Share your experience of living with urgency, soiling, or incontinence – it can be therapeutic for you as well as others who suffer.

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Searching

For many persons, living with a bowel disorder 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.

Out of the blue at age 58 I started having fecal incontinence and would wake up in the middle of the night in a large puddle of diarrhea. This went on for 6 years. I lost a lot of weight and saw a lot of doctors and was treated for SIBO. I was on antibiotics for 4 years. I then upped my probiotics and the diarrhea stopped, but then I started getting considerable pain after a bowel movement. Now I have to stay at home because of the pain and if I eat something (never really know what - keeping a food journal) then I have a day of what I call "never trust a fart."

I am now retired and would LOVE to have the life I worked so hard to attain, but am stuck close to home for fear of incontinence. It still strikes. It is not an easy thing to explain to people, so I have lost a lot of friends. I have never felt more alone and sad. Thank you all for being here. I hope there is more healing ahead.

– Name withheld by request

In 1977 I was diagnosed with squamous cell carcinoma of the vaginal vault and treated with what, was then, an experimental from of radiation (linear acceleration).My cancer was stage 4 invasive and I was told that I had let than 20% chance of survival. They later told me they had given me too much radiation but they could do but treat my 'side effects'. The treatment damaged my bladder (shrunk it to approximately the size of a 3 year old child.) my intestinal tract underwent much internal blistering and scaring, making it impossible for me to get the nutritional products I needed from my food. I could only have low fiber products because high fiber would damage my intestines on the way through my body.

My gall bladder had to be removed, and needless to say, due to the female anatomy, a soiled, liquid-feces diaper caused massive UTI's as well. On a normal day I go through 18 to 20 overnight diapers. Now I am on Humira and can't tell if I have bad side effects or not. I have 2 different types of arthritis, etc. and am bed ridden a lot of the time. Cleaning myself is very difficult and now I have “diaper rash” so bad my behind resembles a baboon's it is so red and is very painful. I have many drug and food allergies and it is difficult to find anything I can get that won't be regurgitated or evacuated within 15 minutes of ingesting it. I take lomotil 2 or 3 times daily, but still have liquid feces running down my legs without warning. Any advice?

– Name withheld by request

It doesn't seem to matter what I eat. If I eat a sandwich or more, I may have an urge for a bowel movement while eating or very shortly after. I usually need at least 3-4 more bowel movements within the next hour after the first movement. This makes traveling - even locally - very awkward. I take meds for seizures and for heart problems, but the GI problems started years before any of this. Fiber does nothing special for me. I've had some blood tests and a colonoscopy and so far all is ok. I am going to have a stool sample test, and may do an upper GI test next. Does anyone share my torture?

– Louis

It gives some sort of comfort to know I am not alone in what is sometimes a living nightmare. I have suffered from bowel incontinence for 15 years now. The tests revealed a very damaged sphincter muscle, of which I had a repair done with the promise of complete success. Unfortunately it was quite the opposite and was completely unsuccessful. How do you live with this? I really have not worked it out yet, or even know whether I can live like this...... I have tried to separate the "problem" from myself and who I am. This works to some degree, but is still a problem never the less. I feel for you all so very much and wish I could give you all a hug in person.

– Name withheld by request

[Editor’s Note: Over the last few years IFFGD and others have been actively working with the National Institutes of Health (NIH) on a national awareness campaign around bowel incontinence. The “Bowel Control Awareness Campaign” was introduced this month along with a website at http://www.bowelcontrol.nih.gov/. The campaign is aimed at both the public and health care providers. We continue to work to support education and research around this condition. Thank you all for sharing your stories and for helping us in this effort.]

I have had fecal incontinence for 7 years. Mine was caused by childbirth. I had sphincter surgery that went bad 6 months later. I also had a reversible colostomy bag for 14 months I just could not handle it.

This is really hard to live with but my doctor told me I would have to live with this the rest of my life. I know how you feel, I live with this everyday of my life and I am homebound - I don’t go anywhere. I really don’t talk to anyone about this but I’m glad I found this site so I could share my story. I feel the way a lot of you do. I can’t even have more surgeries because I've had too many. I just only wanted to get better. I am 39 years old and though I try to deal with this problem its just so hard to do.

– Sandra

I am 33 years old and I have lived with Hirschsprung's disease all my life. I have suffered for years having to wear pads. I had several surgeries as a baby and the doctor cut through my muscle, which has caused me to have no control over my bowels. I was teased, humiliated, isolated and confused growing up. My childhood is a blur and most of my memories are those of being hurt/teased by others. I have a lot of trust issues and question "why me" plenty of times. I am in a relationship, but it has been difficult due to intimacy concerns.

I recently went to see my doctor about possibly getting surgery because having a relationship is very difficult....being intimate is always an issue, a plan, a big deal. I am scared to have children because I have read they have a 50% chance of inheriting the disease from me and they will also be at risk of having other complications such as Down Syndrome.

