By Tina Aswani Omprakash Originally published in Everyday Health on January 8th, 2021 We open the new year with hope after a dreary year filled with ups and downs from the COVID-19 pandemic. As a woman with Crohn’s disease, a type of inflammatory bowel disease (IBD), I have been practicing every precaution recommended by my doctor, from masking up to practicing social distancing and avoiding crowded, indoor spaces. While I’m used to being home a lot as a result of surgeries related to my disease and regular flare-ups, the pandemic was doubly hard for me because I have been in remission, and in good health to go out and about.…
- Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, Minority Health, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Vaccinations
- Colorectal Surgery, coping with flares, Crohn's, J-Pouch, Kock Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Mara Living Her Best Life with a Kock Pouch in Germany
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…
- chronic pain, Colorectal Surgery, coping with flares, Crohn's, fatigue, Pelvic pain, Ulcerative Colitis
Pain and Fatigue in IBD: Provider and Patient Perspectives
Raise your hand if you’ve dealt with chronic pain and fatigue living with IBD. Pain and fatigue are two common complaints amongst Crohn’s & ulcerative colitis patients whether disease is active or in remission. And oftentimes, it’s the least addressed or acknowledged. Many of us patients live with different types of chronic pain from abdominal pain and cramping related to disease flare-ups to post-surgical pain and pelvic pain. Some of us also tend to have pain from extraintestinal manifestations including severe joint pain and pain from dermatological manifestations (erythema nodosum, pyoderma gangrenosum, etc.). And fatigue appears to be a staple living with IBD where even if we have relief from…
- colorectal cancer, Colorectal Surgery, Coronavirus, COVID-19, Crohn's, immunocompromised, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
Managing Ostomy Care in the Era of Covid-19
Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot these last several months. As a result, my stoma size has been changing every week or two. With that, I’ve suffered a lot of ostomy leaks but even more skin irritation. While I’ve worked with my ostomy nurse virtually the last couple months to get my skin issues under control, I keep thinking of my ostomate family online and how you all may be handling your ostomy care in…
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COVID-19 & IBD: GI Perspectives on Fall 2020 & Beyond
Given all the chatter about COVID-19 this upcoming fall season, I thought it best to inform ourselves as patients as to what to expect. Because rates of COVID infection are so variable across the U.S., I spoke to several leading gastroenterologists around the country to get their take on what they’re recommending to their IBD patients about vaccinations, medications, surgery in addition to attending social gatherings and returning to school and/or work. The 5 IBD specialists I spoke to are located in various parts of the country and include Dr. Jordan Axelrad (Adult GI at NYU Langone Medical Center), Dr. Sabina Ali (Pediatric GI at UCSF Benioff Children’s Hospital), Dr.…
- Ableism, advocacy, Coronavirus, COVID-19, Crohn's, disability accommodations, Disability Justice, Gastroparesis, invisible illness, living with IBD, Mental Health, Ulcerative Colitis
University Accommodations in the COVID-19 Era
The last few weeks have felt daunting and overwhelming as I’ve been battling intense floods of illness and considering whether or not to resume graduate school part-time again this fall. You see, even contemplating a graduate program was a huge undertaking for me a couple years ago when I was accepted into a Certificate of Public Health program. As I slowly mustered up the courage to transfer into the Master’s in Public Health program, I felt scared yet hopeful all at once. And in between it all, I’ve had to take a trimester off to tend to my health. But all that aside, now we are in the midst of a…
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Pelvic Floor Dysfunction in IBD ~ A Live Discussion with the Crohn’s & Colitis Foundation
Pelvic pain is far more common in inflammatory bowel disease than often discussed or addressed. In a recent live discussion with Dr. Tayyaba Ahmed (pelvic pain physiatrist at Pelvic Rehabilitation), Dr. Neilanjan Nandi (IBD specialist at Penn Medicine), Kara Mortifoglio, DPT (pelvic floor physical therapist at Solstice Physiotherapy) and me in conjunction with the Crohn’s & Colitis Foundation, we discuss the various ways in which pelvic pain manifests in IBD patients. Given that pelvic pain is often confused with IBD symptoms and flare-ups, we discuss symptoms and how to get help to alleviate this pain and achieve greater quality of life. Please check out the video below to learn more:…
- advocacy, awareness, Black Lives Matter, coping with flares, Crohn's, Disability Justice, Healthcare Disparities, Minority Health, Ostomy, Ulcerative Colitis
Black Lives Matter in the IBD Community, Too
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options. With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard…
- Ableism, acceptance, advocacy, Crohn's, Dating & Relationships, Disability Justice, Minority Health, stigma, Ulcerative Colitis
I am NOT a Burden: A South Asian Perspective
The recent advice column in the NY Times called “Is it OK to Dump Him Because of His Medical Condition?” has been percolating in our minds for the last few weeks. Tomorrow, July 2nd, 2020, marks 10 years since I’ve been married to the love of my life, Anand. Yes, you read that right: one whole decade of wedded bliss and 14 years of us being together. (See Love Knows No Disability.) I still vividly remember telling him 3 weeks into us dating that I had been diagnosed with inflammatory bowel disease (IBD) a few short months earlier and that the disease had taken the lives of my father and…
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What I Learned From Joining a Clinical Trial for Crohn’s
By Tina Aswani Omprakash, Medically reviewed by Jenny Blair, MD Originally published on the Oshi Health website on April 6th, 2020: http://www.oshihealth.com/joining-clinical-trial/ My journey with Crohn’s disease has been an arduous one, laden with difficult decisions, including whether to take strong medications and when to have life-altering surgeries. At one point, Crohn’s derailed my career, my prospects of finishing graduate school and my ability to pursue meaningful relationships. But I was scared to try any new medication, let alone partake in a clinical trial. I was young and didn’t want to be burdened by a strict drug regimen or potential side effects. After I had more than 20 corrective surgeries…