Courageous Stories: Archive
Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer. Share your story.
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I was diagnosed as having IBS 3 years ago. Living in Japan it is very hard as I don't understand the language that well and struggle with doctors who don't really seem to care. It's good to get on a site and understand that I'm not alone. I guess we can all see that feeling alone is the hardest part to deal with. People invite me out and I am afraid to leave the house these days. I've even taken to carrying a bag of spare clothes and toilet paper just in case. I've never needed it yet but I guess the fear is what stops me from truly living life – when you go to the toilet 7 times a day and your friends lack understanding, when you have to get off a train halfway to your destination to find a bathroom, when you worry maybe the doctors were wrong and you should go back in the hope that it is something with an easy cure. To me no one seems to understand these problems and although I feel for everyone on here I am glad that I am not alone. Be sure to remember that neither are you.
– Name withheld by request
April 16, 2008
I discovered I had IBS after I gave birth to my little girl in 2005. Everything was normal until after my C-section – afterwards, I could not control the diarrhea.
Most of the medicine I tried for the IBS made my vision blurry and constipated me even when I tried to half the dose. I now take over the counter anti-diarrhea medication when I feel the pain coming on. Having this has definitely changed how I eat when I go somewhere and I also make sure I always know where the bathroom is no matter where I am. It’s just so embarrassing sometimes.
Thankfully I have a wonderful group of friends and family who completely understand.
– Crystal
April 1, 2008
It started in college some 40 years ago. The pain was intense and would last for 5 to 10 minutes. After college and several trips to the doctor and being told there was nothing that could be done to relieve the problem, I started keeping a record or events, type of foods, time of day. Fats and morning were the two common factors that accounted for 70% of attacks. Once I started controlling these factors attacks dropped by 60%.
With this problem you learn where the clean restrooms are and keep yourself focused on where you are in relation to one. I’ve found the best places to stop on the road are motels with lobby restrooms. When in the city I try to use government offices. It helps to always know where the next rest stop is as a back-up.
I tell myself as I approach a new situation: No one really cares about where you are going nor do they know how many times you have already been there. When in public with several people, I set my cell to alarm as if receiving a personal call and excuse myself.
– Name withheld by request
March 27, 2008
I have suffered from IBS since I was in the 6th grade – that would be 19 years ago. Looking back it was bad. I remember eating breakfast and then going to school and then my bowels would start in. Oh the pain, and of course the urgent need to go. I would hold it because it would be explosive, smell terrible, and often make a noise. At that age it was so embarrassing.
One day I held it and went to the school nurse; I wanted to go home because of my abdominal pain. The nurse called my mom to come and get me from school and as I was waiting in the parking lot I pooped my pants. I could not hold it anymore. That was the most devastating thing as a 12 year old girl. From that point on during the school week I would starve myself until I would get home from school. My parents thought it was all in my head and that I didn’t need to go to the doctor. I suffered with this until I turned 21, went to the doctor and was diagnosed.
During pregnancy my IBS was terrible. I became constipated – the worst ever. I have 3 children and with each one I learned how to control the IBS. I am now 31 years old and for the last 5 years I have suffered from constipation with IBS. I have finally found that an osmotic laxative, polyethylene glycol 3350, on a daily basis helps me though I still have occasional episodes where I get bloated, nausea, and have severe pain with diarrhea.
IBS has affected me in many ways as I look back through my life. It's a battle. No one really understands how miserable it is unless you live with it.
– Name withheld by request
March 20, 2008
Have you ever felt like you were odd, different from everyone else? Well I have a lot of my life. People look at me and want to be like me because I am thin. Little do they know I am miserable a lot of the time. When I was 20 my stomach started bothering. I was diagnosed with IBS in 1998. I was put on medication (robinul, an anticholenergic) and pretty much lived on water, bread and yogurt. People would bug me to eat and say I was too thin and needed to eat. When my husband and I would go out to eat or have people over I would be embarrassed and not want to tell them why I wasn’t eating, so I would look rude a lot of the time.
I had my little boy at 27 and graduated from college. I went for about 5 years with only mild symptoms, but they are back with anger! I went back to the doctor and was put back on robinul and I also take a dietary supplement for IBS. This helps but I still have really bad days. I get anxiety about riding with others somewhere, or going to someone’s house. I also have problems at school (I am a Kindergarten teacher). Most of the time I just do not eat at school and I eat dinner around 4:30PM. I try to exercise 6 days a week. I was chosen for Jury Duty recently and they act like you are crazy, no compassion..
I have learned that this is the way it is and I am a happy person but I feel it limits me and I would love to do so much more, travel, mission trips, even eat out. Most husbands surprise their wives with a night out to dinner, but that just causes stress and anxiety for me. I hate it and wish it was taken from me. I feel like a weirdo and I find it very embarrassing and uncomfortable. But I deal with it so much better than I did when I was younger. I have found dietary changes that work for me. I try to stay away from sweets, greasy foods, basically things that are tempting. I did go an entire month without getting sick to my stomach. This month my stomach has bothered me several times. I know it is not going to be perfect and I just thank God for the great, fantastic days that I do have. We may be different but we are not alone, even though we may feel like it sometimes. There is hope and with continued research they will come up with better treatments.
– Kimberly
March 18, 2008
Ever since my first day of college, 10 years ago, I have been suffering from IBS. Every day I would get in my car, take the 20 minute drive, and half way there I would have to blast the air conditioner and go through the worst pain before I could park my car and walk a half a mile to the nearest bathroom. This happened everyday.
The worst experience I had was a couple months ago. I went to the gym with my boyfriend and 2 minutes after we started working out my stomach started cramping and I knew I had to get out of there. I thought I could make it home, which was 15 minutes away, but that was not the case. After getting into my car I realized there was no way I was going to make it – half way home I had to pull over to the side of the road and run into the woods. I was so embarrassed that my boyfriend had to be there for that, but at least now he somewhat understands what I am going through and does not think it's all in my head. He actually apologized. Now I am terrified to go the gym because I fear that it will happen again.
I feel better now . . . I finally got that off my chest. What makes me feel better is that you will understand my pain.
– Name withheld by request
March 11, 2008
'It's all in your head.' 'You're just stressed, that's what your problem is.' 'Just relax, you're too high-strung.' …Just a few of the many expressions of disbelief and/or misunderstanding of others to a condition that I have battled the entire 26 years of my life.
I have never been able to eat out at restaurant, or a picnic, anywhere that did not have a bathroom readily available. I have never been able to walk out the front door of my house without having taken anti-diarrheals an hour in advance . . . and continue to take it throughout the rest of the day. Or I will regret it. I would watch people walking down the street on a hot summer day, eating ice cream without a care in the world. I was so envious of them at first, why couldn't I do that? My parents couldn't answer that, neither could my doctor at the time, nor any of them that came later.
As a child I could not seem to get anyone to understand that I really did always need the Kaopectate or Imodium, even worse, I was even accused of demanding these drugs to gain attention for myself. I was a child, I knew something was wrong, but no one else believed me. I was ashamed, and then I started getting ridiculed by the other children after the first accident. The name-calling still didn't hurt as much as no one believing me. So I stopped talking about it, and thought through every possible way I could learn to live with this and still appear like a normal girl.
After a lot of thought and tears, it seemed to me at the time that I had one option, if I was planning to go to school normally and not humiliate myself with the inevitable accidents. I learned to fear eating. I figured, if there was nothing there, I wouldn't have the problems. I could eat at night, once I got home and purge whatever was left in the morning before getting dressed for school. Seemed pretty simple, I thought it would work out great. I was wrong.
Four years later, I was first treated for anorexia at eleven after a teacher noticed that my ribs were protruding and called an intervention with the school guidance counselor and my parents. They all seemed to believe that I had a self-image problem and was starving myself to be thin. They were wrong. The truth in my case was remarkably simple. Fear was the ultimate appetite suppressant, and potential humiliation was a good motivator. But I couldn't tell them; that would have required telling people about my condition. No one had believed it before, why would they now?
I let them believe that I had a self-image problem, took subsequently prescribed anti-depressants, went to a psychiatrist and lived the lie rather than admit the truth. Instead of continuing the search for the source and a solution to my problem, I constructed my entire life around hiding it by:1) Always having a spare change of clothes, 2) Always carring at least enough cash to buy a soda to get past the 'Bathroom is for Customers Only' situation, 3) Not eating in public unless I had already taken Imodium and given it time to take effect, and taking it immediately after eating too. I had no other options, experience had taught me pretty early on.
If I was caught again starving myself, I could be forced into hospitalization for being a danger to myself and tube-fed. I chose that over admitting to my condition. It just got harder to hide as I got older, but boy, did I try. Especially when I started dating. Spontaneity does not exist in my world; it can't when you HAVE to take a mouthful of Imodium, and give it time to work, just to get out the front door. No surprise romantic dinners, or road trips, or long walks. In order for any of that to happen, I had to plan it to death.
At first, I would try my best to hide my problems with the ever-polite 'sick to my stomach', but as anyone who has spent time with me becomes painfully aware, there was going to be that instance driving down the road when I’d scream, 'Pull over!' They never seemed to understand that once I got to the screaming point, I didn't have time for the next exit or gas station. It made for lots of awkward if not completely humiliating experiences.
Years later as an adult, I found out that my mother has the identical condition. Her shame kept her from even telling me. She and I both suffered in silence for twenty years. We began to research our mutual problem, started going back to doctors. Many doctors again telling us it was stress, or the food we ate. I was even told by one to stop drinking tap water! They gave us anti-depressants, they didn't work. Changed our diets, that didn't work either. Homeopathic remedies, spiritual healings, I have done it all.
I doubt that there is a single 'cure' for this, and I am fairly sure that I will live with this for the rest of my life. But I will not be ashamed anymore. This condition has ruled me for as long as I can remember, and I want my life back. The ones who love me understand the pain I face every day, and give me the strength to fight on. My wish is that there will be a day when everyone can see this disease for what it is, and those that still suffer in silence can receive treatment in comfort and dignity.
– Name withheld by request
March 9, 2008
I was diagnosed with IBS in 2005. I have been very ill ever since then. I have constant flare-ups, and my main symptom is diarrhea. I also have daily bloating. I had an endoscopy, and it was discovered that my stomach is not functioning normally either. I have problems digesting food. Because of the constant problems I have with this, I cannot work. So I am in financial trouble, which adds stress that I shouldn't be in. I keep praying that they will research, and invent a medicine that will take care of this horrible disease. My mom has IBS (called spastic colon in her day) and she was on a medicine that took all of it away, then they took it off the market. I am on medication for my stomach problem, and I am taking a cholesterol medicine to control the diarrhea. My doctors just keep telling I have to "live with it".
