The founder of Gutless and Glamorous opens up about living with Crohn’s disease, the importance of self-love, and her efforts to empower and educate her fellow ostomy recipients.
What inspired you to create Gutless & Glamorous?
I was diagnosed with Crohn’s disease in 1998 and struggled immensely for over a decade due to the severity of my condition. I adapted my life to live while being in excruciating pain some days and in pain most. Crohn’s disease took my health in every way possible. It distorted my mental and physical health. I became oblivious to the fact my quality of life was gone.
Over the course of my life, I’ve had several surgeries, procedures, and multiple hospitalizations, with the overall goal of restoring my health and quality of life. My latest surgery was a total proctocolectomy leaving me with an ileostomy. I held on as long as I could to my colon, because if it didn’t work, then what next? I was still striving to be “normal” by clinging to the very thing that was killing me. But it came a time that I had no choice, and it was the best thing that has happened to me. There is absolutely no way I would want to go back other than to do it sooner.
After my surgery, I couldn’t believe that one of the sole reasons I didn’t want an ostomy was because of the stigma. I remember how scared and hesitant I was to receive one because of the negative stigma. But what I remember most was how great I felt after receiving one and I thought, “Wow. If I had known then what I know now, I could have been feeling that much better sooner.”
I wanted to provide that for someone else. I decided then that I had to do something about it. Even though ostomy is lifesaving surgery, many are reluctant to receive them because of the negative stigma. I didn’t want others to suffer unnecessarily as I did because of the negative stigma surrounding having and living with an ostomy, so I started Gutless and Glamorous. The mission of Gutless and Glamorous is to empower those living with or contemplating ostomy surgery due to illness or injury and to erase the negative stigmas and misconceptions of living with an ostomy.
I recognize the importance of building a community of those that can relate to what you are going through. It is imperative to know you are not alone. You may not go through the exact same circumstances, you may not have the same diagnosis, but chances are you have similar experiences and can relate more than you realize. You need to know that you will get through what you are going through.
What are some common myths or misconceptions about IBD and living with an ileostomy bag in particular that you had to overcome or wish the public knew about?
Living with IBD not only affects you physically; it has the power to affect your self-esteem and self-worth. You go through so many physical changes due to medicines, treatments, or the very cause and effect of disease. I’ve gone through many different physical changes due to these very reasons.
For so many, talking about the symptoms associated with IBD can be embarrassing. What people believe has the ability to control their perception of self. One’s perception of self is a concept that can be based fully on the awareness of others. My hope is to erase that stigma and show that having an ostomy can improve your quality of life, which is the ultimate goal. Removing the stigma can help achieve that goal for so many.
Over time, I have learned to remain constant in my beliefs: to not let the beliefs of others control how I view myself! I’ve learned that negative thoughts have the power to negatively affect my body. I’ve learned the importance of loving myself, staying true to myself, and knowing I am capable of and responsible for creating my own happiness.
Tell us about your work as an AerieREAL Model? How and when did this amazing journey begin for you?
This amazing journey began for me when Aerie posted an open call on their social media. I thought this would be a wonderful opportunity to help promote positive ostomy awareness. I honestly didn’t think I would receive a call back, but I did, and I was very happy. I knew then how big this would be for ostomy awareness. I was very excited to be featured in the Aerie bra campaign and to be a part of something so amazing! I understand all too well the magnitude of what this campaign means and how very special it is.
I’ve struggled with self-acceptance due to illness and the devastating physical and psychological effects that illness can cause. Many, myself included, have never seen a model with an ostomy. My photo represents so much. I can only think about what my image would have meant to me 20 or even 10 years ago. I might not have suffered and lived in excruciating pain for as long as I did. I might not have waited until it was life or death to receive an ostomy if only I’d had seen something like this to know it will be okay. And for everyone that has only heard negative things about a “colostomy bag,” maybe just maybe, they would think otherwise.
I am forever thankful to Aerie. Having the support of an influential brand like American Eagle to promote positive ostomy awareness has already changed lives, and I know this because of the feedback I am seeing and receiving. The messages, kind words, reposts, and shares are humbling and truly amazing.
I hope that this campaign begins a dialogue on how we see and accept beauty. I hope that everyone contemplating or living with an ostomy feel empowered and inspired. I hope this image challenges the minds of others to realize that ostomy surgery is not a death sentence; it can quite literally give you a new life. I hope that this is only the beginning.
You’ve said that, “being authentic with yourself and sharing your truth is essential” and that it’s a legitimate superpower! What advice would you offer to readers coping with negativity, insecurity, and general stigma stemming from a digestive disease?
Yes! I firmly believe that living your truth and sharing your truth has the ability to change and save lives. I believe I have the super power to love myself for all that I am.
I use my power to show and help people understand what true love really is and to empower others to love themselves for who they are. I choose to love what makes me different and unique because that’s ultimately how I found the greatest power of all.
In a world that is constantly telling you to look a certain way or be something you’re not, no matter how the world may view you or what the world tells you, you have to choose to live your truth and love yourself. You have to be willing to do what it best for you no matter how that may look to someone else.
Self-acceptance goes hand in hand with self-care, and, as you know, your gut health affects the entire body and especially your brain. What do you do to relax and recharge?
Yes, that’s true. The lives of people living with IBD struggling with self-acceptance due to stigma can be worsened, leading to prejudice and loss of self-worth, and causing negative implications for health and wellbeing.
Health and illness determine one’s state of well-being. Part of health is self-esteem, and that’s intrinsically connected to body image. Ultimately, if you love yourself for all that you are, you will do what is necessary to achieve your best self and best health.
I feel that coping with a chronic illness is a lifetime process. I’ve learned that changing my attitude changed my life for the better. You can’t control most things, and you can’t control an unpredictable chronic illness. I can’t control my body, but I absolutely have the power to control my thoughts.
I try to let go, enjoy the little things, and let life happen as it’s supposed to. When I am feeling okay, I recharge by reading, spending time with my nephews and family, and lounging on the beach. Life doesn’t always give you what you want, but it gives you what you need to mold you, hurt you, and gradually strengthen you into the person you were meant to become.