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Personal 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.

View more stories or share your own through our grassroots arm, the Digestive Health Alliance (DHA).

What's New?

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 am a 50 year old female with IBS with constipation most of the time. I don't feel comfortable having to have a bowel movement in public restrooms or at friends’ homes because of the noise from gas and the smell. I found bowel retraining program helped my chronic constipation problem - by having a set time every day to sit on the toilet to have a bowel movement then I don't need to have one in a public restroom or at a friend’s home. If I stay overnight at a friend’s home I get up early enough that I have my privacy and can take the time I need without feeling like I'm taking too much time in the bathroom or feel rushed in any way. I carry a pocket size air freshener in my purse and spray it into the air while I'm on the toilet. At home I strike two or three matches and let them burn a couple of seconds each to fill the air with sulfur smell from the matches. I have had constipation problems since early childhood and this is the only way I have gained control over it but It is a daily time commitment for it to work.

– Name withheld by request

I am a 63 year old female who has had digestive problems and symptoms since childhood. Along with food sensitivities and frequent alternating bouts of constipation and diarrhea, I have had lots intestinal pain. In 1980 I was diagnosed with a severe prolapsed colon and had surgery to correct it. I had subsequent adhesions, endometriosis, multiple fibroids and ovarian cysts that resulted in a hysterectomy in 1995. I have done pretty well over the years adjusting my diet to help with the symptoms. I have tried medications and insoluble fiber but they did not seem to help.

As I have gotten older the symptoms have gotten worse. I have eliminated more foods that seem to trigger episodes which has helped, but not entirely. Caffeine does not seem to bother me, but alcohol, even in very small quantities, will bring on bouts of IBS as do beans, legumes, fats, gluten, sugary foods, and some types of sugarless gums.

I exercise regularly which helps a great deal not only to control stress but to get motility in my intestine during bouts of constipation. I think the symptom that bothers me the most is urgent diarrhea which can hamper one's daily activities.

A positive outlook is also very important. IBS can really limit daily living, but the living is the important part and doing your best to know that this too will pass helps.

– Name withheld by request

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

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

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

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

 

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!

Hi, I am in my second semester of college for engineering. I have been having IBS symptoms for almost one year. It’s so, so, so embarrassing. I have diarrhea attacks almost daily. Also I have lot of gas trouble. I cry daily sitting in the bathroom. My college is strict about attendance and that adds to the stress. It’s not possible for me to sit in lecture for hours continuously. My stomach makes loud noises and I have gas problems and cannot evacuate my bowels completely. My life has become hell. I have to miss classes and cannot even tell my friends about this because it’s really embarrassing. I am really stressed. IBS is the worst thing that has happened to my life.

Name withheld by request

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

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

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

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

[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.  

In response to Kristen's story from '07, I understand exactly how you feel. I was diagnosed with IBS a couple years ago and ever since it has made my life hell. Honestly, I'm not even convinced that it is IBS, but that's what the doctors say, so who am I to argue! I'm not the one with the medical degree...

I have tried every OTC gas medication along with plenty of other things that were supposed to help like peppermint oil capsules, probiotics, heartburn medication (though I don't understand why my doctor gave me this), anti-spasm medications, and even anti-depressants! I have drastically changed my diet too and yet nothing has worked. I also have been tested for celiac disease multiple times always with negative results.

My main symptom right now is severe bloating and gas, but because there is no prescription medicine for that, my doctors have told me there is nothing I can take except simethicone I wish they could help me prevent the bloating. I feel like there is something that can be done to alleviate some of my discomfort. To them it may seem like just a little bloating, but it is far worse than that. Even if I don't eat a lot of food, my stomach will puff up so much you would think I was pregnant. Unfortunately, that feeling and look can last up to 3 or 4 hours at a time. Talk about a buzzkill. That pretty much can ruin my plans for the entire day.

I have come to the point where I don't even want to eat because I just don't want to deal with the discomfort and I don't want to live on simethicone for the rest of my life. I just wish that someone could fix this. I know I am not the only one that has to deal with this, and with the amount of people who are diagnosed with IBS, you would think that someone would be able to help us sufferers by now. I think that is the worst part of it all. Because there is no medicine or anything to fix this, we have no choice but to silently suffer through this every day. I just wish people understood what we are going through because it really sucks to feel like crap all the time when people think that it's all in your head or that it's not as bad as you claim.

Lauren

I am almost 70 and have suffered with IBS for several years despite trying out different meds and watching what I eat. Lately it has become hell. I do not know how much more I can stand. We went to FL on vacation and I never left the condo for two weeks. The pain is so bad. I also have other serious health problems. A lot of days I just pray to die. My husband is very understanding but not my family or friends. To them IBS is a joke. I cry so much because of the bad pain, heartburn and feeling hopeless.

Name withheld by request

I had a fundoplication in December 2007 because I could not take proton pump inhibitors for GERD. A few months after the surgery, I had heartburn-like symptoms and epigastric pain that mirrored GERD, but it was due to dyspepsia according to the gastroenterologist. I finally felt better from January 2009–April 2009.

I went to Arizona in April 2009 and got food poisoning from swordfish. I haven't been the same since. I had gas, bloating, constipation, and worm-like stools. I saw my primary physician when I returned from Arizona and she thought I had viral gastroenteritis. I also saw my gastroenterologist who prescribed polyethylene glycol for constipation and said "at least you don't have Crohn's disease." After months of suffering and frustration, I went to a different gastroenterologist who prescribed rifaximin as I thought I may have small intestinal bacterial overgrowth. It helped with the bloating and gas slightly, however, my stools were no longer worm-like, just foul-smelling. I took the prescribed dose of 550 mg 3 times per day for 10 days, however I had side effects from the medication including muscle spasms and tinnitus so I cannot take it again.

It is disheartening that there is so little that can be done to remedy this illness. Even my gastroenterologist said that more money is spent on Erectile Dysfunction than IBS. My quality of life has declined and activities I enjoyed such as culinary tours are not an option. There are no IBS support groups in my area which makes matters worse.

