Podcasts about short bowel syndrome

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. This episode features Dr. Paul Wales, MD, MSc, reviewing the considerations in pediatric versus adult patients with SBS. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US March 2025

In this episode of Nutrition Pearls: the Pediatric GI Nutrition Podcast, co-hosts Bailey Koch and Nikki Misner speak with Gina O'Toole, MPH, RD, CSPCC, CLEC. Gina O'Toole received her B.S. from Seattle Pacific University in Exercise Science and Physical Education and went on to receive her Master's in Public Health and Nutrition from Loma Linda University. Gina is a Board Certified Pediatric Critical Care dietician and Certified Lactation Educator Counselor. Gina has been working in a Level IV Neonatal Intensive Care Unit (NICU) at CHOC Children's Hospital in Orange, California for almost 15 years. She has been instrumental in the institutional development of care guidelines and human milk advocacy for preterm infants, infants with short bowel syndrome/intestinal failure and those with complex surgical diagnoses. When she is not working with the babies, she loves to spend time with her husband and 3 children Lola, Brooklyn and Ellis. You will find them outdoors gardening, at the beach, camping, hiking, climbing or biking!Nutrition Pearls is supported by an educational grant from Mead Johnson Nutrition.Resources:American Society for Parenteral and Enteral Nutrition (ASPEN) - Parenteral Nutrition ResourceASPEN Pediatric Intestinal Failure Section Produced by: Corey IrwinNASPGHAN - Council for Pediatric Nutrition Professionalscpnp@naspghan.org

Ever seen a patient need HUGE amounts of their intestine removed because of an awful foreign body? Or an intusussception? If so, you may well have come across short bowel syndrome before (and if you haven't, bank this info, because you'll likely need it in the future). Short bowel syndrome is a severe disorder that occurs due to massive intestinal resection. These patients can't absorb water, electrolytes and nutrients from their food, causing significant changes in their hydration, electrolyte and nutritional status - amongst many other things. They're incredibly challenging to manage, and they need intensive nursing care - which gives us a LOT of ways to help them, and many skills we can use in the process. In episode 59 of the Medical Nursing Podcast, we're diving into exactly what SBS is, how it impacts our patients, and (most importantly), how we can give them great nursing care. ---

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. Episode 10 features Dr. John DiBaise, wrapping up this series and tying together the topics and future research needs. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US February 2025

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. This episode features Marion Winkler, PhD, RD, and Swapna Kakani, MPH, focusing on quality of life in adult patients with short bowel syndrome. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. QOL Resources: HPN-PRQOL: hpn_proq_.pdf The Gutsy Perspective: project news | the gutsy perspective Oley Foundation: www.oley.org Short Bowel Syndrome: Where to find support, information, and community Let's Talk SBS Conversation Guide PDF Let's Talk SBS Appointment Checklist PDF QOL References: Fu M, Shi M, Li M, He G. The experience and needs of living with home parenteral nutrition in adult patients: A meta-synthesis of qualitative studies. Journal of Clinical Nursing. 2024;33:4468-4483. Winkler MF, Machan JT, Xue Z, Compher C. Home parenteral nutrition patient-reported outcome questionnaire: sensitive to quality of life differences among chronic and prolonged acute intestinal failure patients. J Parenter Enteral Nutr. 2021;45(7):1475-1483. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US February 2025

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. This episode features Vanessa Kumpf, PharmD, Swapna Kakani, MPH, and Marie Neumann, MA, focusing on the patient and family-centered approach in the management of short bowel syndrome. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Recommended Patient Resources: National Cancer Institute's Patient-Centered Communication in Cancer Care – Promoting Healing and Reducing Suffering SBS Conversation Guide: Let's Talk SBS Conversation Guide PDF Let's Talk SBS Appointment Checklist PDF G.U.T. Gain Understanding of Transitions – A Guide to Key Milestones in Short Bowel Syndrome: • Key milestones include with the addition of a glossary and several resources: • Basics of Short Bowel Syndrome • Going home (ie Discharge Checklist, Adjusting to Life at Home) • Off to School (ie Communicating with School Staff & Preparing for Emergencies) • Adolescence (ie Addressing Concerns and Emotional Struggles and Fostering • Independence with Healthcare Team) • Transitioning to Adult Healthcare The Gutsy Perspective: community-driven research on life with SBS | the gutsy perspective Patient-Centered Outcomes Research Institute (PCORI): https://www.pcori.org/ The Promise of Patient-Led Research Integration into Clinical Registries and Research Scorecard: Patient Engagement Management (PEM) Suite: https://pemsuite.org Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US January 2025

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. This episode features Dr. Ankita Sisselman, focusing on medication management of short bowel syndrome. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US December 2024

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. Episode 5 features Dr. David Mercer, focusing on surgical considerations in the management of short bowel syndrome. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US December 2024

Episode 24 - Liz King - Navigating Nutrition with Short Bowel SyndromeIn this episode of Nutrition Pearls: the Podcast, co-hosts Melissa Talley and Nikki Misner speak with Liz King about nutrition management in the short bowel syndrome pediatric patient population. Liz King is a Registered Dietitian and board-certified nutrition support clinician at UPMC Children's Hospital of Pittsburgh. Liz received her BS in Nutrition from Auburn University and went on to complete her MS in Nutrition and dietetic internship at the University of Pittsburgh. For the past 9 years, she has been the dietitian for the Intestinal Care and Rehabilitation Center (ICARE), which was the first established comprehensive,  multidisciplinary intestinal failure center caring for patients with complicated intestinal disorders. She also works with the liver and small bowel transplant department at UPMC Children's, overseeing the nutritional needs of patients undergoing transplant. Liz's nutritional interests include chronic TPN management and babies starting solids.Nutrition Pearls is supported by an educational grant from Reckitt Mead Johnson Nutrition.Resources:Walia et al.  The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition Position on the Role of the Registered Dietitian Nutritionist in the Care of the Pediatric Patient With Chronic Gastrointestinal Diseases. J Pediatr Gastroenterol Nutr. 2023;76(3):390-399.Produced by: Corey IrwinNASPGHAN - Council for Pediatric Nutrition Professionalscpnp@naspghan.org

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. Episode 4 features Carol Rees Parrish, MD, RDN, focusing on nutrition and hydration management in short bowel syndrome. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. Favorite Resources from Carol Rees Parrish MS, RDN: For Professionals: Learn Intestinal Failure TeleECHO (Lift-Echo): https://liftecho.org/web/home UVA Health: https://med.virginia.edu/ginutrition/articles-from-practical-gastroenterology/pg-articles-by-topic/ For Professionals and Patients: Short Bowel Guidebook for Adult Patients: To order book at no cost, go to: www.shortbowelsyndrome.com/sign-up For Patients: Short Bowel Syndrome: Where to find support, information, and community: https://ironwoodpharma.com/wp-content/uploads/2024/02/SBS_Patient-Factsheet_02-23-24-Final.pdf Oley Foundation: www.oley.org UVA Health: https://med.virginia.edu/ginutrition/patient-education/ This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US October 2024

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. Episode 3 features Dr. Jamie Bering, focusing on complication management of short bowel syndrome. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US October 2024

Lori Plung is an IBD Patient Advocate who was diagnosed with Crohn's Disease at a young age, and later Short Bowel Syndrome (SBS), a condition where a person's small intestine is damaged or partially missing. Lori joins us to share her patient journey, how her quality of life has improved since her diagnosis, and offers advice for those living with SBS and their loved ones. Lori also shares a message of hope for anyone who's diagnosed with a life altering condition. This episode is brought to you by Ironwood Pharmaceuticals.   

Short Bowel Syndrome (SBS), a condition where a person's small intestine is damaged or partially missing, can cause serious symptoms including a failure to absorb enough nutrients from food for their body to thrive. Dr. Christopher Schmoyer, a Gastroenterologist from the University of Pennsylvania, joins us to explain the causes of SBS, how it is diagnosed and what treatment options are available. We also discuss long-term management of SBS and the lifestyle modifications that can help improve an SBS patient's quality of life. This episode is brought to you by Ironwood Pharmaceuticals.

