Category Archives: Amber Says

Can You Stop Your Medication? - An IBD Community Poll

Can You Stop Your Medication? – An IBD Community Poll

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Many inflammatory bowel disease (IBD) patients receive medication. Which drugs, in what dosage and their combination, is individualized.

Almost everyone would probably prefer to not take any medications at all. However, IBD is complicated to treat, and there is potential for serious complications with untreated Crohn’s disease or ulcerative colitis. 

Still, there are some patients who want to discontinue their IBD medications. And this might be a valid goal — if they can get into deep remission.

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About IBD - How You Can Choose Your Own Adventure

How You Can Choose Your Own Adventure

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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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About IBD Podcast Episode 125 - Amber's Year in Books 2022

About IBD Podcast Episode 125 – Amber’s 2022 Reading List

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What did you read over the past year? If you made a reading goal: did you hit it? The books I read this year ranged from self-help to true crime to science fiction. Hear more about some of the books I enjoyed in 2022 (and in the year after I was diagnosed with ulcerative colitis) and if you’ll want to pick them up for yourself.

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This is Not a Gift Guide

This Is Not A Gift Guide: An IBD Community Poll

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At the end of the year, we see the gift guides come out. There’s one for every type of person, usually focused on age and gender, but also based on hobbies or interests. Or, even, based on chronic illness such as inflammatory bowel disease (IBD).

There’s no doubt, gift guides are helpful. For someone like me, who doesn’t go out shopping a lot, it’s useful to know what’s out there. Learning about the latest in cookware or video games can be helpful. To me, the funniest ones are the gift guides for teens or college students. Even I know they just want cash.

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About IBD - Travel With a J-Pouch

Travel With a J-Pouch

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Having surgery for ulcerative colitis comes with a lot of unknowns. J-pouch surgery in particular causes worry, which is understandable. However, it’s important to know that most of the time, this surgery is successful and people go on to live well.

Having j-pouch surgery for me has meant I am able to do a lot of things that I could never have done with ulcerative colitis. That includes hiking, camping, and white water rafting. Part of these types of trips include time without running water or a flushing toilet. And a day out on a raft in the water means no bathroom access at all.

I realized that some people may think outdoor activities aren’t a reality after surgery. But they’re absolutely possible, as well as many more adventures. For that reason, I thought I’d lay out how I plan before going on outdoor activities.

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About IBD - Hearing Isn't Listening

Hearing Isn’t Listening

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“Let me know if you need anything!”

“You can call me anytime!”

Content warning: mental health, trauma, gaslighting, violence.

You’ve probably said something like this: I know I have. You’ve also probably been on the receiving end of it as well. But are you truly prepared to help someone who is experiencing a crisis? If you’re the one in a crisis, would you really reach out for help, or accept the help that’s offered?

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About IBD - IBD Complicates Everything, Including Wedding Season

IBD Complicates Everything, Including Wedding Season

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Being in a wedding party is a difficult time when you’re diagnosed young with inflammatory bowel disease (IBD). While it is an honor to be asked to participate, for me, it came with the challenges of being fitted for a dress while living with severe ulcerative colitis.

When I was in my early 20s, like many women, I was a frequent bridesmaid. In some cases, this meant being fitted for a dress that was picked out by the bride. All the women in the wedding party would order the same dress, in the proper size, and have it altered, if necessary.

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About IBD - This Is My Superpower

This Is My Superpower

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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.

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Alien: How IBD Inspired an Iconic Movie

Alien: How IBD Inspired an Iconic Movie

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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.

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About IBD - The Power In Your IBD Story

The Power In Your IBD Story

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When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.

I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.

It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.

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