I ate a pie.

Okay so a bad habit of mine (well, it's really two bad habits) is that I don't eat too much when I'm working a lot, and then once work subsides, I pig out. Now, "pigging out" for me would probably look like eating normal meals to a normal person. When the stress of a big work project is over, I "indulge" in "riskier" foods for me such as salad, fruit, and yes...pie.

I'm not a huge fan of cake. Cookies can be good. Pie is always OUTSTANDING. Yesterday I came home from a big work project craving pie like no other. I couldn't remember the last time I ate pie (a couple years ago?). I needed pie. Now.

Since a pie bought at a bakery or grocery store would likely send me into the bathroom for a week, I decided to be "responsible" and bake a pie that was more IBS-friendly. I do subscribe to the theory that IBS symptoms can be somewhat controlled through diet, so I have learned to make friendlier versions of many dishes and treats. I found a recipe that looked good, spent too much money on organic blueberries, and made myself a pie.

It was very good. The best part is that even though I've eaten almost the whole pie in less than 24 hours, I've had minimal GI distress. I can't tell you what a treat this is for me! For every 50 holiday dinners, special occasions, etc., I eat maybe 5 desserts, and 3 of those will make me sick.

Admittedly, conditions were perfect (at least helpful)...not too much work stress, a stable tummy to begin with, and I had already eaten relatively "safe" foods prior to the pie. But whatever, I ate a lot of pie! Point for GI Jane!

Writing this post has made me even hungrier for pie. I will post the recipe tomorrow as part of Foodie Friday!

Bathroom beautiful?

I've been toying with the idea recently of making my bathroom a nicer place to be. If I'm going to spend more time in there than the average person, I could at least suffer in a spa-like sanctuary. Candles? Fluffy towels? Mood lighting?!

(Yes, this is a bathroom. Image from homes-interior.com.)

I have always loved hotels. Cheap hotels are useful, moderate hotels can be nice, and upscale hotels have the BEST bathrooms! The few I've seen have been very large, and the toilet is positioned as far away from the bedroom as possible. Some have good ventilation systems that employ a rather loud fan, which is always a plus. I've always thought that there should be music in bathrooms to camouflage any embarrassing noises, but until that day, noisy fans can be very helpful!

 Check out this picture of a bathroom in the Hazleton Hotel in Toronto:

(Image from blog.mrandmrssmith.com.)

I love how sleek and modern it is, and you can see that the toilet is at the end of the bathroom, almost in its own little closet. Check me in!

However, money doesn't always buy you the best bathroom. I once saw a picture of a hotel that was SO fancy, the bathroom "doors" were slightly frosted glass! You could SEE inside the bathroom with the door shut!

But I digress. I have no eye for interior design, and my bathroom is small. I guess a candle and nice towels would be a start.

IBS and workplace performance

As we all know, IBS takes a toll on workplace productivity, no matter what kind of work you do. Anyone with a chronic illness is constantly wondering if it will interrupt their ability to work.

Do these thoughts resonate with you?

-What if I have an attack today?
-Will they notice if I go to the bathroom again?
-Ugh, I am really regretting what I had for dinner last night.
-How do I explain this to my boss?
-How will I get through this lunch/dinner meeting?
-I'll just not eat until after I give that presentation.
-I wish the bathrooms were more private.

It can be especially difficult for people whose careers have an element of "performance". Besides the obvious careers in entertainment/music/the arts, consider:

-teachers who must lecture and/or remain with students in a classroom for long periods of time
-healthcare professionals involved with important procedures (don't leave that operating room!)
-daycare workers who are responsible for supervising small children
-anyone in a business that requires presentations and meetings
-attorneys (not just trial lawyers)
-psychologists or any kind of therapist
-event planners who must be present at large functions
-pilots (I believe there are strict health requirements; I wonder if they are tested for IBS!)

...and the list goes on!

I bet when you were little and wanted to be a ballerina/firefighter/astronaut, you didn't factor IBS into your plans.

The debilitating nature of IBS can, at the least, cause anxiety in the workplace and, at the most, cause people to switch careers or take a leave of absence. My own thoughts about my career regularly range from "I just can't do this anymore" to "Screw IBS! I won't let this ruin my work!"

