Trial and Error
My diagnosis finally came in the fall of 2009 after 18 months of symptoms- a time that included graduating from college, moving to Texas, getting married, going on my honeymoon, and moving to Minnesota. Having been diagnosed with Irritable Bowel Syndrome several years before, my doctors tuned me out when I said I had a stomachache and bathroom issues. Of course I did, I had IBS. But, having had IBS through final exams every semester, I was familiar with the symptoms and positive that things had changed. The pain was sharper, more frequent, and in an entirely different place. A glass of water would send me running for the bathroom and I was dropping weight at an alarming rate. Usually weight loss is a good indicator that something is terribly wrong, but I started out overweight so my doctor’s response to my concern was “well, good for you!” One GI specialist suggested maybe I was just sad and should ‘snap out of it’; wisdom which cost me about $250.
After two colonoscopies, a small bowel follow-through x-ray, CT scan, swallowing a camera-pill, and surrendering what were surely gallons of blood for screening, I was diagnosed with mild-moderate Crohn’s Disease. Since then I have tried Bentyl, anti-spasmodics, Immodium, Asacol, Pentasa, Imuran, 6-MP, Entecort, Remicade, Cimzia and Methotrexate with varying results, though nothing has managed to keep me in remission. Sometimes the drug works for Crohn’s but causes serum-sickness or Lupus-like symptoms to the point where I can’t function on the drug or off of it.
That brings us to today: several weeks into a clinical trial and crossing my fingers and my toes that something works for what is now moderate/severe active Crohn’s Disease. Perhaps, even if this drug fails as well, the information I provide during the trial will help others who need an alternative to what is already FDA approved.
I would never have had the guts (haha) to enter this trial without my husband’s support. Rob has helped me around the house, changed his schedule so that he can drive me an hour and a half to Mayo every two weeks for my check-ups, and he tells me every day how much he loves me, in sickness and in health. My symptoms began a few months before we were married so Rob had to go on his honeymoon with a woman who could only eat rice and refused to go too far down the beach because she couldn’t maintain eye-contact with the nearest restroom. He still comforts me and shows concern each day when he asks “how are you?” and I inevitably answer “Lousy. My belly aches.” Now that is a hero.
I joined Team Challenge last year and the experience was very emotional. As I walked I thought about how the money I raised would help kids go to Camp Oasis and give patients like me access to the latest treatment news and support. Crohn’s and Colitis patients of all ages across the country (and potentially the world) will benefit from the commitment you are making to participate in Team Challenge and no matter what your connection to CCFA I guarantee July 15th will be a day you’ll always remember. On behalf of Crohnies and Colitis patients everywhere, thank you for your support and good luck!