People have always told me that having an almost-photographic memory is a gift. I’m not so sure that’s true. With a photographic memory comes the ability to remember every minute detail of a happier past, like the exact design on the chocolate ice cream cake my parents bought for my 6th birthday. It also means being able to remember every bump, every bruise, and every time I ever got hurt in such a vivid form that it seems as if it’s happening all over again. 

One would think that after immeasurable hours spent in the company of more doctors than any girl should have, the distinct memories of the pain of the past few years would eventually fade into one blurred recollection. Well, thanks to my memory, I remember it all.  I remember laying on my bedroom floor in the fetal position, clutching my legs to my chest and crying for help. I remember the first time I showered in a cramped, damp corner of what they called a hospital bathroom, with a plastic zip-lock bag clinging to my arm so as to not get my IV tube wet.  I remember every time a doctor diverted their glance away from my pleading face and blatantly said to my parents, “There’s nothing else I can do for her.” I remember not even knowing what to tell my friends, because how was I supposed to explain what was happening to me when I hadn’t the slightest clue?

The summer of my sophomore year of high school was when my usual self started to slowly drift away and it became concerning. A multi-sport athlete my whole life, I had basically never stopped running around from the day I could walk. But my sophomore year was when I stopped going to lacrosse practices and skipped out on hanging with friends because I constantly felt this indescribable sense of unnerving pain stemming from every part of me. It was as if my body morphed into my mortal enemy and was viciously fighting against me with every fiber of its being. My stomach ached constantly, my head throbbed with vengeance, and a task as simple as carrying in the groceries from the car would send me straight to the couch. It felt as though I had a never-ending stomach flu. I wasn’t me anymore and everything hurt.  

After a few unending months of blood being drawn and medical history being recorded, I finally had a diagnosis, or so I thought. They said it was Fibromyalgia and IBS thrown into the mix. Somewhere along the way, they also claimed I had acquired a parasite, which every teenage girl just loves to hear. Doctors began to fill my system with medications intended to combat the symptoms associated rather than ever really getting to the real root cause. This was also the first time I tried a loose variation of a gluten-free, sugar-free and dairy-free diet in hopes of eliminating any food that could trigger a potential upset of my stomach. It worked a little bit at the time, but I was young, and it was hard for me to change my diet completely and stick to it. At the time, nothing seemed to work with longevity. And the pain continued. Something else was still wrong. 

The stress of schoolwork compounded with the strain of sickness led me to miss over sixty days of school sophomore year and eventually be put on homebound instruction in order to finish at my own pace.  Being homeschooled only reinforced the feeling that I was different from everyone else my age. Bed-ridden in a world of my own, I missed out on everything. I think I cried every day. I didn’t want to be different, and I definitely did not want to be dealing with any of this. I was absolutely bitter with resentment. It wasn’t fair, and I couldn’t help but wonder, why me? 

Going into my junior year, I figured that there was no way that this year could be as worse as the one prior.  As it turns out, I was wrong. Shocker. History found a way to rear its ugly head and repeat itself. Once again, I was forced to face the same situation all over again, and this time, to an even greater extent.  As if the pressure of ACTs, applying to college, and, of course, junior prom wasn’t enough, I had to simultaneously manage the most pressing issue in my life – my rapidly deteriorating health.     

The fact that I was still suffering from excruciating pain, in my stomach especially, came as a major concern to both myself and my family. In hopes of getting to the bottom of what was going on and ultimately solving the mystery of me, I was scheduled for an endoscopy as soon as possible. I didn’t even know what an endoscopy was. I only knew that I would be put to sleep with anesthesia, that doctors would stick a few tubes down my throat and that, hopefully, I would wake up with an answer. Instead, I woke up with nothing besides an overwhelming grogginess and the feeling of a stinging, sore throat from the previously placed tube. The tests revealed nothing. Again. There was no indication as to what was still causing the problems that I was experiencing. I felt invalidated, defeated, and just tired. 