My doctor referred me to a physical therapist where I was given exercises to increase control of muscles in my rectum. I have just started this journey and it has given me a little bit of hope. It took me a couple of cancellations before I even agreed to show up...too embarrassed and too worried that it would be all for nothing. The PT did tell me that if I do have children I will have to be monitored and I will also have to give birth via c-section (made me a little sad). I would love to feel "normal" (I have imagined what normal is all my life), be able to go just one day without having to wear a pad and not worry about what I eat or going out to dine....I have tons of stories about not making it to the bathroom in time.

Through all of my years in living with this disease I have become a strong individual that works hard, does nice things for others and is always compassionate...so I guess some good has come from it all. I would love answers, but the research shows that not a whole lot is known. I can't find anything about having children (risk factors) other than the advice to get genetic testing. I am getting older and it would just be nice to be "free". Maybe one day...

– Katrina

Control

Managing 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.

My story started when I was only 8 years old. Many upper GI tests, but in the 80's they were not really looking or thinking along the lines of Crohn’s disease. More problems in 2009 and in the hospital with severe dehydration with the diagnosis of colitis. Upon going back to work I kept getting c-diff as well and making multiple runs to the bathroom with loose bloody stool. Trips were impossible for me to take. Had a colonoscopy done and about 3 weeks later my first rectovaginal fistula made its presence. Went to see a surgeon and made plans for surgery both unknowing exactly what would be found. By the time my surgery approached, I was completely incontinent of my bowels. Not only could I not control what was coming out through my anus but it was also coming out of my vagina. I made the decision to have an ileostomy in order to have a real quality of life. I have had 2 fistula repairs, sphincter repair, partial colectomy, and an ileostomy. I am going in Tuesday for another colonoscopy, exam, and another fistula repair under general anesthesia. It wasn’t an easy decision, but it has been the best decision for me. And after Tuesday, I can finally be placed on medication for the Crohn’s and it can finally go into remission.

Please don't be so down or negative about your fecal incontinence. Speak up to your doctor about all of the options. Because as long as I continue to get fistulas, this ileostomy stays! I don't like it, but it gives me a quality of life.

– Name withheld by request

Fecal Incontinence... I can so relate to many of you out there! It helps to read others’ stories, how they have dealt with problems of incontinence and the feelings they have experienced. I too have been to gastroenterologists many times, tried various medications, had various tests, with little positive results. It is discouraging and depressing, embarrassing and frustrating.

I have had problems with urgency with my bowels off and on for as long as I can remember and I am now in my 50's. I remember riding the school bus in fear. Bad weather can set it off (because of my fear of it), or knowing I am in a situation where I am unable to go to the bathroom can set it off, fear of driving with others in a car, realizing my thankfulness for the summer and the corn fields, and dreading the winter coming, being so very exposed out on the roads with the snow, icy conditions in the Midwest, and no shelter or place to hide if the need arises, and it will when I least expect it! And when I most expect it also because I am so nervous about when it might happen that I can bring it on myself. Other days it may be caused by eating something and I will have to literally run and pray I make it. I have eaten the same thing another time and it never phased me! I have my days that I can laugh at myself or a situation I was in, and I have my days I will cry because of a situation I was in!! I have my friends or family I can talk to, cry with, laugh with; and I know the ones I cannot! I have to continually remind myself, that this life is very short, and there are many blessings I have received that I can not thank God enough for. If this is the worst burden He has handed me in this life to deal with (and some days it honestly does feel horrible and hopeless, to be honest), I know He will give me tomorrow and it may be a better day. I try to be as grateful as possible for my life because there is so much pain and suffering in this world that I do not have to experience that it is even beyond my comprehension.

If I need to get by in this life a little easier by wearing incontinence pads or pants, I will or by avoiding certain situations, I will try my best also. All I can do is to keep trying to live my life to the fullest extent possible. Enjoy the gifts I have been given, and deal with the disability and challenges the best I can. And yes, it helps to know that I am not alone! Thank you!

– Name withheld by request

Thank you everyone who has shared their stories - it has so cheered me up. I have chronic fatigue syndrome as well as IBS and incontinence.

It's only been about 6 months since I acknowledged the functional incontinence to another person - it was at a therapist’s office, and a friend had taken me - so it was a dreadful moment. It's been a long period of adjusting and accepting the condition. Finding ways to cope with the practicalities, and sorting out a new mental image of the person I really am.

We should see ourselves as 'heroic' for dealing with this problem - we've battled to overcome a mortifying enemy. I’m 44 years old and I've struggled to adopt a new vision of myself. At first when this happens in public, I just wanted to die, and my self image, an image of a youthful person, was crushed. I still coax myself to try and separate the essential 'me' from the body. So then I can say, my bowels have a problem, but I am more than just this physical problem.

