It’s not easy being a sick chick. I really didn’t want that label, so for the longest time, I lived in denial: keeping my illness a dirty little secret, downplaying the seriousness of my symptoms and medications, and pretending that my Crohn’s diagnosis was nothing more than a minor nuisance. After all, I loved living life – traveling, eating and drinking, spur of the moment walks or hikes on Sunday mornings, checking out the latest local live music, or just spending long hours of fun with my loved ones. Oh, and did I mention eating? That’s my favorite activity of all! As an Italian-Croatian self-proclaimed foodie, there is nothing more torturous that not being able to eat the foods I love, or at times, not being able to eat anything at all.
But denial was getting me nowhere, and no amount of wine, fresh-baked pastries, or trips to the Eiffel Tower could change the fact that I had a vicious autoimmune disorder. The more I tried to run from it, the more it chased after me. The truth is, since my diagnosis in 2002, my life has been a roller coaster of endless medical appointments, prescription medications, side effects, hospitalizations, surgeries, and countless rotating symptoms that have left me tired, in extreme pain, and at times, downright debilitated. One of the worst aspects of dealing with this illness is missing out on important life events, and in turn, having to let down my loved ones time and time again.
In the beginning, I listened to what most doctors told me: that food would have no impact on my disease and that I would have to rely on medication for the rest of my life. As a rule of thumb, I was told it was best to avoid a lot of fiber and keep veggies to a minimum. During flares, I was told to eat things like white bread (say what???). I followed everything I was told, took my meds, and assumed I could manage it all just fine.
But over time, my flares grew worse and more relentless. The medications that used to help me stopped working. I was hospitalized repeatedly and pumped full of antibiotics (which, despite the fact that they were necessary, often worsened my symptoms), and it became more and more difficult to bounce back. The medications started to have severe, sometimes nearly fatal side effects. My use of Remicade, for example, caused a “lupus-like syndrome” that left me with excruciating head-to-toe body pain, swollen joints, intense chest and stomach pain, and nausea so severe that I could barely eat. I was disabled for several months before finding a doctor who could help me (ironically, my symptoms resolved with prednisone, which I’ll elaborate on in a moment). Humira (another biologic) gave me extreme flu-like symptoms, spiking fevers, body aches, and miserable night sweats. 6MP/mercaptopurine seemed to help me for several years, but in the end, caused my liver to go into failure (fortunately, my doctors caught it in time, and I was very lucky not to have permanent liver damage). If you’ve ever been on prednisone (a steroid), you know all the horrible side effects that it brings: agitation, night sweats, high blood pressure, high blood sugar, weight gain, and the ever famous “moon face,” not to mention the long-term effects of bone loss and adrenal and immune complications.
In 2011, just two days after my wedding, I began to have my worst flare yet (I guess we decided to test our “in sickness and health” vows right away). For the next two and a half years, I would endure six hospitalizations, two partial colectomies (removal of parts of my large intestine), other surgical procedures, multiple trips to the ER, months of being bedridden, and 24/7 excruciating pain, all while being treated with harsh medications and high dosages of prednisone almost the entire time. (And by the way, prednisone is not meant to be used for prolonged periods of time; I am still dealing with the after-mass of all that steroid use today, working to rebuild my adrenal system and combat extreme fatigue, anxiety, eczema, and body pain.)
I explored every medical treatment possible, but nothing helped, and I felt completely hopeless. When I was at my worst, the pain was unbearable, and I was making upwards of twenty trips to the bathroom every day (TMI?). I wasn’t able to work, socialize, drive, or even do basic household chores. My life was simply about “surviving” from one moment to the next, and to say I was miserable would be an understatement. I felt like the nightmare would never end, and questioned whether or not life was worth living if this was going to be my forever future.
Down to 115 pounds in October 2012, I took a rare break from my bed rest to attend a friend’s wedding.
The surgeries helped momentarily, but I would learn that they were only a temporary fix. Just three months after my first partial colectomy, I started flaring again. I was devastated. I started to tinker with my diet, supplements, and other lifestyle changes (like meditation) but at that point my inflammation had escalated too far, so my changes just weren’t enough. After developing infections, abscesses, and fistulas, I found myself back on the surgical table just fourteen months after my first surgery. I had been granted a second chance, and I knew I HAD to finally make a major change in my diet. For me, the surgeries were like hitting the “reset” button, but it was up to me to figure out how to maintain remission with my own lifestyle choices.
In Maui, January 2013 : in-between surgeries, we attempted a short vacation. I’d gained all my weight back and more, now that my prednisone use was in full swing (hence, my steroid-induced “moon face”). Just two days later after this photo was taken, I found myself in a Maui emergency room with unbearable abdominal pain, unfortunately, a typical occurrence for me even while traveling.
On top of the Empire State Building in NYC, August 2013: my “moon face” (and overall weight gain) is even more apparent after almost two straight years on high doses of prednisone. You may also notice my rather yellowish complexion: I grew very ill during this trip, and returned home to find out I was going into drug-induced liver failure from mercaptopurine/6MP (because that’s just how I roll).
I was finally ready to make the leap, and so I began with the diet that had been recommended to me years prior, The Specific Carbohydrate Diet (SCD). When I initially read Breaking the Vicious Cycle years prior, I thought there was no way I’d ever be able to stick to any diet that didn’t allow grains. But now, at my most desperate place, I was willing to do anything. It turned out that SCD wasn’t quite right for me (too many nut flours and the allowance of legumes did me in), but it set me on the right track. I tweaked my diet from there, and by removing legumes and large amounts of nuts (along with some other changes), I accidentally became Paleo. I admit, I did “fall off the wagon” a few times along the way, but when I finally committed to eating 100% Paleo and stuck with it? It actually began to work.
With the combination of my surgeries and my new dietary changes, I went into remission for several years. Nutrition became a critical part of managing my inflammation. Although most medical doctors told me that food wouldn’t have any significant impact on my disease, it was food that became my “medicine.”
Unfortunately, as anyone with severe autoimmune disease knows, things can turn on a dime. Although my Paleo diet was helpful for many years, I eventually developed a histamine intolerance and had to adjust my way of eating. This only became exacerbated by new intestinal surgeries (including an ileostomy) which further limited the foods I could tolerate (I can no longer eat a lot of hard-to-digest foods, including many vegetables, because of the risk of intestinal blockages).
With so many food intolerances, I no longer follow a Paleo protocol. I mostly just eat whatever my body can tolerate on that particular day. But I still try to incorporate some of the principles as long as they support my healing and help reduce my symptoms. It’s also important to remember that everyone is different, and there is no one-size-fits-all diet that works for everyone. We experiment, and we do the best that we can!
The truth is, I have a disease that requires constant management. I still experience everyday symptoms, pain, and complications. Nutrition is a part of that management, but so is medicine. Even though I can’t tolerate biologics and some other Crohn’s specific meds, I still take other types of medication as needed. And there’s nothing wrong with that! In fact, many IBD patients have no choice but to rely on life-saving medications and treatments. But that doesn’t mean we can’t be approaching our healing from a nutritional angle as well. I believe in taking the best of both worlds — western medicine and alternative medicine — to create the most effective management plan.
It’s easy to get down and feel hopeless when you face pain and suffering on a daily basis. But being chronically ill can also be a blessing, as I’ve learned to appreciate many of the things I once took for granted. Every small moment of relief is a like a ray of sunshine…a reminder that every day is a gift, and that life, with all its challenges, heartbreak, and complications, is still beautiful.
