We all have goals in life. Inflammatory bowel disease (IBD) can sometimes get in the way. It’s not ideal, but that’s the reality.
However, the goal of treatment should be to get us back to doing what we love to do, and minimize the effects of Crohn’s disease or ulcerative colitis on our lives. Our doctors also have goals for us. These goals might be different, but they’re all important in getting symptoms and inflammation minimized and living life on our terms again.
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.
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.
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.
Taking care of one’s teeth is important to anyone, but it is especially vital for people who live with an inflammatory bowel disease (IBD). We often say that Crohn’s disease, ulcerative colitis, and indeterminate colitis affect the whole person. The mouth is included in this, but we often short change ourselves where oral care is concerned. Mouth ulcers can be common in people with IBD. Cavities and infections of the gum and teeth may be more common in people with IBD. True Crohn’s disease of the mouth is less common, though it does occur. This all means that while most of us have lots of doctor’s appointments already, seeing a dentist is one that we need to keep on our list as well.
All of this is why, when my dentist office opened up, even while cases of COVID-19 were high in my area, I kept my appointment to get my teeth cleaned. A few weeks later, when the pediatric dentist opened up, I took my kids for their appointments. Here’s why I went and what to expect when visiting the dentist in the era of corona.
Ostomy surgery can improve quality of life for people with IBD but it is still not discussed often enough, or early enough, in the disease process. This leaves patients to cope with the surgery and the acceptance of an ostomy during a time when they are already critically ill. For Austin Powers, who goes by The Ostomy Guy, he exhausted all his possibilities to treat complications from Crohn’s disease before having surgery to place an ostomy. It was several more years before a quick encounter with another ostomate set him on the journey of acceptance. Today, Austin runs a podcast and has written a book about his experiences, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.
Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn’t mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn’s disease. She’s an ostomate, but she’s also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn’s disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn’t know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie’s advocacy in the ostomy community touched one family and gave them hope.
People with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis) are understandably concerned about the novel coronavirus, and the disease it causes, COVID-19, spreading in their community. People who have certain medical conditions and/or are receiving immunosuppressive medications may be at a greater risk of complications for COVID-19. There are some guidelines put out specifically for people with IBD that can help in making decisions during this time. On this page you will find trusted and verifiable resources that help you as you make choices regarding travel, medications, and everyday life during the pandemic.
Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn’s disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn’s in order to share what she’s learned with the IBD community.