Name withheld by request

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

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

 

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

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

 

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

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

Questions about IBS?

    Find answers to many questions about IBS on our Frequently Asked Questions page. Go »

 

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 had more than my fair share of bowel accidents, as I have frequent diarrhoea associated IBS. Basically it is often stress related as it happens to me as it is normally very difficult upon very short notice (seconds!) to come to grips with very sudden and urgent needs to defecate. Most of the time, I win. But there are other times that, well... I lose!

Like the athletic community I have had more than my fair share of public humiliation and embarrassment in the extreme. (and I am only a 22yo male). With exception to two instances which were victim of prank, all the other instances are either unexplained or due to heavy stressful situations.

As these were indeed sporadic, which actually makes it worse, there is no telling of an impending attack. It just... happens!

So I have to be very careful and always know my surroundings: that is awareness of just where the loos are, whether they are indeed publically accessible, and that I can gain access within as quick a time as conceivably possible. Again, I am usually successful in this as I know my situation, but not always so lucky. It can be guesswork for me especially on travelling and in unknown destinations.

Experiencing urgent diarrhoea attacks in public is no fun! Some of those who are 'uninitiated' seem to only make jest and crack insensitive jokes about it. Personally as I do take personal offence, I also understand that many of these people are rather ignorant and have not been properly educated thus living off of old and outdated mythos, as perpetuated through Western cultural traits.

Also from a financial end, procuring rather hefty laundry bills from having to wash soiled laundry so frequently can become quite taxing in its own right. I have unfortunately wound up destroying some very expensive (and in some cases, irreplaceable) clothing. That is very frustrating as well, needless to state.

But unfortunately there is no 'cure' for soiled laundry, unless one went the napkin (pad) route. Sorry, but despite my own plight, I am still too conscious in regard to wearing adult nappies! In a way, as this may seem rather odd, but I prefer to have some of these accidents in public as solely to EDUCATE the general public through hard and present experience, that yes, indeed this IS a more common issue than they seem to realise. In my case, I WANT people to know, and no, it is NOT a matter of 'pride' as one friend had begun to think! It is more of an altruistic sacrifice of sustaining embarrassments as bad as they are, so that the general public at large shall finally come to terms that indeed this is a very common problem. It's a brave thing to do (despite its inherent disgust in Western culture).

Pedro

I am 81 now and the past year has been difficult with never knowing when I need a bathroom. I have pretty good control now IF I am careful about fresh foods, milk, etc. I eat lots of rice daily, oatmeal, black tea, etc. Some foods may or may not cause a problem, they cause me to be very careful and even when I am, it happens. Then constipation results, then it begins its pattern again. I can't digest my veggies any longer, I can only have 1/2 a banana then NONE for 3 days, etc. I have learned by trial and error. I believe it began because of a medicine I had to take. Hope this helps.

Maralyn

I have had IBS for over 30 years. I was diagnosed maybe 20 years ago. It was such a relief to have a diagnosis, but that was short-lived. Since that time I have been to so many GI docs as well as therapists and also a nutritionist to get some help in managing this. I have not been successful in getting any relief at all. I am now at a point where I have eliminated so many things from my diet that there isn't much left. I have a bad reaction from so many foods but also just from the action of eating. I am constipated but when I do have a BM it is soft or sometimes I don't go for 3 or 4 or 5 days and it is soft or watery. My system does not work right at all. I suffer from abdominal pain constantly. After a BM it should feel better but for me it actually feels worse.

Linda

I am a 24 year old female who has been dealing with IBS for as long as I can remember. I was officially diagnosed in 2003 with the syndrome, and have been finding ways to deal with it more comfortably every day. The majority of my family and close friends know about my disease, which has made dealing with flare-ups more comfortable. My friends are extremely supportive, and being able to talk with them has made dealing with IBS more bearable. I now am able to use public restrooms more often, when previously I would hold it for HOURS, such as in high school, which was hell. Every day I left feeling extremely cramped and backed up from holding it for so long (sometimes to the point of having difficulty walking). During college, I started to space out my classes enough to allow myself to be able to go home to use my bathroom in privacy if need be. Now, if I know I can’t go home during work or when out, I usually will just say ‘screw it,’ and use the closest restroom. A friend taught me of the “courtesy flush”, where you flush during your movement so as to avoid any embarrassment (so many toilets automatically flush while on the toilet anyways!). Also, using the restroom at low traffic times, or using the farthest stall from the sinks makes trips to the restroom more comfortable. Holding it makes everything so much worse.

Working can be extremely embarrassing, especially because after eating my stomach makes noise and I get very bloated, and usually will have a BM shortly after. I have found that by working at jobs where I am on my feet moving around, I am more comfortable and do not stress myself out on whether or not my stomach is going to act up that day or not, and if people will hear it. Having mobility also allows for my stomach to digest foods easier than sitting right after eating.

I do sometimes have to make stops at home to relieve myself when certain situations are embarrassing, or when I know my BM is going to be diarrhea. It definitely sucks, but something I have unfortunately just accepted as being a part of my normal life.

After doing research, I introduced probiotics into my daily routine, and stay away from as many fiber foods as possible. I noticed also that alcohol increases spasms, as well as greasy foods. If I am going to go out with friends, I usually will have a cocktail at home so as to get my bowel movement out of the way (and to allow any spasms that may occur a head start) in the comfort of my own home.

Nobody else in my family has it except for my father, who seems to manage it relatively well as to not affect his life too much. I do get frustrated often by it, especially when I have 5-7 bowel movements on some days, but I would rather live as accepting of IBS as I possibly can than be uncomfortable throughout my days. I loved reading all of these stories, and have learned so much from all of them. Just know you don’t have to throw your life away because of digestive issues. It’s all about coping with it, and doing whatever possible to make yourself comfortable. My IBS definitely is not enjoyable by any means, but I just try my hardest to cope with it and live as full of a life as possible.

