- May 20, 2020
TW/CW: This episode features graphic description of rectovaginal surgery, as well as discussion of suicidal ideation.
Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind 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 for 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 & sexual minorities.
Key links mentioned in this episode:
Tune in as Tina shares:
- that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV)
- that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8)
- that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated
- proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions
- her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home
- the cultural stigma associated with IBD as a woman of South Asian descent
- that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street
- that she developed her first rectovaginal fistula in 2011 — after one year of marriage
- how dehumanizing and desexualizing her experience has been
- that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date
- that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome
- that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries
- that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit
- that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care
- her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis
- that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in
- breaking point: when she became suicidal
- how her mom stepped up for her at her worst
- that she now lives with a permanent ostomy
- that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C)
- that in early 2016, her Crohn’s disease went into remission
- how she’s navigated disagreements between different doctors on her medical team
- that her currently-advised diet consists largely of soup and smoothies
- that one of her doctors now believes she may never have had Crohn’s, but possibly had severe inflammation all along
- that advocacy work has become a coping mechanism for her
- how COVID-19 has influenced her healthcare choices
- how she’s experienced prejudice as a racial, ethnic, and cultural minority — both within and outside the medical system
- that in many ways, “coming out” with her health story 2 years ago was social suicide for her — she lost friends who couldn’t handle either her illness or her outspokenness as an advocate
- the role of mental healthcare in her approach to wellness
- how she got involved in patient advocacy
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