Episode 19 – Amber Answers the IBD Advocacy Tag Questions

Megan Johnson of The Front Butt YouTuber has presented 5 questions for people with IBD to answer and then tag someone else using #IBDAdvocacyTag. It’s a great way to get to know people in the community better and hear different perspectives. My answer to the form of IBD I have is not going to be what you expect and my socially awkward moment is pretty epic: I remember every detail about it, even though it happened almost two decades ago. And who did I tag? Well, I do that in my own way, too.
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A Meditation Journey – Week 1

Meditation Journey With About IBD

Most people find meditation to be helpful and a worthwhile undertaking. I do recommend that people try it, especially people who have IBD. But for me, however, it hasn’t been quite the experience I expected.

I recommend that people with chronic illness meditate. I even did a podcast with Dr Tiffany Taft, a behavioral psychologist, that focused heavily on getting started with meditation as a tool for stress relief.

But me? Yeah, I don’t meditate. Or, I didn’t.

I have my time when I’m running or walking, either outside or on my treadmill, that I consider my meditation time. It’s a moving meditation. That’s what I tell people. I get quite cranky if I get interrupted or if I don’t get that time. But it’s not really traditional meditation, and I know that.

The time came when my friend and colleague, Dr Barbara Bolen, had an offer for a free trial of a meditation app. So I asked her if I could have it, she graciously gave it to me, and I downloaded the app. This is my journey through the first week, having never done any formal meditation in the past.

This is not a typical meditation blog post, but read through to the end to fully understand the challenges that are specific to me. I’m still going to recommend that everyone try meditation. Continue reading

Episode 18 – You Have To Be Happy Within Yourself – With Brooke Abbott

Pregnancy and birth are different for women with IBD. There are not only challenges that come from the disease itself but the lack of awareness about IBD during pregnancy can lead to less than optimal treatment. Brooke Abbott of The Crazy Creole Mommy Chronicles describes how she coped with ulcerative colitis during her pregnancy and a birth that did not go as she’d hoped or as she’d expected. Learn how everything turned out in the end and find out what Brooke and Amber think pregnant women with IBD should do to prepare for birth and for those first few weeks with a new baby.

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When Your Body Image is Crap

Amber Prom

This is what prednisone did to me prior to my senior prom. It hurt to smile, my cheeks were so big.

Many people with inflammatory bowel disease (IBD) will admit to having a body image issue. The  research shows that people with IBD who have a healthy self-image are in the minority. And after all, how could we not have issues with our bodies? Our bodies fail us without warning, not to mention the symptoms of IBD which are often so distressing and personally upsetting to oneself and to others.

It’s funny, now as an “over 40,” I think back on the days when I was younger and I have to laugh at my skewed sense of self. The facts that support my internal monologue on body image will surely upset those who were closest to me when I was a child and a teen. We didn’t discuss things like body image in the 70s and 80s and there wasn’t anyone who told me the things I tell my daughter, that her body is strong and beautiful and that we will do our best to take care of it.

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Episode 17 – When IBD Gets Married With Jaime Weinstein

Getting married is a joyful time in one’s life. Until you have to bring your IBD along when you shop for your wedding dress, that is. Learn how Crohn’s disease affected Jaime’s perceptions about body image throughout her life and how it all culminated in a trip to a bridal shop that left her angry and frustrated. Plus, we share our best tips for making the dress shopping, and eventual wedding day dress wearing, go more smoothly if IBD decides to make make an appearance.

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Episode 16 – We Are Not Unique With Christy Stone of Crohnie Bologna

Are you unique? Do you represent most patients with IBD? Christy Stone of Crohnie Bologna tells the story of her disease journey, how she feels that she’s not unique as an inflammatory bowel disease patient, why she chooses kindness, and why these things make her a better advocate.

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About IBD Podcast 15 – 2017 Year End Wrap-Up

Welcome to the year-end wrap up show! I put together clips from my first 14 shows that drop the heaviest knowledge bombs about how life with IBD affects us, our careers, our relationships, and our stress levels.

Do you have an IBD Elevator Speech? I got you, here’s where you can learn to create yours after you listen to Brooke Abbott give hers: www.verywell.com/how-to-create-yo…r-speech-1942452

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About IBD Podcast 14 – We Are All Capable of More Than We Think With Brian Greenberg

What are your goals? Are you taking steps each day to move towards those goals? Brian Greenberg, endurance athlete and president of Chronically Better You, tells us how he moved from goals after surgery—getting out of bed and making his own lunch—to training for an Ironman in 2018. People with IBD know the value of structure and Brian explains how he has learned to manage his life with Crohn’s disease and an ostomy through careful planning and setting goals.
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Walking In Their Shoes, And In Mine

In Their Shoes

The avatar for the program is customizable (it looks like me, right?) and it changes based on the challenges. Feeling poorly (looking green), sweating (experiencing a sign or symptom), and blushing (feeling embarrassment) are all situations that are experienced during the simulation

Takeda Pharmaceutical Company contacted me and offered me the opportunity to participate in a program that they’d developed which simulates the experience of having inflammatory bowel disease (IBD). The program was being used internally to help Takeda employees understand IBD better and was now being rolled out to participants outside the company. IBD is an exceptionally isolating disease and research shows that it is associated with a high degree of stigma in the public perception. 

I was immediately intrigued with the prospect of this program: my first thought was that I couldn’t imagine what this might look like. My second thought was that it sounded like an innovation that could change how participants view IBD and impact their work as health care professionals, industry representatives, and legislators. The program is called “In Their Shoes,” and the full session takes 2 days, but I participated in an abbreviated, 3-hour variant.

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What Can’t You Do?

Monsters are real

Recently, during an interview, I was asked to talk about what I couldn’t do because of my IBD or my j-pouch. I may have visibly bristled at the question, though I tried to mask this initial negative reaction. I did think about how to formulate an answer–probably for a good solid minute. In the end, I couldn’t come up with anything.

The interviewer made a few suggestions, but they were things that I don’t dwell on, such as dietary restrictions. Having some dietary restrictions is not something I think about often. I can absolutely still eat all kinds of healthy food as well as not so healthy, yet tasty, food like chocolate, and also have a cocktail. I no longer see food as an obstacle or a problem, because I’ve worked out my diet and I pretty much stick with what I know at this point. Therefore, this is not something I ruminate about or concern myself with too much.

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