Hi listeners! Thanks for catching our Monthly Round Up for May 2020. What a strange time, indeed! We have had plenty of time to reflect on ourselves and the conversations we have been having with guests…and we are definitely feeling that all walks of life are being impacted right now. The #SpoonieCommunity is no exception. We’re incredibly grateful to all our listeners and support networks, and we certainly hope that everyone is continuing to thrive right now.
In May, we had the privilege to speak with Lauren Reimer (@PrettyCouchPotato) about life with CIPO and relying on IV nutrition; Sarah Ramey about her 15-year misdiagnosis and mysterious illness journey; Tina Aswani Omprakash about her blog Own Your Crohn’s and sharing our stories to live fuller, happier lives; and Danielle Gulden and Joe Teeters of Double Baggin’ It about ostomies, proctocolectomies, end ileostomies, and using humor for advocacy and awareness. These episodes are all amazing in their own ways, but we must caution you up front: as always, we spared no detail in some pretty in-depth conversations on the human body. Prepare to be amazed!
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Lauren Reimer is a blogger, content creator, and chronic illness community leader based in Fayetteville, Arkansas. At the age of 13, she was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO), which means that her digestive tract acts as though it is obstructed — even when it is not. Lacking peristalsis, the worm-like movement that moves food, fluid, and air through her digestive tract, her body is unable to absorb adequate amounts of nutrients from eating alone. As such, she relies on IV nutrition (total parenteral nutrition, or TPN), administered from a 2.5-liter bag of fluid containing fats, protein, sugars, vitamins, and minerals that infuses over 12 hours while she sleeps. She’s been living on this therapy since her diagnosis, and while unusual, it has sustained her and allowed her to live a full life. She also has two feedings tubes that she uses to decompress her stomach and intestine during her waking hours.
Sarah Ramey (also known by her musical pseudonym Wolf Larsen) is a writer and musician living in Washington, DC. A recipient of the 2018 Whiting Creative Nonfiction Writing Grant, she is the author of the new memoir The Lady’s Handbook For Her Mysterious Illness, a searingly funny and achingly candid retelling of her journey from misdiagnosis and disconnection from her body through 15 years of mysterious illness that she was consistently told was all in her head. And guess what? It wasn’t. The realization that women are so often brushed aside as hysterical, given false psychological diagnoses when their bodies are in crisis, and experiencing exacerbated symptoms because of their lack of acknowledgement led her down a rabbit hole in which she discovered her kin: WOMIs (Women with Mysterious Illness), who are “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. [They are] allergic to…(everything), aching from tip to toe, digestively impaired, and on uneasy terms with [their] reproductive system[s]. [They are] addled, embarrassed, ashamed, and inflamed.” And almost all living with neuro-endocrine-immune issues. Now diagnosed with ME/CFS, and chronically co-morbid conditions CRPS (constant colovaginal pain), POTS, and MCS (multiple chemical sensitivity), she still lives with chronic symptoms and is on a mission to turn her experience into something from which we can learn and improve.
Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind the blog Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness of inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease, and initiatives supporting health concerns for women and racial, ethnic, and sexual minorities.
Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates…and Two Best Friends without Buttholes! Danielle has had ulcerative colitis (UC) for over 27 years. After going through nearly every IBD medication available, going to the bathroom 20-25 times per day, and having a toilet installed in her car (this is not a joke, folks!), she finally kicked her diseased colon to the curb in 2007. Her ostomy (and her stoma named Stella) saved her life and gave her back her life! Joe has also been living with Crohn’s disease for over 27 years. Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries, including two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” Club! What’s that, you ask? Two cheeks, no hole…that butt is just for show! Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and inflammatory bowel disease. They believe in the power of humor, advocacy and awareness.