– Kali

 

 

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 am a 47 year old female. The doctors are in the middle of diagnosing me – and they are leaning towards IBS-D (one doctor has ruled out the obvious culprits and is not ready to give a diagnosis, and another doctor in the practice who I saw on one occasion thinks its IBS). I have NEVER had any issues with my bathroom habits. The diarrhea started a year ago. At first it came on so suddenly, that I was lucky to make it to the bathroom! Sometimes I have the typical pain and bloating associated with diarrhea – but 90% of the time – I do not have any pain. I think that is why the doctors haven’t 100% indicated I have IBS.

My problem is that when I have to go to the bathroom – and it can be any type of bowel movement – not just diarrhea, I have to RUN to the bathroom. It’s like my body is saying – ok – you have to poop – and you gotta go NOW – we ain’t waiting! My other problem is that I feel like I have to go – but that doesn’t mean I actually do go to the bathroom. Stress will make matters worse, but even if I take that component out of the equation – I think that only reflects 20% of the problem. I have to rush to the bathroom (for any kind of bowel movement) on average every other day, with the off days feeling like my stomach is very tight (gurgling, bloating, but no pain).

From what I am reading, diet is a major factor and I am trying to cut back on the fat in my diet. Unfortunately, I am a very picky eater and have lived on dairy (cheese, milk, eggs) all my life! It is very hard to cut those out…

This has impacted my life where I have isolated myself from having a social life. I still go out and enjoy my friends, but not as often I use to. And forget about thinking about dating! I am also going through my changes and have lived with terrible hot flashes that come and go 24/7 – for the last 3 years! I am almost wondering if going through my changes caused the IBS and if the IBS will go away when I get through menopause?

This “thing” has blindsided me, and I just do not enjoy daily life anymore. Some of my friends and family members just do not understand it, and think it’s all in my head, or that I am thinking about it too much, so I am causing the problems to continue… I secretly hope they get a bout of IBS one day! Anyway… this is a great web site…. And it’s very therapeutic to read the stories – so thank you all for sharing.

Name withheld by request

Update to an earlier story:

I am a 50 year old female who has had chronic constipation problems all my life. I remember my mother having to give me a suppository and enema but it would still be so painful to pass and still had to strain a lot. Back in early March of this year I was looking for ways to relieve my constipation naturally without using laxatives and suppositories on a regular basis. I found your article about retraining your bowels. I read it all the way through and followed the instructions carefully and then started myself on a bowel training program.

It helps to keep a food diary and when and what time of day you usually have a bowel movement. Eating a big breakfast with a high fat and fiber content helps to kick in peristalsis very soon after eating. Drinking a hot beverage with caffeine helps too. Then 20-30 minutes after you eat go sit on the toilet for 30 minutes. Read, or listen to calming and relaxing music. Using slow deep breathing exercises help relax your whole body and actually helps you to have a bowel movement without having to strain or force stool out. I have found the deep breathing exercises to be the most beneficial to me . I also increased my dietary fiber to 25-35 grams a day and increased my water intake to 64 oz. a day. I take fiber twice a day, morning and evening. To make it taste better I squeeze fresh lemon juice in it. I use the very early morning before my roommate gets up for work to sit on the toilet for 30 minutes and then I can totally relax and not worry about using the bathroom too long. This also keeps me from having to use a public bathroom later in the day to have a bowel movement. I am totally uncomfortable and embarrassed because of the smell and noise it causes. I do carry a pocket sized air freshener in my purse to use in a public bathroom or at a friend’s home. At home I burn candles or use matches to clear the odor as much as possible. Ever since I started this bowel retraining program I don't have constipation problems unless I don't follow it daily. It has to be daily commitment on my part or I pay the consequences the next day.

– Name withheld by request

I have had IBS with constipation alternating with explosive diarrhea since 1996. I just put myself on a bowel movement retraining program to see if I can control my IBS symptoms this way so I can begin to have normal regular bowel movements every day at a timed schedule to avoid needing to be close to the bathroom. Has anyone with IBS with constipation and alternating explosive diarrhea tried a bowel movement retraining program and have it work for you? At this point I want to have control over my bowel movements and when and where I have them and to have a normal formed bowel movement without severe pain when I need to have one!

Name withheld by request

[Editor’s Note: Read more about bowel retraining.]

I am very grateful for everyone who has shared their story. Our collective experiences help us learn important details about IBS we couldn't learn any other way. Our stories help us to cope and that gives me real hope. I am amazed when I see others who have the exact same issues and reactions as I.

I would be so relieved if there was a pill I could take once a day that had all the nutrition I needed so I didn't have to eat. I have terrible urgency problems that have caused me great anxiety but I try hard to keep my head about it. Many times I have not made it to the bathroom and have had to relieve myself outside someplace out of the way. I can just start the motion of eating and set off the process that leads to a couple of fierce cramps and then uncontrolled diarrhea.

I have a classic set-up for IBS. First, I was a passenger in a motorcycle accident (a deer leapt in front of the bike my friend was driving at 50 mph) leading to seven surgeries on my gut that simultaneously caused and removed adhesions in and around my intestines. I had endometriosis which required a hysterectomy and ultimately, the need for a resected sigmoid colon to get rid of it all. So mechanically, there are significant issues. With my immune system overtaxed, I got Lyme Disease which caused gastroparesis or paralysis of the stomach. After treating the Lyme for a couple of years, the stomach issue resolved almost completely but I believe damage to the nerves was done. I am gluten intolerant and have multiple food allergies. All this has led to a malabsorption problem. Clearly the nerves and sensitivity of my entire gut have been heightened by all that's happened.

Ongoing, my IBS symptoms occur about midday when I have one to two bouts (four on bad days) of urgent diarrhea and the rest of the day I'm okay except for nearly constant bloating. Sometimes I can go for a week with no problem. If I eat poorly I will have a heavy bloat and gas at night. I prefer only one meal a day and little healthy snacks, otherwise in the evenings I feel like I have a lead balloon in my stomach.