Today is a "Screw IBS!" kind of day.

Telling your significant other about IBS

Hello! I'm back after a lengthy hiatus. It's great to be back, y'all!

Telling my significant other about my IBS was one of the hardest things I've ever done, and believe me, that is saying a lot.

It was difficult mostly because I have always wanted to appear polished, accomplished, and in control. I especially wanted to appear that way to the most important people in my life, because I didn't want to scare them away. I didn't want to say, "Hey, you thought I was a pretty, smart girl but really I have an incredibly embarrassing disease that wreaks havoc on my body despite every effort I make to control it! I bet you find that very alluring!" Sound familiar?

And, let's face it, we are still living in an age where women are expected (or at least encouraged) to be beautiful, noiseless beings who magically emerge from the shower effortlessly gorgeous (but natural!) and whose bodies must never emit anything offensive whatsoever. Fans of the show "Sex and the City" may remember this episode:

at a yoga class
Carrie: I farted.
Samantha: Then move your mat away.
Carrie: Not now, I did it in front of Big [her boyfriend].
Samantha: Big mistake.
Carrie: You think? It wasn't a choice. I'm human. It happened.
Samantha: No, honey, you're a woman, and men don't like women to be human.

That's not some retro-chauvinist idea, folks; this episode is from 1998.

Fortunately, my significant other is a very caring, supportive person. He just listened. He asked for a little information. He always took care of me when I was sick, but now there is another dimension to his concern when I am ill.

At first, I regretted telling him. Dammit, I had let out my secret! There was no going back! Six years of elaborate smoke and mirrors down the drain!

But a few days later, and every day since, I have been relieved by my decision. As he and I got closer, the intricate web of excuses and explanations I crafted became harder and harder to design. And because he reacted so well to my IBS, I traded in tremendous anxiety for understanding and acceptance.

My hope is that each of you has someone in your life who knows about your IBS and supports and comforts you. Whether this person is a fellow IBS sufferer or someone with guts of steel, he/she has the potential to offer much-needed relief.

It's all in my head.

Some IBS patients have the unfortunate experience of being told that their disease is "all in their heads."

Before I get irate, let me guess why this explanation would occur to medical professionals.

The origins and treatment of IBS are unclear, so it's a scary disease for a doctor to deal with. The "all in your head" conclusion is a convenient one. Heck, there isn't even a real test for IBS; you get diagnosed with IBS after tests have ruled out everything else. The Unknown is terrifying to a person who is supposed to know a lot.

However, when faced with the statement "It's all in your head" (and I have been!), my response is:

-Um, I don't think so. Please read the research. Thanks.

-I really don't think so. Twenty-five million people are inventing the same symptoms for themselves? That arise from many of the same trigger foods and drinks? Hm.

-If by some chance it is all in my head, I really don't care! Please fix it anyway! Please tell me by what mental pathway I am creating this hell for myself and what I can do about it. The physical symptoms are still the same no matter where they come from.

The world is not flat. Just because we haven't acquired enough knowledge on a subject does not mean we should make up stories to explain it.

Write your representative now in 5 minutes or less! It's private.

An INCREDIBLY important bill is now on the desks of our representatives in Congress. The bill, HR 2239: Functional GI and Motility Disorders Research Enhancement Act, would:

-increase funding for functional GI disorders at the National Institutes of Health (NIH)
-expand public awareness of these diseases through health campaigns, etc.
-tell the FDA to accelerate treatments and drugs as soon as the science is viable
(if you want to read the text of the bill, go to http://www.opencongress.org/bill/112-h2239/text)

WOW!!!!

Here's what you do:
1) go to http://www.congress.org/register to set up an account (just email address, password, and ZIP)
2) wait 1 minute for an email to appear in your inbox
3) click on the link in that email and sign in
4) see your representatives listed on the left side of the page, click on "write this official"
5) write him or her an email using the easy form!

This process is PRIVATE. Your information will not be displayed anywhere on the web, and you won't get mail unless you choose to sign up for it. You can sign the letter with just a first name, or whatever you want.

