We believe a lot of things just because we’re told they’re so. When these things come from those who we think know better than us, we’re all the more likely to believe them. It’s not until we have cause to challenge these beliefs that we find all kinds of new truths. This story starts back in 2006, when a doctor told me I had ulcerative colitis, an auto-immune disorder that falls under the umbrella of inflammatory bowel diseases, or IBD’s. I was 19 years old and a college sophomore.
I saw my first gastroenterologist, or digestive specialist, at my mother’s urging. I had seen blood in my stool, and had been having some stomach cramps. The doctor said that it was possible that my immune system was attacking my body for some inexplicable reason. This immune response would trigger inflammation in my colon, which would basically look like a bloody rash, causing the symptoms I’d been having. Pictures from my first colonoscopy confirmed exactly this, and the diagnosis was made: I had ulcerative colitis at age 19. I’d never heard of ulcerative colitis, but it seemed pretty scary. Apart from the fact that I had blood in my poop and painful stomach cramps, I was met with the news that I’d need to be on medication for the rest of my life, and that the likelihood of having part of my colon removed at some point was high. If I failed to take care of myself, they told me, I could completely lose use of my colon or be at high risk of colon cancer.
I immediately started taking the prescribed medication, which I was told was like Advil for your colon (an anti-inflammatory). I remember asking what I should or shouldn’t be eating- surely, that would affect what was happening in my colon, I thought. Gastroenterologist #1 scoffed at me. “What you eat won’t really have an effect on your disease- unless you have a flare-up (a period of especially bad, acute inflammation). In that case, just DON’T eat.” This seemed preposterous to me. Besides, Gastroenterologist #1 had an awful bedside manner, so I didn’t like him much anyway. I moved on to Gastroenterologist #2, and diligently kept a food diary in preparation to show her on our first appointment. But I was wrong again- #2 wasn’t interested in my diet, either. I dropped it, took my bottles full of pills, and moved on.
Fast forward to 2009, now three years into taking this medication and living my life as normal. Let me stress “normal,” because without the daily reminder of the pills I swallowed, I could have forgotten I had this disease at all. No symptoms persisted, except for the occasional gas which I’ve come to accept as part of my natural state of being. Gastroenterologist #5 (#’s 3 and 4 weren’t my favorites, either) said it was time for another colonoscopy to check on the state of things internally. The pictures came back showing a healthy colon- no inflammation at all! Did this mean I was cured?! Number 5 told me that while this was good news, I shouldn’t get too excited- this was just the medication doing its job. So I celebrated knowing my colon was healthy, but kept on the meds to make sure it stayed that way.
I realize now that had it not been for a certain turn of events, I could have stayed this way forever- believing I had ulcerative colitis, taking medication every day out of fear that if I didn’t, I could be at risk for potentially very serious health problems. But this spring of 2012, the following happened.
1. I decided to quit my job, and with no full-time employment lined up to replace it, this meant losing health insurance, too.
2. I looked into buying a private health insurance plan. The agent told me to not bother applying- ulcerative colitis fell under the category of pre-existing conditions, and I would be automatically denied once I reported that I had it.
3. I found out what my other options were; there were two. I could go on Cobra and continue my existing coverage for $400 a month, or I could go without health insurance.
I could write a book on the ridiculousness of this situation. Without health insurance, my medication would cost me more than the already crazy-high cost of my only insurance option. Either way, I’d be paying out the nose for this disease that I had. I began to question everything. How could I be forced into such financial hardship by something that was barely present in my life? I felt fine! How could insurance companies deny me coverage because I had been slapped with the label of ulcerative colitis 6 years prior? Even with the strides being made by the passage of Obama’s health care plan, I was still stuck.
