Courageous Stories: New
I am going to be 50 years old next week and have had IBS for the last 5 years. I have pretty much given up hope of having any kind of normal life. If I don't have the runs then it is constipation. I have had every test possible and tried every drug on the market. I will get relief for a few weeks and then it starts all over again. I am in danger of losing my job (yet again) because of attendance issues. Sometimes the pain is so bad I just sit and rock and cry. I have tried food diaries, high fiber, low fiber and not eating at all. Nothing seems to work. All the doctors say is that it will not kill me. However that is scant comfort when financially and emotionally it gets worse and worse. My husband is very understanding but even he gets frustrated when I don't know what has triggered the latest attack. At least reading the stories here has let me know I am not alone. I do know this is not in my head. But I certainly hope they find something soon to help with this.
– Name withheld by request
June 18, 2008
I've been suffering from IBS for several years, I have been prescribed antispasmodic and anti-anxiety drugs, but they have not helped, I still have constant stomach and abdominal pain and lately I’ve been feeling nauseous almost all the time, I have been tested for Crohn’s and Celiac disease and everything comes back negative, I don't know what else to do because I’m always in pain and tired, I’m only 30 and have two very active kids. I don't want to be locked at home because I’m afraid to go anywhere. I honestly don't think it is IBS because my pains are all the time but I don't know what else to do.
– Name withheld by request
June 15, 2008
[Editor’s note: The degree and intensity of pain is an important determinant of the severity of IBS. A significant proportion of people with IBS report constant pain. For information on pain management, log on to our Learning Center Library. Go » ]
I am very young, 16 years old. I believe that I've had IBS all my life, and I feel that it’s getting worse now. It has been very embarrassing but I’m learning to deal with it. I’ve always felt like no one understands why I’m always so cranky. If they had to live with this they might understand. I'm thinking about being cyberschooled at home because it’s just so embarrassing, but that may ruin my future. I wonder all the time why I had to be picked to experience this. I just wish it would go away.
– Name withheld by request
June 15, 2008
I have just read some of the stories and I felt much better than before, knowing that there are a lot more people in the world who are having similar digestive disorders like me. I am only a 19 year old girl from Spain, and I started with this problems almost two years ago.
At the beginning I started not feeling well with some kinds of food, so I begun to be more careful with what I ate. However, instead of improving, my stomach got worst; I had a diarrhea every few days. I ended up last summer with an appendix operation because all my family thought that that was the reason for my diarrhea.
But when I began the university this year, everything was the same, or even worse, with even more frequent diarrhea. Now I have gotten to a point where I feel I don’t have enough energy to continue fighting. I have reduced the variety in my meals so much that I am fed up of always eating the same thing. Everybody I speak to says to me that it’s just the stress of exams that is the cause.
In my opinion, maybe the stress has something to do with it, but obviously my digestive system has something wrong too, and I wish to find some medicine soon.
I hope you understand my problem, because my friends always say, ‘poor you’, but in the end they don’t feel at all like I do. Thanks a lot to everyone who reads my story.
– Name withheld by request
June 12, 2008
I am 40 and have suffered with IBS since I was a pre-teen. It has been better and gotten worse at times. After the birth of my sons, I had more episodes. It is very tied to my hormones and going on a birth control pill that limits my menstrual cycle helped a lot. I am currently having many episodes due to the removal of my gall bladder. I have a job that I work at in different towns.
The best advice I can give is know your triggers like what you can eat and stick to it when you have to go out (just like a diabetic), surround yourself with supportive and understanding people that have your best interest in mind, and don't be afraid to use a public restroom. I am a "girly girl" and this took me years to get over, but I won't compromise my life or lifestyle over what other people may say about a physical condition. They wouldn't laugh or make fun of someone with cancer, epilepsy or any other aliment they can't control. So live your life, research your disorder and be strong.
– Name withheld by request
June 11, 2008
I am 30 years old, and I have suffered from IBS for as long as I can remember. When I was younger, even in college, it was manageable. It did not control my life. I would get IBS attacks but I would tell my close friends and they had my back.
Now that I am older, the IBS has gotten to the point where it controls me. I travel as little as possible. I turn down invitations for a social life because I don't want to get sick. Of course, worrying about getting sick usually makes me get sick. If I could only convince my mind to help my body! But generally, I get diarrhea two or three times a day, regardless of what I eat.
