Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases.
Inflammatory bowel disease (IBD) takes a toll on your health; not only on your digestive system but also on your entire body. However, that’s only part of the story: Crohn’s disease and ulcerative colitis also eat away at your professional and personal relationships, as well as your finances. IBD is expensive. Having outstanding medical bills can put significant stress into the life of someone with IBD. In some cases, medical debt can make it difficult to be seen by providers because it’s not possible to make an appointment or get a test until a bill is paid.
That’s why people in the chronic illness community are always on the lookout for ways to maximize costs or to use lower-cost services whenever possible. Unfortunately, it can take time and energy to find free or low-cost services; and people with IBD may not have these resources available to them, either. The resources found here can be used to help keep costs a little lower, while still accessing the services that people with IBD need. Continue reading
If you have the chance to speak on behalf of the inflammatory bowel diseases (IBD) community: would you take it? At first, volunteer and Crohn’s disease advocate Keri Flaccomio wondered if she had a right to attend a day on the hill event with the Crohn’s and Colitis Foundation and lobby in Washington DC on behalf of the IBD community. Her experiences while she was on the hill helped her to understand that not only did she have the right, but she also had a responsibility to tell her story — and the stories of others living with IBD. Learn how Keri made her hill meetings more effective and how they helped her to become empowered as an activist.
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What’s new in inflammatory bowel disease (IBD) treatments and what’s next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what’s new in IBD from the Crohn’s and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It’s a conversation about cutting edge research on Crohn’s disease and ulcerative colitis mixed with the practicality of using these treatments in the real world.
Every person that lives with Crohn’s disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (IBD) but also anyone who cares for those living with these diseases.
Living with Crohn’s disease or ulcerative colitis may have a significant affect on intimate relationships. The reasons for this are as individual as we are but can include pain, fatigue, medication side effects, and problems with body image. Kait Scalisi, an NYC-based sex educator who founded Passion by Kait, has devoted her professional life to helping women and couples learn to reconnect with themselves and their partner in order to enhance intimacy and reconnect with pleasure. Kait lives with Crohn’s disease and ankylosing spondylitis, and therefore has a deep understanding of how chronic conditions can affect intimate relationships (both with oneself and with a partner). Hear Kait’s Crohn’s disease journey and learn how she helps people find their way back to enjoying their spark, both in the bedroom and outside of it.
Many young people who are undergoing ileostomy surgery to treat Crohn’s disease or ulcerative colitis have never met another younger person with an ostomy. Gaylyn Henderson, founder of Gutless and Glamorous, wants to make sure that people living with inflammatory bowel disease (IBD) don’t experience the uncertainty and stigma that she encountered before her ostomy surgery. In between running a successful foundation and a support group for people with chronic illness, Gaylyn has also become a spokeswoman for people with an ostomy, proving that her ileostomy is not a barrier to success.
People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play. Tina Aswani Omprakash, who lives with Crohn’s disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn’s.
Inflammatory bowel disease (IBD) tends to run in families but it’s not as simple as being passed down from parent to child. It’s more complicated because of the number of genes that are involved and the fact that it’s the genes plus some “trigger” that starts the disease process. In fact, many people with IBD don’t have a family history of the disease. Even so, it’s worth digging into family history in order to learn if there’s more IBD or immune-mediated conditions in the family.
Dating can be challenging for anyone at any stage in life, but having IBD and/or other chronic conditions adds another level of difficulty that can be disconcerting. Angela Cohen was diagnosed with Crohn’s disease after her intestine perforated. Her long-term relationship ended not long after and she was thrust into the dating world. What she discovered while going on more than a few “first dates” was illuminating not only about how IBD and other autoimmune conditions are perceived by potential partners but also about herself and what she wants to get out of dating, as well as her life goals. Continue reading