Bowel Moments

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This week we spoke to Nicole and Luke Pavlin! Nicole is living with Crohn's disease and Luke is her husband and care partner. We talked about the process for her to get diagnosed and the unusual birth defect she has that complicated her case. We talked about her ongoing struggles with food anxiety and medical trauma and how the GRITT- IBD program and staff have helped her cope. We talked to her about how her Dietitian and her mental health team have worked together to help her. We talked about her participation in a couple of research studies being put on by Mount Sinai including one with wearable devices.  Nicole talked about why participating in these types of studies was especially important to her as a science educator and to help her feel like she was helping others. We also talked about her volunteer role with the nonprofit Nutrition Therapy for IBD.

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: 

• Wearable Devices and IBD: Hear One Woman's Experience as a Citizen Scientist
• Mount Sinai IBD Center Innovative Programs (GRITT)
• Nutritional Therapy for IBD
• Meckel's diverticulum

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This week we talked to Nir Salomon! Nir is the Founder and Director of the Integrative Gastroenterology unit at Sheba Medical Center in Israel. He's also the Co-Founder and Head of R&D at Evinature. Nir has done research for more than a decade on neutraceuticals for the treatment of IBD. We talked to him about his training in this area, what neutraceuticals are and how they and other types of integrative medicines are used in IBD care. We talked to him about how he chose the items that he decided to research and how he developed Evinature's CurQD protocol. We discussed the clinical trials that he went through and how this protocol can be helpful to the treatment regime of IBD. Finally we talked about research in Israel and why they may be able to research things that are not as readily studied in the United State. It was a really interesting conversation! Enjoy!

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! ;)

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This week we talked to Dr. Michael Dolinger! Dr. Dolinger is an Assistance Professor of Pediatric Gastroenterology at the Icahn School of Medicine and Mount Sinai Kravis Children's Hospital. Dr. Dolinger leads the Henry and Elaine Kaufman intestinal ultrasound program at the Susan and Leonard Feinstein Inflammatory Bowel Disease Center, the first of its kind in the United States. We talked to him all about intestinal ultrasound and how revolutionary it is as a noninvasive tool to monitor disease activity and treatment response. It's seriously super cool and we had such an interesting conversation with Dr. Dolinger! We also talked to him about his very personal reason for going into pediatrics and focusing on Inflammatory Bowel Disease. Dr. Doling is a joy and we loved speaking to him more than eating a pint of ice cream.

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: 

• Intestinal Ultrasound Ushers in New Era of IBD Treatment article- Mount Sinai
• Exploring uses of ultrasound in monitoring and treating IBD- Crohn's & Colitis Foundation USA
• Real Time Ultrasound of the Intestines video featuring Dr. Dolinger- Mount Sinai Health System YouTube channel

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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 Hospital
• Short Bowel Syndrome pamphlet- Crohn's & Colitis Foundation- USA
• Information on Parenteral Nutrition (TPN)- Cleveland Clinic
• Information on Lori's Support Group 

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This week we met Kishore Pardasani! Kishore was diagnosed with UC when he was in college and struggled to find the right treatment for his disease. Eventually he decided to manage his disease through a permanent ostomy. As he was learning to navigate life with an ostomy he was underwhelmed by the tool available to help him track his supplies, measure his output, and manage his ostomy. That lead him to develop an app called OstoBuddy! OstoBuddy worked well for him and so he decided he needed to offer it to others living with ostomies. He applied for the Lyfebulb challenge addressing the unmet needs of the IBD community and was selected! We hear his whole riveting story, we brainstorm ways to improve ostomy supplies, we talk about the craziest thing he did after being diagnosed with UC, and what it was like to grow up in Barbados. It was such a fun conversation!

