Bowel Moments

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We were so excited to talk to Tina Aswani Omprakash this week! Tina is a powerhouse in our community and we loved hearing her IBD story and all of the awesome things she's been working on- and despite the super-sized episode, we just scratched the surface! We talked to her about her very complicated Crohn's and her other autoimmune conditions. We talked about her family history of IBD and how her culture shaped her disease journey and eventually motivated her to speak out via her popular blog called "Own Your Crohn's."  After she started speaking out more publicly, more and more people of  South Asian descent and even further afield started reaching out and thanking her for helping to demystify and destigmatize IBD. That prompted her to start a social media group (IBDesis) and the success of that motivated her and her team to start the South Asian IBD Alliance. We were so excited to hear about SAIA's mission and their amazing progress in such a short time.

We also talked to her about how she manages her symptoms with a team of folks including a therapist, pelvic floor physical therapist, acupuncturist, and more.  Her team helps her maintain her holistic wellness as well as her disease.

We know you'll be just as riveted as we were by Tina's story and all her accomplishments.

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Links: 

• An article on Pelvic Floor PT and IBD- American Physical Therapy Association
• Pelvic Floor Dysfunction and IBD video- Own Your Crohn's Blog/Crohn's & Colitis Foundation  
• Information on Paralytic Ileus- Cleveland Clinic
• Information on Ehlers-Danlos Syndrome type 3- Ehlers-Danlos Support UK
• Journal Article on Culturally Competent Care for South Asian Patients with IBD- Journal of Crohn's & Colitis 
• Journal Article- "Hospitalization Experiences and Post-Traumatic Stress in IBD: Opportunities for Change"- Authored by friends of the show- Dr. Tiffany Taft, Josie McGarva, and Tina! - Inflammatory Bowel Diseases

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We can hardly believe it but 1 year ago we published the first episode of Bowel Moments! Robin and I took this opportunity to reflect back on the last year, to talk about what we've learned, and to discuss how much we've loved working on this podcast.

We hope that you've enjoyed the last  year and that you'll join us for all our upcoming episodes too. Please find us on Instagram, Facebook, or Twitter to follow along with the fun! 

Thanks to our sponsor- Romanwell!
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This week we talk to Dr. Jami A. Kinnucan! Dr. Kinnucan is a Senior Associate Consultant at Mayo Clinic in Florida (or as she calls it- the Sandy Mayo) and she is an IBD specialist. She has a special interest in and researches cannabis and IBD and so we spend a lot of time hearing all about the limited research available and on the importance of talking to your doctor about cannabis use. It was really interesting to hear about the research that's been done but there's still so much to learn.

We also talked to her about her involvement with Scrubs & Heels which is a group for female GI providers that provides support, mentoring, and promotion of women in the field or looking to join the GI field. Their summit sounds so fun and we're totally holding Dr. Kinnucan to her promise to help us get an invite. Look for BM live at Scrubs & Heels in February 2023! ;)

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Links:
- Scrubs & Heels
- Information on Cannabis and IBD- Crohn's & Colitis Foundation
-  Video on Medical Cannabis and IBD- Crohn's & Colitis Foundation
- Video featuring Dr. Kinnucan- "CBD Oil and Cannabis for ulcerative colitis & Crohn's"

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This week we talked to Shawn Luna! Shawn was diagnosed with UC as an adult and it was a big surprise since he hadn't had any symptoms of it when he was younger. We talked about how quickly his UC came on, how scary it was to get diagnosed, and his struggles with pain and fatigue and to get into remission which lead to him being steroid dependent. As part of this process, his original gastroenterologist "fired" him and referred him to a IBD specialist and we talked to him about the difference in his care and how his new doctor got him into remission and helped him wean off of the steroids. Shawn was very open and honest about how he struggled with his mental health during the years when he wasn't in remission and how that affected his marriage, his parenting, and his sense of identity as a man and father. We were so impressed with Shawn's grit and positivity despite his difficult journey to remission and we love how he's used his experience to help other people struggling with IBD.

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Links:
- An interesting medical education module about steroids and IBD
- Crohn's & Colitis Foundation Hispanic Community Facebook Group
- A toolkit for talking to your children about your IBD- Crohn's & Colitis UK
- A toolkit for talking to your children about your IBD- IBD Clinic- University of Alberta
- Living with IBD: Pain & Fatigue- Crohn's & Colitis Foundation
- Managing Pain in IBD- Crohn's & Colitis Canada

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This week we talk to Megan Starshak! Megan was diagnosed with UC in high school and, while it compromised her ability to do some of her favorite activities for a while, it didn't prevent her from finding new ways to enjoy her life and even led to her meeting some new people affected by IBD. Megan has devoted much of her life to helping other people with IBD share their story, feel connected, and to feel a sense of community. She is one of the founders of the nonprofit The Great Bowel Movement and it's mission is to "foster conversations surrounding the complexities and realities of IBD, fueled by an empowered, active community of patients and caregivers like you." They started by selling cool, awareness-building shirts but it has grown to so much more.

We talk to Megan about her motivation to start her nonprofit, running and cycling and the communities she's built through those activities, how animals can be really important sources of support and motivation, her role developing and facilitating the Leader In Training program at a camp for kids with IBD, her struggles with insurance even thought she's in remission, and so much more. We enjoyed our conversation and our margaritas so much during this episode. We know you will too!

