Courageous Stories

IBS in real life

Share your experience of living with irritable bowel syndrome (IBS) – it can be therapeutic for you as well as others who suffer. Share your story.

Daily Living

Each person living with IBS must handle situations in their own way. Sharing personal accounts of living and dealing with symptoms may help others find new ways of managing the daily challenges.

I would like to reach out with some encouragement for the many people who have shared their stories. I have been an IBS sufferer for 38 years. Through the support of my physician and my stress management doctor who specializes in cognitive behavioral therapy I have wonderful resources that have helped me learn how to live with it and how to handle major flare ups. Yes, it can be a vicious cycle linked with stress, but help is available. What has been huge for me is that IBS is finally coming out of the closet and getting recognition for the valid medical disorder that it is. Until recently the shame of IBS was incredibly overwhelming for me. Now that its recognized by the general public that so many people have it, some of the stigma has been removed. I encourage everyone to be proactive with your physician and with finding psych support. Together they can be very effective. Give yourself a pat on the back for battling IBS and advocate for studies and increased treatment options. I'm working on accepting that I have IBS and deal with it to the best of my ability, and that everyone else will accept that too. Society doesn't condemn people struggling with diabetes, high blood pressure, etc. - this condition is no different and the social stigma is going away. Try to stay positive and surround yourself with positive people who understand your situation - and be ok with what your limitations are. Sometimes I just have to turn it all over to a higher power, when I'm feeling overwhelmed, and somehow its always worked out. We're stronger than we think.

– Julia
^{January 16, 2010}

I am a 61 year old male and have had to deal with IBS-D for about 15 years. My first episode was at a football game and I didn't make it to the bathroom in time. Very embarrassing and traumatic. I thought ‘What just happened?’ Since then I have had other episodes while traveling that have either been disasters or close calls. Anxiety plays a big role in triggering episodes. I worry about having an accident which causes more anxiety which causes more accident potential– classic with the syndrome!

I have learned to avoid certain foods and beverages but do occasionally fall off the wagon. Anti-diarrheals and anti-anxiety meds in small doses has helped. Mostly, I scope out the nearest bathrooms and let the chips fall where they may (sorry!! haha!). I love golf and always use the course restrooms whether I need them at the time or not just to be on the safe side. I am up front with my golfing buddies and they understand when I need to rush ahead to the next ‘hole’. Airplane travel is really tough when the light comes on to stay in your seat and you really, really need to go. More than once I have been ‘that guy’ who gets up and rushes down the aisle. My biggest fear is having an accident on a plane or bus while touring. It has restricted my travel plans but my wife has the patience of Job and is very helpful in getting me through the tough times. It helps to write about it. Thanks for listening.

– Name withheld by request
^{August 20, 2009}

At the beginning of this year, 2009, I was diagnosed with IBS. The problem had, looking back, been coming on for two years prior. What a bummer – no pun intended. I must daily consider: What, how much, the mix of, food and drink I put into my belly. Unfair, say I, a seventy-four year old male who has enjoyed any plate or drink placed before him. Recently I had to purchase a protector for the bed as I have had 'accidents' in the past and do a fair amount of traveling. There is a site out there that will tell you where to find public toilets on this Continent and others -- probably great if you are near one such.

I have learned from speaking about IBS to friends and relatives (who I did not know suffered from IBS) that we all seem to be different as to just what sets of our IBS: What we ingest, the time period between onset and finish; the 'kind' of stool produced; mucous or no – a host of differences between us. I am slowly learning, I think, what I can eat and not eat (and drink) to best help in an understanding of ‘MY’ problem.

I kept a diary for some months of everything that I ate or drank, the times, and the outcome. I changed my drinking and eating habits. I learned not to fill my stomach but take smaller bits and pieces over the course of a day. I chew my food well; drink lots of water. I have been prescribed anti-anxiety pills. I take a pill off and on if I think there is something coming up which might stress me. I find cooked white rice both filling and non-irritating to my gut. When I fail to look after myself (thinking I am back to ‘normal’) and the symptoms of IBS come charging back, I go to the freezer and begin to microwave rice that is always prepared.

– Name withheld by request
^{June 13, 2009}  

I was diagnosed with IBS in 2004 when I was in graduate school. I was glad to finally have a diagnosis but when the doctor told me nothing could be done about it except be given drugs for pain I was completely stupefied. I was given several different drugs over a month, but couldn't function at all normally because of side effects. I was completely unsatisfied and frustrated. I don't want drugs for pain, I want a cure or something that will reduce the occurrence of symptoms. I have found out over time that stress and certain foods are triggers for me.

I started seeing a nutritionist who gave me a lengthy symptom questionnaire to fill out before my first appointment. It had questions pertaining to every major system in the body. I was interested and hopeful. She altered my diet and suggested I take several supplements. The diet has been difficult to say the least, but I am determined to try to take as much control over my sickness as possible. It helps me physically and psychologically. I have learned how to cook through this whole experience and am grateful for that and for having reduced symptoms.

I also started seeing a therapist who has helped me deal with stress of daily life better and has helped me reduce my anxiety. She has given me perspective of my anxiety and life.

It is incredibly disheartening to know that I can't do everything I want to do, but I am thankful for what I am able to do. I've decided to continue on my diet, take my supplements, do yoga and meditation, and work on dealing with my stress. They are the best tools I have to try to feel better and have a “normal” life. I am forever grateful for the help my nutritionist and therapist have given me.

– Elizabeth
^{September 1, 2008}

 

College life

Many college-age students have written us about how disruptive to college life it is to suffer from a functional GI disorder. But some people find clever ways to manage their disorder and still enjoy and excel at school. If you are a college student with a functional GI disorder, we'd love to hear from you. Tell us what special strategies or tips have helped you:

• How do you talk to dorm or roommates about your bathroom needs?

• How do you talk to professors when your disorder makes you miss a class or test?

• What's the best way to organize your morning, to help you get to class on time?

• What tricks allow you to juggle classes on different parts of campus?

• How can you participate in social activities while still avoiding triggers that can cause a flare-up?

Share your tips with us now!

I never knew so many people were affected by IBS. To think that all this time I thought I was a lone sufferer. Always feeling like I was alone and nobody understood me. Boy, was I wrong.

I started noticing my symptoms when I was about 12. I thought that everybody experienced what I did. But as I got older, the symptoms got worse. I finally asked my doctor about it when I was 14. He rather quickly concluded that I have IBS. I thought he was just giving me an answer so I would get off his back. But as I come to research more about IBS, he was right on.

I am the type of person that stresses about anything and everything... especially school. I keep my grades up towards the 4.0 area, and strive to do better. This determination makes my life a living hell because of IBS. Before an exam, or a paper/project is due, I get what I like to call an "IBS attack". Within these attacks I experience shaking, profuse sweating... to the point where I have to take off all my clothing, crying, cramping, and the rest of the works. During these episodes I wish that I wasn’t alive. I feel like experiencing one of these attacks isn’t worth living.

Unfortunately, these attacks don’t come only before tests and papers are due. They occur before I go out with my friends for the night, before I go on vacation, or anything that is not just staying home. If I have big plans to go out and do something, IBS restrains me and forces me to stay home until I finish passing a bowel movement.

IBS is my living hell. I hate it so much. I just don’t understand why something so horrible does not have a cure. I feel like nobody knows about it or cares about it and sees it as a simple complication that is manageable. Well, it’s simply not manageable. Something needs to be done to fix this horrible life that everyone on this website is enduring.

– Jenny
^{November 15, 2009}

I have had IBS since I was an infant. My dad has IBS and so does my first cousin. I really think it’s hereditary. Well now I’m a junior in college and it’s difficult but I refuse to let it get in the way of my everyday life. I guess it does to a certain extent. When reading all these stories I realize my situation is usually not as bad as others, although at times it has been.

It was way worse when I was younger. I didn't want to go to the bathroom because it hurt so much. As a result I always ignored the urge to go and before you know it two or three months had passed by. Yes, I would go two and three months without using the bathroom when I was younger. My system would be so backed up I had to spend a week in a children’s hospital. My mother didn't know what was wrong with me. I was depressed, it hurt to sit down, stand up and I didn’t want to eat. The hospital had to help regulate my system. After a week I was released and put on fiber, prune juice, and prunes but none of it helped.

Today, I still don’t have a remedy but I just have to remind myself every week that I need to go to the bathroom even if I don't have a urge. I really never have an urge because I resisted it when I was younger so I don't get it at all. However, even when I use the bathroom frequently it still sometimes hurts really, really badly to the point where I'm almost in tears. When I get to this point I usually do a mineral oil that my doctor prescribed to take only if I know I need assistance.

None of my friends know about this because it’s just too embarrassing to say. I wish there was cure but looks like I’m going to be dealing with this a long time. There is hope – mine has gotten so much better over the years. I just have to stay on top of it and don't let it progress or get out of control.