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. Episode 2 features Dr. Dawn Adams, focusing on Anatomical and Physiological Considerations in Short Bowel Syndrome, the issues and treatment options. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US September 2024

This ASPEN podcast series is based on the Nutrition in Clinical Practice Supplement titled ‘Unmet Needs in Short Bowel Syndrome' published in 2023. Episode 1 features Dr. John Dibaise, focusing on SBS definitions, classification, and causes. This podcast series aims to educate clinicians on the current state of evidence in the management of SBS, stimulate ideas and questions for future research, and provide information in patient-friendly language to better educate and improve the health of patients with SBS. This podcast is supported by Ironwood. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US August 2024

In this podcast, Guest Editor Dr David Evans interviews Dr. Savas Tsikis, lead author of the paper “Fat Malabsorption in Short Bowel Syndrome: A Review of Pathophysiology and Therapeutics” published in the April 2024 supplement of Nutrition in Clinical Practice. Dr Tsikis is a surgical resident at Beth Israel Deconess Medical Center and Harvard Medical School. He has been working in the laboratory of Dr. Mark Puder at Boston Children's Hospital where they investigate the impact of fat malabsorption on their patients with short bowel syndrome and are developing treatment strategies to address fat malabsorption and improve outcomes. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US April 2024

Continuing our conversation with warrior, Jenny Jones from S1E27. Jenny lives with two rare, chronic conditions called Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome and more recently was diagnosed with Post-Concussion Syndrome, Fibromyalgia, and Esophageal Dysmotility. Due to FAP, she underwent a total colectomy at age nine. Complications resulted in six additional surgeries and an eighth surgery to remove her gall bladder. Her genetics and additional factors led Jenny to decide not to have biological children. As fate would have it, she ended up becoming a very involved auntie to her twin nieces and stepmom to her bonus son. Listen to Part Two as Jenny discusses when and how she shares a health crisis with her bonus kid, how she addresses the challenges from her health limitations and being a stepmom and auntie, and more. To learn more about Jenny Jones, her blog, YouTube vlog, children's book, Life's a Polyp with Zeke and Katie or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com. 

Let's catch up with warrior, Jenny Jones from S1E27. Jenny lives with two rare, chronic conditions called Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome and more recently was diagnosed with Post-Concussion Syndrome, Fibromyalgia, and Esophageal Dysmotility. Due to FAP, she underwent a total colectomy at age nine. Complications resulted in six additional surgeries and an eighth surgery to remove her gall bladder. Her genetics and additional factors led Jenny to decide not to have biological children. As fate would have it, she ended up becoming a very involved auntie to her twin nieces and stepmom to her bonus son. Tune in to Part One as Jenny fills us in on her health journey, shares her decision on kids and how she manages her many conditions as a stepmom and auntie. To learn more about Jenny Jones, her blog, YouTube vlog, children's book, Life's a Polyp with Zeke and Katie or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com.

This week we talked to Lori Plung! Lori has been living with Crohn's disease for more than 40 years and she has been living as fully and as well as possible. She's now been diagnosed with short gut syndrome and so we talk to her about what that is, what it's like, and how she uses TPN to optimize her nutrition and hydration. We also talked to her about how she came to leading a support group in partnership with UPMC and the Crohn's & Colitis Foundation and how that changed during Covid. We spoke to her about providing peer-to-peer support and the importance of community. We had such a great conversation with Lori and talked about so, so much more. I know you'll find Lori to be the ray of sunshine that we did! Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)Links: Lori gets a shout-out in Tina's episode! Information on short gut/bowel syndrome- Mount Sinai HospitalShort Bowel Syndrome pamphlet- Crohn's & Colitis Foundation- USAInformation on Parenteral Nutrition (TPN)- Cleveland ClinicInformation on Lori's Support Group Let's get social!!Follow us on Instagram!Follow us on Facebook!Follow us on Twitter!

In this podcast, Editor-in-Chief Dr Jeanette Hasse interviews Dr Marion Winkler and Dr Kelly Tappenden, authors of the paper, “Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome” published in the June 2023 Nutrition in Clinical Practice Supplement on short bowel syndrome. Dr Winkler is a Professor of Surgery, at the Alpert Medical School of Brown University and a Surgical Nutrition Specialist at Rhode Island Hospital in Providence RI. Dr Tappenden is currently Professor and Head of the Department of Kinesiology and Nutrition at the University of Illinois at Chicago and as of July 1, will be the Dean of the College of Health at the University of Utah. Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US June 2023 SUPPLEMENT

In this episode of the Emoroid Digest Podcast we sit down with Dr. Kishore Iyer from Mount Sinai Medical Center and discuss Short Bowel Syndrome (SBS), Intestinal Failure and intestinal Transplant.  We focus on the recent Clinical Practice Update from the AGA on SBS. Enjoy and please see the link below to an exception Expanding Community Healthcare Outcome (ECHO) website that Dr. Iyer created to assist clinicians learn more about these small intestinal disorders and how to properly manage them via the use of regular case based webinars.  Host: Dr. Chuma Obineme (GI Fellow) –  https://twitter.com/TypicallySilent    Guest: Dr. Kishore Iyer  https://liftecho.org/web/content/kishore-iyer   Link to Review: Short Bowel Syndrome Article   Link to Emorid Digest Visual Summary: https://twitter.com/EmoryGastroHep/status/1630795591960674307?s=20   Link to Emoroid Digest Website: https://med.emory.edu/departments/medicine/divisions/digestive-diseases/education/emoroid-digest.html   Link to LIFT Echo informational site on short bowel syndrome, intestinal failure and intestinal transplantation - https://liftecho.org/web/   Other Resources: Knowledge of chronic intestinal failure among US gastroenterologists: Cause for concern and learning opportunity - https://pubmed.ncbi.nlm.nih.gov/34713914/

In part 2 of this podcast, Drs Brian Lacy and Kishore Iyer shed light on treatment options for patients with short bowel syndrome. Brian Lacy, MD, is a professor of medicine and gastroenterologist at the Mayo Clinic in Jacksonville, Florida. Kishore Iyer, MD, is a professor of surgery and pediatrics and director of the Intestinal Rehabilitation & Transplant program at Mount Sinai Hospital in New York City, New York.

How is short bowel syndrome different than chronic intestinal failure? How do we best diagnose short bowel syndrome? What are some of the potential complications to be aware of and how do we avoid them? Drs Brian Lacy and Kishore Iyer discuss all these important questions and more on part 1 of this 2-part podcast. Brian Lacy, MD, is a professor of medicine and gastroenterologist at the Mayo Clinic in Jacksonville, Florida. Kishore Iyer, MD, is a professor of surgery and pediatrics and director of the Intestinal Rehabilitation & Transplant program at Mount Sinai Hospital in New York City, New York.

Swapna Kakani is a nationally known speaker, and an award-winning advocate in rare and chronic disease healthcare delivery and the patient experience. Her life story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact her healthcare advocacy has across disciplines. Swapna was diagnosed with the rare disease Short Bowel Syndrome at birth and for her entire 33 years has lived with nutrition through an IV and/or a feeding tube. In 2014, she had a small intestine organ transplant. Swapna through her platform, Swapna Speaks, has spoken across the world to several healthcare companies and associations motivating their leaders to make a difference within themselves and in their organizations to create and sustain valuable patient-and family-centered care across the care journey. Her recent presentations include the Cleveland Clinic Patient Experience Summit, the Healthcare Information and Management Systems Society (HIMSS) Conference, the Association for Vascular Access, and a TEDx talk. Swapna also does healthcare advocacy and policy work for the Short Bowel Syndrome/Intestinal Failure and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population, which has passed state bills and started educational initiatives for families affected by rare disease in the state. In 2021, she co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome (SBS) community to investigate quality of life, and priorities, of patients with SBS and their families. The initiative published their first journal article in Journal of Pediatric Surgery in October 2021. Swapna, originally from Huntsville, AL, received her Bachelor's in Psychology and Master's in Public Health from the University of Alabama at Birmingham (UAB). You can find Swapna on Facebook, Instagram, or Twitter @SwapnaSpeaks or on Linkedin at www.linkedin.com/in/Swapna Kakani www.swapnakakani.com Alabama Rare – www.alabamarare.org the gutsy perspective – www.thegutsyperspective.org

Meet warrior, Jenny Jones. Jenny believes persistence is key to living with all the aspects of her two rare, chronic conditions called Familial Adenomatous Polyposis and Short Bowel Syndrome. Diagnosed with FAP as a child, she underwent a total colectomy at age nine. Complications led to six additional surgeries and an eighth surgery to remove her gall bladder. With encouragement from a community FAP page, Jenny started a blog in 2012 called Life's a Polyp and began openly sharing all aspects of living with her rare conditions. The blog lead her to start a YouTube vlog, write a children's book called Life's a Polyp with Zeke and Katie and become an important advocate for her disease. Tune in as Jenny explains how perseverance helped her find the best medical care, be proud of her scars and find her purpose in life. To learn more about Jenny or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com.

