This week I am celebrating (?) my Diagnosiversary, one year after having been diagnosed with Crohn’s disease. Yesterday I wrote about the day before the tests, and the story concludes here – sort of.
“Don’t worry, it’s just like falling asleep.” That’s what I’d been told about the process of sedation, which was the one element of my medical tests that had me nervous one year ago today. Aside from one friend who told me “it’s perfectly normal to think you’re going to die” when you’re being put under, everyone else had consoled me with the thought of a nice nap.
What they don’t tell you is that waking up is not as easy as falling asleep. Maybe the standard line should be “don’t worry, it’s just like falling asleep on Valium”. When my eyes fluttered open in the recovery area after having pictures taken of almost every area of my digestive tract, I was majorly confused. Scratch that, I was majorly stoned.
I like and trust my GI doctor. Compared to the lame suggestions made my other doctors about how to deal with the chronic vomiting I’d been experiencing, her utterances of confidence made me sure that she could figure out what was going on. But no amount of admiration could have made it any easier when she stood over my hospital bed and announced a diagnosis.
“We found Crohn’s disease”. In retrospect, it’s better that my doped-up brain wasn’t connected to my mouth yet, because all I could think was WHAT THE BLEEP? I hadn’t even known that was one of the options. Everything I’d read about Crohn’s didn’t sound like what I had been experiencing.
I looked back at her with confusion and disbelief. But she had the pictures to prove it – or so she said. After describing to me exactly where in my intestines she had found inflammation, she told me they’d be sending me pictures in the mail. Once again, words formed only in my brain but couldn’t make it to my mouth: oh goodie. Pictures of my intestines in the mail. Just what I want.
She was going on and on but my mind was wandering, away from the healthy life I’d had and toward a life with a label. At one point she asked if I remembered waking up and there being “a lot of blood”. I remembered waking up, but my only memory was that I tried to make jokes, like I usually do when I’m trying to fend off some darkness.
Finally my doctor asked if I had any questions. Assuming she didn’t mean existential questions, I only asked one. “Don’t people sometimes need surgery for that?”
I was somewhat surprised at myself. I hadn’t really thought of that question before, but now that now that I knew that my illness wasn’t a fluke or a bug or a parasite it consumed me. In my head that question meant many things: Am I going to get worse? Is there a treatment that will work for me? Am I DOOMED?!??!?
My doctor was matter-of-fact. “Yes, in some patients with Crohn’s, surgery is necessary”. She walked away with promises of more information when I got my paperwork.
By the time I made it to the discharge room my boyfriend was back at the clinic to pick me up. He’d taken a day off from work so that he could drive me to my appointment and had bought flowers for me, a nice touch. I was moved, not just because he was thoughtful but because I knew that things were changing, that the healthy woman he thought he was getting involved with might not exist anymore.
As we walked to the door of the clinic I was still wobbly, clinging to his hand and half-leaning against his puffy coat. He asked if they’d told me anything, and I stopped in the hallway. I tried not to look at him, so I looked at the bland, medical-office-building décor: cream walls, green rug, innocuous artwork. “If I talk about it I’m going to cry, and I don’t want to do that here, so let’s go home”.