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Personal Stories

Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer.

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

College life

Many college-age students have written us about how disruptive to college life it is to suffer from a functional GI disorder. But some people find clever ways to manage their disorder and still enjoy and excel at school. If you are a college student with a functional GI disorder, we'd love to hear from you. Tell us what special strategies or tips have helped you:

  • How do you talk to dorm or roommates about your bathroom needs?

  • How do you talk to professors when your disorder makes you miss a class or test?

  • What's the best way to organize your morning, to help you get to class on time?

  • What tricks allow you to juggle classes on different parts of campus?

  • How can you participate in social activities while still avoiding triggers that can cause a flare-up?

Share your tips with us now!

I am 21 and have had chronic constipation since I was little. I remember being surprised to find out that people could have bowel movements in public bathrooms or at friends' houses. When I was 18 I developed a fissure and polyp which had to be taken care of surgically. After the surgery, I was able to keep problems at bay with lots of water, fibrous food, and a comfortable living situation. No one but my family and boyfriend from that time know about it.

Now that I'm going to school I want to try out different living situations. Right now I live alone and have a movement about once a day, sometimes less. I am nervous that if I move in with a few other people I will throw off all the progress I have made since surgery and not be able to even relieve myself in my own home! It's going to take a lot of lifestyle changes in my exercise and diet intake in order for me to feel comfortable enough with my bowel schedule. But at the same time, I want to meet new people and pay less for rent. Hopefully moving in with these kids won't cost me another surgery and lots of embarrassment.

I am happy to see that I am not alone in this, and agree that the medical field eventually needs to expand research.

– Name withheld by request

This in response to May 2011 21 year old college student. If you're worried about losing the progress you have made after surgery try this approach. Get up every morning before your roommates about 30-45 minutes so that you can sit on the toilet to have a bowel movement. This way you will have the time you need to be relaxed and not feel rushed. This will get your bowels in a daily routine schedule for having a bowel movement and you won't have constipation problems any more. I use slow deep breathing exercises to help relax my body and mind and actually helps in aiding you have a bowel movement without pain from excessive straining and forcing stool out. I do this every day to keep my chronic constipation at bay which I have had since I was a little kid and I am now 50. I takes more time, patience, and daily commitment but the pay off is that you’re not in pain because you haven't been able to go in 3 days or more. I can't deviate at all from this schedule at all or I pay for it big time the next day. I take fiber in the am and pm to help keep my stools soft and help keep me regular. I drink lots of water and eat a high fiber diet which helps keep stool moving down the large intestinal tract faster so it doesn't get stuck and hard and dried out .I sure this will help you like it has for me.

I am happy to see that I am not alone in this, and agree that the medical field eventually needs to expand research.

– Name withheld by request

The need for options

When a drug or treatment that was helping to relieve symptoms stops working or is no longer available, life’s stability can be broken. Too few effective medicines are available to people with chronic constipation who are searching for a way to manage their symptoms. More needs to be done to develop and make available effective therapies. 

I have had severe constipation and IBS for over thirty years. I have seen gastroenterologists and had barium swallow and enema. I have a redundant colon and have been taking laxatives daily for all these years. I take stimulant laxatives twice a day along with a psyllium laxative at night. I drink 8 glasses of water daily and eat a high fiber diet. I am a biker and was a runner. I do not smoke or drink. I am now finding it more and more difficult to have a bowel movement. I am taking enemas 2–3 times a week. Maybe I might have one good day a month. It seems so profoundly depressing that I have considered bowel surgery. I have tried probiotics, juicing, even extremely expensive pills. I have belly pain and really have lost weight because I do not feel like eating. I still try to enjoy life by being with my church family and more than anything I pray to God for strength and healing. When I have a good day, I cry and thank God for it.