This special podcast is part of the Ostomy Observations Series, a brand-new 6-part series that is included in the "Educating Today for Exceptional Outcomes Tomorrow" Program and is commercially supported through an educational grant from Hollister Incorporated. On this month's episode we sit down with Christine Berke, MSN, APRN-NP, CWOCN-AP, AGPCNP-BC to speak about the topic, “In the Thick of It- Modifying Stool Consistency with Fecal Stomas”. Chris is a Nurse Practitioner at Nebraska Medicine in Omaha, Nebraska. She is a full-time provider in the Wound & Ostomy Clinic and has been instrumental in expanding the services there over the last 13 years. Chris served on the National WOCN® Society Board of Directors for 6 years; for 2 years as a Director and then 4 years as the Secretary. She previously completed a 5-year term on the Advanced Practice Exam Committee of the WOCNCB® and served as the Chair of that Committee for 2 years. During her tenure, she helped developed, write, and launch the 3 inaugural exams for Advanced Practices nurses in the field of Wound, Ostomy and Continence Nursing. She has been a nurse for 39 years, a WOC nurse for 21 years, and an Advanced Practice nurse for 14 years. She has published several WOC-related articles in peer-reviewed journals and has helped co-author two book chapters.Listen in to learn more about Chris' experience with stool consistency, principles to follow when managing patients, general categories of medications to help manage patients, and more.This podcast is part of the OstomyObservations Podcast Series, a brand-new 6-part series that is included in the "Educating Today for Exceptional Outcomes Tomorrow" Program. Both the podcast series and the Educating Today for Exceptional Outcomes Tomorrow Program are commercially supported through an educational grant from Hollister Incorporated. For additional information, please visit: wocn.org/exceptionaloutcomes. The WOCN® Society does not endorse or support products or services. Episode Resources:View the WOC Core Curriculum BooksView Diet and Nutrition information from the United Ostomy Associations of America (UOAA)This webpage contains a sign-up form for Short Bowel Syndrome-related resources with an option to receive a complimentary copy of The Adult Patient's Guide to Managing a Short Bowel, 5th Edition, by Carol Rees Parrish, MS, RDNShort Bowel Syndrome Practical Approach to Management: Practical Approach to Management by John K. DiBaise, Carol Rees Parrish, and Jon S. Thompson is available on AmazonPlease note the WOCN® Society does not endorse or support products or services.

Swapna Kakani2014 - BS, College of Arts and Sciences/Honors College2020 - MPH, School of Public HealthFounder & Executive Director, Alabama RareMore Information:Swapna Kakani - websiteAlabama Rare - website

What in incredible journey Jenny has lived thus far. I had never heard of FAP prior to our conversation so I was very intrigued to learn about it. My guest- Jenny lives with two rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome. She lived with an ostomy for 6 years before having it reversed. Due to her medical experiences, Jenny's dedicated her professional and personal time to the chronic illness community and raises awareness about her rare diseases through her blog Life's a Polyp. To celebrate Rare Disease Day, Jenny published her first children's book about FAP - Life's a Polyp with Zeke and Katie. She also raises funds for FAP research through Life's a Polyp Shop. Now through May 15th, 2022, you can make a purchase through her shop and the proceeds will benefit the much-needed research for FAP. Social media handle: @LifesaPolyp Facebook, Twitter, Instagram, Tiktok, Pinterest, Twitch, Youtube, Snapchat http://www.LifesaPolyp.com http://www.cafepress.com/LifesaPolyp https://imaginewellc.com/lifes-a-polyp **************************** Thank you for being here! I would be so truly grateful if you took a minute to RATE*SUBSCRIBE*and REVIEW* the show on your favorite listening platform. My goal is to share these incredible stories of healing and create a Community for those that struggle with a chronic illness or auto immune disease. But I need your help! When you subscribe, rate or review it helps the show get in front of a larger audience. XO AND now you can listen to each episode directly from my WEBSITE! I created a NEW page with each episode and all the details! ------>Check out the guest interviews on my YouTube channel! 123 Momsquad Website: 123Momsquad.com You are AMAZING!! Love to you all! XO Jennie Lynn : ) --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

What in incredible journey Jenny has lived thus far. I had never heard of FAP prior to our conversation so I was very intrigued to learn about it. My guest- Jenny lives with two rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome. She lived with an ostomy for 6 years before having it reversed. Due to her medical experiences, Jenny's dedicated her professional and personal time to the chronic illness community and raises awareness about her rare diseases through her blog Life's a Polyp. To celebrate Rare Disease Day, Jenny published her first children's book about FAP - Life's a Polyp with Zeke and Katie. She also raises funds for FAP research through Life's a Polyp Shop. Now through May 15th, 2022, you can make a purchase through her shop and the proceeds will benefit the much-needed research for FAP. Social media handle: @LifesaPolyp Facebook, Twitter, Instagram, Tiktok, Pinterest, Twitch, Youtube, Snapchat http://www.LifesaPolyp.com http://www.cafepress.com/LifesaPolyp https://imaginewellc.com/lifes-a-polyp **************************** Thank you for being here! I would be so truly grateful if you took a minute to RATE*SUBSCRIBE*and REVIEW* the show on your favorite listening platform. My goal is to share these incredible stories of healing and create a Community for those that struggle with a chronic illness or auto immune disease. But I need your help! When you subscribe, rate or review it helps the show get in front of a larger audience. XO AND now you can listen to each episode directly from my WEBSITE! I created a NEW page with each episode and all the details! ------>Check out the guest interviews on my YouTube channel! 123 Momsquad Website: 123Momsquad.com You are AMAZING!! Love to you all! XO Jennie Lynn : ) --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

Jia Yin Townley, PharmD, BCPS, describes the pathophysiology of short bowel syndrome, identifies the medications used to manage short bowel syndrome and recognizes ways to optimize medication regimens for short bowel syndrome patients. For more pharmacy content, follow Mayo Clinic Pharmacy Residency Programs @MayoPharmRes or the host, Garrett E. Schramm, Pharm.D., @garrett_schramm on Twitter! You can also connect with the Mayo Clinic's School of Continuous Professional Development online at https://ce.mayo.edu/ or on Twitter @MayoMedEd. 

Join Yvonne Brandenburg, RVT, VTS SAIM and Jordan Porter RVT, LVT, VTS SAIM as we talk about: Short Bowel Syndrome in Veterinary Patients. What happens when homeostasis is disrupted by removing a large amount of the intestine.     Resources We Mentioned in the Show  “Small Animal Internal Medicine For Veterinary Technicians and Nurses”, edited by Linda Merrill, LVT, VTS SAIM, CP https://imfpp.org/saimbook   Thanks so much for tuning in. Join us again next week for another episode!  Want to earn some RACE approved CE credits for listening to the podcast? You can earn between 0.5-1.0  hour of RACE approved CE credit for each podcast episode you listen to.    Join the Internal Medicine For Vet Techs Membership to earn and keep track of your continuing education hours as you get your learn on!   Join now! http://internalmedicineforvettechsmembership.com/   Get Access to the Membership Site for your RACE approved CE certificates Sign up at https://internalmedicineforvettechsmembership.com  Get Access to the Technician Treasure Trove  Sign up at https://imfpp.org/treasuretrove    Thanks for listening!  – Yvonne and Jordan 

Dr. Kelly Tappenden interviews Drs. Felix Harpain, Lukas Schlager, and Christopher Dawoud of the Department of General Surgery of the Medical University of Vienna, discussing the integrating SBS-IF patients treated with teduglutide in a proactive and tight-meshed patient care program significantly improves the clinical outcome, leading to an increased proportion of patients reaching enteral autonomy. The text included in the description of the podcast Business Corporate by Alex Menco | alexmenco.net Music promoted by www.free-stock-music.com Creative Commons Attribution 3.0 Unported License creativecommons.org/licenses/by/3.0/deed.en_US February 2022

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Go online to PeerView.com/SWN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in psychiatry discusses new and emerging therapies addressing unmet patient needs in the management of schizophrenia and bipolar disorder. Upon completion of this activity, participants should be better able to: Describe the barriers and challenges associated with the treatment of patients with schizophrenia and bipolar disorder, Assess the mechanisms of action, efficacy, safety, and tolerability profiles of available and emerging therapies for the management of schizophrenia and bipolar disorder, Incorporate shared decision-making between the interprofessional healthcare team and patients in the individualized management of schizophrenia and bipolar disorder to maximize treatment and mitigate adverse events and disease relapse.

Short Bowel Syndrome, is a debilitating, malabsorptive condition, most often caused by the resection of significant amounts of small bowels, be it from inflammatory bowel disease, malignancy, mesenteric ischemia and so on. Dr Ennaliza Salazar, Consultant Gastroenterologist, and Director of the Singapore General Hospital Nutrition Service, shares with us her approach to patients with Short Bowel Syndrome. We delve into the remarkable ability of the intestines to undergo intestinal adaptation, and talk about the treatment available and upcoming, for patients suffering from Short Bowel Syndrome. 

