Join Date: Aug 2001
A Brochure that explains IBS to people who don't have IBS.
(Feel free to copy it, edit or change it to suit your own opinions, or just plain use it.)
1) WHAT ISN'T IBS
When my doctor informed me that I had Irritable Bowel Syndrome I thought all my problems were over.
At last! There was an actual reason why I was experiencing all those miserable symptoms. Symptoms that
ranged from inconveniencing to incapacitating. Symptoms that didn't follow any rules and could pop up at
any time of day to throw a monkey wrench in a plan, or ruin a social event. Well, all those icky medical
tests were worth it because the mystery was over. Let the curing begin!
Then I asked my doctor what IBS was. He told me it stood for Irritable Bowel Syndrome.
"How exciting", I said. "And what is that exactly?"
He shrugged. "We're not sure, exactly. But since we can't figure out what's wrong with you, that's what
Now I'm a reasonably intelligent person (plus I'd just had my coffee so my brain was peaking for the day)
so I had a reasonably obvious thought, "If they can't figure out what's wrong with me, how are they
gonna cure me?"
The answer was, unfortunately, they couldn't.
Irritable Bowel Syndrome is the catch-all diagnosis that is given to people who are experiencing
symptoms, usually chronic, with their gastro-intestinal system that are not being caused by a known GI
condition or disease. A large percentage of people who suffer from Irritable Bowel Syndrome have found
that they can't cure it, or make it go away. The best they can do is make changes, through trial and
error, in their diets and lifestyle to tone down the symptoms as much as possible.
Now, you're probably thinking, "Ooooh, I want to hear the details of those symptoms about a much as I
want to hear my mother describe going into labor with me." Relax. We want to tell you the details of our
symptoms about as much as we want to hear your mother describe going into labor with you. This
brochure is not about Irritable Bowel Syndrome symptoms, it's about how living with these symptoms
impacts a person's life.
Besides, there isn't enough room in this brochure. Two people who have both been diagnosed with
Irritable Bowel Syndrome could be experiencing symptoms that are exactly the opposite from each other.
One of them might only be able to eat certain types of foods that, if the other person ate them, would
trigger a severe Irritable Bowel Syndrome attack. One of the frustrations and dangers of having Irritable
Bowel Syndrome is that whenever you get advice, there's a real chance that it could be bad advice for
you. Irritable Bowel Syndrome is not a true diagnosis, it's a catch-all term the medical community uses
when they've ruled out everything else. And it really should stand for, "I'm Basically Stumped".
2) WHAT THIS BROCHURE IS
One thing that most Irritable Bowel Syndrome sufferers have in common is that it's hard to communicate
to the people in their life about what it's like to live with Irritable Bowel Syndrome. There are several
reasons for this. First of all, talking about problems with your GI system is socially taboo. I mean, yuck!
It's a topic you'd associate with an infantile comedy routine, not with a conversation between two
coworkers, or two people out on a first date. Secondly, like many chronic conditions, it changes how a
person gets through their day. It makes simple daily routines, like going to the bathroom, or ordering
food, complicated and difficult. And different. And when your day is different from everyone's around
you, it can be very isolating and hard to explain.
Unfortunately, people with Irritable Bowel Syndrome often find that they have to explain over and over
again. In restaurants, in the office, on trips, and at home. Because even though 20% of the population
suffer from some form of GI difficulty, the other 80% have a mental block about believing that it's really
real. Or that it's really as bad as people say; that there's a genuine difference between having a 'bad
stomach' for a few days and having a chronic condition that effects your whole life.
3)THE TOP 5 LIST
This brochure was put together with feedback from an Irritable Bowel Syndrome Self Help Group
website. A question was posted on the bulletin board, "What are the top 5 things you wish people who
didn't have Irritable Bowel Syndrome could understand"
The following list has more than 5 items, but many people listed similar things and agreed with what
other people posted.
Now, as you read this list please keep in mind, whoever gave you this brochure didn't do it to accuse you
of everything on this list. They gave you this brochure to communicate with you the day to day issues of
living with Irritable Bowel Syndrome. It's an embarrassing condition to describe, and it's a difficult
lifestyle to explain. This brochure is a way of helping you to help whoever gave you this brochure find
ways to live as normal and uncomplicated lifestyle as possible. To not let Irritable Bowel Syndrome run
their life, or ruin it.
1) IBS IS A HIGH MAINTENANCE CONDITION. You can't simply take a pill and make it go away. And it takesa constant effort to keep it from getting worse. Things like questioning a waiter about the ingredients of every dish or always checking to make sure there is a bathroom nearby may seem like an
inconvenience. But they're nothing compared to the inconvenience of triggering an IBS attack because
you ate the wrong food, or not being able to get to a bathroom in time.