This week I had a breakthrough. I don't leave the house without precautions, but because I’m a learner at this, there have been some embarrassing public episodes. This week I discovered that ski and snow boarding trousers (pants) are pretty good for hiding incontinent episodes. They look trendy, sporty and youthful. And they are waterproof!! This has given me confidence.

At the moment I’m ashamed to talk to anyone who doesn't know about the problem personally, but I’m going to tell anyone on this marvelous site - I have functional incontinence, and I’m going to live as best I can with it.

God bless and good luck to you all.

– Lisajane

At age 16 I was diagnosed with Colitis. The colitis did not really affect me unless I ate onions or spicy/fried food. My problems really started in October 2005 after Hurricane Katrina. I lived in the New Orleans area and my home, work and children’s schools were all affected. I was living in a hotel room with 3 teenagers, 2 dogs, 1 bird and my husband for 2 months. I was working on getting a new location for the company I worked for and trying to fix my home and was getting very little sleep. I started to notice that even after just eating a sandwich I would have to run to the bathroom. From October 2005 until January 2006 I lost 40 pounds and was put in the hospital for extreme dehydration. Since that time I have not been able to control my bowels. I was then diagnosed with a rare neurovascular disease (erythromelalgia) in April 2008 and my bowel problem just kept getting worse. I am now at a point that within 5 minutes of eating I get a searing pain in my stomach area. I try to eat small amounts of food several times a day but the pain, nausea and diarrhea just are not worth it anymore. I feel so much better when I do not eat at all. I find most doctors to be very uninterested in patients that they cannot fix quickly. I am starting to loose hope that the doctors will find something to help me. I have been living this hell for 4 years now and do not know how much more I can take.

– Leslie

I am so thankful for this website and for everyone who's shared their stories. Even though we don't all have exactly the same symptoms, I can't believe how similarly all of us are living with fecal incontinence. It's definitely good to know that we are not alone out there because it sure does feel like that on a day-to-day basis.

I'm 35 years old and suffered an incomplete spinal cord injury (burst my L1 vertebrate in a fall) at the age of 31. My life as I knew it ended that very moment. I had built a life around living in the outdoors and working in ‘the field’ as an ecologist and an environmental educator.

Although I feel very fortunate for having regained the ability to walk again...I have been left with fecal incontinence and a host of digestive problems. I have constant diarrhea, seemingly due to the shock of the injury.

I tried the sacral stimulator, two different times, with no success. So like most everyone else who has shared their story here, I have become a recluse. I have many friends and family members who have tried standing by my side... but the few accidents I had during the times I got ‘courageous’ and left the house have taught me to be okay with living a very limited life... at least until medical advancements help.

I don't have a bowel program because I have diarrhea...so I use lots of loperamide throughout the day and just try to ‘read’ my body on the days that I want to leave the house. Aside from all of the limitations of being tied to a bathroom and not wanting to ever take another vacation far away from the comfort of my own home, I think one of the toughest parts of fecal incontinence is the inability to make plans ahead of time. Whether with friends or for work. I have had to flake on many occasions, and I've lost my spark for doing ‘fun’ things. I live minute to minute, and enjoy my time with my dog and my lovely boyfriend who has somehow stood by me during this whole thing (we started dating a little over a year ago) even though we have only been intimate a few times. I peed the first time, which taught me to always empty my bladder beforehand (I also have urinary retention).

But overall, I'm very depressed about my situation. There's no pill big enough to allay the feeling of pooping while you're out and about. My last episode was during a hike (my favorite activity) and I was depressed for a whole 2 days afterwards.

Thanks for sharing everybody!

– Sarah

I am 57 years old and have been diagnosed with Myotonic Muscular Dystrophy. As a result, I have had a problem with incontinence since I was 17 years old. Probiotics have helped considerably although I still have problems when I know I have to attend meetings or be in situations when I am not free to get up and use the restroom.

I carry a large purse containing charcoal capsules (they relieve painful gas), a change of underwear, baby wipes, and room deodorizer.

The incontinence problem used to bother me more when I was young. I guess now that I am older, I care less about what people think of me. My family loves me in spite of my problem and they are the most important to me.

The problem is embarrassing to be sure, but usually not fatal. And I don't think other people give it too much thought when I have an accident. Maybe they are just glad it isn't them. I try to remind myself that it could always be worse and I count my blessings.

– Name withheld by request

I am 31 years old and had my first child 1 1/2 years ago. The doctor performed an episiotomy during my delivery. I discovered a few weeks later that my stool was leaking the whole day after I would go to the bathroom. I didn't understand what was happening and I would just keep wiping through out the whole day so that it wouldn't get too messy. The leaking would be a apparent on the toilet paper, but never on my actual underwear. So I asked the gynecologist, and he then sent me to a surgeon.

