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.
It just really sucks… All of it, the medicine almost as much as the colitis itself. And especially that waiting time, I’m shocked about it and it leave me speechless…
The waiting time is frustrating but this is really because now that the medication is “working”, this surgery is considered elective surgery. If I’d decided 6 weeks ago to have the surgery and not try the drug, the wait wouldn’t be as long. Frustrating as it is, I understand that there are people who are very ill right now who need this surgery more than I do right now.
I’m very sorry to read you’re feeling this way. I hope that you can find respite and joy every day. You say you don’t have anything uplifting to say, but your last two sentences are just that.
Thanks Rob. Admittedly I’ve had many rocky days lately but as you say there is joy in every day. Yesterday being out riding around in the rain for a couple of laps of the ‘cross race was actually quite glorious. Sometimes it’s easy to neglect to see the greatness when things are tough but just opening the newspaper these days seems to help be a potent reminder of the lucky life I do have. (Really thrilled that your boys are taking to bicycles so much – must be super to have them enjoying the sport as much as you and your wife.)
So sorry to read of this continued ill health. I am shocked too that it will be such a long wait to see the surgeon; it just should not be that way. Sympathetic hugs, Vicki.
Thanks very much Margaret. The wait is surprising but I understand the realities of the situation – this is now an elective surgery (because the medication is working (side effects aside)) and there are many people in a much more urgent situation than I am.