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…
- autoimmune disease, chronic illness, Crohn's, living with IBD, medical trauma, Mental Health, Mindfulness, Ostomy, PTSD, stigma, Ulcerative Colitis
- autoimmune disease, chronic illness, Crohn's, Emerging Therapies, living with IBD, Ulcerative Colitis
What I’ve Learned About Starting an Advanced Therapy for Crohn’s Disease
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…
- acceptance, advocacy, autoimmune disease, awareness, coping with flares, Crohn's, immunocompromised, living with IBD, Mental Health, Mindfulness
Accepting My Crohn’s Disease to Finally Become Me
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
- autoimmune disease, Crohn's, Diet, invisible illness, living with IBD, Mental Health, Minority Health, Nutrition, Ostomy, Ulcerative Colitis
Key Takeaways from Crohn’s & Colitis Congress 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…
- advocacy, affordable drug pricing, autoimmune disease, awareness, chronic illness, drug pricing, health insurance, pharmacy benefit manager
A Direct-to-Patient Model: How Online Pharmacy Marley Drug is Revolutionizing Drug Pricing
Sponsored by Medicure’s Marley Drug. All thoughts & opinions are my own. As patients, have you ever wondered if forgoing health insurance could perhaps save us money on prescription drugs? I honestly hadn’t considered it and this concept blew my mind when I first heard about it. For me, it always seemed like a no-brainer: go through my insurance policy to get access to prescription medications so I can contribute towards deductibles and meet my out-of-pocket costs many months later. But that can take forever and cost quite a lot of money…The reality is we might not have to do that and it might sometimes save us money to bypass insurance. I…
- advocacy, autoimmune disease, coping with flares, Crohn's, IgG4, immunocompromised, living with IBD, Mental Health, Minority Health, Sjogren's
When Diagnoses Accumulate: My Sjögren’s Story
April marks Sjögren’s Syndrome Awareness Month, so I thought it was high time I shared my Sjögren’s diagnosis journey now that I’m finally getting answers and treatment to deal with a condition that has been plaguing me for years. It all started in November after my laparotomy surgery. The gastroenterologist presiding over my care in Pittsburgh had noticed how much Restatis (cyclosporine for the eyes) and other eye drops I was using for dry eye and observed how often I was needing ice chips for dry mouth while I was NPO from the obstructions, the surgery and the post-op ileus. The skin on my arms and legs was also flaking…
- advocacy, autoimmune disease, COVID-19, Crohn's, immunocompromised, living with IBD, Ulcerative Colitis
Dropping Mask Mandates: A Time of Anxiety or Joy?
Last week I went back to school in-person for the first time in 2 years. There was a part of me that was excited, yes, but the other part of me was nervous as all heck. Meeting professors and students I had gotten to know virtually over the semesters felt like there was a human connection again outside of Zoom! And I have to admit that I really enjoyed going to class and being around like-minded people before this pandemic started. It was definitely a loss to go virtual but at the same time, going virtual meant people with disabilities like us could take care of our health while being…
- autoimmune disease, Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Ulcerative Colitis, Vaccinations
What the IBD Community Needs to Know About Getting a COVID-19 Booster
Patient advocate Tina Aswani Omprakash spoke with gastro experts to get the booster answers for people with inflammatory bowel disease. Originally published in Everyday Health on December 1st, 2021 By Tina Aswani Omprakash For Health Answers Medically Reviewed by Kareem Sassi, MD Reviewed: December 1, 2021 Now that many of us with inflammatory bowel disease (IBD) are several months out from receiving two doses of the mRNA COVID-19 vaccines, the Centers for Disease Control and Prevention (CDC) has approved a booster dose of an mRNA COVID-19 vaccine for all adults 18 and up who received a second dose of the Pfizer or Moderna vaccine at least six months ago or the single-dose Johnson & Johnson vaccine…
- advocacy, autoimmune disease, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ulcerative Colitis
A Gutsy Feeling: Advocating for the Best Care Possible as IBD Patients
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…
- Asian American Pacific Islander Month, autoimmune disease, coping with flares, Cultural Stigma, diversity, living with IBD, Minority Health, Ulcerative Colitis, Women's Health
Demi’s Journey: Coming Out with Ulcerative Colitis as a Filipino Woman
I sat on the toilet for the tenth time that day, clueless about what was going on inside of me. For the past seven months, I had been experiencing episodes of bloody diarrhea and had yet to be diagnosed. My ass was spewing blood and I was worried that I am losing a lot of it. I thought to myself: if I were back home in the Philippines, I would probably hear someone say “Baka kinulam ka” (“Someone probably hexed you”). Filipinos, although predominantly Catholic, have their share of beliefs – both superstitious and supernatural. Kulam, a form of folk magic, is one of them. I turned 40 three months ago and…