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…
- acceptance, advocacy, chronic illness, chronic pain, Colorectal Surgery, coping with flares, Crohn's, endometriosis, extraintestinal manifestations, Irritable Bowel Syndrome, Mental Health, Pelvic Floor Dysfunction, Pelvic pain, PTSD, Ulcerative Colitis, Women's Health
- 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…
- Caregiving, Crohn's, Cultural Stigma, Family Planning, IBD Parenthood Project, invisible illness, living with IBD, Motherhood, Nutrition, Patient Voice, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Tanya’s Pregnancy Journey Living with Crohn’s Disease in India
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…
- 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…
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My Feature in Gastroenterology & Endoscopy News!
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…
- advocacy, awareness, Crohn's, J-Pouch, living with IBD, Ostomy, Traveling with IBD, Ulcerative Colitis
7 Tips for Traveling With IBD, From Someone Who Gets It
Don’t let inflammatory bowel disease and fears of COVID-19 get in the way of your travel plans. Here’s what you need to know before you start packing. By Tina Aswani-Omprakash Summers are a time to look forward to rest, relaxation, and vacations. But for those of us living with inflammatory bowel disease (IBD), going away on a trip can often mean additional anxiety. And with the addition of COVID-19, anxiety levels are heightened. While many of us want to travel, we struggle to wrap our heads around how to travel when living with Crohn’s disease or ulcerative colitis, especially as new variants of the novel coronavirus circulate around the world. In fact, stressing out over travel…
- Crohn's, Digital Healthcare Innovations, Disability Justice, invisible illness, Irritable Bowel Syndrome, J-Pouch, living with IBD, Ostomy, patient rights, Ulcerative Colitis
My Feature in The New York Times!
In conjunction with the Crohn’s & Colitis Foundation’s new We Can’t Wait App, nonprofit partner South Asian IBD Alliance’s Co-Founder & President Tina Aswani-Omprakash was interviewed and featured in the Metropolitan section of the Sunday’s edition of The New York Times on 19 June 2022!!! Read the article in-print below or online here: https://www.nytimes.com/2022/06/17/nyregion/public-bathrooms-nyc-tiktok.html Check out the We Can’t Wait App to find the restroom nearest to you in the U.S. Available now for download in Apple Store and Google Play: https://www.crohnscolitisfoundation.org/wecantwait
- Clinical Trials, Crohn's, Emerging Therapies, living with IBD, medical trauma, Mental Health, PTSD, Ulcerative Colitis
Research Highlights from Digestive Disease Week 2022 for the IBD Community
Originally Published by the Crohn’s & Colitis Foundation on their IBDVisible Blog on June 8th, 2022 By: Madhura Balasubramaniam & Tina Aswani-Omprakash After two years of virtual programming due to COVID-19, Digestive Disease Week® (DDW) 2022 came back with a bang in San Diego, CA last month. There was a lot of research presented about various gastrointestinal and liver conditions and it was exhilarating to see and hear about all the latest developments in the inflammatory bowel disease (IBD) space. From emerging therapies to better understanding of psychosocial aspects of IBD in addition to the role of antibiotics in IBD as well as growing up with pets and the development of IBD,…
- 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…