– Trish
February 22, 2008I actually started crying when I was reading these stories. I've been so down lately because of what's been happening with my IBS, and it helps so much, so know it isn't just me.
I've had IBS since I was 10, around when my parents divorced. I'm 19 now, and things are so much worse than they've ever been. It started becoming chronic pain, frequent and absolutely debilitating, in the summer between my freshman and senior year in high school. I went on a school trip to Austria, and among all the stress and rush of changing planes, I got horribly ill. I was stuck in the seat by the window because my two friends were sleeping on their tray tables, and we couldn't land when we were supposed to because of the weather, and I didn't end up making it to the bathroom. So here I was, with my entire freshman class, crying and trying not to let on what had happened, with chaperones I didn't know who were, at best, completely apathetic to something I was too embarrassed to tell them about. The trip was a nightmare. I didn't know the language, at all, was yelled at several times by the people who cleaned the bathrooms from being in there so much and not knowing that I was supposed to tip them, having to randomly leave for another city at the drop of a hat for a few hour ride in a bus with no bathrooms- all while trying to hide it from everyone, even my mom. She'd really spent a lot on the trip, we aren't exactly rich, and I didn't want her to know what a nightmare it was turning out to be. It resulted in her not talking to me for three days, not answering my phone calls or my emails, because I confided to my best friend how horrible it was, how much I wanted to come home, and didn't specify it was because I was sick.
I ended up losing 30 pounds in two and half weeks. I literally stopped eating, just drank tea and the occasional apple. It was like a walking nightmare, not knowing here any bathrooms were, not being able to read any of the signs, lying to everyone when I was in so much pain that I just wanted to curl up and cry.
I got home and progressively got worse. Being in social situations was horrible. Even thinking about going somewhere without a bathroom was horrible. It still is. I've tried biofeedback, getting rid of dairy and wheat, exercising, anti-anxiety medications of every color. And now, I'm just thinking maybe I'll never get better. I want to go and thrash around in my favorite band's mosh pit, be able to stand out back by the bus afterwards for hours and wait just on the chance of getting an autograph. I want to go visit my girlfriend. I want to be the spontaneous person I am, I want to drive across the country on a whim, just because I want to. But I can't. And having to leave college, having to have my mom come pick me up because I just couldn't do it, couldn't take it anymore, having to admit that to myself and sit at home with nothing to do and nowhere to go. It's horrible.
It's true. Every story I read, the bottom line is – no one understands. Not unless you have it. We're not faking it. We can't just 'get over it' or 'psych ourselves down'. This is a horrible illness, and it's making me shake just writing this down. When I never tell anybody, I hate people worrying about me, I hate pity and sympathy. I just want to get better.
Thanks to everyone who wrote their story, and gave me the courage to write mine.
– Name withheld by request
February 20, 2008
I have had stomach problems ever since I was a little girl. I remember my mom having to give me enemas frequently just to help me go to the bathroom. I was always constipated. Now, I am 32 and still constipated more so than not. I do get diarrhea but usually only for a day. I deal more so with constipation. I have to constantly take a fiber supplement or it will be bad. If I forget, I can be constipated for several days.
I am not sure which foods if any really trigger my symptoms. I guess fatty foods and diary are suspects in particular. If my stomach hurts it hurts all day and even into the next day… sometimes for 15–20 hours. It is hard to describe the pain to someone who doesn't experience this. It is definitely not a normal upset stomach because I know the difference! I get what I call ‘hard tummy’ where my stomach gets hard as a rock and bloated and it looks as if I am pregnant. My pants are tight and I cannot keep them buttoned up. I just feel huge and uncomfortable. Sometimes I think that the pain would subside if I went to the bathroom, but I can't even do that because of the constipation! It is very embarrassing and annoying. My boyfriend tries to understand but it affects our love life as well... the gassiness and pain and bloating…
I am so happy that I found this site because I feel a little better knowing that I am not alone in what I am feeling.
– Name withheld by request
February 18, 2008
My eyes teared up reading the stories that are so very similar to mine. I am 68 years old and have had IBS since I was about 20 years old. At the time, no one knew what the problem was, I was told by a doctor that he hoped whatever was bothering me would go away. In other words he thought it was all in my head. I can't count the number of embarrassing moments I have had, many similar to those listed and worse.
I do know that stress does have an effect on exacerbating my symptoms as does dairy. For the last five years, my symptoms have grown farther and farther apart, although I still have them every few months... diarrhea and cramping and time after time on the toilet. The thing that has helped me mainly is hypnosis. It has helped me immensely.
I too always know where the nearest toilet is when I go out, and am careful to not eat too much before venturing out shopping or on a trip. Cruises are great because of the prevalence of bathrooms nearby as noted by one of the other submitters.
[Editor's Note: For more information on hypnosis as a treatment for IBS, please visit our Learning Center: Go »]
– Name withheld by request
February 15, 2008
IBS is a real issue. It affects dating, going on my daily activities and interacting with people I used to once interact normally. I know everyone says it’s hard to control and really heal; what is hard about it is keeping a normal social life and good self esteem when dealing with this problem. Going to the bathroom 8 times a day is not only disturbing but hard on self esteem, and I'm still looking for ways to solve this.
– Name withheld by request
February 14, 2008
Hi, I was very happy to find this website! My story is very embarrassing. I am a 52 year old female and had a hysterectomy about 5 years ago. Ever since my surgery I have had problems with going to the bathroom and gas problems. Finally today, I called a doctor for a check up. This was after three stops to different bathrooms on the way to my daughter's house. I do not know much about IBS, but need help and found this site to make me a little less stressed. It is very hard to do anything, even going for a long walk without bathrooms around. I hope the doctor can help me when I go in next week.
– Name withheld by request
February 12, 2008
I found out I had IBS about 3 years ago. I suffer with constipation on a daily basis and horrible gas and cramps. My doctor has tried different treatments but nothing seen to work. I stay home a lot because the gas and pain are overwhelming. I find it hard to be in the public with this problem. I use a fiber supplement 3 times a day so I can go to the bathroom. I'm at my wits end and don't know what else to do or how to get it under control.
– Lill
February 11, 2008
I am a female age 52. I have suffered from IBS for over 20 years. My symptoms are pain, gas, bloating and diarrhea; mostly diarrhea. I have not had a formed stool in 15 years, mostly watery or at best mashed potato like. The diarrhea part has gotten worse –more frequent over the years. My bottom gets very irritated at times and I am so sick of constantly cleaning out the toilet and dealing with this.
I noticed when I took a yearly vacation, always a cruise, with bathrooms everywhere my symptoms would lessen. I realized I was more relaxed and also I ate yogurt 2 to 3 times a day then. I started eating more yogurt at home plus added probiotics to my daily diet. It helped for awhile – fewer bathroom visits and more formed stools – but it doesn’t last. I am trying to keep a food diary to maybe rule out other food or add some foods. I am very happy to have found this web site. Tired of all the tests. Best wishes to all of you.
– Name withheld by request
February 2, 2008
I am 34 years old and was diagnosed with IBS in my mid-20s. After reading some of these postings I first want to say that there is hope. In the beginning, before they diagnosed me with IBS, I was constantly having stomach pains, diarrhea, and nausea. After every medical test I could take I was given the IBS diagnosis. For awhile I would have attacks weekly to the point that I stopped being social for fear that I would get sick while I was outside of my home. I missed a lot of work days and thought I would get fired – thank goodness that never happened. Although my family is supportive, no one truly knows what this illness does to you on an emotional level, unless you are a fellow IBS sufferer.
I was finally able to take control over my IBS when I changed my thinking towards it. I decided that I was not going to let this ruin my life. I changed my diet, tried meditation, and learned how to better deal with stress. For some people medication works; for me it did not. It made me feel worse, so I tried a holistic approach of meditating and diet change. I still have attacks, but they are not as frequent. Although I still have my moments of frustration over this illness, I am happy that I can now go out with my husband for a nice dinner without having to run to the nearest restroom.
– Name withheld by request
January 31, 2008
I've been a sufferer of IBS since I was 16, ever since then I had a number of doctors telling me I was faking and that the pain was all in my head or that I was stressed. Really the only thing I was stressed about was the pain I was in and couldn't understand why! I underwent a lot of scans, scopes and prodding, and my appendix was taken out for no reason, and all because of my IBS.
I was properly diagnosed when I was 18 and then I was told everything I couldn't eat such as wheat and dairy. However even though I've been given all the medication to help deal with my IBS. I still go through bad phases when I could be bent double over in pain for a week and I miss everything and become so bloated I look pregnant. When I get this pain I'm able to deal with my regular daily pain a lot more because it doesn't seem as bad anymore . I realized that I have to do my daily routine with this pain because then when it gets really bad I can’t do anything.
I am now 20 and in my 3rd year of college. I have missed a lot of college social events due to my IBS. The worst thing is when I buy a ticket to the social and am not able to go, that is when I get the most depressed because I miss out. Even though my friends are really good about my IBS and look after me when I'm in pain, I always feel they think I'm being dramatic with the pain and sometimes that I'm faking. It is also embarrassing when people ask what’s wrong with you and when they hear the word bowel syndrome all they can think about is toilet matters – and because I'm a girl I feel this has turned a lot of guys off me.
I'm so happy I came upon this website it really helped reading everyone’s story.
– Name withheld by request
January 20, 2008
I have been dealing with IBS flare ups for about 5 years now. I have been to numerous gastroenterologists with no relief. I’ve been prescribed 3 different meds, but when I get a flare up nothing helps. I've had tests including colonoscopy and CAT-scan and my results still point to IBS.
I am questioning myself if it is really IBS. Here's my problem, pain – severe pain. People talk about constipation, but I never get that, and diarrhea comes later when the pain eases up. I’ve gone to the ER 4 to 5 times a year because of pain. It doesn't seem to matter what I eat, and when I have a flare up, I cannot eat or drink anything because this causes the pain to get worse. Would any kind of colon cleanser (high colonic) help? My doctor told me it would cause me more pain. I don't need that. Thanks.
– Patricia
December 29, 2007Editor's Note: The hallmark feature of IBS is pain (or discomfort); it is associated with a change in bowel habit – either diarrhea, constipation, or both in alteration. Bloating is another common symptom. The pain/discomfort generally gets better with a bowel movement. For many people, pain is the most troublesome symptom. See our Learning Center Library for information on pain management. High colonics (colon cleanser) are not recommended (see our Clinical Corner – 'Is there a health benefit from high colonics?')
