On Wednesday ulcerative colitis won. I was crying in the car. I was crying in the hallway at work. I was crying in the car on the way home from my doctor’s visit. I was crying on Marc’s shoulder. On Wednesday it all just became too much. Too much of feeling rotten and not feeling like myself. Too much of not knowing. Too many unanswered questions. Too many bad days and not enough good days.
Today is a little bit better. I still feel rotten physically, emotionally and mentally. I feel like ulcerative colitis has become an unstoppable train and no one knows how to slow it down. I can’t get off this train but I’d like to get back to where I was five months ago.
Now, I just wait. The new drug, Entyvio, has knocked down the ulcerative colitis symptoms but the side effects of this drug are not any better. There is nothing really to be done about these side effects – apparently less than 10% of the people in a two-year trial of Entyvio reported the side effects I’m getting.
My doctor has agreed to arrange a surgery consult for me. It will likely be a year-long wait until I can talk to a surgeon. Until then, I keep taking Entyvio and deal with constant nausea, fatigue, headaches, stomach pains, chest pains and a general feeling of unwellness.
So that’s that. I don’t have much else to say. I really don’t have anything positive or uplifting to say. I’m going to continue going to work, riding my bike, and doing everything else I enjoy. Because after all, life is for the living.