I am just trying to create some coping strategies to make this more manageable. My husband is oblivious so it's not hard to keep the details from him and he is not supportive of medical issues anyway. I have not told my friends either (although I guess I could) so I feel fortunate that there is a place to tell my story among people like you who truly understand. Thank you very much for listening and thank you IFFGD for making this possible

– Carol

I have had constipation issues since I was a child. I grew up eating southern cooking, and I did not like vegetables or fruits. I am sure that eating this way has contributed to the situation I find myself living with now. I also am sure that my abusive father could have caused me to have nervousness, which could have caused stomach disorder. I had issues for years; however, it started getting worse in my thirties. I was having more and more episodes with severe cramping followed by diarrhea and severe pain, and the episodes would last a few days. The doctor said I needed to take some laxatives, because I was having weight gain as well as the pain and it was because I was full of stool. I continued to have diarrhea and constipation episodes for years. I have had every type of test you could imagine, and the doctors never seem to think it was that big of a deal. I got the same advice over and over: eat more fiber, vegetables etc. I have tried everything, the doctors have suggested, but nothing ever works for long, if at all.

I was diagnosed with Irritable Bowel Syndrome in my later thirties. I was happy to at least have a name for my nemesis. I started cutting out foods that I thought were causing problems, and at first it seemed the more I cut out the better I was doing, but I ended up just having never ending constipation. I am now forty eight years old and for the last ten years, I have had to give myself warm water enemas. If I do not use them every day I have pain and bloating. I also have started having problems with fissures and hemorrhoids, which is horrible when I am still having to enema.

I have never discussed this with anyone other than close family members, or with women I was seriously dating. When I came across this web page and read some of the articles, I literally cried out loud and could not stop for a few minutes. I was crying because I felt like I was not alone, and others did understand. I have wondered what would happen to me down the road as I grew older, or if I would live a long life, or if this constipation could cause cancer or other issues. But I keep living, and most people who know me think I am completely normal. I never complain or talk about it, because no one understands, and if they did know they would think all I have to do is eat more fiber, or drink more water.

I had a successful business in construction, until the economy took me out of the game. I never had a college education, so it was not easy to find a job, so I decided after filing for bankruptcy, I would need to return to school, and get some type of degree. I have been completing prerequisites for the nursing program at the community college in my home town. I decided to become a nurse, because I want to be able to help others. I do have times when I feel like giving up, because each time I have to give myself another enema, it is a constant reminder of my dilemma. I keep pushing forward, and hope to be a successful nurse in the new future. I will not give up, and I do hope that someone is able to find a way to help all of us who suffer have normal lives. I do appreciate all the people who have shared their personal stories, and know that maybe I am not as good at expressing myself as others, but I do hope that someone will benefit from reading my story, as I have benefited from reading your stories.

– Name withheld by request

Since I was 13 (I am now 20) I have had stomach issues. Beginning in the 6th grade I began to drop a lot of weight from not eating much because everything made me very nauseated. Everyone thought I had an eating disorder for the longest time, but the food really was making me so much worse! Finally, my mother took me to Children's Hospital Pittsburgh for an upper endoscopy and a colonoscopy, to no surprise they were both clear! My issues continued but then seemed to stop. Now for the past 8 years they come and go. I remember from age 15-18 I felt wonderful and was able to eat anything I wanted! However, beginning in the early winter of 2009 my issues seemed to arise from a bout of anxiety. Anxiety was what I was told I had when there was no explanation for my stomach issues, which at the time made sense because I have an extreme fear of vomiting. So, I have been on an SSRI anywhere from the highest dose being 60mg down to 20mg. Now I am proud to say I have stopped the SSRI and realized that what is going on is not in my head! So anyways, since 2009 my stomach has been in and out of spells of nausea. (Nausea and unbearable bloating is/are usually my dominant symptom(s)). In the summer of 2010 I was diagnosed with GERD, which explained the "pukey" feeling I was always getting. Recently, I decided to make an appointment with Mayo Clinic. I had a hydrogen breath test (milk makes me pretty ill for a few days) which came back negative. A normal score is less then 20 and I only blew a 2! I then had an upper endoscopy with a biopsy testing for celiac disease which was clear. I have been to the ER 4 times since April 24th 2011! That is 4 times in one month due to the extreme bloating and nausea I have. Finally, the doctor diagnosed me with IBS. Whether it is more constipation or diarrhea, I couldn't say. It definitely began with more D then C but now it seemed to be switching to C! I have cut soda-pop out of my diet completely and try very hard to stay away from large amounts of fried foods. I also steer clear of milk but I find I can tolerate cheese and sometimes ice cream in smaller amounts. (Thank goodness because alfredo is my favorite!!) I began eating probiotic yogurt today in hopes of making myself a little more regular. My mother has also had "stomach issues" for as long as I can remember. Nice to know that I am not alone in this. I feel like such a baby when I complain about nausea/stomach pain/ bloating all of the time but I just can't help it! Hope everyone finds something that at the least relieves their symptoms to some degree. Lets all pray for a treatment to end the suffering and keep our heads high!

Name withheld by request

Hi, I am 59 years old and I have been fighting with IBS for 10 years now. I went through every test a doctor can give you, and with all their questions answered they told me I had IBS, there’s no cure. I have a very hard time keeping it under control. Whether I eat or I don’t eat, the symptoms just tear me apart. I can’t go out, I don’t have much of a life. My symptoms are diarrhea, constipation, terrible pain, bloating, stomach pain, hot flashes. They are very bad. I find my breath smells too and when I am having an attack I hate to talk to anyone. It definitely makes your life a living hell, sometimes I wish I did have a disease they could help me with. I go to doctors, and do as they ask, come home with prescriptions and pain medication. I find my pain meds help calm everything down so I ask for them. I hate being in pain. Thanks for reading my story.

Bonnie

I am 50 yrs old and have suffered with IBS since I was a teen. Dating and traveling were almost impossible. I tried out for band and made it, only to have to give it up because I couldn't ride the bus to games because of the diarrhea that would hit without notice. I have been able to live with it, but I don't enjoy life to the fullest because of stress of not having a bathroom close. I almost cancelled my wedding and eloped because of the fear I would get to the alter and have to go to the bathroom. Thank goodness Imodium has worked miracles for me.

