living with IBD – Own Your Crohn's

Colorectal Surgery, Crohn's, Digital Healthcare Innovations, health equity, Healthcare Disparities, living with IBD, Patient Voice, Ulcerative Colitis

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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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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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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Key Takeaways from Crohn’s & Colitis Congress 2023

February 24, 2023

The Crohn’s & Colitis Congress 2023 took place last month in Denver, Colorado, bringing together more than 1,300 healthcare professionals and researchers from across the globe to share the latest advancements in inflammatory bowel disease (IBD). To summarize some of my key takeaways: **Goal is to improve patient care by halting progression of disease** So, own your Crohn’s, own your ulcerative colitis, and stay abreast of the latest and greatest research in the IBD space to advocate for your own best care! To read more about Crohn’s & Colitis Congress 2023, please visit the full blog post on the Crohn’s & Colitis Foundation’s IBDVisible Blog. As a patient advocate myself, I…

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

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Written by Tanya Manohar My name is Tanya, and I live in Chennai, India. I was diagnosed with Crohn’s disease in 1999, a time when little was known about IBD in India. This means that I have segments of intestinal narrowing and scarring throughout my small intestine known as strictures caued by Crohn’s. I had one small bowel resection in 2009. A treatment regimen, comprising Azathioprine and Mesalamine, was the cocktail my Gastroenterologist Dr. Ashok Chacko prescribed to treat my Crohn’s. In combination with a restricted and closely monitored low-fiber diet, this regimen has kept me fairly stable. It has allowed me to live alone in a foreign country, pursue…

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My Feature in Gastroenterology & Endoscopy News!

August 1, 2022

Very honored to have been featured in Gastro & Endo News with regard to addressing sleep issues in IBD. This is something I’ve struggled with for a long time because I often need to use the facilities overnight and have trouble falling back asleep. Learn more about sleep issues and how to help us patients by visiting the article link here: https://www.gastroendonews.com/Article/PrintArticle?ArticleId=67175 As patients, sleep can really make a difference in our care and our overall ability to take each day as it comes. If our gastroenterologists aren’t able to address sleep concerns during our appointments, it may be best to bring up to our IBD nurses, NPs or PAs to…

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