSC diagnosis I was 9 months pregnant with my second child, her GI told me my daughter had 10 years to live. REALLY! I promptly took my daughter to a Natural Path dr. (somewhat freaking out that I was having a baby in less than a week and my other baby could be gone in 10 years). Once we were able to stop the autoimmune response, calm her gut down, and balance out the gut bacteria her liver enzymes returned to normal. This was ALL guided by the Natural Path very carefully. We also had the “gold standard” test done to confirm PSC which was a test called ERCP and a liver biopsy (at age 5). We have been PSC free since 2008 her GI’s exact words have been her liver numbers are pristine, there isn’t a medication in the world that could make them better than this.

    If I could give you advice I would tell you don’t be afraid to look outside the box and seek the advice of a natural dr. We looked at absolutely everything including extensive allergy testing that isn’t available through mainstream medicine. I can say 100% if we didn’t look outside the box we would not be where we are today. At the time that I was facing this devastating diagnosis for my child my natural path said to me that she once had a patient with liver disease that had 3 weeks to live, she was so sick she had to go to the patient to treat her. That same patient has still sees her over 10 years later and reminds me that mainstream gave her 3 weeks to live. I know it hard with a job and a family to look at everything. For me as a mother I wouldn’t accept a diagnosis of UC, Chron’s or PSC. I will never accept them and I will always try to find an approach that is much more comfortable for me and my family.

    I hope you find your answers soon, and I hope this gives you hope.

    Wendu

    • bev March 3, 2014 at 10:43 pm #

      Wow….fantastic post Wendy.

      I agree. We do not and should not have to accept any diagnosis as law. We have the power to change ourselves, and I have found that lifestyle and natural are the only ways to do it…for me at least. Meds have done nothing but hurt me in the past. I try and stay clear of them if at all possible.

      Thank you for this:)

    • Ariela November 3, 2016 at 7:30 am #

      Hi Wendy I have psc too. could you tell me please what helped your doughter with psc? what did she eat? thanks

  2. k March 10, 2014 at 5:31 pm #

    Hello Zev,
    There is a guy in Chicago who has put about 40 YouTube videos up over the last year and a half at: ucandpsc. He had both illnesses and has had the 3 surgeries to create a j pouch. That journey is what most of the videos are about, but some mention his psc and one video last autumn was devoted to the psc.
    He is very detailed and open about his surgeries and his physical/emotional responses.
    I wish you all the best as you move forward.

  3. Adam
    Adam February 24, 2015 at 11:33 pm #

    Hey Zev,

    I just recently noticed this study was published regarding PSC and UC, might be interesting for you to take a look at:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4324808/

    Rapid Progression of Primary Sclerosing Cholangitis Complicated with Ulcerative Colitis

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