# Living with IBS isn't living



## Turtle0914 (Jul 31, 2007)

This is the first time I've posted anything and to be 100% honest I'm just so frustrated that I need to vent to someone or something. I'm 27 years old and was told I had IBS when I was 12 or 13...I've been "living with it" if you can call it that for way too long now. Of course there are some days that it never bothers me and then theres weeks/months where I'm constantly miserable. This is one of those weeks. I hate it! This horrible thing takes your life and turns it upside down. I've been scared my entire life of having a bad day so I don't do things I want to do, eat things i want to eat and miss out on so many fun things that I should be doing at my age, things all of my friends do but I can't because I never know when it's going to hit. The doctors say my case is towards the severe side. I get sick when I eat, sick when I don't eat, sick when I eat to much or eat too little.. it doesn't seem like theres ever a good day.I'm actually sitting at work now, on the verge of losing it and just breaking out in tears. Today was one of the few days I woke up in a good mood. I got a great nights sleep and woke up rested and ready to go that is until I decided to eat some breakfast. I've been miserable since then. Now I'm stuck in my office doubled over in pain and trying to make it to the bathroom without everyone in this small office noticing that I've already been there a dozen times in the 2 hours I've been here. I'm just frustrated and I guess borderline depressed. I feel like this demon in my gut has taken my life away from me. I can't go anywhere and I can't do anything without being scared of how my stomach will react. It really is draining for me. I feel so bad right now that I just want to go home, but as anyone with IBS knows you just can't do that. Anyone who has a normal stomach would be out of here or would have called in sick and the first twinge of pain or D but for me it's an everday occurance so I just have to deal with it because I obviously can't leave work everyday when it starts. They say a controled diet and exercise helps.. BS! nothing helps. eating the best food for you, high fiber low fat, and no taste doesn't help. Spending an hour on the treadmill doesn't help. Nothing helps. I honestly feel like I have a debalitating disease that makes life unbareable. The frustration of this for the past 14 years or so is exhasting.. I just want a normal life.


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## Patient (Jul 5, 2007)

Aw, I'm sorry you feel this way Turtle, but you're not the only one that does. Today was somewhat like that for me, except instead of being at the office I was visiting some of my boyfriend's family. Everyone was there, and it's a tiny house, so I had to grit my teeth and bear it. It was hard! Finally I got back home and bolted inside, barely making it to the bathroom in time. There's nothing that causes my IBS to act up more then stress. IBS is an excusable reason to leave work as frequently as you need without being punished for it though, if I remember correctly, have you spoken with your boss about it? It might be embarrassing, but it might take a lot of weight off your back. What has your doctor told you? Has he given you any medicines to try? Hopefully yours isn't one of the doctors that just brush off IBS patients, that's something else that's equally frustrating. If diet changes and exercise haven't worked for you though, maybe you can find some medicine that will at least help you a little bit. There's a TON of information about things that have worked for people on this forum, so you might just go through and do a bit of trial and error until you find something that does.On my work days I usually take a few Immodium and Pepto to keep my stomach in check, sometimes it helps, sometimes it doesn't. But, like I said, you're not the only one who's life has been effected severely by IBS. It's tough, really it is. I hate it when people just tell us it's all 'mental'. Like it's something we can control.







They just don't understand what it's like to live with it. Try to hang in there, eventually you'll find *something* that helps!Keep your chin up,Patient


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## Orangatami (Aug 1, 2007)

Turtle, I share your feelings of frustration. However, I don't believe that you simply "must live with it" the rest of your life. I think there comes a time when you have to embrace your challenges. Love what is. I suffer like you do day after day, and my frustration takes control of me. I talk to my mother every week or so and she reminds me of my many many blessings. Even though I'm sick everyday like you, I can move on in life, I work, I go to school, I do feel like I never get a chance to get out and have "fun" but yet I move forward.With that said, you are not alone in your perils and you must never compare yourself to anyone. Its funny because as I get a chance to know people, I find they to have IBS or Chronic Fatigue or are deaf or have cancer or cant move their feet or really anything that I would never expect. In a way, I'm grateful for my problems. _Grateful_. Wow that sounds weird.I don't know if this helped but its something I need to say for myself as a reminder. One last thing: I fully believe that diet control will alleviate most IBS problems. I've had to go completely off of milk products, spices, tomatoes, potatoes as well as gluten products to get some relief. My blood tests don't show that I'm allergic to any of these things but I can tell I can make it through the day better. Change your diet BIG time and see what happens. Its working for me!