However, I have also learned that I can't NOT eat. I get weak and light-headed. My plans to just not eat all day so I can have a good time backfired.
Most people think I am exaggerating and don't get me. They actually get mad at me when I tell them my IBS is the reason that I can't go out. I have an apartment with 2 bathrooms even though I live alone because it relaxes me to know that one is always open.
It has also interfered with my relationship with men, needless to say. I always say I wish I could find a man with IBS and we could spend the rest of our days being sick together!
Hang in there, everyone, and don't be afraid to tell people about your IBS. Even if they don't understand, they usually won't make fun of you.
– AMS
June 10, 2008
I have been having problems for a few years and didn’t know what the problem was until recently, when my doctor referred me to a specialist. He found that I have been suffering from IBS and finally I feel like I can put a name to this awful monster that entered my life. Now the hard part is to find out the foods that trigger the bouts of diarrhea that hits at the worst times. I was told by this doctor to keep track of what I eat and to try and see what triggers it and what I can eat without problems. I was told that one size doesn’t fit all and that what causes it in one person doesn’t necessarily trigger it in another. I am so glad to see that I am not alone...Good luck to all and good health.
– Stephanie
June 5, 2008
[Editor’s note: Food or eating is just one of many triggers that can aggravate IBS symptoms. Use the IFFGD Daily Diary to help sort out your personal triggers. Go»]
I am a 38 year old woman, working in the big corporate world. I have been suffering (I use this term mildly) for over two years with social anxiety and now IBS. I am seriously considering quitting my job as the sudden spasms accompanied by severe pain are starting to impinge on my performance in the workplace. I cancel client lunches, avoid promotions, and travel as little as possible. But how much longer will the Execs put up with this?
I give many thanks to the Gastro specialist who spent over an hour with me in his office today, educating me on my condition that now has a name. It is specialists like him that give people like me hope.
– Name withheld by request
June 5, 2008
I am so glad that I came across this website and found so many other young people suffering from IBS as well, because I thought I was the only one! I am only 21 years old and have suffered since I was 15 or 16 years old. My junior year of high school, I missed 28 days of class due to intense abdominal pain, mixed with diarrhea or constipation. It just came right out of the blue and has persisted up until now, and it is getting worse.
I have missed out on so many events as well as important things due to the way I feel. I've had every diagnostic test in the book because no one could find anything really ‘wrong’ with me... colonoscopies, CAT scans, MRIs, upper endoscopes...you name the test, I've had it, and I'm so young. I've been given so many prescription meds I could open up my own pharmacy, yet none of them ever work!
The worst part is being told that ‘everything is in my head.’ People think I'm crazy because medical tests show nothing. My friends are getting irritated because I always say no when asked to go out, or sometimes when I'm out, I have to go home because I don't feel good. It's the most terrible thing ever, and I have missed out on so much because of it. The worst part is that none of my friends or family understand because they don't know what it's like to live like this. I hope that something can be done about this disorder because it has really prevented me from doing a lot of things, going a lot of places, and more. I am glad that there are other people out there who share my story and can relate!
– Natalie
June 2, 2008
Hi, I am a 22 year old college student, my symptoms of IBS became very strong when I was 17. I had stomach pains so bad that I stayed up crying at night in my mothers arms. I was finally diagnosed with IBS and have been struggling with it since then.
I have been to may different doctors- all of them have suggested different diet techniques. I have come to believe that with IBS, there is not just one diet that works for everyone, you have to explore different foods. Its hard because before I had IBS I loved to try new foods, now I have found that most of the time new foods upset my stomach and I am forced to choose plainer foods – which I don’t mind because in the end I feel great. What’s hard is to look at other people who are free to do, eat and drink whatever they want, while we are here struggling not to be bloated or in my case (constipation) pass a movement. Honestly, I don’t think I would be as positive as I am today without telling people about it. If someone asks what is wrong, I tell them what is going on with my stomach and how I have IBS. You would be surprised with how many people can relate to it!! Also, if they have experienced something like it, their solutions may help you out.
My now husband, has been by my side for 3 years now! He is the one that has to help me with the medicines. He is amazing, he sits next to me when I am in the bathroom, and starts a casual conversation to get my mind off things. His support is endless!