– Name withheld by request
^{December 22, 2008}

I'm so glad I found this site. It's nice to see people, especially young people, who suffer from IBS.

I was told I had IBS when I was 15, but my pediatrician thinks I have had it since I was 3–5. My mother agrees saying I constantly had constipation and complained of pain in my stomach. When I was in 3rd grade I was miserable. I was told that it was 'all in my head'. So, I lived for 7 years thinking I was crazy. I thought I was a hypochondriac. The summer before my junior year I got really sick. The whole month of September I lost 30 pounds because I couldn't eat. I was fainting and just so sickly. My parents were so scared, and finally my dad said he wasn't taking it anymore and was going to find the answer. I went to doctor after doctor, which between being sick and going to the doctor I missed 30 days of school. Luckily, because of doctor notes and my being able to keep straight A's, I passed. I had tests done and blood taken. Finally they sent to children's hospital where I was diagnosed with IBS.

I am now a freshman in college. Every day I question if maybe I should go to the sister branch of my college, which would allow me to live at home until I was older and able to get an apartment on campus instead of dorm life. My first semester sucked. I constantly worried about how my condition would be that day. I missed so many classes because of pain and because of nausea keeping me up till my alarm went off. I went from a straight A student in HS to failing all my classes and being put on academic probation. I so badly want to be at home, just until I figure out what works for me, but I feel so embarrassed because my family (not immediate) will think I just couldn't do it. I already heard they think I won't finish just because I'm so shy.

Social-wise college sucks too. I can't be a normal college student. While everybody is bonding over late night pizza, pop and even booze. I am sitting in my room fighting off nausea and gas. I feel so alone because I can't do those things and I never will be able to.

My boyfriend is really great about my IBS but I fear one day he will just get tired of it. I understand why, but if he just understood what I go through. I hate that IBS runs my life as much as it does.

I am on my winter break and I don't want to go back to college… at least not back to my dorm. I hate the fact that I hate college. I want to love college but I can't – at least not while I live the dorm life, sharing bathrooms with complete strangers.

– Chantell
^{December 12, 2008}

I'm 22 and trying to finish up college. I was diagnosed with IBS a few months ago when I was finally fed up with it and went to the doctor. I was looking forward to a solution: a simple medication and it would go away... but it doesn't seem like that happens. My doctor prescribed an antispasmodic but it only seems to delay problems for a few days. Your stories have made me more wary as it's becoming more evident this really never ends.

I can relate to many of your college stories. I used to enjoy going to the bar with friends. I've tried to continue going. I hold a beer in my hand or get a Coke and tell people it's Coke and Rum. It's quickly become unappealing staying out late and watching others get drunk. I try to at least make an appearance and be ‘social’ but it's hard when friends pressure you to take shots. I haven't figured out how to fake that one yet.

My memory has been decreasing fast. It takes me a few minutes to recall a week ago, and 3 weeks... Forget it! Concentrating and memorizing course work is way more difficult than it should be. Does anyone else have these problems? I looked at symptoms lists and don’t find memory loss related to IBS.

I’ve lost weight and look anorexic. We had a close family death over a year ago and I dread people thinking I now have an eating disorder as result.

I wish IBS had another name, such as Constant Stomach Conditions. It's not an easy name to bring up and I've only told one person that's what I have. I'm pretty sure my boyfriend questions me when I say I'm not feeling well. His mom complains about her back a lot and overemphasizes that it prevents her from doing things, so it's easy to see how he relates my complaints to hers. I don't really tell him about it anymore. Everyday is just fine as far as he knows, because he doesn't get it.

Does all this get better at all?

– Name withheld by request
^{May 6, 2008} 

[Editor’s note: While not diagnostic symptoms of IBS, other non-GI symptoms are sometimes reported by IBS sufferers. Examples include difficulty concentrating, sleep disturbances, muscle pain, or fatigue. Unexplained weight loss is not a symptom of IBS and may signal something else. But if eating seems to aggravate symptoms, altering eating habits in response may explain weight change. Many factors contribute to IBS symptoms, and vary from person to person. It takes time to sort this all out and a physician should help. If symptoms persist after initial treatment, let you doctor know. Visit our web page for help about ways to work with your doctor.] 

 

 

The need for understanding

Richard Feynman, a Nobel Prize winning physicist and educator once said, “I learned very early the difference between knowing the name of something and knowing something.”  A 2004 national survey conducted by IFFGD found that of those who had heard of “irritable bowel syndrome” only 17% indicated they understood what it means. Despite a dramatic increase over the past decade of scientific knowledge about IBS, many people struggle to find adequate care. Mistaken notions continue, some perpetuated when overlooking how painful the disorder can be.  

Most of my life I have suffered from nausea. When I was a child I went to the doctor all the time with this issue and all he could come up with was 'Food allergies' I can't complain because they really didn't know much about stomach issues back then, and he really was trying to help. After years of nothing we gave up. After I got married, one day my husband walked into the bedroom and I was passed out on the floor. When I came to, he asked what had happened, I told him that my nausea sometimes gets so bad that I get light headed, sweaty, and dizzy. That was the end of giving up! We went to a gastroenterologist and he thought it was 'in my head,' so we never went back to him. We found another but he was so busy doing OTHER things in the exam room that I told him there was a monkey in my stomach to see what he would say - he just responded with an 'I see'! Needless to say, I walked out. Finally, I found a great doctor!! Not only has he found ALL my issues, but he make me feel comfortable talking about things females HATE to talk about. Stomach problems are laughed at by some doctors so PLEASE be careful who you choose, bring a symptom list with you and try to make eye contact if possible. If the doctor interrupts you then you can be pretty sure he's not listening. Good luck all!

– Katie
^{April 8, 2009}  

I am 24 years old and I have had IBS since I was 6 years old. I have problems with diarrhea and major cramps. I have been scared to leave my house and I don’t go very far from home, due to the worry of the IBS acting up. I have been taking loperamide almost everyday. I understand with others that it is very embarrassing. I hate having to go to the bathroom 4-5 times in a public restroom. I get very stressed and worried what others may think of me. Or if they are laughing at me. I also don’t travel far from home either. My husband gets mad when I don’t like going out with him due to all the bathroom trips. He will make fun of me, so I don’t think he understands how painful it is for me to go to the bathroom. And more so in a public bathroom. I wish there was a cure for this. I have lost many jobs due to it and I have two kids to raise. I hate having it so much. If anyone has any suggestions please share your stories.

– Melissa
^{January 13, 2009}  

 

Self-diagnosis

There is an excess of health-related information available on the Internet. Some is downright wrong. But even accurate information can be subject to interpretation and wrong conclusions can be drawn. Never self-diagnose an illness that may be as serious and life-altering as IBS. Not only might your self-diagnosis be wrong, but other diseases can co-exist with IBS that a doctor can identify. If you suspect you have IBS, see a doctor. Try not to feel embarrassed – bowel symptoms are among the most common that doctors see. There are strategies for managing IBS that may improve your symptoms and help you feel better. Start with an accurate diagnosis; work with a knowledgeable doctor who listens and cares about your concerns, and who works with you to help find a treatment plan aimed at your needs. For more guidance, see Fact Sheet #185, Talking to Your Doctor About IBS.

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 have suffered with undiagnosed gastrointestinal and bowel problems for 31 years. It impacted everything I did and greatly affected my years as a young adult. I finally decided that I would seriously try to uncover the problem because no one else seemed to be able to do that for me. I took margarine (not butter) totally out of my diet for about ten days. I also had myself on a very restrictive diet. As I added back food I noticed that as long as I stayed away from margarine, I had great improvement in my digestive tract. I would say that I feel 75% to 80% better. I don't use margarine at all now. I also avoid using corn oil and those of "lesser" quality. I do use butter, but I'm careful to not have too much. Because I don't use margarine and the "lesser" forms of oil at home, my system can handle the products I consume outside the home. I was truly amazed that eliminating margarine, corn oil, etc. from my diet would have this impact on me. I guess that I'm either allergic to those foods or I have an intolerance for them. Hope this helps someone.

[Editor's Note: Fatty foods take longer to leave the stomach than other foods. Meals that are too large or high in fat may provoke symptoms of abdominal cramps and diarrhea, and IBS sufferers do often find that reducing fats in the diet may help with symptoms. However, other disorders can also cause difficulty digesting fats, including liver disease and gallbladder disease. You should always consult with your doctor when making dietary changes.]

