When I first started experimenting with dietary interventions for Crohn’s Disease, my goal was to get back to eating cupcakes. I figured I could reach that point in 5 years or less—no problem—and confidently set out toward that impossible goal. It took me a few years to figure out the specific problems that my body has and how it responds to food. Now, my goal is to eat an artichoke with hollandaise sauce. Let me tell you why I’m okay with that.
I was diagnosed with Crohn’s disease when I was six years old.
That doesn’t sound like any more of a problem than getting diagnosed with a life-changing autoimmune illness, but my being that young caused a few complications. For one, there are few pediatric gastroenterologists (most people aren’t diagnosed until their late teens). And two, there are a lot fewer resources from which to learn anything, especially if you’re a parent (like mine) whose child now has an incurable disease.
And what does someone do when thrust into this situation? Listen to the doctor, of course. And really, why shouldn’t you? They’ve been trained as a specialist, they have mountains of evidence and papers on their side, and they have An Answer ™ to give you on a silver platter.
The first answer they gave me was Prednisone, a high-powered steroid with gnarly side effects. I was prescribed a 60 mg dose as a six year old child. 60mg!! For reference, I was prescribed 90 mg for pneumonia as a fully-grown ADULT. Can you imagine what that does to a tiny child? I’ll tell you: I hallucinated. Couldn’t sleep for a week. Practically crawled out of my skin. I still get flashbacks
My parents and I muddled our way through my childhood and early teen years. We saw specialists at the children’s hospital, consulted dietitians, went to Crohn’s & Colitis Foundation of America-sponsored seminars, but I ended up “graduating” from my pediatric gastroenterologist to an adult GI at age 13.
My new GI ushered in the immunosuppressant era of my life. From that point forward, my immune system would be suppressed for the next 16 years, from my first dose of Imuran at age 13 to my last infusion of Remicade at age 29. That’s a long time to be without an immune system.
For the record, I don’t recommend it.
However, getting immune suppressed allowed me to finish high school like a normal person and go on to college without worrying about my health all the time. I stayed up late and hung out with my friends. I tried new things like any normal college student. I could get away with eating like trash, so I did. My last year in college, roughly 75% of my diet was Cheez-its and chocolate.
In my early 20’s, though, I knew something would have to change. I was tired of getting IV infusions every 8 weeks. I was always worried about insurance costs, which are very high for a $7,000 per infusion drug. It got harder when I graduated and started supporting myself—I took the first job I was offered because it had stellar employer-sponsored insurance coverage, instead of finding a job that I loved. That year, I wiped out my entire savings account to cover the cost of one IV infusion because the insurance supplement didn’t cover the whole co-pay.
Insurance didn’t make me change my life, but it definitely provided incentive.
A few years later, when I was doing a new consult with a naturopath, I told him that it was my goal to get off of Remicade, the super-expensive immunosuppressant drug I was on at the time. And then it just slipped out: I wanted to get off insurance, too.
“Oh, no, that’ll never happen,” the doctor said. (He wasn’t my doctor for very long.)
Frankly, what I meant was that I didn’t want to be dependent on insurance, or owned by insurance. I wanted to get to a place of good-enough health where I could survive without insurance if I had to. At that point, it seemed like a complete impossibility. I stopped thinking about it.
What I did think about was my diet. I tried all sorts of approaches: the Specific Carbohydrate Diet, IgG/IgE allergen testing with a rotational diet, paleo (sometimes with the 80/20 cheat), paleo autoimmune, low-FODMAP, keto, and eventually all of them put together.
Doing work on my diet meant that I needed some expert help, which is why I had started seeing naturopaths. I started to research more than just diet, and strongly suspected I had Small Intestine Bacterial Overgrowth (SIBO) and a leaky gut. When my normal gastroenterologist just shrugged off my questions, I walked away from the standard healthcare system.
With the help of my team of naturopaths, I tackled SIBO head on and started the (long) process of ridding myself of 16 years’ worth of bacteria that had built up in because my immune system was too suppressed to fight it off. Those years of purging were not fun, but they were worth it.
My overall health improved dramatically. I quit all but one of my prescription drugs, and lived a normal life for a while.
But let me tell you something about bacteria colonies—they don’t like to die. They will craftily devise plans to NOT DIE. So you must fight them, aggressively.
Somewhere in the middle of trying the keto diet, I started losing control of my bowels (to the point of having a stash of adult diapers on hand), and continued to struggle with SIBO. My life completely and utterly revolved around my guts. To try to gain back some control, I searched for another way of eating that might help me get back on track. Juicing. The Wahl’s Protocol. More fiber.
Then, I learned that it was okay to only eat meat.
At first I didn’t believe it. Don’t you need vegetables for nutrients? What about Vitamin C? Do people really eat like this? But as I researched further, I found that many people—including people with Crohn’s disease like me—had thrived on a carnivore diet. So I decided to give it a try.
I cannot describe to you the depths of RELIEF that I felt those first few weeks as a pure carnivore.
No more angst about vegetables—which to eat and how to prepare them, and how much fiber is enough, and if I try this new thing how will my body react and how long will it be until I need a toilet?—all of that, gone.
For the first time in many many months, I felt hope. My body felt less inflamed. I did not magically heal overnight, but I could see small, real changes that made me confident in my body in a way I’ve never felt before. With my new-found energy, I began creative projects and traveled more. Because I gained back control of my bowels, I started hiking again.
My guts are no longer in charge of my life. I am.
There are still things I’m tweaking. Eventually I want to try adding back some plant foods, because I enjoy them and can see benefit from additional sources of nutrition. Stripping “everything” out of my diet has shown me just how much exercise, stress, and sleep are huge factors in my health, so I’m working on those as well. Not everything is diet.
Things are not perfect yet, but I’m immensely satisfied with how far I’ve come. I’m finally in a place where I don’t worry about insurance. I don’t have to. All my treatments are food or they’re completely free.
I have achieved the impossible goal.
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