From UC to Colectomy to J-pouch

Introduction:

I am a 40 year old male who was diagnosed with UC in 1995 during my college years. I was also diagnosed with the secondary diagnosis of Primary Sclerosing Cholangitis (PSC) in 2009.
My Symptoms:
I no longer have any UC symptoms as I underwent a total colectomy on Sept. 9, 2012. Prior to my surgery, my symptoms of urgency and diarrhea were moderately controlled on between 10-15mg of Prednisone.

My Story:

When I was first diagnosed, I was in college and didn’t think too much about it. I figured I’d take some medication (albeit for the rest of my life) but then I’d be fine and get on with my life. The initial flare had me lose 30lbs and also had me taking Asacol, Prednisone, and steroid enemas before it was under control. After that first flare, it seemed things were “normal” for quite a few years. Then the original medication seemed to stop working so I was changed to another medication which began a 10-12 year history of constantly changing medications including intermittent rounds of Prednisone, Colazol, Budesonide, enemas and rectal foams, a trial of methotrexate, eventual double doses of Remicaid, a trial of the SCD and my final result of a total colectomy on Sept. 9, 2012.

The years after the 1st medication stopped working leading up to my colectomy were not ALL bad, there were good and bad times but when I actually wrote out my entire medication history from 2007 until 2012, I was quite suprised how often I was on Prednisone even being on double doses of Remicaid. I was also fortunately never hospitalized and was able to maintain a career.

Surgery Steve

Then in late 2008, my 6 month blood work checks showed some elevated liver enzymes. By May of 2009 and after a liver biopsy, I was diagnosed with Primary Sclerosing Cholangitis (PSC) which affects approx 4% of those with UC. By August of 2009, I had been to Mayo Clinic in Rochester, MN for a second opinion which confirmed the original diagnosis. This diagnosis was much more devastating than the UC diagnosis as there is no cure or treatment for this disease and no one can tell you if or when the disease will progress (similar to UC) but if it does progress, it usually progresses slowly but eventually destroys the liver over time and also increases your risk of developing liver cancer. The good news is that there was little to no damage and/or progress and I was having no symptoms. And 3 years later, after annual monitoring, there appears to be no progress or changes related to the liver and I am still symptom free and grateful for that. But in addition to the above menti oned issues, there is a significantly increased risk for colon cancer above and beyond the already increased risk that comes with UC. After further research and discussions with my physicians and University of Chicago, I found that the chance of me developing colon cancer was about 1 in 4.

After much soul searching, researching, doctor’s appointments, and discussions with family/friends, I decided that the best course for me was to have my colon removed with plans to end up with a J-pouch. So I underwent my first surgery of a total colectomy on Sept. 9, 2012, with plans for my second surgery sometime in January, and my final surgery planned for sometime in April of 2013.

As I was researching for my surgery, I found my internet groups for colitis and colectomies, the I HAVE UC website, and also You Tube an indespensible source of information and support. They also allowed me the time I needed to wrap my head around such a major decision and get used to what my new life might be like. About 1 week before my surgery, I decided to start a You Tube channel documenting MY journey from colectomy to J-pouch in the hopes that MY story may provide the same support, education, and information that I was able to receive. You can access my story on You Tube by typing “ucandpsc” in the search bar. I never imagined that I would be traveling down this road, but I’ve found that talking about it and being a source of information for others is helping me in addition to helping others.

Where I’d like to be in 1 year:
By this time next year, I’m planning on having my ostomy taken down and living a completely UC free life with my J-pouch and no complications! :)

written by Steve

submitted in the colitis venting area
****if you’d like to watch the videos I’ve created related to my condition & surgery, here is my YouTube Channel: https://www.youtube.com/user/UCandPSC/



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12 Responses to From UC to Colectomy to J-pouch

  1. shelly September 24, 2012 at 12:17 pm #

    Steve,
    Thank you for sharing your story and I hope you’re on your way to great health. I don’t know if you’ve come across this but there is now a treatment for PSC. I have a friend whose young daughter is now in remission with this treatment and the Hepatologist in the article (Dr Cox at Stanford) is happy to speak with you and your doc over the phone about dosing etc if you decide to try it.

    Here’s the article:

    http://stanmed.stanford.edu/2011spring/article6.html

    Best of luck to you.

