Her culinary photography makes our mouths water, while her recipes have us salivating for more. Meet Nadia Maffucci Di Rienzo, the foodie behind @gutsygirldiaries on Instagram. She has stepped forward to share her ulcerative colitis journey with us, and the story of how her experiences with this disease have shaped her into the talented chef and social media influencer she is today. In her own words, here is Nadia’s story:
Hi! My name’s Nadia and for most of my life, I’ve lived with ulcerative colitis.
It all started when I began feeling symptoms of gastrointestinal discomfort, and as time went on, my abdominal symptoms became worse, so my family doctor referred me to a gastroenterologist.
After multiple stool samples, blood tests, and a colonoscopy, I was diagnosed with ulcerative colitis in July 1997 – just two weeks before my 15th birthday.
For the next several years, I was on and off different medications on a very long trial and error process. I went through months of perfect health to months of debilitating flare-ups, managed by a drug called Prednisone. I had a love-hate relationship with Prednisone because it had so many side effects like weight gain, moon face, bone density loss, irritability, depression, and the list goes on and on – but because it got me back to “normal” so quickly I was “OK” with taking it.
Being just “OK” wasn’t enough. I wanted to feel like myself, and so with the help of my doctors, I tried other treatments for my inflammatory bowel disease. Sadly, nothing seemed to work for me, and I still felt unwell. Frustrated, I was starting to believe I was never going to get better.
After experimenting with different medications, I went back on Prednisone. It worked for me: I got out of my flare, and my husband and I purchased our first home!
When my husband and I had decided to expand our family, I was excited, but scared I wouldn’t be able to conceive because of my ulcerative colitis. I spoke to my doctors about my plans and prayed to get pregnant. In December 2010, I received the best news: I was expecting!
As the pregnancy went on, I, against my gastroenterologist’s orders, stopped taking my medication because I felt great and was symptom free. My gastroenterologist explained this could happen during pregnancy because of the hormones. My pregnancy went well and in August 2011, I gave birth to a beautiful baby girl.
In November 2011, still on no meds, I had the absolute worst flare of my life. I was on maternity leave and I tried everything to heal myself. I decided against medications and turned to a more natural approach: eating a strict diet and homeopathic medicines.
It was a rollercoaster of emotions and symptoms. Some days were great, other days were absolutely unbearable.
In September 2012, I returned to work, not well at all. I was barely eating and experiencing severe symptoms, so my doctor prescribed me Remicade. As much as I was against taking medication to treat my colitis, this drug gave me the opportunity to have the quality of life I had in my early 20s where I felt like I didn’t have inflammatory bowel disease at all. The difference from my early 20s was that although I was on medication, I still ate well and exercised. I’m a true believer in that medication can only do so much. We must also be aware of what we put into our bodies as to try to help and not fuel disease.
The next five years were some of the best years of my life. I was able to do things with my daughter I never could before like go swimming and go to all day family picnics where I wasn’t guaranteed close proximity to bathroom access. I regained my self-confidence and was able to be a better wife, mother, friend, and family member – and was able to give birth a second time to a beautiful baby boy! I felt like everything was perfect, my family was complete, we were all healthy.
In early 2017, I began experiencing symptoms and started to panic. I called my doctor to book a Remicade infusion. I was confident I’d have my infusion and be good to go – but unfortunately, the infusion didn’t take. After one day, I started having symptoms again. We discovered I had developed anti-bodies to Remicade, and was resistant to its treatment.
My whole world felt like it came crashing down. Confused, helpless, and desperate, I went back on Prednisone just for the sake of getting “well”. Once I finished my Prednisone treatment, I was symptom free again. I started a new job, I was dieting and exercising, and on no medication: everything was going great!
But in January 2018, I started to flare again and opted to be part of a clinical trial. The screening period was excruciating; I had to endure multiple lab tests, blood work, and journal my symptoms to qualify. During the trial, I ate a strict diet, and began exercising the minute I got the green light. I was taking small steps in regaining my physical, mental, and emotional strength.
Today, 20+ years post-diagnosis, I am thriving: eating well, exercising, and taking my meds. For me, this is what works, and I have accepted that medication is a part of my life.
My experiences with ulcerative colitis inspired me to create my Instagram @gutsygirldiaries and blog, http://www.gutsygirldiaries.com, where I write about my journey with inflammatory bowel disease in hopes of raising awareness about digestive diseases, while also emphasizing the importance of gut health, and providing a place for others affected to find comfort and support as we live fearlessly with IBD.
I know that living with an autoimmune disease like ulcerative colitis can be a personal and at times uncomfortable experience. But how can we learn if someone doesn’t step up and tell their story? This is why I advocate. Having online platforms to speak my truth and help others is the most important thing to me.
I share my story with others in order to be an advocate for others struggling with IBD – so they know they are not alone.
READ MORE IBD STORIES!