Crohn’s – Own Your Crohn's

autoimmune disease, chronic illness, Crohn's, living with IBD, medical trauma, Mental Health, Mindfulness, Ostomy, PTSD, stigma, Ulcerative Colitis

Navigating Mental Health in Crohn’s Disease

December 5, 2024

Did you know that approximately 25% of people living with inflammatory bowel disease (IBD) report significant symptoms of post-traumatic stress (PTS)? This PTS is directly related to disease experiences and related hospitalizations and is referred to as IBD-PTS. So what is IBD-PTS? It is when a patient experiences significant trauma related to the underlying condition and that trauma flashes back in the form of nightmares and unwanted memories. It may result in disturbed sleep, hypervigilance, and even low mood, including depression and anxiety. Did you also know that there is a bidirectional relationship between IBD and depression and anxiety? This means declining mental health can contribute to disease activity, and IBD activity can also…

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Highlights from ACG 2024: SAIA’s IBDesis’ Patient Experience

December 4, 2024

By: Madhura Balasubramaniam, Sharan Khela & Tina Aswani-Omprakash Our patient advocate team, SAIA’s IBDesis, were honoured to participate in the American College of Gastroenterology’s (ACG) Annual Scientific Meeting in Philadelphia, PA, USA, between October 25th to October 30th, 2024. As patient advocates, we are grateful for the opportunity to learn about the latest advancements in the IBD and GI space more broadly. Here are some of our key takeaways from the conference! Understanding the Treatment Landscape (Madhura Balasubramaniam) Dr. Miguel Regueiro provided a comprehensive overview of the various therapies available today to treat IBD and their safety profile, as illustrated by the safety pyramid: It is very heartening for us…

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SAIA is proud to announce Tina Aswani-Omprakash, MPH as our full-time CEO!

November 18, 2024

SAIA is honoured to announce that Tina Aswani-Omprakash, MPH, is now our full-time Chief Executive Officer 🎉🎉 Written by Madhura Balasubramaniam, Sharan Khela, Dr. Neilanjan Nandi & SAIA’s Board of Directors Tina is a patient advocate and thought leader par excellence, with several years of experience in spearheading international health advocacy efforts within and beyond the GI space. Tina’s work with Own Your Crohn’s has been groundbreaking for communities of colour, especially the South Asian community, where discussions around inflammatory bowel disease (IBD) have historically been clouded by cultural stigmas and misconceptions. Tina brought to light and underscored these hidden cultural considerations that shape healthcare for communities of colour across the world.…

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How Ostomy Surgery Impacted My Life

October 5, 2024

How ostomy surgery gave Tina Aswani-Omprakash her life back and the impact these surgeries can have in IBD treatment. Originally published on IBD Social Circle’s Blog It is estimated that approximately three-quarters of Crohn’s disease patients and a third of ulcerative colitis patients will need surgery at some point or another in their disease journey. What’s often not discussed enough, though, is how many of those surgeries will lead to ostomies. So, what is an ostomy and how does it help patients with inflammatory bowel disease (IBD)? According to United Ostomy Associations of America (UOAA), ostomy surgery is a lifesaving procedure. It allows bodily waste to pass into a medical…

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Managing Crohn’s Disease and Going Back to School

September 4, 2024

In the summer of 2023, I graduated from Mount Sinai’s Icahn School of Medicine with a Master of Public Health (MPH) degree. In 2018 and 2019, as I was considering supplementing my patient advocacy work with a formal education in health, it was daunting to think how I would manage Crohn’s disease while studying and keeping up with the rigors of a graduate degree program. You see, even contemplating grad school was a huge undertaking when I was accepted into Mount Sinai’s Certificate of Public Health program in 2019. As I slowly mustered up the courage to transfer into the MPH program in early 2020, I felt scared yet hopeful…

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My Real World Experience with Intestinal Ultrasound

August 12, 2024

Last week, I had my first intestinal ultrasound (IUS). I had been very nervous the last month getting ready to go in for IUS as I’ve been having weird gut symptoms the last few months. My ileoscopy has been scheduled for 3 months out, so my doctor and I decided it might be best to have an IUS done in the meantime. What is IUS you ask? It is a modality that can visualize bowel inflammation, thickening, and fistula tracts in addition to taking a look at severity and extent of inflammation. It doesn’t require bowel prep or gross contrast (!!), it’s not invasive, results can be discussed in real…

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What I’ve Learned About Starting an Advanced Therapy for Crohn’s Disease

March 2, 2024

Are you getting ready to start an advanced therapy (for example, a biologic or small molecule medication) for the first time for your Crohn’s disease? Or perhaps this is round 2, 3, or 4 when it comes to trying advanced therapies to better manage your Crohn’s? Whether it’s your first rodeo or not, it’s important to know all the ins and outs so you can make appropriate decisions for your care in conjunction with your gastroenterologist. I have been there, and this is what I’ve learned about navigating my care and feeling empowered when getting ready to start a new therapy. Read more on the HealthGrades website: https://www.healthgrades.com/right-care/crohns-disease/what-ive-learned-about-starting-an-advanced-therapy-for-crohns-disease Originally Published on…

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Accepting My Crohn’s Disease to Finally Become Me

January 15, 2024

A person I admire once said, “Once you stop fighting your illness, you will allow acceptance to emerge.” I guess I had never looked at illness that way before. Society tells us to fight illness to our last breath, but is it really a fighting attitude we should have? This thought was something I began to ponder after hearing this statement. It took me months to process and understand what fighting vs. acceptance meant for my Crohn’s disease. Read more on the Healthgrades website: https://www.healthgrades.com/right-care/crohns-disease/accepting-my-crohns-disease-to-finally-become-me. Originally Published on Healthgrades.com, Written by Tina Aswani-Omprakash

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How to Enjoy Your Favorite Cultural Foods Living with Crohn’s Disease

December 19, 2023

Eating with Crohn’s disease can be a challenge as it is, and especially so during cultural events when there are food and festivities galore. I’ve struggled immensely with my diet as a South Asian American woman living with Crohn’s disease. Coming out of the hospital flare after flare, surgery after surgery, it was difficult to get care that would consider the cultural foods I was accustomed to eating… Read more on the Healthgrades website: healthgrades.com/right-care/crohns-disease/how-to-enjoy-your-favorite-cultural-foods-living-with-crohns-disease Originally Published on Healthgrades.com, Written by Tina Aswani-Omprakash, Medically Reviewed by Lisa Valente, MS, RD

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When Diagnoses Accumulate – My Endometriosis Journey

August 28, 2023

Last spring, just when I had thought I had turned a corner and had many of my conditions better controlled, I developed a ton of crippling pelvic pain. Within a couple of days, I started bleeding a lot, which made no sense because I had been on hormones for years to stop my periods. Hormonal therapy was presented to me as a treatment option by Mayo Clinic’s gynecology team because I had many peritoneal inclusion cysts (scar tissue filled with fluid in my pelvis) that were wreaking havoc on my bladder before and after major surgeries done to remove my j-pouch. So, it was either hormonal suppression of ovulation or a hysterectomy at age…

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