spotlight on resilience jack mouchs ibd journey

This month, we're excited to feature Jack Mouch, a remarkable mentor and advocate whose journey with IBD has shaped his passion for helping others. Diagnosed with ulcerative colitis at just 4 years old, Jack has faced numerous medical challenges, including a colectomy at age 7, living with an ileostomy in 2009, and undergoing J-Pouch reconstruction in 2010. After several years of remission, Jack experienced a flare-up in 2015 and has since endured four small bowel obstructions between 2021 and 2024. These experiences, along with his dietary modifications and newfound interest in nutrition, have fueled his desire to mentor and support fellow IBD patients. As Jack prepares to take on a role in IBD Connect's Virtual Young Adult Support Group, we are thrilled to share his inspiring journey and the impact he's making in the IBD community! Please enjoy this interview!

Can you share more about your diagnosis of ulcerative colitis at such a young age and how that impacted your early childhood?

Being diagnosed with ulcerative colitis at age 4 was challenging for me and my family. I recall feeling a strong urge to fit in with my peers, but having IBD made that difficult at times. There were moments when I felt different, particularly after recovering from the colectomy. For example, it was difficult to participate fully in recess and PE after the colectomy, and I often felt left out because I couldn't do everything my friends were doing. Despite this, having IBD helped me develop resilience at a young age, which I am very grateful for.

What was the experience of undergoing a colectomy at age 7 like for you and your family, and how did it shape your perspective on living with IBD?

I was out of school for a while during my recovery, but when I returned, I remember being met with overwhelming kindness and support. My teacher explained to my classmates what I had gone through, and many of my classmates were very thoughtful and considerate. Having the colectomy at a young age also made me grow up faster in some ways. I realized that I had to accept my condition, and even though it was tough, I think the experience helped me build resilience and shape my outlook on life.

After living with an ileostomy in 2009, what was the transition like when you had your J-Pouch reconstruction surgery in 2010?

The transition was significant. Living with an ileostomy came with its own set of challenges, such as adjusting to the bag and changes in my daily routine. When I underwent J-Pouch reconstruction in 2010, it felt like a fresh start in some ways. I had to learn how to manage the new functionality of the J-Pouch, but it ultimately gave me more freedom and a sense of normalcy in my life.

You mentioned living in remission until 2015. How did that period of stability affect your outlook on IBD, and what were your thoughts when you experienced a flare-up again?

For many people in remission, it can feel like you've almost forgotten about your IBD, and I was no different. From 2010 to 2015, I felt like my life was back to normal. I didn't have to think about my illness as much, and it gave me a lot of freedom to focus on other things. When I experienced a flare-up in 2015, it was a bit of a shock. It reminded me that IBD is unpredictable and that remission doesn't mean the disease is gone forever. The experience pushed me to rethink how I manage my health, particularly in terms of adjusting my diet.

How have the small bowel obstructions you've experienced from 2021 to 2024 impacted your daily life, your nutrition, and your overall approach to managing IBD?

The small bowel obstructions were a wake-up call for me. They've made me much more mindful of what I eat and how my body reacts to different foods. I focus on eating foods that are easier on my digestive system, and I've incorporated healthy juices, such as juices that include kale, spinach, celery, and cucumber, into my weekly routine. Although the small bowel obstructions were difficult to go through, they prompted me to re-evaluate my diet, and I am now more conscientious about the foods I eat. I believe this has made me healthier overall – somewhat of a silver lining.

Can you describe your motivation to become a mentor and advocate for other IBD patients? What does it mean to you to support others going through similar experiences?

Growing up, I didn't have anyone who had been through the same things I was going through, and I often wished I had a mentor to guide me. That's what motivates me now. I want to be that support system for others, especially for younger patients who might feel lost or overwhelmed. Managing IBD can be an isolating experience, and I think having someone to talk to who truly understands can make a world of difference. It's very rewarding to be able to offer advice, share my experiences, and help others feel less alone on their journey with IBD.

How do you envision your role in the Virtual Young Adult Support Group at IBD Connect? What key insights or advice do you hope to offer?

In my role at the Virtual Young Adult Support Group, I hope to offer a sense of community and understanding to young adults managing their IBD. My key advice would be to focus on managing not just the physical aspects of IBD, but also the mental and emotional aspects as well. I've learned over the years that it's just as important to take care of your mental health, and I want to help others recognize that, perhaps through introducing a mindfulness exercise to the meetings. I also hope to encourage young adults with IBD to feel empowered and to advocate for themselves in medical settings. I think adding IBD education to the meetings will help them develop their understanding of their condition and will hopefully help them make informed decisions about their health.

What challenges do you think young adults with IBD face, and how do you think the Virtual Young Adult Support Group can help them navigate those challenges?

Young adults with IBD often face the pressure of trying to balance their health with major life events, such as starting college, beginning a career, or forming relationships. There's an unhealthy belief regarding the need to have everything figured out as a young adult, and adding a chronic illness into the mix can make that even harder. The Virtual Young Adult Support Group provides a space where young adults with IBD can talk about their challenges without judgment and learn from each other's experiences, which I think will be very helpful for their personal development.

How has your experience with IBD empowered you, and how do you hope to use that empowerment to potentially contribute to IBD Connect's Empowerment Program and/or support others facing similar challenges?

My experience with IBD has taught me that I am stronger than I realized. Overcoming the physical and emotional challenges that IBD presents has given me a sense of empowerment that I hope to pass on to others. Through IBD Connect's Empowerment Program, I want to help others recognize their own strength, and show them that they can live fulfilling lives despite having IBD.

What message of hope or piece of advice would you give to pediatric IBD patients and their families who are just beginning their journey with IBD?

My message to pediatric IBD patients and their families would be to stay hopeful and optimistic. There are so many resources and support systems available now that didn't exist when I was first diagnosed. You're not alone in this journey, and while it can be tough at times, there are many individuals and organizations eager to help. Celebrate the small victories, and never be afraid to reach out for guidance and support!

Jack's journey is a powerful testament to resilience, growth, and the impact of community support. His dedication to mentoring others facing similar challenges is truly inspiring, and we are thrilled to have him join our IBD Connect family! As Jack steps into his role with the Virtual Young Adult Support Group, we know that his insights and compassion will make a lasting difference in the lives of young adults navigating their own IBD journeys. Thank you, Jack, for sharing your story and for all that you do to empower others! If you'd like to learn more about IBD Connect's Virtual Young Adult Support Group, you can click the link below for more information. This link will have the contact information for the group's facilitator, Laura, should you have any questions or concerns. This group meets monthly and to join a meeting, be sure to keep an eye out on our social media platforms or our main website for the date of the next meeting and the current registration link. IBD Connect's Empowered by IBD Program was also mentioned during this interview. If you'd like to learn more about this program and how you can make a difference, please click the link below. And remember, no matter where you are in your IBD journey, you are never alone! As always, stay strong IBD Warrior families!