It wasn’t until weeks after those procedures, when I turned to my parents and cried that the pain was too much to handle anymore, that I was taken into the emergency room and hospitalized for two weeks.  I spent three hundred and thirty-six hours lying in a hospital bed with cold wires and piercing needles that were practically embedded into my skin. I had a team of kind nurses that tended to my every need and a loving family that stayed faithfully by my side, and I had never felt so alone. I needed a real answer in order to feel whole again, but even after two weeks of being thoroughly examined like a science experiment, that wasn’t looking like a possibility. ​

I still don’t understand how the hospital doctors didn’t suggest I get a colonoscopy while I was there for two weeks. But they didn’t – until we demanded it. We took action into our own hands, contacted a new Gastroenterologist, and scheduled me for a colonoscopy. Unlike an endoscopy, this time, I’d have a tube stuck up my backside. Yay. Once again, I woke up from the procedure and heard the doctor say, “The test revealed nothing.” Defeated didn’t even begin to describe it.

A few days later, I got a phone call that changed everything. My new doctor reported that a further biopsy of the colonoscopy revealed that my inclination was right all along; there was something more.  He said it was Crohn’s disease, and described it in a way that fit every single one of my symptoms. I immediately hung up the phone, googled “What is Crohn’s Disease,” scanned through all the search results, and breathed the biggest sigh of relief as I told myself, “This makes sense. This is my answer.” 

With this answer came the ability to move past the unknown and move on with my life. I was put on steroids to help calm the long-standing inflammation that other doctor’s had missed for years at that point. I was able to finish applying to colleges, go to my senior prom, and get my high school diploma. I even managed to study in Paris the summer before my senior year thanks to my mom coming with me and high doses of said steroids. Although there is no known cure for Crohn’s disease, the right course of treatment can help. The thing is, though, there’s no universal “right” course of treatment. IBD is so individualized and no one’s needs or health journey is going to look the same. For me, personally, BOTH medication and diet have always been needed to keep my Crohn’s at bay, since we did eventually discover that I am incredibly intolerant to gluten – along with other food allergies and intolerances. So, in addition to daily doses of medication for my Crohn’s, I also took an initial stab at the Specific Carbohydrate Diet, otherwise known as SCD. Slowly but surely, things began to fall into place for the time being. There were no more overnight stays in hospitals, no more IVs…I felt like myself again and I felt ready to take on the next four years of college. 

At first, my diagnosis was a relief. It really was. I finally felt validated. I finally had answers. I had been searching for answers for so long and no one knew what was wrong with me. I thought I could easily accept my diagnosis because it was an answer, a way to move forward. When I got to college, though, that’s when it became difficult for me to truly, deepy, authentically accept my diagnosis. In fact, for about the first two years, I basically pretended that I wasn’t chronically ill. 

Yup. Considering I had been diagnosed with a lifelong, life changing chronic illness, my health problems wouldn’t magically go away when I got to Binghamton. Unfortunately, though, I pretended like they would. I was so tired of being sick and tired, so done with feeling different and restricted and confined that I just wanted to start over and be like everyone else. Turns out, the path towards realizing that I will never be like everyone else, nor do I want to be, was a long, hard process that truly didn’t happen until later. 

For my first two years of college, I slacked on my diet and too easily forgot about my crucial medication. Even though I knew these two things had the power to help me tremendously, I was too tired of feeling limited and wanted to “live my life,” as I would tell myself. Rather than living my life, though, I was essentially living a lie instead. I lost the energy to take care of myself and found myself getting way too drunk for the first times ever. Surprise: too much alcohol too often and too many late nights are not my body’s friend. It took until the winter of Sophomore year for all of this to catch up with me and I suffered from my first Crohn’s flare since High School. 