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## Patient (Jul 5, 2007)

Here's the thread that I found describing the Family and Medical Leave Act, by the way. http://www.ibsgroup.org/forums/index.php?showtopic=89273


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## hasting06 (Aug 3, 2007)

I'm 18 and have had IBS for 3 years now. Throughout high school when I was supposed to be having fun and going out with friends all the time, I had to wait to tell them if I'd be able to hang out because I didn't know how my stomach would feel. People often mistake me for snobbish because I don't readily agree to go places with them. But it's never safe for me to just say yes, because you never know when it will be a bad day. I feel like I missed out on so much because I was afraid of what could happen. I understand how you feel, it's extremely difficult.


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## 19527 (Jan 27, 2007)

i feel for you, i am 24 and seem to be missing out on so much, i've only recently been told i have ibs but i have had the sympoms for years, the docs say that low carb diet lots of fiber, exersice( i'm over weight, but it seems inposible to do anything about it) they say to find out what my triggers are and avoid them but my triggers are anything mostly meant meat is pretty much always but but everything else is just some ttimes sometimes i can have dairy some times fuit and vegges get me, some times exercise make me feel soo much better some times it make me have so much pain, i miss work whenever it is too bad but i work thru the pain most of the time people just don't get it, coem out to the bars with us, no i don't dare drink, come for pizza with us, ice cream, road trip etc, no i don't dare. have sex- considering i have diarea constantly, awlful gass that i can't hold in and there is always a really good chance that if i lay down i will have stomach pain, no i think i'll pass so yeah i hear ya i'm not sure where we go from here or how it gets better but it must right?


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## MyOwnSavior (Dec 21, 2006)

rubyredroses said:


> everything else is just some ttimes sometimes i can have dairy some times fuit and vegges get me, some times exercise make me feel soo much better some times it make me have so much pain, i miss work whenever it is too bad but i work thru the pain most of the time people just don't get it, coem out to the bars with us, no i don't dare drink, come for pizza with us, ice cream, road trip etc, no i don't dare. have sex- considering i have diarea constantly, awlful gass that i can't hold in and there is always a really good chance that if i lay down i will have stomach pain, no i think i'll pass so yeah i hear ya i'm not sure where we go from here or how it gets better but it must right?


I've done a lot of thinking about this... it seems like people who "develop" IBS are oftentimes the ones who are the least deserving of it. I don't think the question that needs answered is, "Why do bad things happen to good people?" but rather, "Why don't bad things happen to bad people?" I mean, think about it. Most of the people on here are (or seem to be) quite nice people - quite the opposite of the arrogant, self-centered, narcissistic (albeit healthy) individuals I encounter in most other aspects of my life. Yet, the people here suffer with a condition that - at its worst - can completely destroy any social life that might have once have existed. That's also not taking into account the fact that many individuals on here seem to avoid excessive alcohol and other (illegal - I don't think life with IBS can even remotely be worthwhile without prescription meds to at least dull the pain) drugs. Yet, many individuals without IBS wantonly indulge in these substances, seemingly without consequence. I know in my case I've never been high OR drunk, and yet I'm the one that ends up with severe GI problems (IBS and GERD)... while my roomate (who went out to get totally messed up around 3 times a week) is in perfect health...I know life isn't supposed to be fair, but come on - shouldn't our actions have at least _some_ effect on how our lives turn out?