I have always been very active and never noticed any GI disorder-like symptoms until the last 6 months. I am 19 years old, and realize now truly how much of a toll the stressful last 4 years have taken on my body.
Four years ago my younger brother was diagnosed suddenly with cancer. Just recently, on Dec 1, my brother passed away.
I am a very healthy eater; no soda, no high fat foods. Yet, I find that eating anything just tears up my stomach and I have a hard time eating. Every time I eat my stomach balloons up and I find it very hard to go to the bathroom. I have tried cleaning myself out and that just makes it worse at first. I am thin but yet feel like I could probably lose about 30 pounds just by going to the bathroom. It makes me so tired. On some days all I feel like I am up to is sleeping all day and when I work out I feel better but it’s almost like my stomach has been stretched out, it is so uncomfortable. I have been to my doctor for several tests. I really need some help. This is hard for me.
– Breanna
December 23, 2007
I suffer from IBS and I usually get it in the mornings before I leave for work. I am sometimes on the toilet anywhere from 30 minutes to an hour. My mum always says it is down to stress but even when I am looking forward to going out with friends I get it. I take some meds if it gets really bad and I do try to watch what I eat, but I find it really hard.
– Name withheld by request
December 17, 2007
I am a 38 year old female who suffers with IBS on a weekly basis. It starts with diarrhea for a few days, then constipation. Very painful abdomen, can't wear tight jeans. Diet has little to no affect that I can tell. I am under a lot of stress, divorced, and in a custody battle over my son. I am a owner/operator of an 18 wheeler, so it is very frustrating for me to deal with this condition while on the road.
– Name withheld by request
December 15, 2007
Hello, I am a 42 year old female, and just came home from one of my countless doctor's appointments depressed again. I don't know whether I am coming or going anymore. I have had stomach pain for years. However, within the last year it has increased. I have had the endoscopy, colonoscopy, hysterectomy, and it seems like whatever else they can do you to you. My pain is significantly severe at times with cramping and stabbing pains. I also seem to suffer more from constipation. I have yet to find a doctor who is sympathetic to my plight. And no one has offered any kind of treatment, so it does seem hopeless at times. Although, I am on my way to another appointment in hopes of finding some kind of relief. I am also lucky that I have an understanding family, as this is most important for piece of mind. Good luck to all who suffer from this insidious disorder. My thoughts and prayers are with you all.
– Name withheld by request
December 13, 2007
I am a 40 year old female from Illinois. I have always had a ‘funny tummy’ and was told I had a ‘spastic colon’; however since July 23, 2007, my whole life feels like it has been turned upside down. First I developed a staph infection, then the official IBS set in. I was hospitalized in mid-August and have had every test done, but still I am sick every day. Colonoscopy was negative. Endoscopy was negative. Multiple stool samples and blood work show nothing. Diagnosis: IBS.
I feel like I have lost who I once was and don't know how to get ‘me’ back. The diarrhea starts every morning around 6:30 am and the nausea and stomach pain continue. I don't feel like I'm on an uphill swing until it is time to go to bed and then I absolutely hate it because I know this whole process will resume again tomorrow. I have said countless prayers and feel like a prisoner in my home. I know that I am depressed. I feel sorry for myself and for everyone suffering for this condition. It truly is life altering. I will continue my prayers and medication and plant my feet firmly on the floor again tomorrow a.m. I just wish someone would knock at my door and say ‘I can make you all better.’ Thanks for listening and God Bless!
– Leigh Ann
December 4, 2007
My IBS began just as I was finishing college. I was engaged to be married, looking for a job, living in a new city and all of a sudden certain foods began causing me to have urgent (very urgent) diarrhea. That started making me socially anxious which lead to bathroom urgency all on its own. This became a vicious cycle which, at the time I didn't understand.
I spent the next 20 years living with constant anxiety never knowing just when I would be in trouble. Sometimes I was fine and then, in the same general scenario another time I would be rushing to the bathroom. The only place I felt really comfortable was at home and the place I felt most anxious was at a friend's house for a meal.A gastroenterologist started me on huge doses of a fiber supplement and a sedative. One made me sick and the other made me dim. I moved on.
Finally, when I was about 40 a doctor suggested a low dose of the fiber supplement and that was the best advice I ever got. It has made me much more comfortable. Now I'm 57 and instead of finding better ways of coping with my IBS I find that I am losing ground. I don't have the emotional energy I once had and fighting this affliction every day has worn me out. I now get mild panic attacks when I feel uneasy about my ability to get to a bathroom when needed. I'm always fine with my wife but as soon as anyone else is present I can't handle things like eating out and then going to a show (that makes me anxious just to write down). Bottom line is that it interferes with my life more than ever. Even though my wife has lived with my problem for decades she still doesn't really understand. On top of everything, my company shut down the division I was working in and my IBS is interfering with my ability to find a new job.
There is so much I'm not writing but I know that those of you with IBS understand. There is a percentage of your consciousness that is continuously monitoring your bowels and keeping track of the nearest bathroom. There is a gremlin on your shoulder all the time whispering that you shouldn't have had that last meal or eaten so much. It also wonders how many stalls are in the men's room, will there be toilet paper, will the smell and the sound embarrass me at a friend’s house. And that continuous fear of the day I don't make it. What will I do??
I tell people about my problem...they don't really understand but they are sympathetic and accepting. I don't go into detail but I let them know that there is a reason for my odd behavior. It actually makes me calmer and less likely to have an attack. It's nothing to be ashamed of and if others want my company they will have to accommodate my affliction.
Well. if any of this sounds familiar welcome to my world. I'm sorry to say that your existence gives me a feeling of comfort that I am not alone. I know that everyone has a different experience with IBS, but no one should have to live like this. I understand what you're going through even if no one else does and I care.
Thank you to all who have written their stories...it has helped.
– Ken
December 3, 2007
My 'stomach problems' started after a trip to India 9 years ago, I was slightly ill on the trip back but didn’t think anything of it 6 months after returning home I was still having diarrhea up to 9 times a day with bloating stomach cramps, extreme tiredness and feeling generally run down. To cut a long story short I have had all the tests and eventually been told that I have IBS. Its been a long and extremely hard journey but life is better,. The hardest thing is that other people who don’t have IBS can never understand what its like – even the closet friends get fed up with you always needing toilet stops or stressing about new places. I have to be careful not to let food and bowels run my life but you can find a way to live with IBS.
– Emma
November 26, 2007
I was diagnosed with IBS in 2005. As a teen still working my way through High School, it’s very difficult to explain to my friends, teachers and others about the disease. I tend to go to the bathroom quite frequently and I sometimes encounter such severe stomach pains that I can't make it through during class. Many teachers have thought that I ask to use the bathroom so I can "skip" out on class (even though I would never do such a thing). Sometimes the stomach aches are so bad that I start crying, but I try to hold the tears back so I can make it through the class period, it never seems to work though. My Health Care teacher actually kicked me out of class because of stomach aching.
If I don't have something in my stomach for my stomach to feed on, it feels like my organs are trying to feed off themselves. The pain is so unbearable it’s hard for people to understand what I mean. I've had so many complications with my stomach, friends, teachers, and doctors; I could make an inspiring movie out of six years of complications. No one will understand how I feel, except anyone else who is going through what I am going through.
– Name withheld
November 26, 2007
I'm very grateful to have found this web site. The last 3 years have been so aggravating. I've always had ‘nervous stomach’, particularly during stressful situations. In 2004, the tests began: stool samples, urine samples, blood tests, barium swallows (eww), multiple doctor visits. All found nothing. I'm healthy as a horse, according to the tests.
It seems to come in waves. Sometimes I feel fine, no problems. Then for weeks at a time, anti-diarrheals are a daily necessity. The hour-long drive to work can be a nightmare. After dinner, every night, bloating and cramps. I've learned to stop eating before I'm full, but the pain still comes sometimes.
My mom also has IBS, a little bit worse than I do. I wish there was an official test to tell you what's wrong, so you don't feel like it’s all because you're eating the wrong thing or because it's ‘just stress’. Even worse, I also suffer from hypoglycemia (low blood sugar) so I have no choice but to eat despite my fear of those unpleasant symptoms, even when I'd prefer to not even look at food. I just hope that research continues while I try to figure out the best solution for me in the meantime. Take care of yourselves!
– Name withheld by request
November 19, 2007
I am so glad I found this site and realize I am not alone with all these symptoms. When I am nervous I feel ache in my stomach and constipation or the reverse. One time, I was afraid of getting cancer and my symptoms became worse. I went to hospital and the doctor assured me that it’s IBS, and it has nothing to do with cancer or other diseases. It was a relief and very magically, all the symptoms went away. So I think keeping a happy mind is an important factor in treating IBS.
I am still fighting it and don't know how long it will last. But I just want to share with other IBS sufferers my experience and encourage them. Don't give up. You are not alone.
– Crystal
November 19, 2007
I am a 40 year old mother of 4. I started having symptoms of IBS about 12 years ago, but I thought the diarrhea was due to a stressful job, so I suffered through it for 5 years without going to the doctor.
At the age of 31 I had a hysterectomy to treat prolapse. I hoped the IBS pain would go away with the surgery, but my doctor explained it is unrelated. A few years later I went on a low carbohydrate diet and for a year I do not recall being in pain. A year later the pain came back, I had a colonoscopy, the test came out normal and the doctor suggested that I may be allergic to wheat. I had allergy tests done to no avail. [For more on celiac disease Go »]
I have had constant pain now for 6 months. I've tried an anti-spasmodic and other medication with no luck. I still take the medicine even though it doesn't relieve the pain. I am afraid if I weren't taking it, the pain would be much worse. I'm probably wrong but I hold out hope for it to work.
I describe my pain to my co-workers as a migraine in my stomach. I can't concentrate on my work and I feel like it helps to push in on my stomach in the painful area. I appreciate reading the similar stories. I just wish someone would say ‘Hey, I found a cure!’
– Sonya
November 13, 2007
I was diagnosed with IBS about 3 years ago, not long after my Mum passed away from colon cancer. It's been a scary rollercoaster and my GP has been next to useless with ideas, he seems uninterested in my condition. I've not been tested for anything else, which makes the stress and worry worse because of my Mum.
It’s hard to go shopping, to the zoo with the kids, even walking them to school sometimes leads to me frequenting the loo about 15 times before I leave. I am now on the point of not eating, my theory being if there's nothing in there there's nothing to come out! (I have two small children so not eating is not really an option.)
