My name is Amy Btiebet Washington, I’m 34 years old and live in Ohio. I was diagnosed with Crohn’s disease when I was 26 (in 2012). Initially, I thought I had a terrible flu, but after a few days of symptoms, I was rushed to the hospital with a 106-degree fever. I was immediately treated for sepsis, which led to 5 days in the ICU. After multiple tests, I was diagnosed with Crohn’s disease. The sepsis was a result of a severe infection caused by Crohn’s disease. At the time of my diagnosis, I knew very little about the disease and didn’t know anyone who lived with Crohn’s or ulcerative…
- acceptance, advocacy, Black Lives Matter, Caregiving, coping with flares, Crohn's, health equity, Healthcare Disparities, living with IBD, Minority Health, Ulcerative Colitis
- 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…
- acceptance, advocacy, coping with flares, Crohn's, fistula, Gastroparesis, invisible illness, living with IBD, Mental Health, Ostomy, PTSD, stigma, Ulcerative Colitis
Talking Gut Podcast Episode 20: Tina Aswani Omprakash on Resilience & GRITT
As May, a month of several health initiatives, comes to a close, I wanted to highlight Mental Health Awareness Month, World IBD Day and World Digestive Disease Day by talking about all three in my latest podcast interview with Dr. Jim Kantidakis, Clinical Psychologist & Gut-Directed Hypnotherapist, at the Gut Centre in Australia. In his podcast titled Talking Gut, I discuss the power of resilience, that so-called grit that living with Crohn’s Disease, multiple fistulae, a permanent ileostomy, gastroparesis, IBS and SIBO have given me over the years. Dr. Kantidakis asks me how I got through all my hospitalizations and faced all the medical PTSD and I would have to…
- acceptance, advocacy, Colorectal Surgery, coping with flares, Coronavirus, COVID-19, Crohn's, fistula, Fistulizing Disease, immunocompromised, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
~OYC TRAILBLAZERS~ Spotlight on Malaysian Crohnie & Ostomate Saravanan
It all started in early 2008 when I was still in high school and started to experience bowel disease symptoms. However, as many of us know, there can be a large gap between the time we experience symptoms and the time we are officially diagnosed. I was finally diagnosed with Crohn’s disease in July 2012. The four and half years in between onset of symptoms and diagnosis were the most arduous part of my journey. My battle began upon developing a fistula. For those who may not be familiar, a fistula is an abnormal tract created between the intestinal wall and another organ or out on to the skin due…
- advocacy, awareness, Biosimilars, Canadian healthcare, coping with flares, Crohn's, fistula, Forced Medical Switching, living with IBD, Lobbying, patient rights, Ulcerative Colitis, Women's Health
Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada
By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…
- Ableism, acceptance, Caregiving, coping with flares, Crohn's, Dating & Relationships, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
The Other Side of Crohn’s: Caregiving
By Anand Omprakash Originally published by the Crohn’s & Colitis Foundation on December 3rd, 2019: https://www.crohnscolitisfoundation.org/anands-story “Love is that condition in which the happiness of another person is essential to your own.” – Robert A Heinlein For anyone who has been in a loving relationship – romantic, familial, or other – I hope this quote resonates. Love truly is the condition in which another’s happiness is crucial to your own. In fact, that is the whole point of a loving relationship, is it not? This aspect of love very much applies to relationships in which we are not just partners, but also caregivers. A caregiver is one who takes on…
- Ableism, acceptance, advocacy, awareness, Body Positivity, colorectal cancer, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis
The Beauty of Ostomates Worldwide
Happy #OstomyOctober, everyone! After doing a piece about things we can do with an ostomy last year, it only seemed appropriate this year to highlight how diverse the population living with all types of ostomies is. Just to backtrack, many of you might be wondering what an ostomy is. According to the United Ostomy Associations of America (UOAA), “ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body.” There are generally three types of ostomies: (1) colostomy, (2) ileostomy and (3) urostomy. A colostomy takes a resected…
- acceptance, awareness, Body Positivity, Colorectal Surgery, coping with flares, Crohn's, Dating & Relationships, Egg-Freezing, J-Pouch, living with IBD, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC TRAILBLAZERS~ Katie’s Story: Baby-Making Prospects & Egg-Freezing with a J-Pouch
A Nursing Student Tells OYC Her J-Pouch Story and How That Led to Her Courageous Decision to Freeze Her Eggs to Someday Have Children. By Katie Gene Friedman When I was first diagnosed with ulcerative colitis in my senior year of college, my colitis responded to medication and didn’t take up much of my life. Consequently, I only disclosed my diagnosis to my then boyfriend, best friend, and immediate family. During a bad flare and particularly stressful semester in grad school studying social psychology, that group expanded to include the nucleus of my social circle and some professors. At that point, my disease affected what I was doing but not…
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When Diagnoses Accumulate: My Gastroparesis Story
As Gastroparesis Awareness Month is coming quickly to a close, I thought it high time to share my story. As many of you know, I was diagnosed in June with a form of digestive tract paralysis (DTP), specifically gastroparesis, via antroduodenal manometry and a gastric emptying study. And let me just say, this diagnosis was one of the toughest pills I’ve had to swallow in recent years. Not because I hadn’t known that some kind of DTP diagnosis was in the works but because I was blindsided by the resurgence of Crohn’s along with small bowel dysmotility on top of the gastroparesis. And it knocked me down and it wore…
- advocacy, awareness, Body Positivity, coping with flares, Crohn's, Diet, J-Pouch, living with IBD, Ostomy, Pelvic Floor Dysfunction, Self-image, Ulcerative Colitis, Women's Health
Weekend Long IBD Retreat Helped Me to Own My Crohn’s
Everyday Health blogger Tina Aswani Omprakash details her experience on a weekend-long retreat for women living with IBDs.