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Links: 

• A blog about support and comfort from a pet- Crohn's & Colitis Foundation  
• Information on Exercise and IBD- Crohn's & Colitis Foundation of Canada
• A great article on appealing insurance denials- IBD Advocate Extraordinaire- Amber Tresca! (Host of About IBD Podcast!)
• Information on Non-Medical Switching (Insurance companies asking you to switch to a different/generic/biosimilar medication for no medical reason)- Infusion Access Foundation 
• Advice on running with IBD from other runners with IBD- Crohn's & Colitis UK
• Ali On The Run podcast!- host lives with Crohn's and is a running enthusiast! 

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This week we talk to our friend Clayton Smith! Clayton is a self-described "autoimmune disease magnet" who lives with Crohn's, Celiac, Rheumatoid Arthritis, Lupus, a rare cardiac and soft tissue disease and who has also had 2 bouts with colon cancer. We talked to him about traveling to developing countries with IBD and how to prepare for that, we talk to him about rural vs. urban vs. tribal health systems, we talk about struggling with body image and mental health, we talk a lot about how running and getting involved in charity running events helped him connect with other people living with IBD (including Robin!), we hear some great stories about Robin, and we laughed a whole lot. We hope you enjoy our conversation with our talented friend as much as we enjoyed our 2 hours of recording.

Links: 

• An interesting journal article about traveling to developing countries with IBD
• LOTS of information on traveling with IBD- Crohn's & Colitis Canada
• Info on Colorectal Cancer and IBD- Crohn's & Colitis Foundation 
• IBD and Colon Cancer- Expert Q&A video - UChicago Medicine

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This week we shared an Earl Gray tea with Sari Grossman! Sari has a very unique case of Crohn's disease and she has a family history of Crohn's as well.  We talk to her about growing up with Crohn's and also having a mother who is living with Crohn's. We discussed how she started navigating her own healthcare in her teens (with her Mom's coaching) and how and when she transitioned to an adult provider. We talked about her involvement with a club at her college for students living with IBD and how that provided her with both support and leadership opportunities. We talked about her choice of a career in immunology and her hope for future treatments and about medical trauma and how she figured out she was struggling with it and how she got help. This was such a great conversation and Sari is such a grounded and remarkable young woman. I think you'll learn a lot for this episode and enjoy meeting her very much.

Links:
Navigating College with IBD- Crohn's & Colitis Foundation
IBD on the College Campus- Lights Cameras Crohn's Blog
Preparing for Adult Care- Crohn's & Colitis Foundation
A Checklist on Preparing for Adult Care- GIKids.org
Toolkits for Pediatric IBD Patients- Transitioning to adult care, Navigating college, and more! - Improve Care Now

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This week week we interview Jasmine Bouche- AKA JPouch Jasmine! She's the first guest we've had on that neither Robin or Alicia knew already! It was so fun to get to know her and to hear her story of getting diagnosed in college, navigating the social scene and college experience while also navigating the healthcare system- and during a pandemic! We talked a lot about her decision to do the JPouch surgery, how she found connections and resources to help her cope, and about why she started her social media page focusing on her JPouch.  Jasmine is in law school now and we know that she's definitely a woman to watch!

Links:
Navigating College with IBD- Crohn's & Colitis Foundation
Studying Abroad with IBD- Crohn's & Colitis Foundation
IBD on the College Campus- Lights Cameras Crohn's Blog
Video on JPouch Surgery- Crohn's & Colitis Foundation
Advice from a College Student About Navigating College with an Ostomy- The Mighty

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This week we talk to Stacey Calabro who has decided that makes her "Stacey C- The Deuce." Stacey has been living with IBD since she was in high school. She's been a social worker, probation officer, and finally her IBD prompted her to go to nursing school. She's done travel nursing and had some fun adventures because of it including some brushes with celebrities! We talked to her about what it's like to travel so often with IBD and live somewhere with less accessible healthcare, we discuss how IBD affects her joints and other illnesses, we talk about how she found her IBD family through support groups and volunteering with a camp for kids with IBD, and how she's basically famous. We laughed SO hard during this episode. I know you'll love Stacey C The Deuce as much as we did.


Links:
7 Tips for Traveling with IBD from Someone Who Gets It- Own Your Crohn's
Traveling with IBD- Crohn's & Colitis Foundation
Traveling with IBD- Canadian Society of Intestinal Research
Extraintestinal Complications of IBD- Crohn's & Colitis Foundation
Preparing for a colonoscopy- Crohn's & Colitis Foundation

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This week's episode was SO FUN! Robin and I got to record in the same room after not getting to meet up for more that 2.5 years! AND we had the joy of talking with Eitan Kling-Levine! Eitan is a young professional living with NYC and working in healthcare marketing. After growing up in the theater, he attended NYU for acting, and during senior year, got diagnosed with ulcerative colitis. This began a long road of intense sickness and treatment. After a year of complications and trying various therapies, he ultimately decided on having a three-part surgery. Following the year-long recovery, he was able to move back to NYC, and thankfully  has been able to live life to the fullest ever since. Most recently, he got engaged, and is excited to marry his life partner in July 2023. We talked about living and dating in NYC (and how hard it may be to find a bathroom!), we talked about his surgery experience, the French healthcare system, his foray into legislative and personal advocacy, his career moves, talking about sexuality with your GI, and our mutual love of Sauvignon Blanc.

Links:
Restroom finder app- Crohn's & Colitis Foundation
Get involved in IBD Advocacy- Crohn's & Colitis Foundation
Sex, Intimacy, and IBD Factsheet- Crohn's & Colitis Foundation 

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