Courageous Stories
Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer. Share your story.
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.
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
April 12, 2008
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 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
January 7, 2008
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 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
February 16, 2008
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
October 2, 2007
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
September 17, 2007
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
May 22, 2007
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
June 25, 2007
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 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
April 11, 2008
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
March 15, 2008
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
January 11, 2008
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
October 23, 2007
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
Archives
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
October 8, 2007
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
May 7, 2007
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
January 11, 2008