– Name withheld by request
^{February 2, 2008}

 

Stress

It is helpful to understand stress in IBS as a disturbance in the body – not as a psychological event. The factors that produce stress can be physical, biological, environmental, or psychological. Any of these can activate the central stress system in a person. The central stress system involves the release of chemicals in the brain (such as CRF, corticotropin releasing factor), which in turn affect a biological response that alters the way the brain and the gut interact. This altered brain-gut interaction can result in worsening of IBS symptoms. A viscous cycle can be triggered; pain and discomfort may lead to fear of symptoms, which then activate a stress response that alters brain-gut interactions, which may lead again to pain and discomfort. When this is happening, breaking the cycle can help relieve symptoms.

I was diagnosed with IBS when I was 22 years old. However, after my diagnosis, my doctor wasn’t able to help me treat my symptoms, which fortunately only occurred a few times a year. I went two years trying to treat myself with moderate success. I finally sought professional treatment after suffering daily symptoms while on deployment in Iraq. Apparently the increased stress I was experiencing was taking its toll on my intestines. I was put on a mild antidepressant and a stool softener. Both helped within a week. The only problems I still encounter happen when I lapse in my diet and eat too much dairy. I also found that I can’t take the antispasmodics with the antidepressant so I'm still searching for help with abdominal cramps. For now I'm just trying to find a way to live with my stress while in Iraq while looking to the future when I'll be in more control of my surroundings and diet.

– Name withheld by request
^{July 20, 2008}

Thank you to everyone who has shared their stories! The parallels, such as doctors' responses, food triggers, social situations, etc., are amazing. I am a 39 year old female who was diagnosed with IBS when I was in college. However, I think I have had it most of my life.

When Zelnorm® came out, I found relief through that. However, it was not perfect. I still got flare-ups, especially around menstruation. I did a little research on myself and discovered that when there is a change in my hormones during menstruation or around ovulation, my IBS acts up. About a year ago, I ended up in the emergency room due to severe pain. The only thing the doctor did was prescribe a painkiller. The interesting fact was that the painkiller could upset the stomach. Therefore, I chose not to take it. I let the pain subside naturally. After that incident, I told myself that I had enough. I would continue research on my own.

I am not a doctor, but I understand that there is a relationship between the central nervous system, serotonin and hormones. I decided to try an alternative/complimentary method to relieve pressure on the nervous system. This and stomach/back exercises have helped greatly. I am not 100% and still have flare-ups periodically, but at least I can write that flare-ups are occasional now and the pain is more tolerable. I am no longer on the Zelnorm, since that was recalled, but I don't feel that I need it regularly anymore either.

– Name withheld by request
^{January 2, 2008}

 

Control

Managing IBS and other bowel disorders often means confronting issues of uncertainty, loss, and control. While you may not always be able to control your symptoms, you may find ways to control how you manage them.

I have suffered from IBS symptoms since my late 20s, but did not get a medical diagnosis until 40 years old. My 19 year old daughter is a sufferer as well. IBS consumes my life, as the effects cause daily problems either with constipation, bloating, loose bowels or fatigue. I was diagnosed with anxiety w/ panic in 2003, which I feel added to the occurrence of symptoms. I did find relief with a digestive enzyme with probiotics. If taken daily, it minimizes my pain and loose bowel episodes. Using the supplement is expensive and annoying. I hate IBS and further hate that now my daughter has it. I know basically how to manage but have not yet developed the stamina to embrace it and change my eating, behaviors, stress, or life to manage the symptoms. I am otherwise a healthy, young 42 year old working mother of a 19, 17 and 13 year old. Can you relate?

– Sandy
^{September 17, 2009}

I've had problems my entire life, from maybe the age of about 4 on, but no one knew what was wrong with me. My mom would either be force feeding me bismuth or senna - depending on which end of the spectrum my bowels were - and most doctors either labeled me a perfectionist who was too hard on herself, or a hypochondriac.

After losing 60 pounds in a month in my mid-twenties, I was diagnosed with an unspecified IBD with markings of both Crohn's and colitis and put on a cocktail of medications. Nothing really helped though until a doctor told me what I had, even if unspecified, would be with me the rest of my life. There would be no medication or surgery to make it go away, it just was, so I might as well shake hands and make friends with it and learn how to live together.

I was 32 when told this and for the last 15 years I've worked very hard at doing just that. I've stopped letting these problems get in the way of my life. I even traveled to sub-Sahara Africa in 2005 with no trip altering problems. Some diarrhea, mostly at night, but everything manageable.

I've also changed my diet to include a lot of fresh fruits and vegetables, little red meat, mostly chicken and fish, and only skim milk. I exercise daily and along with some medications - a PPI and SSRI - I also take probiotics. I try to stay away from anti-diarrheal medications as I found when they wore off they were worse than just living through the symptoms.

Recently my symptoms were re-evaluated and I was given a definitive IBS diagnosis. Having IBS as a diagnosis makes more sense. It now explains the unexplained items with the IBD such as why I gain weight, or don't have low blood counts, or haven't gotten worse with age.

But I owe a whole lot to that doctor who told me to make friends with my condition. Before then I let it hold me back a lot, afraid to get too far from a bathroom, or go someplace different because even the ice cubes of different water in a drink could set me off. I found that when I relaxed, let go of the thought this would go away, and learned to listen to my body and live with what was happening instead of trying to predict it, over medicate it, or fight it, I felt so much better.

– Shari
^{July 29, 2009}

I have suffered from IBS for 20 years. It started with daily diarrhea, very painful and urgent. I visited several doctors until I was diagnosed with IBS. I usually have all kinds of symptoms, mixed or not: cramps, incontinence, gas, pain, and they get MUCH worse during menstruation. The symptoms come and go, I never know when. When a “good period” comes, I cannot predict how long it will last; it can last for months, or only for days. Eventually the pain and diarrhea always come back.

I still try to understand how my body reacts to foods and also to medicines, and I have found a personal diet that works for me. I know now that I cannot tolerate milk and cheese, nor some vegetables which are very rich in fiber. It's a long time since I have eaten ice cream, chocolate, cream, cheese, artichokes, asparagus, pineapple, strawberries and lots of other nice things.

The good news is that I have learned how to identify my body’s early warnings and react fast. I always take my medications with me, above all when I travel. I am very fond of traveling, and I refuse to limit this hobby because of IBS. At work, if I have to interrupt meetings, I tell people exactly why I need to do it. The disease is nothing to be ashamed of, and as people know about my problem, they become understanding.

For me attitude is everything in IBS, I try to keep positive, although from time to time I can't avoid crying in a corner.

– Name withheld by request
^{July 20, 2009}  

Hi, I am currently at university studying law. That in itself is extremely stressful but my symptoms of IBS only seem to get worse when there is coursework. I was diagnosed a few years ago and given antispasmodic tablets. I only used these for a period as I realized that they only delayed my symptoms and only added to the physical issues I was already dealing with.

My symptoms include a fuzzy head, inability to concentrate, bloating (I sometimes look as though I am heavily pregnant, stomach cramps, diarrhea, constipation, frequent trips to the loo, heartburn, urgency to urinate. I have read symptoms from other websites and only a few had the same symptoms as me.

I am depressed as a result as it means I can't be my normal self – none of my clothes fit, as anything around my waist feels as though I am wearing something about 2 sizes too small. I constantly feel nauseous and I know my breath smells as people tend to turn away when I speak. This has knocked my confidence.

I finally found some improvement when I started to drink more water, started going to the gym a few times a week, and cut meat out of my diet, replacing it with vegetables. I didn't give up meat completely, but saved it for once a week, the rest of the week was fish. I felt so much better in myself but the sad thing is I couldn't have a day off from this regime. I also had a probiotic each morning. My symptoms had more or less disappeared. But I find it so difficult to stick to this regime because it is so time consuming. Does this mean that I am a chronic sufferer and have no other options?

– Name withheld by request
^{January 8, 2009}  

I am a 57 year old female who had all 3 of my children by C-section and have had no injuries to the rectal muscles. I have had IBS for as long as I can remember. Within just the past month, I have had two incidents while asleep where I had diarrhea and had an accident, had to get up and shower and put all the bedding in the washer and remake the bed, while crying. It was hard to go to sleep, I was shocked and ashamed and could not believe it happened. But 3 weeks later, it happened again, after having a day of mild IBS pains which I am used to, but had unusual gas that day and even as I went to sleep that night, I still had extreme amounts of gas even though I had eaten nothing strange or unusual from my regular diet. It does not take anything strange to set off my IBS. The third incident happened just this morning after I had been up for half an hour and was going about my daily routine. I felt the urge to go but missed getting to the toilet by maybe a mere 3 seconds. I had another shower and laundry scene, cleaning the toilet, etc. I finally told my husband but no one else. I don’t know which one makes me feel more like a leper, the nocturnal ones or the wide awake accident. I have been taking anti-diarrheal medicine at bedtime, in fear it will happen again. Sometimes that over the counter medication causes severe problems upon awaking, as it did with me this morning. I have learned to listen to my IBS when it talks and plan my routine around it pretty much, but this past month or so, I cannot always rely on the signals and am reluctant to go out much. This disease does not 'show' on the outside, so even good friends are not always understanding. I am aware of this so I keep it to myself. It could be so much worse.