    • Surgery Steve
      Steve September 24, 2012 at 5:12 pm #

      Hey Shelly!
      Thanks for the info re: PSC! I will definitely be checking out that website. I know that the specialist at Mayo had talked about a drug called Urso? I think, but the research had showed that it wasn’t really effective for my type of PSC. Hopefully the Stanford article will have some better news! :)

  2. Bev September 24, 2012 at 2:41 pm #

    Way to go Steve!

    • Surgery Steve
      Steve September 24, 2012 at 5:13 pm #

      Thanks Bev! :)

  3. Blake September 27, 2012 at 10:39 am #

    Good luck Steve! I think you’re going to be happy with your decision, I know I am! I hope your getting used to your ostomy bag and starting to feel better right about now. I think you’ll be surprised how good you actually feel with the ostomy, once the pain from surgery turns off. Keep us posted.

    • Surgery Steve
      Steve September 27, 2012 at 11:17 am #

      Hey Blake! Thanks for the comments! I’ve been following your story and I’m glad to hear that your at the “end” or near the end of your journey! I’m not liking the things I hear about getting used to and “breaking-in” my jpouch when I get to that stage as the ostomy is pretty convienient…LOL…but I know I’ll get through it and after all of the adjustment with the jpouch, I’m feeling confident that I’ll have made the right decision and can hopefully put ALL of this colitis “crap” behind me!

    • Emanuel December 14, 2016 at 11:55 am #

      Blake I’m a very huge fan of ur history bro, I just got a total colectomy and going for j pouch soon

  4. Blake September 27, 2012 at 3:24 pm #

    Thanks Steve! Yeah, the first couple weeks after you get your J Pouch are pretty miserable, but the misery doesn’t last long and you notice improvements pretty quickly. But you’re right about the ostomy bag, it is convenient and you may even miss it… just for a little bit. Once I got the reversal it took me a while to adjust to not having it. I would put on my pants and reach for the bag and realize it wasn’t there, pretty cool feeling though. Good luck!

  5. Rich October 12, 2016 at 1:27 pm #

    Hi Steve I’m in the same situation as you. Although my surgeon has said that a j-pouch is not advise with PSC and giving me massive doubts to go ahead with it as I don’t like the thought of a bag the rest of my life (I’m 35).
    Has your PSC now recovered and was the j-pouch a success ? How offen do you go the toilet now and do you still have to watch what you eat and drink ?

  6. Surgery Steve
    Steve October 14, 2016 at 11:34 am #

    Hey Rich!

    Got your email!

    I guess I would start by asking your surgeon to further elaborate on why he doesn’t feel a Jpouch is advised for those w/ PSC?

    My GI and Hepatologist didn’t have an issue with it and actually said IF I was going to go through with it, it would be better to do NOW as if I had issues with my liver later, I might not be able to have a Jpouch constructed. I have not heard nor read about any contraindications to have a Jpouch when you have PSC. Although I HAVE HEARD (and I also have) a lot of patient’s w/ PSC do tend to develop chronic pouchitis which needs to be managed.

    My PSC has basically not progressed since I was first diagnosed in 2009.

    And I DO feel the Jpouch was a success. I DO have chronic pouchitis (which can be common for those w/ PSC) but it is currently managed by daily antibiotics and I recently started a new IV drug called Entyvio to help w/ plans of getting off of the antibiotic.

    I go to the bathroom about 6-8x/24 hour period. That includes 1-2x/ during the night.

    NO leakage or urgency.

    I DO tend to watch what/how I eat/drink but I have no real restrictions.

    Let me know if you have any other questions!

    Not sure where you’re located but we could also chat via phone if you’d like?

    Steve :)

  7. Emanuel December 14, 2016 at 11:59 am #

    Steve what can I say man, i have followed ur and blakes history and man!!!! How brave and encourages are u guys.
    My best wishes to u and hope u r doing well
    I’m going trough the same it’s been hard for me to cope with the bag but let’s not loose hope man, how do we exchange emails man? Hang right u a hero

  8. Tammy Ford July 10, 2017 at 4:17 am #

    My mane is Tammy and I was diagnosed with low grade dysplasia . I am terrified and honestly didn’t really understand my disease that well all these years . I am the mother of 4 kids and a yoga instructor : I have had flare ups over the years but quick rounds of prednisone did the trick . I am being recommended for a comectomy . I am terrified : I am googling it formation and trying to wrap my head around the.surgery and life style change . Bottom line is I want to be here for my kids . Do people love a long life after colon removal ? Does the disease go elsewhere ? All your stories are inspiring .

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