The surgeon recommended that I have my sphincter muscle repaired. I went in and had this painful surgery. The recovery was so uncomfortable. Anyhow, I was just looking forward to my problem being fixed. A few weeks later, I STILL have the same problem, now it's just really getting frustrating, because I feel like if I don't do the douche water thing every time I go to the bathroom for #2, I will keep on leaking stool ALL day long, and just feel dirty, self-conscious that maybe I will smell dirty. The problem is that when I leak I don't feel a thing. I start to notice something is weird when I get a little itchy, or smooshy down there. Pretty gross, but I've been dealing with this for while now, and no resolution other than this very annoying douching.

If I am outside, the issue becomes a bigger problem, because while I can hold my #2 initially, the problem for me lies after I actually go to the bathroom to do #2. If I am outside I will hold it as long as I can, and try to make it to my house to then go #2. I am scared to go on vacation because it's not like I could just douche my #2 in a public bathroom, I gotta just deal with the leaking and go to the bathroom to wipe at least 2-3 times each hour until I can douche at home. I work from home and so I don't ever leave my house. When I start thinking that maybe one day I wont be so fortunate as to work from home, I cringe, because I know I will have an even harder time with this issue.

I am sad that I have to go through this. The doctor sent me to do a rectal sonogram, which was very embarrassing, cause you have to sit there and do #2 in front of like 5 physicians. Results showed that I've got a pocket where the stool collects and just empties out on its own gradually with my movements. This means more surgery for me, a more invasive one. Now I am totally freaking out, because I have a baby to take care of, and also, I wanted to begin planning for my next child, and everything just seems like it is revolving around my #2. It has taken control of my life, and no matter what I do, I feel sad, and dirty. Oh, and sex, sooo embarrassing, you just never know if there is leakage going on. I gotta take a good bath, and douch my #2, so that I can minimize embarrassing moments. This is probably the hardest thing, because as a woman you want to always feel clean and confident about yourself, and this issue really truly takes a toll on every aspect of your life. I want it to end sooo bad. So until then, my life will continue with trying to make the best of this issue while trying to research what can finally and actually help me. This is my life ladies and gentlemen, and all because the episiotomy that was performed during my labor. I hope to one day going back to normal.

– Susan

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

– Name withheld by request

I was born premature with multiple medical problems, mostly intestinal and urinary. I was also born without a rectum. The doctors were able to rearrange a lot of the internal things and I had to get an ileal conduit (urinary ostomy). These surgeries have left me with short bowel syndrome and I also have no sphincter muscles to speak of. I now have problems with chronic diarrhea and have trouble at work because I need to take time off every so often because I can not get out of the bathroom.

I my doctors have been great but they are at a loss as well. I don't know where to turn anymore but I try to keep on going in life. I know I am not alone but sometimes I feel like no one understands.

Thanks for this website, I cried when I read these stories. I don't feel as alone anymore.

– Nancy

I was diagnosed with rectal cancer at age 47. It's been almost nine years since finding that tumor which completely changed my life. I had radiation, chemo and surgery where I received a temporary colostomy. After that was reversed, I was left with no control of my bowels. I know I should be happy that I'm beating the cancer but there are times I wish I didn't.

For the first year and a half I was almost a virtual shut-in, only venturing out of the house when I absolutely had to. Then there was the constant fear of having an accident. I was going to the bathroom some thirty times a day and I had to get to one fast. I tried exercises, diet, medications and went for a test that said I still had muscle tone. Nothing helped though and finally I gave up trying to be normal. I found a bowel program on a web site which worked on eliminating your bowels once a day. The problem was it still took about 3 hours to get things moving and resulted in explosive diarrhea.

After awhile I was able to return to work and rarely had a problem during the day. Of course I had to awaken at 3:30am to be at work at 7. This worked for about four years and little by little became less effective. I found my self having to finish going by using enemas, which I now rely on. The resulting pain and cramps are almost unbearable at times and the movements are still explosive. The procedure does take less time though but I am still confined to the bathroom for about an hour and a half. The good part is I get to live a normal life the rest of the day. The bad part is I am left feeling exhausted and I still have trouble accepting my condition as I long to be normal again.

I hope this might be helpful to some of you.

– Dennis

Understanding

Living with incontinence means living with uncertainty. It is unpredictable, potentially disabling, and invisible to others. Support from others is important, but even those closest to you will need help to understand your needs.
I was in a motorcycle accident 20 yrs ago. I have had 'accidents' ever since. I also have fructose malabsorption issues. Everything I eat gives me the runs and I have no functional control over it. I have had accidents everywhere. I'm always prepared, but always devastated. More surgery is in my future, but it could make things better or worse, they don't know. I was told today that fecal incontinence and malabsorption are NOT permanent disabilities. This was from a receptionist in a rectal surgeons' office. In order to go out in public or to go to work, I can't eat anything until I get home. It is very difficult and depressing way to live. Any help in dealing with this would be great.

