Tag Archives: support

Experiences Are Solitary but Learning Is Communal

There’s one question that I’ve been asked many times, and it’s one that I also ask others when I conduct interviews:

“What advice would you give to people who are newly diagnosed with Crohn’s disease or ulcerative colitis?”

I see the importance of getting both new and veteran patients to give their experience with a new diagnosis of inflammatory bowel disease (IBD). It might be fair to say that most people, in hindsight, whether this is weeks or decades later, can point out where their journey could have been improved.

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Living with IBD: How Caitlin McGinnis, LCSW Supports Mental Health

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AIBD Podcast Episode 129

Caitlin McGinnis, LCSW was diagnosed with ulcerative colitis at the age of 22 and had her entire colon removed. This experience prompted her to become a social worker and specialize in providing mental health support for patients with various digestive health issues. Through her own experiences and connecting with support groups, Caitlin has learned the importance of creating communities, bringing awareness, and being a source of support for those going through similar struggles. She strives to provide her patients with the support she did not have when she was diagnosed.

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Who Is the Base of Your Pillar?

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In the spring of my junior year in high school, I met with my senior year Advanced Placement English teacher. I don’t remember much of that meeting, such as what we talked about, or even its purpose.

What I do remember is the store room she took me into.

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About IBD Podcast Episode 80 – Am I Forgiven?

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Do you worry that inflammatory bowel disease (IBD) will get in the way of finding a romantic partner? Crohn’s disease or ulcerative colitis can make dating challenging but they can also simplify it. It becomes clear pretty quickly if a potential partner is going to struggle to cope with chronic illness. This episode focuses on communication, as Amber and her husband, Mike, discuss how he reacted to his first introduction to ulcerative colitis and why it’s important to check in with your partner before discussing IBD outside of the relationship. After more than 20 years, they finally put an incident of miscommunication to bed, and Mike gives his tips on being a supportive partner.

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Summer of Activism: Navigating Your First Day on the Hill Meeting

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Patient advocacy groups often take part in “Day on the Hill” events. This is when an organization sends a group of people to Washington DC to meet with the offices of federal representatives. I’ve attended several hill day events over the past several years with different patient advocacy groups. At this point, I’m ready to let you know some of my tips and tricks so that when you’re ready to get started and do this work, you’ll be prepared.

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Summer of Activism: 10 Ways to Get Your Kids Involved in Advocacy

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We tend to think of politics as being for adults. But how do adults become engaged citizens who take part in their community? They start as children, learning from parents about the importance and benefit of volunteering, voting, and understanding the challenges and opportunities in their community. There’s so much that parents can do to raise children to be active community members. In addition, some of the many skills that are learned along the way, include public speaking, networking, teamwork, strategy, and communication. Continue reading →

About IBD Podcast 42 – I Just Said Yes

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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.

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About IBD Podcast 41 – You Have to Do What’s Best for You

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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.

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20 Years Later: The Matrix and My J-Pouch

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I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, only that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).

I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.

When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition; the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready for the journey.

(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)

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