Family don't really understand when I get the urgency and can sometimes get annoyed when we're out and they don't see much of me because I'm in the toilet. I'm at my wits end and reading similar stories has helped a bit. I hope there is more information and research available soon.
– Kim
November 12, 2007
I have never written anything like this before - where do I start?
I met the man of my dreams when I was 26 and life was amazing. He was diagnosed with a painful illness that left him depressed. I did my best to cope and nurse him, though it’s been hard on me too.. My partner is getting slightly better, however I took a turn for the worse and got diagnosed with IBS.
I cannot explain to anyone, even my partner, how bad it is and how it makes me feel and how it affects my moods. I need his support and it feels like I have lost him and I am losing the battle to IBS too. I am stressed out now to the max and I desperately want to save my relationship. I just feel I am so young and have so much against me and my partner. I have turned so volatile and sharp and short and don't know how to deal with all this.
– Louisa
November 10, 2007
Hi, I was diagnosed with IBS a year ago. My story started when I started attending university, there were days where I had to go to the bathroom 5-6 times a day on campus. It affected my social life in college both because I had to skip classes, and because I had to reject offers to go out with friends. The most disturbing moments are when I am in class and my stomach starts to rumble loudly, and I get the urge to leave the class and head to the toilet. Unfortunately, the medication has been no help, but over time I have come to control some of my symptoms. Hopefully, this nightmare will stop someday and my life will return back to normal.
– Name withheld by request
November 9, 2007
I am glad I found this site. I've been suffereing with IBS since I was about 16. I'm now 25. This disease, that's really what this is, is awful. I struggle day to day, from going to work and going places. I try not to let it control me but I just don't have control over it. It's been very hard to deal with. People just don't understand. This disease affects one on so many levels, not just the physical part. It's hard going somewhere and the first thing I look for is a bathroom for 'just in case.' Most days I wish I could just stay in my house. I know some of my triggers but most of the time it's whatever/whenever. I hope one day there is a cure. Good luck to everyone. We are in this together.
– Name withheld by request
November 6, 2007
I'm 19 years old now and I've been suffering from IBS since I was 9, Since then I have dealt with severe constipation and diarrhea constantly. I've had to leave friend's houses unexpectedly because of an episode. I've had to miss school and work. I only have to know where the bathroom is in any building that I am. Long car trips are the worst. My parents always know that when I say my stomach hurts, they have to quickly find the closest bathroom.
My stomach also makes loud rumbling noises all of the time, which can be incredibly embarrassing. I'm in college, and a lot of the time I have to leave classes because my stomach is making so much noise or I have terrible gas. It's incredibly embarrassing.
I have a wonderful boyfriend and I've tried to explain my problems to him but it's just so mortifying. He knows that when I say my stomach hurts, he's to leave me alone for a while. The other day we went out to eat and we going to go to his parent's house after, but whatever I ate caused an episode so he had to rush me back to my dorm. I literally almost didn't make it...
Living with IBS is really, really hard, mainly because it's such an embarrassing problem that explaining somewhat rude behavior such as leaving a party unexpectedly is impossible. I can't even tell you all how many excuses I've come up with in the past. I hope someday there is real help for IBS sufferers and it becomes a much less taboo topic for us all.
– Name withheld
November 4, 2007
Where do I begin... I was diagnosed with IBS about a year ago because that was the first time I really started to feel the abdominal pains. I didn't ever know what was wrong with me. I now cannot have a BM without taking a medication. I have gained about 8 pounds in the last 5 months all in my abdominal area due to bloating, and I feel so self-conscious. I am miserable. I did get a colonoscopy, and I was diagnosed with a ‘beautiful colon.’ Nothing is helping me. I'm at my wit’s end here. I am looking for any help. I want to be myself again. I am sleepy all of the time, my face is breaking out, and my stomach hurts constantly. It has personally and professionally affected my life.
– Maroni
November 1, 2007
I'm twenty years old and have been suffering with symptoms of IBS. Last night I had an accident. It was in the toilets of my Student Union. Unfortunately all the other toilets were blocked, so everyone was queuing to get in. I was so embarrassed and did not know what to do. People were trying to get in, and complaining about the smell… all I could do was sit tight hoping I could soon leave unannounced and clean myself up. The risk of things like this happening scares me, and I started to become afraid to eat. I don't even like leaving the house anymore just in case I get ill.
My friends don't know the extent of my embarrassing problem, and I don't feel I can fully share my experiences with anyone, which is getting me down. So many times I have to decline invitations to hang out because I’m in pain and worried about when I’ll next have to use the toilet; or my friends will be going to lunch somewhere I can't eat so I’ll decline. When I’ve said there's no point in going because I’m not going to eat, my usual excuse, they say come anyway. But the thing people don't understand is, that if I was to go a) how fun is it sitting watching people eat foods you want to but can't? and b) if I did decide to ignore my problems and eat anyway I’d spend the whole time worrying about getting a reaction, which just upsets me and makes me not enjoy being out with my friends.
It's so hard being at university where everything is geared towards drinking and socializing as I often don't feel able because of stomach cramps, or the fear of not being anywhere near a toilet. It's really getting me down, and I don't know what to do about it.
I'm due to have an ultra-scan and a test done so I can hopefully be diagnosed, but I’m so, so scared. I feel there's no one to share my fears with because no one fully understands. I hate it so much. Why can't I be normal like everyone else?
– Name withheld by request
October 27, 2007
I'm 16 years old but I've had symptoms of IBS for at least 4 years. Whenever I'm nervous about something, I get the 'nervous' pains and then the diarrhea. Then, I get even more anxious because I don't know if it will get better or if I'll be in the bathroom for another 3 hours. At this point, I've stopped eating full meals and snack throughout the day to try and make it through the school day. I always carry an anti-diarrheal with me just in case, but it doesn't always work.
I began going to a gastroenterologist and he diagnosed it as IBS and I tried herbal remedy which worked, but later completely became ineffective and other medications didn't work, too. I recently had a colonoscopy (nothing was wrong) and I was prescribed a very intense medication that I'm extremely apprehensive about using because it can cause major bowel problems if constipation occurs. I'm at a loss of what to do though. My life has stopped, working is a constant stress and it's hard to explain to friends...especially since it's so embarrassing! It's a huge relief to know I'm not the only one though...thanks to everyone who shared their stories. I don't feel so alone and isolated with this disorder.
– Name withheld by request
October 27, 2007
I have had IBS for over 20 years. I have tried dietary changes and medications for diarrhea, gas, and cramping. Nothing has helped, except eating nothing but toast, and that’s not a workable option. Unless they experience this condition, it seems there is no way for others – doctor, relative, or friend – to fully comprehend the misery that you go through. I always think that I want to ask everyone, ‘How would you feel if you felt like you had a stomach virus every day for 20 years, and that your bowels act as if you’d taken a laxatives so that you live on the toilet bowl. Or if you had no social life, no job that you really want but had to work at anyway. Or if you had to wake up several hours ahead of work time to try to have all the intestinal stress over before you walk out the door, and all the while have everyone expect you to carry on as usual.’
Can anyone possibly comprehend this if they have not experienced it? Not in my experience. I watch people at work eat breakfast, then lunch, then snack, and I think, ‘Wow, how do they do that?’ Then I realize how people take for granted the simple fact of eating and eliminating without even a thought.
– Name withheld by request
October 20, 2007
This is my first time visiting this web site. I was diagnosed with IBS 3 years ago when I was 35 years old. It has been three years now I am putting up with this syndrome.
Lifestyle – it has really taken a toll on my lifestyle. I dare not make any appointments fearing that my stomach might work up last minute. I have at this point totally given up holidays or traveling. I am also unable to take up challenging careers in fear of stress causing IBS. This also means I take back a smaller paycheck end of the month. Some of my friends are thinking that I am anti-social.
Fear – I go through so much of fear especially after an attack because the pain is still fresh on my mind.
Cure – I am hoping for a cure but I guess science has not come up with one yet. Meanwhile I live with anti-spasmodic tablets, controlled food, and good deal of prayers. Thank you for letting me share my feelings and I hope science will come up with a cure sometime soon.
– Cindy
October 23, 2007
Hi, I'm a 26 yr old married woman, mother of two and I was just diagnosed with IBS after suffering with bloating, cramping and constipation for about 3 years or so.
I've always had a sensitive stomach, but it had never been as bad as it's been these last few years. I just recently had a sigmoidoscopy to rule out other things, and it came back clean. The doctor says I suffer from IBS, I must say though that I'm thankful that it wasn't cancer because I was so terrified of that diagnosis. I'm trying to find ways around it now that I know I have IBS.
I'm glad I'm not alone. This disease isn't taken serious by most people. They think, if you're constipated just take a laxative, if you are bloated than just pas gas. Well I wish it was that easy. I walk around feeling like a kettle most of the time. It's so uncomfortable. I'm glad that I found this website and am able to share my story and read others and be encouraged through some. Good luck to all of you in finding something that will help.
– Name withheld by request
October 20, 2007
Hello, my name is Rachel. From the outside I look like a healthy, happy, normal 26 year old.... If only that were the case.
My problems with IBS all started on my 13th birthday. I have not lived a normal day since before that birthday. I went to doctors and specialists and had every test done. All I was told was that, ‘nothing’ was wrong with me. My last specialist went as far as to say it was all in my head and he wanted to put me on antidepressants. Can you believe that?
So for over 14 years of my life I’ve lived in pain and discomfort. My bowels only work once a month for me; the pain is excruciating. I have ended up in the emergency room numerous times. It is so scary. I can barely work anymore.
I eat all organic foods, no dairy, no real meat (all soy and tofu – yummy) lots of fruits and vegetables, high fiber, drink a lot of water, exercise, and still I am struggling tremendously. I have chronic pain in my lower abdomen. The pain is always there and when I eat it’s easily doubled in severity. Plus I get bloated, like being inflated with air, every time I eat.
I am dealing with all of this one day at a time and my spiritual faith helps me keep a positive attitude daily through all of these trials and tribulations., Since doctors have raised their hands in the air with no answers, I am determined to find some answers on my own. Hopefully they are out there somewhere for all of us struggling with this.
– Rachel
October 11, 2007
I am a 65 year old female that was diagnosed with IBS many years ago. I had the usual symptoms (cramps and diarrhea) after a meal. I’ve put up with it for approximately 30 years.
