Gutsy Girl Diaries: Nadia’s Journey from Diagnosis to Empowerment

Receiving a diagnosis of inflammatory bowel disease, especially as a teenager, requires an extraordinary amount of resilience and perseverance. At sixteen years old, Nadia Maffucci Di Rienzo, was diagnosed with ulcerative colitis, and suddenly felt that her body was in control. She lived with constant angst, never knowing how her symptoms would fluctuate from one day to the next. This feeling of uncertainty allowed her disease to define her and ultimately diminished the quality of life she believed she deserved.

Eventually, she reached a breaking point and refused to let her body control her life any longer. She adopted new strategies to her daily routine including eating clean whole foods, taking supplements to heal and support her digestive system, exercising, and taking medications. As she made these changes, she realized she was not alone and created the “Gutsy Girl Diaries” an online platform to share her story, her habits, and practices to help raise awareness about digestive diseases and provide strength and community to other IBD warriors.

Later in life, Nadia received a diagnosis of early-stage colorectal cancer and lifesaving ileostomy surgery. Today, Nadia is married to her best friend, raising two children and continues to face these challenges while using her voice to raise awareness for the IBD community.

In this interview, Nadia shares a bit about her journey with IBD, early-stage colorectal cancer, and her new life with a permanent ileostomy. She also discusses her motivation and inspiration to create the “Gutsy Girl Diaries”, some tips she offers on her platform, her support system, motherhood and family life, and advice she would give to a newly diagnosed IBD patient.

1. Can you tell us a bit about yourself and your journey with Ulcerative Colitis, your ostomy, and your experience with colorectal cancer?

Hi, my name is Nadia and I am from Toronto, Ontario and I’m an Advanced Records Analyst and Team Lead for degree audits and special programs at York University.

My IBD journey began in May of 1998, when I started experiencing worsening abdominal pain and gastrointestinal discomfort. My family doctor referred me to a pediatric gastroenterologist, and after several tests, blood work, and a colonoscopy, I was diagnosed with Ulcerative Colitis (UC) just two weeks before my sixteenth birthday.

I struggled with my diagnosis. I kept it a secret from everyone except my immediate family and developed a fear-based relationship with food. I felt hopeless and alone as I learned to adapt to living with chronic illness and managing its symptoms. For several years, I carried the burden of flare ups and experienced the highs and lows of different types of treatments. I also participated in many clinical trials; however, the results were often not ideal.

In November 2022, I received a diagnosis of early-stage colorectal cancer. To prevent further disease progression, I underwent total proctocolectomy surgery in January 2023 and now live with a permanent ileostomy.

‍

2. When did you create “The Gutsy Girl Diaries,” and what inspired you to build your own platform? What makes this space special to you, and what type of impact do you hope it has on the IBD community?

I created the “Gutsy Girl Diaries” at the end of January 2018, in the middle of one of the worst flare ups I have ever experienced. After years of hiding my UC and feeling isolated, I reached a point where I wanted to break the stigma, speak openly about my journey, and ensure others did not feel as alone as I once did.

When I was first diagnosed in the late 1990’s, there were no forums or accessible spaces where I could connect with others navigating the ups and downs of IBD. This absence became my motivation and inspiration. By sharing my story, habits, and practices, I hoped to create the kind of supportive space and community I wished I had when I was younger.

The “Gutsy Girl Diaries” is special to me as it has allowed me to connect with so many individuals, develop meaningful relationships, and collaborate with brands I use every day. I hope my platform continues to provide a space to raise awareness about digestive diseases, emphasize the importance of gut health, and offer comfort and connection in a way that resonates with other IBD warriors navigating the obstacles of chronic illness.  

‍

3. On the “Gutsy Girl Diaries,” you have shared different recipes, products, and wellness tips and tricks. What are some of your favorite recipes, products, and wellness tips and tricks you have shared?

My favorite recipes that I have shared on the “Gutsy Girl Diaries” are the ones that are easy to make and gentle on the digestive system. One of my go-tos is my High- Protein Cloud Bread Pizza. I love this recipe as it incorporates savory and sweet flavors and is easier on the gut than traditional crust. We have linked the recipe below!

When it comes to products, I am a big fan of LMNT electrolytes. They contain no sugar, gluten, or questionable ingredients. I find it is extremely important to stay hydrated with my ileostomy, and LMNT has been a game changer! We have linked LMNT electrolytes below!