– BA

I just read all the stories on your web site and I said, thank God for it. I can relate to nearly every story. I am a 45 year old mother of 3, and have had incontinence for over 20 years now. It controls me. I so wish it didn’t... but it does. I have suffered from depression over this. I used to teach Sunday school and sing in church, but I don’t even go there very much any more – after singing one day and having an accident while behind the pulpit. I very ashamedly walked home and while in the shower begged God for a reason why. I don’t expect an answer, however, I do believe that everything happens for a reason and we have to try to live life to its fullest in whatever capacity that is.

I stay home a lot; I hurt a lot. For me what hurts most is not the disorder, its people. They don’t understand at all. Even my church family doesn’t seem to understand. At the end of each day, to get through another, I rely on my faith and the belief that we are created in love and for a reason. That is what gets me through. I am thankful for the blessings of my family and my husband. I was glad to see that a lot of people here seem to have someone. There are many people in this world who don’t have someone to lean on. I would much rather go through this and know that I am loved beyond a shadow of a doubt than go through life alone. I hope this has helped someone. It is therapy to be able to speak on the subject.

I considered this website a godsend. If by chance you read this and think you don’t have someone, you do. We are all here for each other. Thank you very much.

– Tammye

Isolation

Most people feel alone with incontinence. But studies show that as many as 1 in 15 people suffer from the condition. It’s important to talk about it.
I was diagnosed with colorectal cancer in 2007, at age 47years. I am a widow with children. I've had surgery, chemo and radiotherapy, and had a loop ileostomy until 5 weeks ago.

Since the reversal I have been incontinent – I don’t know how long this will last. I go about 40 times a day, sometimes not knowing until I see or smell it.During the day I mostly get to the toilet, but at night I wake to having messed myself. If I didn't have to go out I wouldn't, but I have to shop and look after my children get them to school, etc. I'm finding it very hard on my own, and I’m without family or friends as I only moved here 6 months before I got ill. I'm grateful I'm alive and feel guilty sometimes for complaining, but I just need a moan now and again. I would love if someone would give me a time frame on this. I thank you for your stories as I don’t feel so alone anymore. God bless you all.

– Monica

I was born with Spina Bifida. Not a truly severe version, since I can walk, and I've avoided some of the side effects, such as hydroencephalitis. However, I do have to deal with both urinary and fecal incontinence. I have some control over my bladder, but almost no control over my bowels.

Having this condition since birth has been both a blessing and a curse. On the one hand, I haven't known anything else, so I haven't had to adapt to a sudden or even gradual change. On the other hand, I've felt like a social outcast for most of my life. Maybe it's made me a stronger person, but it's been hell.

I grew up dealing with kids teasing me (and they can be horribly cruel) about my problems. I avoided dating when I was in high school and college, at first because of my social standing with the other kids, and then because it became a habit. I didn't have a steady girlfriend until I was 33, and at 40, I'm still single.

I've lost jobs because I had to miss work, come in late, or go home because I had an accident. Stomach flu and the occasional cooking mistake just made things worse.

Despite all these problems, I've tried to adapt. I use large liners in my underwear, and try to stay away from foods that I know cause problems. I try to stay as clean as I can, when possible. Some days, I still have to stay home, but I try not to let it get to me. I've had my share of sitting in the bathroom crying, though. Sometimes you just have to do that.

After all is said and done, all I can do is press forward, work around what I can, and endure what I can't.

– Justin

I am 30 years old and dealing with fecal incontinence. I stumbled upon this site today after another failed attempt getting to a bathroom. This time it happened in my car 15 minutes from home. If I would have had more than a second to realize what was about to happen I would have pulled over and ran for the ditch, but there was no time. My problems were caused by childbirth; I ended up with a fourth degree tear that now haunts me. Two years later I started having smears and problems with defecation. I was traumatized by visions of having an accident during sexual intercourse, so I lost interest and pushed my boyfriend away. Then I decided to have an anal sphincter repair. I was so excited and hopeful. My stitches came apart in three days and it took me almost six months to heal.

I am very depressed. I try to keep positive, but now my career is in jeopardy. I feel gross, I have put on weight and all I want to do is cry when I have days like these. I have supportive family and friends, but I still feel alone. I am scheduled to participate in a pelvic floor biofeedback program. I hope it helps...

– Jess

I have suffered from frequent bowel incontinence for about 6 months now, and I cannot yet fathom living the rest of my life with this condition!

I've never actually known anyone who wasn't in advanced age that suffered with incontinence, or at least was willing to reveal the condition. At 51, I have only revealed my condition to my closest family members, my closest friend, and my physicians.

