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???) and white rice. 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 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 longterm 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 was very lucky to wake up from that surgery without an ostomy bag (that would have been the next step), and I knew that at this moment, enough was enough. 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.
Managing my condition with nutrition became my only option: as of now, there are no conventional Crohn’s medications my body is able to tolerate, and to my knowledge, no Crohn’s meds that work for me any longer. It’s a scary reality that I have nothing to fall back on if I flare again, but also a good reminder that I have no choice but to stick to a diet that keeps my inflammation under control. It’s all or nothing, folks.
This doesn’t mean that I am cured or have completely reversed my disease or that my life is easy now. Sticking to a strict diet all the time is hard; sometimes I slip up, and my body pays the price when I do. The bottom line is I have a disease that requires constant management. I still experience symptoms, pain, and complications, but they are minor in comparison to where I once was. My life is not perfect, but it is significantly better than it was before. Every year that goes by that doesn’t include a hospital stay is a success to me! Following a Paleo diet helps me effectively manage my disease, prevent any major flares, and work towards feeling better overall.
By the way, as much as I am a proponent for nutritional healing, I am not completely against all medication or all western medicine — I believe there is a time and place for them. I still take some other types of medication as needed, but only when I haven’t been able to figure out a natural way to address that respective issue. I’ve experienced some helpful doctors (and some not so helpful, but those are stories for another day), and I’m thankful for the surgeries that helped me “reset” and have the chance to make nutritional healing a possibility. Some of us with autoimmune disease have to rely on medication at various times during our journey. But that doesn’t mean we can’t be approaching our healing from a nutritional angle as well!
For me, the results of healthy eating are indisputable. After learning how food can either trigger or calm inflammation in the body, feeling the results, and eventually getting my life back, I never turned back. I went from once having very troubling blood test results — showing anemia, elevated liver numbers, alarmingly high platelet counts, and high blood sugar — to having just about perfect lab results today.
Although most medical doctors told me that food wouldn’t have any significant impact on my disease, and that lifelong medications were my only option, it was food that ultimately became my “medicine.”
Part of me, of course, wishes I’d explored my dietary options much earlier during my journey, but another part of me is grateful for the trials I went through. It’s easy to get down and feel hopeless when you face pain and suffering on a daily basis. But being chronically ill has actually turned out to be quite 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 truly beautiful.
I’m especially blessed because being a “sick chick” has enlightened me to become very aware of the foods I consume, the products I use, and the way, in general, I live my life. It’s empowered me to take responsibility for my body and soul and strive to become a better person, both inside and out.
It also led me to create this blog! With Adventures of a Sick Chick, I get to share the nutrition and lifestyle changes that have helped me, including nutritious and delicious Paleo recipes, healthy beauty advice, wellness tips, and once in a while, general musings about the things I enjoy in life. I am not a medical doctor or certified nutritionist; the goal of my blog is simply to share my personal experiences, hoping to inspire others to also take an interest in their own health and lifestyle choices. Although I may occasionally share some of my trials and tribulations, at the end of the day, this is really just a blog about the kind of life we all desire: one that is healthy, happy, and undoubtedly, delicious. Every life is an adventure. And this just happens to be mine.
Update: In 2017, after more than four years of remission, I was forced to adjust my diet (i.e. I wasn’t able to stick to a strict Paleo diet due to a histamine intolerance), which led to some extreme health repercussions. Unfortunately, this led to relapsing into a severe Crohn’s flare. After a few grueling months in which I faced limited options for conventional medication and treatment, I ended up having a total colectomy and ileostomy. You can read more about this new chapter of my life here.