– Name withheld by request
^{November 7, 2008}

 

 

Searching

For many persons, IBS involves a seemingly endless search for answers. Parts of life may be lost as adjustments are made in response to symptoms. It takes time, thought, and courage to keep sorting out and searching for ways to best manage the condition.  

I have been suffering with IBS for 15 years. The pain can be almost unbearable most of the time, and at times lasts for 3-4 days. I had 3 children, all natural deliveries, and I tell you this pain is far worse than labor. I take anticholinergics, acetaminophen, laxatives, fiber supplements, and have had to take benzodiazepines when I cannot sleep because of the pain and anxiety that it causes. I am a nurse, and when it comes on suddenly while I am at work, I can barely stand up, never mind walk. I have to take my medication and put hot packs on my lower abdomen before I can go back to work-this only helps once in a while. I also have diverticulitis. Any suggestions for this pain?

– Name withheld by request
^{January 6, 2010}

I, like so many others, have been suffering with IBS for over 30 years. But it has been a daily event for about the last 25 years. In retrospect, I think there were telltale symptoms even as a child. My symptoms have evolved and been added to over the years, but I cannot remember the last time I had more than one day of what I consider a normal day.

It started with the diarrhea 4-7 times a day. I lost 10% of my body weight in one week. Sometimes all I had to do was even think about food and it set me off. It was very hard to get thru my lunch hour in an hour as I was in the bathroom 3-4 times. At that time the gastro guy (after a flex sig and a colonoscopy) put me on mesalamine (which is really more for Crohn’s I think) and it was of mild help. Then, interestingly enough, I got pregnant and had a virtually symptom free 9 months. So I also attribute to the hormones playing a part to a degree. However, over the coming years, it has only gotten worse adding new symptoms every so often. Gut wrenching pain, gas, bloating, nausea, a full feeling so I don't eat or very little. I'm on two anti-depressants to help the pain in the gut, an anti-spasmodic (which doesn't always work), an anti-diarrheal, an opiod for pain, etc. etc. Quite a cocktail. Which then leaves me so tired, wiped out, sleepy, lack of concentration it makes it almost impossible to learn and hold a job, terrible memory problems and the constant freight train in my gut day and night. I am seeing another, younger gastro guy to talk about alosetron next although it is a pretty scary drug. And like some others have mentioned, I can find absolutely no dietetic component other than eating small amount throughout the day and keeping a baked potato on hand if I ever do feel hungry.

So, I too, hope some new information comes along pretty soon, as it has had a stranglehold on my life for too many years and I just can't imagine having to continue on like this another 20 or so years. Good luck to us all.

– Name withheld by request
^{December 14, 2009}

This year I was diagnosed with having IBS-D and it was only after I had soiled myself on several occasions where I couldn't reach the ladies room in time... well I had to take extra clothes to work with me. I was a teacher who had also been placed on anti-diabetic meds and the doctor that had then diagnosed me as a type II diabetic two years prior to the one who diagnosed me with IBS-D-- well he finally took me off the diabetic meds and for a short period I no longer had the soiling. I had loose and frequent diarrhea with no pain or discomfort aside from the burning after. Then six months ago- I lost control at a grocery store in the ladies room and it was a nightmare. Now, yesterday I had the unfortunate accident again - only this time in my mom's van!

I cut out eating fried foods, and due to the Type II diabetes I am on the diet with little to no sugar and low carbs. I still have two refills on my meds and I have started to really keep up my diary of foods that trigger the episodes.

– Name withheld by request
^{November 6, 2009}

It was difficult before I was diagnosed with IBS. I ended up having to go through a battery of testing, ending with the ever popular colonoscopy. I was told that IBS was likely the culprit, and that there was no cure. That was back in 2001, I had just gotten married, started a new job, and bought a house in the same year. It appeared as though stress is how it all began.

I'm 34 now, and still struggle on a daily basis; never knowing when the symptoms will flare up, never knowing if I will have an ‘accident’. I discovered that large amounts of leafy vegetables cause the diarrhea. Through research, I also discovered that IBS-D can be associated with dumping of too much bile in the gut, which causes the diarrhea. Cholestyramine seemed to help, however, the grainy powder was very unappealing to drink and now I am right back to where I started. It has been worse this year because of increased stressors. I have been an ER nurse for the past 3 years, I have a 5 month old son, and am going back to school for my Master's Degree. My IBS will probably be out of control for a while, with multiple more accidents in my future.

– Miranda
^{September 8, 2009}

I was diagnosed with Crohn's disease in 1991 at the age of 26, and I also have IBS. I had a bowel resection done the same year and have had several flares – some minor, some major, over the years. I had my gallbladder removed in 2003 and ever since then, have had diarrhea that's gotten worse over the years.

Four years ago, the diarrhea kicked into a higher gear. I noticed it's become increasingly worse since then, but at least loperamide or other anti-diarrheals would take care of it. The past two years, though, have been basically unmanageable and intolerable. I can no longer work out, take walks, travel for work, go to concerts, eat out, visit with friends/relatives – live my daily life – without being sick with such stomach/intestinal cramping and such severe diarrhea that I carry changes of clothing and underwear in my car because I'm prone to accidents and have had way too many to list here.

I, like many other people, have to plan EVERYTHING I do around having diarrhea. My case is a little different, though, because of the Crohn's disease – the disease has been active for two years now, and with regular bloodwork, am able to see the ups/downs of that illness – the IBS never rests or goes into remission. I have one of the best gastroenterologists on the planet – I also have one of the best families, boyfriends, friends and co-workers anyone could ask for. But no matter how much support and comfort I get from the people in my world, this illness/disorder is ruining my life and getting worse.

I've tried anti-depressants, antibiotics, narcotics, medicinal marijuana, home remedies, not eating, every anti-diarrheal out there, yoga, counseling; I've seen dieticians and nutritionists, and so on – absolutely nothing works. I maybe have 2-3 good days per MONTH. I've even asked my doctor for a colostomy. I'm at the end of my rope and will be starting alosetron before the end of August. This is my last resort. If this doesn't work, then exploratory surgery will be ordered to rule out anything related to the Crohn's, but I've been told I may just ‘have to live with it,’ that the diarrhea may be ‘idiopathic’ and that's not something I'm willing to accept. Thank you for allowing me to share my story.

– Karen
^{July 30, 2009}

I was diagnosed with IBS two weeks ago after my doctor did a colonoscopy and endoscopy to rule out any other diseases such as celiac or Crohn’s. I have been having a problem for over a year now, since I had my son in June of 2008. I had a lot of stress in my life at that time with just having a baby and also having a bad allergic reaction to some antibiotics. It was very scary for me and I worried like crazy. That must have triggered something and it all went wrong from there. I started having tons of gas and bloating, along with constipation all the time, and a headache every day. I also have had a sharp pain under the right side of my rib cage that also radiates to the right side of my back every single day for over a year. At times, the pain is so severe that I cannot function very well. Some days, the pain is not as noticeable and I feel almost normal.

I had the doctor check my liver, kidneys, gallbladder, appendix... nothing came up abnormal. I still am worried that they just haven't figured it out... it probably makes my problem worse because I stress everyday because I feel so terrible. I have never had anything like this in my life! I am only 29 and feel like I am on my death bed some days. I am constantly fatigued and feel nauseated most days. I feel like this past year I have been cheated because my quality of life has not been very good. This is the strangest thing I have ever gone through. I feel desperate because I feel like no one can help me. The doctors can't figure it out... I pray all the time that they will find out what the problem is and cure me because this is hard to live with. My whole family thinks I am nuts because I feel so awful all the time, but I can't help it if I am having terrible pain.

I am going to keep a food diary like some have noted on here and see if I can find a way to help my symptoms. This is just a terrible problem.

– Name withheld by request
^{July 22, 2009}

I am a 27 old black man with IBS - too young to go through this! My little cousin, he has IBS too but he is only 17.

It hit me about two years ago and changed my whole life. From being into work/sports/clubs I’m now someone who can’t make it to work, or am going to be late. I do maintenance airport work and I can’t enjoy a full paycheck because of this.

So many tests/so many pills, but no feeling better here!! I want my life back so bad!! IBS is hell on earth. Something has to be done about this. I take all the pills but am still in pain and more pain.

Help, we need a cure NOW - also more men of all races need to talk more about this.

– Lost
^{July 21, 2009}

I am 23 years old and have just been diagnosed with IBS. My symptoms started when I was only 8 years old. My parents took me to the doctors multiple times, and they took blood samples on a weekly basis, but never got any answers. I remember the stomach pain that would leave my hunched over not wanting to move for days at a time.