I have a wonderful husband and two children, and up to this summer neither had IBS. But my 15 year old daughter started to have severe stomach pain which the doctors thought was just school anxiety from exams. After all summer, still having the pain and every test they could do, they found her gallbladder was only working 2% so they removed it in September. The pain from the gallbladder is gone but now she has a new pain after she eats and in the mornings. She had a colonoscopy this week and found no problem so they say it has to be IBS-C. This might have been brought on by the pain medication, which caused the constipation, which is so painful that she lays in the floor with pain and cramps. She has missed so much school that today we had to enroll her in a school online. She was unable to sit in class because of the pain, and the anxiety only caused the pain to get worse. I don't want her to suffer the same way I have for years. Surely they can find a cure of IBS. She does eventing with her horse and has missed a whole year of showing because of this pain. Right now they have her on a probiotic and an anticholinergic and a laxative once a day. The only thing I know to do is to treat the anxiety now, which really scares me with all the medications they might put her on. Prayer is the only thing that has got us through these past 6 months. I know that we aren't alone but it seems there is no answer either.

Kim

I am 55 years old. I have been suffering with IBS for over 30 years. I wasn't diagnosed until after going to specialists for over 10 years. But... getting the diagnosis hasn't helped one bit. The medications that I have tried have not worked. Nothing that I have read about has helped. I have constant pain and discomfort. I have some kind of reaction from most foods that I eat. So, I have eliminated all but a few things from my diet. Some times even just the act of eating brings on an episode. This has impacted my life so totally that I don't want to do anything any more. I only do what I have to do - that's it. My husband has been so understanding. But he is the only one and even at times his patience wears thin. You can't have friends when you have this disorder. I have had to lie and make excuses so often when I have to back out of plans that I just don't make plans any more. It is so hard when you can't eat. It is so hard to feel sick every day. It is so hard when there is no hope of anything getting any better.

Linda

I sympathize with all of you who have IBS. I also have acid reflux. When I get an IBS attack it moves right up and causes reflux. I have been seeing a gastro doctor who is trying to help me. Sometimes medicine works but other times it doesn't. I am a nervous person and also have TMJ. Some days the IBS is worse than others. I haven't been going out to eat because I'm afraid if I eat the wrong thing I will get diarrhea and the bathrooms will be full. I wake up in the morning and go to bed at night with gas and sometimes bloating. I wish there was a cure for this disease.

Sue

I'm 22 years old and am in the process of being diagnosed with IBS, I have a hospital appointment in a few weeks to out rule anything more serious but the doctor is sure I have IBS. I cant believe how IBS has affected my life! It started back in July and after one extremely embarrassing incident it never went away. It was my sisters christening in Yorkshire and my uncle drove my auntie, brother, boyfriend and myself there and back in one day. A culmination of the stress at seeing relatives I haven’t spoken to in a long time, a few boozy drinks, my dad’s wife’s polish spiced buffet and a cappuccino at a rest stop resulted in me having to get my uncle to stop on the hard shoulder so I could relieve myself behind a bush (we were only 4 miles from the next stop) we then had to stop at every roadside bar/restaurant through London, everyone was really understanding but it added hours to our journey and meant a lot of tears and apologies from me! Around the same time I left my job of three years and moved house and started my long summer break from university. My irregular bowel movements have continued and the urgency is completely overwhelming, this has meant I’ve spent a lot of time on my own at home and can’t commit to any plans/ nights out. Cab journeys onset a huge panic and I often find myself frantically searching for the nearest toilet whilst out with my boyfriend/ family. At a gig I went to recently I wasn’t comfortable using the toilet in the bar as there is only one and I knew people would be waiting outside while I used it so instead I had to leave the venue four times and power walk to the nearest train station where there was a large public facility. Traveling has become an issue, I panic when I'm on the bus or a long train journey, especially if there isn’t a toilet that I can use, the panic onsets the need to use the toilet and the memory of the hard shoulder incident makes it a lot worse.

Before now I have been super active and had really full days without really having a break between school, work and socializing. This summer has been the worst! I haven’t really done much and have felt pretty uninteresting! I've had quite a few job interviews and have had to cancel a couple due to an IBS attack, I had to walk out of a hair appointment last week because the thought of being stuck in the salon mid cut caused me to panic and need the loo! Thankfully I have a really great boyfriend and a hyper active dog that wouldn’t allow me to sit next to the bathroom all day!

– Name withheld by request

I've had IBS since I was 4 years old. I'm 38 now. Two yrs ago I had an accident where a tree hit me. It broke my left hip and tailbone and shattered my right hip and pelvis. Since then my IBS has become so painful I can’t bear it. I'm on so many medications with no relief except for the diarrhea, which is also the problem. Do I have to live the rest of my life like this? There has to be a solution.

– Trish

I have been recently diagnosed with IBS. It is predominantly diarrhea. It happened after a stomach infection. I am taking an anti-diarrheal when I have a flare up and hyoscyamine for the pain. I am new to this and trying to read as much as possible. I lost 15 pounds because I’m afraid to eat, my meals are rice and chicken pretty munch. I am late to work every morning because of the discomfort. I am sad to know that my life is going to be like this. I am single and live alone so it's more difficult to forget about it. Just wish I could be the same as I was before my infection two months ago. I would like to meet people who have this and get some support. Hopefully I can do it through this website. Thank you.

– Claudia

I have been diagnosed with both IBS-D and Interstitial Cystitis with chronic pelvic floor dysfunction. If one isn't flaring up the other one is. Like others who have shared their story, I have a constant need for bathrooms. My 89 mile drive to work makes this difficult as do my somewhat irregular hours. Every day I have to plan my route around the placement of bathrooms along the way. I can go as many as 5 times in the course of an hour.

