Going Public About Living with Inflammatory Bowel Disease
One week after college graduation from the University of Vermont, I moved to Atlanta. Not long after the big move, I started experiencing severe gastrointestinal symptoms. My symptoms progressed and increasingly interrupted my daily life, leading up to my realization that something was terribly wrong.
I went to my primary care doctor who referred me to a gastroenterologist who sent me for a colonoscopy. The biopsy results changed my life. At age 23, just months after moving 19 hours away from home, all alone in a big city, I was diagnosed with ulcerative colitis.
Prior to this, I had never heard of ulcerative colitis and had no idea what it meant for my future. After the initial shock and tears, I figured I would start treatment and go back to my normal daily routine. I quickly learned that that was not to be the case.
“A few years ago, I realized I didn’t want to live with these conditions in solitude any longer.”
It took me a great deal of time to come to terms with having an incurable, chronic illness. The words, “Why me?” filtered through my mind, and still come and go along with my symptoms.
For the first few years after my diagnosis, I felt physically and mentally alone, defeated, and broken. Despite my diagnosis and the embarrassingly painful GI symptoms, I put one foot in front of the other. I went from doctor to doctor searching for someone who would listen. I was desperate to find a provider that wouldn’t dismiss my symptoms as they persisted and was dedicated to advocating for my health.
After trying a few different medications, I accumulated a few additional diagnoses, including irritable bowel syndrome (IBS).
Years passed and I would have good days and bad days but felt relatively normal for quite a while. I changed jobs, moved around Atlanta, received my master’s degree and so much more.
Everything Came Crashing Down
Fast forward to 2016. No matter what I ate or did, I was feeling sick more often than not. I underwent another colonoscopy to find not too much had changed.
I was referred to a dietitian and began the low-FODMAP (low short-chain carbs) diet to help with my IBS, which completely failed. I underwent further expensive testing with another provider, who put me on expensive probiotics and other supplements. The one test that was really worth my time was getting tested for small intestinal bacterial overgrowth (SIBO). My test showed hydrogen- dominant SIBO, which correlated with my digestive symptoms.
Amidst all my doctors’ appointments, I didn’t feel like myself or like the person I wanted to be. I was weak, lethargic, and having unpredictable GI distress. I tried so many different things with the hope that something would magically work. I changed my diet several times and even was put on a liquid diet for a time. You name it, I probably tried it.
I had to stay home from work because I was too weak or needed to be close to the bathroom. In an effort to heal myself and to do things naturally I went to see a naturopath. That was expensive and resulted in taking so many supplements I could barely keep them all straight.
About a month or so in, I had the worst ulcerative colitis flare-up I had ever had. I couldn’t leave the house and was losing blood more than 20 times a day. I was exhausted and in pain. I could barely eat. I went to Urgent Care to make sure I didn’t have an obstruction, which gave me a prescription for extra-strength Imodium.
I had to wait until Monday to get in with a gastroenterologist. My provider was out so I had a new provider who had old-school ways of treating IBD. As scared as I was, I left with steroids and they were my saving grace to getting out of that flare.
As a follow-up, I had a sigmoidoscopy. This is just like a colonoscopy except it doesn’t survey the entire colon just the bottom part (sigmoid). This procedure found my inflammation was still present and possibly in my transverse colon which is higher up than previously reported. I was crushed.
I had tried so many things, supplements, doctors, diets, acupuncture, frequency-specific microcurrent treatment, detox foot baths. I was working so hard to get well and none of it was helping me feel any better.
When All Else Fails, Take a Day
I cried in my gastroenterologist’s office as she talked to me about escalating my therapy to a biological medication. As soon as I got home, I collapsed on the floor with my cat and cried and cried and cried. Then, I ate real pizza for the first time in over a year. I even ate a cookie, too. A real one with gluten. Yup, that is what happened.
I allowed myself to have that day to be sad because I knew that the next day was time to pick up the pieces and keep fighting like hell for my health.
After returning to my original provider, who had been out on maternity leave, I shared all my treatment attempts and test results with her. We did yet another round of treatment for my SIBO which helped tremendously. I continued to experiment with different probiotics to see how my body would react, with my provider’s permission.
I began focusing on stress reduction and eating well but not within any specific guidelines. I learned to accept that I may need to take a biological medication one day and that if that does happen, I am not a failure.
Living with these unpredictable gut conditions over the past eight years has taught me so many lessons and has molded me into the more compassionate and understanding person that I am today. I have learned the power of community and advocacy.
Invisible Illnesses Deserve Awareness Too
A few years ago, I realized I didn’t want to live with these conditions in solitude any longer. I founded Better Bellies by Molly to advocate for health policy reform, spread awareness and build a community of IBD and IBS warriors. I created a website equipped with a blog, Instagram and Facebook to bring people with similar struggles together to support one another.
I had no idea how rewarding this experience would be. I’ve connected with truly amazing people from across the globe, whom I never would have met if I didn’t let myself be vulnerable in sharing my story and the embarrassing reality of life with IBD and IBS.
Since creating Better Bellies by Molly, I have become a moderator for the Atlanta Crohn’s & Colitis Foundation’s support group and met with legislators in Atlanta and on Capitol Hill to advocate for health policy reform impacting IBD patients.
I’ll leave you with this: Whatever struggle you are facing, don’t go it alone—especially now that we are all isolated in multiple ways. Find a virtual community to lean on or build your own. As hard as sharing your journey can be, you never know who you might inspire, or even save, along the way. It might even be yourself.
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