There is little that is more frustrating than feeling well for several weeks and starting to become hopeful, and then once again experiencing pain. I thought that just maybe I was in the clear for a bit. A nice little reprieve from the belly aches that left me in a fetal position on the bed. On Tuesday night (the same Tuesday where I proclaimed to my GI I was feeling “great!”) the pain came back. Each night since it’s been there, taunting me, bullying me and reminding me what it feels like to be sick.
And every night it's a series of the same questions and half-answers: "If I go on Remicade will I be able to afford it if something happens with our insurance coverage? (As one doc put it, "Remicade is hideously expensive.") What happens when we want to have a kid and I can't stop the medication?" And then there's surgery, which, frankly, often only buys you so much time until you'll need another surgery.
Remicade is a biologic infusion drug. You get it in two-hour IV infusions at your doctor's office and the drug shuts down your hyper immune system. If you stop the drug, you often cannot take it up again as your body produces antibodies to it and rejects it. There has been no long-term testing on Remicade, and certainly none on pregnant women.
Resectioning surgery is when they remove a diseased part of your intestine (anywhere from five or six inches to several feet) and attach the two good ends back together. Crohn's sufferers often experience problems at the resection site (infection and inflammation) and often need repeat surgeries. This becomes a real problem when you run low on bowel.
So what can you do? I choose the very un-heroic path and wallow in a sad bath of self-pity. "What about my MBA?! How can I live with this for 60 more years? What will work think? What if we can't have kids? What if we do have a kid and he or she has Crohn's?!" and all of that.
I have come to the following conclusion: I do not have best disposition for a chronic disease. I can't "look on the bright side." I worry. I'm sometimes morose. I eat all the wrong things (delicious Chinese last night - chicken with string beans and house lo mein - cinnamon-y oatmeal raisin cookies Matt made today). A true Crohnsie would eat like a carbo-loading good girl: all low-residual boring foods and all a shade of white or brown (rice, potatoes, pasta, bread).
So Matt and I are deciding what route to take: go for the super-duper meds with scary side-effects (cancer?!) even though I want to have a child in the future or go for the surgery (which will hopefully buy me a few years -- uh em, child-bearing years -- before it all goes to shit again), and then try the souped-up medication. I don't want a gaggle of kids (don't get me started on that mother of 14 in California) - just one. But - I'm barely 27. I don't think it's selfish to put me first, instead of a child who isn't even here. But the wrestling with it never ends. And there is no right decision, nor wrong one. There are only choices fraught with uneasiness.