Nine months ago I went to the hospital for an unrelated procedure and contracted an infection in the hospital known as C. difficile. I have never been that sick in my life. After large doses of antibiotics I was sent home and my bowel has not worked even halfway right since. The doctor insists it is still IBS, but I have never read or heard of anyone with IBS experiencing what I am. Severe cramping with pencil size stools or not being able to pass anything. The abdominal pressure is so great I am forced to strain. Laxative and anti-spasm medicines relive it for a short time. Then it is up to 20 or more pencil size movements in a day. When I consume a few meals, it starts all over again.
I have not been able to work full time in the past nine months. I am self employed and it’s taking its toll financially. I have had 5 CT scans and a colonoscopy with no positive diagnosis. I would like to know if anyone else diagnosed with IBS has ever experienced these symptoms, and if any relief was found.
This disease has controlled my life completely. It feels as if my bowel is being constricted in some way. I can't go anywhere without a box full of pills for the spasms. I do take fiber supplements and stool softeners but when it locks up the only thing to get it loose is laxatives and/or anti-spasm meds. I pray everyday for a miracle. I feel for anyone who is crippled by this cruel disease.
[Articles of interest in IFFGD Library: Clostridium Difficile Infection; Gut Bacteria and IBS]
– Name withheld by request
October 10, 2007
I am 32 and have been suffering from IBS for the last 10–12 years. I am happy to know that there is a website where I can express my thoughts regarding IBS. It is very difficult when the pain occurs. I read the stories of other people and then realized I am not alone suffering IBS. I feel sorrow for all of them. I want to say, everyone, I hope you are able to keep smiling and enjoy your life though you have IBS.
– Ponkoj RoyOctober 10, 2007
I have had IBS symptoms for many months now and have had to drastically cut out most of the foods I used to enjoy. I guess I could look at the positive side of all this and realize that I have developed healthier eating habits and lost 20 lbs. as a result. Still, I miss being able to eat popcorn at the movies, have pizza with my friends or enjoy the occasional piece of chocolate. My family doctor prescribed an antispasmodic drug that I take three times a day. This has helped me a great deal. I used to not eat at all, for fear I would be in pain or throw up at work. At least I can now eat somewhat normally. I find that my state of mind plays a role in my IBS symptoms; I have been trying to relax more and it helps. I encourage anyone with IBS to try deep breathing, where you inhale through the nose and exhale through the mouth. Its amazing how that alone helps alleviate stress. I sometimes wonder if all the anxiety I have lived with since childhood has finally caught up with me and manifested itself into IBS. If that's the case, then maybe I can learn to stop it.
– Maria
October 9, 2007
Well everyone, I'd like to begin by saying it's so relieving to discover that I'm within a community of diverse individuals who share a common illness. Although, I do believe that most people are oblivious to and even doubtful of the harm of the illness.
I'm 19 years old, male, and currently a college student. IBS has been so bad for me that it's begun interfering with my happiness and physical health. I can't eat with family and friends, and I can barely manage the abdominal pain and upset. I also feel so depressed sometimes that I have IBS. I just wish it could go away and I could be normal once more.
I really hope there is an effective treatment for me so that I can finally begin to enjoy my life again. I’ve made an appointment with a gastroenterologist (even though it's 4 months from now!). I’m going to go see a therapist also to see if I can work out some of my personal issues. I really hope things work out. Thanks to everyone out there for sharing your story! Reading some of them really helped me feel like I’m with others in the same boat.
– Name withheld by request
October 6, 2007
I am so glad to finally find a website with people 'like me.' Since childhood I have had a 'bad stomach' and been sensitive to certain foods. The IBS really started last year. I have lost over 60 pounds in 1 year due to it. I have cut out lots of food from my diet, especially those high in fat, to help with symptoms or to try and prevent them. My symptoms vary from severe diarrhea within minutes of eating, to instant sweating and teeth chattering pain. It's really hard for me since I have two children, one almost 13 and one almost 4 years old. My husband travels a lot so I have to care for the children no matter how I feel. I also get afraid to leave the house at times and no longer work or attend school due to my condition. I know how it feels to be waiting in line at the grocery, suddenly having to go to the bathroom and barely making it. My husband is very understanding but sometimes you can't understand if you don't experience it. I am glad to know that others know how it feels. Hope my story helps someone else feel a bit more normal.
[Editor's note: Unintended weight loss is not a symptom of IBS. The gut becomes active when eating and many people connect symptoms and food. Not everyone is bothered by food, or by the same foods. Care must be taken to maintain healthy eating habits and not sacrifice nutrition or enjoyment by being needlessly restrictive. Take some time to learn how to sort this out is. Find out more here.]
– Stacie
October 5, 2007
I am not exactly sure when I started having stomach problems but I remember when I was pregnant with my oldest (over 4 years ago) feeling the best I had in years. Unfortunately that did not last. After my second child was born my symptoms started getting worse. I am a 32 year old mother of 2 young, active boys age 2 and 4; plus an elementary school teacher. I was diagnosed with IBS just this summer. The GI doctor recommended I take a fiber supplement, which actually made me feel worse. After getting the diagnosis I called the GI nurse asking if it would benefit to get a food allergy test. She told me no, it would be a waste of money and usually inconclusive. Wanting some answers, I went ahead and did it anyway. It was the best thing that I did. I found out that I am allergic to peanuts (do you know how much stuff has peanuts, peanut oil, even peanut flour in it). I eliminated it completely from my diet and immediately felt the results. I still have attacks due to other foods, hormones (a week before my menstrual cycle-every month), and stress but they are much less frequent and severe. I would love to be able to get rid of the symptoms completely. It is nice to read about others with similar problems and know that I am not alone. Even my husband does not understand what I go through.
– Bridget
October 1, 2007
Tonight I finally bought my first package of absorbent pads. I've been suffering with IBS for the last 5 months after being symptom-free for about the last 7 years. I had it when I was around 20 now I'm going on 27 and the same symptoms are back. I've had constant diarrhea, which has caused frequent accidents. I have maybe a 1–2 hour window from the time that I eat to the time that I have to go. It's horrible! I just got the job that I've always wanted and I had to have a meeting with my boss because I was caught by her boss leaving my post to use the restroom. A normal person can call for someone to relieve them for a few minutes and wait patiently for the relief person to arrive. I can’t. Sometimes I don’t make it to the bathroom. I clean up my mess and return to work. I've had to leave work and other places where ordinary life occurs to change clothes because of accidents. I'm thankful that my boss is a very caring, understanding, and supportive person. I also have very nice co-workers with whom I've had to share this embarrassing problem so they would know what was going on with me. My boss suggested the ‘special undergarment’ to help me be able to handle my problem. I told her that I had thought about it before, but I had hoped the problem would go away before it came down to that.
I do believe it has to do with a lot of different factors like stress and what you eat. But like others I’ve tried to control my stress, diet, and exercise and the problem still remains. I rely on my faith. I believe that the spiritual and physical go hand in hand. I've recently ended a bad marriage and I am raising three children, along with my new job and handling everyday life as well. It's hard but I know I'll get better. My hope and prayer is that in my sharing this with others that it will bring about the same hope and healing that I have received before and will receive again.
– Tici
September 23, 2007
Living with IBS is very hard for me. Right now I am only 12 years old and I have had IBS since I was 10. Sometimes I go over to my friends' houses and my stomach starts cramping up and I get diarrhea. It ruins all my fun! Last year, when I'd already been having IBS for about a year, at school I'd have episodes randomly during classes and I started crying very hard. I had no clue what was wrong with me! My mom took me to GI doctor and I told him all the symptoms I'd been having. The doctor understood everything so I didn't have to take a scope. I had some blood drawn, the doctor diagnosed me, and since then I have been taking medicine, which works for me. I have also limited my diet, and although I still can't eat out at restaurants very much anymore, the number of episodes I have in a week has decreased. Thanks for your support!
– Name withheld
September 22, 2007
I was 12 when I used to feel horrible pains but never thought it would affect other areas of my body. I always kept it to myself thinking the pain will go away. One day I went to my mom and told her about the pains and she said to me it’s nothing serious, but she didn't really know. Now at the age of 17 I told my mom these pains never went. So I decided to go to the doctor because I was constipated, my stomach was swollen, and it really changed the way I look. The doctor told me that I have IBS and that’s when I found out what those horrible pains were. I started a healthy diet which didn't really help me that much but I hope it will if I carry on with it.
To all the people that have IBS I feel their pain and know what they are going through. All I can say is have hope like I do and trust that everything is going to be alright.
– Name withheld
September 19, 2007
I have had constipation since I can remember. I am only 19 yrs old and I wonder why I have to go through pain and suffering due to this problem. I just got out of the hospital a day ago because I had unbelievable pain. I sometimes wonder will I ever have the chance to feel normal. For a moment I was thinking that I was the only one in the world suffering from what I have. I am so glad that I know I am not alone. There are other people out there that experience the same thing I do. I am trying to take different approaches such as discontinuing dairy products and eating more fiber to see if I can pinpoint what is causing the constipation. I do hope that I find something so that I can take the proper steps into feeling normal.
I remember when I was younger people use to think I was 'pregnant' because my abdomen was so huge. I have since come a long way. I now have a little more control of my bowels which is good, but I hope to eventually regain or perhaps gain full control of my bowels.
– Cory
September 20, 2007
It's good to hear that there actually are others who really understand and know what I've been dealing with for the last 11 years. My family understands as best they can but I have family by way of marriage who live in another state. It's been years since I've seen them because I can't or won't travel any more than I absolutely have to. I've had too many ‘incidents’ on the road over the years. Also, when the dreaded cramps and pain hit, waiting for the next rest stop 30 or 40 miles down the road just isn't an option.
This disorder has kept me from doing a lot of things that I used to loved to do. Even something as simple as a country fair is a thing of the past. When an attack hits, waiting in line for a toilet, again, just isn't an option. I try to hang in there at work as much as possible, but there are days when it just isn't possible.
Anyway, I appreciate knowing that I'm not alone, not just in the disorder itself but in the fear and stress that accompanies it. I even choose grocery stores and shopping areas where I know just exactly where the rest rooms are. My doctor has treated me with anti-anxiety drugs and I use loperamide, which is helpful most of the time. But the uncertainty of when an attack is coming still causes a lot of stress and anxiety. Anyway, thanks for sharing and listening!
– Name withheld by request
September 14, 2007
I'm 18 years old and have had symptoms for 6 years. I recently was diagnosed with IBS and only now am having some relief. I tried exercise and regulating my diet including trying to figure out which foods caused problems and which didn’t, but it always seemed to change.
I usually go three days without a bowel movement then suffer severe diarrhea for hours at a time with varying levels of pain. On good days it's mild and lasts about an hour . . . on bad days I’m doubled over in pain, vomiting, and passing out. I'm absolutely terrified to travel (even going as far as canceling a trip to Europe). Going out for dinner is a risk; depending on how the food reacts I could be rushing home. I’m absolutely mortified – I refuse to use the washroom anywhere but home, which poses a whole new set of problems.
