I was in high spirits after Thanksgiving. My gut, however, was less happy.
The day after the big meal with friends and family, I found myself hurrying to the bathroom far more than the usual two or three times a day, and with more urgency. Friday I counted twelve BMs, all of them bloody. The same thing happened on Saturday. Compared to my plateau state of the last couple months, this felt like something different: a flare-up within a flare-up.
It was disheartening that I hadn’t even been in remission when this new phenomenon started. My last doctor in Madison had once commented that “Maybe this is your version of remission,” and the comment had settled over me like heavy, suffocating cloak. What if he was right? What if this state–a few loose BMs a day, with intermittent pain and blood, and the frequent drag of fatigue–was the best I would ever feel again?
The thought was so terrifying as to be unfathomable. I had patently refused to accept it: No. I knew what health felt like, and this was not it.
But now, after Thanksgiving, I wasn’t so sure. This was definitely a flare-up. If this was a flare-up, what had I been in for the last few months?
This flare was the latest piece of evidence that food had an enormous impact on my symptoms. Even though all our Thanksgiving dishes had been strictly macrobiotic, they contained many ingredients that I didn’t typically eat. There must have been something new in the dishes that my gut didn’t like–probably multiple things.
It was also, I reluctantly realized, an illustration of the danger in searching online for “macrobiotic” foods. There are two camps of macrobiotic eaters, I now understood: Those who eat this way to address diseases, and those who are just working on general health or weight loss. The former group, my group, needs to be far more conservative with ingredients. The latter is prone to “cheating,” concocting recipes that closely resemble non-macrobiotic foods and using alternative sugars like maple syrup, honey, and agave syrup to sweeten the recipes. Unfortunately, most bloggers who post “macrobiotic” recipes fall into the latter category.
Take our “macrobiotic cranberry sauce,” for example. The recipe had included ¾ cups of brown rice sugar and ¼ cup of maple syrup, as well as 2 tablespoons of orange juice–with its own natural sugar–and the natural sugars in the cranberries and the pears. It might have been labeled “macrobiotic” and found on the “Macrobiotic Chef’s” website, but reflecting on it now, this recipe simply couldn’t have been good for me or anyone with an inflammatory disease. I had omitted the maple syrup, but there was still far too much sugar being downed in one sitting. This recipe, I saw clearly now, was designed for people trying to eat healthier who are unwilling to give up the sweetness of typical American foods. I needed recipes designed specifically to heal the gut. Taste needed to be only a secondary consideration.
Dr. L had prescribed me Apriso, my latest attempt with mesalamine. Other mesalamines hadn’t worked in the past, but we hoped this one would. I picked it up just after Thanksgiving and began taking it, but knew it could take weeks to become effective. So in the meantime, I emailed Dr. L about my new flare-up and asked for some Proctofoam. It was the only drug that I was certain had worked in the past. A week later, within two days of starting the foam, the blood in my stools began to diminish.
It’s crazy, I wrote in my journal. 8 months have passed, and here I am taking almost the same meds as in March & April, with the same symptoms. Starting over. Except I know so much more now about diet, digestion, and health, and I’m more accepting of it all.
As soon as my flare started, I had returned to my most conservative meal: whole grain brown rice, red lentils or tofu for protein, and overcooked kale, topped with toasted sesame oil and tamari. So contrite was I about expanding my diet, and so afraid about being in another bad flare, that I even began eating this meal three meals a day, every day. Anything to get back to where I’d been as quickly as possible.
Thanksgiving had distracted me from my long-term goals: having a baby and being able to travel again. I had risked these goals for the short-term goal of feeling “normal” on Thanksgiving, which to me meant eating somewhat traditional foods with loved ones. In the future, I’d have to be better about keeping my eye on the prize. I wanted long-term health, even if it meant short-term sacrifice.
I couldn’t help harboring a stubborn, baseless optimism that somehow–through strong meds or strict diet or some sort of miracle–I could get into a real, permanent remission and move on with my life. In the same journal entry, I wrote about wanting to have a baby and become an energetic, hardworking world traveler again. When I think of how colitis might get in the way of travel, the claustrophobia begins anew and lately I sort of just refuse to believe it. No. That’s not who I am. I will find a way to go back to Africa, even if I have to take toxic drugs to do it.
But hopefully, it wouldn’t come to that.