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: 

• Press Release about OstoBuddy being selected for the Lyfebulb challenge
• Ostobuddy App website
• Osto Group
• United Ostomy Association

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This week Alicia had a guest host! She was joined by friend of the show and past guest- Lauren Erbach Barnfield and they spoke to Dr. Abdul Aziz Elkadri! Dr. Elkadri is an Assistant Professor at the Medical College of Wisconsin where he specializes in pediatric IBD. We talked to Dr. Elkadri about his personal connecting to IBD, how he inadvertently chose GI as his specialty and why he prefers treating kids. We also talked to him about receiving his medical training in Lebanon and how that created some hurdles to him practicing in the US post training. We discussed his research into genetics and into very early onset (VEO) IBD and working with little kids (and their parents). We also talked about talking to teens about weight and eating when they have IBD and the impact of societal pressure/reward on weight. Lauren and Alicia had such a good laugh with Dr. Elkadri and always appreciate his irreverent sense of humor.

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: 

• Listen to Lauren's episode! 
• Diet and Nutrition and IBD- Crohn's & Colitis Foundation- USA
• Journal Article: "Very Early Onset Inflammatory Bowel Disease: A Clinical Approach With a Focus on the Role of Genetics and Underlying Immune Deficiences"
• Article: "Practicing Medicine in the US as an international medical graduate"- American Medical Association 

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This week we spoke to Sharan K.! Sharan lives in the UK and is the creator of the Crohn's Babble Instagram account as well as the Director of Digital Engagement at the South Asian IBD Alliance! We spoke to her about getting diagnosed and navigating her Crohn's in the UK's healthcare system. We talked to her about how challenging the system could be at times being of South Asian descent because of language barriers and lack of understanding around how the diet information may translate to her family's cuisine. We talked to her about finding information and community online and how that helped her when she was living with an ostomy. We also discussed the importance of self-care and how she helped to form IBDesis- which is a Facebook group for people of South Asian descent living with IBD- and how that prompted the formation of the South Asian IBD Alliance.

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: 

• Sharan's Instagram account- Crohn's Babble
• South Asian IBD Alliance
• IBDesis Facebook Group
• Crohn's and Colitis UK

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This week we spoke to Barbara Cramer! Barbara has 2 children living with Crohn's disease. You met her daughter Hannah in episode 13 and this week you'll get to hear Barbara's side of some of Hannah's stories and experiences. Barbara's children were diagnosed at different ages- one as a teen and one has an adult- and have vastly different styles in how they cope with their disease. We talk to her about how she's handled these vastly different ways and how she's helped both of her children navigate this new world. We talked to her about leading a support group with Hannah for families affected by IBD. We discussed the helpful and not-so-helpful things that people say when you talk about having a kid with a chronic illness, were to find accurate information about IBD, and how important it is to know that you're not alone.

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: 

• Hannah's episode! 
• Ways to find support including the Power of 2 and Support groups mentioned on the show- Crohn's & Colitis Foundation- USA
• Tools to help parents of kids with IBD- ImproveCareNow

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This week we talk to Dr. Brad Pasternak! Dr. Pasternak is the Director of the Inflammatory Bowel Disease Program at Phoenix Children's Hospital. We talked to him about how his UC influenced his choice to go into pediatric gastroenterology and how he's coped with his disease. We talked to him about his medical training in Israel and the differences between the Israeli and American medical system. We talked to him about his research and how doing basic science research helped him realize how much he loves patient care and developing deep relationships with his patients and their families. Finally we discussed his volunteer project providing medical care to a small town in Mexico.

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! ;)

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This week we had an entertaining conversation with Mara Shapiro! Mara was diagnosed with Crohn's disease fairly recently but has struggled with GI symptoms for quite some time. Her Crohn's was diagnosed after she was dealing with debilitating iron insufficiency. We talked to her about receiving iron infusions and how she's learned to read her labs to better know what's happening with her iron levels. We also talked to her about her chronic C Diff infections and using Fecal Microbiota Transplant to deal with it. It was quite the story and I think you'll laugh along with us when you hear it. Finally we talk to her about her other health conditions and how they've helped her become a fierce advocate for her health and to help her find community.

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: 

• Crohn's & Colitis Young Adult Network
• Generation Patient
• Information on Fecal Microbiota Transplant- Mount Sinai Hospital
• Video on how FMT works- Johns Hopkins Hospital

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