One of my greatest frustrations is that my physicians respond to the condition with nonchalance. I doubt that any of them are sufferers, and so they have no idea how this condition changes every aspect of your life. I have a new gastroenterologist who is by far the brightest, and seemingly most concerned, of all the physicians I've seen since getting ill, but I think even he would get more excited if I told him I'd bought a new car than when I tell him about my fecal incontinence.

Reading other stories on this website has helped me to dismiss the notion that I'm the only non-geriatric woman in the world that suffers from this awful condition. It has also made me very grateful to have family members and friends that I can talk to about it.

– Name withheld by request

I have been reading some of the bowel incontinence stories on your website and I feel a mixture of empathy, sympathy and hopelessness. So many of the comments are my own. After an entire lifetime of constipation causing multiple surgeries to repair the related damages, I was finally diagnosed two years ago, at age 54, with a birth defect in my spinal cord that leaves the lower part of my colon without muscle tone, or nerve function. A pelvic floor disorder complicates matters. The final surgery to repair a third anal fissure, I have total bowel incontinence. I understand the devastation of losing control in a public place, the fear of losing control and not even knowing it until the odor tells me, the feeling of just wanting to 'live in the shower' to wash it all away. I am pursuing some medical procedures, but the doctors offer little hope that it will be a permanent solution. I wonder if anyone out there has resorted to a colostomy to control this unmentionable, life-changing condition? To me, this almost seems preferable to never again having the confidence to walk freely and confidently.

– Holly

I am 77 years old and have suffered with fecal incontinence and chronic diarrhea for 40 years. You can imagine how little was known 40 years ago. Doctors would tell me I had a ‘nervous stomach’ and nothing could be done about that.

I told no one because I was too embarrassed and thought I was the only one in the world with this terrible problem. Later there would be articles in magazines that would suggest carrying a bag in the car and using it if necessary. You can see that whoever wrote that never had an episode in a car!

I take OTC anti-diarrhea medicine every day and hope for the best. I have good days and bad days and have learned to live with this disorder. Today at least everyone is able to find others on the Internet who suffer with the same problems. . . . A step in the right direction.

– Name withheld by request

I have been suffering with bowel incontinence for at least 15 years. I have gone from doctor to doctor with only sporadic relief of my symptoms. I have fewer good days, and many more bad days now. I can no longer work, travel, exercise, sleep or rarely leave my home. I have a family physician and two gastroenterologists currently. I hope to help others by letting you know you are not alone. I feel like I am the only person in the world who struggles this way.

– Name withheld by request

Changes

The pelvic floor is a group of muscles that supports organs, which include the birth canal, the bladder, and the rectum. The pelvic floor goes through many changes during pregnancy and delivery. Sometimes these changes can affect the way the nerves and muscles in the pelvic floor work. This may cause problems with continence. Talking about these problems is the first step in finding help.

I am a 37 year old mother of two little children and used to work in a senior position. Following complications during the birth of our daughter, I am suffering from urine & bowel incontinence.

In the beginning I did not dare leave my house, not even go to the supermarket. Over the past two years, with help of therapy and pelvic floor exercises, it has gotten much better. Most days I only wear pads, not ‘adult diapers.’

Recently I went on a cross-Atlantic flight and attended a conference. Luckily it went fine, and I felt very proud of myself, though I was exhausted from fear and tension.

On bad days, I stand under the shower, cleaning myself up, overwhelmed by despair. I feel guilty; I should be happy and relieved that I have two wonderful children, a great family and dear friends. There are many who are suffering much worse. Still I cry.

My therapist says that it gets easier the more I talk about it. So I've been writing about it on my personal web site and blog. Under my real name, because it is about time to stand up and drag this problem out of the shadows. I hope this will not spoil my chances of employment in the future, assuming I can eventually muster the confidence and courage to resume my career.

– Antje

Uncertainty

For the person who experiences incontinence, uncertainty is a major issue. Regardless of whether incidents occur once a day or once a month, the burden of dread remains constant.

I have MS and had my gallbladder removed several years ago. No way to know which one is causing the problem but the problem is most definitely there. I have pretty serious fecal incontinence. I have more accidents than I can count now. This last accident had the potential to be the most embarrassing. I was at a playground with my 5 year old and a girlfriend and her kids. I felt the feeling and started walking as quickly as I could to the bathroom. Half way there, I couldn't hold it in any longer and rushed behind a bush. I was able to get my shorts and underwear down before having a full blown BM but some of 'it' did get onto my underwear and shorts. I removed my underwear and pulled my shorts back up, walked to the bathroom and had to clean myself up as well as the shorts. My girlfriend didn't seem to notice my pitstop behind a bush and I can only hope no one else did either. I have been lucky in that no one, except my husband, has been a witness to any of these accidents but having to go in a public park behind a bush was a true low point.