I have been taking probiotics which seem somewhat effective, and an anti-diarrheal. I suffer from really bad flatulence which is especially bad after a day of sitting behind the computer. I have recently started body building again. There was a time that I was unable to do anything due to the pain and the lack of energy from medication I was on. The medication was supposed to help control the pain from the interstitial cystitis. I was so over medicated at one point that I was close to 187 lbs and on blood pressure medication. I decided to take control of that situation at the beginning of last year. I slowly weaned myself off the medications, lost 38 lbs and lowered my blood pressure. I know there's no cure for this horrible disease and I'm sure that people have no idea how embarrassing and uncomfortable, if not downright painful it can be. I have to miss quite a bit of work due to this.

So far I haven't found a magic bullet. Stress remains constant at work and I have very little control over that. I’ve yet to find dietary modifications that help. I'm seriously considering disability but I know that's a long hard road. I have a combination of very painful diseases all in the lower part of my body. So far the only thing that gives any relief from the cramping and bloating is valium in small doses. I'm constantly searching for something that will help get this under control, but haven't found anything yet.

– Name withheld by request

I was diagnosed with IBS about a month ago. I am 46 years old so I am pre-menopausal and I find that when I get near or have my menses the symptoms are worst. I have constipation mostly and occasional diarrhea. I have lost about 5 to 7 lbs because I am nauseas some days and can't eat. I have a constant pain in my left side and around my back. I sometimes just feel spaced out and tired. People tend to think you are crazy. I just want to lay down all day but can’t because of work and family. I have a medication that the doctor gave me but I really haven't seen any difference so I don't take it like I should. Is this my life for the rest of my days?

– Name withheld by request

I have had IBS for about 7 years. I have an increased urgency that generally lasts from when I wake for a few hours. Some mornings I go 3-5 times in a few hour period. The main problem is that I can go from feeling fine to having a large movement in a matter of 5 to 25 minutes. Needless to say this makes my mornings very restrictive. I feel that my symptoms are brought on in part by stress, and acutely by the stress of having to be near a bathroom throughout the morning. Diet has not had a very noticeable impact. I would like to try the antibiotic Rifaximin but the prescription was $800.00. It is frustrating and I believe I need to reduce my stress in order to see some relief - easier said than done.

– Mike

 

 

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 have been diagnosed with IBS. I only have the diarrhea, but it is like a water faucet being turned on when it happens. I have had more than one "attack" at work and have had to go home. Luckily I am on FMLA so my employer cannot fire me or mark against my attendance when this happens. But I also don’t get paid for the days I have to miss which is making it very hard financially. Sometimes I miss just because the pain or shaking is there in the morning as I’m getting ready for work and I just don’t want to take the chance that I will get to work and have it happen. Sometimes it doesn’t but not knowing for sure terrifies me and I don’t want to go and maybe be embarrassed again! I wish I could control that fear of it maybe happening, because I can’t be at work if it does but I also can’t afford to not go to work. And since stress it what triggers my IBS that only makes it that much worse. Wish there was a cure - I take meds but they don’t always control it.

– Name withheld by request

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

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

[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.

I am an 18 year old guy and a senior in high school with a diagnosis of IBS. It is hell dealing with this. I always have to go but I only go about 3 times a day. I am on some medicine but it only helps when I am not going to school like on the weekends. When I have to go at school I have to hold it until I get to a certain class because some of my teachers wouldn't let me go to the restroom. So I went to the nurses and told them about my IBS and I got a pass that makes the teachers let me go when I have to.

Reading these stories really makes me feel better because it lets me know that I am not the only one out there with this. It makes me wonder how many people in my school have the same problem.

– Name withheld by request

I am 18 and about two years ago I met my boyfriend and we started dating. Almost immediately after I started getting these IBS symptoms and constantly running to the bathroom. Six months after dating he enlisted in the military, which I believe made my IBS worse. I read some of these stories of the people who have IBS with constipation, I would trade for that any day. In the beginning I thought I had colon cancer or something and after a year of having gassy diarrhea at least 10 times a day I went to the doctor. They did $1,000 worth of blood tests and checked my stool for parasites and found nothing. I cried in front of my doctor because finding out absolutely nothing was wrong made me feel even worse. I was leaving for a vacation in a week to the Caribbean and I wasn't even excited.

I went through another year of dealing with IBS and finally went to a gastroenterologist. He checked my blood and stool again and found a parasite. I was so happy thinking he solved my problems. He gave me medicine and while on it I felt how I did 2 years before for the 3 days I was on it. Then the symptoms came back. He diagnosed me with IBS and nothing is working. I've changed my diet and everything. I've lost all hope and I completely gave up on myself. I don't want to work, finish college .All I want to do is stay home near the bathroom. This constant worrying completely changed me. I miss the old me who was excited to go out with my friends and party, and go on vacations, or even a bike ride. But I can’t do anything anymore, and reading these stories and knowing there is no cure makes me lose all hope. I want to go to yoga or the gym to take my mind off it but then I go and have to use the bathroom.

I don’t know what to do and I definitely don’t want to continue living like this. I know it’s all in my head and its crazy because I want it to go away so badly but I still have it.

– Name withheld by request

[Editor’s note: Certainly your IBS is not "all in your head" and while there’s no cure, that doesn’t mean there’s no treatment (http://www.aboutibs.org/site/about-ibs/management/). IBS is a complex condition. When IBS is severe it takes time and possibly an expert team approach to bring symptoms under control.]

I am 18 years old, and have been dealing with the every day stresses of IBS since I was in fifth grade. I am socially withdrawn because I can't engage in normal teenage activities. My friends get disappointed when they invite me places and I don't go. They don't understand the anxiety it causes me to just go to a movie. I have lied about being busy to get out of going somewhere out of fear of getting sick. Going out is not worth the risk of embarrassing myself and ruining everyone else's good time. I am literally a “Party Pooper”. So, I sit at home, dealing with the extremely painful gas and cramps on my own, while other people my age go out and have fun.

