How do your pets help you with your IBD? I speak to Meredith Mangold, “The Bowel Battling Badass,” about the role her dogs have played in her life. She became seriously ill with ulcerative colitis, which progressed into a rare complication called toxic megacolon. As her journey with IBD progressed, she eventually needed colectomy surgery, and has since been diagnosed with other immune-mediated conditions. Her two dogs, however, have become a big part of her advocacy work and they help her manage the pain and loneliness that come with chronic illness.Continue reading
This is the second part of my conversation with Kathleen Nicholls, author of “Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s Disease” and “My Flare Lady: A Handbook for Today’s (Diseased) Dame.” Hear the first part in Episode 97, where Kathleen tells us about her Crohn’s disease diagnosis and how blogging became the way she process her disease journey.
We talk about how to answer when people ask us how we’re doing. Which leads to another topic, and that’s how providers can ask patients about whether or not they want to pursue parenthood. Kathleen also gives blogging tips, including a hard truth, and offers advice to anyone who is newly diagnosed. However, I think her wisdom is important for long-term patients as well.Continue reading
Life with inflammatory bowel disease (IBD) brings challenges and many life changes but it can also sometimes bring unexpected opportunities.
Kathleen Nicholls, author of “Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s Disease” and “My Flare Lady: a handbook for today’s (diseased) dame” was diagnosed with Crohn’s disease in her 20s. She started a blog as a way to process her disease journey. She was stunned when people started reading it and when publishers became interested. Two books later, she shares the lessons she learned along the way.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
Telling your Crohn’s disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects.
Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, “COVID-19 Vaccination With UC Patient Rosanne Mottola.” She gives her experience on her second dose, how it affected her, and what her family’s plans are now that she’s vaccinated.
Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don’t actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It’s an important part of the disease journey, especially for those who tell their story publicly, that doesn’t often get discussed.Continue reading