Courageous Stories: New
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
August 27, 2010
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 I am socially withdrawn because I can't engage in normal teenage activities.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
August 21, 2010
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
August 12, 2010
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
July 4, 2010
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
June 30, 2010
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
June 10, 2010
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
May 28, 2010
I am 39 years old and have lived with IBS now for 7 years. Until that point I thought I had just about conquered everything that involved pain, from a C-section to kidney stones. I believed that kidney stones were the most horrible thing to have to deal with. I found out I was wrong when I got IBS!
I have now been on medication for the IBS for the last 7 years and recently underwent another colonoscopy because the diarrhea had only gotten worse. I lost weight and was nauseous all the time. I wasplaced on yet another medication to see if the symptoms would decrease but even though they have I still find myself not being able to eat certain foods. I can eat the same thing 10 times and then all of a sudden I can no longer eat it!
The only thing I can tell anyone with this is just to be strong and have faith that if you can get thru this on a daily basis you can get thru anything.
– Tuesday
April 7, 2010
I would like to reach out with some encouragement for the many people who have shared their stories. I have been an IBS sufferer for 38 years. Through the support of my physician and my stress management doctor who specializes in cognitive behavioral therapy I have wonderful resources that have helped me learn how to live with it and how to handle major flare ups. Yes, it can be a vicious cycle linked with stress, but help is available. What has been huge for me is that IBS is finally coming out of the closet and getting recognition for the valid medical disorder that it is. Until recently the shame of IBS was incredibly overwhelming for me. Now that its recognized by the general public that so many people have it, some of the stigma has been removed. I encourage everyone to be proactive with your physician and with finding psych support. Together they can be very effective. Give yourself a pat on the back for battling IBS and advocate for studies and increased treatment options. I'm working on accepting that I have IBS and deal with it to the best of my ability, and that everyone else will accept that too. Society doesn't condemn people struggling with diabetes, high blood pressure, etc. - this condition is no different and the social stigma is going away. Try to stay positive and surround yourself with positive people who understand your situation - and be ok with what your limitations are. Sometimes I just have to turn it all over to a higher power, when I'm feeling overwhelmed, and somehow its always worked out. We're stronger than we think.
– Julia
January 16, 2010
I don’t remember exactly when I began noticing IBS symptoms, but I can recall an incident from the 8th grade: I was sitting in class, experiencing intense and unrelenting gas pains, feeling like my gut would explode, and trying to act like it wasn’t MY “stomach” making those strange noises. For a shy adolescent in a new school, it was a painfully embarrassing incident. Unfortunately, it was only the first of thousands that I can recall. For most of my 50-something years I have not talked about my problem. Gastrointestinal problems aren’t the kind of thing one wants to discuss on a date, with colleagues, or even with friends and family. At most, I had "a nervous stomach" or certain foods "didn't set well with me."
Because I didn't talk about the problem, I felt isolated and never knew that others shared some of my experiences with IBS. And I didn’t know what to call it until I was finally diagnosed just a few years ago with IBS-C.
This is what happens to me during a typical IBS Attack: I begin to feel gas building up, then comes the discomfort, then the sharp pains, followed soon by a feeling of urgency to get to a bathroom. Once there, I sometimes immediately have a bowel movement, usually “explosive” in nature (making me very glad the toilet was only steps away!), but sometimes nothing happens. Those times, I go back to whatever I was doing until the urgency returns, usually within minutes, so I stay close to the bathroom. Most occurrences result in several hours of alternating between bed and bathroom. While on the toilet, I typically begin to perspire, eventually to the point where sweat pours down my face, and my whole body becomes sweaty. This will continue for a few minutes, during which time I’ll have a bowel movement. The times when I’ve been constipated are the worst: the buildup of waste in my gut over a period of weeks results in terrible pain and strain in trying to get it out. It is hard and pellet-like. It gets to my rectum and stops! This is the most embarrassing of my secrets about IBS: often, I have to “dig it out” with my finger in order to get things started moving. (If I don’t, I end up sitting and straining for an hour or more, so that I now have hemorrhoids.) I keep a container of Vasoline nearby to lubricate my finger. Even without the existence of constipation, however, I sometimes end up sitting and straining as I experience colon “spasms” that last for 30 minutes or more. Eventually, I feel it is safe to stand up. Then, damp and dizzy, I stagger to my bed and collapse, suddenly freezing, until the next wave of pain and urgency hits. This will usually happen within 5 minutes. I race back to the toilet, sometimes just in time, for another BM accompanied by pain, sweat, dizziness, and often nausea. Because I can’t get up to vomit into the toilet, I have a plastic trash can standing by. If I’ve recently eaten, it all comes up and I may vomit numerous times over several minutes. Even with an empty stomach, I’ll vomit bile for several minutes. I believe it’s the pain that makes me nauseated. When I feel it’s safe, I’ll go back to my bed, although there have been many times I’ve gotten on the bathroom floor, until I have to get back on the toilet. After I’ve gone back and forth for several hours, the worst of the attack will be over. Then I must stay in bed, usually freezing and feeling weak and exhausted, for another hour. I can’t seem to get my hands and feet warm and, even though I’m hot-natured and typically keep the A/C turned down to 65, I’ll crank the heat up until I return to normal.
Stress is definitely a trigger but not the only one. Certain foods and drinks, when and how much I eat, lack of sleep, fatigue – all triggers. Sometimes I'll eat nothing but Saltine crackers for days, and still have an attack. Maybe it’s my imagination, but symptoms seem to be getting worse as I head toward my 60’s - there are more occurrences, and the length and severity of attacks seem to have increased, too. Could it just be that the normal problems of a 50-something body - weight gain, arthritis, insomnia, menopause – are magnifying IBS? My life is stressful and more complicated these days, so maybe that’s the reason. Anyway, living with IBS is a humbling experience, a total lack of control over your body and your life. IBS is debilitating, humiliating, and painful. There’s no cure, little to nothing can be done to counteract or even control symptoms, and I wouldn’t wish it on my worst enemy.
– Name withheld by request
January 8, 2010
I have been suffering with IBS for 15 years. The pain can be almost unbearable most of the time, and at times lasts for 3-4 days. I had 3 children, all natural deliveries, and I tell you this pain is far worse than labor. I take anticholinergics, acetaminophen, laxatives, fiber supplements, and have had to take benzodiazepines when I cannot sleep because of the pain and anxiety that it causes. I am a nurse, and when it comes on suddenly while I am at work, I can barely stand up, never mind walk. I have to take my medication and put hot packs on my lower abdomen before I can go back to work-this only helps once in a while. I also have diverticulitis. Any suggestions for this pain?
– Name withheld by request
January 6, 2010
[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» ]