Over the years, I’ve tried everything under the sun to try to combat Crohn’s disease. I’ve been on every biologic, DMARD, immunosuppressant, and (colon safe) anti-inflammatory under the sun, including Remicade, Humira, Cimzia, Entyvio, Enbrel, Methotrexate, Stelara, Simponi, Imuran, 6mp, Pentasa, Entocort, Uceris, Sulfasalazine, Asacol, Plaquenil, Celebrex, and Lialda. None of them worked for too long, if at all.
My body always built up antibodies against everything. On top of those drugs never working (or not working for long), it all made my body physically feel like a nuclear power plant. For days after infusions, I felt foggy and exhausted and hardly able to keep my eyes open. Biologics, DMARDs, and other immunosuppressants all did the same thing to me — they all made me feel radioactive. It all made my body feel heavy and sludgy. My mind felt unclear and hazy and I had to work that much harder to focus and learn. I already felt terrible from my disease, and now, the toxicity of these drugs made it all that much worse.
Further, it was always a battle with our insurance company. My dad worked for a great company and had excellent benefits, but every month, it was a battle to get them to cover the medications. We’d get flooded with calls from the insurance agents, and sometimes even nursing staff that worked for the insurance company, trying to find holes where they could deny coverage. They’d argue with my doctor about trying a cheaper drug (all of which I either had or eventually did end up taking). Even as a teenager, I thought about how if this is so hard for us — for a middle-class family with good benefits — what was it like for other kids that were sick that didn’t have a dad with a good job like mine?
I spent all of my teenage years and twenties educating myself on my disease and what I could do to be rid of it. I wanted to know everything that my doctors did and more. That sounds so cocky, doesn’t it? They went through all of this medical school and a kid was going toe-to-toe with them? Perhaps so — but I refused to let anyone be in the driver’s seat of my body except for me. People always comment on how nice I am — and I truly am nauseatingly nice — but I’m also kind of a stubborn asshole. My cousin Robbie once told me when I was a kid that I was a “rebel without a cause” — but I think that has saved my life.
Crohn’s made smilier by forcing the bumble to snuggle me.
I had great relationships with my doctors — but I also knew that I drove some of them insane when I went toe-to-toe with them. I regularly told them how to adjust my medicine, what medicine to combine with which other medicine, tapering schedules, and more. I like to think that the really good ones, though, enjoyed it and appreciated me for it and that I provided a nice (but nonetheless pain-in-the-ass) break from their daily norm. (Likely wishful thinking, sorry docs.)
Despite my continuous efforts to seek alternatives, I had no choice but to pour every toxic medication available into my veins. One of the worst injectables for me was Humira — I couldn’t even give myself the injection, Sean had to because the medication burned so terribly upon injection that every time I’d try to do it myself, I couldn’t leave the needle in for the full dose. Remicade made me sleep for days after the infusion. Injectable Methotrexate left me in a chemo-brain-fog. Sulfasalazine left me nauseous and with a constant headache.
Equally as debilitating were the effects of high-doses of Prednisone. Oh, Prednisone — a miracle drug as well as a haunted-house of horrors. A drug that got rid of all inflammation, but left me with the energy-level and mania of small army, not knowing if I wanted to clean the house top to bottom, re-arrange the living room at 3 AM, or walk miles around the city with nowhere to go but everything to do, and a deep-seeded hunger in my belly that left me wanting to raid the refrigerator and eat my way from here to Zimbabwe. The insomnia was torture, and then when I would finally fall asleep, I’d find myself shooting straight up in bed only a few hours later, filled with dread and restless nerves that seemed to be crawling up my legs.
I discovered bioelectronic medicine on May 29, 2014. Little did I know that exactly four years later, on May 29, 2018, I’d be speaking at a board retreat alongside the man that saved my life. At that time in 2014, my husband and I were still living in Hawaii, where I was a high school English teacher. It was a late night of grading papers, and as any English teacher can relate, about 40 sophomore research papers in, I needed a little breather.
So, while sitting on the couch at 11 PM, surrounded by papers, with my knees elevated and propped up on pillows and packed with ice packs because of the swelling, I scrolled through Facebook.
As I scrolled, I saw a Huffington Post Live interview pop up where the reporter was interviewing Dr. Tracey about this new device called a Vagus Nerve Implant.
I watched the entire interview and heard about how the device was going to be used in clinical trials for Rheumatoid Arthritis.
Immediately, I knew it would work for Crohn’s disease too.
I knew that all of these kinds of diseases are the result of an overproduction of inflammation and I knew that everyone known medication for my illness had failed me so far. It seemed to me that medicine negotiated with the body, whereas electrical stimulation seemed to command the body.
I was eager to try something new; bioelectronics medicine made sense to me. I tracked down Dr. Tracey’s email immediately.
Although Dr. Tracey was incredibly empathetic and gracious, there wasn’t a trial available for Crohn’s at the time – that would take another three years.