A disease like Crohn’s has the ability to affect your whole body, and that it did. In addition to the stomach pain, my sinuses became unbearable, so I had to get sinus surgery, which only ended up putting my body into extreme dehydration and back in the hospital with an IV lodged in my arm once again. My mood was awful, and my anxiety disorder, with which I had been diagnosed years prior, was completely out of control. I had to do some hardcore self-reflection to work through some of these deeper mental issues, which wasn’t easy, because no one ever likes admitting they’re wrong or that something’s wrong with them. I got the flu and then ended up in the hospital with the adenovirus on top of that. That’s when I found out that my CRP number, a number which measures levels of inflammation in your body, was a whopping 106. A normal CRP level is anywhere from 1-10, depending on your lab, so it’s safe to say that my body was screaming for help. Ironically, in an effort to not be where I was in the first place, I was back to square one, right back where I started. I felt like I had hit rock bottom yet again, but there was this voice inside of me that kept saying “it’s only up from here. Keep going.” I was forced to face the fact that I have Crohn’s disease. I was forced to come to terms with the idea that my definition of normal will never be like anyone else’s. Accepting your diagnosis isn’t something that happens overnight. It takes time, trust me. But, when I slowly began to embrace my truth, when I began to own the fact that, hey, I have Crohn’s disease and I am that girl who can’t have gluten, that’s when it all began to shift and change.

My junior year of college was when I really began to make and see a change. I knew I had to. My mom and I found a functional medicine doctor, who helped me develop a more whole picture, holistic approach to healing in tandem with my GI and medication regime. I began to move my body in a way that felt right for me; I learned that not only was exercise a necessary part of the healing process, but it also became a form of therapy. I found solace in daily walks, letting all my worries slip away as easily as I let my feet wander beneath me within nature. I found both internal and physical strength from being able to move my body in a way that best suited me. I began cooking for myself even more, seeing my dietary changes as something that could truly help me, rather than something to dread. I sought to see cooking in accordance with my food allergies and intolerances as a daily Chopped episode where I had to create delicious meals with what I was given. I began to love food again rather than loathe it. I gained a passion for cooking, and I gained a newfound sense of self that no one, not even myself, not even this disease, would be able to take away again. Sure, I grew apart from people in college as I stopped partying and going out every night, but it was worth every second I spent focusing on putting myself and my health first.  

Flash forward a few months and I was taking on the world by storm while studying abroad in Barcelona, Spain. Luckily, I had an apartment in my kitchen and I could prepare meals during the week, but being in a foreign country and traveling every single weekend definitely started to take a toll on my body. 

I had the time of my life, and I took care of my body as best as I could, but when I returned home, I knew something was off again. I would eat one small piece of cooked spinach and bloat instantly. It didn’t make sense. I was experiencing random, stabbing stomach pains again, so I went to my gastroenterologist. Fortunately, my Crohn’s wasn’t the issue. In fact, my inflammation lives were better than ever, apparently, with my CRP well-below the staggering 106 that it used to be. If it wasn’t my Crohn’s, it had to be something else. I knew it had to be. I went back to my functional medicine doctor in search of some more answers and found out that I had virtually no stomach acid whatsoever. Now, I know what you’re thinking. People have to take acid reducers all the time, so isn’t having no stomach acid a good thing? Yeah, no. It’s not. You need the right balance of stomach acid in your gut biome in order to be able to properly digest food, which I wasn’t. It was around this time that I was also diagnosed with good ole’ SIBO – small intestine bacterial overgrowth*. Just when I thought I had it all figured out, I was dealing with more gut health issues and had another protocol to follow. Yet, with this frustration came a deeper realization. I had been through hell and back; I could do this. 

I came to the internal decision that I would refuse to let this set me back. Instead, I would see it as an opportunity. Another important part of my story. I felt like there had to be people out there who could benefit from hearing the story of what I had been through and hearing the reality of what I was currently going through. There had to be people out there with Crohn’s and autoimmune diseases and gluten intolerances and a steadfast determination to not let those conditions constrict them from living their best lives. There had to be someone, someone like me, to be the person I needed when I first started this whole journey. And that was the spark that lit my fire; that was how The No Gluten Girl came to be.  