I'm constantly canceling plans with friends because I’m 'sick' and even calling off work last minute. I refuse to tell anyone what I have so I’m constantly bombarded with accusations of eating disorders because I’m so picky about what I can eat. I’ve been trying not to let this control my life but I constantly feel like I need to get to the washroom and can never tell a false alarm from the real deal. If I’m not in pain I’m worrying about being in pain later. I’ve recently started a medication prescribed by a physician. I do find the pills helping but since it’s a 3 times daily med I find it difficult to balance school, and my social life and when I do forget a dose I can really feel the difference. This disease totally takes over your life but it does help knowing other people understand. I wish everyone on here the best of luck and anyone who may read this.
– Megan
September 12, 2007
I’m an IBS patient that has struggled daily with a very painful and real disease that can occur at any given moment without warning. Ever since I can remember, I’ve had the classic symptoms, but for years never knew why, or understood that I did indeed have a very debilitating disease.
Even though I struggled with painful ‘attacks,’ I tried to ignore what my body was dealing with or telling me, even when I was at work or social gatherings. Unfortunately, as time went on, the symptoms seemed to become worse, until I could no longer carry on in this manner and my body eventually had broken down.
I had my dream career as a law enforcement officer and had to leave it all behind due to the persistent problems with my illness. You see, wearing a duty belt and bulletproof vest on a daily basis, including grueling shift changes, can be very painful for an IBS sufferer. No amount of pain medicine could relieve my symptoms and allow me to function, as needed. Let alone, running to the bathroom every five minutes, when after-all, I had a very serious important job to do, and time was of the essences when dealing with emergency responses as a patrol officer. Even court dates were a huge issue and eventually I had missed too many days of work, to continue my career.
Years later and after many tests, emergency, and doctor visits, gallbladder and ovarian surgeries, I was finally diagnosed. I later had a complete hysterectomy due to complications with my IBS ‘flair-ups,’ along with other ovarian problems, to try to help relieve some of the discomfort associated with being a woman and dealing with the disease. Unfortunately, it didn’t take the disease away or the symptoms.
I think I’ve tried every diet plan known to man and every advice given by my doctors at one time or another and the problems still persist. In fact, recently, I’ve been suffering for two weeks straight with another long bout of pain and complications. Furthermore, I’ve tried anti-depressants (even though I’m totally against them and not depressed), prescribed medications including tegaserod, additional fiber treatments (that can lead to bloating, gas, pain and other problems), and to no avail; problems continue with new added side effects from the drugs. Some of the symptoms that are relieved briefly and will always return with usually worse problems in the end. This in turn, usually requires higher dosages, additional and/or different medications. Unfortunately, no amount of medicine or diet plan seems to truly alleviate the problems.
Even if as I try to help relieve the symptoms from another daily attack with the knowledge I’ve gained dealing with the disease, I really can’t make it go away. It always returns at a moments notice! There’s no cure or hope to live a normal life, like other people can, knowing that it can occur at any time. This disease is so disabling to those like me that can’t even keep a job, no matter what type it is. I’ve tried several, including working in the home, over the years, since I had to leave the department with no compensation. We can’t claim disabilities, or receive proper medical care, because the government doesn’t recognize it to the standards of other diseases and disorders. So what is a person like me, to do – remain unemployed and feel helpless, knowing that I cannot continue to do a fulfilling and rewarding job that I once enjoyed?
My social and professional life is not as fulfilling as I would like it to be, no matter how hard I try. Those of us that have IBS are not the only one’s that suffer. Family and friends also have to deal with the issues that I deal with on a daily basis. That in itself, is very difficult, especially when they don’t understand this disease or believe it to be serious, because after-all it’s not ‘officially’ serious in other people’s eyes. How would you feel as a law enforcement officer being told by a doctor that you were not right in your head and that’s why you're imagining your pain and suffering? And I know for a fact, that I’m not the only one being told this by medical professionals. For those family members that do see you in actual severe physical pain, they feel helpless and concerned for your welfare, since there’s no relief or cure for you until it passes on it’s own, whenever that is. Then it returns and starts the whole process all over again.
Until you have a loved one, or personally go through the same that many of us have, you cannot even begin to understand this life-long debilitating disease. The seriousness, hurt, frustration, embarrassment, disappointment, extreme pain, loss of a normal life/career, and complete suffering of the symptoms from IBS that inflicts people on a daily basis. Please give this medical problem the same fairness of treatment, research, funding, understanding, and respect that other diseases already have.
Thank you for listening and giving me the opportunity to express my thoughts.
– Name withheld by request
September 24, 2007[Editor's note: Surgery is not a treatment for IBS. Yet IBS patients are exposed to more surgical procedures than the general population. Find out more here.]
I was diagnosed with IBS 4 years ago after a particularly bad episode of diarrhea. I now realize that I have been living with this monster since I was around 16 years old. For the most part I put it off as food poisoning or a stomach virus or something going around thinking I was just one of those people who picked up everything.
I have found some things that have helped me include dietary changes such as limiting consumption of alcohol or caffeine containing drinks, eating smaller meals more frequently, and avoiding food I find aggravates my symptoms. I also take a probiotic and have found that with ongoing dietary rules I have set myself I have only had 7 episodes since I was diagnosed, which is doing well for me. I found that certain broad-spectrum antibiotics trigger episodes in me. I’m not sure if there is any link between the two. [Editor’s note: Antibiotics are medicines that destroy bacteria. Antibiotic therapy is a common source of diarrhea. About 20% of patients taking antibiotics will develop diarrhea.]
I just hope that my story helps someone else to manage the monster and start to look forward to a brighter life as symptom free as possible; and that rather than IBS ruling you, you are able to rule it and enjoy life.
– Name withheld by request
September 20, 2007
I have suffered from IBS for my entire life. Until a few months ago, I thought it was just me being a hypochondriac. I remember being 7 years old and refusing candies from my teacher because they gave me diarrhea. My teacher told my parents and they all thought it was so cute – not that I was serious!
When I was 13, I ran for class president. Right before the results were announced, I got the ‘feeling’ (as I had come to refer to it as), and I had to go home ASAP . . . from then I learned that certain foods, and any anxiety-producing situations would cause ‘the feeling.’
Going to college was a nightmare. I was so embarrassed about having to share a bathroom with 8 girls on my floor. Luckily we all became really close, and it was definitely much better than it could have been.
This summer I was talking with a friend who told me she had IBS. I had never even heard about it. She told me the symptoms, and it sounded a lot like what I had! I had always thought my flare-ups were normal, and that every person experienced them. I thought it was my fault for not eating healthily enough, or by putting myself in anxious situations.
It took a lot of courage to tell my doctor about it. I usually don't get embarrassed, but I finally just laid it all out there. I knew she had heard way worse stuff in her career, and it was nothing I should be ashamed of. She diagnosed me pretty much on the spot, and gave me some medicine.
The medicine has been working incredibly. I haven't had one flare-up since I've been on it. I take it 3 times a day, so it is kind of a pain, but way worth it. I do get some cramping, but nothing like the excruciating pain that I used to feel.
I'm no longer embarrassed to go out to eat with people, and I don't have to worry about finding a private bathroom to use. I am so much happier and confident. I encourage everyone to talk to their doctor if they expect they may suffer from IBS. I lived with the condition for my entire life (22 years) before I sought help. It was the best thing I ever did.
– Name withheld by request
September 14, 2007
I just came across this website today, and I must say that while it's hard to hear about everyone's suffering, it is comforting to know that I am not alone; it's also inspiring to hear the message of hope in many of your stories.
I am a 28 year old female that has been dealing with IBS for about 10 years. My symptoms are constant and occur daily and include bloating, gas, and constipation. If I do get relief it's minimal. It never feels as though my bowels are completely empty. I spend at least 30 minutes several times a day in the bathroom trying to go, because the urge or feeling that I have to pass a bowel movement is constant. Strangely enough, more times than not I experience what I refer to as 'constipated diarrhea' – an oxymoron I know! I've tried everything from yoga to diet changes, etc.
I wanted to share my story for several reasons, but mainly I found it disturbing that the doctors I visited wanted to know if I was constipated or if I experienced diarrhea. My IBS (as I'm sure is most of yours) cannot be so easily classified as one or the other. IBS is made up of many components with the symptoms ranging from discomfort to painful. The severity of the symptoms changes on a daily basis for me. The only constant is that the symptoms are there. Good luck to everyone.
[Editor's note: Pain and discomfort related to altered bowel habit are the hallmarks of IBS. But what is ‘altered bowel habit’? The commonly used terms diarrhea and constipation mean different things to different people . . . and to physicians as well. Yet bowel symptoms affect treatment choices so it is important that you and your doctor be ‘speaking the same language.’
How do we 'translate' bowel symptoms in a meaningful way? Does diarrhea mean frequent stools, or loose stools? Most people endorse a loose stool as diarrhea more than the frequency of bowel movements. What about constipation? Doctors consider constipation a hard pellet-like stool, because that reflects that the stool has remained in the colon for a long time. But to many individuals constipation means infrequent stools, difficulty or straining at stools, the sensation of wanting to go but can’t or of not having finished a bowel movement. So while it may seem strange to have ‘constipated diarrhea,’ if one has difficulty having a bowel movement or feels he or she hasn't finished but has a loose stool it all makes sense.]
– Kate
September 9, 2007
I am 23 and my IBS started after I developed anorexia at University when I was 20. I managed to get better and get to a healthy weight and I thought that would be the end of my tummy troubles. But since then I have suffered from constipation and severe bloating. I can be OK for months then a sudden attack comes on and I start going to the toilet less frequently and my tummy starts to grow. Last December 3 people asked me if I was pregnant and it upset me so much that I stopped going out, I'm so self-conscious about my weight that the comments just made me so depressed. The first time I went to my doctor she told me I was just fat and needed to lose weight (I know the difference between weight gain and bloating!). After 2 months of pain and not going to the toilet I had to be taken into hospital for help. I finally got the diagnosis of IBS. I take an anti-spasmodic, which works when I'm relaxed and stress free.
My only problem now is that I get quite stressed. I've tried everything out there to help and nothing seems to work. Then my tummy starts to grow and I begin to get constipated, which is uncomfortable. It makes me moody and I look nine months pregnant, it really is such a distressing illness to live with.