I am a retired nurse and I know that this particular disease has fallen through the cracks. Not one doctor I’ve seen has ever considered this a real problem. It is absolutely devastating and my prayers are with you all. As I nurse I have surely seen death and many friends and family suffer with cancer, stroke, heart attack, and more. Well I feel guilty because I am complaining about this problem. I wish one doctor would dedicate their education to helping people who suffer from chronic constipation. I believe there is a cure waiting for us. However, it is not a top priority disease. I have nightmares of living long enough to end up in a nursing home wondering who will care about my pain. It is debilitating, depressing, agonizing, and so misdiagnosed. Taking a hot water enema is the only safe relief, yet it will cause dependency just as stimulants, or any other laxative. People actually find this to be amusing and think we are obsessed with our bowel movements. I can assure you that if you stop having them, you too will become obsessed. I will simply pray for a better day and again thank God that I am here. Please don't give up hope. Someone else's situation is always worse. I pray for a medical break through that will give us the quality of life that welcomes in the dawn. I still love life even when it seems life doesn't love me, He loves me...

– Kathleen

I developed my IBS symptoms after a stomach infection/virus that I got over 23 years ago. While the symptoms started out as diarrhea, they now have evolved into constipation with pelvic floor dysfunction, functional bloating and gas. Since these symptoms are daily, not episodic, what this means for me is that I never know what the day or night will bring. The bloating and gas keep me up at night. The movement of my bowels in the morning cause my day to be affected in a variety of ways. Besides taking a very long time in the morning (and I usually try to avoid morning appointments), I again never know how much discomfort I will have. It is hard to plan things, and I have avoided many events and social situations that I otherwise would have enjoyed. I never eat before I have to sit through anything, as just the act of eating usually causes a reaction in my intestines. It is just the degree of discomfort that is an unknown.

I have tried most medications that were/are out there. Nothing has helped. Through the years I have tried cognitive behavioral therapy, hypnosis, massage therapy, different diets, fiber of all kinds, and other therapies too numerous to mention. Although some therapies were pleasant (some not), none made much difference for me. I have sought out research doctors in places such as Pittsburgh, Kansas City, Baltimore and North Carolina. I rejected the large doses of antidepressants that were suggested. These drugs were supposed to send signals to my gut and help me, but I couldn't envision my life on them, and I was very averse to taking them. Probiotics made my gas worse. What I have come to realize is that that there is very little out there for my condition. Stress around me (unavoidable in life) makes my condition worse or at least seem worse.

I have started to travel again recently, and have found it (when done on my own terms) to be very enjoyable. I have also found that for the most part, my friends do not really understand my situation, as I don't think most people can picture having something so chronic in their intestines. They think (hope) I will “feel better” as if it were a common cold. There is nothing I can do about that. I try the best I can to do what I can and enjoy what I can. Many times I have to force myself to go out or do something. Sometimes it works out, sometimes it does not. I am lucky to have a wonderful, supportive husband. Since he's the one who lives with me, that's important. I prefer to eat dinner early, and many times I skip meals altogether. But this is the way things are, and I really doubt that anything will be found to help me in my lifetime. I am trying to enjoy my life as much as I can under the circumstances. I really wish there was a support group near me, but I could never find one. Having a disorder like this makes one really feel alone. Maintaining my sense of humor helps a lot.

– Name withheld by request
 

Both my sister and I have suffered from severe constipation our entire lives. I have also been treated for depression on and off. Turns out after years of treatment for depression, I was misdiagnosed and am now on proper medications.

I had chronic and severe constipation, that causing agony, painful cramps and bowel movements (when I could have them), diarrhea pushing around the hard stools, gas, and bloating. Yes, I have been rushed to the hospital myself because of the symptoms associated with constipation. However, one of the medications I was put on was an SSRI antidepressant which also has anti-anxiety properties. I had no idea it had any anti-anxiety properties nor had I ever considered myself an anxious person. However, I noticed after taking this drug for a short period of time that my constant problems nearly resolved. It did not disappear totally, but became infrequent.

I am not a fan of benzodiazepine-type anti-anxiety medications. But this SSRI was a lifesaver for me. I wish more physicians knew that some SSRIs can relieve the symptoms of severe constipation.

By the way, this also worked for my sister, also plagued with lifelong problems. I am 59 and she is in her mid 40's. We have had this problem since early childhood.

– Mary K.
 

I am a 68 year old single mother living with my daughter and grandchildren. I am so pleased to have found your website. My earliest memory of my disorder is from when I was six or seven years old. My mother and father were out of town when I began experiencing intense pain in my abdominal area. The sitter panicked and called my parents who drove 500 miles to get home only to find I had had a bowel movement and the pain was gone. Needless to say they never left town or drove into the city without first giving me an enema.

