June 2012: After 3 years of being symptom free, I started noticing a recurrence of symptoms (stomach bloating, not feeling well, feeling tired). I read the book “Wheat Belly” and was willing to cut out gluten and wheat, to see if I felt any better. I thought there could be something to this new way of eating, but Vea wasn’t sold. She’s watched me experiment with one fad diet after another, trying to find what works for my body best. Despite being gluten free, I still had unpredictable bouts of stomach distention, pain, loss of appetite, etc that just weren’t right. At this point, it didn’t strike me as a Crohn’s flare, because it wasn’t like the bouts of acute pain that I had associated with previous blockages.
July -September: As symptoms increased, I sought medical treatment. First, we looked at my diet. I had been substituting fresh veggies, smoothies and greek yogurt for the wheat / gluten products – not the smartest idea for someone with intestinal / digestive issues. We suspected the protein powder to be a culprit. I was advised to lay off the high fiber and avoid dairy and see if that made a difference. It didn’t. The distention and pain continued after eating, and pain started escalating to an unbearable level, with me writing on the bathroom floor in the middle of the night in agony. This happened about once a week. Then came the vomiting. It didn’t really phase me at first. It’s a little scary, but I think I was slowly losing touch with reality. If not for Hawea, I may still be suffering in silence, doing my best to be a brave little trooper who can handle anything. She drew the line mid-September after she witnessed a particularly horrific round of puking. I remember one particularly rough night, breaking down and crying in the shower, confessing that “I think my body is trying to kill me.” She calmly assured me it wasn’t. But I later learned that was her poker face. She was scared as hell. This in conjunction with the steady weight loss was the equivalent of giant red flags in her eyes. She went with me to the doctor, insistent on getting some answers. I was given a referral to a GI specialist for an endoscopy, and continued to manage symptoms in the meantime through a liquid diet.
The waiting game: Despite the mention of a referral, things seem to move slowly on the Big Island. I waited several days and didn’t hear anything from my doctor’s office or the GI regarding a referral appointment. I started with the phone calls, to the GI office, who claimed not to have received anything; to the doctor’s office, who claimed it had been sent. And round and round we went. With each call getting me nowhere, my stress level grew. I more or less begged, telling each office that I had a trip to the mainland planned in a little over a month (I was going to be in a wedding) , and that I was desperate to get in for some answers. It took about three rounds of calls to each office before an appointment was set. The soonest appointment they could offer was for October 14, the day AFTER I was set to return from my trip. My urgency was high. Theirs wasn’t. No amount of begging (and yes, I actually did beg) made a difference. I was put on a “call list” in case someone had a cancellation. All I could do was get zen about it.
My changing relationship with food: I sailed through the next few weeks on a liquid diet, dropping more weight each week. Never in my life did I think I’d be a size 2 and weigh less than 120 pounds. All of my clothes started to hang on me, belts were too big. I started getting comments from co-workers, who didn’t know about my Crohn’s. “No offense, but I really think you need to eat. You look better with a little more meat on you“. (If only I could, I would.) The liquid diet did enough to reduce the pain, and the puking stopped, but it didn’t seem to be a sustainable solution, at under 1000 calories a day. It was starting to be a new “normal” for me. I had stopped exercising because I knew I needed to conserve energy, and I constantly felt exhausted (but didn’t realize until later, just how tired and worn down I was). Some people wondered if I had developed an eating disorder. And in a sense, I guess I had. Just not a traditional one. A person with a genuine fear of food – for the pain it causes – can’t help but develop disordered eating.
This is my explanation for my obsession with food. When the basic sustenance of life is harmful to you, weird shifts occur in your brain. Night after night, for weeks, I would sit with a bowl of broth or a glass of juice while staring at “real food” on the computer. Pinterest has some AMAZING concoctions. It became a ritual – daily, I would eat with my eyes, pinning pictures of food I thought I would never again be able to eat.
I found a book on Amazon.com called “The Man Who Couldn’t Eat”, and began reading it before bed each night. The book was written by a man with Crohn’s disease, whose bowel had perforated, leaving him unable to ingest food orally for months afterward. I remember feeling an odd kinship with him – but it was the worst kind of rapport. I could relate to the mental processes he experienced, the de-humanizing effects and social restrictions that come from being at war with food. As I read, I felt simultaneously comforted (that I’m not alone) and horrified (at what he went through). I remember thinking “at least I haven’t been through THAT” as he described the excruciating pain of the perforation. Is it twisted, funny or just plain crazy that now I actually HAVE gone through that ? It leaves me relating to his story even more. Sadly, I haven’t finished the book. (To be honest, I’m a little scared of how his story turns out). I tried to pick up where I left off on the flight to Portland, but it’s a little too close to home right now. Someday I’ll see where the journey took him, but for now, I’m writing my own story. Day by day, step by step, bite by delicious bite.