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This week we spoke to Matthew Kasabian! Matt told us about being diagnosed with IBD in college and  how isolated it made him feel. He talked about how he saw all his friends out living their young, fun lives on social media and how frustrated he felt but also how he used these feelings of isolation and frustration to motivate him to seek out new treatments and new healthcare providers. We talked to him about the holistic diet he tried, we discussed his J-Pouch surgery and how living with an ostomy during that process helped him heal and gave him his life back, we talked about his healthy lifestyle of eating well and working out (with a few High Noons and other drinks incorporated), and about job hunting while going through the J-Pouch surgery process. Finally we talked to him about how he stays so positive and what an incredible impact an ostomy nurse named Andrew had on his life and his recovery. 

Links: 

• Ostomy support and resource- United Ostomy Association 
• What is C.Diff and how is it treated? - Mayo Clinic
• IBD and Body Image- Crohn's & Colitis Foundation - Campus Connection 
• Nutrition Tips for IBD- UCSF Health 

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This week we tried something new! We let our friend Stacey Collins guest host the show! Stacey is a Registered Dietitian who specializes in IBD and our guest this week is Neha Shah who is also a Registered Dietitian who specializes in IBD. In addition to being a RD, Neha is also also a certified nutrition support clinician (CNSC), credentialed by the National Board of Nutrition Support Certification, a certified health education specialist (CHES), credentialed by the National Commission of Health Education Credentialing, and holds a  Master’s in Public Health.  She is in private practice but also is integrated into the IBD Center at UCSF.  Beyond caring for her patients, she continues to provide lectures to healthcare providers, supervise nutrition interns, give community talks, author articles, and plan research studies with the medical teams. Neha is a powerhouse and a light. 

They had such an interesting peer-to-peer conversation on diets and IBD, the cultural aspects of diet and how to navigate that with IBD,  learning "cultural humility" and how to work with people from other cultures, and so much more. Robin and I really enjoyed eavesdropping on their conversation and I know you'll be just as fascinated. 

Links: 

• South Asian IBD Alliance- Neha is on the board and super active with SAIA! 
• Nutrition and IBD info- UCSF health 
• Diet and Nutrition Info- Crohn's & Colitis Foundation 
• Diet and Nutrition Info- Crohn's Colitis Canada

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This is week we had such a fun conversation with Wendy Kovich! Wendy was diagnosed with Crohn's in her 20's very shortly after she married and it's been quite the roller coaster since. We talked to her about navigating through treatment options and surgeries, working with her healthcare team to get pregnant, dealing with a fistula, and what it's been like to raise her twins while having very active disease. We spent a lot of time talking about her decision to move from a J-Pouch to a permanent ostomy, what it took for her to emotionally make this decision, the team it took to do the surgery and to repair her fistula, how she learned from Instagram Influencers on how to care for her ostomy, and how much she loves her "Barbie Butt." We also laughed so hard about how her "white coat syndrome" manifests itself.  

We loved talking with Wendy and we definitely feel like we have a new best friend. 

Links: 

• Pregnancy and IBD Factsheet- Crohn's & Colitis Foundation  
• Pregnancy & IBD info- GI Society - Canadian Society of Intestinal Research
• Fertility and IBD- Crohn's & Colitis Canada
• Some great blogs about pregnancy and IBD- Lights, Camera, Crohn's - Natalie Hayden 
• United Ostomy Association
• Wendy loves and referred to Gaylyn Henderson who runs Gutless and Glamorous! 
• GREAT Resources for moms with IBD- IBD Moms
• Complications and Extraintestinal Manifestations info- Crohn's & Colitis Canada

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This week we talked to Dr. Tauseef Ali! Dr. Ali is the medical executive director of Saints Digestive Institute and director of IBD clinical and research program at SSM Health Saint Anthony Hospital. He is also a Clinical Assistant Professor of Medicine at the University of Oklahoma in the Digestive Disease and Nutrition section and adjunct faculty at Oklahoma State University. Additionally he's a board member and lead for professional outreach and education for the South Asian IBD Alliance.  We talk to him about establishing an IBD Center of Excellence, we talk to him about all that he does for SAIA, we talked to him about the upcoming 2nd edition of his book "Crohn's and Colitis for Dummies", and we talk to him about "med twitter" and how active he is on there. 

Dr. Ali was so much fun to talk to and so passionate. I think you'll enjoy this episode just as much as we did! 

