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

About IBD

08/11/26

•

49m

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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:

Find Alicia Aiello at:

Find Girls With Guts at:

Find Amber J Tresca at:

Find Mac Cooney (mix, sound design, and theme music) at:
  • Facebook: @maccooneycomposer
  • Instagram: @maccooneycomposer
  • Web: Cooney Studio
  • YouTube:

    Previous Episode

    undefined - Hidden Ways IBD Affects You Over a Lifetime With Puja Khanna, MD
    Hidden Ways IBD Affects You Over a Lifetime With Puja Khanna, MD

    July 21

    •

    41m

    The truth about inflammatory bowel disease (IBD) is that it goes beyond the gut. In this first ever live recording of About IBD, Amber talks with Dr. Puja Khanna from Cedars-Sinai to explore the extra-intestinal impacts of IBD, from skin conditions and eye inflammation to debilitating fatigue. Learn how sex-specific factors affect women and why building a multi-disciplinary care team is the best strategy for long-term health.

    Episode transcript and more information at: https://bit.ly/AIBD206

    Chapters:

    • (00:01): Amber introduces the first-ever live recording of the "About IBD" podcast, recorded at an event in Los Angeles.
    • (01:31): Amber and guest expert Dr. Puja Khanna are introduced, detailing their backgrounds and expertise in the IBD space.
    • (03:26): Dr. Khanna discusses common extra-intestinal manifestations of IBD, including issues with the eyes, liver, skin, and joints.
    • (05:45): A discussion on how women are uniquely affected by IBD, including hormonal influences during puberty, pregnancy, and menopause.
    • (06:30): Dr. Khanna explains the importance of a multidisciplinary care team and open communication with your gastroenterologist about all symptoms.
    • (08:00): The importance of discussing reproductive health early, even in adolescence, to gather information and make informed decisions later.
    • (10:18): Dr. Khanna offers advice on managing fatigue by addressing sleep, mood, nutrition, and energy conservation, even when labs are normal.
    • (14:23): Amber and Dr. Khanna discuss the fine line between pushing through illness and recognizing one's capacity to avoid overexertion.
    • (15:47): Dr. Khanna advises focusing on trends rather than daily details to avoid anxiety while still providing useful data to doctors.
    • (20:04): Guidance on when to send a portal message versus seeking immediate care, emphasizing that patients should not hesitate to reach out.
    • (22:41): How patients can understand that issues like joint pain or eye problems can be connected to their IBD.
    • (26:01): Dr. Khanna explains the detective work involved in distinguishing between medication side effects and extra-intestinal manifestations of IBD.
    • (30:00): Dr. Khanna discusses a multidisciplinary treatment approach that incorporates nutrition, mental health, and physical therapy alongside medication.
    • (32:27): A discussion on the long-term safety of modern IBD medications and the genetic risk of passing Crohn's to children.
    • (35:34): Dr. Khanna explains the role of diet, the microbiome, and specialized nutrition in managing IBD for human patients.
    • (38:31): Dr. Khanna shares personal details about her family, her life in Southern California, and her experience as a triathlete.

    Concepts discussed:

    Find Dr Puja Khanna at:

    Find Amber J Tresca at:

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

    Next Episode

    undefined - The Truth About How IBD Affects Families With Adam and Brandon Sikes
    The Truth About How IBD Affects Families With Adam and Brandon Sikes

    August 18

    •

    31m

    Adam Sikes was diagnosed with ulcerative colitis at 18 and later with stage 1 colon cancer. Along with his son Brandon, Adam shares how his family supported him through decades of illness, surgery, and recovery with a J-pouch. Adam and Brandon highlight how IBD affects families, the importance of screening, and the power of community support through groups such as Connecting to Cure.

    Transcript and more information available at: https://bit.ly/AIBD208

    Chapters:

    • [00:02:12] — Adam discusses his diagnosis of ulcerative colitis at age 18.
    • [00:04:05] — Adam describes his colon resection surgery after a perforation.
    • [00:06:17] — Brandon shares his childhood memories of his dad's symptoms.
    • [00:08:04] — Brandon recalls learning about his dad's cancer diagnosis.
    • [00:10:50] — Adam explains how a colon cancer diagnosis led to j-pouch surgery.
    • [00:14:15] — Brandon describes the changes in family life after his dad's j-pouch surgery.
    • [00:17:05] — Adam talks about his concern that his sons might inherit IBD.
    • [00:19:12] — Adam and Brandon discuss the importance of getting involved in advocacy.
    • [00:23:56] — Brandon shares how he became involved with Connecting to Cure.
    • [00:27:08] — Adam shares how pouch surgery has given him a new lease on life.
    • [00:28:21] — Brandon outlines how to engage with Connecting to Cure.

    What you'll learn:

    • The role of family dynamics in managing chronic illness.
    • The involvement of children in patient education and advocacy influenced by a parent's health journey.
    • The importance of early screening and awareness for inflammatory bowel disease (IBD).
    • The challenges of living with a chronic illness and the need for better support and resources.
    • The impact of j-pouch surgery on quality of life and family interactions.
    • How community groups like Connecting to Cure help families cope with IBD.
    • The influence of chronic illness on the aspirations and career choices of family members.
    • The importance of understanding medical conditions and procedures through research and education.

    Find Adam Sikes at:

    Find Brandon Sikes at:

    This episode sponsored by Connecting to Cure Crohn's and Colitis:

    Find Amber J Tresca at:

    Find Mac Cooney (mix, sound design, and theme music) at: These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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