Colorectal Surgery – 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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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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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 IBD Insider 2022: Patient Updates from the Crohn’s & Colitis Congress®

February 16, 2022

Originally Published by the Crohn’s & Colitis Foundation on their IBDVisible Blog on February 14th, 2022 By: Tina Aswani Omprakash The third annual IBD Insider was, as always, a great culmination of the events from the 2022 Crohn’s & Colitis Congress®. As patients, we often have many questions about what goes on at these medical conferences and how to understand the research in bite-sized, digestible pieces (yes, pun intended). IBD Insider does just that by bringing to us the newest research updates in IBD for us to stay abreast of the latest and greatest, but also to enable us to make the best shared decisions with our physicians in our care. The…

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Real Talk About Recovery

December 16, 2021

Recovery…it’s not something we talk about enough. Surgery, like the classic Bollywood love story, takes precedence but the moment the couple gets together, they live happily ever and we never hear about the rest. Same thing with the rush and excitement of surgery. We hear all about it but the reality is we never hear about how arduous the recovery is. Today marked a month since my surgery. It was quite an emotional day for me. For those of you just tuning in, I had an emergency laparotomy due to multiple bowel obstructions from previous surgical stapling and complications caused by scar tissue and a hernia strangulating my bowel and…

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Saravanan’s Exercise Tips as a Crohnie & Ostomate

September 30, 2021

As an ostomate and IBD patient, many people often ask me if I am able to play sports. I tell them ‘YES’. Yes, we can actively participate in sport activities, but there may be some restrictions. For example, Larry Nance Jr. is an NBA star who has Crohn’s disease (CD). But his illness does not prevent him from staying active. Although I am not a professional athlete, I do play sports for fun with my friends and it helps my physical and emotional well-being. However, as an ostomate and CD fighter, I have to take extra precautions while being physically active. I used to play football, badminton and volleyball before…

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A Gutsy Feeling: Advocating for the Best Care Possible as IBD Patients

September 18, 2021

By Tina Aswani Omprakash **Supported by agutsyfeeling.org, a collaboration between Girls With Guts, Purdue University, College of Pharmacy, and the Academy for Continued Healthcare Learning** In today’s day and age, there are many treatment options for inflammatory bowel disease (IBD – ulcerative colitis and Crohn’s disease). But given all the new medications on the horizon, how do we as patients participate in shared decision making with our IBD specialists regarding which medication might be best for us? And how do we know when we have given the medication a fair enough shot and that it might be time to move on to the next treatment option? How do we know…

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Bachatera with a Bag: Theodora Shattering Ostomy Stigma Through Dance

April 27, 2021

Elegance, beauty, confidence, and rhythm: these are some words used to describe a female Latin dancer. Chemistry, passion, sensuality: these often come to mind when describing or watching a Latin dance couple. Each genre of dance comes with its own culture. Dance shoes, music and certain beats accompany each genre and of course, that exists within bachata, a form of dance I love to practice. Nationally and internationally, people congregate to study, perform and/or socially dance the bachata together and there is absolutely nothing quite like it! Being a bachatera (a female bachata dancer), and 50% of a bachata dance partnership with my husband Marcos, I am fortunate to experience…

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IBD Motherhood Unplugged: Womanhood Questioned by Crohn’s Disease

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

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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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