I have found that by reading a book, or even bringing my laptop to the bathroom to concentrate on has been a significant help. Sometimes my muscles contract at the wrong times preventing my bowel movement from taking place. When concentrating on other things, my muscles relax and that helps.
I guess why I am writing is because I was overwhelmed by the amount of people who are afraid to talk about it. DONT BE! I'm not going to say that some people aren’t going to be grossed out about it... but we have what we have. And I’ve found that those who are closest to me understand and appreciate my honesty.
– Jennifer
June 2, 2008
I started having gas and indigestion problems soon after high school graduation (1959). I remember being at a formal dance and I had awful gas cramps. I was wearing a tight fitting formal dress and all I wanted to do was go home and get out of that dress. I've had intestinal problems off and on all my life. For many years I had heartburn which increased as I got older. I now take a PPI, which has solved that problem. However, I suffer from violent gas cramps, bloating and intestinal pain at some level nearly every day of my life. Sometimes it's really bad, for instance, it will start up just as I'm going to bed and I'll be unable to sleep all night. I tend toward the constipation end of IBS, although I don't every get seriously tied up. I had a colonoscopy about two years ago which came out normal. So I was told I have IBS. I was sent off with nothing more.
What's really frustrating is that I cannot see any pattern. I can't connect a violent gas attack with any particular food. When I have a bowel movement, I feel temporary relief. That means for about 5 minutes. My bowels can be fine, but I'll still have this awful gas and pain problem. I can't burp it up and I cannot expel it. I try to go about my business as normal, but sometimes I have to lie down with a hot pack on my stomach. I've been invited to visit relatives in other states, but I don't go because I think, what if I have a big gas and pain episode, the kind that goes on for days and days. I'm embarrassed to tell people I have such a physical issue, so I make up excuses. I live alone. I retired last year and I'm basically healthy. I exercise a lot; I swim, power walk, ride a bike and do dance aerobics. I get some relief from exercising and I'm slender. I do a lot of drawing and painting but sometimes I can't get into artwork, because I'm so uncomfortable. This really bothers me because my dream about retirement was to get back into painting full time.
I don't know where to get help. I've read about all the foods that cause gas and it seems like everything does. I can't live on fats and proteins. It seems like doctors don't much care. They get their fee for the colonoscopy, but offer nothing else. You go off with no solution. I'm a pretty upbeat person, look on the positive side of things most of the time. But there are times when I lay in bed and cry because it's 3:30 a.m., I'm so tired, yet I cannot sleep because I have cramps. No one knows this, I've never even told my internist. I wish I could find a doctor or other professional who could help me figure out a diet that might help. I normally eat a low-fat diet with emphasis on fruits, vegetables and whole grains. If I tried to eliminate foods that produce gas, I'd starve. I'm 66 years old. Medical science has conquered Polio, Pneumonia, T.B.; great strides have been made with AIDS; successful organ transplants are commonplace; cataract surgery is a breeze... and so forth. But I have been suffering with this chronic problem since 1960, that's about 48 years, and here I still am, my enjoyment of life blunted. One more thing: I had chemo for breast cancer in 2005. While I didn't become actively ill from it, my stomach was in an uproar. I felt like I had gas in my face! It seems that ever since then, the episodes of cramps and bloating have been more frequent. It's a lonely experience.
– Name withheld by request
May 27, 2008
I am a little over 50 and was diagnosed with IBS when I was only 19 years old. I have lived with this condition for years, and don't really know what my exact triggers are. I have medication that I take that is the equivalent of the GI cocktails I used to get in the ER's. I don't take it all the time, just when the IBS starts. I get really gassy, bloated, and have a lot of pain. Sometimes it is so bad I don't make it to the bathroom. I do have to watch what plans I make, and I always check in advance (even when I go shopping) where the bathrooms are. I have a change of clothes with me if I am not near a bathroom. It has been this way for me for years.
I have had numerous endoscopies done, and the only thing I have been told is that my lining is ‘irritated’. Tell me something I don't know. The pain is awful, too. It feels like labor contractions, and sometimes I double over it is so bad. I don't take pain medications, but I do take I do take one that helps to reduce the painful spasms. I use simethicone quite a bit to reduce the flatulence, as that can be very embarrassing. I hate having to call off work, or leave work due to my condition, as that is embarrassing as well.