Links: 

• Learn more about Dr. Ali's 2nd edition of "Crohn's and Colitis for Dummies" 
• South Asian IBD Alliance

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This week we had a great conversation with our friend Jason Wild! We talked to him quite a bit about how he found a community of people living with IBD through Camp Oasis and how he's evolved from a counselor to a "Leader in Training" lead to a Camp Director. You can tell how much he loves camp and loves the community he's formed through it. We also talk to him about his use of medical cannabis to treat his UC and how he worked with his gastroenterologist to move to this option and to monitor his health. It was really interesting to hear a patient perspective on medical cannabis especially after our conversation about this with Dr. Jami A. Kinnucan a few weeks ago. 

Links: 

• Our episode with Dr. Jami A. Kinnucan
• Camp Oasis- a camp for kids with IBD and volunteers with IBD- Crohn's & Colitis Foundation 
• Information on medical cannabis- Crohn's & Colitis Foundation 
• Information on medical cannabis- GI Society- Canadian Society of Intestinal Research
• Information on medical cannabis- Crohn's & Colitis Canada

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UPDATE: Since this recording, Dr. Hamnett has launched her own practice, Spruce Physical Therapy!  You can find her on IG and TikTok @Spruce.pt. We hope you'll check her out if you are in NYC! 

This week we shared a Rowdy Mermaid and had such an interesting conversation with Dr. Claire Hamnett! Dr. Hamnett is a pelvic floor physical therapist at Solstice Physiotherapy in New York City and she has a special interest in working with people living with IBD. We talk to her about how pelvic floor PT can help with scar tissue issues, pain management, and surgical recovery. We also talk to her about how it can help with bladder, bowel, and sexual dysfunction. We also talk about insurance coverage for PT and how to access it. We also find out the surprising reason why she became and avid runner. Learn with us friends! This was such an informative conversation and Dr. Hamnett is super knowledgeable and passionate about pelvic floor PT!!

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Links: 

• Articles for the public and how to find a pelvic floor PT- Academy of Pelvic Health Physical Therapy
• Journal Article- Systemic Review: Pelvic floor muscle training for functional bowel symptoms in IBD
• What is Pelvic Floor PT- Solstice Physiotherapy

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This week we talked to Dr. Jeanne Tung! Dr. Tung is the Director of the Center for Pediatric IBD at OU Health. We talked to her helping kids transition and transfer to adult IBD care and we talk to her about her involvement in ImproveCareNow which is a collaborative made up of pediatric IBD patients, parents, and healthcare providers that works to (big surprise) improve care for kids living with IBD.  We also talk to her about helping parents with kids with IBD to let go and allow their kids to start to take charge of their own healthcare.

Dr. Tung is such a passionate advocate for kids with IBD and we had so much fun talking to her.

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Links: 

• Improve Care Now
• Transitioning Tool Kit from GIkids.org 
• Surgery decision making tool kit from GIKids.org

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This week we bring back Stacey Collins, RDN to celebrate(?) jpouch-iversaries. We talked about what Stacey and I have learned and what's been happening in our lives. We shared some tips and some of the not-so-pretty aspects of recovery to give you a better understanding of what to expect if you're discussing j-pouch surgery with your GI. Alicia decided to keep in some of the stuff she usually cuts, so please excuse the entire minute of just us laughing at the beginning. We do actually get down to business.

Cheers!

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Links:
J-pouch facts and infographic - UOAA
J-pouch surgery video - Crohn's & Colitis Foundation
J-Pouch Handbook - Penn State Health

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This week we talk to Ben and Katie Portier. We talk to them about navigating Ben's IBD from dating to married life, from flares to hospital stays, to surgery, and life with an ostomy. We talk about anxiety, body image, managing relationships, and being social. We discuss finding support for yourself and offering support to others.   We hope you enjoy - Cheers!

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- Living with a permanent ostomy - UOAA
- Emergency ostomy resources - UOAA
- Anxiety and IBD - Crohn's & Colitis Foundation
- Eating with an ostomy - UOAA
- Spouse / caregiver resources - Well Spouse Association

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This week we talked to self-described "IBD Dinosaur" Dewey Thom! Dewey has been living with IBD for more than 40 years and has lived quite a bit of that time with a J-Pouch. We talked to him a lot about the importance of finding a community of people who understand IBD. We talk about his accidental participation in a support group and his subsequent role as a volunteer facilitator for the group. He reminisced about his memorable time as a counselor for a camp with kids with IBD and what an amazing experience camp can be for the kids and also the adults. We also talked to him about obstructions, strictures, pouchitis, and how having IBD may have shaped his career decisions. Dewey is a gem and I know you'll enjoy our conversation.

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Links:
- Information about J-Pouch surgery and possible complications- Crohn's & Colitis Foundation
- Information about J-Pouch surgery and what you need to know- UCSF Health
- Video on Pelvic Pouch and Pouch Complications- Cleveland Clinic (professional education but still quite understandable)
- Support options including support groups- Crohn's & Colitis Foundation
- Information on Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation 

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