Feel free to write your own letter, or copy and paste mine:


Dear [Name of Representative],

Thank you for your tireless efforts in Congress on behalf of me and my
fellow constituents!

Please support HR 2239: Functional GI and Motility Disorders Research
Enhancement Act. I have IBS, a debilitating disorder which interferes with my career and social life on a daily basis. I am only 30 years old, and while my mind is vibrant and longs to make a real contribution in this world, my body struggles constantly. *[personalize this last sentence or just leave it out]*

Of course I am not alone. Millions of Americans suffer from IBS, which costs our country BILLIONS of dollars in sick days and health care. Yet this disease and many other GI disorders are underfunded.

You are our voice. Please support the Functional GI and Motility Disorders Research Enhancement Act.

Sincerely,


[Your name]


Easy as pie! Happy Fourth of July!!


Thanks very much to IBS Impact for bringing this to my attention. Visit http://www.ibsimpact.com/.

An extraordinary silence

Why exactly are we, as IBS sufferers, silent? Why do we withdraw from people instead of sharing our burden with them? Why are we especially reluctant to confide in the most special people in our lives? Why do we put off going to see our doctor about this problem? Why do we use pseudonyms on IBS blogs and online community forums?!

Let me start out by examining what we could gain from breaking our silence. A few monumental achievements, both personal and global, come to mind:

1. We could GREATLY reduce our anxiety by knowing that people whom we trust support us.
2. We could identify fellow sufferers among our friends and relatives and experience the empathy we sorely need and deserve.
3. We could help and inspire others who are suffering silently to come forward, bringing relief and hope to others as well as ourselves.
4. By identifying ourselves in large numbers, we could eradicate the stigma of IBS.
5. As a large, concerned group of sufferers, we could get more research funding to find a cure.

I'm probably not telling you something new here. This is mostly common sense.

So what's the problem??? Why don't we speak up and get stuff DONE?

The problem with speaking up about IBS is the stigma referred to in #4. This cannot be underestimated. In a recent paper in the Quality of Life Research journal, scientists found that 27% of IBS sufferers "reported moderate to high levels of perceived stigma" (http://www.ncbi.nlm.nih.gov/pubmed/21424542?dopt=Abstract). That's a lot of stigma, and I'm sure that the percentage is much higher in the real world, when we include all the IBS patients that don't come forward to participate in scientific studies!!

As I see it, this stigma originates from 2 important sources.

The first source is the perceived correlation between IBS and mental disorders. IBS sufferers are known to experience anxiety and depression, among other psychological symptoms. Science has shown that OF COURSE there's a link between IBS and mental health because 80% of serotonin, a neurotransmitter critical to psychological well-being, is located in the gut! So obviously it's not our fault, or "all in our head," but the correlation between IBS and mental disorders is still there, and very real.

The issue here is that mental disorders by themselves carry a HUGE amount of stigma in today's society. Consider that up until recently, people with mental health problems were treated as outcasts and were housed in crude institutions. Now there are sophisticated psychotherapies, drugs, and treatment centers, but the stigma is still deeply felt. Just one week ago, there was an article in the New York Times about a famous psychotherapist who just recently "came out" as suffering from a mental disorder herself. She finally admitted to this at the age of 68, having been diagnosed at the age of 17! So the connection between the highly-stigmatized world of mental disorders and IBS makes it very difficult to wear "I have IBS" on your sleeve.

The other big problem, of course, is bowel movements. Poop. Is there ANY other bodily function that we would want to hide more than that?! Society is not a friend to poop. Poop is a source of humor for adolescent boys, but otherwise its discussion is not acceptable. You may have even seen someone peeing on the side of the road or at a urinal, but pooping is something that happens in locked closets. It's smelly, gross, hideous, un-ladylike, etc, etc.

SO. Given that we, as IBS sufferers, are presented with two enormous blocks of stigma attached to our disease (and probably more that I haven't thought of), how do we free ourselves from them?

How do we admit that our need for help has overcome our embarrassment? How do we get strong enough to say "Screw it!" and take action against this disease?

Because we really, really must.