Listen as Dr. London Smith (.com) and his producer Cameron discuss Short Bowel Syndrome with special guests Ash Love'm and Mabel (Ezra Parter and Jany Stehman). Not so boring! https://www.patreon.com/join/jockdocpodcast Hosts: London Smith, Cameron Clark. Guests: Ezra Parter, Jany Stehman. Produced by: Dylan Walker Created by: London Smith

Listen to experts discuss the multidisciplinary and interprofessional approach to managing patients with short bowel syndrome. Credit available for this activity expires: 1/27/2023 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/967025?src=mkm_podcast_addon_967025

Learning Objectives: 1. Understand the varied presentations and clinical implications of short bowel syndrome 2. Reflect on the management of short bowel syndrome and its associated co-morbidities 3. Consider the nutritional impact for the patient who has an ileostomy Download Now

In this episode, I interview Jenny Jones, a fighter of Familial Adenomatous Polyposis and Short Bowel Syndrome. Jenny was diagnosed with the rare, hereditary colon cancer syndrome Familial Adenomatous Polyposis at age 8 and had her first surgery to remove her colon at age 9. After experiencing life-threatening complications, Jenny required 4 more surgeries that year and developed another rare disease - Short Bowel Syndrome as a result. She lived with an ileostomy for 6 years before having it reversed into a Straight Pull Thru and again experienced life-threatening complications. Jenny has been able to surpass all the odds though and went on to earn a Master's Degree and maintains full time employment in addition to her rare disease awareness and advocacy efforts through her blog, Life's a Polyp. Keep up with her advocacy journey! Blog: www.LifesaPolyp.com Youtube: www.Youtube.com/LifesaPolyp Merch Website: www.CafePress.com/LifesaPolyp Social Media Handle: LifesaPolyp --- Support this podcast: https://anchor.fm/theraredisorderpodcast/support

Dr. Mark Corkins explores Short Bowel syndrome, intestinal rehabilitation, and how to help children afflicted with Short Bowel.

Jenny was diagnosed as a child with the rare diseases Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. She lived with an ileostomy for 6 years before having it reversed into a straight pull thru. In her spare time, Jenny shares about life with rare disease on Life's a Polyp blog and Youtube channel. She raises funds for NORD FAP Research Fund through Life's a Polyp Shop and is writing a children's book about FAP. Jenny graduated with a Master's of Social Work and works with individuals with chronic illness. Short bowel syndrome is a group of problems related to poor absorption of nutrients. Short bowel syndrome typically occurs in people who have had at least half of their small intestine removed and sometimes all or part of their large intestine removed significant damage of the small intestine poor motility, or movement, inside the intestines Short bowel syndrome may be mild, moderate, or severe, depending on how well the small intestine is working. People with short bowel syndrome cannot absorb enough water, vitamins, minerals, protein, fat, calories, and other nutrients from food. What nutrients the small intestine has trouble absorbing depends on which section of the small intestine has been damaged or removed. (Credits NIH)

In this episode of Bowel Sounds, hosts Dr. Temara Hajjat and Dr. Peter Lu talk to Dr. Sam Kocoshis about caring for children with intestinal failure and intestinal rehabilitation. Dr. Kocoshis is a Professor of Pediatrics at Cincinnati Children's Hospital and Medical Center and the Medical Director of the Intestinal Care Center and the Small Bowel Transplantation Program. We talk to him about the management of children with short bowel syndrome, including recent advances in promotion of intestinal adaptation, prevention of central line-associated bloodstream infections (CLABSIs), detection and treatment of small intestinal bacterial overgrowth (SIBO), and prevention of intestinal failure-associated liver disease.  We also discuss the indications for small bowel transplantation and a brief history of this procedure.  Finally Dr. Kocoshis gives advice for trainees and junior faculty.As always, the discussion, views, and recommendations in this podcast are the sole responsibility of the hosts and guests and are subject to change over time with advances in the field.Produced by: Temara Hajjat, Peter LuSupport the show (https://www.naspghan.org/content/87/en/foundation/donate)

Hey peeps and welcome back to another episode of the Because We Are Strong podcast. Today we are sitting down with Jenny, a blogger and entrepreneur, who battles FAP and Short Bowel Syndrome. Jenny uses her platforms and shop to raise awareness and research funds.One thing that Jenny wants our community to know: They are not alone in their rare disease or chronic illness and to feel empowered to advocate for themselves.Connect with Jenny:www.LifesaPolyp.comwww.Youtube.com/LifesaPolypwww.CafePress.com/LifesaPolypSocial Media: LifesaPolyp_____________________________________________________________ That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. Support the show (https://www.patron.com/findyourrare)

In this episode, I interview Emily, who is a fighter of Short Bowel Syndrome and Intestinal Transplant. Emily Parks is a chronically ill young professional based out of the Washington D.C. area working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital. Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact of medical trauma and medical PTSD on patients and their treatment outcomes as well In preparation for a PhD in medical trauma, Emily founded the organization POP!, where she hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know about the mental health side of the patient experience. Keep up with her advocacy journey! Website: popmedicalptsd.org Instagram: https://www.instagram.com/pop_medicalptsd/ --- Support this podcast: https://anchor.fm/theraredisorderpodcast/support

Having a chronic illness as a young adult can be isolating. Healthy peers don’t understand and the medical world feels designed for older people. Then one day, you find people like you online. These online communities weren’t always there – a few brave pioneers paved the way for these safe spaces to take flight. In this episode, Stefanie Grant and Jenny McGibbon discuss how they started sharing their health journeys online in their early 20s. For both Stefanie, who has facial pain disorders and Fibromyalgia, and Jenny, who has Myalgic Encephalomyelitis (ME) and Short Bowel Syndrome, their blogs began as a personal outlet during a time they felt alone in their health battles. As their journeys evolved, so did their blogs, becoming online communities that now serve thousands. Together, they discuss their responsibilities as leaders within the space, the delicate balance that exists between positivity and authenticity, and how they attempt to hold space for others while recognizing everyone has a different lived experience.

Welcome back to the tasty morsels of critical care podcast. SBS is not a common thing to find in the ICU and the most likely context here is going to be receiving someone from the operating theatre who has had ... Read More »

Short Bowel Syndrome (SBS). After listening to this podcast, listeners will be able to: Define and recognize SBS in post-surgical patients Describe the pathophysiology of SBS List prognostic factors for SBS Describe the basis and indications for medical and surgical therapy for SBS.  

Host: Valeria C. Cohran, MD Guest: Kishore R. Iyer, MD, MBBS, FRCS, FACS Achieving the goal of enteral autonomy is one of the biggest challenges when managing patients with short bowel syndrome. Join Dr. Valeria Cohran and Dr. Kishore Iyer to learn how GLP-2 analogs can reduce the number of total parenteral nutrition (TPN) days in adults and children and even allow some patients to be successfully tapered from TPN.

CME credits: 0.25 Valid until: 28-09-2021 Claim your CME credit at https://reachmd.com/programs/cme/short-bowel-syndrome-strategies-reduce-dependency-parenteral-support-adults-and-children/11861/ Achieving the goal of enteral autonomy is one of the biggest challenges when managing patients with short bowel syndrome. Join Dr. Valeria Cohran and Dr. Kishore Iyer to learn how GLP-2 analogs can reduce the number of total parenteral nutrition (TPN) days in adults and children and even allow some patients to be successfully tapered from TPN.

CME credits: 0.25 Valid until: 28-09-2021 Claim your CME credit at https://reachmd.com/programs/cme/short-bowel-syndrome-strategies-reduce-dependency-parenteral-support-adults-and-children/11861/ Achieving the goal of enteral autonomy is one of the biggest challenges when managing patients with short bowel syndrome. Join Dr. Valeria Cohran and Dr. Kishore Iyer to learn how GLP-2 analogs can reduce the number of total parenteral nutrition (TPN) days in adults and children and even allow some patients to be successfully tapered from TPN.

Short Bowel Syndrome is a life-threatening rare disease caused by a significant shortening of the gastrointestinal tract. Because of difficulties people with short bowel syndrome have properly absorbing nutrients they rely on receiving them through intravenous infusions. This has an impact on the quality of life of people with the condition and comes with a high risk of systemic infections. 9 Meters Biopharma is focused on rare gastrointestinal conditions. It is advancing an experimental therapy for short bowel syndrome. We spoke to John Temperato, president and CEO of 9 Meters Biophama, about short bowel syndrome, the company’s experimental therapy to treat the condition, and how the company has built its pipeline through two recent mergers.

In this podcast, Editor-in-Chief Kelly A. Tappenden, PhD, RD, interviews Darlene G. Kelly, MD, PhD, FACP, FACG, about her article "Short Bowel Syndrome: Highlights of Patient Management, Quality of Life, and Survival" published in the May 2014 issue of JPEN. https://doi.org/10.1177/0148607113512678

In this episode we talk about our son's condition and how my parents kicked us out after having a baby!

Dr Rahim Naimi discusses the results of a phase 2 trial of glepaglutide to treat short bowel syndrome.

Dr Rahim Naimi discusses the results of a phase 2 trial of glepaglutide to treat short bowel syndrome.

