Category Archives: Amber Says

Why You Can’t Trust “Dr Google”

This is what Dr Google gave me when I searched for “Crohn’s disease.” I made a few edits because I don’t quite think this information is up-to-date. If I were contracted to edit this, and receiving payment for my time, I would send it back with a complete rewrite and a suggestion that the author was not qualified to write on the topic.

Screen Shot

This is what searching Google for Crohn’s disease gives you. It doesn’t exactly inspire confidence, does it?

What’s Your Trust Setting?

Cooper: “TARS, what’s your honesty parameter?
TARS: “90%”
Cooper: “90%?”
TARS: “Absolute honesty isn’t always the most diplomatic, nor the safest, form of communication with emotional beings.”

Interstellar

Interstellar has become one of my favorite movies. Don’t let the science fiction part of it get in your way — it’s not about that. It’s about what it means to be human and how to distinguish between saving individuals and saving humanity as a species.

Having a chronic illness is rather like having a secret. How do you go about telling people of your illness? Do you tell them at all?

I saw a posting in a closed IBD group recently where a member was asking for help in how to request accomodations at work without having to get specific about health circumstances. Advice was offered on how to handle the situation discreetly, until another member demanded that the advice seeker should “tell the truth.” “Why would you lie?” the response continued.

Not revealing the whole truth is not the same thing as lying. I was concerned about the helpfulness of this exchange, and I failed to see how it was productive for anyone. I don’t believe any person has the right to question another person’s decision to not disclose a health situation. We don’t owe each other the truth. Continue reading

There Are No Pictures Of Me

Amber as a baby

Aww. I’m a baby. Why am I holding a football? No idea. This would have been mid-70s, as evidenced by the green velour couch. It was a super comfortable couch, let me tell you. Great for building forts, too.

At the risk of sounding aged and out-of-touch, daily life was much different when I was diagnosed and even 10 years later when I had my j-pouch surgeries. No smart phones. No Internet. No digital photos. Most people didn’t have computers. A lot of people didn’t own cameras.

This is why there are no pictures of me. There are no photos of me battling ulcerative colitis in my hospital bed. No photos of my stoma. My wasted, 89 pound body. The skin peeling off the bottom of my feet. The blood transfusion. The voluminous amounts of gelatin I ate when my body could tolerate nothing else. There are no images of these things. We didn’t take pictures of them, and truthfully I can’t even remember if I owned a camera, or if anyone in my family did. Continue reading

GoodBelly Smiles At Me Every Morning

Recently the folks at GoodBelly contacted me and asked me if I’d like to try some of their products. Of course I wanted to try it — I’d seen it in the grocery store and had just never gotten around to giving it a try. I told them I’d be happy to try GoodBelly and they sent me some of their products.

I thought I’d try them and see how they were. I try new products all the time, but I don’t write about them unless I like them. I was not so surprised to find that I liked GoodBelly myself, but I was a bit surprised at the reaction amongst my family and friends.

GoodBelly Plus

Look how cute this is! Isn’t that just what you need in the morning? And it tastes great, too!

Continue reading

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.”

Continue reading

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.

Continue reading

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