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When Losing Weight Due to Crohn's Wasn't What I Thought It Would Be

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As I walked across the stage at my college graduation, all I was thinking was, “Don’t pass out, don’t pass out, don’t pass out…” I hadn’t eaten much at all in the days leading up to my graduation and had been clutching a Gatorade moments before entering the ceremony. I was also in a tremendous amount of pain.

Like many who struggle with chronic illness, I was experiencing the confusing pre-diagnosis stage. I did not yet know that the abdominal pain and cramping I had woken up with every morning for months (and barely managed to finish finals through) was my first Crohn’s disease flare-up. I used every excuse I could come up with to deny that something was seriously wrong. I told myself I was gluten intolerant, lactose intolerant, that I just wasn’t eating well enough, that it was stress-related – anything that could allow me to put off getting help until after graduation. All of these excuses were pretty effective, but nothing was a more effective hindrance than the mirror.

One of the most uncomfortable Crohn’s symptoms for me is bloating. It prevented me from wearing most of my clothes, seemed to leer at me all day and felt like a lead balloon that could either carry me away into the sky or sink me to the bottom of the ocean at any moment. But the most disastrous and, frankly, dangerous part about it was that it provided the illusion I was gaining weight. Before I knew that my abdomen was distended from inflamed bowels, I looked in the mirror and all I could see was a fat belly. This led me to eat more salad and other high-fiber foods to help me lose weight. What I didn’t know was that high-fiber foods exacerbate Crohn’s symptoms. My desire to look thinner actually led to an increase in my pain.

A month after graduation, a bag of popcorn sent me to the ER for the first time. They told me I had a bowel obstruction, facilitated by the non-digestible popcorn army in my gut. It was the most pain I had ever been in, but I was so relieved that someone was actually telling me I hadn’t made this up and they knew why I was in so much pain. This relief steadily increased as I learned about my disease. It had a name and its name was not “belly fat.” One morning in the hospital, I weighed myself for the first time in a while, only to find that I weighed less than I ever had in my adult life. I realized the size of my belly was keeping me from seeing I had actually reached what I have often considered to be my “goal weight.”

I have perceived myself as overweight my entire life. There has never been a moment when I thought honestly to myself that I was as thin as I would like to be. This mindset runs rampant in women and plagues me every day. By the time I was diagnosed with Crohn’s, I already knew this about myself. I was already aware of my dysmorphia, already actively fighting the daily battle to be confident with my body, already part of the growing feminist movement of celebrating bodies of all shapes and sizes. Crohn’s complicated things. It created this whole new dynamic with my body. On good days, I would feel grateful to my body for supporting me in what I did; on bad days I would cry for my body, feeling sorry for all it had to go through. When I looked in the mirror and saw my thinner face looking back at me, I wasn’t happy to see it. It represented pain, malnourishment and sickness. It showed me my body’s struggles. I had the “goal weight” I always thought I wanted, but I abruptly realized that thin does not equal healthy.

After months of being on a low-fiber diet, steroid treatment and Humira, my doctor finally ordered an MRI. My pain was not decreasing the way it should have been on Humira. The MRI results showed significant scar tissue and strictures, a result of inflammation having gone untreated for a period of time. I needed surgery to remove the un-healable parts of my small bowel. After the successful removal of 50 centimeters of small bowel, I began to recover. After the swelling went down from my surgery, I saw my belly sans-bloating for the first time in nearly a year. My new scar was a badge of honor I began to wear proudly. And as I slowly gained weight back, I felt as though I was returning to a previous self.

young woman standing next to a tree with her arms outNow, two years later and still in remission, I am back at my heaviest weight. I am now a vegetarian (a change I would have been unable to make during my year on a low-fiber diet) and eat lots of fruits and vegetables. I also eat a lot of cheese and chocolate. I don’t work out as much as I should; I never have. But I feel healthy. I feel grateful and joyous every day that goes by without a stomachache. There is a lightness to me now I didn’t have before. The daily battle to love my body no longer feels like a burden – it feels more like daily growth. Don’t get me wrong, I still battle. I still have days when I become incredibly discouraged when I look at my non-bloated but definitely squishy belly. But I refuse to allow myself to get lost in some future vision in which I am the thinnest, fittest version of myself. That’s not who I am today, right now, in this moment. So why would I waste my time pining after that person when I could love me now? Even if I could one day be that person, I cannot be that person today, this week or this month. So what am I going to do until then? Hate my body for all of that time? What lost potential that would be! The potential for self-love is more immense than I even know, but I do know that I will do my best not to waste another day feeling as though I can’t love myself as I am.

So I say a little “thank you” every time I have a healthy bowel movement, because that is a daily miracle we should all enjoy. I often become mindful of my steps when I walk from one place to another, because there was a time when my body would strain in this action. When I look at my squishy parts, I think of all the nourishment I am able to give my body and how amazing it is that I can sustain myself pain-free. Struggling with Crohn’s has given me the gift of this perspective and has taught me to celebrate my body in every way I can. While I still actively struggle with body positivity on a daily basis, the motivation to do healthy things is no longer just to reach a goal weight. Now when I do something healthy for my body, like roasting it up some veggies, taking it for a walk or tucking it into bed early, I do it because I am so grateful for all it does for me. I know I am in for a lifelong struggle with Crohn’s, so that makes all of my days with my body, in whatever state it is in, that much more special and my appreciation for my body as it is now that much more sacred.

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Originally published: January 31, 2017
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