Then, a few months into creating my account, after two years of being flare free, I felt like my health was taken away from me. One day everything was fine. And then it wasn’t. It happened out of nowhere. I had been flare-free for over two years. And then I wasn’t. It was a frantic blur, from school to home to hospital before I could even bat an eye. ⁣⁣⁣It was too flares within two months. It was my life flipped upside down as the unpredictability of IBD took control.⁣⁣⁣

For me, my flares are different from the regular symptoms and discomfort I typically experience. When they happen, I can’t move. I can barely speak. I can barely breathe. I remember hoping that it was appendicitis because the possibility of it being a flare was too much to handle. The idea was too paralyzing. ⁣⁣Then the idea became reality as the test results came in. I was flaring. It was happening. Then it happened again less than two months later. That good old old CRP level, the inflammatory marker that should be between a 1-10, depending on your lab, of course, was a 165. The highest it had ever been. It was definitely happening. ⁣⁣⁣I went from finally thriving in college to having to finish my senior year at home, in too much pain to get off the couch and so weak that I found myself passing out on my kitchen floor when I would try to stand up for too long. I could barely eat. I could barely function. elt broken and defeated, like I was back in high school all over again – bed-ridden, isolated, terrified of what my future would hold. 

I was put on prednisone again temporarily and went through multiple, different, new doctors this time too because my previous GI was peds and I had aged out. None of the new ones we went to were the right fit nor took me seriously. I remember one doctor telling me, a girl who had already been diagnosed with multiple food allergies and intolerances, “it doesn’t matter what you eat, as long as you don’t eat corn and fried foods.” Another doctor and his staff never responded to our calls after I passed out on my kitchen floor. After a lot of trial and error, I finally found the right fit. This doctor actually had Crohn’s himself; he just got it. He took the time to listen to me and helped calm some of my health anxieties. My family and I, along with my care team, made the decision that it was time for me to go on a biologic. Yes, I was scared. But, for me, I knew it was the right choice. 

As I’m writing this, it’s been a while now since my senior year of college. I’m 25, I’m in years-long remission, and I’m in the best place that I’ve ever been when it comes to my health. Even just typing that out feels like those words will jinx everything, because I know how quickly things can change when living with an unpredictable illness like IBD. I know how the sharing of good news can feel like you have to knock on wood the second certain words come out of your mouth or make their way onto paper. But, I also know that this news is worth celebrating, it’s worth sharing, and I hope it can serve as a source of hope to anyone who may need it right now. 

If you had told any version of my past self that I would be where I am and who I am now, today, I wouldn’t have believed you for a second. Not even for a second. During those times, when I felt both my present and my future shattering like glass all around me, never did I think I would have the strength to pick up those pieces and build something again. Something new. Something better. 

Everything I have been through – every hospitalization, every tear, every bruise from every needle gone wrong – has built a kind of strength and resilience within me that I never knew existed. That I never knew I had. Life can be unpredictable and painful and terrifying. But the way it brings out a relentless strength you never knew you held inside of you all along is wildly powerful. The power to pick up those pieces that you once felt were too broken to ever be put back together is forming within you every single day. Every time you wake up in the morning and every time you go to bed at night, it’s there. It always has been. It grows stronger with every low, and it will often reveal itself to you when you take a moment during every high to look back and see how far you’ve come. I don’t know what the future will hold. I don’t know where I’ll be or what I’ll be doing or what I’ll be thinking another year from now. But if there’s one thing that it all has taught me, it’s that what lies inside of us is far greater than anything that lies ahead. When it feels like the pain is too much to handle and your world is breaking into pieces and you want to give up, please keep fighting. Please remember that.