Powerful Lessons: How Women Experience Life With IBD Featuring Alicia Aiello of Girls With Guts

Episode transcript and more information at: https://bit.ly/AIBD207

Alicia Aiello, president of Girls With Guts, shares her journey with IBD, which began in childhood. She discusses major surgeries, including a proctectomy that resulted in an unexpected loss of her fallopian tubes and an ovary, and the early onset of perimenopause. Alicia opens up about navigating rectovaginal fistulas, feeling dismissed, and the importance of knowing when to switch providers.

What you'll learn:

• The impact of inflammatory bowel disease (IBD) on women's health.
• Why proctectomy surgery might be used, how it affects women, and some potential complications.
• The challenges of rectovaginal fistulas and their effects on intimacy and mental health.
• The importance of self-advocacy and seeking second opinions.
• Some of the gaps in healthcare for women with IBD, especially regarding reproductive health and menopause.
• The role of community support and organizations such as Girls With Guts.
• How multidisciplinary approaches are important in managing women's health issues.
• Some personal coping strategies and hobbies outside of IBD advocacy.
• Upcoming events and resources for women living with IBD.

Key Chapters & Timestamps:

• [01:12]: Introduction to Alicia Aiello, president of Girls With Guts (GWG).
• [03:01]: Alicia describes her abrupt diagnosis with ulcerative colitis at age 14.
• [04:36]: Alicia explains a proctectomy and details her surgical history, including rectovaginal fistulas.
• [07:26]: Alicia discusses her decision to seek a permanent ostomy.
• [09:19]: Alicia shares the unexpected outcome of her proctectomy surgery.
• [13:43]: Alicia talks about the lack of mental health support and reproductive care.
• [22:40]: Alicia shares the physical and mental toll of fistulas.
• [25:34]: Alicia offers advice on trusting your gut and advocating for yourself when you feel invalidated or rushed by a provider.
• [35:42]: Alicia outlines how providers can improve care for their patients.
• [38:24]: Gaps in care, including isolation and lack of information on aging with IBD.
• [40:49]: Alicia details the upcoming GWG annual retreat and highlights the Cedars-Sinai Women's Health Conference.
• [45:54]: Alicia shares about her hobbies outside of advocacy.

Resources:

• What is a Fistula? — Amber Tresca via Verywell Health: https://www.verywellhealth.com/what-is-a-fistula-1941776
• Girls With Guts retreat information and registration — https://girlswithguts.org/calendar/gwg2026/
• IBD & Women's Health Conference — https://www.eventbrite.com/e/your-life-your-hormones-your-ibd-womens-health-at-every-stage-tickets-1977517412815

Find Alicia Aiello at:

• Instagram: @alicia_aiello
• Facebook: @AliciaMarieAiello

Find Girls With Guts at:

• Instagram: @ibdgirls
• Facebook: https://www.facebook.com/IBDgirls
• TikTok: @ibdgirls
• LinkedIn: @ibdgirls
• Web: www.girlswithguts.org
• YouTube: @IBDgirls

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• YouTube: @MacCooneyComposer
• Theme music, IBD Dance Party, is from ©Cooney Studio.

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