We’re thrilled to introduce Nadia Maffucci Di Rienzo as Ostomy Canada’s inaugural Ostomy Ambassador. With a story that oscillates between vulnerability and strength, Nadia embodies the resilience and spirit at the heart of our community. Follow her compelling narrative across our media channels as she takes us on her profound journey with grace and advocacy.
A Journey Through Resilience
Hi! I’m Nadia Maffucci Di Rienzo. To give you a little background information about me, I was diagnosed with inflammatory bowel disease (IBD), specifically Ulcerative Colitis (UC), in July 1997.
In November 2022, I was diagnosed with early-stage colorectal cancer. I was then scheduled for a total proctocolectomy in January 2023, and now I have a permanent ileostomy.
From Personal Battles to Public Advocacy
I am a digital creator, and I manage a personal blog and Instagram account, Gutsy Girl Diaries, to share my journey with IBD, Colorectal Cancer, and now life with an ostomy. It is my goal to use these platforms to advocate, educate, and break the stigma associated with invisible illnesses and disabilities. Through sharing my personal odyssey, I aim to remind everyone in our community that you are not alone.
A Gutsy Story
For most of my life, I’ve battled with an autoimmune disease, Ulcerative Colitis (UC), which is a type of inflammatory bowel disease (IBD). My first UC symptoms started in May 1997. I started feeling a lot of gastrointestinal discomfort, and as time went on, my abdominal symptoms became worse. My family doctor referred me to a Gastroenterologist. After multiple tests, blood work samples, and a colonoscopy, I received my UC diagnosis in July 1997, just 2 weeks before my 15th birthday.
I spent that summer learning about how to live with an autoimmune disease while trying to manage my symptoms, both of which I had little success in. I felt defeated and alone, especially since I kept my IBD diagnosis a secret from anyone outside of my immediate family.
For the next several years, I went from months of perfect health to months of debilitating flare-ups. It was a roller coaster of emotions and symptoms. Some days were great, and other days were just horrible, but I always made my health a priority. I focused on exercise and eating a healthy diet, which I found helped so much even when I was in remission. Despite having a chronic illness, I was able to achieve many life goals I had set for myself, such as completing my university degree, securing a full-time job, getting married, and having children (I have been blessed with two).
When my youngest was three years old, I had my worst flare-up yet. Desperate for relief, I opted to do a clinical trial. The screening period was excruciating as I had to endure multiple lab tests, blood work, and journaling of symptoms to qualify. The clinical trial was my saving grace at the time, and I was able to regain remission. I was eating a strict diet, and as soon as I could, I began exercising. I was taking small steps in regaining my physical, mental, and emotional strength.
Announcing The Gutsy Girl Diaries
In March 2018, I decided that after years of keeping my UC diagnosis a secret, I wanted to share my story with others. I wanted to become an advocate for IBD. I created Gutsy Girl Diaries so that I could have a place to document my IBD journey in hopes of raising awareness about digestive diseases while emphasizing the importance of gut health and providing a place for my fellow warriors to find the comfort and support they needed to live fearlessly with IBD. Gutsy Girl Diaries has allowed me to reach many individuals, make many meaningful connections, and collaborate with brands I love. I am so abundantly grateful for my social media community, which has shown me so much compassion and support.
Colorectal Cancer And Ostomy Surgery
Despite having a few years of remission in the clinical trial, I started having UC symptoms in April 2022. I assumed I was going into a flare-up, so I braced myself for what I thought would be a quest for a new medication. Following a colonoscopy, I received the devastating news that I had colorectal cancer in November 2022. After more scans, blood work, and tests, my cancer was staged at stage 1. For me, this meant that I did not have to undergo any cancer treatments. Still, I would need a total proctocolectomy surgery, which would result in me having a permanent ileostomy. I was devastated and overwhelmed with emotion. I could not fathom that my body would change permanently without my permission. As I tried to imagine what life would be like with an ostomy, negative thoughts flooded my mind.
I had my ostomy surgery in January 2023. It was one of the hardest experiences I’ve had to endure: a lot of silent battles, a lot of uncertainty, a lot of wondering, “How will I ever overcome this?”.. but most importantly, a lot of resilience.
Where I Am Today…
A little over one year ago, I had life-saving surgery that changed my life and body forever. Today, I am so grateful. My relationship with my stoma, whom I named “Stormy”, is a daily battle – a love-hate, so to speak. I have learned that living with an ostomy is a process of patience, grief, forgiveness, and perseverance. My ostomy not only saved my life from the spread of colorectal cancer, but it most definitely gave me my life back after living with IBD for over 25 years. I now live a healthier life, one I didn’t know I could have. This is why I advocate. Having an online platform to speak my truth and having that truth resonate with others warms my heart so much. Knowing that I am making a difference by sharing my journey is a great feeling.
My Support System
I am so fortunate to have such a strong support system of family and friends. I am always and forever grateful for my amazing husband, Carlo.
In all my advocacy work, one of the common themes I share with others is the importance of a sound support system. My husband and I are high school sweethearts, so he’s always been a huge part of every aspect of my life, especially my health journey. We met when we were just 16 years old. We were just kids, and at the time, I was so self-conscious about sharing with him that I had an autoimmune disease. It just so happened that not too long after we started dating, I had a flare-up, so there was no hiding my UC at that point! I told Carlo that I had Ulcerative Colitis, a type of IBD. He was so kind and so accepting of me, which I loved. Given the circumstances, he offered his care and support as best he could. Even at such a young age and not fully understanding the severity of my chronic illness, he never made me feel as if I was a burden or that I was unworthy of our relationship.
And since then, he has always made me feel valued and cherished. After nine years of dating, we got married. Traveled. And brought two amazing kids into this world. Here we are, 25 years later, and he is still my number one supporter. I am always searching for ways to beat my illness. Whether it was researching a new food or supplement that would improve my gut health or looking up the side effects of new medications.
The one thing that got me through all my UC flare-ups over the years was his charm and wit—always making me laugh and encouraging me to find joy in the little things, which is so so so important to having a healthy quality of life.
Before my ostomy surgery in January, the thought of learning the ins and outs of living with an ostomy was so overwhelming. Once I had my surgery, I was in so much pain and not very mobile, and the overwhelm intensified because it was hard for me to manage to care for my ostomy on my own. My husband jumped in and has been there every step of the way. It’s easy to feel so alone in this process, and I am so very lucky to have someone always ready and willing to help me all day, every day.
I am sharing this part of my journey because I feel that it is important for someone in your support system to know how to help with ostomy care in the event of illness or injury that could make ostomy care a challenge. It takes a village, and I am so grateful to be a part of the ostomy community, where I have learned so much already!
Follow Gutsy Girl Diaries
Visit Nadia’s website Gutsy Girl Diaries, or follow her on social media!
Source
This story was featured in the Winter 2024 edition of the Ostomy Canada Connects Newsletter. Read online today!