– Name withheld by request


Hi. I would like to share my embarrassing story, I am going on my 10th month of diarrhea. In August of 2008 I was involved in a 3 car accident where I was in the middle. Exactly 4 days later I started having frequent stools, then it turned to diarrhea. I continued my job but made sure there was a bathroom nearby, I had a colonoscopy, ultra sound of stomach, pelvis, all came back normal. I tried medicine, massage therapy, more medicine, finally they took out my gallbladder, which was the worst thing I could have done because it is now worse. I had to take a leave of absence in Jan of 2009, then finally I just had to quit my job because of constantly going to the bathroom. I live in the country and when taking my son to school it is a race to town because of the fear of no bathroom around. I tried taking a probiotic for 4 weeks but it did nothing so I quit because of the cost. I can not work. The doctors ruled out celiac disease, gluten allergy, dairy products, etc. I am at a loss, I would love to start enjoying life but how do you when you constantly worry about where is the bathroom?

– Name withheld by request


I had a colostomy done some 23 years ago. I was 5 years old then, and had spina bifida leading to neurogenic bladder. At a young age I was told that it was the best for me to accept the truth as I aged. But now I’m 28, wanting a normal life, and a normal sexual life, for that matter. I remained a virgin because of my incontinence. Since the operation, I suffered from chronic constipation that my doctor called ‘normal’ for my condition. As I became aware of my sexuality and began to experiment I realized I do have this problem when getting aroused. I can’t control it as much as I want to. I was so afraid to have sex and that my partner would laugh at me. Finding this site made me realize I’m not alone. And it made me cry my heart out for everyone else too. I understand the feeling. Just remember, you are not alone.

– Name withheld by request


I have suffered with IBS for a number of years prior to being diagnosed. The most distressing thing for me is incontinence and the ensuing depression which this evokes. I have given up well paid jobs because of it and have suffered a severe loss of social life.

It seems that my whole life is dominated by my bowel to the extent that some days I am afraid to leave the house. I have encountered severe incontinence where my bowel has evacuated itself in the street, in my car and once in a store when we were on holiday in America. I get none or very little warning. There is absolutely no control over it, I can only try to reach a toilet, which isn't always successful.

The other type of incontinence is where my bowel releases smaller amounts of stool frequently throughout the day without my realizing it is happening. This again results in me being afraid to leave the house and I get very down at constantly having to clean myself, wash my underwear and shower only for it to happen again a short time later. I am becoming more and more desperate and am at my wits end with it all.

– Name withheld by request


I have been experiencing fecal incontinence sporadically for the last year. At first, I did not think much about it and attributed it to a new laxative, change in diet, stress, etc. But it is getting worse and I find the embarrassment is becoming more of an issue, especially when my husband wants to be intimate. I am 55 years old, a mother of two, grandmother of five, in excellent health, and work a full-time job.

My incontinence is sporadic but seems to be occurring more frequently. I have an appointment with a gastroenterologist for a colonoscopy and am hoping for a non-surgical remedy for this problem. Reading the various stories is both informative and encouraging.

– Yvonne


I am a nurse involved in patient education. For the last 4 years I've been struggling with increasing problems with first control of gas, then with progressive leakage of stool. I was originally told that it was a part of becoming older (I just turned 60) and a probable old birth injury. I was diagnosed with limited systemic scleroderma at age 58 and have many gastrointestinal symptoms. I was finally referred to a colorectal surgeon who did many diagnostic tests to determine a muscle defect in my anal sphincter. I did 4 months of advanced Keogle exercises to prepare for the surgery, which I had 5 weeks ago. Unfortunately, my incontinence is actually worse since the surgery.

I am still healing, so I have hope it will improve, but in consideration of returning to work, I have to consider how I will be able to function in a social setting with continued incontinence. Do I request a position where I can sit in an office and do computer or phone work? Can I do phone or computer work from home? Does the American Disabilities Act apply? I am considering a diverting colostomy, but having used all my available time off, I will have to work a year or so to build my sick-leave back up. I find no consistent effect from diet change, activity, Yoga, Imodium, stress management, or antibiotics. From my research, I will discuss the use of some form of anti-inflammatory, anti-spasmodic and anti-depressants with my surgeon, gastroenterologist, rheumatologist and internal medicine physician. I am searching for suggestions I can utilize to get this problem under control.

– Name withheld by request

I no longer feel alone. I have read your stories and heartfelt good wishes go out to all of you from me.

Bowel incontinence is a very debilitating condition, as we all know. I have been taking OTC anti-diarrheal tablets for years when I need to be as reassured as is possible that I will not need to use a loo. Car journeys have been so difficult – I have looked at other people who sit in traffic jams daily and wonder what it would be like to not have to worry about incontinence.

The fear is impossible for non-sufferers to understand. Thank you for sharing your stories on here.