A tip I often share on the “Gutsy Girl Diaries” is the 80-20 rule. The 80-20 rule suggests maintaining a strict, gut-friendly diet 80% of the time allows for 20% flexibility. I also make sure to follow a balanced diet consisting of whole foods as I find additives disrupt my digestive system. Moreover, I cannot recommend movement enough, it supports both my physical and mental health. For example, during the Covid-19 pandemic, I would prioritize taking walks during my lunch break to ensure I was able to get a change of scenery and mindset.

‍

4. As an IBD warrior, ostomate, and colorectal cancer thriver, you’ve shown such strength and resilience. These experiences can be incredibly challenging, and having support and meaningful outlets can make a big difference. Who has been part of your support system, and what outlets have helped you continue to persevere?

My support system is a huge reason why I am where I am today. My husband, Carlo has been there for me since the start of my IBD journey. We met when I was first diagnosed, at sixteen, and we have been together ever since. He has stood by me through every clinical trial, my colorectal cancer diagnosis, and my ileostomy surgery. I’ve been able to share every high and low with him and having that kind of unwavering support has meant everything.

I am also incredibly grateful for my children, who are now twelve and fifteen. They supported me during my ileostomy surgery by listening and being aware, learning, and stepping up with independence when I needed it most. I am beyond grateful for their continuous love and care.

When I was younger, my parents were there for me every step of the way, offering their unconditional support. I also wanted to acknowledge the incredible medical teams I have had over the years, especially my GI doctor, whom I have been fortunate to know for the past 25 years.

My support system also extends to the social media community. Connecting with others who share their IBD journeys has been invaluable. It is empowering and comforting to talk to other individuals who understand that IBD is not a cookie cutter disease and that no single treatment works for everyone.

‍

5. Since your IBD journey began, you’ve grown so much and built a family of your own. How has motherhood or family life influenced the way you approach your gut health and self‑care?

When I was first diagnosed, there was not much available beyond standard Western medicine. As I got older, I began exploring natural remedies to learn how to support my gut health in terms of health, wellness, and food. Motherhood has only deepened my commitment. I encourage my kids to choose fewer processed foods and try healthier alternatives, and they have embraced it! Additionally, I find that having honest conversations with them about health and wellness to be extremely important.

6. Based on your own experiences with UC, your ostomy, and colorectal cancer, what message would you want someone who’s newly diagnosed or feeling alone to hear and hold onto?

For anyone newly diagnosed, I would want them to know that it is alright to take things one day at a time. Life with IBD is not easy, there are good days and some bad days. It is important to not push yourself past your limit because overdoing it can set you back. Listening to your body really does matter. Finding someone to talk to whether it be a support group, a trusted individual, a therapist, etc. can make a huge difference. Having these types of support will help with both symptom and disease management. Most importantly, you do not have to go through this journey on your own. Reaching out is not a sign of weakness, it simply makes the road ahead a little easier to navigate.

‍

‍

Nadia’s journey with IBD reflects remarkable strength, honesty, and a profound commitment to ensure that others never feel alone or isolated in their own experiences. Through the “Gutsy Girl Diaries”, she has created a space to share her story, raise awareness, and empower others to live fearlessly with IBD. Her unwavering dedication earned her the selection as Ostomy Canada Society’s inaugural Ostomy Ambassador in March 2024. Nadia’s story is powerful and inspiring, demonstrating that we do not need to hide or feel ashamed of our experiences with IBD. Her story reminds us that by sharing our experiences and supporting one another, we can come together as a community to break the stigma surrounding IBD and ostomy life.

Links!

The “Gutsy Girl Diaries”: https://gutsygirldiaries.com/

High- Protein Cloud Bread Pizza Recipe: https://www.instagram.com/p/DT9TSuskVmI/

LMNT Electrolytes: https://drinklmnt.com/?variant=16358367199266

Ostomy Canada Society Inaugural Ambassador: https://www.ostomycanada.ca/blog/2024/ostomy-ambassador-nadia/

Disclaimer: Please note that this blog post is for informational purposes only and should not be considered medical advice. For guidance specific to you or your child’s treatment plan, please consult your healthcare provider.

Note: If you’d like to share your own IBD journey, we’d love to hear from you! IBD Connect frequently connects with patients, caregivers, family members, friends, healthcare professionals, advocates, leaders, etc. for guest blog posts and interviews. Please feel free to reach out to Hannah Marmor, IBD Connect’s blog writer, via email at hannahmarmor@ibdconnectinc.org. Your story matters, and it has the power to inspire others.

‍