January 20, 2012
Christina has Crohn’s disease that has been aggressive and has required 3 small bowel resection[s] despite Remicade and Imuran. Fatigue is there most days. There is a lot of intermittent abdominal pain. Out of a month, 10 days are bad, some are okay where a heating pad is enough and then there are 10 days or so where she is fine. She manages bad days with Ensure, pasta or less food. Her C-reactive protein, ESR were negative. Pain is still present.
“Look, can I be honest?” my gastroenterologist asks.
His question is preceded by a look I’ve come to know well—hands rubbing his eyes as if he’s frustrated or tired, lending the moment an intimacy that is either calculated, or comes after spending years with a person in their most vulnerable state. I can’t tell.
And I hate that it matters to me.
He leans back in his chair and settles into friendship mode. I genuinely like this man–he’s funny, blunt, and compassionate. But he’s stubborn, too. In the three years I’ve been on Remicade, I’ve had three surgeries and chronic, active Crohn’s disease symptoms. I’ve been willing to call the drug a wash, but he still insists that it’s working, even though the last time I had surgery, my surgeon removed two and a half feet of active disease only two weeks after my last infusion.
I nod and brace for his honesty and I’m glad I do.
“I see an attractive, intelligent woman sitting in front of me,” he begins and I try not to flinch. I know where the conversation is going and I try to block it out until I hear the words I don’t want to hear. The words that simplify this very complicated life that’s been given to me: “You need to focus on the positive.”
I regret opening myself up to him, explaining my feelings. That I’m trapped between eating a high-fiber diet to control my genetic hyperlipidemia which has rendered my blood a thick, paint-like substance because it’s so full of fat; and between eating a pasta- and white-bread-filled diet to control my abdominal pain and crippling Crohn’s flares because I can’t digest more than two over-cooked servings of vegetables a day.
I cross my arms over my chest and I feel the muscles in my shoulders tighten involuntarily, until I am semi-hunched around my heart. My rational mind is screaming at me to uncross my arms, to show that I am an open, compliant patient, eager for knowledge, eager for help.
Instead I want to cry because I am tired of this dance. I want to growl, “You don’t know how fucking positive I’ve been for the past five years.” I want to tell him that people shake their heads in wonder and tell me that I have a good attitude. That if they had severe Crohn’s disease, they wouldn’t know how to face the chronic pain, the inability to leave the house, the invasive and nauseating tests, and the painful, slow-healing surgeries.
I want to tell him how many times I’ve curled around myself, shaking and sweating from abdominal pain and told myself, “It will get better. You are fine. This will pass—you’ll be okay.”
I look for the positive in every crack in the wall—in every space inside of myself. I am sick of the positive.
I am sick of myself.
But my anger only drives him away—it makes me unattractive. And the worst part is that I know he is trying to help me, and my gracious, compassionate side wants to reward him for his help, so I nod in understanding as the muscles continue to tighten until I can barely turn my head.
“You should try yoga and exercise,” he adds. “You should lose weight.” He looks at me, then, taking in as much of my body as he can while I’m sitting in a chair that grows smaller across from his massive desk. His eyes squint slightly, “Are you overweight?” Before I can answer, he leans in and stares at his computer screen and finds the weight his nurse entered before she ushered me into his office. He does a quick BMI calculation and says that, yes, I’m slightly overweight.
My neck locks and my face freezes. I’m no longer able to fake a smile and I know this is dangerous because if I’m not responsive and open he will shut down and will stop trying to fight for me.
I wish I could tell him that I’ve gained the weight on purpose—that after losing 25 pounds in less than one month, I know how quickly I can sink into a weak, crumpled shell of myself. I wish I could explain that I’ve switched from drinking Diet Coke to real Coke in order to gain more weight from empty calories, but he won’t understand my rationale because it isn’t rational.
Sitting there, my muscles tightening, cold drops of sweat sliding between my hunched shoulder blades, I realize that I can’t tell him how the past summer has changed me. How two months on the GI floor at a university hospital listening to patients coding while I said the Lord’s Prayer out loud and tried to stay alive has made me a completely different person. I can no longer laugh at his genuinely funny jokes or appear charming—I can no longer apologize for feeling a “little down.”
At this moment, it takes all I have not to yell that he should have mentioned yoga four years ago.
I nod slightly, instead—as much as my clenched neck muscles will allow.
“Maybe if you saw a counselor or learned how to control your breathing…”
I know no amount of breathing will help my intestines process healthy roughage—the broccoli, cabbage, and steamed cauliflower I love and miss so much. He tells me of a Yogi in India who triumphed terminal TB and I flash to the women in the gym who teach yoga in Virginia and I want to say, “Are you fucking kidding me right now?” but I don’t.
Because I don’t want to hurt his feelings.
I had a fairly long discussion with Christina about how to manage her symptoms. I think a holistic approach with other non-pharmacologic interventions such as exercise, yoga, meditation, pranayama, counseling if necessary would be a good idea to help enforce the positive aspects of life and health. We talked about a small bowel x-ray and she hates the idea of doing this […]. We also talked about a pill cam to assess if her disease is active, but she is not up for any tests at this time. So I would like her to get started on Humira, focus of positive aspects of health and return in a few months to assess how she is doing.
As my doctor takes notes, I want to remind him that I spent almost a thousand dollars on acupuncture in between my first and second surgeries. I also want to remind him of the money I sank into fruitless sessions with a dietician. But I try to forget about long, thin silver needles in my stomach, and a woman telling me to heat high-fiber cereal even after I explained that it would cause an obstruction, and wise, self-healing Yogis and the chances of finding one in my hometown. Instead I cling to the hope that Humira will be my wonder drug even though I know it probably isn’t.
Based on the inflammatory markers and the fact that she is feeling better after stopping Remicade and Imuran, I don’t believe that she has active inflammatory bowel disease at this time. She clearly has a complicated history of severe Crohn’s disease, but I think it is in remission. I suspect that some of her symptoms are a result of IBS and possibly visceral hyper-sensitivity and possibly from previous surgical interventions likely due to the adhesions.
I read the rest of my doctor’s notes later that afternoon and marvel that we have two very different recollections of what we’ve both heard and said. I wonder why he’s written that I’ve stopped Remicade when I haven’t. I don’t bother to call and correct my medical records to reflect that I’ve only stopped Imuran, and that I was at his office only a few weeks before for my last infusion. And I don’t ask him to note that I’m only refusing new tests because I’ve choked down at least a gallon of heavy liquid barium in the past five years and have had four small bowel x-ray series which have all come back clear even when I’ve had high-grade strictures. Or that the last pill camera lodged in my gut, causing a small bowel obstruction and unbelievable pain.
And I refrain from asking him to change my record to reflect the fact that I don’t feel better, because in fact, I feel like shit.
I don’t tell him these things because I don’t want to fight. My body is tired and my soul is tattered. I know my job as a Crohn’s disease patient is to be compliant and follow my gastroenterologist’s advice. I want to keep all of these negative feelings and thoughts inside, but I’ve changed. I’m no longer filled with hope.
I’m no longer able to be positive.