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## Haunted (Mar 29, 2007)

Completely agree with you MyOwnSaviour.I think this probably has something to do with the way we think and act. We know stress affects IBS, so shouldn't it make sense that all our other emotions and behaviours affect it too? I know that I for one internalise things to much. I don't often say what I feel like saying, for fear of being socially humiliated. You know when someone tries to make a joke, but the joke is really lame, and then everyone just stands there staring at them for a few minutes? That's what I mean by social humiliation. I hate that feeling. And I fear that if I say or do a certain thing people will judge me because of it. So I keep most of my thoughts and feelings to myself. If I'm feeling moody or depressed, I usually won't express it and will just keep pretending that I'm okay. And if someone's annoying me or doing something I don't like, I won't say anything. I never express any anger in front of my friends. I think I care too much about what other people think of me. Yet even though I comply to everyone else's social standards, I end up with this illness while all the crazy kids who do and say whatever they feel like are perfectly healthy.I guess one good thing about this illness is that in a way it’s forcing me to care less about what others think. My stomach is always making loud, weird noises, and when people hear those noises they probably feel like they don’t want to be around me (they sound kinda like internal farts). At first I got really worried and embarrassed whenever my stomach made a strange noise, but now I don’t care near as much if other people hear it.


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## MyOwnSavior (Dec 21, 2006)

Haunted said:


> Completely agree with you MyOwnSaviour.I think this probably has something to do with the way we think and act. We know stress affects IBS, so shouldn't it make sense that all our other emotions and behaviours affect it too? I know that I for one internalise things to much. I don't often say what I feel like saying, for fear of being socially humiliated. You know when someone tries to make a joke, but the joke is really lame, and then everyone just stands there staring at them for a few minutes? That's what I mean by social humiliation. I hate that feeling. And I fear that if I say or do a certain thing people will judge me because of it. So I keep most of my thoughts and feelings to myself. If I'm feeling moody or depressed, I usually won't express it and will just keep pretending that I'm okay. And if someone's annoying me or doing something I don't like, I won't say anything. I never express any anger in front of my friends. I think I care too much about what other people think of me. Yet even though I comply to everyone else's social standards, I end up with this illness while all the crazy kids who do and say whatever they feel like are perfectly healthy.I guess one good thing about this illness is that in a way it's forcing me to care less about what others think. My stomach is always making loud, weird noises, and when people hear those noises they probably feel like they don't want to be around me (they sound kinda like internal farts). At first I got really worried and embarrassed whenever my stomach made a strange noise, but now I don't care near as much if other people hear it.


I'm the same way. I can recall many instances in my life where I too was afraid to speak up for fear of being judged. In fact, I had to take a public speaking class in high school, and it was pure hell. In college, I remember sitting quietly while others would crack jokes, talk about sports, or whatever. It's interesting, I mean when you think about a mature, professional person, what comes to mind? Surely not the person who wears their emotions on their sleeve, who lashes out at any perceived slight. Yet, doing the opposite - internalizing emotions whenever possible - is seemingly much worse. I guess I internalize emotions a lot because, well, I'm a guy, and most of the time showing emotions is considered to be "too feminine" - unless it's anger, of course. Even despite that, though, I try to be pleasant when I can, and I definately try to avoid conflicts. It's just so strange that trying to be a good person like that can lead to much more severe (and life affecting) health problems than being callous and flying off the handle about everything...I'm glad to hear, though, that you at least received some "benefit" from your troubles. Personally IBS has only made me more self - conscious. Before, I at least had the benefit of being assured that I was "just like everyone else". But now ... I'm clearly not, which doesn't exactly help in terms of "social humiliation"...


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## kurrhlovesu2 (Aug 11, 2007)

hasting06 said:


> I'm 18 and have had IBS for 3 years now. Throughout high school when I was supposed to be having fun and going out with friends all the time, I had to wait to tell them if I'd be able to hang out because I didn't know how my stomach would feel. People often mistake me for snobbish because I don't readily agree to go places with them. But it's never safe for me to just say yes, because you never know when it will be a bad day. I feel like I missed out on so much because I was afraid of what could happen. I understand how you feel, it's extremely difficult.