My next life changing occurrence happened my first year away from home in college. I lived in a dorm and could only privately use the bathroom late at night when everyone was asleep. This arrangement did not work well and I just quit having bowel movements. The result was I passed out on campus, was taken to the infirmary where the nurse got help from a couple of students who rigged a makeshift colonic to the bathroom sink and flushed water through me until I got relief. From then on I took laxatives, enemas, colonics, etc, anything and everything in order to achieve elimination. I have been hospitalized, diagnosed, ridiculed, tested and retested by the medical profession only to learn there is really not much that can be done for me.

I get acupuncture treatments every other week and take laxatives every few days. Cannot say that either is working very well, but without some relief, I have unbearable gas, bloating and pain. I don't go out socially unless I am forced. My family has accepted that I pass gas constantly and know that their ‘Oma’ has a problem.

I am so thankful I found your website and applaud your work. I will mail my check in the next couple of days. Please keep at it. I may not live long enough to see the results but my descendents will and for that I am so pleased. For me, just being able to share my story and read others has been a blessing.

– Name withheld by request
 

I'm a 32 year old female and have been battling constipation for many years. The two years I sought help from a GI were absolute hell for me. I wouldn't go for days, and then I’d spend a good 2 or 3 days in the bathroom in terrible pain.

I finally made it to the University of Michigan constipation clinic, and found some real help. I was diagnosed with a pelvic floor dysfunction, and referred to a physical therapist. Therapy lasted about 9 months, and I still maintain it daily with stretches; as well as modifying my daily and workout activities.

Since then I've added some medication for my IBS - polyethylene glycol, along with some nutritional supplements and fiber.

I saw so many negative stories that I wanted to add something positive to the mix. Although I completely agree that more research needs to be done to help those of us who suffer with this illness.

– Name withheld by request
 

Hi everyone. I am a female in my early 50’s. Looking back thru my childhood, I had constipation problems every so often. My parents told me it was because I was a very nervous child. (?) When reaching my late 40’s, problems started and have gotten progressively worse. Since 2004 I have been severely constipated.

Maybe it’s a coincidence, but the constipation kicked in full throttle after taking a well known bladder control prescription for about 2 months. I discontinued the prescription at the advise of my doctor, but my life has never been the same. I have been prescribed multiple constipation medications and none worked. GI tests showed everything normal. I have been to the emergency room at least three times to get an enema. Going 6 weeks or more without a bowel movement is what I have been living with for the last 3+ years.

I was able to get blessed relief thru colonics administered in a holistic physician’s office (every three months for a year) but the physician retired and no one else in my area did them. Two different colon cleanse regimens didn't work. I have tried every over the counter product, fruit, prunes, hot prune juice, dried fruit, and I still take daily fiber thru flax seed and bran cereal and drink plenty of liquid.

I work full time and have my own office with a bathroom near by so when I get the urges to ‘go’ throughout the workday, I can give it a try. The inability to have a regular/normal BM also interferes with my bladder and ability to urinate too. Bowel movements are painful. One time I even took a pain pill before I went because I knew how much it was going to hurt.

I have put on about 43 pounds in the last couple of years, not to mention become bitchy, tired, achy bloated and MISERABLE. I told my husband last night that I can not see living the rest of my life in this kind of pain and misery, let alone put him thru it. He understands what’s happening to me, is very compassionate and never complains only encourages me to continue the battle for some form of treatment. I didn't read anyone previously mention sex. Well, being severely constipated has ruined my once active sex life. I am going to end now and go have a good cry. Hang in there everyone! There has got to be relief somewhere down the road.

– Name withheld by request
 

I've had chronic constipation since I was young, and was diagnosed with ulcerative proctitis which comes and goes. My constipation used to respond to laxatives or fiber but as I get older it is more persistent. Diet or exercise makes no difference. Recently my gastroenterologist told me I have a long, tortuous colon, and that it's difficult for matter to get through it. Apparently there is no known cause or treatment. I've looked on the internet and found nothing about this problem.