I eat right, do yoga/meditation, drink disgusting herbal tea and try to de-stress as much as possible. I think that you can make all the life style changes you want but if you are still stressed then the IBS will not go away. I have noticed that when I am stress-free and happy my IBS seems almost non-existent.
It’s great to read everyone’s stories and it really helps to share my own experiences. Good luck everyone.
– Rachel
September 5, 2007
I’m from Sweden, 57 years and I have had pain in my stomach my whole life! I am lactose intolerant in addition to having IBS and I spend all my time trying to find out what to eat and when to eat.
When I was 14, I went to a doctor, but he couldn’t do anything. My father brought me to the hospital in 1967 and I was there for 8 nights. Before I went home the doctor told me the pain was due to my period! For many years the doctors have even told me that I don’t really have a GI problem, because I am a Swede, and people with Swedish ancestors don’t have that kind of problem! I’m so sick and tired of people who don’t know how much pain this causes.
– Christina
September 5, 2007
I was recently diagnosed with IBS and I am only 15. I am on medications to control it and have not been shy about my IBS with people close to me. However, even though I can control it sometimes, there are other times I can't. I guess I've learned to accept it and to not let it rule my life. After all, we only have one of them, right?
– Name withheld
August 30, 2007
I suspect that I’ve had IBS for years but it was only confirmed a few months ago after an awful experience on the way to the airport for my recent holiday. I had to keep stopping at every service station on the way and struggled not to mess myself, which was not only unpleasant but embarrassing (as I’m sure you can all relate to). I took anti-diarrhea tablets all week, which stopped me from having the need to go to the toilet until the last day when I ran out of tablets and couldn’t stop going to the loo until I got a new supply. The whole ordeal was so nerve racking and stressful that months later it’s still making me feel unhappy and paranoid that it will suddenly strike.
For weeks when I came back I couldn’t bear to go out. I’m only 19 years old. It’s a time when I should be going out, but even getting on a bus has become an issue.
For awhile my life started getting back to normal when my symptoms stopped but they’ve recently come back, which has brought my fear back. I start college again soon and I’m starting a new important job, which is making me sick with worry. I’ve been to the doctors several times but they don’t seem to understand the emotional effects of having IBS.
I feel like its changing my whole life and it’s making me so unhappy. I respect all you others, who suffer too so much, for sharing your experiences learning to cope well. I just love my boyfriend so much for helping me through it all. I suggest confiding in the ones you love and care about, as it has really helped me.
– Kat
August 30, 2007
I'm a 35 year old male from India suffering from IBS for the past 10 years. Doctors have advised me that there is no medicine for IBS, but that it would automatically improve day by day.
My problem is that I have to go toilet 3 to 5 times a day, usually at least twice in a morning. Sometimes, I have to go after taking meals, tea, or coffee. It is not always possible to get to a toilet and then I feel ashamed. This causes fears and thinking continuously about what will happen when I leave home. I can’t control my bowel. I feel guilty and become depressed. Is there no way to improve this condition?
– Sanjay
August 28, 2007
I am a sufferer of typical IBS symptoms and spend between 4-6 hours on the toilet daily. I get up early in the morning just so I have time to try to relax before I go to work; then I spend my lunch time on the toilet. I finally began to get some relief, for the first time in my life, when I started taking the prescription drug for IBS with constipation that was then taken off the market. Now it’s available again but at only one-half the dose that helped me . . . back to square one.
This disease is indeed an invisible problem. As soon as you say that you have IBS people pigeon hole you into the group of ‘it's all in your head’ diseases. So I usually tell people who ask that I have colitis (it makes people see you as someone that has a ‘believable’ and a ‘real’ disease). I hope that soon help will be available to us and this disease will be seen as a true condition that has a devastating affect on our lives and the lives of our families.
– Name withheld by request
August 19, 2007
This is my first time visiting this web site and after reading all these stories I don't feel alone. Thank you for taking the time to share your stories. I can truly relate. I can't exactly pinpoint when all of these symptoms and problems began as it seems forever. I feel blessed that I don't have a life threatening illness but, on the other hand IBS has put so many limitations in my life. As someone who has IBS it just seems that we are held hostage by this terrible disorder. It affects me in so many ways. I don't seem to enjoy the things I used to. I am 43 now and like so many of you I can't enjoy going out and eating with my family or even feel like I can travel much unless I plan my routes and eating schedule. However symptoms may arise without having to have eaten anything at all.
My symptoms have worsened and some days I am in a lot of pain. Like many of you I am currently seeking treatment and nothing seems to help. My hope and prayer is that someone will find a cure for this debilitating condition. Unless someone has IBS it is hard to explain our frustrations, embarrassment and our inability to control our sudden urges to go to the restroom and our limitations. We are limited to what we can do or where we can go. It is especially difficulty when you have a job where you travel, and speak in front of groups of people. When I have a meeting or speaking engagement I tend not to eat and sometimes this may be all day and this causes other problems such as headaches and feeling tired or weak. One last thing I'd like to share with all of you. Don't ever give up. Let's pray for one another for strength to make it day by day and an uplifting spirit when we are feeling down. Thank you for letting me share my story. This was very therapeutic.
– Name withheld by request
August 16, 2007
I’m 27 years old and from Iran. My first symptoms of IBS (diarrhea) appeared when I was 14 years old and I had to go to the bathroom frequently. I was so ashamed to go out of my class several times. Often bloating was very difficult. No one could find the reason for my stomachache, nausea, and diarrhea. I was (and am) sad and disturbed always. I worry about going out socially or to classes. I don’t eat or drink most foods before I have an exam or any class. Sometimes I’m very disappointed and I feel my life is being wasted. I’ve lost my self confidence. In the last 2 years I’ve used several drugs for diarrhea, inflammation, and anxiety to control my symptoms; they make me feel better but their effects are short term and if I forget to use them my symptoms come back. It’s very difficult to adapt with this disease. Really, isn’t there any way to cure it?
– Somi
August 15, 2007
My IBS with diarrhea started when I was 13 years old; I am 21 years old now and still living with this condition. When it started I had to stop taking the bus in the morning because I’d have to run to the bathroom every morning (even to this day). Ever since it started it has controlled my life. It is a constant threat. I don't go where I want or leave my house when I want.
I remember in high school going to a play in NYC with my friends and I knew there were very few chances for me to use a bathroom on the turnpike, so I refused to eat anything for two days before the trip to make sure I couldn't get a ‘stomach attack.’ I’m underweight from lack of food out of fear of getting diarrhea. It’s getting a little better as I know the signs of an oncoming attack and when I am safe. But I still don't go out when I want or where I want.
I live in NYC and taking the subway in the morning is hell. I refuse to visit my friend in Brooklyn because I know that there are few restaurants, bars, shops or other places that would let me use their bathroom. I would love to travel to other places around the world, but I know with IBS it makes those trips impossible.
I really wish someone could just exchange their digestive track with me so I can just lead a normal life and not have to be in constant fear and stress. The prescription antidiarrheal drug I got from my doctor does help a lot but I still get attacks and I still live in fear. I'm glad I found this community because I can relate wholeheartedly to these stories and it makes me feel a little less alone in this. Thanks.
–Alison
August 10, 2007
I am 32 years old and I have been having stomach problems for eight months now. I began having nausea, stomach pains, severe heartburn, and bouts of diarrhea, and embarrassing gas. This was all unusual for me, especially the amount of gas. I also felt so tired and didn't feel like doing anything. I am a teacher and I found myself becoming exhausted and agitated because of how I felt. I also have a spine problem that can affect nerves in the lower spine. Dealing with both problems was very difficult at times. I was also experiencing several very stressful life events at the time.
I went through different acid meds for my stomach and have found some relief from a PPI. I've had an upper GI and many blood tests but they haven't found anything serious, luckily.
Then today at the doctor he mentioned I may have IBS. I would definitely say I have a mild case, however. After hearing all of your courageous stories I realize that my condition could be much worse. I can certainly relate to feeling like you don't want to eat anything. If I don't eat I feel great, as crazy as that sounds. I obviously need to keep eating so I'm hoping that the med the doctor gave me will help some of my symptoms, especially the bloating. It's very ironic that I'm eating less than ever, working out daily, and yet I still feel like I'm gaining weight!
Anyway, I feel lucky that my symptoms are as manageable as they are. I wish all of you the best of luck. You are all very strong, courageous people.
– Mel
August 9, 2007
My history with IBS is long, and it doesn't seem like it's going to end. Since I was 6 years old (I'm 24 now) I've been having horrible stomach aches that are only relieved by going to the bathroom. It started after I almost drowned and got worse with time; frequent stomach aches, gas, and urgency to go to the bathroom. From the age of 10 I’ve had every test possible. I've tried everything! Nothing helps.
I got to a point where I stayed at home, making up a lot of excuses and shutting myself off from the rest of the world. I was mentally dead. Three years ago I traveled abroad for 3 months and it was a nightmare. I've been to so many bathrooms in my life that I'm sick of them.
The worst thing is that my family (except my twin sister who is, thank God, healthy) doesn't understand my situation. My brother just doesn't understand how an adult cannot “hold it” and has to go to the bathroom every hour.
I had so many embarrassing moments because of IBS, such as stopping a bus I was on at a gas station just so I could go to the bathroom, while causing 49 people to wait for me. I wanted to die of shame! I quit a job due to IBS. I couldn't work alone in a candy shop. This was a turning point for me; things got worse after that. I had given up almost everything. But I missed having a life, especially a love life.
Last year I decided to make a drastic change – to get myself a life. I started going out, regardless of the stomach aches and the need to go to the bathroom. I've decided that I'll deal with it when I have to. I started meeting new people and I have even had a boyfriend for the last 9 months. For awhile I was able to hide my IBS from him, but I eventually told him. He was supportive, but he still doesn't get what IBS really means.
It is a daily struggle to live with IBS. Every time I find myself planning my life around this disease I start getting depressed, though I try not to think that way. I don’t want to go back to my old way of doing things. The stomach aches are the same, and I have the same symptoms. Nothing has changed physically, yet mentally it has changed a bit. I still wake up every morning, asking myself, ‘Why me.’ I still envy people walking down the street for not having to think about where is the nearest bathroom, or being able to get home by bus before the pain starts. I'm still afraid of going hiking, of going abroad.
I was offered a job as a teacher (I have a teaching certificate) but I'm still very nervous about what will happen if I need to go to the bathroom and leave 30 children alone in class. Every day I seek for a solution and I read a lot about IBS. I still don't know how to deal with it, but one thing I do know – surround yourselves with people you trust and love because it is the only way to survive.
