I'm Ro. 

I’m a 30 year young woman with Crohn’s Disease. I have felt trapped by the burden of a chronic illness and the medical intervention it requires. This is my journey to taking back my life through dramatic change in lifestyle, location, and loving myself.

You May Ask Yourself Well How Did I Get Here?

You May Ask Yourself Well How Did I Get Here?

It began in college with what I thought were hemorrhoids, an ill-fated trip to the doctor, and an uncomfortably handsome medical student. Or maybe it began as a stoned teenager with a penchant for the munchies and embarrassing gas. Or maybe it began at nine years old, mindlessly eating Lays Sour Cream and Onion Chips in front of the TV only to realize in horror that I had finished the bag, then proceeded to hide it under the couch, and open another one.

On December 20, 2013 I collapsed in the shower. That sounds melodramatic. I was overwhelmed by the heat so perhaps slipped is more accurate. I was experiencing months of fatigue, blood in my stool, and an unexplained minor weight loss (this one I had no complaints about). It was the Christmas holidays so fortunately my office was closed for a week; I camped out at my parents’ house. Curled up in the fetal position, I lay in bed drinking broth and watching reality TV while my mother and father panicked over my physical state. My father is a well-respected doctor so I was able to see a Gastroenterologist immediately. My blood tests and later a colonoscopy revealed that I had a severe case of Crohn’s Disease of both the upper and lower bowel.

Crohn's disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. I was lucky enough to get the whole tract (wahoo!).  The doctor delivered the news with cold expediency and handed me a “Living with Crohn’s” pamphlet. He later gave my father a full report of the diagnosis, a paternalistic pattern that would continue to frustrate me throughout my relationship with this Gastroenterologist.

The only woman I had known who had Crohn’s Disease was an acquaintance’s mother; a sickly shrill woman who suffered from severe mental health issues and talked openly about having a colostomy bag (she’d even show you if you ask… or even if you didn’t). Needless to say the mental image of me with a hideous lumpy belly and smelly plastic shit-bag did not sit well. So I did what any young woman in her 20s does when faced with her own mortality and the reality of a lifelong illness.

I ignored it.

Sure, I took the prescribed 9 Lialda pills a day, but I made no other life changes. My routine went right back to normal and I got very used to batting away questions with a simple “I’m fine” whenever asked by friends or family. My symptoms continued but youth is resilient and I rationalized that this was just my new normal. Further blood tests revealed that I was still exhibiting symptoms and no amount of pleading “I’m fine, I’m still exercising four days a week, I’m still traveling, I’m still making artwork, I’m fine!” seemed to placate my concerned doctor and parents.  

The next step was a new drug called Humira, a self-administered injection into the thigh (or stomach if I was feeling brave), every two weeks for the rest of my life or until the next medical advance came along. I attempted a calming ritual around it; a steaming hot shower, wrapped in a towel, I’d wipe my thigh with an alcohol swab, pinch the meaty flab at the top, stuff another towel in my mouth, bite down hard, pop the top off the Humira pen, and as quickly as possible jam it into my leg while scream-counting to ten, my count muffled by the towel.  

This worked for about a year. I even traveled to South Africa once while doing it. I carried my little pens through airport security in an expensive thermal water bottle double wrapped in plastic and filled with ice, doctor’s note in hand.  I performed my ritual in my aunt’s slick marble Johannesburg bathroom.  

The next step was Remicade infusion, a treatment I had been refusing since I received my diagnosis. This treatment requires direct infusion of medicine into the bloodstream administered by a nurse every 6-8 weeks, again, for the foreseeable future. I received about seven or eight at home infusion treatments. After a steady stream of medical bills, numerous insurance debacles, and two terrifying allergic reactions that required 8 EMTs rushing into my tiny one bedroom apartment, it seems my body was not responding to the medication anyway and I discontinued use.

I reluctantly googled ‘nutritionists.’ Like most women I know, I have had a lifetime of weight struggles. The word nutritionist is loaded. I remembered the trauma of my older sister’s weekly weigh-ins at the home of her “dietitian,” a high-strung South African woman, who gave a 10 year old girl effective tips like, “grapes are laxative so they are a freebie” and “munch on celery when bored or hungry.” I openly feared that all nutritionists were woman masquerading their own disordered eating as salient life advice.

Despite my reservations, I found a woman who seemed kind in her online profile, and met only on the phone or via email, a fact I appreciated as I resented fitting in doctor's appointments into my already busy schedule. With her guidance I embarked on a Mediator Release Testing (MRT) Food Sensitivity Test and elimination diet based on the LEAP (Lifestyle, Eating, And Performance) protocol and the experience has been game changing for me.

In addition to facilitating my Crohn’s symptom recovery through diet, I am making some huge changes in my lifestyle and moving from Atlanta to Los Angeles. This is the story of taking control of my holistic wellness, moving from the Deep Georgia South to Sunny Southern California, taking the LEAP detox with me for the ride, and what happens when you stop waiting for the next medical advance, and DIY your health through active self-care.

My Last Remicade Infusion

My Last Remicade Infusion