Many of you may know that after much suffering in 2014, I was diagnosed with Ulcerative Colitis (UC). Like Crohn’s disease, UC is an Inflammatory Bowel Disease (IBD) (not to be confused with IBS, which does NOT cause inflammation, ulcers, or damage to the bowel). UC is incurable and there is no “one-size-fits-all” treatment plan that works for everyone. UC is an autoimmune disease in which the immune system mistakenly attacks the lining of the colon (large intestine), causing inflammation and ulceration.
In the fall of 2014, I was hospitalized, diagnosed with UC, and started on a drug called Remicade, an IV medicine. I missed two months of work that fall. By the spring of 2015, the Remicade no longer worked. I started on another IV medicine, Entyvio. It never worked. Once again, in the fall of 2015, I wound up bed-ridden, missed two months of work, and started on Humira, an at-home injection.
Now, fast-forward to the spring of 2017 at which time I began experiencing UC symptoms once again. My “maintenance” meds include sulfasalazine and azathioprine, in addition to Humira. Symptoms have progressed the last few months. Specialized blood tests show that the azathioprine isn’t showing up in my system in adequate amounts, I’m waiting on bloodwork that will measure the Humira (adalimumab) level in my blood (though we’ve already increased the frequency), and the doctor has put me on a course of prednisone, a drug with many side effects (night sweats and insomnia) which are easily outweighed by the benefits it provides during a UC flare… namely the quelling of bathroom urges so you can leave your home and allegedly it helps lessen inflammation.
Periods of being symptom-free are referred to as remission. Since I’ve blown through three big-time meds and never truly been in remission, Dr. Stephen Paul has referred me to a specialist at the University of Chicago. Tomorrow, I will meet Dr. Atsushi Sakuraba of the U of Chicago Gastroenterology Department to determine what course of action we try next? Another drug? Or is it time to consider surgical removal of my colon?
I feel better already, just having a plan in place provides some peace of mind! I guess the unknown of where we go from here was providing more mental anguish than a realized.
Here’s a blog post from someone who reminds me a bit of myself - an IBD-inflicted runner.
