The patient advocacy space is lacking the voices of men and especially men of color. The result is that the IBD community is not diverse enough to provide the kind of support that they need.
Jordan McConnell, the founder of Crohn’s Veteran, is looking to change the dynamics of the online IBD space. Jordan served in the military and was eventually discharged due to his Crohn’s disease. It was a shock and changed his career plans unexpectedly. His disease journey showed him that he needed to be the change and he developed his podcast and his brand to support men and the larger IBD community.
What is the next innovation in the treatment of inflammatory bowel disease (IBD)? Is it the microbiome? Stem cells? Or, is it the emerging field of bioelectric medicine?
IBD is a complicated disease to treat and can bring complications and other, related conditions. The problem is the immune-mediated nature of the disease and how it affects the entire body. For Kelly Owens, who lives with Crohn’s disease, bioelectric medicine has bumped her into remission and changed her life in several ways. Today she goes by “Vagus Nerve Girl” because she had a device implanted in her chest that stimulates her vagus nerve. For her, this treatment has been a resounding success.
Motherhood comes in all shapes and sizes. The intersection of inflammatory bowel disease (IBD) and motherhood is often left out of the discussion and single motherhood and IBD is pretty much ignored altogether. That’s why I asked my close friend and co-founder of IBDMoms, Brooke Abbott of The Crazy Creole Mommy Chronicles, to tell me about her challenges and her successes living with IBD, a j-pouch, and being a single mom of a young son.
It’s one thing to talk to your physicians about becoming pregnant when you live with ulcerative colitis or Crohn’s disease. But what about getting the benefit of experiences from the mothers who have been through a pregnancy, birth, and breastfeeding journey? Former news anchor and current blogger and Crohn’s patient Natalie Hayden gives her experiences with pregnancy and receiving biologics, as well as how she has participated in research during her pregnancies and the benefits it offers her family.
We used to be told that women with IBD couldn’t have children. We were also told people with IBD shouldn’t have children.
The truth is this: women with IBD get pregnant and have healthy pregnancies and babies. We have more evidence and guidance than ever before. Gastroenterologist Dr Jill Gaidos, Associate Professor of Medicine in the section of Digestive Diseases and the Director of Clinical Research for the Yale Inflammatory Bowel Diseases Program discusses the finer points of pregnancy and IBD. When to seek help for fertility, what medications should be continued in pregnancy, and the risk of passing on IBD to children.
Spoilers for Alien are included in this post. If you haven’t seen it, go watch it and come back. It was released in 1979, but I promise it holds up.
What any individual person takes from a piece of art is shaped by their views and experiences. Two people can read the same book, see the same movie, or view the same sculpture and take different inspiration from it. This can be true even when the intent of the artist is fairly clear, because we all view art through our own unique lens.
That being said: Alien is a horror movie. I’ll tell you why.
New Podcast Brings Attention to the Disparities Experienced by People of Diverse Backgrounds Who Live With Inflammatory Bowel Disease
Patients, healthcare providers bring attention to the rising incidence of Crohn’s disease, ulcerative colitis, across racial and ethnic groups
CONNECTICUT, Apr 5, 2021 — Inflammatory bowel disease (IBD, which includes Crohn’s disease, ulcerative colitis, and indeterminate colitis) affects people of all ethnic backgrounds.1 However, people from minority groups experience a disparity of care that can result in worse outcomes, including complications, lowered quality of life, and increased mortality.2
People who live with inflammatory bowel disease (IBD) have questions regarding COVID-19 vaccination and how it may be impacted by their disease or their medications. IBDologists recommend that people who live with Crohn’s disease or ulcerative colitis receive a vaccination for COVID-19. Check with your physicians on your individual circumstances but, in general, the advice is that the vaccines are safe and effective for people with IBD, and they are recommended.
Have you ever seen a person who lives with inflammatory bowel disease (IBD) in a movie or TV show? If so: was the depiction positive or negative?
My guest is actor, writer, and filmmaker Derek Mari. Derek lives with Crohn’s disease and his IBD journey inspired him to create a story that explores the way people cope with living with a chronic illness. He has already filmed a short film, entitled “Crohnie,” which was positively received at several film festivals (before the pandemic shut everything down).
Derek’s next project is a full-length feature film with a main character who lives with Crohn’s disease. Loosely autobiographical, it will examine the journey to acceptance of life with a chronic illness, and show how that life can be full and filled with success. Learn more about Derek and his Crohn’s story, as well as how you can get involved in the crowdfunding program to get this film made.
When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.
I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.
It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.