My symptoms somewhat faded throughout the next few years up until high school. From time to time I would get nauseous, light headed and throw up, then feel fine again. Other weeks it would be, and still is, a week of constant diarrhea or constipation with excessive bloating or that same stomach pain that I got when I was 8.

I have finally been diagnosed with IBS after ruling out Crohn's, celiac, IBD, colitis, or any other major diseases. It has been an ongoing battle, and I still never know if I am going to have a on/off week. I have adjusted my diet, and no longer eat any fatty or greasy foods, minimal amounts of dairy products and absolutely no fast food! My Doctor prescribed an antispasmodic, which helps mea lot with the diarrhea and bloating.

IBS is very difficult to deal with, especially when waiting for answers and never getting any!

– Name withheld by request
^{July 14, 2009}  

I have had IBS, the severe diarrhea type, for 20 years now. I have been on alosetron twice, once before its withdrawal and again at the present time. For a short while, it really helped but it now seems to be losing its effectiveness. Once again, I have to be very careful of what I eat, control strong emotions, and know where all the bathrooms are in the area in which I will be. Traveling is very nerve-wracking, the sudden ‘urge’ and potential diarrhea episodes make vacations tense and much more difficult to enjoy. What does one do when the only real help, the only medication available, no longer works?

– Name withheld by request
^{March 29, 2009}  

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 »

 

 

Working around the problem

Managing the challenges of a bowel disorder in the workplace can be a most difficult situation; it forces a mixing of our most personal and our most public lives. People try many different strategies for managing at work but still report a tremendous amount of stress over the situation. If you have a special strategy for managing your bowel disorder at work, please share your story with us.

I was in college when I was diagnosed with IBS. I had been having almost constant diarrhea. Finally when I was at the campus clinic for a cold, I asked about the bowel problems. The doctor told me I had IBS and I should eat more fiber. What a load of help that was...not. I spent the last five years finding my own triggers and crying and wallowing in pain and informing people who are around me. This is part of who I am and I think people should accept it. I am fortunate to have a family that suffers from bowel problems so everyone understood and my boyfriend turned into husband has been incredibly supportive.

I have had my share of embarrassing moments. I remember taking a test in my psych class and having to ask to be excused to go to the bathroom. I had a great teacher who let me go and come back to finish the test. I had to run the entire length of the building to get the women's bathroom and barely made it in time. It was extremely embarrassing explaining it to the teacher afterward, but she was very understanding.

Now I'm a kindergarten teacher. I can only go to the bathroom at certain times of the day. Still there are times I have to fight intense bowel pain to stand up and teach my students or sit and read a story. Another teacher across the hall has been my savior, because when I can't hold it in any longer I can pop in and say watch my kids please! Then I run down the hall to the adult bathroom. Equally embarrassing is the gas that comes with it. Fortunately, five year olds have great potty humor and it is good reminder that everyone has gas.

Public bathrooms are nightmares when you have diarrhea. Is there anything more embarrassing than the nasty wet loud poop followed by the inane giggling or sniffing by the other bathroom occupants? I know I sometimes wish I could flush myself down the toilet instead of having to walk out of the stall.

Remember you are not alone out there! Often you will find that people can be very caring even when they don't fully understand. Also, you never know when the person next to you in class or at work has the same problem and is just as afraid or ashamed to discuss it.

I still struggle with IBS, but I have been slowly changing my diet and habits to meet my needs. Just because IBS screws with your GI tract does not mean it has to keep you from your life. People can't understand until you inform them! Then if they don't understand maybe you need to find some new people.

– Dixie
^{July 27, 2008}

I believe I have IBS and have had it for as long as I can remember in a mild form. Recently it has become a very big problem with all the typical symptoms as described by other contributors. I am so concerned at work as I need to use the bathroom frequently, which in itself is not a problem, but the noisy evacuation has been worrisome as I am sure it can be heard in the workplace and in neighboring offices. I guess everyone is being polite, but I do not know whether to explain things to my work colleagues or not. Any suggestions?

– Embarrassed
^{June 24, 2008}

[Editor’s Note: If you have a suggestion for Embarrassed, please write to us at stories@iffgd.org. What are the pros and cons of telling your coworkers about your IBS? If you do decide to explain things to them, what are some ideas for how to broach the subject? Tell us what you think! We will post the best responses here.]

 

Support for teens

Teens and young adults who suffer from functional GI disorders are especially vulnerable. The high school and college years are filled with stressors, social activities, and life changes. Feeling constrained by the need for bathroom access can lead to severe social isolation. A young adult living on their own for the first time may not feel they can rely as much on their parents to help manage their personal health, but may not know how to take charge of scheduling doctor visits and finding effective treatment. Support is needed from families and physicians to help these young sufferers transition from a pediatric to an adult model of medical management.

My name is Liz and I am 17. Three years ago, I was formally diagnosed with IBS after years of symptoms. Unfortunately, as a preteen, the constant pain and irregularity led me to desperate attempts to control my stomach, including an eating disorder. Since my formal diagnosis I have become healthier and more optimistic that I will one day be able to regulate my bowels. I struggle every day in isolating trigger foods, mitigating stress, and living my life as a teenage girl. I have had many difficulties in overcoming the self-image issues that come with being a young woman with a quite un-glamorous syndrome. However, with the support of family, friends, and the help of humor, I am now fully comfortable with myself and no longer ashamed of admitting to my gastrointestinal issues. My teachers and close friends are aware of my circumstances and their compassion and understanding have alleviated many symptoms caused by the stress and anxiety of my frequent bathroom trips. I look forward to a healthy future as I explore new paths of treatment. If any teens have questions regarding the struggles IBS youth specifically face (i.e. first dates, sitting through classes, etc.) please write to IFFGD so we can start a dialogue. Thanks!

– Liz
^{November 30, 2009}

I am 19 years old and lately I have felt so desperate and so frustrated by my own body. Ever since I can remember I have had to deal with what I now believe must be IBS. In a few days I have a doctor appointment and I intend to bring it up again, as the last time I had a severe problem I was told to eat more fiber and I don’t think it has helped.

When I was little I was a picky eater and did not eat enough fruits or vegetables and from what I can remember barely drank any water either. I was almost constantly constipated as a result. I worry that I may have somehow damaged my body when I was young. I have also always been very sensitive to stress and used to be very shy. Within the last 2 to 3 years my confidence has grown considerably. Things that used to stress me to the point of nausea I now think nothing of. I have also cut out bad food from my diet and I now eat lots of fruits, vegetables, and grains and drink a lot of water. I began exercising and I am now fitter than I’ve ever been, and yet I still have this problem. I worry that maybe because I was used to feeling sick when I didn’t eat right and let stress take a hold of me that now I automatically expect to be sick when I am stressed or even when I’m just doing normal everyday activities. In that case I would have to break that mental association and hopefully be able to do things without worrying in the back of my mind.

Now, instead of constipation its diarrhea. This entire month I have been miserable, trying and trying to justify my body's dysfunction. I think it may be from stress as my mom has been pushing me to get a job and get into college as soon as I can. I don't even feel comfortable leaving the house let alone having to go to class or work everyday. I can’t remember a time when I digested and passed my food ‘normally.’ I have been told many times that it is ‘in my head’ and that I just need to learn to deal with stress. I used to be so nervous going on a date that I get sick and I believe it interfered with my social life and my confidence. I am very lucky now to have a boyfriend who is understanding and supportive. Lately though I have just been crying and feeling so overwhelmed that I am stressing him out.

Every time I get my period I have horrible diarrhea that forces me to spend hours on the toilet. I nearly dropped out of school in my junior year because every single morning I would have diarrhea and nausea and I just couldn’t sit through class. I graduated early and got a job, but I quit that after a few months and now I am trying to convince myself that I can deal with this. I’ve adopted a healthy lifestyle and I hope that in time it will help my body to heal any past damage. I want to be a biologist and see the wilderness and the rest of the world without worrying about walking out my own front door. Thank you to everyone who shared their stories. Reading some of them has brought tears to my eyes knowing I am not alone and that others have it much worse. Hopefully more research will help us all in time.

– Ashley
^{August 28, 2009}

My daughter will be 9 yrs. old in August and she was diagnosed with IBS about a year ago. I live in a small, rural community in Alabama. Our pediatrician sent us to Birmingham to see a gastrointestinal specialist. We were living a nightmare watching our daughter suffer from this disorder that I still know little about. She would wake up early in the morning sick to her stomach, slumped over with abdominal pain and vomiting on average 2 to 3 days a week! As a mother, I felt very helpless and began to wonder what brought this on all of a sudden.