– Name withheld by request
November 26, 2008

I have been suffering ever since my early twenties with IBS or chronic constipation. It is so severe at times; I'm sick and in extreme abdominal pain for hours until finally my body forces me to have bowel movement and it results in diarrhea. It is very inconvenient and very painful. I have to watch that I don’t eat too much and I watch what I eat. I have resorted to eating bran cereal every morning for breakfast and I drink more water than I ever did before but I still have problems. I was on the drug for IBS with constipation for a few years, until it was taken off the market, and then I tried the prescription drug specifically for constipation, which didn't seem to help at all. I do resort to using an over the counter laxative about every 3 to 4 months if I haven't had a bowel movement for 2 to 3 weeks.

I have bloating that makes me feel full all the time and it is painful to relieve myself. I have been to so many doctors and had so many tests including colonoscopy and the scope down my throat and nothing shows up. I am so tired of worrying when I’m out somewhere about when it is going to strike and afraid of eating a meal out because I don’t know how it is going to make me feel. I don’t seem to have any triggers. I have changed things that I eat and do and it doesn't change anything. I'm very active and I try to eat fruits, veggies and fiber and drink plenty of water. I need help!

– Name withheld by request

I am a 66 year old female and have had constipation since childhood. When I was 19, and on a honeymoon in Europe, I didn't have a bowel movement for 2 weeks. I was miserable and embarrassed to tell my new husband.

Numerous visits to doctors didn't help. When I was in my 40's, I saw a proctologist who prescribed a stimulant laxative daily plus a psyllium fiber supplement. For the next 20 years I was virtually problem free. Then, it suddenly stopped working. I have not found anything else that works either.

I suffer constantly from bloating, gas, and ‘urges’ that go on all day but produce nothing. Diet, exercise, and 10 glasses of water a day don't help. I will soon be taking part in a research study of a new medication that will involve 4 hours driving time, but I'm desperate. I have no social life and working, even part-time, can be miserable. I pray that something will be done to help people like us. 

– DJG

Just listen to me

People sometimes complain that their doctors "don’t listen" to them. It is essential to managing your disorder that you find a doctor who will listen, offer explanations, and work with you toward developing a treatment plan that helps. Your doctor may only see you for 15 minutes at an appointment, but you live with your body day in and day out – you are your own best witness as to what does and does not work for you.

If you feel your doctor is not listening, compile a list of questions and concerns, and ask for an appointment to discuss just those issues. If you still feel unanswered, consider finding another provider who will allow you to more actively participate in your own care.

I have suffered from chronic constipation from the day I was born; the staff would not let my mother leave the hospital with her newborn baby girl until the baby had her first bowel movement, which took days. Thus us the theme of the rest of my life. I didn't know that it was unusual to have a bowel movement every 1-2 weeks, until hearing friends mention it in college.

So far doctors have not listened to me when I tell them that, for me, taking a substance like Metamucil is like eating cement. No one believes it when I say that I drink 6-8 glasses of water a day, eat quite healthy, consume 20-40 grams of fiber a day, and have a regular fitness program. I take polyethylene glycol every single day (I'm aware that the OTC label says no more than 2 weeks of dosing) and am terrified for the day it stops working, because I am enjoying the effects of being 'clean' so much.

I'm enrolled in a study for IBS and am just so excited to find out if someone can help me. This condition is real, painful, embarrassing, and I think definitely treatable, if someone will just listen to me and take time to investigate a little more.

– Heather

We are often asked "What is the normal frequency for bowel movements?" Here is a question and answer addressing this issue we have posted in our Clinical Corner.

Question – How long can a person go without having a bowel movement before seeking medical attention? Could this ever become urgent and warrant a trip to the emergency room?

Answer – Constipation is a symptom, not a disease. The exact definition of constipation is problematic. Patients and doctors often define constipation differently. Doctors relate primarily to the frequency of bowel movements in a given time period (usually per week). Patients usually relate to the effort required (straining), to the consistency of the stool (hard), and to the feeling that they cannot entirely empty themselves.

Most people have their own 'personal' bowel habit. They may have a few bowel movements a day or a bowel movement every few days. Doctors usually define constipation as less than three bowel movements per week and may define severe constipation as waiting more than a week for a bowel movement. However, some people have less than a bowel movement a week and are not bothered by this at all, while others may find this physically uncomfortable or emotionally distressing. Just as there is no 'magic' number of bowel movements that an individual should have, there is also no magic number that defines when constipation is a medical problem requiring immediate evaluation or intervention.