– Name withheld by request
August 4, 2007
All my life I lived on over the counter medicine for gas relief. You name it, I've tried it. Nothing worked. I wake up in the morning with a flat stomach. The minute a drink or food goes in my mouth, I look like I am pregnant! Even water bothers me. I love food, believe me! But I do not look forward to meals at all. I am constantly bloated and I feel like I always have gas. How do you explain to your lover that you don't want to be intimate because your stomach hurts and you are afraid of passing gas! How do you tell your friends you don't want to go to the beach today because your stomach looks too big for your bathing suit. How do you tell yourself you look good when you try on clothes at the store and cannot button the pants size you should fit into. I feel horrible all the time.
The one prescription drug that finally worked for me is suddenly no longer available. One doctor told me, "Sorry, nothing is going to work as good for you." Now what!
I have been to many doctors and many have treated me like I am an idiot. Nobody believes me. I am off again to see another doctor and I am not sure how this will go. I have been off medication for a few months now and I am tired of feeling sick all the time. I have not even found a diet to help me. I recently found this website and I was so excited to finally see something that showed encouragement and a desire to want to help people. I just hope someday we will be able to find relief!
– Kristen
August 3, 2007I am French, and have suffered from IBS since I was 12. The symptoms have changed throughout the years, but they have remained very present. Until recently, I was very frustrated because I felt I was the only person having tummy aches like I do. I would try to hide my problems by finding excuses for not going to this particular theater because I didn't like the seats, or because it was too expensive, whereas it was only that the bathroom was not clean enough. I was always scared someone would suggest we do something like hiking, or go to an outdoor concert.
Now I'm starting to accept myself as I am. I've decided to organize my life around what I can do or not do, and not lie to others. If I plan something and feel sick a few hours before, I'll just cancel (when it's possible). Of course, that's how I feel in good days. When I get a flare up (and they can last from a few days to a few weeks), I take medicine, watch my diet, and wait for it to go away.
People who don't suffer from IBS cannot understand how hard it can be. It's not like a tummy ache once in a while. It's something that's always on my mind (and nerves), even in good days.
It feels unfair sometimes, but I try to concentrate on nice things I have in life. IBS is a very big handicap in my work. Even though I've been proposed very nice opportunities at work, I've declined because they meant going abroad from time to time. And having to travel is hell for me!
I've recently realized that I was reluctant to have a baby, because I'm too scared my child might get that problem too. I have no clue whether IBS can be transmitted genetically. But I don't think I could bear the guilt if my child had to go through everything I've suffered.
I'm still hoping I will get better one day, though. I've started psychotherapy and I'm hoping it'll help. I must admit it's very comforting to know that others feel the same way I do!
– Celine
August 2, 2007I’m 20 years old and have been suffering from IBS every since I was 15. It’s been so embarrassing; I hardly ever go anywhere because I fear I might have to run to the restroom. Not much helps. A lesson learned – you all out there are not alone. I’m right there with you.
– Matthew
August 1, 2007
I was diagnosed with IBS when I was in my 20's. I am 44 now. My symptoms ranged from feeling my intestines jiggle around while processing food, to having sudden urges to void, to going several times a day, to uncontrollable flatulence. I am in the public relations field – on live TV, radio, public speaking, etc. To top it all off, both of my children weighed in at over 10 pounds at birth, which damaged my pelvic floor. Imagine the lack of control I have since I don't even have normal muscle tone to keep things in check. I have to be ever vigilant to be able to cover up unpleasant smells, get to a private area to recover from painful cramps, or get to a bathroom before an accident. No eating or drinking pattern seems to help. I drink water constantly and exercise regularly. I'm in the process of getting wonderful help, so I don't know where that will lead me, but my heart goes out to all who have to suffer through this very strange disorder. With all the modern breakthroughs in medicine, we can be hopeful help is on the way!– Dani
July 30, 2007
I am a 68 year old man and have had IBS for at least 18 years. It manifested for the first few years as diarrhea only, but starting in 2003 was accompanied by the most excruciating stomach pains. I knew when a severe attack was coming as I felt a little ill and weak for most of the day. Soon the cramps would start, usually in the evening, building up to the point where they would double me up with intense pain, lasting about 15 seconds. They would repeat about every 30 seconds and such periods would last for hours, accompanied by vomiting and diarrhea. The pains would slacken overnight and I would be prostrate for most of the next day, with a bloated stomach very tender to the touch. It would take three or four more days for the pain to disappear and normality to return. These episodes became fairly frequent in 2005, returning about once a month and I was at my wit's end as to how to obtain relief. Gradually they began to occur less frequently such that last year I only had two.
Last week I experienced a major attack again, the first this year and was it a doozer. It started last Friday and only today (Thursday) am I really back to normal. I sympathize with all of you who suffer from this wicked disease. Some have mentioned the difficulty of going anywhere for fear of an embarrassing incident. I can tell you I have had many such; one on the golf course with only shorts on, in the city far from a washroom. It is extremely unpleasant and I too feel safer at home.
There is a tendency to want not to go out at all, but I feel it is better to wear a pad and go out than to shelter from the world, which is not really living is it? I make use of an anti-diarrheal (loperamide) to help me when I am going to a theatre, but as many of you know, the relief is obtained at the expense of a build up of constipation, the release of which is unpredictable and which will always be followed by repeated diarrhea. So we pay the price for it. No doctor has suggested a cure and I am on my own.
– Ian
July 19, 2007
This is in reply to Janice's story (July 12, 2007 below). My heart went out to you as I read your story about your anxiety with your new job working with special needs children. I have worked in a school for 14 years now working with special needs, and have IBS with diarrhea. I love my job! I've had IBS for about 15 years, and over the years I have found the best way for me to deal with the need to use the bathroom more frequently that others is to be honest with the people you work directly with. You don't need to go into great detail, just let them know you may be needing restroom breaks throughout the day. I also talked with the school nurse, and she is soooooo supportive. If I cannot find a co-worker to give me a break, I walk my student to health services office and the nurse happily lets my student wait with her while I use the restroom. Just knowing that I have that support helps with the anxiety – panic – urgency cycle. Also, take good care of yourself. When I don't eat right, get enough sleep, or take time out for myself . . . things get tough – you know what I mean.
This past year at my job, has been the best as far as my IBS absences. With the support of school nurse, and a few wonderful co-workers, I was only home 'sick' once this past year! It really has made a difference for me to be able to confide in certain trusted people.
– Tess
July 23, 2007
I start a new job in the education field in a few weeks. I'm sick with panic over the fact that I may not be able to go to the bathroom. Over the past 18 years I've worked in a business environment where I could discreetly disappear. Now I'm going to have to ask someone to watch my kid ( I’m working with autistic children as an aide) and I'm just sick over it. I want to make this career change, I need to work where my passion is and reduce my stress, but yet I'm stressing myself out worrying about going to the bathroom. I can't be the only person at the school with IBS, but I don't know what to do. Do I tell everyone my first day there, or wait until I have a flare up? This is no way to live.
– Janice
July 12, 2007
I am from Wales and am 23. Been diagnosed with IBS within the last 3 weeks but think I've had it for about 2–3 years. I have had bad stomachs for years now but my doctor never explained why and said it could be excess acid in the stomach and gave me a neutralizer that didn't work. In the end I changed doctors and explained what I was feeling (burning sensation throughout my stomach and pain when eating, bad diarrhea and constantly sick), he diagnosed me with IBS. I have been advised to give up playing rugby but I really don't want to. I don't want to let IBS stop me from doing anything I do now if I can help it.
I find if I don't eat much then I don't get that bad with it. As soon as I eat then that’s when I get the urge for the toilet and stomach pains. I went out with some friends on the weekend and had to visit the loo/toilet 5–6 times during our 2 hour meal but I was adamant to enjoy and make the most of the evening with them. It was embarrassing explaining to them why I had to go to the toilet so much as I’d not seen them in a few years but they understood lucky for me.
The major problem I have is with work as I'm a plumber and going to the toilet in a customer’s house isn't pleasant but if I’ve got to go then I can't help it. I'm getting married next year and I'm wearing a kilt so I hope I don't get a bad day as that will be really embarrassing.
– Dean Cherrington
July 15, 2007
I was diagnosed in my early 20s with ‘spastic colon,’ which I believe now most doctors call IBS. My symptoms during that time were horrible and what I remember is that every Sunday I would be in the bathroom for 2 hours straight and would be so exhausted that I could not go out with my friends for fun in the evening. They eventually stopped calling.
I was able to manage it by diet and exercise for quite a while. I finally could eat and travel to the beach without worrying about where the nearest bathroom was, or what if I urgently had to go. Last winter I had caught every stomach virus going around and haven't been the same since. One doctor, who practices mostly alternative medicine (a rare thing where I come from), told me that my IBS got kicked up again and it would 'just take time” to get back to normal.
I'm not one to go back to the doctor but after reading others stories and looking at the wealth of information on this site, I'm making an appointment with my doctor today to see if there is something else I can be doing. Although personally I don't want to be on any medications for long-term, I do need some relief.
– Janice
July 12, 2007
Well here goes. Once again I am off work this week due to my 'problems.' Although IBS hasn’t been diagnosed just yet, it was too good to find this site and learn I am not alone! As everyone else seems to feel, my condition has awful affects on day to day life. It is affecting my work, my time with the children, and I feel so guilty as I am always 'short fused' due to being in so much pain. I have tried numerous treatments like others have said. But it just keeps me at home by the toilet! It’s the pain and the cramps that are unbearable; the nausea, and when nothing comes I feel scared to eat because it’s like, ‘Where is it all going coz it ain't coming out?’ I am so tired all the time and now I am off work. Sorry, but I'm fed up! This is not me, as I am normally so active and actually love the job I do. This site has helped, as I feel I am no longer alone. Thanks for reading.
– Name withheld by request
July 9, 2007
I have worked all my life and looked so forward to retirement with my husband; then IBS set in. It has just taken everything out of me. When I plan a trip, golfing, or just shopping with the girls, most all of the time I have to cancel. I follow my diet to the letter, take extra fiber every day and have read every piece of information on the Internet for help and nothing helps. I have been to several doctors and they say the same – there is nothing they can do. I just try to enjoy the good days I have and when a flare up occurs I know it will be lost days. I can not feel sorry for myself but I do feel sorry for my husband who puts up with me and having this problem all of the time.
– Name withheld by request
July 8, 2007
I am 17 years old, and I have had IBS for two years. It didn't get very bad until recently, when I missed the last two weeks of school due to frequent bowel movements and lack of energy. I've been trying to deal with it for quite some tim