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Discussion Starter · #1 ·
The other night someone posted a pamplet that gave a list of things to help people understand our IBS symptoms/habits. I meant to print it then, but got a phone call, and never made it back to the computer. I haven't been able to find it again. Please help! It's great tactical info!
 

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Here tis. It's in a post from Patti Ann2 with subject "What Isn't IBS" but I figured I might just as well cut and paste it for you:WHAT ISN'T IBSWhen my doctor informed me that I had IBS I thought all my problems wereover. At last! There was an actual reason why I was experiencing all thosemiserable symptoms. Symptoms that ranged from inconveniencing toincapacitating. Symptoms that didn't follow any rules and could pop up at anytime 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. Letthe curing begin!Then I asked my doctor what IBS was. He told me it stood for Irritable BowerSyndrome. "How exciting", I said. "And what is that exactly?"He shrugged. "We're not sure, exactly. But since we can't figure out what'swrong with you, that's what you have." Now I'm a reasonably intelligent person (plus I'd just had my coffee so mybrain was peaking for the day) so I had a reasonably obvious thought, "If theycan'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 whoare experiencing symptoms, usually chronic, with their gastro-intestinalsystem that are not being caused by a known GI condition or disease. A largepercentage of people who suffer from IBS have found that they can't cure it, ormake it go away. The best they can do is make changes, through trial anderror, in their diets and lifestyle to tone down the symptoms as much aspossible.Now, you're probably thinking, "Ooooh, I want to hear the details of thosesymptoms about a much as I want to hear my mother describe going intolabor with me." Relax. We want to tell you the details of our symptoms aboutas much as we want to hear your mother describe going into labor with you.This brochure is not about IBS symptoms, it's about how living with thesesymptoms impacts a person's life. Besides, there isn't enough room in this brochure. Two people who have bothbeen diagnosed with IBS could be experiencing symptoms that are exactlythe opposite from each other. One of them might only be able to eat certaintypes of foods that, if the other person ate them, would trigger a severe IBSattack. One of the frustrations and dangers of having IBS is that whenever youget advice, there's a real chance that it could be bad advice for you. IBS is nota true diagnosis, it's a catch-all term the medical community uses whenthey've ruled out everything else. And it really should stand for, "I'm BasicallyStumped".WHAT THIS BROCHURE ISOne thing that most IBS sufferers have in common is that it's hard tocommunicate to the people in their life about what it's like to live with IBS.There are several reasons for this. First of all, talking about problems with yourGI system is socially taboo. I mean, yuck! It's a topic you'd associate with aninfantile comedy routine, not with a conversation between two coworkers, ortwo people out on a first date. Secondly, like many chronic conditions, itchanges how a person gets through their day. It makes simple daily routines,like going to the bathroom, or ordering food, complicated and difficult. Anddifferent. And when your day is different from everyone's around you, it can bevery isolating and hard to explain. Unfortunately, people with IBS often find that they have to explain over andover again. In restaurants, in the office, on trips, and at home. Because eventhough 20% of the population suffer from some form of GI difficulty, the other80% have a mental block about believing that it's really real. Or that it's reallyas bad as people say; that there's a genuine difference between having a 'badstomach' for a few days and having a chronic condition that effects your wholelife.THE TOP 5 LIST This brochure was put together with feedback from an IBS Self Help Groupwebsite. A question was posted on the bulletin board, "What are the top 5things you wish people who didn't have IBS could understand".The following list has more than 5 items, but many people listed similar thingsand agreed with what other people posted. Now, as you read this list please keep in mind, whoever gave you thisbrochure didn't do it to accuse you of everything on this list. They gave youthis brochure to communicate with you the day to day issues of living withIBS. It's an EMBARRASSING condition to describe, and it's a difficult lifestyle toexplain. This brochure is a way of helping you to help whoever gave you thisbrochure find ways to live as normal and uncomplicated