After a long fertility journey and a high risk, stressful, and very sick pregnancy, Stephanie gave birth at 26 weeks due to severe preeclampsia.  Stephanie, mom to Adeline, shares her experiences in the NICU and describes Addie’s difficulty with digestion. A long road of unknowns eventually led to a diagnosis of functional short bowel syndrome.  Stephanie shares her perspective about important topics like how having a child with an "invisible disease" can be a blessing and a curse, how she actually felt relief when they received Addie’s diagnosis, and how she handles tough to answer questions from well-meaning friends and families.  Stephanie talks about how she has been an advocate for her daughter and fought for a diagnosis, and how she continues to fight to give her daughter the best care possible and her family travels every 4 to six weeks to Boston from Baltimore to get Addie around and in front of experts in the field. Listen to Stephanie's story on the Child Life On Call Podcast. Follow Stephanie and Addie: @addie.belle + She Got Guts Child Life On Call | Instagram | Facebook | Twitter | Email

We have Roy George on the episode with us today! Roy is an incredible and hilarious human who’s dealt with chronic illness since he was a baby. We chat with Roy about his experiences with an ostomy bag, how he manages working full time while dealing with chronic illness, and his podcast. We also chat with him about the difference between being born with your chronic illness and getting sick later in life. When you get sick later in life, you have to adjust to a new way of living with your health conditions. Roy never had to make adjustments since this is all he’s ever known. It’s interesting to hear his perspective and we’d love to hear your thoughts on this topic over on our social media! Get in touch with Roy:Twitter:@roysamuelgeorge@ttbwithroy@spoons4dayz Facebook:Roy S. George Triple Threats & Beyond Instagram:@roysamuelgeorge @triplethreatsandbeyond@sbs_spoonie123 Website:www.roygeorge.net Get in touch by emailing us at beyondyourdiagnosis@gmail.comor messaging us on Instagram @beyondyourdiagnosis. Send us any questions, comments, or episode topics you’d like us to address. You can find Victoria on Instagram @lemonsnlyme and Derek at @chronicloveclub*Disclaimer: this podcast is not meant to replace medical advice. We are simply sharing our experiences and advice. Also, adult language may be used.

"Rare is not rare" - Swapna Kakani Swapna Kakani (@swapnaspeaks) is a professional keynote speaker and advocate in the area of healthcare delivery and the patient experience. Her inspirational life story, of being born with Short Bowel Syndrome, requiring IV nutrition through a central venous catheter for 29 years and counting, nutrition through a feeding tube for 20 years, and enduring 65 surgeries including a small intestine transplant. Her story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact of her healthcare advocacy across disciplines. Swapna through her platform, Swapna Speaks, has given several presentations across the U.S. through medical conferences, hospitals, medical schools/residencies, graduation ceremonies, and corporate events, including giving a TEDx talk, performing live for The Moth, and speaking for Fortune 500 companies and Pharmaceutical companies. Swapna, in addition does healthcare advocacy work both at the federal and state level for the Short Bowel Syndrome/Intestinal Failure and broader rare disease community. She has been part of various projects to improve care and maintenance of central venous access devices (CVAD) and part of regulation changes to improve the patient experience of IV nutrition consumers.  In 2017, Swapna worked in Washington D.C. for the National Organization for Rare Disorders (NORD) researching federal and state health policies and advocating on Capitol Hill to ultimately expand care for individuals with rare diseases. Also, in 2017, back in Alabama, Swapna noticing a disconnect in her home state in regard to rare disease care, and created Alabama Rare. It is a grassroots coalition to unite the state around the rare disease population. It acts to bring support for individuals & families, educate the broader community, bring awareness to the population’s needs, and advocate for necessary change.    Swapna, originally from Huntsville, AL, received her bachelors in Psychology from the University of Alabama at Birmingham (UAB) in 2013 and is currently back at UAB working on her Masters in Public Health.  * * * Show Notes:  Ted Talk: How I Found My Purpose In My Disease  Book Suggestions: Checklist Manifesto by Atul Gawande Others Suggestions: Toastmasters 

Short gut syndrome, also known as short bowel syndrome, occurs when the body does not properly absorb and digest food normally because a large length of the small intestine is missing or non-functional. This can be due to a birth defect or surgical removal.People with short gut syndrome cannot absorb enough water, vitamins, and other nutrients from food to thrive and grow.Here to discuss Short Bowel Syndrome and when to refer, is Brad Warner, MD. He is a Washington University pediatric general surgeon and surgeon-in-chief at St. Louis Children's Hospital.

In this podcast, Editor-in-Chief Kelly A. Tappenden, PhD, RD, interviews Kishore R. Iyer, MBBS, FRCS, FACS, on the article, "Independence From Parenteral Nutrition and Intravenous Fluid Support During Treatment With Teduglutide Among Patients With Intestinal Failure Associated With Short Bowel Syndrome" published in the August 2017 issue of JPEN.

Dr. Corrine Hanson. Photo courtesy of Dr. Corrine Hanson. Episode 11 features Dr. Corrine Hanson, Associate Professor in the Division of Medical Nutrition Education, College of Allied Health Professions, University of Nebraska Medical Center (Omaha, NE). Dr. Hanson provides a comprehensive overview of standardized feeding protocols as they apply primarily to very low birth weight babies, those weighing less than 1500 grams (3 pounds 4.91 ounces) and who have the greatest risk for developing the NEC. She discusses: * The unique nutritional needs of very low birth weight babies * The importance, and inherent challenges, of initiating the feeding of premature babies * What constitutes standardized feeding protocols * How standardized feeding protocols appear to decrease rates of NEC and improve outcomes * Nutritional support related to a secondary diagnosis of Short Bowel Syndrome. Copyright © 2016 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

The number of bacteria living on and in the body of the average healthy adult human are estimated to outnumber human cells by a ratio of anywhere from 3:1 to 100:1. Commensal bacteria provide numerous benefits to their host including production of vitamins and antimicrobial substances that are essential in maintaining the delicate balance between helpful colonies and pathogenic overgrowth. There is a school of thought that posits lactate-producing bacterial species will cause ill-health rather than promote health, particularly for patients suffering Chronic Fatigue Syndrome and Short Bowel Syndrome. Today Belinda Reynolds explores the pathogenesis of D-Lactate and reveals it may not be the culprit first thought, but rather a victim of circumstance.