I do know that when I eat a lot of fiber, which I was told is supposed to help, it has the opposite effect on me. I try to stay away from fiber and wheat, fruits, cabbage, beans, onions, greasy/spicy foods, etc, as I know from my experience that these items don't help. Also no sodas, no juices, no milk. No alcohol! Just plain water.
Usually I don't eat during my episodes, but if I do, I limit it to a ‘BRAT’ diet: Bananas, Rice, Applesauce and Toast. No butter, just plain. I gradually ease back into my ‘normal’ diet after a couple of days of relief.
Hopefully my suggestions will help someone else who is having this problem.
– Name withheld by request
May 27, 2008
Hi , my IBS has been with me since the age of 16, I'm 51 now. I have been to several doctors, had all kinds of tests done, and not one could tell me how to treat it . My Mom also has it and so does my daughter who is 32.
The pain is so severe that I would have to take a pillow with me to keep my neighbors or family from hearing the moaning and from passing out from the pain and hitting the sink or the tile floor! After an hour of that I would be as white as a ghost, my clothes so wet from the sweating, and I was tired and exhausted . I just found out after years that there may be a way for me to eat for my IBS. I am looking for a list of foods that don't trigger IBS.
– Name withheld by request
May 26, 2008
I was diagnosed with IBS 15 years ago. I just couldn't believe that my symptoms weren't something else – I was in so much discomfort. I was frustrated with the doctors just turning a blind eye to what I was feeling. Every few years I convince my family doctor to conduct further tests just to make sure... yup... still IBS. Is IBS a catchall for digestive woes? My brother also suffers from IBS but his symptoms and food triggers are different from mine. He suffers from no bloating, where I always look like I am 6 months pregnant. I noticed that someone put down that they have cut out wheat products. I believe this to be one of my triggers as well. But no doubt about it, my worst trigger is stress. Stress and IBS seem to have the same amount of impact when begging for help: No one understands or respects what it feels like and I have found nothing that can be done to take away the pain of both! I believe I suffered from IBS in my teens. I am frustrated that I have spent 15 years trying to find ways to manage my IBS – I think I have and then the symptoms change and I start fresh. I am still in my 30's and can only hope and pray that I can find a way to manage my symptoms soon or researchers discover why so many of us have to suffer and hide.
– Name withheld by request
May 26, 2008
I hate IBS. I'm glad to know that others know how it feels, because I feel like such an idiot when I get immense pain and everyone thinks I'm exaggerating. I've had IBS since I was about six, I think, and I'm almost fifteen now. I don't go to the bathroom for about three days, sometimes more. Then I start to get the worst pain ... I always pray that I'll faint or something, just to drop the pain away. I was free of symptoms for about one month a while ago, and then I went on a trip to D.C. Ever since then, the flare-ups are more constant. Last week I had the pain and I got so aggravated that I drank a laxative tea. Big mistake. I needed it, but it caused the pain to worsen throughout the night and I ended up going to the bathroom about seven times that day. Horrible. I lost a significant and noticeable amount of weight. At this moment, I'm enduring the pain. I have to go to work soon and suffer through it with a fake smile. I despise IBS. It's sad that so many people have go through it, but I'm glad to know that I'm not alone. Ow!!
– Name withheld by request
May 24, 2008
I have suffered with IBS for a number of years prior to being diagnosed. The most distressing thing for me is incontinence and the ensuing depression which this evokes. I have given up well paid jobs because of it and have suffered a severe loss of social life.
It seems that my whole life is dominated by my bowel to the extent that some days I am afraid to leave the house. I have encountered severe incontinence where my bowel has evacuated itself in the street, in my car and once in a store when we were on holiday in America. I get none or very little warning. There is absolutely no control over it, I can only try to reach a toilet, which isn't always successful.
The other type of incontinence is where my bowel releases smaller amounts of stool frequently throughout the day without my realizing it is happening. This again results in me being afraid to leave the house and I get very down at constantly having to clean myself, wash my underwear and shower only for it to happen again a short time later. I am becoming more and more desperate and am at my wits end with it all.