– Name withheld by request

Panic attacks – that is part of my life now. I have panic attacks when I am not within steps of a bathroom. I wish I could wear thin pads. I wear full diapers and I am not a small woman so you can imagine how much bulkier they make me look. I am 45 years old and have had this problem for 20 years, progressively getting worse over time and with babies. I am going to have my first colonoscopy in a few weeks and perhaps some anal sphincter repair surgery. If this does not work you can be sure I will get a colostomy. I am too young to become a shut-in. I can't explain this to anyone; I have to leave them wondering what is wrong with me or lie about my condition. My family (mother and sisters) don't want to hear about it, they just want to give me a hard time when I tell them I can't travel or spend a day shopping with them. I can't car pool either. I get panic attacks in grocery stores, Walmart, at the gas station, any time I have to wait in line for any length of time. Going without eating causes other problems.

My husband is great and loves me and so do my children. I have told a tiny handful of friends but now that I am facing surgery I will have to tell more. If you ask me, this is worse than many other common diseases where people get understanding and tolerance from others. How sad it is to feel so sorry for myself. I am not like this all the time. Just in one of those moods I guess. Thanks for listening and my prayers go out to all who are suffering with this.

– Name withheld by request

You feel so alone. You don't dare tell most people. they may avoid you or think you are "sick." They may say, "Go get help." You have. No one understands unless they have suffered with this.

Your life revolves around this. It changes who you are. The day begins with preparation to deal with it and then it stays in your consciousness; the burden is exhausting.

Alone, sometimes. you just give in and let it run its course. You try to ignore it and go on with your life. You can for awhile, until it gets worse and then you want to scream – "I hate this!"

Sometimes you feel you have beaten it. Life returns to "normal." Most of the time you just try to control it, until the painful spasms in muscles you've squeezed tight too often make your toes and fingers curl.

The focus of your life becomes trying not to lose bowel control. You know the devastation of losing control, the personal loss of dignity, of your self-image, of being a desirable human being, of sexuality. The shame feels unbearable. You try to forget that it happened. Then it happens again.

It can happen with no warning, without giving you a chance to even try to control it. You don't feel it or know it is there until you see it on your clothes. You are shocked, overwhelmed, and then numb.

You use pads. You don't wear white or light colored clothes. Your friends suggest alternative treatments; they all "worked for someone" that they know. You change your diet. You feel better for awhile and then worse. You stop it all.

You go and see another specialist, and endure distressing tests. You struggle against the indignity of it all. You walk through a door that says, "Anal Incontinence Department" announcing to the world your uttermost private problem.

You wonder how someone else deals with this when they don't have the family or friends that you do. You begin to think about yourself aging, and become anxious about what life will be like then, if it is like this now. You feel old down there, very old.

Then, another day dawns and you prepare to begin again.

– Name withheld by request

Loss of function

Incontinence can be caused by loss of function in nerves and/or muscles. Working with a physician or therapist to determine the cause is an important step in improving function.
I have had this horrible problem for over 5 years. I have a ‘nervous’ stomach, stress, and watch what I eat. Now I've gotten to the point I don't want to eat because no matter what I eat I have diarrhea. I have had to throw clothes away and now I wear the pads. I just had another colonoscopy for the umpteenth time and still they found nothing. I wasn’t surprised. Antidiarrheal drugs don't seem to work anymore. Maybe a colostomy would be better? I am just so tired of life like this. I don't have a washing machine as I live in a complex where the laundry room is a quite a walk from my apartment. Thanks for listening.

– Shirley

In the fall of 2003 I was diagnosed with colon cancer. Surgery, chemo and radiation therapy hopefully have put that behind me. However after having surgery it seems that I have lost function in my sphincter muscles or nerves. I now have to go to the bathroom many times a day and am not always able to make it. Indeed, some times I don’t even know that I have already gone until I actually get to the bathroom. Some days I cannot leave the house. I do not like to stay overnight at some one else's house because of this problem. I have tried doing exercises to build up my muscles but that does not seem to be successful. And I have not found any particular food that makes matters better or worse. I have a constant feeling of having a full rectum and even have to get up in the night to eliminate. I am grateful to be alive and thankful every day that my cancer has not returned but I surely would like to be able to live a normal life as far as my bowels are concerned.

– Name withheld by request

Gratitude

"At times our own light goes out and is rekindled by a spark from another person." – Albert Schweitzer
I no longer feel alone. I have read your stories and heartfelt good wishes go out to all of you from me.

Bowel incontinence is a very debilitating condition, as we all know. I have been taking OTC anti-diarrhea tablets for years when I need to be as reassured as is possible that I will not need to use a loo. Car journeys have been so difficult - I have looked at other people who sit in traffic jams day daily and wonder what it would be like to be normal and not have to worry about incontinence.

The fear is impossible for non-sufferers to understand – thank you for sharing your stories on here.

– Name withheld by request


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