I am 18 too and have had IBS for four years now. I had to deal with the exact same thing all through highschool and even at church in my youth group. None of my friends had IBS and could not relate at ALL! They thought I was mad at them or snobby. FAR FROM THE TRUTH! I love to go out, but rarely get too. If I commit to something I almost always have to bail like thirty minutes before. When I was in highschool it was really easy to blame it on my parents, who I claimed were just psycho and wouldnt let me do anything. It was a total lie! I felt so much guilt about having to bail or lie about why I couldnt go. I knew I couldnt just say, "Sorry guys, cant go, I have D." That was simply not an option. I am now living in my own apartment and have had to just come clean to some of my friends about it and just be like, you know I dont feel great everyday and if I randomly have to bail, you know why, because now I cant blame my parents for "not letting me go." I hate that I cant ride in cars with people, even my parents. I always get scared that I am going to have an episode in the car. Its a horrible phobia. I am so glad that I found this forum, I have never been able to talk about this kind of stuff!Are you going to college? I am so freaked out about it, I can barely function.


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## 20663 (Jul 8, 2005)

i know how you all feel...i'm having a very down moment right now that's being significantly impacted by my ibs. I'm 18 years old, and i've had ibs-d for four years. my cousins are visiting right now, its so hard hiding my belly troubles from them. its like you all say..its not like i can come right out and go, " sorry guys, i dont want to go driving around or go on a spur of the moment road trip because i might have a bad case of d at random." i mean thats what kids are age are supposed to be able to do right? and its not even that i feel bad for myself, i like who i am, and i like to think that for the most part i manage pretty well., but its times like these when there's no way to explain, that it bothers me. they want to go on a road trip to pittsburgh tommorrow. they dont know where we'll be staying, or where we'll go or what we'll do...and they're pressuring me into going. but i dont think i can do it. i feel like i'm supposed to do these things. you know..all that bs about this being the "time" of our lives, and we should make the most of this time while we have it. but what am i supposed to do?! do i limit myself b/c i KNOW i'll feel sick, or do i push myself to go and suffer, though i participte in the trip? anyone have advice?so you see, i truely feel for all of you...really...i do.


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## MyOwnSavior (Dec 21, 2006)

lucythedog said:


> i know how you all feel...i'm having a very down moment right now that's being significantly impacted by my ibs. I'm 18 years old, and i've had ibs-d for four years. my cousins are visiting right now, its so hard hiding my belly troubles from them. its like you all say..its not like i can come right out and go, " sorry guys, i dont want to go driving around or go on a spur of the moment road trip because i might have a bad case of d at random." i mean thats what kids are age are supposed to be able to do right? and its not even that i feel bad for myself, i like who i am, and i like to think that for the most part i manage pretty well., but its times like these when there's no way to explain, that it bothers me. they want to go on a road trip to pittsburgh tommorrow. they dont know where we'll be staying, or where we'll go or what we'll do...and they're pressuring me into going. but i dont think i can do it. i feel like i'm supposed to do these things. you know..all that bs about this being the "time" of our lives, and we should make the most of this time while we have it. but what am i supposed to do?! do i limit myself b/c i KNOW i'll feel sick, or do i push myself to go and suffer, though i participte in the trip? anyone have advice?so you see, i truely feel for all of you...really...i do.


I know if I was in your situation, I probably wouldn't go. But then again, I've pretty much given up on any kind of social activities anyway, just because of the stuff you've pointed out. So maybe telling you to emulate my life isn't the best idea. Therefore...I think you should go. It sounds as though, from what you've said, that you would actually ENJOY the trip, were it not for D. So, I don't know what medications you're on, but I know that when I have D and I take stuff like Pepto Bismol or something like that, it will cut down on my problems. Of course my main problem is not D, but rather severe gut wrenching pain. Nevertheless, I have experienced some relief from symptoms like that with products like the one I mentioned above. I know it's hard not being normal; hell I've had my share of suicidal thoughts, but I think if you've tried any products that give you any relief at all in the best, you should just load up on them and go. After all, you're going with your cousins, who I would assume would be people who would at least attempt to understand your situation. Or maybe if you're worried about having an episode, just tell them you have the flu, so you might need to make a few pit stops along the way. I'm sure they'd understand...


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## Haunted (Mar 29, 2007)

My aunt was supposed to be staying with us for a while this year, and my Dad's angry at her because she never came up, but I'm kind of glad she didn't. I don't think I could function properly with an extra person in the house who doesn't understand my situation. Also, lately when I wake up on a weekday morning I just feel like dying. I really don't want to go to school. And it's not because I don't like school or anything like that, it's because I know I'll be in pain for half of the day because of my IBS


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