After seeing the specialist in Birmingham, we learned what food she could tolerate and what she couldn't. We have changed her eating habits... which in itself, was a hard task. That has seemed to help. I wish the school would be more understanding. Sometimes she has to go to the restroom suddenly, sometimes she’s fine and then cramps suddenly, and they don't seem to understand. Her symptoms have improved but are not completely better. The lunchroom manager at her school gets offended because I no longer let her eat school lunch. She seems to have less problems when I prepare her food at home. I want to be able to help my daughter but without hurting others in the process.

I feel foolish as a parent because even though her symptoms are not as bad... I feel like I don't know enough about IBS, why she developed it, and will she ever get completely better. Our doctors here don't seem to know too much about it. There's always that what-if question. What if her symptoms persist or get worse like before? What do we do then?

 

[Editor’s note: View useful information in this article about helping a child with a painful bowel disorder in going to school, using the bathrooms, and interacting with teachers and classmates. Go »

 

– Name withheld by request
^{July 20, 2009}

I'm 15 and have suffered from IBS since I was about six. It used to be very mild. I could go months at a time without one flare up. Recently (the last two years or so) it has gotten a lot worse. Almost every day I'm in pain or feel like I'm going to throw up. I'm scared to leave the house even if it is only a few miles away. I watch what I eat but I'm still in pain.

Pacing the floor at night has become 'normal' for me. I dread my friend asking me to go somewhere with her. I can't have a normal life at all. Last night I stayed up until 3AM pacing the floor and trying to stay calm. I have turned into a person who worries almost constantly. I can't imagine getting a job and being able to go to it every day. My life is going by and I can't even enjoy it.

I get so mad and frustrated that I end up crying. I don't want my mom to worry so hide it most the time. Only when I feel VERY bad do I tell my mom. No one around me suffers as I do and they just don't understand what I go through. My brother once asked my mom if I could stay home (we were going to the mall). I felt so hurt. He didn't want me to go because of my IBS. IBS is running my life and I can do nothing about it.

– Name withheld
^{July 9, 2009}  

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 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}

 

The burden of illness

IBS may have other symptoms apart from pain and bowel dysfunction. The anger, anxiety, or tiredness that many sufferers report may arise from the burden of trying to manage the recurring and unpredictable symptoms of a chronic illness. These feelings become just as much a part of the illness experience as the underlying disease. Talk to your doctor about addressing all of these aspects in your treatment plan, and check our library for further information.

My IBS started in my late 20’s. I am now 55. It’s been a very long painful road. I am sorry to say, but I have gotten worse as the years went by. Now I bloat as if I were 9 months pregnant. How do you explain that to people? I own my business, and I had to give up a lot of working hours to others. The guilt of not being able to do what I did do, or what I should be doing, is killing me. My family ise all wonderful, but I miss a lot of events with them. Does anyone have severe back pain with their IBS? Thank you for letting me vent, and I will search anywhere and everywhere for answers for all of us.

– Name withheld by request
^{August 4, 2009}

As far back as I can remember I have had issues with my bowel. When I was a baby it was constipation. When I was a teenager I started having the spastic colon, and diarrhea. I remember not even being able to laugh during a movie for fear that I would lose control. The pain was so intense and sharp at times that I would double over, screaming.

By the time I entered college things had really gone downhill. I wanted to be like everyone else and be able to drink and eat what I wanted. I paid severely for it. I had ‘hidden’ bathrooms all over campus. The heartburn became unbearable at times, keeping me up all night.

Eventually, my wild ways slowed and my symptoms lessened. There have been times of severe flare ups, when my life is extremely stressful. I am 27 years old and want to feel normal. I am tired of nausea, indigestion, stomach pains, no energy and lack of nutrition. I eat well, rarely drink, don’t smoke.

I hope this makes someone feel like they are not alone.

– Name withheld by request
^{July 13, 2008}

My IBS has gotten much worse with the years. I am now 54 and in good shape other than IBS. It has become so restrictive in what I can do on a daily basis. I am in real estate, so I can be at a bathroom or home in a flash. I couldn't go back to teaching because of the need to bolt at any given moment. Even with real estate, the number of ‘accidents’ on a bad day can be very depressing. I often have to do a hand wash and then a dark wash. It's a dark wash because I can only wear dark underwear.

It isn't just the clothing and the accidents. Being single, I doubt I can have a normal love life because of the burden this puts on beginning a relationship. It becomes too much baggage from the very beginning. I don't know if it has to be that bleak, but my world is becoming more and more restricted because of this. It is a strange detour from what you would ordinarily think of as a life changing problem. Cancer, arthritis, maybe heart disease strike, but this one keeps you inside your house and away from outings of any duration. It is very, very depressing.

– Mark
^{May 14, 2008}

Body, mind, spirit

Two generalizations can be made about the consequences of chronic illnesses: 1) the person with a chronic illness experiences impaired functioning in more than one, often multiple, body, mind, and spirit systems; and 2) the illness-related demands on the individual are never completely eliminated.^_[1] There is no cure for IBS. Treatment is aimed at relieving symptoms, but is not always enough; help in learning how to live with the condition may also be needed. Much has changed to improve understanding of IBS in just the past 5 years. If you have been struggling for years to live with a diagnosis, ask a specialist in functional GI disorders what new treatment strategies may be available.

As I read these stories I'm shocked that there are people out there that have had the same experiences as myself. I have felt so alone, ashamed, embarrassed, gross. I always make jokes with those around me to cover my embarrassment of how often and urgently I need to use the bathroom. People think I have a good sense of humor about it but really I'm so tired and disgusted with it. It seems so unfair that everybody can eat and drink what they want and feel fine, but for me, its anyone's guess how anything I eat will make me feel. I haven't figured out my trigger foods yet because I don't have consistent reactions to any foods. Its stressful and depressing. I was incontinent twice while with my 15 year old son. He was understanding but I know how upsetting that must be for him. My husband is also understanding but he doesn't understand why there's nothing that can be done to fix it. I feel hopeless and tired.

– Name withheld by request
^{December 28, 2009}

I have been dealing with IBS forever. I am 33 years old and tired. I have been dealing with pain on my right side and diarrhea all the time. So sick of it. I read the story from July 22, 2009. Whoever you are I am in your shoes. I have been to the hospital several times. I thought many times I was going crazy. But, it’s always in my head. But, this IBS is very serious and can cause a lot of stress and anxiety. I had my gallbladder out 5 years ago and its been worse ever since. I hope someone reads this and realizes that you’re not crazy, it’s real and this pain that occurs is not in your head. I do get tired and sick of it. I want a new stomach. But, just remember to relax and stop eating a lot of dairy foods and greasy foods. Thanks

– Name withheld by request
^{December 2, 2009}

I have been suffering from IBS-diarrhea for a little over seven years now. When I was in high school I always had a sensitive stomach, but figured it was nothing and that I just needed to be more selective about what I was eating. That was until I started college and the 'episodes' would occur at least 4 days a week, several times a day. I would be embarrassed to go to classes because halfway through a lecture, I would need to get up and make a run for the restroom. And, even after going I would still feel like the same episode could happen only minutes later.

Since then any time I experience any amount of stress or even any emotion beyond complacency, my stomach reacts and I am sent flailing to a restroom. It's horrible. My most recent relationship ended because my boyfriend couldn't handle the nervousness and anxiety I would feel about eating or being in public places without a restroom. And then because I was anxious and stressed, my stomach would react and I would have diarrhea, the one thing I feared happening.

These symptoms are debilitating to my social and professional life. I don't feel I can travel anywhere without knowing for certain I will have access to a bathroom. My relationships suffer because I don't feel attractive or desirable when I am gaseous and experiencing frequent bowel movements. And I can't take a work position that doesn't allow me to get up and disappear for several minutes at a time incase I begin to feel sick.

I have felt alone and frankly, abnormal for a long time now. It's nice to hear that there are others experiencing the same, or similar, symptoms and that work is being done to help people get back to their lives without worry of their digestive problems.

– Name withheld by request
^{April 6, 2009}  

I am thankful that God brought this website my way. I, like everyone who have posted a story thought I was alone. Today I left work because of the embarrassing symptoms that I was having: Bloating, running back and forth to the restroom, and the GAS is just the worst. I work in cubicles and sit at the very end where everyone has to pass me to leave my row. The embarrassment and discomfort is daily.

I have spasms everyday and always feel like I'm going to the bathroom on myself. If I didn't need my job I would quit. I am pretty open with a lot of my co-workers about my situation, and they often sympathize with me during my daily stomach issues but, it still doesn't take away the embarrassment. If I didn't need food to survive I would never eat again.

Durn, it felt good to get this out. You can tell people who don't have this problem about how you’re feeling, they will listen but probably never understand it.

– Tiffany
^{January 5, 2009}  

 

Going without

Many people with IBS wonder if certain foods trigger their symptoms. Some IBS sufferers are able to identify a specific food(s) that aggravates their symptoms, and make a change in their diet that helps. For many others, a change in diet has little or no effect. For still others, the very act of eating activates digestive processes within the gut that can bring on symptoms regardless of the food. (If that is the case for you see if eating more frequent smaller meals, rather than a few larger meals helps.) Approach dietary measures systematically and with caution.