Around the same time that I was presented with this frustrating quandary, I began a book for my studies in holistic health called The Body Ecology Diet. The book details the existence of bacteria in our gut, both good and bad, and how the balance of this bacteria can seriously affect our health. The authors argue that as a result of improper diet and certain environmental factors, bad bacteria commonly outnumber good bacteria; without enough good bacteria present, an overgrowth of yeast occurs that can cause digestive problems, immune-related disorders, and a whole host of other health problems. The book begins with a quiz that is supposed to tell you how at-risk you might be of your gut bacteria, or “body ecology,” being out of whack. In one section, the quiz asks your history with certain prescription drugs, particularly antibiotics. This makes sense- ANTI-biotics serve the purpose of killing bacteria that are making you sick- but as it turns out, they kill the good bacteria needed for proper gut function, too! The question that really got me thinking asked this:
“Have you, at any time in your life, taken broad-spectrum antibiotics for respiratory, urinary, or other infections for 2 months or longer, or for shorter periods 4 or more times in a 1-year span?”
I thought back through the years and my run-ins with antibiotics. As a kid with allergies and chronic sinus infections, there were many. Suddenly, one year of my life was illuminated in my mind. My sophomore year of college had been one of particularly persistent illness (probably due in large part to how little I was sleeping and how poorly I was eating). Sinus infection after sinus infection would crop up, and I would drag myself to the student health center for another round of antibiotics. Over the course of that school year, I remember counting no less than 6 Z-packs, or concentrated rounds of azithromycin. Azithromycin, as you might have guessed, is a broad-spectrum antibiotic like the quiz question asked about.
At this point, the wheels were turning. I saw myself in retrospect, at age 19, taking round after round of antibiotics, then being diagnosed with an auto-immune disease, one with symptoms not unlike those of a gut-bacteria imbalance. Could it be that symptoms I presented back then and the inflammation that was seen in my first colonoscopy were mistaken for ulcerative colitis, but in fact were due to something else entirely? And if the diagnosis of ulcerative colitis that I’d been carrying around for 6 years was wrong, could I be eligible for private health insurance after all? I decided it was more than worth looking into.
This brings us to Gastroenterologist #6 and his team at UCLA, who finally listened to what I had to say. I told them my situation, and proposed my gut-bacteria theory. Number 6 was intrigued and very sympathetic to my cause, knowing how difficult it is for many with inflammatory bowel disease to be approved for health insurance. He agreed to let me do a trial with no medication for a few months; if I remained healthy and symptom-free, he would maybe be able to pronounce me disease-free and argue my case for insurance. However, #6 warned that what I was doing was risky; if I did indeed have the disease, months without medication would be damaging to my system. Understanding the potential danger, I began the trial immediately.
Four months later, I lay nervously on an exam table in the UCLA Center for Inflammatory Bowel Disease. Besides a few minor changes in my bowels, nothing alarming had happened while I lived life without medication. I felt healthy. But I knew that the true test would be a look inside; I couldn’t be free of my diagnosis until they performed a colonoscopy and saw that the disease was truly, internally gone. As I went under, I groggily asked the medical assistant to sing to me. When he wouldn’t, I apparently began my own short-lived rendition of our national anthem before drifting off.
I awoke to my parents’ excited faces and the sound of #6’s voice telling them the good news. He had seen a totally healthy, disease-free colon. My intestines were “good as new,” #6 reported. I was officially discharged as a patient from the UCLA gastroenterology offices. Number 6 wrote me a glowing report that told my story- he even included my own theory, calling my initial flare-up a likely “anti-biotic induced episode.” I attached his report, along with a letter I wrote, to my application for insurance with Blue Cross. Yesterday, I got my insurance cards in the mail. As of January 4th, I will be privately insured by Blue Cross. With my clean bill of health and zero prescription medications, I guess I made a great candidate.
This is a victory for me on more than one level. I feel personally vindicated that I didn’t just accept the medical fate that was handed to me. As a health coach, I am proud of the detective work I did to overturn my diagnosis. I am inspired by this experience on behalf of you reading this. Don’t for one second think that your health is out of your hands. Trust yourself and listen to your body. Listen to your doctor, but don’t be afraid to ask WHY. Question everything. You deserve to be happy, healthy and in control.
I wish you all a very healthy and happy 2013!