– Name withheld by request
May 21, 2008
I was originally diagnosed with IBS about 15 years ago but I believe it has been with me all my life. From as far back as I can remember I have suffered from stomach problems. I am also lactose intolerant, which adds another factor to the drama. I have tried different prescription drugs and have changed my diet many times over the years but nothing seems to really work effectively. I lost about 75 pounds in a year and a half because I decided the best way to treat my symptoms was by not eating. My family thought I was on drugs and tried to have an intervention until I fully explained to them my life on a daily basis. Bloating, cramping, diarrhea, constipation, spasms so bad I cannot stand up… I had an episode so bad last year I had to go to the emergency room. My whole life revolves around my IBS. I am sitting here now writing this story and I want to cry because my stomach is hurting really bad and there is nothing I can do about it. Depressed does not even begin to cover my feelings right now.
– Keisha
May 21, 2008
After reading through some of the stories, I am realizing I guess my doctor is right with IBS. I just have so much pain that I keep wanting them to find something that can be curable. My doctor wants me to have another test, a barium swallow, to make sure my stomach is not herniated.
I used to have severe constipation, probably was lucky if I could go to the bathroom once a week. I started on the tegaserod and when it went off the market I started on lubiprostone. I guess you are supposed to take it twice a day, but right now I take it only once a day. I have to have the right time to try to take it in the morning so it won't interfere with work.
Since taking the lubiprostone, I can have a bowel movement every day. My problem is the swelling and upper abdominal pain and distention. It seems that everyone talks about lower pain... my is upper... so is that IBS? [Editor’s Note: The pain or discomfort of IBS can occur anywhere in the abdomen.]
I am so tired of the pain and not wanting to go anywhere because of bloating and soreness. I can hardly stand to touch my upper right abdominal area. It is extremely tender. The pain never goes away.
Finding out that there is really no cure and the stories that everyone goes through has not helped me... it only makes me feel it is hopeless.
– Name withheld by request
May 19, 2008
[Editor’s Note: There are virtually no diseases that have a ‘cure.’ The only drug that cures a condition is an antibiotic for an infection (and even this is being challenged by resistant strains of bacteria). Fortunately, many diseases are short term and resolve on their own like the common cold or the flu. But in chronic conditions symptoms persist. There are many different chronic conditions that between them affect all systems of the body. Treatments, whether drug or otherwise, are aimed at reducing symptoms. There are a lot of contributing factors to IBS. It takes time and research by each individual to figure out what does and does not help, hurt, and work best for their IBS. It’s not hopeless, but help is needed. Remember, you can call IFFGD toll-free (in the U.S.) at 1-888-964-2001 (outside the U.S. 1-414-964-1799) and talk to any of the caring people here who will try to offer useful guidance.]
I've been following this site for several months and have decided to share my IBS journey. I am in my 60's and my IBS symptoms started in my early 30's. It has steadily progressed over the years and pretty much controls my life now. I've seen many doctors over the years and feel I have a very good Gastroenterologist now. But, there is just so much he can do.
All of your experiences are ones I have gone through at some time during the past 30 years. I've had all the tests and medications to treat it without very good results. I have also had several bouts of diverticulitis which sets me back in getting my life together again. Four months ago my doctor suggested trying a probiotic. I had tried other ones before but finally found one which worked really well. Then after six weeks I fell and broke my leg and the trauma set my colon off to where now seven weeks later I cannot get to feeling good again. The constant discomfort, nausea, and changes in bowel movement and some bleeding has me worried that something else is going on. The doctor says it is just bad IBS and I should take what I need to get through is.
I too am waiting for someone to come up with something new to help with this terrible condition. My husband of 48 years is very understanding but very healthy and this also affects him because of my frequent down time. It's become a regular quick stop when we get into the car to go somewhere. For some reason it triggers my bowels and we don't get very far before I have to find the nearest bathroom. I have emailed this site to my four sons so they can read that ‘mom's’ not exaggerating her symptoms and it is a tough thing to live with. My prayers to all of you that there is something on the horizon to help us cope better.
– Judy
May 18, 2008
[Editor’s Note: Much more needs to be done to move IBS research forward. IFFGD has drafted the IBS Research and Treatment Act; we are currently seeking support from members of the U.S. Congress to introduce the Act as a Bill and move it through the legislative process. Success with the Bill will mean 1) expanding the IBS research portfolio at the National Institutes of Health (NIH), 2) developing centers to conduct research and train health care providers on IBS, and 3) facilitating improved public awareness and professional understanding of IBS. We must also work to ensure adequate funding for NIH. You each can help move this process forward! It will only happen with public support. Find out how you can do something to help. Go» ]