Laura Martin. Photo courtesy of Laura Martin. Episode 6 features Laura Martin, expert parent, mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation—a non-profit organization that supports parents of premature infants. During the episode, Laura shares her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. She discusses: The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks—four months early, and Campbell’s passing at 23 days of life, How Joseph developed late-onset NEC and lost two-thirds of his small intestine, Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies—all resulting from NEC, How hers and her family’s experience with prematurity led to her work at Graham’s Foundation, Her personal blog where she documents her daily life as an expert parent of a child with special needs. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 6 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. NEC is the leading cause of Short Bowel Syndrome or Short Gut Syndrome. The amount and location of intestine lost can result in life-long medical complications. Up to now, we’ve discussed NEC and its most common complication from the perspective of the neonatologist or surgeon. However, I feel that it is equally important to share the parent’s perspective. I’m privileged to have one such expert parent as my guest today. Laura Martin is the mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation. She is also the parent of a fellow surgical NEC survivor. Laura will share with me today her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. During our conversation, she will discuss in varying degrees: The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks—four months early, and Campbell’s passing at 23 days of life, How Joseph developed late-onset NEC and lost two-thirds of his small intestine, Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies—all resulting from NEC, How hers and her family’s experience with prematurity led to her work at Graham’s Foundation, Her personal blog where she documents her daily life as the parent of a child with special needs. With that in mind, let me introduce my guest today. This is Laura. Hi, how are you? LAURA MARTIN, GUEST: Hey, good. How are you? STEPHANIE: Good. Thank you for joining us. And Laura is a blogger at Joseph at Home and the Director of Parent Communication and Engagement at Graham’s Foundation. So I will let you introduce yourself and talk to me a little bit about your experience with prematurity and Necrotizing Enterocolitis. LAURA: Yeah. Our twin boys were born at 24 weeks gestation on Halloween morning in 2009. It came as a big surprise. It had been a perfectly clean, normal pregnancy. I had just had an appointment three days before, woke up with a dull backache about midnight. And Joseph was born first at 7:41 and his twin brother Campbell at 7:42. No rhyme or reason for the prematurity. It just happened. Campbell, unfortunately lost his battle to prematurity after 23 days of life. He just had a lot of complications from prematurity that he just couldn’t have overcome. Joseph went on to spend 228 days in the neonatal intensive care unit before he came home. He is now five and a half. He just started kindergarten. But it’s been a long journey to get here. We were two days from coming home when he was 5 and a half months old. He was about eight weeks adjusted. We had everything set up at home. We had oxygen. We had G-tube equipment. We had everything. We were ready. His room was ready. All of the clothes were washed. Two days before discharge, we got a call from the NICU that he was gray and bloated. And they were putting him on a ventilator. Let me back up a little bit. A few days prior to that, he had been showing some signs of infection. But nobody really knew what it was. He just had vaccines. He was running a little bit of fever. We contributed it to that. This pushed discharge back a little bit. But just two days before the initial discharge, when they called and said he’s gray and bloated, and they were putting him on a ventilator. You need to get here immediately. Our world kind of turned upside down, because we thought we were two days from home. And here we were not knowing what was going to happen. This was a Saturday, the day before Palm Sunday, 2010. And we didn’t know what was going to happen. The doctors kind of watched him throughout the Saturday, were taking X-rays every few hours. A little bit after lunch that day, one nurse practitioner came and said, his X-ray looks a little bit like NEC. Do you know what that is? And we said, of course, we know what that is. We’ve been in the NICU five and a half months. But he’s eight weeks adjusted. Why would be looking at NEC? We’ve been told once you get to your due date, you cross that off your list of things to worry about. And so, as the day went on, the night went on, it became very evident that he had Necrotizing Enterocolitis. They had seen this one other time in the NICU with a baby this old. He went through Saturday night. Things were not looking good. And on Sunday morning, the surgeon came to us and said, I’m going to take him to the OR. I’m going to open him up. And I’m going to see what happens. We don’t know what we’re going to find. So, on Palm Sunday, 2010, the surgeon took him to the OR. He was gone for several hours and came back halfway through surgery and sat us down in a room and said, here’s what I found. He has 41 centimeters (16 inches) of salvageable intestine. He said, he has 28 centimeters (11 inches) below his stomach, and he has 13 (5 inches) above his colon. Everything else in the middle is completely gangrenous. He said, we can take out the gangrenous intestine. And he’ll have two stomas for a while. Then we’ll go back in and reconnect. But he also looked at us and said, we don’t know what life for him is going to be like. It’s probably going to be very rocky. He may die before the age of two waiting on a liver transplant, because he’s going to be TPN dependent. If you want to close him up and let him go, I’ll respect your wishes. And, of course, we looked at him and said, no way, we’ve gotten this far. We’ve already lost one kid. We’re not doing this again. Go in there. Do what you have to do and save his life. So he went back. He was gone for several hours, came back to us. We saw Joseph, and it was amazing. Even though he had stomas, and he had just lost two thirds of his small intestine, he looked so much better than he had right before he went, because the infection was gone. A few days after that, they went in and placed a central line, because he was, of course, totally TPN dependent. He already had a G-tube before NEC, because of aspiration to his lungs. So we were fortunate with that that he already had the G-tube. But, as the weeks wore on, they were able to slowly decrease TPN, increase feeds, and decided after four weeks, he was ready for intestine reconnect, which was shocking. Nobody expected after four weeks he would be ready for intestine reconnect. So four weeks later, they went in, reconnected the intestines, told us we would probably be in another two to three months. He again amazed everybody—came off TPN very quickly, increased G-tube feeds to the point that they pulled his port before he came home. He never came home with a central line. And four weeks after his reconnect surgery, he came home—after 220 days in the NICU. STEPHANIE: That’s amazing. LAURA: So that’s how NEC came to be. Again, the hospital had seen one case of that. And it had been years and years and years. And people say, are you sure it’s NEC? Are you sure it was NEC? Yes, pathology confirmed that it was NEC. But who knows? Who knows why he had it at five and a half months old. STEPHANIE: Right, right. So just to back up, I’m curious what you knew about NEC before his surgery. You know, you had said that you had been in the NICU for now almost five months. And he reached his due date, so you were crossing it off the list. So I’m just curious, in general terms, what you knew up to that point. LAURA: NEC was one of those things that I remember learning about really early on in our NICU stay. Having 24-week twins, we knew that it was a very rocky journey. They both had less than 50% chance of survival. But my husband and I were the type that we wanted to know everything. We wanted to know what are things we have to look out for. What are things we need to be worried about? What are things that we don’t have to worry about? And it was within the first 24 to 48 hours that the nurse said there’s a thing called Necrotizing Enterocolitis. It doesn’t happen a lot. But it’s one of these things we watch for. We stay on top of it. So we knew about it from the beginning, but we had always been told that once you reach the gestational due date, you didn’t have to worry about it anymore. And while that is so true 99.999% of the time, there is a very small chance that it can happen later. And it’s almost one of those things I wish we had never been told—oh, yeah, you don’t have to worry about it when you hit 40 weeks. Because we did—we had completely crossed it off Right. So we know about it. And we knew what the warning signs were. We knew what to look for. Yet, again, when we look back on it, he had some of these warning signs two to three days before he got really, really sick. But why would—none of us thought it could be NEC. We thought, well, he’s had some GI issues. He has the feeding tube. He’s had his vaccines. It could be any other bug he’s picked up. He’s still in the NICU. But we knew what it was, but it was still just a huge shock that—I mean, he was 13 pounds at that point. He was a big kid, you know, for being in the NICU. STEPHANIE: Right, right. So he came home now, you said, four weeks after he had been reconnected. So talk to me a little bit about, I guess, those first days and first months when he was coming home—you know, again, sort of thinking from the perspective of things that we want to let parents and caregivers know, questions to ask, sort of things to look out for—so anything that you want to talk about, you know, his transition home and getting settled. LAURA: Yeah, he came home on complete continuous feeds via G-tube. So he was on feeds 24 hours a day because, of course, having NEC left him with short bowel syndrome. So he had a lot of dumping episodes, where it was out of control at times. We couldn’t really go anywhere because of the dumping syndrome. As the days went on, the weeks went on, the months went on, that got a little bit better. We were in and out of GI every 8 to 12 weeks, just checking in, making sure he was gaining weight. But a lot of doctors also didn’t really know what to do because he wasn’t TPN dependent. A lot of kids who come home with short bowel syndrome are TPN dependent. But here you have this kid who has only a third of his small intestine, but for the most part he’s tolerating formula well. He’s tolerating G-tube feeds. He’s gaining weight. He’s not going to need a port. Everybody was convinced he would have to have his port put back in. He never did. So that was actually, to be honest, a frustration for the first several years, is finding doctors who understood that, yeah, he is doing well. But he’s also not doing well. He only has a third of his small intestine. His weight gain is very slow. He still has periods of severe pain even today, from school. He still has periods where his belly is very distended. It took some time to find doctors who really wanted to help and say, yes, there really is still a problem here—with a kid who only has a third of his small intestine. That first year that he was home, he was rehospitalized five or six times, most of those with a GI bug. If he got any sort of stomach bug, we were in the hospital, because his body just couldn’t handle it. And so we were back in. Usually it would lead to a respiratory infection. He would spend a good week, 10 days, in the hospital. That was the first year. After that, I quit my job teaching, because we knew he had to stay home. He had to be healthy. And he had to grow. And