Don't Google Your Symptoms With CJ Papuro

About IBD

06/27/22

•

32m

About

Comments

Featured In

There aren't as many men who are vocal in the inflammatory bowel disease (IBD) space as there are women. Crohn's disease and ulcerative colitis affect men as often as they do women, but fewer men seem comfortable being public about their disease. That's why Carlos "CJ" Cabrera, who also goes by CJ Papuro, entered the IBD community after his diagnosis of Crohn's. He gives an overview of how difficult it was to be diagnosed as a US veteran using the Veterans Health Administration, his struggles with finding his way with nutrition, the ways in which IBD has affected him as a man, and his advice for other men. Concepts discussed on this episode include:

Athletic Greens — AG1: https://athleticgreens.com/ibdpod
Fragmented Care and IBD: Outcomes in U.S. Veterans: https://ihpi.umich.edu/news/fragmented-care-and-ibd-outcomes-us-veterans
The Incidence and Prevalence of Inflammatory Bowel Disease Among U.S. Veterans: A National Cohort Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3972034/
Maltodextrin, Modern Stressor of the Intestinal Environment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6409436/
How IBD Affects Fertility in Men: https://www.verywellhealth.com/how-ibd-affects-fertility-in-men-4125878
How to Recognize and Diagnose Crohn's Disease in Men: https://www.verywellhealth.com/crohns-symptoms-male-5215367
Arthritis and Inflammatory Bowel Disease: https://www.verywellhealth.com/arthritis-and-inflammatory-bowel-disease-1941772
Should You Exercise If You Have IBD?: https://www.verywellhealth.com/exercising-with-ibd-4582068

Find CJ Papuro at: Instagram: https://www.instagram.com/papuro Instagram: https://www.instagram.com/papurosmokes Instagram: https://www.instagram.com/chill.ghost YouTube: https://www.youtube.com/c/Papuro Find Amber J Tresca at AboutIBD.com: http://aboutibd.com/ Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Facebook: https://www.facebook.com/aboutIBD Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ Credits: Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney Theme music, IBD Dance Party, is from Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single Episode transcript and more information at: https:/bit.ly/AIBD120

Previous Episode

The Restroom Access Act

June 19, 2022

•

30m

Have you ever been out in public and needed a toilet — but there wasn't one available?

This has happened to everyone who lives with an inflammatory bowel disease (IBD, Crohn's disease or ulcerative colitis), which is why so many of us have "bathroom accident" stories. Needing to use the bathroom is a basic human need, but it's treated like an afterthought. That's where the Restroom Access Act comes into play: a law passed in several states that allows people to request access to a toilet when they live with certain conditions.

There is no such law currently in California. That's hopefully going to change thanks to the efforts of Ashlyn Saltzburg and Kelly Silk. Ashlyn is a teenager living with IBD and Kelly is her mom. Their effort to get a law passed in California is nothing short of heroic. Learn about how they got started on this journey to have the Restroom Access Act passed in California, and how you can help.

More information and a transcript: https://bit.ly/AIBD119

Concepts discussed on this episode:

Athletic Greens AG1: https://athleticgreens.com/ibdpod
How the Restroom Access Act Helps Those With IBD: https://www.verywellhealth.com/the-restroom-access-act-1942432
California Assembly Bill 1632: https://legiscan.com/CA/bill/AB1632/2021
Akilah Weber, Assmblymember, District 79: https://a79.asmdc.org/2021-2022-legislation
Shervin Rabizadeh, MD, MBA: https://bio.cedars-sinai.org/rabizadehsx/index.html

Find Amber J Tresca at:

AboutIBD.com: http://aboutibd.com/
Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
Facebook: https://www.facebook.com/aboutIBD
Twitter: https://twitter.com/aboutIBD
Pinterest: https://www.pinterest.com/aboutibd/
Instagram: https://www.instagram.com/about_IBD/

Credits:

Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
Theme music, IBD Dance Party, is from ©Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single

Next Episode

IBD and Biomarkers: What You Need to Know With Andres Hurtado-Lorenzo, PhD

July 11, 2022

•

29m

What if we knew which patients would have severe Crohn's disease or ulcerative colitis? And which wouldn't? How about if we could tell which drug would work best in which patient? Knowing these things would change how inflammatory bowel disease (IBD) is diagnosed and treated. Plus, more importantly: it would improve lives. Dr Andres Hurtado-Lorenzo, Vice President of Translational research and IBD Ventures at the Crohn's and Colitis Foundation explains biomarkers and how they may play into the future of how IBD is diagnosed, managed, and treated.

Resources:

Crohn's & Colitis Foundation:https://www.crohnscolitisfoundation.org/
IBD Plexus:https://www.crohnscolitisfoundation.org/research/current-research-initiatives/ibd-plexus/about
RISK Study:https://www.crohnscolitisfoundation.org/research/current-research-initiatives/pediatric-risk-stratification
IBD Ventures:https://www.crohnscolitisfoundation.org/research/grants-fellowships/entrepreneurial-investing/portfolio
Olink: https://www.olink.com
Foundation for the National Institutes of Health: https://www.fnih.org
Genedata: https://www.com
Glycominds: https://www.glycominds.com/blood-tests-1
PredictImmune:https://www.predictimmune.com/

Research:

Honig G, Heller C, Hurtado-Lorenzo A. Defining the Path Forward for Biomarkers to Address Unmet Needs in Inflammatory Bowel Diseases. Inflamm Bowel Dis. 2020;26(10):1451-1462. doi:10.1093/ibd/izaa210. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7500521/pdf/izaa210.pdf
Honig G, Larkin PB, Heller C, Hurtado-Lorenzo A. Research-Based Product Innovation to Address Critical Unmet Needs of Patients with Inflammatory Bowel Diseases. Inflamm Bowel Dis. 2021;27(Suppl 2):S1-S16. doi:10.1093/ibd/izab230. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8922161/pdf/izab230.pdf
Kugathasan S, Denson LA, Walters TD, et al. Prediction of complicated disease course for children newly diagnosed with Crohn's disease: a multicentre inception cohort study. Lancet. 2017;389(10080):1710-1718. doi:10.1016/S0140-6736(17)30317-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5719489/pdf/nihms923305.pdf
Biasci D, Lee JC, Noor NM, et al. A blood-based prognostic biomarker in IBD. Gut. 2019;68(8):1386-1395. doi:10.1136/gutjnl-2019-318343. https://www.predictimmune.com/wp-content/uploads/2020/09/Biasci-et-al-A-blood-based-prognostic-biomarker-in-IBD-Gut-2019.pdf
de Bruyn M, Ringold R, Martens E, et al. The Ulcerative Colitis Response Index for Detection of Mucosal Healing in Patients Treated With Anti-tumour Necrosis Factor. J Crohns Colitis. 2020;14(2):176-184. doi:10.1093/ecco-jcc/jjz125. https://doi.org/10.1093/ecco-jcc/jjz125