I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, March 17, 2012

The Backstory

Of all the diseases and health conditions out there, this is probably one of the grossest.   If I had something dramatic and wasting like lupus or cancer, people could feel sorry for me with style.  Instead, they look at me and think "poop disease".  Not a very romantic condition, let me assure you.  (Believe it or not, though, it has actually come up on more than one first date; talk about a first impression.)

I have a long list of illnesses (see them here), but the first main event was when I was diagnosed with ulcerative colitis (UC) at age fifteen.  For those who don't know, it is a chronic inflammatory disease of the colon that causes the inside of the intestinal wall to become covered in tiny bleeding ulcers.  It's hallmark symptoms are abdominal pain, cramping, diarrhea, mucous, blood, and gas.  (These symptoms - along with my first colonoscopy - did wonders for my confidence and self-esteem as young teenager, let me tell you.)  It can range anywhere from mild to severe and can affect anywhere from a few inches to all five feet of the large intestine.   I have actually been very lucky in that most of my life my disease for the most part has remained fairly mild and pretty easily controlled through medication.  Only the bottom twelve inches of my gut were affected.

About a year and a half ago, however, I encountered some major life-changes.  I left southern California to settle up here in the bay area.  I ended up getting a full-time teaching job that was very stressful (teaching seven grade-levels in one day at a school for behaviorally challenged kids) and that required me to go back to school full time at night.  I did not have time to eat or sleep much less grocery shop or cook.  I basically lived on fast food.  Needless to say, by the end of that school year my UC was out of control.  When I went in for a colonoscopy in May of 2011, the doctor found that the UC had spread to my entire colon, now making my diagnosis "severe pancolitis."  This was the first time in my life that the disease took charge.

My condition was so bad that I had to take a medical leave of absence from work during the last month of the school year.  I was in severe pain every hour and rushing/hobbling to the toilet 20-25 times a day.  I stopped eating (too painful) and lived off of broth and apple juice, which did not really even get absorbed properly since my colon was non-functional.  I was severely malnourished and dehydrated and losing a huge amount of blood every minute of every day.  All this caused me to be too weak to get out of bed for about a full month.

My standard tried-and-true prescription drugs that have been with me for seventeen years (all mesalamine variations) were no match for the disease I was now facing.  However, with the use of prednisone (this is a whole other issue in and of itself which I will go into in a later post), I was able to slowly get things under control, and I spent the summer healing.  About three weeks after coming off of prednisone, though, my symptoms returned, causing me to have to go back on it.  I tried going off of it again this last winter, and again, the symptoms returned.  I am what the doctors call "prednisone dependent."  Since it is such a damaging drug, no doctor in their right mind will recommend prednisone for long-term treatment, which only leaves one type of drug therapy left for me: immunosuppressants.


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4 comments:

  1. I found your blog on healingwell.com. Your story really hits close to home. Thought I would share my blog with you in hopes that it might be an encouragement! - India Werner
    http://wherefaithbegins.wordpress.com/2012/08/27/where-faith-begins-2/

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