Posted 6/25/2011 7:09 PM (GMT -6)
I have struggled with this myself. Unfortunately, the disease is such that sometimes, you just have no choice. My bad flares get bad so quickly and I lose so much blood that within a couple of weeks tops, I am in the hospital and needing or nearing needing transfusions. They don't give me an option of IV steroids when that happens. I am trying to keep things more even keeled now through diet, stress reduction and avoiding antibiotics, but it is just hard to know what the future will hold-and the "typical" maintenance drugs have not been enough for me. My GI wanted me to try the immunosuppressants, but I got so sick so fast that I did not have time to try them, since they take months to kick in and pred isn't enough to induce remission for me in those instances. There was just no way I could continue to lose that much blood everyday waiting to see if the meds worked.
Sure, I could opt for surgery. But I am not in a place in my life where that makes sense. And yes, there are risks involved with the biologics that I have taken and am on, but there is risk to a lot of the things I do and am exposed to in my life, and this one is a calculated one that for me is worth it. Truthfully, my remissions on biologics are better than post surgery results, from all of the accounts I have read. I know they are buying me time, but for right now that is what I want and need. I imagine that unless huge advances are made, I will eventually be having surgery, but given where I am in my life (2 young children and another on the way), the longer I can avoid it, the better. I HAVE to think about the here and now since I am there caregiver, and my husband works long days with a 2.5+hour commute each day. It isn't that I don't care about what will happen to me in the future, but I need to be here and well for these children right now.
Pred is one that I hope never to be on again. But unfortunately, it too is a necessary evil for some people with this disease. It truly depends on the individual.
I think it boils down to how sick you are (this makes a huge difference, honestly.), what you are willing to do in that moment to get better, how the medications affect you (for example, I have HORRIBLE side effects from pred, but non of note from biologics, aside from future risk), and what other factors are involved in your life that affect your decision.
Needless to say, it is highly personal and individual. There never has been, nor will there probably ever be, one answer for everyone.