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Empowering the Chronically Ill & Disabled to Lead Fuller Lives

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  • autoimmune disease,  Black Lives Matter,  Caregiving,  Coronavirus,  Crohn's,  Dating & Relationships,  J-Pouch,  living with IBD,  Minority Health,  Ulcerative Colitis,  Women's Health

    Taryn’s Journey: Navigating Relationships and IBD During the Pandemic

    April 1, 2021

    “I think I might be at the start of a partial obstruction.  What do I do?” The words I shared with my husband in late March 2020 weren’t rhetorical.  It was more like I dropped a mini bomb into an already stressful situation. Even though I’ve had a series of partial bowel obstructions over the years, this time felt different. We were at the beginning of the pandemic.  At a time when merely stepping  outside seemed dangerous, a trip to the ER felt terrifying. In that moment, I was asking for much more than just advice.  I wanted – no, needed  – reassurance that regardless of what was happening with…

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    Tina Aswani Omprakash

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    Receiving the COVID-19 Vaccine as a Patient with Several Autoimmune Conditions

    March 22, 2021

    What the IBD Community Needs to Know About Getting a COVID-19 Booster

    December 11, 2021

    Key Takeaways from Crohn’s & Colitis Congress 2023

    February 24, 2023
  • Cultural Stigma,  endometriosis,  Minority Health,  Ostomy,  Women's Health

    ~OYC Trailblazers~ Tanya’s Journey with an Ostomy & Endometriosis

    March 25, 2021

    My name is Tanya and I live with endometriosis and a permanent ileostomy. I’m of North African and Asian background from Mauritius. For years, I experienced uncomfortable bowel pains and no one could diagnose me properly. I struggled with retaining weight as all of my food would pass through me. It felt as though I was intolerant to all foods. I often found blood in my stools, and I felt permanently bloated. I eventually resorted to eating the same meals everyday to avoid upsetting my stomach. Work colleagues would notice and question why I had the same lunch everyday.  Like many suffering from endometriosis, I was misdiagnosed with IBS and…

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    Tina Aswani Omprakash

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    How Ostomy Surgery Impacted My Life

    October 5, 2024

    Demi’s Journey: Coming Out with Ulcerative Colitis as a Filipino Woman

    May 3, 2021

    ~OYC Trailblazers~ Tanya’s Pregnancy Journey Living with Crohn’s Disease in India

    November 5, 2022
  • Colorectal Surgery,  Crohn's,  Egg-Freezing,  fistula,  IBD Parenthood Project,  living with IBD,  Minority Health,  Motherhood,  Ostomy,  Pregnancy in IBD,  Ulcerative Colitis,  Women's Health

    IBD Motherhood Unplugged: Womanhood Questioned by Crohn’s Disease

    February 22, 2021

    Motherhood is so much more than a word—it’s an expectation and an identity. It’s a right of passage many girls dream of when they think about their future and what their family will look like. But family planning, pregnancy, and motherhood are far from a given, especially for those with chronic illness. This week my post kicks off IBD Motherhood Unplugged, an ongoing series that will be shared on my dear friend and fellow Crohn’s advocate, Natalie Hayden’s blog: Lights, Camera, Crohn’s. My post has been in the works for 2+ years sitting in my drafts folder with me hoping that I’ll eventually be able to speak up for women…

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    Tina Aswani Omprakash

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    Real Talk about Ostomies

    October 5, 2018

    Love Knows No Disability

    July 2, 2019

    When Diagnoses Accumulate – My Endometriosis Journey

    August 28, 2023
  • acceptance,  advocacy,  awareness,  coping with flares,  Crohn's,  diversity,  living with IBD,  Mental Health,  Minority Health,  stigma,  Ulcerative Colitis,  Women's Health

    ~OYC Trailblazers~ Anisha Zumba-ing Her Way into 2021!

