Category Archives: Amber Says

The Dangers of “Too Much” Advocacy

Rope Bridge

The way forward looks treacherous. But we must work together to find our way across.
Image © Sean Kearney

I had a recent revelation as I was planning an event for a group I volunteer with for one of my children. I am a volunteer, as so many parents are, and I spend a fair amount of time working with other parents and within the community to plan fun and educational events for our kids. But I am beginning to wonder if this is the best use of my time and if it’s providing the best experience for my children. And then it hit me – my thoughts were directly related to advocacy for chronic illness. Continue reading

I Write About Bowel Disease. What Of It?

Every so often when I tell someone what I do (writing about digestive disease) I get some curious responses, usually with a barely restrained sneer. “Wow, is there really a need for that?” “How could that be something that you need to keep writing about?” “Is that something that people are interested in?”

Nice Poop

You bet I’ve said this. I’m glad to see a healthy poop from my offspring.

And my answers are: yes, yes, and yes.

My standard response is this: “If you have a digestive problem, you are going to be very glad that there is someone available to you who has studied the digestive system, and can help you.”

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Did Your Diet Give You IBD?

Vegetables

When my ulcerative colitis was at its worst, raw fruits and vegetables were not in the picture.
Image © Tanya Hall

Diet has become a major topic of discussion for many people in the Western world. Most of us are overweight. We develop diseases from being too heavy, and yet many people spend a lot of time and energy dieting or thinking about how to lose weight. Since getting a j-pouch, having 2 children, and turning 40, I find myself amongst those that have to pay close attention to diet in order to avoid gaining weight.

In the IBD community, diet is discussed a lot, but there is no real conclusion. People with IBD can be anywhere on the spectrum of “diet has no effect on my symptoms” to “diet is how I keep symptoms from coming back.” The biggest problem is that you don’t know where you fall on this spectrum until you try different diets. And there are so many to choose from: no milk, no carbs, no meat, no animal products, no cooked foods, no gluten. Which one, or which combination, will have benefit for you?

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Let’s Not Promote Crohn’s Porn

Bar Graph

Is this how we should compare our lives with IBD?
Image © Salman Ali Ehsan

Over the past few months I’ve seen a strange turn in social media, and not one that I’d like to see continue. There are many dedicated IBD advocates on Twitter and Facebook, most of whom are putting their personal stories front and center in order to bring more awareness about IBD. Being open and honest about something so personal as one’s health is courageous, and for the most part, we stand together to help the newly diagnosed and the uninitiated learn more about Crohn’s disease and ulcerative colitis.

However, there is something going on that disturbs me deeply: the “I’m sicker than you” game, or what I’ve come to call “Crohn’s porn.” Continue reading

To The Woman Employing The Courtesy Flush In The Next Stall

Women's Bathroom

I do enjoy a good bathroom. This fun women’s room entry is found at the M&M store in New York. (I also enjoy a good M&M. Or any M&M, really.)

I was using the so-called “courtesy flush” long before I knew it had a name. Flushing something particularly odorous quickly or flushing to mask the sound of flatulence are common reasons for the courtesy flush. You might use this tactic at a friend’s house or even at home, but most often it’s used in public bathrooms, especially those that are not well-trafficked.

Anyone who has inflammatory bowel disease (IBD) has used the courtesy flush. Maybe there are some who couldn’t care less what the person in the next stall hears or smells, but others feel some embarrassment.

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Can We Really Cure Ulcerative Colitis?

I don’t know how it happened, and maybe the origins are lost to the sands of time, but someone somewhere decided that a colectomy was a cure for ulcerative colitis. This idea made it into books and pamphlets for patients, and now is taken as canon by inflammatory bowel disease (IBD) advocacy groups. Recently, however, there’s been some pushback on this idea from patient advocates.

What Does This Word Mean, “Cure?”

Personally, I have never felt that “cure” was the correct word to use for the removal of the colon. For people with ulcerative colitis, removing the colon may signal the end of some symptoms, including inflammation, fever, diarrhea, and pain. Without a colon, there are several options available for the solution to the question of “how does one poop?” The most popular one is a j-pouch, whereby a pouch shaped like a “j” is created from the terminal ileum, and sewn onto the rectum. Continue reading