It is a beautiful fall day in September 2010 and I am diagnosed with Crohn’s at the age of 20. Thank goodness Google is already around otherwise I would have no idea what the hell the disease is. I immediately (procrastinate) and find a gastroenterologist a few weeks later. He puts me on Entocort and Pentasa, tells me to keep living my life as I am, and never weighs me once during the 4 months I see him.
I realize things aren’t going well when his office assistant tells me I looked like Miley Cyrus (I don’t) and I’ve lost 30 pounds in 4 months. I look great and can wear as many crop tops as I want, but I am sleeping so much I quit my job and am barely hanging on in school. I rarely see my friends, and leaving my bed, let alone the house is an ordeal of epic proportions. I find a new GI who gives me a proper colonoscopy, discovers I have 90% blockage in my terminal ilium, and need surgery because I am beyond the point of reversing the damage even with heavy duty medicine.
So in April 2011, I have surgery to remove 8 inches of my small intestine, repair a fistula between my intestine and bladder (OMG ouch, people!), and remove an abscess that can physically be seen protruding from my skinny lil’ belly. I get my life back.
I graduate from college in 2012, move to LA to work in the ‘biz, and live pretty normally other than stabbing (injecting) myself three times a month with Cimzia and Vitamin B12 to keep the disease under control. I eat almost anything I want (except seeds and nuts), I indulge in the occasional cheeseburger, and I even drink alcohol. Having a chronic disease never seemed so normal!
Around Thanksgiving 2015 I realize that I am not feeling too hot anymore. I had a stressful year of work (the glitz and glamour of Hollywood are taking a toll on me) and my honeymoon years on Cimzia are over because my body built up antibodies to prevent the medicine from doin’ its thang. I schedule a colonoscopy for the first week of January 2016 because I enjoy stressing about it through the entire holiday season. I am put on Prednisone which turns me into an emotional monster with slightly more normal bowel function.
The colonoscopy confirms my doctor’s suspicions that the disease is back in top form, and I begin taking Humira. Luckily, as I said before, I am a rare talent in the art of stabbing (injecting) myself with syringes and pens. I taper off the Prednisone as the Humira starts to take effect after a couple months. In March I add to the fun and begin taking Mercaptopurine to prevent the build up of antibodies this time around. As of May 2016 things are looking good, but I think I can do more to help myself with food, and I begin an Elimination Diet to find out what my sensitive little body can and can’t tolerate.
So there it is! My journey with Crohn’s up until the birth of this blog. Feel free to follow along as I figure out how to keep the disease cool and stay cool myself.