    January 28, 2021

    This blog post has been done in collaboration with Girls With Guts Community Connection. By Anisha Gangotra My name is Anisha, I’m 37 years old and I live in Buckinghamshire in the United Kingdom. I’ve lived with ulcerative colitis since 2008, from the age of 24. I experienced my first colitis symptoms following a two-week holiday abroad. My stomach hadn’t felt quite right but I’d also had my period when I was on holiday so I assumed that it was a mixture of jet lag, my body adjusting to a different environment and my menstrual cycle. I’ve always had a sensitive stomach so I didn’t think much of it. When…

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    Tina Aswani Omprakash

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    Being Brown and Coming Out of the IBD Closet: The Chronic Illness Experience

    August 7, 2018

    Accepting My Crohn’s Disease to Finally Become Me

    January 15, 2024

    World IBD Day Panel Discussion: Experiences of Minority IBD Patients & Caregivers

    May 23, 2020
  • Colorectal Surgery,  coping with flares,  Crohn's,  J-Pouch,  Kock Pouch,  living with IBD,  Ostomy,  Ulcerative Colitis,  Women's Health

    ~OYC Trailblazers~ Mara Living Her Best Life with a Kock Pouch in Germany

    December 7, 2020

    My name is Mara and I am from a small state in Germany called Bremen. I was diagnosed with inflammatory bowel disease in 2016 when I was 21. Shortly after my diagnosis, I celebrated my 22nd birthday. I am pursuing my Ph.D. in Marine Microbiology working to learn more about unknown microorganisms found on the seafloor. One week after handing in my Bachelor’s thesis, I became severely ill with sudden and bloody diarrhea. I could not leave the toilet at all. A few days after having these initial symptoms, I was admitted to the hospital. The verdict was clear: I was diagnosed with ulcerative colitis. I thought this would be…

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    Tina Aswani Omprakash

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    Sepsis Is a Severe, Life-threatening Complication for IBD Patients

    September 22, 2018

    The Impact of IBD on Racial & Ethnic Minorities

    April 24, 2019

    Pelvic Pain in IBD: An Overlooked Complication

    August 9, 2019
  • Body Positivity,  cervical cancer,  Dating & Relationships,  diversity,  Mental Health,  Minority Health,  Ostomy,  Self-image,  stigma,  Women's Health

    ~OYC Trailblazers~ Jennylyn’s Ostomy Love Story in the Philippines

    October 30, 2020

    My name is Jennylyn Ajes and I’m 32 years old from Laguna, Phillippines. In 2018, I was diagnosed with stage 2b cervical cancer, which means I had a tumor that had grown beyond the cervix and uterus.[1] During this time, I had undergone chemotherapy, radiation therapy and brachytherapy. I had to do these therapies for 5 months total and none of it was easy. The brachytherapy required internal radiation therapy to get to the source of the cancer and try to wipe it out. I felt fine for the first 3 months after treatment but I really struggled with my confidence losing most of my hair and eyebrows due to…

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    Tina Aswani Omprakash

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    Lilly Singh’s ‘Choli Ke Peeche Kya Hai?’: My Anthem for Body Positivity

    April 1, 2019

    Weekend Long IBD Retreat Helped Me to Own My Crohn’s

    August 24, 2019

    Ostomy Awareness Day: Empowering Ostomates to Live Fuller Lives

    November 22, 2019
  • advocacy,  Crohn's,  diversity,  Gastroparesis,  health equity,  Healthcare Disparities,  Healthcare Marketing,  living with IBD,  Patient Voice,  Ulcerative Colitis,  Women's Health

