Navigating IBD: A Journey of Advocacy and Empowerment

Blue Charm conducted an interview with Nadia Di Rienzo, the founder of "Gutsy Girl Diaries" on Instagram. This interview delves into her journey with Inflammatory Bowel Disease (IBD) and her path to advocacy. Nadia's diagnosis came swiftly, just before her sixteenth birthday, but lacked the initial support and resources she later sought to provide through her platform. Through her experiences navigating treatment options and overcoming challenges, Nadia's story serves as a beacon of empowerment and community support for those facing similar struggles.

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Q: Can you explain to us what life was like before you were diagnosed with IBD? Were there always symptoms, or was there a point in time where things were starting to change?

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A: I was diagnosed just before my 16th birthday. A few months prior to being diagnosed I noticed some changes when I would go to the bathroom or I would experience different feelings and pain in my abdominal area. My parents took me to the doctor to get me checked out, which led to me having a colonoscopy scheduled right away. 

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Q: How long did it take to be diagnosed with IBD and what was the process like? 

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A: After I had the colonoscopy, I was diagnosed with IBD very quickly. For me personally, I had a great experience with my physician and the process unlike other individuals I have spoken to with IBD who have explained to me that it took them years to receive a proper diagnosis. However, for me, it wasn’t that way. My symptoms were quite severe when I saw the gastroenterologist, so it was pretty evident what my diagnosis was. 

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Q: Throughout living with IBD, did you ever find it difficult to seek help or gain access to resources (ie. additional education or medical support)? Was there anything you have wished the healthcare system could improve on to make your experience with IBD better? 

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A: When I was first diagnosed with IBD, there wasn’t really anything out there in terms of support or resources other than your relationship with your doctor. As for information on alternative methods (other than medication), such as diet or natural remedies, that was hard to come by. Trying to figure out if I had a food sensitivity was really difficult with limited information and support. I didn’t know how to navigate or handle the situation since I was really young. 

That is what ultimately pushed me to advocate for others with IBD, because I don’t want anyone else to have a similar experience that I did. With the stigma attached to IBD, no one really wants to talk about it and I kept my diagnosis a secret for many years.

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Q: Throughout your journey, have you tried natural remedies for IBD instead of medication? If so, can you share your experience with that?

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A: So for me personally, I want to say I don’t believe IBD is a "cookie cutter" disease. What might work for me, may not work for others, and vice versa. I really think it is important to explore all of the options available to you. I used to be against medication for a long period of time until I hit rock bottom with my IBD, to the point that my quality of life was severely impacted. My daughter was only a year old, I was just going back to work and I had one of the worst flares I’ve ever had that I was trying to manage naturally. Unfortunately, it just wasn’t working. I ended up having to go on medication and it ended up changing my life for the better. I think in the end, from personal experience, you have to do what is right for you and your body and what will give you the best quality of life. 

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Q: What has life been like living with IBD, how has your diagnosis progressed? Did you find it difficult to get control of your disease? 

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A: A struggle that I have had with IBD is that it is a constant rollercoaster. There were times where I would have a flare every month and then sometimes I could go a couple of years without having a flare at all. As I got older, it was really important for me to be able to identify my triggers (food or emotional), which helped me better manage my disease. I have also tried different medications, clinical trials, and natural remedies as explained before. Unfortunately, I was diagnosed with colorectal cancer, and now I have an ostomy as a result of that. But I don’t have any regrets with my IBD journey. 

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Q: You have a great platform on Instagram called, Gutsy Girl Diaries. Can you tell me a little bit more about that? 

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A: I started Gutsy Girl Diaries in March 2018 during a very severe flare. It motivated me to share my story and be open about my IBD in hopes of helping others and giving people a voice that I didn’t have when I was first diagnosed. I have made so many great connections and have been able to collaborate with a number of brands that I love and support, even pre-Gutsy Girl Diaries. It has really opened my eyes to other people's journeys and experiences and fortifies that saying IBD is not cookie cutter and everyone’s disease is so different. 

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Being diagnosed with IBD, I did everything I could to try to avoid having surgery for an ostomy. The discussions with my doctor revolved around avoiding surgery at all costs. If a medication didn’t work, I would try the next one or try a different regimen to try to get myself into remission instead of having surgery. When I was diagnosed with colorectal cancer and I knew I was going to have to have an ostomy, my focus wasn’t even on the fact that I had cancer, it was focused on the surgery and that I would have an ostomy. So that was really hard for me. I always used to wear clothes that would cover my ostomy, and with seeing other creators out there on social media showing theirs, I decided that I was going to do that too and it was actually quite freeing. Gutsy Girl Diaries allows me to be that person for someone else and realize they aren’t alone in this.

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Nadia explained that she welcomes messages from followers as she finds a lot of comfort in sharing her journey with others and being that person for someone to relate to and understand what they’re going through. 

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Q: How do you feel Blue Charm and your platform align? 

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A: Our platforms align because I am all about patient advocacy and having the strength to advocate for yourself and I feel like Blue Charm encompasses that. Looking at your Instagram and website, our vision is the same and that is to help people. 

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Q: What is one message you would love to share that maybe you have learned throughout your journey that you would like others to know? 

‍A: Not to look at your diagnosis as a burden but to use it as fuel to learn about it and share your journey with those who support you. It doesn’t have to be on social media or publicly, but just make sure you are surrounded by a group of people who support you so you don’t feel alone in it.