On Friday night I went to a barbecue, one of the only social functions I had attended in several weeks. I was excited to have enough energy to accompany Ron. I ate at home, went to the park and hung around watching everyone else eat, then threw a Frisbee back and forth with my good friend Josh.
I wanted to keep throwing the Frisbee forever. The air was cool and light, and here was something I could participate in, something physical and social where I wasn’t an outsider. I had quit playing the team sport, ultimate Frisbee, a couple years ago: my knees had developed chronic, inexplicable pain that became severe and slowed me down. But years later I still had my throws, my trick catches and flashy forehand, and I loved the familiar snap of my wrist and the soft whipping of my fingers as I caught the disc.
Josh was one of the only other people I knew with colitis. I’d been excited to talk to him when I was first diagnosed a couple months earlier, but I quickly discovered that his experience had been the opposite of mine. He’d had the disease since he was five years old. His mom had it too. Since he grew up with it, he never questioned it, especially since it seemed obviously genetic. He never wondered what caused it. He just took the prescribed medicine–immunosuppressants–almost every day. Whenever he ran out or stopped taking it, his colitis flared up, but then he just zapped it with a couple weeks of prednisone and it went away again. He never thought about it.
Josh had also never changed his diet. He ate Wisconsin’s deep-fried cheese curds and grilled brats with gusto, drank beer, and cooked himself vats of chili with delicious corn bread. Once, at a gas station, he and I had gotten excited to split a package of Hostess cupcakes. Josh lived a completely normal, carefree lifestyle, except for his meds.
As we threw, he said Ron had been keeping him up to date on my illness. “Yeah,” I laughed, snapping the Frisbee back to him. “Ron said you were like, ‘Dude, why doesn’t she just take the prednisone?'”
Josh laughed. He is a self-deprecating, earnest guy. “Well, sort of. Honestly, okay, yeah. Why don’t you?” He threw the disc back.
I had trouble explaining at first. I fumbled for the right words: Well, I just learned I had this disease. It might be normal to you, but it’s a shock to me. I want to figure it out, because I’ve been healthy my whole life until now. And mine’s not genetic–no one in my family has inflammatory bowel disease. Something gave me this, probably something I was doing or something I came into contact with. I want to know what that something is, so I can stop the colitis from flaring up in the future.
But it’s your last summer in Madison, Josh said. You’re missing out on so much!
I know, I answered. I’m so tired, and I feel so lonely with my diet sometimes. But… I paused, holding the Frisbee and thinking. “For me, I guess it all boils down to wanting to get pregnant.”
He raised his eyebrows, giving a slow nod of understanding. “I forgot about that.”
“I just want to get pregnant as soon as possible. I don’t feel like I have years to wait, to figure this disease out. Because I want to know how I can stay in remission, and prevent a flare-up, during pregnancy.”
I told him how at first, doctors said I could get pregnant with colitis. When I’d emailed my first doctor asking about this from Spain, he wrote back that there should not be any thing [sic] to worry about as far as becoming pregnant is concerned. This illness doesn’t adversely affect pregnancy or health of the child. So, have a great trip and let us know how things go.
Since I was so uncomfortable on our trip, I decided to wait anyway. When I got back I asked Carrie, my second doctor, the same question, and she said the same thing. “It should be fine to get pregnant, and the meds you’re on should be totally safe for a pregnancy. They’ve been tested and have a good rating for safety.”
I was reassured, until a few days later when I received my first colitis books from the library. They said that pregnancy during a flare-up increases risks of low birth rate, miscarriage, and anemia on the part of the mother. They also said if you get pregnant during a flare-up, you are 80% likely to remain in that flare-up for the duration of the pregnancy, while if you get pregnant during remission, you are 80% likely to remain in remission.
It was another instance that made me stop trusting my doctors. They had neglected to advise me on this crucial order of priorities: remission first, if possible, then pregnancy.
(They did agree with me, though, about my weight. A year and a half ago, when I’d spoken with a nurse about getting pregnant, she’d recommended I gain weight first. I had succeeded in gaining almost 10 lbs, but since diagnosis my weight had been slipping away again. Now I weighed even less than at that appointment. Because I’m skinny, I needed to gain weight for a healthy pregnancy. And because I now had colitis, in my case, gaining weight meant that I basically did need to achieve remission. Here’s the math: Colitis + pregnancy = generally okay, BUT colitis + incredibly skinny + pregnancy = much riskier.)
A few weeks after my conversation with Carrie, I read a passage in Moises Velasquez-Manoff’s An Epidemic of Absence that sent my heart plummeting. According to a Johns Hopkins survey of families with autistic children:
The more autoimmune disorders present in a family, the greater the chances that someone would also have autism. If one family member had an autoimmune disorder, the chances [of autism in the family] were nearly double. …Mom’s autoimmune disease mattered most. If a mother had an autoimmune disorder, the chances of her child having autism increased nearly ninefold.
…The most authoritative study to date comes from Denmark. Scientists there parsed the records of all children born between 1993 and 2004–689,000 births in total. Doctors diagnosed more than 3,300 with autism spectrum disorder. Mothers of autistic children, the scientists found, tended to have more rheumatoid arthritis and celiac disease than controls. The former increased the odds of autism by over two-thirds; the latter tripled it.
Was I now as much as nine times more likely to have an autistic child because I had an autoimmune disease? That felt like hyperbole somehow. Velasquez-Manoff’s book covers such new science, at such a breathtaking pace, that I had to take what I read with a generous dash of skepticism.
Still, it seemed that the safest pregnancy would be one where my body was not inflamed. My own inflammation could trigger inflammation in my unborn child. If I could get myself into remission, then theoretically there wouldn’t be much inflammation in my body.
The importance of remission during pregnancy didn’t fully answer Josh’s question about prednisone. If remission was so urgent, why not just take it, in case it would help? Then I could get pregnant sooner. I supposed the truest answer was my first one. I wanted to know why I had flare-ups, for my long term health and for a healthy pregnancy. I wanted to understand my disease, and I could only do that by experimenting with diet and lifestyle and seeing how my body responded. I wanted to be, as much as possible, the master of my own health. That, to me, was worth a season of discomfort. Even now, even if it meant missing out on our precious last few months with our friends. It was heart-wrenching, but it felt necessary.