An important question that should be addressed when deciding whether constipation should be evaluated or even justifies a trip to the emergency room is whether it is acute (of recent onset) or chronic (of long duration). Cases of acute constipation are more worrisome and might indicate a significant underlying medical condition such as bowel obstruction. If constipation is associated with 'alarm symptoms' such as severe, worsening abdominal pain, extreme abdominal swelling, fever, nausea and vomiting, or if new-onset constipation occurs in an older person who is usually regular an immediate medical consultation should be obtained.

Most cases of constipation are chronic, having lasted for years, and are not associated with 'alarm symptoms.' It is usually related to a functional bowel disorder, such as irritable bowel syndrome (IBS). However, there are other possible causes of chronic constipation including medication use, hormonal problems, pelvic floor disorders, neurological disorders like Parkinson’s disease, and other conditions. Thus, if any of these possibilities appears relevant, a non-urgent medical evaluation would be logical.

 

– Ami D. Sperber, MD and Roy Dekel, MD

Adaptation

Circumstances differ from person to person. Managing a chronic bowel condition often means making choices others aren't necessarily faced with. Be aware of the ways you adapt to your symptoms. If the sacrifice seems too great, seek help.

My constipation problems started over 10 years ago in my senior year of high school. I would take laxatives in order to allow my bowels to move. After my doctor found and repaired an internal prolapse in my rectum, my constipation got much worse. I started taking more laxatives, stool softeners, and enemas daily. Between the summer of 1998 and the spring of 2000 I was tested extensively, even traveling to hospitals in different states.  All of the doctors agreed that I suffered from severe colonic inertia.

 

In May of 2000 I had a total colectomy (removal of the colon) and ileorectal anastomosis. The surgeon told me before and after the surgery that there are no guarantees with the surgery; I could still suffer from constipation and have to take laxatives daily following the surgery. I started going to see a new gastroenterologist in August of 2002 because I was having trouble evacuating my bowels on my own. Tests to check my pelvic floor came back normal, so I went to see a physical therapist to help work on my pelvic floor muscles. None of the medications that I was prescribed to help me evacuate my bowels on my own worked. The last time I saw him he told me that he could not do anything else for me and referred me to another hospital. I was still having trouble evacuating my bowels, would get constipated, and then have loose bowel movements.            

 

At the next center, I had the same pelvic floor tests done again. The results came back that everything was normal. This doctor also said that he could not do anything for me because I do not have a diagnosable problem. 

 

Since seeing this last doctor I have not gone back to any gastroenterologists. I was tired of all of the different prescription drugs they would have me take and all of the tests they would put me through. I wanted to live my life the best that I could.

 

Today I still have the same problems as I did in 2003. My life revolves around going to the bathroom. I can't work a full time normal job like everyone else. I tried for 9 months and it was hell.

 

I am really glad to share my story with others because I understand what they are going through. I am a very strong person and push through life the best I can. A lot of it is mind over matter. I don't feel great most of the time but I keep busy and try to forget about what hurts. I clean my house and exercise to keep busy. My main wishes in life would be for people to be more aware and understanding of digestive problems and to find a career, mainly a job, that suites my digestive needs. I know others feel the same way. Another dream would be for people to not be embarrassed to talk about digestive problems. I tell people all the time about my digestive problems, not to the full extent as I here, and feel good about doing it. The public needs to be educated because one day they may suffer from one of these problems. 

 

– Michelle Pollus

Hi, I am Jackie a 40 year old woman living with chronic constipation. From as far back as a young child I remember my mother telling our family members and close friends of my problem. Just to make matters worse as I reached twenty I had parts of my bowel removed due to a blockage and now have scar tissue. This made my condition worse. I suffer with not going to the toilet for normally a week and then it's painful and not much generally appears. On the other extreme I eat a meal and my body can take a dislike to an item; then I get such an upset tummy I spend the whole night on the toilet! 

I've tried all sorts of remedies and not much helps. We are all dealt a pack of cards in life. This is mine. It's not the end of the world. I just stay focussed on whats most important to me.

– Jackie
 

Sacrifice

People with irritable bowel syndrome (IBS) may have symptoms that overlap with functional constipation. But people with functional constipation may not have the abdominal discomfort or pain, or alternating bowel habits seen in IBS. Nevertheless, many of the personal challenges and sacrifices are the same when battling symptoms.