2) IBS IS NOT TEMPORARY. It's not something you get over in a few days or even weeks. You may never get over it.
3) I'M NOT A PICKY EATER, I JUST DON'T WANT TO GET SICK. Please don't push me to eat foods I have already said "no thanks" to. I know what my stomach can and can't handle.
4) WHEN I'M HAVING AN ATTACK, I NEED SPACE. Please give me my space when I'm in the bathroom. I appreciate your concern, but you can't help, and your hovering just compounds my embarrassment.
5) THE RULES ARE ALWAYS CHANGING. And so are the symptoms. Medicines, or herbs, or a special diet that was helping to keep a person's Irritable Bowel Syndrome symptoms toned down may suddenly stop working. New symptoms often appear out of nowhere. Foods that didn't bother a person with IBS for
years could suddenly trigger a vicious attack. One of the reasons Irritable Bowel Syndrome is so difficult
to explain is that it keeps changing.
6) I'M NOT USING IBS AS AN EXCUSE NOT TO DO THINGS. Making plans to go out can be really scary when the symptoms (and the rules) can change at anytime. Please respect that there are times when I can't go out, even if I want to. And please don't look at me funny when I ask if the place we're going has a
bathroom. Understand that this condition is completely unpredictable. If we go out together, be prepared
for me to run off at any moment to find a bathroom.
7) PEOPLE WITH IBS DON'T TALK ABOUT IT TOO MUCH. There is nothing a person with Irritable Bowel Syndrome would love more than to only have to explain their health condition, and their health needs, once and only once. Unfortunately, most people don't get it the first time. Or they think it's just a
temporary problem that will go away by next time. And so Irritable Bowel Syndrome sufferers find
themselves having to bring up the subject the next time. And the next time.
8) PEOPLE WITH IBS ARE NOT OBSESSED WITH THEIR BOWELS. Have you ever heard of an asthma sufferer who was trying to explain their condition being called 'respiratory obsessed'? And you'd never hear of someone describing their heart condition being called, "cardiovascularly obsessed'. But because our GI systems are such a taboo subject, people who try to explain their GI problems are labeled, 'Bowel obsessed'. And sometimes by their own doctors!
9) IBS IS NOT CONTAGIOUS. I'm not going to make you sick. And if I'm in a relationship with you I still need you to hug me and love me.
10) IBS IS NOT 'ALL IN OUR HEADS'. It's true that stress can compound the symptoms. But the "all in my head" routine makes us feel like we're being called crazy. Believe us, we're not crazy, we're just not
11) THERE ARE MANY IBS SYMPTOMS. Some not even related to bathroom issues. And for many people with Irritable Bowel Syndrome, the symptoms are frequently changing.
12) DON'T TAKE MY CONDITION PERSONALLY. Just because I don't want to go out doesn't mean I don't want to spend time with you. I can't always go places where there are no bathrooms. Sometimes it's not even more than that. - it is making to the bathroom in time, and the pain issue - Not knowing when the pain will hit and the duration of the pain and also privacy.
13) I CAN'T ALWAYS HELP BEING LATE. If I'm late, its not because I didn't plan or didn't care, I just can't help it. If I'm not where I said I'd be when I was supposed to, I might be around the corner in the
bathroom, but trying to get there.
14) I CAN'T CONTROL HOW OFTEN I GET SICK. And if I wasn't putting in a constant effort to keep my symptoms toned down, I would be getting sick even more often. Please don't make me feel worse than I already do by accusing me of 'Always being sick'.
15) SOMETIMES, THE ONLY THING THAT HELPS IS SPACE. If I don't feel like being with anybody, that means *anybody*, not just you.
16) IT'S NOT FUNNY WHEN YOU HAVE TO LIVE WITH IT EVERYDAY. You know, everyone should be able to laugh at themselves, but there is a limit. To quote someone from the bulletin board: "If I hear another "spastic colon" joke I may totally lose it!" Sometimes the best way to show a little compassion, is to show a little tact.
4)THANKS FOR YOUR UNDERSTANDING
Thanks for taking the time to read this brochure and understand what it's like to live with Irritable Bowel
Syndrome. Whether you are a family member, friend, or coworker of someone with Irritable Bowel
Syndrome, your understanding is very important to them.
When a person develops Irritable Bowel Syndrome, their body becomes a very difficult place to live in.
By taking the time to understand Irritable Bowel Syndrome, you have helped to make their environment
an easier place to live in.
Entire Thread from Parkview Publishing.