I was thinking about why role models matter the other day. About the influence of mentors in the lives of kids and teens living with chronic illnesses. They help us feel secure and empowered, like we matter. That there is someone who cares and assures us we’re not alone in our struggles.
Young kids and teens who have endured years of sickness and are living with an ostomy face additional challenges that come with discovering themselves, so finding people to look up to is especially important during this influential time. Here are seven inspiring young ostomates who are great role models because they are passionate for a cause.
1. Shelby Hansen, 18
Shelby Hansen was diagnosed with Crohn's disease when she was 9-years-old. For the next nine years, she lived with chronic pain and endured numerous medical treatments. Ultimately, she had ileostomy surgery in 2011 when the disease progressed and medications stopped working. As a new ostomate, Shelby developed a passion for helping others by talking to nurses and patients about her experiences. She is extremely compassionate toward other ostomates because she can relate to their struggles. A firm believer in the importance of a good support system, Shelby believes that the people who love you will be with you through the good and bad.
“I have an ostomy and am not ashamed of it because I got my life back. My life will never be the same as before, but I know God has used my faith in Him to help other people.”
– Shelby Hansen
2. Caitlin Skeens, 27
Caitlin lives with ulcerative colitis and a permanent ileostomy. She has experienced many complications and undergone numerous surgeries as a result of her illness. Caitlin has faced and overcome many complications including bowel obstructions, gallstones and abscesses which taught her to be her own advocate. She's learned to listen to her own body and speak up when she needs help. Caitlin advocates for ostomy awareness and chronic illnesses through support groups, donating ostomy supplies, and being open about her experiences. She draws inspiration from other people who are living confidently with their ostomy and is outspoken about accepting, embracing and overcoming challenges. She wants other young ostomates to know that it’s okay to be frustrated and scared, but realize that they are not alone.
“I've faced many challenges, from leaks in public to telling friends or significant other about my condition. It sounds crazy, but practicing helped me in those situations. The more I learned how to change my ostomy in public, the better I got, and the less frustrated I became. The more people I told about my ostomy, the easier it got. Fear is always there, but it gets easier to face the more you do it.”
– Caitlin Skeens
3. Nicole Mangiaracina, 24
Nicole is a nursing student living with Ehlers-Danlos Syndrome. As a result of EDS, she developed severe colonic dysmotility and now has a permanent ileostomy. She gives back to the ostomy community by volunteering at Youth Rally, a camp for kids with bowel and bladder conditions. She credits Youth Rally for fostering her passion of supporting and helping others with chronic illness. A strong believer of sharing her experiences, Nicole helps young campers learn independence with managing their ostomies and illnesses. She also makes YouTube videos documenting her experience living with an ostomy and feeding tube. She networks with other ostomates who have helped her learn that having an ostomy does not stop you from achieving your dreams. She bases her advocacy work around community and mutual support.
“It's inspirational to know that there are other people out there my age, and even younger, that have ostomies and lead successful lives.”
– Nicole Mangiarancina
4. Chloe Moody, 18
Chloe has lived with necrotizing enterocolitis since she was born and has had a colostomy for her entire life. Living with short bowel syndrome and an ostomy requires her to be attentive to her nutrition, hydration and listening to what her body needs. She understands what it’s like to live with fluctuating health and chronic fatigue as a teenager. Like other ostomates, she wants people to know that while she may look and act normal, she faces hurdles with her health and chronic condition every day. Chloe advocates for ostomies and rare diseases by sharing her knowledge and experience on social media. She is also active with her local UOAA chapter support group and volunteers at ostomy conferences. The ostomy community helped her learn independence and she’s committed to give back by raising awareness — especially for other young ostomates. Chloe cites the ostomy community for sparking her passion for advocacy. She wants other young ostomates who are struggling to know that even though they may live with extra challenges, they have the power to be independent, successful, and live a full life.
“Something that inspires me about the ostomy community is the way we help each other through sharing our experiences. Learning everyone's story is so inspiring to me. Meeting people who have gone through so much and who share their wisdom is priceless, so I try to do it as well.”
– Chloe Moody
5. Cody Mitchem, 20
Cody has Crohn’s disease and does not hide this condition. Instead he willingly educates people about Inflammatory Bowel Disease and other chronic conditions. He believes that the best way to erase the stigma surrounding chronic illnesses and ostomies is to talk openly about it. Inspired by others living with IBD, Cody works diligently to create an open dialogue about the challenges and victories of this invisible illness. After attending Youth Rally as a camper, he now volunteers as a camp counselor to help inspire kids and young teens. He has an optimistic perspective on life, as well as being honest about the trials he faces. Cody believes that a good support system is crucial to adapting to life with a chronic illness and ostomy.
“A good support system consists of friends and family who understand your ostomy and treat you the same, but know when to help you a little more. They tell you that you can do anything you want but know when to check in with you about things you can and can’t do.”
– Cody Mitchem
6. Austin Vickery, 17
Austin was born with VATER syndrome. As a result of his condition, he has a Malone ostomy that requires lengthy nightly treatments. Austin understands the frustrations that can come with having an ostomy and illness, so he chooses to support others by sharing his experiences on Facebook. A regular attendee at Youth Rally, he often wears his Rally t-shirts and loves to talk with people about the camp – a group he considers to be his second family. Austin also attends ostomy support groups where he is open about what he endures. He relates to ostomates who were hesitant and scared to have the procedure, but later are thankful for the ostomies and are happy with their decision. Austin recognizes that the choice to have ostomy surgery is very difficult and full of uncertainty since everyone deals with the emotions of having a stoma differently. He wants ostomates and their loved ones to know that it’s okay to struggle with acceptance. Austin believes that patience, kindness and empathy goes a long way when supporting a loved one with a chronic illness and ostomy.
“I think people should know that all of us didn't choose to have this and we are forced to deal with it and we all deal in different ways.”
– Austin Vickery
7. Jakob Kehr, 19
Jakob was diagnosed with ulcerative colitis as a teen and has a permanent ileostomy as a result. He is grateful for the ostomy surgery that gave him his life back and allows him to pursue his dreams of becoming a professional pilot. Jakob says that being thrown into a challenging medical condition at such a young age has helped him learn important life lessons. Not letting his illness or ostomy hold him back, Jakob is a passionate Youth Rally volunteer and career-focused college student. He's an ostomy advocate at local WOCN conferences and is currently in the process of starting his own fundraising program for chronic illnesses. Jakob wants others that are struggling to know they can still achieve their goals despite any medical condition.
“Everyone has a unique purpose and contribution to the world.”
– Jakob Kehr
The message these young ostomates send is loud and clear — anyone can make a difference in the world and pursue their dreams regardless of the challenges they face.