Worrying about getting sick stresses me out further, which ironically makes me even sicker. When something important comes up, the nerves set in and all I do is give myself cramps from the anxiety of maybe getting sick. I try not to get too upset when I am sick, but it's tough not to feel sorry for yourself when the pain sets in and you feel alone and miserable. I have even told myself it'd be better if I hadn't been born.

But lately I've been doing all the research I can to help make myself better. I have simethicone (pills for gas). I use it for when I get my painful gas attacks. Antispasmodics didn't help me any. I recently bought a soluble fiber supplement to add to my diet. It's supposed to help both IBS-D and IBS-C...We'll see. I haven't been brave enough to add it to my diet yet because I know the first few days will make me gassy and uncomfortable.

I think I will always have to deal with IBS. Some days I get depressed and wonder “How will I make it through college?” “How can I be a nurse?” and “How could I ever be a good mother in the future?” But the only thing that seems to help me through these thoughts is to take it one day at a time. I think that's all any IBS sufferer can really do. I try to tell myself that these are the cards I've been dealt, so I have to make the most of them. Somehow, I believe things will be okay. I just have to take one step at a time and take life as it comes. I am beginning to realize I can't control what happens to me, but I can control how I let it effect my spirit. I hope all IBS sufferers will someday find the answers we've been searching for. We just need to stick together and know we aren't alone.

– Name withheld by request

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

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

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 about helping a child with a painful bowel disorder in going to school, using the bathrooms, and interacting with teachers and classmates. 

 

– Name withheld by request

 

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.

I am 56 years old and have had stomach problems for as long as I can remember. The IBS-D problems have been getting much worse. I am so depressed and anxious about it that I cannot do anything without the fear of having an accident. So many milestones in my life have been ruined for me because of my problems.

I have tried SO many different medications and nothing has helped. I take loperamide in advance with hopes that it will help when I have some event I cannot get out of. I work full-time in sales, so I have to be out and about dealing with people. The anxiety is the worse and that triggers the diarrhea. When I have to go, there is no holding it. So embarrassing.

First thing I do when I have to go somewhere, is find where the restroom is and I don’t stray far from it. Such a horrible way to live, that it really is not living at all. I thought about giving up my job and trying to get on disability, that is how bad it gets. So sad and depressing. I have a very understanding husband and he is my support. PLEASE if anyone has any ideas where I can turn for help with the stress and anxiety please respond to me.

Name withheld by request

[Editor’s note: There is a growing understanding of how “symptom specific” anxiety and depression may be triggered by symptoms, and in turn themselves trigger symptoms. There are treatments that can break this vicious cycle of emotions and GI symptoms. Find out more here.]

I am a 27-year-old, with a belated diagnosis of IBS two years ago, alternating between diarrhea and constipation, graced by their friends--cramps and gas. The hardest part of this burden is feeling disappointed with my body. The constant canceling of plans so that I may stay close to a bathroom or being hindered by the sheer pain of cramping wears on me and those surrounded by me. Many days, I make grand plans to go swimming or to jiujitsu, or even just for brunch with friends but find that I am unable to go because of one embarrassing symptom or another. At varying points, the people around me begin to question whether or not the discomfort is real or exaggerated. I am being followed by a wonderful GI doctor and taking medication to help mollify the symptoms but with every failed attempt with this journey of trial-and-error , I get a little bit more discouraged. I've become obsessed with (and slightly fearful of) food. The idea of a 12-hour workday when I'm feeling subpar the night before is stressful. But, I'm not ready to give up yet; I don't have delusions about a magical cure but I look towards the day when I finally learn to manage my IBS. In the meantime, all I can do is to continue joking about my symptoms.

Name withheld by request

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

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

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

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.

When I was 24 years old and engaged I suddenly got a pain in my stomach that wouldn’t go away. My dad was a GP and he said go to the doctor. She diagnosed Spastic Colon (Yes that is what IBS was called in1975!) She gave me colofac (an antispasmodic, which shows how old a medicine it is).

Since then on and off I have suffered with IBS-D. Throughout my life stressful periods have caused the most horrible flare ups with plenty of accidents but I have come to terms with that.

I think my biggest fear is what is this, really. I have had blood tests examinations etc., seen gastroenterologists, but nothing appears to be wrong with me. However in September I had the worst gut infection ever on holiday and I have had the worst flare up ever. I suppose my biggest problem is fear because I also have panic attacks. Fear of what is going to happen fear of the IBS. My husband also has IBS but he just gets on with it saying he just has a bubbly tummy, dashes to the loo, and gets on with life. I really wish I could be like that.

I am undergoing hypnotherapy which does help and CBT which also helps. Perhaps we should all just hope that one day something will be found that helps all of us.

– Name withheld by request

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

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

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

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

 

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 just got diagnosed with IBS after so many years of suffering. I was the one who told my doctor what I think I have because I was tired of him saying that it was probably what I’m eating and should lose weight and I would feel better, but I am only maybe 15 lbs heavier than my height and weight should be. I went online and researched my symptoms and my niece has IBS, so I checked into it and what do ya know....all my symptoms were right there in black and white... I printed it off and took it to my doctor and he scheduled a scope and some other tests and finally I am diagnosed. I am, however, having problem with my diet and what upsets my stomach so does anyone have any suggestions? Thanks for any help you can offer.

Tessa

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

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

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

 

 

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 have had severe IBS since I turned 15 years old. It's been 19 years and back then they didn't know much. The symptoms were so severe I developed agoraphobia (fear of public places). The two illnesses feed off each other until I can not tell one from the other. I take an antidiarrheal 3 times a day and an antidepressant for the agoraphobia and a sleep aid at night so I can relax. I have no life, and I'm a single mother of two. I often feel guilty because I can't give my children the lives they deserve. I would like to know if others have developed agoraphobia due to the unpredictable symptoms of severe IBS with diarrhea.

