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Year of Birth 1994
Lives: Charlotte, North Carolina, USA
Type of IBD: Ulcerative colitis
Diagnosis Date: 2014
Symptoms at Diagnosis: Severe abdominal pain, blood and mucus in stool, urgency, fatigue
Details of Surgery: None
My IBD journey began back in 2014, halfway through Culinary School, about two weeks after a bad car accident. I was traveling down a two-way road when a tow truck, going about 60 MPH (20 over the speed limit), came directly into my lane. It hit me head on and threw the car about thirty feet from the road. I awoke to a piercing ringing in my ears, blood dripping down my face and arms, and a completely unrecognizable car. I ended up miraculously only fracturing a small bone in my hand and spraining an ankle. However, over the next few weeks I started having intense abdominal pain accompanied by bloody stool, fatigue, and urgency that would eventually lead to my life altering diagnosis. After an appointment with my primary care doctor, I was referred to a gastroenterologist. After many tests including extensive blood work, stool tests, and a CT scan with contrast, it was decided I needed a colonoscopy. After that, the results came back: Moderate to severe left sided ulcerative colitis.
The diagnosis didn’t seem all that bad in the beginning. I was simply told to take some pills and continue living my life. I remember thinking, “Simple, I can do that.” So, I did. However, over the next year and a half I’d have a flare here or there making me miss work and have to take steroids to control it. The steroids came with a host of symptoms all of their own. I’d settled into the fact that this was my new reality. I thought, “I’ll just be sick sometimes, but it will get better with a different medicine, and then I can resume my life.”
I have gone through a few medications, but started with UCERIS, a corticosteroid, but was allergic to it. I then started with Lialda, an aminosalicylate and soon after added mesalamine enemas as well, as the Lialda itself wasn’t showing enough improvement. A few years later in 2019 I had the worst flare I've ever had to date and was hospitalized for seven days. This is when I started Remicade, a biological medicine, along with azathioprine, an immunosuppressant. So far I have had great success with this combination, and am grateful to be able to receive these treatments.
“Much of the next three months consisted of many long nights, crying fits, days spent sleeping and trying to forgive my body for being so different. I felt defeated.”
During this flare, I was losing a lot of blood from the ulcers, unable to fully digest anything, feverish with chills, in gut wrenching pain (literally), not able to eat, or even sleep as I was taking a trip to the bathroom about every thirty minutes. I was hospitalized for a week after going to an appointment with a specialist to look into why the steroids were no longer working. This hospitalization was in November of 2019. I spent the next three months solely recovering. Much of the next three months consisted of many long nights, crying fits, days spent sleeping and trying to forgive my body for being so different. I felt defeated.
I then started looking to diet to help my symptoms as well. I had initially done an elimination diet and removed gluten and dairy which helped, but only a little bit. This is when I found The Specific Carbohydrate Diet - SCD. While I have only been on it for a year and a half I have seen vast improvement and my doctors have as well. In that time I have only had one flare and it passed quicker and with a lower dose of steroids for a shorter span than any other flare before. By removing the foods that my body wasn’t able to fully break down, (things like maple syrup, sweet potatoes, and cassava) I have been able to see real improvements in my pain level and symptoms.
IBD has affected every aspect of my life including work. I am no longer able to be in restaurants with all the long hours and stress. Initially I felt very angry at my body for not letting me pursue my lifelong dream. However, when we were in lockdown for COVID-19 I was able to do some soul searching, and that’s when I realized my new dream. The SCD diet has changed my life for the better, and I want to share it with others, in hopes it will help them too. When first starting the diet there wasn’t a ton of recipes out there, or at least not ones that sounded appetizing. This is where I saw an opportunity to pursue a new culinary dream through creating and sharing SCD recipes. I have been collecting recipes, knowledge, and first-hand experience over these past seven years and I want to share it! My goal is to help others with IBD live better lives through healing foods. This is why I started my website Abigail Marie the Chef with IBD. There I share my SCD recipes, IBD news of new studies and medications, as well as blog posts about everything IBD.
"... finding a community of people who understand your condition and can relate is paramount."
IBD is so much more than just a gastrointestinal disease. It affects skin, eyes, mouth, other organs, and most of all your mind. Accepting and living with a chronic illness is a hard thing to do, and can weigh on you mentally and emotionally. This is where finding a community of people who understand your condition and can relate is paramount. This is also another big reason I started my website. I want people to know they are not alone! By sharing my experience I hope to help others find courage to share their stories too. I have also personally found that daily meditation and light movement like walking, yoga, or tai chi has helped tremendously with the mental burden. Take it a day at a time, and know that things will change. I invite you to come with me on this crazy amazing journey to healing and managing chronic illness together.