lifestyle as possible.To not let IBS run their life, or ruin it. 1) IBS IS A HIGH MAINTENANCE CONDITION. You can't simply take a pilland make it go away. And it takes a constant effort to keep it from gettingworse. Things like questioning a waiter about the ingredients of of every dishor always checking to make sure there is a bathroom nearby may seem likean inconvenience. But they're nothing compared to the inconvenience oftriggering an IBS attack because you ate the wrong food, or not being able toget to a bathroom in time. 2) IBS IS NOT TEMPORARY. It's not something you get over in a few days oreven weeks. You may never get over it.3) I'M NOT A PICKY EATER, I JUST DON'T WANT TO GET SICK. Pleasedon't push me to eat foods I have already said "no thanks" to. I know what mystomach can and can't handle. 4) WHEN I'M HAVING AN ATTACK, I NEED SPACE. Please give me myspace 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 IBSsymptoms toned down may suddenly stop working. New symptoms oftenappear out of nowhere. Foods that didn't bother a person with IBS for yearscould suddenly trigger a vicious attack. One of the reasons IBS is so difficultto explain is that it keeps changing.6) I'M NOT USING IBS AS AN EXCUSE NOT TO DO THINGS. Making plansto go out can be really scary when the symptoms (and the rules) can changeat anytime. Please respect that there are times when I can't go out, even if Iwant to. And please don't look at me funny when I ask if the place we're goinghas a bathroom. Understand that this condition is completely unpredictable. Ifwe go out together, be prepared for me to run off at any moment to find abathroom.7) PEOPLE WITH IBS DON'T TALK ABOUT IT TOO MUCH. There is nothinga person with IBS would love more than to only have to explain their healthcondition, and their health needs, once and only once. Unfortunately, mostpeople don't get it the first time. Or they think it's just a temporary problemthat will go away by next time. And so IBS sufferers find themselves having tobring up the subject the next time. And the next time. 8) PEOPLE WITH IBS ARE NOT OBSESSED WITH THEIR BOWELS. Haveyou ever heard of an asthma sufferer who was trying to explain their conditionbeing called 'respiratory obsessed'? And you'd never hear of someonedescribing their heart condition being called, "cardiovascularly obsessed'. Butbecause our GI systems are such a taboo subject, people who try to explaintheir GI problems are labeled, 'Bowel obsessed'. And sometimes by their owndoctors! 9) IBS IS NOT CONTAGIOUS. I'm not going to make you sick. And if I'm in arelationship 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 thesymptoms. But the "all in my head" routine makes us feel like we're beingcalled crazy. Believe us, we're not crazy, we're just not feeling well.11) THERE ARE MANY IBS SYMPTOMS. Some not even related to sitting onthe toilet. And for many people with IBS, the symptoms are frequentlychanging. 12) DON'T TAKE MY CONDITION PERSONALLY. Just because I don't wantto go out doesn't mean I don't want to spend time with you. I can't always goplaces where there are no bathrooms, but maybe we could go someplace thatdoes.13) I CAN'T ALWAYS HELP BEING LATE. If I'm late, its not because I didn'tplan or didn't care, I just can't help it. If I'm not where I said I'd be when I wassupposed to, I might be around the corner in the bathroom, but trying to getthere.14) I CAN'T CONTROL HOW OFTEN I GET SICK. And if I wasn't putting in aconstant effort to keep my symptoms toned down, I would be getting sickeven more often. Please don't make me feel worse than I already do byaccusing me of 'Always being sick'.15) SOMETIMES, THE ONLY THING THAT HELPS IS SPACE. If I don't feellike being with anybody, that means *anybody*, not just you.16) IT'S NOT FUNNY WHEN YOU HAVE TO LIVE WITH IT EVERYDAY. Youknow, everyone should be able to laugh at themselves, but there is a limit. Toquote someone from the bulletin board: "If I hear another "spastic colon" joke Imay totally lose it!" Sometimes the best way to show a little compassion, to show a little tact.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 IBS, your understanding is very importantto them. When a person developes IBS, their body becomes a very difficult place to livein. By taking the time to understand IBS, you have helped to make theirenvironment an easier place to live in.
 
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Discussion Starter · #4 ·
To give credit where credit is due - this was taken from Jeff's bb - and written by Molly in January of this year. I read the original posting back in January and I believe she wrote this on her laptop while flying somewhere (just to give some background info!).Kathy
 
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