pink, my dear

a Midwestern, thirtysomething, working mama's blog about life, food, motherhood, Ulcerative Colitis, ostomy, and other things

As Great-Grandmother Libb says, "I like any color so long as it's pink."

Saturday, July 17, 2010

UC--there's something you may not (want to) know about me

A warning for the squeamish-- this post contains descriptions of illness and bodily function. If you can't handle that, don't read it.

In September 2009, I was diagnosed with an autoimmune condition called ulcerative colitis (UC). If you're interested, there is plenty of credible information about UC at the Crohn's and Colitis Foundation's website (www.ccfa.org) and also on Web MD. Basically, my immune system attacks my colon for some yet-to-be-determined reason, and when I am not in remission I live with chronic, urgent, bloody diarrhea. I'm talking dashing to the bathroom 20 to 25 times a day (and in the middle of the night). In addition to needing to be close to a bathroom at all times during a flare, there's also fatigue, cramping, and some pretty uncomfortable inflammation in my colon which leaves me unable to do much physical activity.

In my case, the UC likely started after giving birth to my son in June, 2008. Apparently, this is not uncommon, as the immune system is suppressed during pregnancy to prevent rejection of the fetus, and it comes back 'on-line' again once the baby is born. I had some digestion changes, as well as some soreness and bleeding, for a while after the initial postpartum period ended, and I even saw a proctologist in November, 2008, who diagnosed an anal fissure (basically just a small tear that causes bleeding) and told me to increase fiber and that it would heal eventually. It took almost another year for my disease to progress and a doctor to finally send me to a specialist for a colonoscopy after hearing of my ongoing problems with urgent, frequent, and increasingly bloody diarrhea.

The course of my illness has had a quick progression. Since December, I have had three five-week courses of Prednisone, the only drug so far to control my flares at all. Prednisone is a powerful drug with a lot of really unpleasant side effects. Plus, as soon as that last dose of it leaves my body, my symptoms come right back. My most recent flare has progressed over the last eight weeks or so without much control as I tried my first regimen of a self-injectable medication called Humira. Previous to this, I have been on Asacol and Lialda, plus a brief stint on Canasa, all with no success. If my latest course of treatment (see next post) is not effective, I can try to take part in some clinical trials for medicines up for approval soon, or I can have my colon removed. So, that's where I am.

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