Category Archives: Amber Says

How Are We Defining a "Healthy Lifestyle"?

How Are We Defining a “Healthy Lifestyle”?

I keep seeing this term “healthy” being used in research papers and in discussion online. 

“Healthy individual,” “healthy lifestyle,” “healthy diet,” “healthy foods.” I don’t know what these phrases mean. There’s certainly not one definition for these ideas. 

Continue reading
About IBD - Unexpected Things to Buy With Your FSA

Unexpected Things to Buy With Your FSA

For some people with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis), yearly healthcare costs are exorbitant. This is true for myself, as there are yearly tests, check ups, and medications that insurance doesn’t fully cover.

For this reason, I’ve been using the Flexible Spending Account (FSA) program for many years. The FSA program is offered through an employer, similar to insurance plans. Every year, either as an individual or as a family, you decide on a dollar amount that will be automatically pulled from your paycheck and placed into a holding account.

Continue reading
Can You Stop Your Medication? - An IBD Community Poll

Can You Stop Your Medication? – An IBD Community Poll

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.

Continue reading
About IBD - How You Can Choose Your Own Adventure

How You Can Choose Your Own Adventure

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.

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

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

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.

Continue reading
This is Not a Gift Guide

This Is Not A Gift Guide: An IBD Community Poll

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.

Continue reading
About IBD - Travel With a J-Pouch

Travel With a J-Pouch

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.

Continue reading
About IBD - Hearing Isn't Listening

Hearing Isn’t Listening

“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?

Continue reading
About IBD - IBD Complicates Everything, Including Wedding Season

IBD Complicates Everything, Including Wedding Season

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.

Continue reading
About IBD - This Is My Superpower

This Is My Superpower

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.

Continue reading