These Girls Have Guts!

Women with IDB and ostomies face significant stigmas. Find out how the nonprofit organization Girls with Guts supports and empowers them with tools, resources, and connections.

Girls with Guts challenges the "unladylike" stigmas around IBD and ostomies

The stigmas surrounding inflammatory bowel disease (IBD) and ostomies remain a significant social issue for women, despite the fact that this diagnosis or surgery is common and can occur at a young age. This situation can be further complicated by societal expectations of beauty and behavior that might frown upon bathroom talk. Girls With Guts (GWG) aims to ensure that women with IBD and ostomies know their value as a woman is not diminished. Instead, GWG welcomes them into a community that fosters connection, self-confidence, and self-advocacy.

Girls With Guts is a 501(c)(3) nonprofit organization whose mission is to support and empower women with IBD and/or ostomies by building sisterhood and self-esteem. It strives to make a meaningful impact on the lives of these women by providing them with the tools, resources, and connections they need to cope with their diagnosis and the challenges of daily life with chronic illness, including:

• Mental health resources
• Self-care resources
• Advocacy strategies
• Patient education tools for medical decision-making
• Information about medications, IBD and pregnancy, and surgeries

“Women come to Girls With Guts from all parts of the IBD and/or ostomy journey,” explains Kristen Weiss Sanders, Director of Development, who is also a third-generation IBDer with a permanent ostomy. “Some are struggling with learning to love their new post-op bodies. Some are struggling with the weight of chronic illness on their professional and family lives. Some have been diagnosed for years, but still feel isolated, despite support from healthy family and friends. What they all find with GWG is a community of women ready to listen, support them, offer advice, and above all, remind them that they aren’t alone."

Girls With Guts also offers a broad array of events and programming to meet the needs of their community, including:

Annual Retreats
Each year GWG hosts an initiate New Attendee Retreat and a larger Annual Retreat. Held at various camp-like locations across the United States, these retreats offer a chance for GWG community members to connect in-person with each other, and with doctors, social workers, and other clinicians to talk about the current trends in the IBD community. Women bond with each other through team building exercises and fun recreational activities, such as yoga, high ropes courses, and even a Halloween costume contest.

Post-surgical Butt Baskets
GWG raises funds and partners with various companies who give donations to create custom packs of IBD-related goodies called “Butt Baskets” for women who are either undergoing or recovering from ostomy surgery. These packs are perfect for a purse or a car glove compartment, particularly in the early post-op days. Each pack includes a card written by another GWG member providing personal support and encouragement. A woman can fill out an application to receive a Butt Basket for herself or someone can apply on her behalf.

Philanthropic Ostomy Outreach Program (POOP)
POOP is a partnership between GWG and Kindred Box, another woman-run organization, where women with ostomies can donate their unused ostomy supplies to those in need. For the many women who have a temporary ostomy that is later reversed, this program is a way for them to pass along their excess items without them going to waste. Products are then distributed to individuals without insurance or steady access to these essential supplies.

In addition to these programs, GWG has a vibrant social and digital community that enables connection and education:

• An online blog dedicated to sharing stories of empowerment, struggles, and triumphs by a diverse group of contributors. The blog also includes an “IBD Academy” educational series that provides an overview of IBD basics, guides to current diagnostics and treatments, and highlights of new research in the field.
• A Private Facebook Forum enabling women to make connections, share stories, and ask questions in a positive and productive setting. GWG recently added a private Teen Forum to make a similar space for teens.
• A GWG Map Application which helps connect women from around the country, and facilitates in-person meet-ups with other GWG sisters locally and while traveling. Women can browse for other members in their area and instant message them within the app.

If snail mail is more your style, GWG has a Pen Pal program that connects members with another woman of a similar age and diagnosis to exchange cards, gifts, and words of encouragement via traditional post. A subprogram called Pen Pal Angels offers support for women who are going through a difficult surgery, hospitalization, or other exacerbation of their IBD.

Through these and other activities and platforms, Girls with Guts has built a strong community with a powerful voice that can stand in the face of stigma and taboo to normalize the conversation about IBD and ostomies.

To learn more about Girls with Guts, visit: www.girlswithguts.org

Follow Girls with Guts on social media: @IBDgirls on Facebook or @ibdgirls on Instagram