Rebecca

[Editor’s Note: Many others share this experience. Anxiety may be general or specific to symptoms. "Symptom-Specific Anxiety" can be provoked by chronic, unpredictable GI symptoms like those that occur with IBS. It’s characterized not only by increased attention and worry about GI sensations, but also by avoidance of situations that may be associated with symptoms and the strong desire to limit activities to safe places. However, these actions, rather than limiting anxiety as hoped for, tend to increase and prolong anxiety overall. Various treatments may include cognitive behavioral therapy, hypnosis, relaxation techniques, and medications or a combination of approaches. Find out more on this topic from IFFGD Research Award winner, Bruce Naliboff, PhD. Go »]

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

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

 

 

 

At a loss

Tips on Talking to your Doctor

    An effective doctor-patient relationship is an important part of managing IBS symptoms effectively over time. Here are some tips and tools to help you »

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 which can be found here.

I am a 63 year old woman that has had stomach and intestinal problems for most of my life. I was formally diagnosed with IBS 4 years after testing was done. When this disease flames up, it controls my life. I start out feeling shaky, a little irritable, and then the stomach spasms start. They are so painful, I am afraid to leave the house. I cannot sleep at night, have twitches, am sensitive to sounds, sweat profusely, and feel like I'm going down a black hole. I can't swallow. My arms feel numb, and my torso very tight. I've tried to do all the conservative things they tell you to do... proper diet, less stress, exercise, but nothing works. I hate going to the doctor, so try to live with the flares, and tell myself, this too shall end. Usually, with me, a flare up lasts about 8 days. I never know when it’s going to happen. Not consciously anyway. One day its diarrhea 10 to 15 times, the next day is constipation so bad, you feel like you are going to explode. The shakes, the lack of sleep, the feeling that you are going to die, all are miserable.

I've always been a person that kept things to myself. This disease is truly a living hell. The sad thing is, that when the symptoms subside, it takes me a week to recover. I always know that it will be back. Finally, this morning, I went to the doctor. I have been sick, really sick, for a week. He prescribed for me an anti-spasmodic medication. I'm going to pick it up. I hope it helps. This is the worst thing I have ever gone through. It causes you to lack self-confidence, be insecure, and, basically hate yourself. I don't want to leave the house. My husband tries to be understanding, but I can tell it annoys him. What helps the most is to be very quiet, keep on the same routine, not go outside, and tell yourself you will not die. It will go away. I'm just afraid this might kill me someday, even though I have read it won't. I just can't imagine myself handling this in my 80's if I'm lucky enough to make it. I am hoping as I age, it will go away. So far, not happening.

– Name withheld by request

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

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

 

 

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 always been very emotionally sensitive to sounds, stress, challenges. I became chronically constipated as a young child in the 1950s. My mother gave me a stimulant laxative. By the time I became a teenager, I couldn't have a bowel movement unless I took a laxative. So for the last 50 years I took stimulant laxatives. I had seen many gastroenterologists who all recommended that I get off laxatives. I tried, but couldn't have bowel movements without them. I started having constant pain in the pelvic area in my mid-fifties. None of the doctors knew what was causing it.

Finally, after reading a lot and going online I found out my pelvic floor muscles were going into a spasm, thereby causing the pain. This was happening because of the forceful action of the laxatives. I stopped taking the laxatives and used enemas. Now, I use an osmotic laxative. It helps me. I have very slow motility. It takes 4 to 5 days for the fecal matter to move through my intestines...even with the osmotic laxative and I have lots of gas.

I have gotten the most help from alternative therapists that work with the whole person rather than just one part of the body. I also found that taking care of my stress level helps a lot. Find a "Mindfulness-based Stress Reduction" program in your city. They can help you learn how to calm yourself down when you are upset, through meditation. This has helped me take control of my reactions and live a less stressful life. My condition is much better now.

Sharing one's story is a great gift in helping others. May all beings be at peace.

Name withheld by request

First off it's comforting to know I'm not alone. I started having GI troubles when I was 17, a senior in high school. I found out 7 months later, after increasing pain daily, developing anxiety and dropping out of school, that I had a non functioning gallbladder. Had it removed but it I didn't get much better. It took away the severe pain and I could eat again but I still had abnormal bowel habits and got a new abdominal pain.

I saw a couple GI doctors in town going through a myriad of tests; x rays, CTs, endoscopies and colonoscopies, small bowel series, blood tests, etc. All that ever came of it was one of them noticed slight irritation during the colonoscopy, but nothing to warrant any diagnosis. Finally one of them felt he didn't know enough to help me so I was referred to a Gastro at a teaching hospital out of town.

Been seeing him for two years, doing repeat procedures, trying medications with little to no result. It was getting really frustrating having to drive 3 hours both ways for a 15 minute appointment. Finally at my visit (4 years after all the trouble started) last week after having gone a little more in depth with him about my symptoms and him conferring with his colleagues he feels I have IBS-C. It hasn't been a confirmed diagnosis yet as he has a couple tests he'd like to run yet but it seems to fit.

I had been looking in my off time to see how my symptoms compared to other GI disorders (Crohn's, UC, etc) they were similar but never quite matched it. After having read the stories on this site and others I'm confident I finally know what I have, which itself is a HUGE relief. Knowing is half the battle.

Now I need to focus on controlling my symptoms. Something I've neglected for the most part these last few years. I would eat and drink what I want which often ended badly, but I was at home so it was of little concern. Now that I'm trying to get my life back on track I really need to focus on what I can and can't ingest. On top of that I have an issue with using public restrooms; something I've had issue with my whole life. Furthermore when I have a BM I'm usually in the can a good hour to hour and a half. I don't want to tie up a public restroom that amount of time, I won't even do it at family/friend's home. Even worse, is I have the anxiety that many seem to have along with IBS, but for me I have to shower after a BM. Not matter how thorough I am, it's just not enough.

I hope my story helps others as theirs have helped me. Just remember you are not alone.

– Name withheld by request

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

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

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

 

 

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

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

[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 about dietary fiber.] 

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 about IBS Diet.]

– Jacinta

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

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

[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.]

Ann

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

Further Reading

 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

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

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

 

Last modified on March 12, 2014 at 03:21:18 PM