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.
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.
Contained below are mild spoilers for the Season 2, Episode 4 episode of Farscape, “Crackers Don’t Matter.”
In 1999, my husband and I came home to his parents house after a night out. We found my mother in law watching the Sci-Fi Channel, as she often did in those days. The show that was on was Farscape. It was everything that the other sci-fi shows of the era were not. It was intelligent, bright, messy, sexy, funny, and relatable. I immediately fell in love with it.
The premise of the show is that John Crichton, astronaut, is testing his ship, called a “module,” in low Earth orbit, when he’s catapulted out of the galaxy through a wormhole. He winds up in deep space, immediately pisses off a high-ranking military officer, falls in with some escaped prisoners, and is off on an adventure.
Oh, and there’s no way to get home because nobody knows where Earth is located.
Men face particular challenges when it comes to their health. Looking at health statistics in the United States, men are less likely to have health insurance than women. They’re also more likely to have high blood pressure, smoke, and drink alcohol. Men also see a doctor less often than women. There are a variety of reasons for these disparities but the end result is that men might face more health problems.
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.