I have been struggling with IBS for seven years. I have frequent attacks of diarrhea, and burning intestines and rectum. It makes it very hard for me to do anything other than camp out in the bathroom and cry. I've had numerous tests, but everything comes back normal. I also have GERD, and when my IBS is in full tilt, so is my GERD. One product that helps keep my intestines calm is psyllium fiber. It's really gross to drink, and when I stop taking it, that is when my attacks reoccur with a vengeance. For me, it is well worth the awful taste in order to not deal with a severe attack. Diet helps me too, but who wants to eat cardboard for the rest of their lives? I find that with the psyllium fiber, I can pretty much eat what I want, except for foods that I KNOW will still trigger an attack. This condition has made me depressed and aloof, when I used to be so happy and outgoing. Hopefully, one day I may get this condition under control.

– Name withheld by request
^{September 4, 2009}

It all started in my first year at University. When I had to take my exams in May 1994, I was very stressed and I had bloating, diarrhea, and urgency. The urgent need to go to the toilet happened many times a day. It’s still going on 14 years after, however I discovered that if I avoid certain foods I feel much better.

For me, I do not eat any food that is made from wheat flour and cow’s milk. I only drink milk and milk products made from goat’s or sheep's milk.

However, having to follow a specific type of diet is very tiring. But I believe I have to follow this diet as it is the only thing that helped me so far to feel better and have a better quality of life.

– Zoe
^{June 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}

 

 

Sacrifice

IFFGD’s 2002 IBS in the Real World Survey found that people are sacrificing huge parts of their personal lives as they battle to manage their symptoms.

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}

When I was 27, I first experienced the symptoms associated with diarrhea prone IBS. I am now 63 and still deal with this insidious condition on an almost daily basis. The ways it has affected my life are so many; from missing out on important family events, to having to leave the work force before retirement age, to being afraid to venture where there is no known bathroom facility. I am divorced and there aren't too many understanding men who will date a woman with IBS. Isolation is huge, anxiety is right up there with the loneliness. A drug finally came along that gave me back some of my normal living; it was taken off the market for safety reasons; even though it was reintroduced several years ago, the cost of $400 per month; out of my ability to pay.

I've got a library of books, tried many restrictive diets, meditation, etc. I am out of ideas and hope.

– Dale
^{May 8, 2008} 

 

 

 

At a loss

IBS is not caused by stress, but having the disease can certainly be stressful. While there is no cure, symptoms can usually be improved when working with a knowledgeable doctor. Sadly, not all doctors understand the condition, leaving their patients to find solutions on their own. IFFGD maintains a resource list of physicians interested in treating patients with the condition. Contact us for information.

Fifteen years ago after eating at a popular seafood restaurant, I experienced a cramp-like pain in my lower left abdomen. I was misdiagnosed as having a urinary tract infection. At that time, my bowels started to move slowly and at many times took on a yellow appearance, however, I did defecate each morning! This 'cramp' lasted for approximately 10 years when suddenly it disappeared! Unfortunately, the pain showed up days later in the upper-left abdomen and stayed consistently for another 5 years. This January, my sister passed away after a most courageous battle with ovarian cancer and I was stressed. Along came a new and most disturbing symptom... nausea and upper right sided pain, and extreme bloating. I now have these symptoms along with diarrhea, and loathe even the thought of food. I'm interested to see if anyone else has these symptoms because I feel so alone and isolated due to my symptoms. Gastro-docs are not helping! May God bless each of you in your sufferings and know that I'm praying for a solution.

– Name withheld by request
^{March 7, 2009}  

There is no question I have a sensitive digestive system - and stress makes the symptoms worse. I read some of the testimonials here and not everyone talks about depression or anxiety – but I find that goes along with the abdominal pain.

It seems to be a chicken and egg question - because I read that IBS can cause depression and anxiety - and depression and anxiety can cause abdominal and other pains.

Here's hoping your symptoms improve.

[Editor’s Note: See the article from IFFGD Research Award winner Bruce Naliboff, PhD for an explanation of this topic. Go »]

– Norman
^{July 31, 2008}

 

 

Finally, some answers...

Many people endure the pain and bowel symptoms of IBS for years before finding a name to put to their suffering. Having a name for a disorder is not the same as having a cure – but it can be the first step on the journey back to a better quality of life. Learning to listen to your body and finding your personal triggers are also important steps to help you to begin to take control of your symptoms, instead of allowing them to always control you. Keep an organized record of your diet, exercise, stress levels, and bowel habits using IFFGD's free online Personal Daily Diary. 

I have been suffering from IBS for many years. It had restricted my life to the extent that I would get depressed. I could do some activities, if I knew there was a bathroom available. But traveling presented a problem and I would get angry because of my limitations. I kept this all to myself and my husband suffering alone. I tried biofeedback, and the nurse who was helping me thought I should see a psychiatrist, which I did. He put me on an SNRI which changed my life... to about 80 % normal. My focus is no longer on the worry that comes with IBS. My life has become freer, but on the downside, I've begun to ‘what if’ again, so we may have to increase the dosage. So, yes, there is some help out there.

– Name withheld by request
^{August 26, 2009}

I was diagnosed with IBS about 7 years ago, after a lifetime (I'm 55) of upset stomachs, diarrhea, bloating, constipation & gas. I've been reading some of your stories, and they are so familiar! I can laugh at some of my experiences now, although back then they were pretty terrible - like the time when I was 17 when I farted really badly in front of a boy I particularly wanted to impress. It took me years to get over the embarrassment.

The hard part, I know, is that IBS affects everyone in different ways. A few years ago I cut all except for very pure foods out of my diet, and gradually reintroduced potentially problematic foods. I've found I have a very low tolerance for dairy foods, especially milk. Milk powder is used as a filler in a huge variety of products from mayonnaise to cookies. I stand in the supermarket and read lists of contents on packets these days. I don't drink coffee or aerated/carbonated drinks.

The good news is I can eat fruit, vegetables, meat and eggs and soy milk. I bake my own bread and cakes when I can. So I manage a varied and interesting diet. For a dinner out, I find Asian food (but not Indian) is reasonably safe.

On the alcohol front, I rarely drink beer or aerated/carbonated wines like champagne, but I find spirits such as Scotch with water or ice (not coke or dry ginger) can be quite soothing, in small quantities.

My main point in writing is that having had IBS for most of my life, I’ve found it possible to live a full and varied life. I have a career (I'm an accountant), I've been married, I've had three children. I've also traveled, taking my diarrhea tablets with me. I use an off-the-shelf brand which works for me, and I make sure I always carry them. When I arrive at a new place I usually have an IBS episode, but once that passes, I'm fine.

Two things I regard as essential – drinking lots of water, and exercise, even if it's only walking. Both definitely have helped me. I have long periods where, provided I stick to my diet, I have virtually no symptoms.

– Jennie
^{December 28, 2008}  

I am so thankful to find this website! I'm 21 years old and have been suffering from IBS since high school. I seriously can relate to every single person’s problem on this website whether it is people telling you that your stomach problems are from stress, or that it’s just in your head, or people just totally not understanding the severity of the pain.

For a long time I really thought that my problem could not just be IBS, that it must be something worse but after a colonoscopy and several other tests come back negative I just decided to agree with the doctors. It helps to know I’m not alone with this. I wish everyone well and here’s to finding some treatment that actually works!

– Heather
^{July 28, 2008}

 

 

What's going on?

Living with IBS means living with uncertainty. Symptoms are often unpredictable, unexplained, potentially disabling, and invisible to others. Any of these things can disrupt daily living. Support from others is important, but even those closest to you will need help to understand your needs (see Relationships and IBS).

I don’t remember exactly when I began noticing IBS symptoms, but I can recall an incident from the 8th grade: I was sitting in class, experiencing intense and unrelenting gas pains, feeling like my gut would explode, and trying to act like it wasn’t MY “stomach” making those strange noises. For a shy adolescent in a new school, it was a painfully embarrassing incident. Unfortunately, it was only the first of thousands that I can recall. For most of my 50-something years I have not talked about my problem. Gastrointestinal problems aren’t the kind of thing one wants to discuss on a date, with colleagues, or even with friends and family. At most, I had "a nervous stomach" or certain foods "didn't set well with me."

Because I didn't talk about the problem, I felt isolated and never knew that others shared some of my experiences with IBS. And I didn’t know what to call it until I was finally diagnosed just a few years ago with IBS-C.

