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…
- chronic pain, Colorectal Surgery, coping with flares, Crohn's, fatigue, Pelvic pain, Ulcerative Colitis
- 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…
- Colorectal Surgery, Crohn's, Diet, living with IBD, Nutrition, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
IFFGD #DDHChat: Nutrition for the Ileostomy – The Dietitian & Patient Perspectives
The Diet & Digestive Health (#DDHChat) Twitter chat series with the International Foundation for Gastrointestinal Disorders (IFFGD), co-host Tina Aswani Omprakash and lead host dietitian Neha D. Shah, MPH, RD, CNSC, CHES. We are excited to help to educate patients, caregivers, and others about Nutrition for the Ileostomy: The Dietitian and Patient Perspective. Recap originally published by IFFGD on October 6th, 2020: https://www.iffgd.org/blog/october-2020-ddhchat-recap.html IFFGD – introductory tweets and remarks: The views and experiences shared by our participant are their own and do not reflect the official positions of IFFGD. Each patient is different. Always consult with your health care provider or a registered dietitian (RD) on a diet treatment plan…
- acceptance, advocacy, Black Lives Matter, Caregiving, coping with flares, Crohn's, health equity, Healthcare Disparities, living with IBD, Minority Health, Ulcerative Colitis
~ OYC Trailblazers ~ Amy & Terrell: Crohn-ically Ever After
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…
- advocacy, Crohn's, diversity, Gastroparesis, health equity, Healthcare Disparities, Healthcare Marketing, living with IBD, Patient Voice, Ulcerative Colitis, Women's Health
MM&M Transform Talks: Prioritizing the Patient Voice
I recently had the opportunity to work with the MM&M Transform conference on a panel discussion on Prioritizing the Patient Voice in anticipation of their conference on September 29th-30th. A panel of 3 of us patient advocates (Tonya Cherie Hegamin, Type 1 Diabetes; Teresa Johnson, Multiple Sclerosis & Heart Disease; and me, Crohn’s Disease & Gastroparesis) discussed why it’s so important to engage patients in healthcare discussions, from digital health to biotechnology and pharmaceuticals. At the forefront of our conversation was a topic near and dear to all 3 of us: diversity, inclusion and health equity as well as medical accessibility for patients of color like ourselves. Check out our…
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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…
- Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
How to Vacation (or Staycation) Safely During the Pandemic
**CAUTION: ONLY TRAVEL WITH THE ADVICE OF YOUR PHYSICIAN AND IF PANDEMIC NUMBERS ARE LOW IN YOUR AREA & THE LOCATION IN WHICH YOU ARE TRAVELING. PUBLIC HEALTH & WELFARE IS EVERYONE’S RIGHT & RESPONSIBILITY** Being chronically ill and immunocompromised is hard enough, add a pandemic into the mix, and it feels impossible to get out and do the things you love. Particularly for those of us who have spent so much time in hospital beds or at home recovering from disease flare-ups and/or surgeries, that when we feel well, we want to seize the day. Seizing that moment though has been next to impossible during the COVID-19 era. This…
- advocacy, Colorectal Surgery, Crohn's, fistula, Fistulizing Disease, J-Pouch, Mental Health, Minority Health, Ostomy, Self-image, stigma, Ulcerative Colitis, Women's Health
FitWitMD’s Live Discussion on Perianal Fistulizing Crohn’s Disease
A couple weeks ago, esteemed IBD specialist, Dr. Neilanjan Nandi (@fitwitmd) of Penn Medicine, hosted a live discussion with me on my experiences around Perianal Fistulizing Crohn’s Disease. We opened up the discussion to an international audience and allowed for a Q&A on this very deeply stigmatized topic that’s often not discussed or understood very well. To view the video, please watch here: I have been very open about my struggles with multiple fistulae in female parts. I have lived with 5 rectovaginal fistulae and 1 pelvic transphinteric fistula that was headed to break through at the site of my tailbone, nearly paralyzing me. To read more about my experiences,…
- 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…