Courageous Stories: New
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
January 4, 2012
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
December 13, 2011
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 an 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
November 11, 2011
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
November 9, 2011
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
October 25, 2011
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
October 21, 2011
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
October 8, 2011
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
October 8, 2011
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
October 4, 2011
[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 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
August 12, 2011
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
August 11, 2011
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
June 13, 2011
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
May 28, 2011
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
May 25, 2011
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
May 6, 2011
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
May 6, 2011
[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 »]
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
March 28, 2011
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
March 27, 2011
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
March 6, 2011
[Editor’s Note: Read more about bowel retraining here.]
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
January 8, 2011