as he’s gotten bigger, he’s gotten healthier. He has not been in the hospital for a GI bug in 3 and 1/2, 4 years. It’s been awhile. STEPHANIE: Oh, that’s great. LAURA: Yeah, now his body can tolerate it. You know, it’s not pleasant still. But we know what to do. But, as he’s gotten bigger, it’s gotten better. So, yeah, that was the first few years out of the hospital. STEPHANIE: We don’t have nearly the after-effects, but I remember Morgan’s transition home was pretty chaotic. LAURA: Yeah. STEPHANIE: His brother came home after 85 days, and I’m guessing was a much simpler transition, even just holding him in hands-on care and changing diapers. Morgan was very traumatized, I think, from being in the hospital and having the surgery. And we saw a big, big difference between him and his brother. So it was very scary as a parent that even simple things that you have to do was traumatizing to him. LAURA: Right. And then they can’t communicate with you to tell you that. And that’s what was so hard to watch early on, was you knew he was hurting. You knew he was in pain. But I didn’t know what to do to help, you know. So that was hard. Yeah. STEPHANIE: So, I guess, now that he’s getting a little bit older—you said he started kindergarten. That’s great. So how is he doing, I guess, developmentally? And are you seeing anything—you know, secondary diagnoses, I guess, maybe, strictly because of NEC or because of the short bowel or other issues that he’s having? LAURA: Yeah, he has several things that are going on. He did just start kindergarten. He’s in a special needs kindergarten. As a result—well, when he had NEC, he had to receive Gentamicin, which of course is an ototoxic drug. And the surgeon said, if we give this to him, he will probably lose all of his hearing. But if we don’t give this to him, he’s not going to live. Well, of course, it was a no-brainer decision. Before that, he had not passed his newborn hearing screening. But a lot of preemies don’t. So we kind of thought, well, we’ll get out of the NICU, he’ll pass it. He never did. While he was still in the NICU—this was in between NEC and the reconnect surgery—he was diagnosed with Auditory Neuropathy Spectrum Disorder, which is a hearing loss that comes and goes. It’s almost like you’re trying to tune a radio and there’s static. And that was what his hearing was like. So he received his first cochlear implant when he was three—three months after he turned three—because his hearing was rapidly deteriorating in his left ear. Just, not even two weeks ago, he received his second cochlear implant in his right ear. And we always go back to say, his hearing probably would have never been that great. But it’s definitely a lot worse post-NEC, because he had to receive the Gentamicin, the ototoxic drug, in order to kill the bacteria. Some other things that he has—July of 2014, he was diagnosed with Eosinophilic Esophagitis, which has been in question for several years. And we could not get the GI doctor to agree to do an endoscopy. He hated to do the endoscopy, because it meant putting him under sedation. Due to asthma, he didn’t want to do that. But at the same time, we’re battling with this increased amount of food allergies, knowing that that has to be a problem. Finally, they agreed to do the endoscopy. And it was clear that he had Eosinophilic Esophagitis. As a result of that, he has 15 food allergies. I’m happy to list them all if you want. But it includes all of the top 8 plus beef, chicken, rice, potatoes, watermelon, strawberry, pineapple, and a whole slew of medications. And I always tell people asking—it’s hard to know whether he would have had that regardless. Probably not. But having the Short Bowel Syndrome made it worse. He would not have had Short Bowel Syndrome if he didn’t have Necrotizing Enterocolitis. So to me it’s all sort of related. STEPHANIE: Right. Right. There’s definitely a domino effect. LAURA: It’s a domino effect. One thing has led to the other, which has led to the other. So it’s hard to know, some days, if you’re battling GI issues because of Short Bowel Syndrome. Or are you battling GI issues because of the Eosinophilic Esophagitis? Or are the white blood cells growing because he’s eating something he’s allergic to? Is there a new allergy? So some days we really struggle knowing what is what. And then you’ll have periods where he does great. And he’s like a normal kid. He does still have a G-tube. We were told he would lose the G-tube by two. But here we are almost six, and we still have the G-tube. Many days I wish we didn’t. But there are many days we couldn’t do without it. And if he doesn’t feel like eating or he’s in pain, we have the G-tube. And it’s literally been a lifesaver. And if he’s been sick, we can always get fluids in him. I would love to see it go. But I don’t see it going any time in the future. He doesn’t know life without it. He’s had it since he was four months old. To him it’s second nature. He gets his G-tube feeds at school. He gets them at home. They travel with us. But it’s truly a lifesaver for him. But it helps him gain weight. It’s what helps him actually be on the growth chart as a short-bowel kid. Many short-bowel kids, I think, are failure-to-thrive. He has never even been remotely considered failure-to-thrive, which is huge. So, yeah, there’s a lot of complications as a result—what I feel like, had he not had NEC, wouldn’t have led to X, Y, and Z probably. He does have development delays. But a lot of it is that he spent so much time in the hospital. Then there was the hearing issue, but he could not get a cochlear implant because he wasn’t healthy enough to have surgery. So it was just sort of this domino effect, and a spiral of getting out of it, and getting him healthy enough to be able to have surgery. And then you’re trying to catch up. You’re trying to catch up with language, fine motor, gross motor, it all, as well. But the kid we were told would never walk or talk, walked into kindergarten last week. So there’s so many things to be thankful for, and so many things that he’s doing so well on, that those are the days you really have to hold onto on the days he’s feeling really, really bad. You have to know that he’s going to get through it. Life will turn around, and it will get better. It’s just going to be interesting to see as he continues to grow, how much of this is just going to continue to get better. Will there be a decline at some point? We don’t know. Nobody really thought he would even make it to this point. STEPHANIE: Now, I’m just curious, sort of, personally, but also as a fellow parent of a NEC baby, have you talked to him at all about being in the NICU? Has any of that come up yet? I mean, I know he’s still sort of young. But I’m just curious. LAURA: Yeah, he knows he was in the hospital. When we drive by the hospital where he was born, he’ll say, that’s where I was born. That’s where my sister was born. He has seen pictures. He’s seen videos. But I don’t think he quite cognitively wraps his head around it. When he had a cochlear implant put in 10 days ago, it was at the hospital where he had NEC. And so we were able to kind of say, you were in the hospital here when we are a baby. A couple of the nurses stopped by to see him—they took care of you when you were a baby. But the cognition is just not quite there too. He sees his pictures. And he’ll say, I was very sick. And, yes, you were very sick—because he knows that his baby pictures look very different from his sister who was born full term. So he knows. He knows he has a G-tube. She does not. And so he’s starting to really realize those differences. STEPHANIE: Right. Yeah, I don’t think we’ve quite reached that yet. Shaymus deals with asthma. So he gets his puffs and he has, you know, different things. But I don’t think they’ve really lined up and taken notes on, you know, your picture has this. And my picture has that. Or you have this and I have that. But, yeah, sort of, it’ll be interesting to talk to them about it when they start to ask. Like, they just figured out that they’re twins this year. LAURA: Oh, that’s so funny. And my husband and I have talked about it. Gee, at what point in their life are they going to realize everything that they went through as a baby. And all these odds that were stacked against them. And all the times that they shouldn’t have lived. And will they be teenagers? Will they be adults? Will it be when they have their own children? My husband and I talk about this a lot. It’s just going to be interesting to see at what point do they kind of go, oh, wow, yeah, that really was what mom and dad went through and what I went through. It’s just fascinating. STEPHANIE: Yeah. So I would also like to let you talk about the work that you’ve done now because of having preemies and Joseph’s diagnosis. So you are the Director of Parent Communication and Engagement at Graham’s Foundation. So I’m happy to let you plug them away, and also to talk about your blog, which is Joseph at Home. LAURA: Yeah, I'll start with Graham’s Foundation first. I started working for them, gosh, about three and a half years ago in a different capacity. And it was one of those things that I was staying home with Joseph. And I was trying to figure out a way that I could give back to the preemie community. But I knew I couldn’t go into the NICU, because here I was with this child who got sick easily. And I knew that that couldn’t happen. So I started working for Graham’s Foundation, which was such a great outlet to be able to connect with other preemie parents, and sort of share stories—share stories with families who lost their child, with families who went through a long-term NICU stay, families who went through a short-term NICU stay. People will say, well I was only in the NICU 10 days. You were in seven and a half months. One day is one day too long for anybody to be in the NICU. And that’s what I always say to people. Nobody should have to go there. And if I can provide any sort of “it’s going to be OK,” I would love to do that. And so now, I serve as the Director of Parent Communication and Engagement. I do a lot of the writing for the blog for Graham’s Foundation, which is something we’re really trying to get off the ground. And through that, I also serve as a NEC mentor. So if parents come across our website and are looking to talk with someone who has experienced NEC, in no way am I a medical professional but I'm able to say: This is what we experienced. This is what we’re experiencing now. These are some questions you might be able to ask the doctor. And it’s been really nice to connect with people. Also, being five years out, to say, I promise you are going to get through this. When you’re dealing with, all along, doctor’s appointments, and you feel like you’ve got 18,000 things going on in one week. I’m here to tell you that I promise you, it gets better. The appointments get less and less and less. And it’s been so nice to connect with parents, and to offer that support from home, while I can still stay home with my kids and be able to work from home. And then also I have my personal blog, josephathome.com, which I started when I found I was pregnant with twins. I didn’t even share the blog address with anybody. My husband and I thought, oh, this will be great. We’ll update it. We’ll send it to friends and family. So as the pregnancy rocked along, I would sort of update it. I could never send out to anybody. And then when they were born Halloween morning, 2009, at 24 weeks gestation, I knew I didn’t have the energy to tell the same story over and over and over about what was happening. The texts were too long to send the information of what was going on. We had two of them, and I just couldn’t do it. And I was, like, oh, I’ve got this blog. This will be a great way to update people, so the long days of sitting in a hospital, my husband worked on our family tree. And I worked on the blog. That is just what we each sort of did to take our mind off of what was going on. And it was a great way, if somebody asked me a question, I