    MM&M Transform Talks: Prioritizing the Patient Voice

    September 20, 2020

    I recently had the opportunity to work with the MM&M Transform conference on a panel discussion on Prioritizing the Patient Voice in anticipation of their conference on September 29th-30th. A panel of 3 of us patient advocates (Tonya Cherie Hegamin, Type 1 Diabetes; Teresa Johnson, Multiple Sclerosis & Heart Disease; and me, Crohn’s Disease & Gastroparesis) discussed why it’s so important to engage patients in healthcare discussions, from digital health to biotechnology and pharmaceuticals. At the forefront of our conversation was a topic near and dear to all 3 of us: diversity, inclusion and health equity as well as medical accessibility for patients of color like ourselves. Check out our…

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    Tina Aswani Omprakash

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    The Impact of IBD on Racial & Ethnic Minorities

    April 24, 2019

    University Accommodations in the COVID-19 Era

    September 7, 2020

    A Day on the Hill: Putting a Face on IBD Legislation

    May 26, 2018
  • advocacy,  Colorectal Surgery,  Crohn's,  fistula,  Fistulizing Disease,  J-Pouch,  Mental Health,  Minority Health,  Ostomy,  Self-image,  stigma,  Ulcerative Colitis,  Women's Health

    FitWitMD’s Live Discussion on Perianal Fistulizing Crohn’s Disease

    August 7, 2020

    A couple weeks ago, esteemed IBD specialist, Dr. Neilanjan Nandi (@fitwitmd) of Penn Medicine, hosted a live discussion with me on my experiences around Perianal Fistulizing Crohn’s Disease. We opened up the discussion to an international audience and allowed for a Q&A on this very deeply stigmatized topic that’s often not discussed or understood very well. To view the video, please watch here: I have been very open about my struggles with multiple fistulae in female parts. I have lived with 5 rectovaginal fistulae and 1 pelvic transphinteric fistula that was headed to break through at the site of my tailbone, nearly paralyzing me. To read more about my experiences,…

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    Tina Aswani Omprakash

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    July 23, 2020

    Talking Gut Podcast Episode 20: Tina Aswani Omprakash on Resilience & GRITT

    May 30, 2020

    Happy World IBD Day from Digestive Disease Week (DDW)!

    May 22, 2019
  • Ableism,  Colorectal Surgery,  Crohn's,  fistula,  Mental Health,  Minority Health,  Ostomy,  stigma,  Ulcerative Colitis,  Women's Health,  World IBD Day

    What IBD Awareness Means to a South Asian American Woman with Crohn’s

    June 17, 2020

    By Tina Aswani Omprakash Originally published in IBD Relief on May 18th, 2020: https://www.ibdrelief.com/ibd-stories/my-ibd-story-tina-aswani-omprakash I remember waking up from a surgery to repair a rectovaginal fistula in late 2011 and being yelled at by an elderly family member for ruining their lives. Even though I was still in a haze in the recovery room, the tears of pain and anguish washed over me. Whether it was my body violating me with perianal fistulizing Crohn’s disease or family and friends constantly reminding me of how much of a burden I was, the floodgates opened in that moment as I asked that family member to please excuse themselves from the recovery area. You see, it’s really…

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    Tina Aswani Omprakash

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    What Will People Think? ~A Short Documentary by Chealynn Feaster

    December 27, 2019

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    July 2, 2019

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    October 17, 2019
  • advocacy,  awareness,  Biosimilars,  Canadian healthcare,  coping with flares,  Crohn's,  fistula,  Forced Medical Switching,  living with IBD,  Lobbying,  patient rights,  Ulcerative Colitis,  Women's Health

    Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada

    December 15, 2019

    By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…

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    Tina Aswani Omprakash

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Recent Posts

  • Feb 18, 2025 How to Own Your Crohn’s & Ostomy While Traveling to India
  • Jan 05, 2025 Key Takeaways from Advances in IBD (AIBD) 2024
  • Dec 05, 2024 Navigating Mental Health in Crohn’s Disease 
  • Dec 04, 2024 Highlights from ACG 2024: SAIA’s IBDesis’ Patient Experience
  • Nov 18, 2024 SAIA is proud to announce Tina Aswani-Omprakash, MPH as our full-time CEO!

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