This is what happens to me during a typical IBS Attack: I begin to feel gas building up, then comes the discomfort, then the sharp pains, followed soon by a feeling of urgency to get to a bathroom. Once there, I sometimes immediately have a bowel movement, usually “explosive” in nature (making me very glad the toilet was only steps away!), but sometimes nothing happens. Those times, I go back to whatever I was doing until the urgency returns, usually within minutes, so I stay close to the bathroom. Most occurrences result in several hours of alternating between bed and bathroom. While on the toilet, I typically begin to perspire, eventually to the point where sweat pours down my face, and my whole body becomes sweaty. This will continue for a few minutes, during which time I’ll have a bowel movement. The times when I’ve been constipated are the worst: the buildup of waste in my gut over a period of weeks results in terrible pain and strain in trying to get it out. It is hard and pellet-like. It gets to my rectum and stops! This is the most embarrassing of my secrets about IBS: often, I have to “dig it out” with my finger in order to get things started moving. (If I don’t, I end up sitting and straining for an hour or more, so that I now have hemorrhoids.) I keep a container of Vasoline nearby to lubricate my finger. Even without the existence of constipation, however, I sometimes end up sitting and straining as I experience colon “spasms” that last for 30 minutes or more. Eventually, I feel it is safe to stand up. Then, damp and dizzy, I stagger to my bed and collapse, suddenly freezing, until the next wave of pain and urgency hits. This will usually happen within 5 minutes. I race back to the toilet, sometimes just in time, for another BM accompanied by pain, sweat, dizziness, and often nausea. Because I can’t get up to vomit into the toilet, I have a plastic trash can standing by. If I’ve recently eaten, it all comes up and I may vomit numerous times over several minutes. Even with an empty stomach, I’ll vomit bile for several minutes. I believe it’s the pain that makes me nauseated. When I feel it’s safe, I’ll go back to my bed, although there have been many times I’ve gotten on the bathroom floor, until I have to get back on the toilet. After I’ve gone back and forth for several hours, the worst of the attack will be over. Then I must stay in bed, usually freezing and feeling weak and exhausted, for another hour. I can’t seem to get my hands and feet warm and, even though I’m hot-natured and typically keep the A/C turned down to 65, I’ll crank the heat up until I return to normal.

Stress is definitely a trigger but not the only one. Certain foods and drinks, when and how much I eat, lack of sleep, fatigue – all triggers. Sometimes I'll eat nothing but Saltine crackers for days, and still have an attack. Maybe it’s my imagination, but symptoms seem to be getting worse as I head toward my 60’s - there are more occurrences, and the length and severity of attacks seem to have increased, too. Could it just be that the normal problems of a 50-something body - weight gain, arthritis, insomnia, menopause – are magnifying IBS? My life is stressful and more complicated these days, so maybe that’s the reason. Anyway, living with IBS is a humbling experience, a total lack of control over your body and your life. IBS is debilitating, humiliating, and painful. There’s no cure, little to nothing can be done to counteract or even control symptoms, and I wouldn’t wish it on my worst enemy.

– Name withheld by request
^{January 8, 2010}

I was diagnosed with IBS in 2004. Pain in the abdomen, gas, bloating, belching, burping, sudden urges to the bathroom seems too much to handle. Very frustrating. I'm depressed due to the fact that these symptoms don't go away. I'm on low fat, high fiber diet, but nothing seems to help. I'm done with medications. After a while it stopped working. I cry over this almost every day, because I'm so tired of this. I can't enjoy a normal life nor my spouse. Please someone help me.

– Name withheld by request
^{December 24, 2009}

[Editor’s note: A high fiber diet is not always helpful for IBS. Too much may even worsen symptoms. Be especially careful with insoluble fiber, found mostly in cereals and whole grains (or bran). Soluble fiber, mostly found in fruits and vegetables (or psyllium in supplements), will usually be easier on your system. Find out more here.] 

I have suffered from these symptoms for roughly 12-15 years, and only in the last 2 years been diagnosed with IBS. My symptoms are: cramps, nausea, bloating, and more constipation than diarrhea. I suffer from this every day of my life, some are worse than others, stopping me from going to work at times. Some days I just feel like crying, as I am so sick of not feeling normal, and being able to eat what I want. I drink coffee, smoke, and am a worrier and stressed person, all of which don’t help. I suppose I am aware that there is probably some things I could try/eliminate, but if I ate what they say will help and not ate what they say not to, I feel like I would be giving up so much. If I eat more fiber, I am worse, and I have tried so many tablets, none of them work, and I feel that doctor's and specialists don't really understand or care.

[Editor’s note: There is no one diet that works for everyone. Try to figure out what works best for you. Here is some general information. Go »]

– Jacinta
^{June 22, 2009}  

I was officially diagnosed with IBS today. I knew that there has been something going on with me for many years and it has always been a very embarrassing subject with me. I have had tummy problems for as long as I can remember and my hubby just thinks it's all in my head. I am 31 years old and I have a daughter that I'm pretty sure is going to have the same problem as me.

This has just made me totally depressed because I know that I am not alone but I am alone within my family because no one understands what I am going through. My husband gets upset if I tell him that he has to watch our daughter for awhile because I'm ‘camping out’ in the bathroom for hours. So I try to suck it up as much as possible and not complain but I also have no one to talk to. This is a very lonely problem.

– Amy
^{August 1, 2008}

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»

 

 

Other Disorders

Many other disorders can affect the digestive tract. Some can have symptoms that may be similar to or overlap with gastrointestinal functional or motility disorders. These will have uniquely identifying features which differentiate them from functional GI or motility disorders. However, the impact these disorders have on a person’s life will be very recognizable to an IBS sufferer.

I have had symptoms since age 10, and am now 55 years old. I always attributed it to IBS, but just last an endocrinologist tested me and confirmed that I have Celiac disease. Celiac disease is an autoimmune disease brought on by severe allergy to wheat and gluten, which causes the body to attack the intestines, destroying their ability to absorb nutrients. My symptoms also mimicked IBS: the hours and hours of cramping, attacks of terrible diarrhea. Stress just made everything much worse.

I would advise anyone with IBS to explore the possibility of Celiac disease, which requires - initially - a simple blood test to detect. Some doctors go on to intestinal biopsy as another tool, but my biopsies were inconclusive, while the blood test was glaringly positive!

[Editor’s note: Find out more about celiac disease. Go »]

– Ann
^{August 4, 2008}

I am a 48 year old Registered Nurse who has been living with eosinophilic gastroenteritis (EGE) for 6 years. It is a very debilitating disease and one that is very difficult for anyone who has not suffered with it to understand.

Our entire culture is based on food. Picnics, business lunches, church socials, going ‘out’ to dinner, holiday feasts, just about everything that we do to socialize is based on food. I on the other hand would never eat again if I could.

Eating is something that I have to force myself to do. I never know which bite of food will be the one to cause me to start the hours long ordeal of throwing up followed by severe stomach spasms. When I go through an ‘episode’ I usually don't consume more than about 2,000 calories over a 7 to 10 day period. My average weight loss is 5 to 7 lbs. Of course when I resume the corticosteroid medication I take I put weight on without even eating. Ironic isn't it. I pray that I can find an alternative treatment for controlling the symptoms so I can stop taking the medication. It is causing me a lot of problems. I guess I'll have to apply for disability since I am a Home Health Nurse. I am too young to feel this old! I have a lot of life to enjoy, I want to watch my 1 year old Grandson grow into a handsome young man.

–Maggie
^{August 9, 2007} 

Further Reading

For more information on Eosinophilic Gastroenteritis please click here.

Top of Page

 Gratitude

"At times our own light goes out and is rekindled by a spark from another person." – Albert Schweitzer

I just wanted to thank others for their stories. I am 26 years old and have suffered from IBS for about 5 years. Recently it has become more annoying. I am quite tired, always have a bloated stomach, and also pain. I can relate with the others about being alone in this.

– Derek
^{January 2, 2009}  

I've suffered with IBS since age 13. I've always felt alone with it, I've felt that I've had to hide it... I've been ashamed. It's great to have found this site and see a light at the end of the tunnel.

– Name withheld by request
^{August 10, 2008}

I would just like to thank everyone who has told a story here. I have IBS and I have felt alone for so long thinking that I am the only one that has this. Thank you all so much.

– Brenna
^{December 31, 2007}

Top of Page

Participate in Online Writing Study About IBS

You can help advance research about IBS – from the comfort of your home. Take part in this online study.  Boston University School of Medicine is doing an online study about writing and IBS. The purpose of the study is to do research on the management of irritable bowel syndrome.

The entire study is completed online and involves:

• 30 minutes/day online for four consecutive days 
• Completing several questionnaires before and after the study

The compensation for participating in the study is $25. At this time only U.S. residents can enroll. To participate in the study please visit www.bmc.org/ibs or to find out more, email: ibs.study@bmc.org.   

– Posted by IFFGD
_{^{June 4, 2009}}