would just say, read the blog. It’s on the blog. Just read the blog. I could share pictures—it just—because I wasn’t really in the mood to talk. We would talk to family, immediate family, and share with them what was going on. But it was just—it was so draining to tell the same story over and over and over. And if I just wanted to get something out there quickly, I would put it up. So, when Joseph came home, and I thought, well, I’ll keep it going. We’ll see what happens. It’ll probably die by the wayside. Well, five and a half years later—it’s almost six years later—it’s still going. And I write a lot now just about, of course, about prematurity, but also raising a special needs child and what that looks like, because we’re in this short-bowel world. We’re in the eosinophilic world. We’re in this hearing-loss world. We’re in the cochlear-implant world. We’re in the vision-impaired world. We’re in the mild cerebral palsy world, food-allergy world. And it’s just been nice to be able to connect with other parents and just to write about our real life and what it’s like. What it’s like. How do we deal with insurance? How do we deal with medical supplies? How do we travel? How do we do this, that, and the other? And it’s just a great outlet, too, just for venting, you know. And if I don’t want to talk about it, I can write about it. So we’ll see where it goes. It’s been a really nice outlet. But it’s also a great way to show Joseph, hey, this is where you started. This is where you are now. And it’s almost like a scrapbook, really, of his entire life, because it started the day he was born, and has everything. I just hit my—over 1,100 entries on it. STEPHANIE: That’s great. I commend you on that. I attempted, when I first came home from the hospital, to start recording things. And, I think, honestly, it was just too hard. I sort of thought to myself, I don’t want to remember this piece of it, so I sort of stopped. And I had scraps of paper where I would write down stats every day. You know, they gained this, and literally had, like, a pile two inches thick, by the time they came home, of daily weights and charts and things. Yeah, I mean, I’ve seen many of your posts. And I think they’re great. And I think it’s a great outlet. And, again, sort of that you’re not alone. And, you know, people are better off than you. People are worse off than you. And everybody’s sort of on their own journey. And I know preemie parents tend to minimize amongst other people, but your struggle is really your struggle and your family’s struggle. And no one should have to struggle. LAURA: No. And that’s what I’ve always said to people is, somebody out there always has something worse going on. Like, on Joseph’s worst day, somebody else has something worse going on. And that’s what I always say to people is, yeah, this is just our life in a little nutshell. But we’re so thankful for what we have. And, again, it could always be worse. You can just turn on the news every day and see that. But if it’s just, you know, if it can help one parent to say—and even sometimes I think people don’t like to say, well, this is not fair. You know what, sometimes it’s not fair. And it’s OK to say that and have a little pity party and then move on. And I enjoy being able to say to people sometimes. STEPHANIE: That’s great. So, I guess, is there anything else that you would want to mention if you had somebody in your position, however many years back, thinking to ask the doctors about, or transitioning home—coming home—how you sought out your specialists, if you’re not getting the answers that you think you should, how you proceeded, any sort of big-sisterly advice. LAURA: Yeah, I know, really. I think the big thing is to trust your instincts if you know that there’s something not right. We’ve gone through our fair share of doctors. Because if I feel like my child’s not getting the care that they need—and any parent would feel this way—I’m not going to settle for mediocre. I’m not going to settle for “he’s going to be fine” when you know in your heart that there’s still a problem. We were having some issues last year around the whole eosinophilic diagnosis. And I felt like we had run out of options where we live. And so I reached out to a doctor eight hours away. And he said, if you’re willing to travel, I’m willing to see him. I said, of course, we’re willing to travel. And so we did. He got us in. And we made the trip. And it was so nice to just connect with somebody who was a specialist in that field of Short Bowel Syndrome, to be able to say, yeah, he’s doing OK. I see that there are some problems. But you’re doing the right thing. And I think that’s become sort of my mantra is, don’t stop until you have the answers that you need. And there may not be answers. But I am not going to rest until I know that we have the answers we need. Like, we’re having some eosinophilic issues, so we’re working on getting into a top eosinophilic clinic. I don’t care how far we have to travel, because that’s what Joseph needs and it’s what’s best for him. And that’s what matters. It matters him feeling good. It matters him being healthy. It matters him growing. And he deserves to have the best life absolutely possible. And that’s what I would tell somebody if you’re just coming home. If you feel like something is not right, keep going and keep going and keep going. Yes, it’s exhausting. I think there are many days I’m asleep before my head even hits the pillow. But you have to do what’s best for your kid, because they can’t do it for themselves. You are their advocate. And that’s one thing that the NICU nurses taught us really, really early on—is you have to advocate for your child. Nobody else is going to do it for you. They can’t do it for themselves. You just have to keep going. And, again, it’s hard. You may hit brick walls here and there. Because goodness knows we’ve had our fair share with doctors. And it’s OK with doctors to speak your mind and say, you know, I don’t think you’re right on this. I think there’s more to it. You may upset them a little bit, because there’s no doubt I’ve upset a few. But it’s OK. It’s OK. Yes, they’re doctors. But they don’t have all the answers. You’re the parent. You live with your child day in and day out. You know their idiosyncrasies. You know what’s right and what’s wrong with them. And I think standing up for yourself is so important. And that’s what I would tell somebody coming out. You can’t be shy when it comes to advocating for your child who has special needs. STEPHANIE: I would agree. Yeah, we’re transitioning through preschool. And the boys were kindergarten eligible this year. But they’re actually being given an extra year of pre-K. And we had sort of that, uh, I’m not sure about this. I’m really not sure about it. I’m really not sure about it. And in the end they saw that—their teachers agreed with us. And the educational system agreed that, yeah, they’re a little bit immature. And probably going to kindergarten isn’t the best idea for them. And they really need the extra year. You know, they’re smart. Yes. But good enough isn’t good enough. We don’t want them to sort of eke by. We want to give them the best opportunities that they can have. So I agree with you wholeheartedly. LAURA: And it’s tough as a parent. I’ve had this conversation with a lot of people. My husband’s a teacher. I’m a teacher also. I’m not teaching right now. Hopefully one day I will be again. But it’s hard as a parent. It’s hard as a parent-teacher to have a child who has special needs and who needs that IEP (Individualized Education Program). It’s tough to sit on that end of the table as a parent. I mean, I’ve sat on the other end of the table as a teacher countless times. But, as a parent, it’s a tough pill to swallow, to say—and we know—I mean, Joseph started kindergarten. But we know full well he may need to repeat kindergarten. And while that’s tough to say, it’s a reality. We hope that he does great. But he may need to repeat. And if that’s what’s best for him, then that’s going to be what’s best for him. It’s tough to sit in an IEP meeting and hear how far behind he is. Or these are all the goals. And up to 21 pages now of his IEP. But it’s what he needs. And it’s what’s best for him. But I always go back to the day when one of our favorite NICU nurses—this was a long time ago—said, you know, one day he’s going to pull out a picture of him with all those tubes and wires and on a ventilator and say, see, mom, you remember this. And I have to think back to that, because, yes, it’s hard. And I kind of want to wallow in self-pity about, oh, I wish he was just in a regular ed class. He shouldn’t even be here. And that’s what I have to remind myself is, we had many days where we weren’t even sure we would see pre-K. And I know you’re the same way. We weren’t even sure he would see kindergarten. But here we are. And let’s just make the most of it. He’s loving every second of it. And that’s what matters. And so, being a preemie parent, as you know, it’s a journey that I never expected. But at the same time, I’m grateful for it, because it’s opened my eyes to a whole new area of life. STEPHANIE: Right. Well, I really appreciate you talking to me. And I think you’ve given some great advice—preemie parents or not, and NECs parents or not—on advocating for your child, and in every facet. So I really appreciate your time. And thank you so much. And if there’s anything else that you want to add, feel free. LAURA: If anyone wants to contact me personally, I’m happy to answer questions if there’s something that anybody wants to know more about. STEPHANIE: So great. Thank you. Thank you so much. LAURA: Thank you. STEPHANIE: For more information about Laura or to follow her blog, visit: josephathome.com. A direct link can also be found in this episode’s show notes. You can also email Laura directly at: laura [at] grahamsfoundation [dot] org. In closing, I’d like to share a few thoughts about today’s conversation with Laura. According to Dr. Besner, with whom I spoke about Short Bowel Syndrome in Episode 1, “if we estimate that a newborn baby has approximately 200 centimeters (78.74 inches) of intestine, they have to be left with at least 40 centimeters (15.75 inches) in order to be able to nourish themselves and get off TPN.” As a result of his bout with NEC, Joseph had only one centimeter (0.4 inches) more remaining. So first, I would like to take a moment to celebrate Joseph’s survival, courage, and strength. And that of his family. Both Joseph and his parents have shown remarkable resiliency while dealing with the daily effects of his bout with NEC. Second, I would like to reiterate that I strongly believe that a cure for NEC, once found, will have a far reaching impact not only on Gastroenterology (the digestive system and its disorders) as a whole, but also all of the patients like Joseph, and families like Laura’s. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

In this podcast, Editor-in-Chief Kelly A. Tappenden, PhD, RD, interviews Darlene G. Kelly, MD, PhD, FACP, FACG, about her article Short Bowel Syndrome: Highlights of Patient Management, Quality of Life, and Survival published in the May 2014 issue of JPEN. Click here to read the full article.

Mr. Andrew Jablonski is a leading voice in patient advocacy. He is the Founder and CEO of the Short Bowel Syndrome Foundation, a charity organization that supports the community of patients and caregivers who are impacted by the rare intestinal disease Short Bowel Syndrome, and the healthcare providers who care for them. In less than 3 years, the foundation has grown to over 3000 followers and members who are affected by this condition. Andy works closely with a number of different organizations including the National Organization of Rare Disorders as well as leading medical centers in order to increase the understanding of SBS. Andy is currently working toward his BA in Human Relations and plans to pursue a Masters of Arts in Counseling, which will enable him to become a Licensed Mental Health Practitioner.