Happy Colon

Gut Feelings

Update

Last night, I woke up once every hour to use the bathroom. Hopefully that’s a one-time thing. Not fun.

Tomorrow I’m getting a blood transfusion. My hemoglobin and hematocrit levels aren’t terrible, but because they’ve dropped, because I’m still bleeding, and because I’ve been feeling exhausted this past week, my doctor recommended it. I’m excited for it – they say you get quite the energy boost from transfusions, and right away.

My dad is bringing me into the hospital for it – he’s my chauffeur now that school has started for my mom. After the appointment we’ll drive the few blocks over to the apartment that I sublet for July and August to get my furniture I had left for the subletter – bed frame, desk, shelves, and nightstand. Station wagon get ready!

The other big update is that I’m going to participate in a clinical trial for a drug that’s being tested for ulcerative colitis. The drug is called oral OKT3 and the trial is run by Mass General Hospital. I’ll be meeting with the research coordinator sometime soon to make sure I qualify. The good thing about this drug is that it’s not an immunosuppressant to the extent that 6MP and Remicade are, and it’s taken orally, not intravenously. OKT3 has been used intravenously for people whose immune systems reject organ transplants, and for unknown reasons, people seem to get the benefits but not the side effects of the drug when they take it orally. Because colitis is an autoimmune disease, it could possibly work for colitis patients. So far, it’s only been tested in Israel, and the MGH trial just began – I’ll be the fourth participant in America! Of the other three participants, one saw significant improvement, one did not, and the other just started the trial. I’m hoping to see improvement, but even if I do, I’ll only be on the drug for 30 days. Maybe that will just be the boost I need, though.

I’m pretty sick of being sick.

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3 comments on “Update

  1. atmeuse28
    September 4, 2011

    the new drug sounds interesting…did they say what the results were in israel? how are you feeling now? update please!!! love love

  2. rebecca
    October 15, 2011

    Totally got the email/name reversed. Please don’t approve the previous comment :)

    Anyway, what happened with the trial? Have you noticed a difference?

    • clementineseason
      October 20, 2011

      I ended up holding off on the trial. I started seeing a nutritionist who recommended new supplements and more probiotics, and I couldn’t start both the trial and new supplement regimen at the same time. The trial isn’t off the table but I’ve seen a lot of improvement with the nutritionist’s recommendations and am hoping I won’t have to do it! (I talk about this decision in another post: https://happycolon.wordpress.com/2011/09/10/updates )

      Do you also have UC?

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This entry was posted on August 29, 2011 by in Health/Life Update and tagged , , .

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