I am 39 years old. When I was a teenager I remember going days without having a bowel movement and then I'd have terrible painful bouts of diarrhea. I thought this was normal. When I reached my mid-20’s the constipation was more remarkable. I found an herbal laxative that worked for me until it suddenly stopped working in 2001. I started to go to GI's at this time to find out why I couldn't have normal BMs. I started doing enemas, afraid that stimulant laxatives would aggravate the condition, whatever it was. All my tests kept coming back ‘normal’ and over the next 7 years I was told everything from ‘eat more fiber and drink more water,’ to ‘try some anti-depressants because anyone in your shoes would feel depressed.’

During that period I was diagnosed with endometriosis which caused a lot of my pain, and as a result had a complete hysterectomy. I also figured out on my own that I could not eat gluten or a lot of dairy productsFiguring those issues out made a huge difference in that I was at least able to leave the house (at that time the gas was so unbearable I can't even describe – and gluten was the biggest cause).

I have tried every single laxative available including prescription medications whose side effects are diarrhea, and none of them worked, including Zelnorm.

I have recently been diagnosed finally with Colonic Inertia which I am just learning about. I find the enemas along with VERY careful eating (mostly protein, very little fiber) keep the gas and cramping down to a minimum. 

I am in good shape and exercise a lot. I work from home on the computers and am very grateful for the opportunity to do that. I am unmarried, no kids, no roommates. I have sadly found that it is far more comfortable to live alone and deal with the enemas and general GI upset solo. It is difficult for anyone who does not have issues going to the bathroom to remotely understand what it's like for someone who does.

This has been a challenging body to live in for sure. Thank you to www.digestivedistress.com and IFFGD for all you do to help all of us. :) One day I'd love to feel comfortable on a vacation in a single hotel room with someone, or even living together!

Name withheld by request
 

At 38 years of age I am once again up at 3:00 am with increased GI discomfort and worried why my symptoms are becoming worse. My bloating is so severe that the pants that were loose on me 6 days ago are barely able to be buttoned now.

I am a registered nurse and work hard during the week looking forward to my much needed rest on the weekends. As of last night (Friday) I have had a complete change in my weekend plans. I will not be able to go to the Farmers Market with my husband. I will not be able to meet with a friend in need later this morning. I will not be able to meet with friends later this afternoon. I will not finish my craft room re-do. I will not leave the house. Instead I must start a plan of action prescribed by my physician which includes a 4 stage process to help me evacuate my bowels.

This plan went into effect last night a 5:00 pm when I arrived home from work. It will consume my entire weekend, and will hopefully resolve my current bout of constipation in time for me to return to work Monday morning. I will be close to my bathroom all weekend in hopes that my plan of action will be effective.

IBS is real. It is painful, consuming, physically and mentally challenging, costly, and relentless. The burden of this illness needs to be understood and better treatment options for me and others with IBS need to be made available.

– Name withheld by request

Searching

For many persons, having a functional 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.

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

I am a 63 year old male. I have been diagnosed with pelvic floor problems (Levator Spasm). The rectal muscles are in a spasm, which makes you feel like there is a foreign object in the rectum. I didn't have any constipation problems until June 2011. I use to have normal bowel movements every day. Now I only have a BM every two days after taking a laxative. I was also recently diagnosed with Urinary Retention. When I started to have Urinary Retention, is when the constipation problems started. I wonder if Urinary problems are causing the constipation?

– Name withheld by request

[Editor’s Note: Pelvic organs share certain nerve connections; there is an inter-relation between bowel and lower urinary tract function. It is not uncommon for co-existing conditions to occur in the pelvic floor area. Share all these symptoms with your doctor.]

I was constipated a lot when I was a kid. My mom took me to the doctor, and the doctor said my constipation was caused by drinking too much milk. I started drinking less milk and then my bowel movements became normal. I hardly ever was bothered with constipation again. In 1992 I was diagnosed with Levator Spasms. Levator Spasms are spasms of the pelvic floor muscles. This problem causes constipation in some people. At that time I wasn’t bothered with constipation. I started having constipation problems in mid-June of 2010. I have a high fiber diet, exercise regularly, and I drink a lot of water, but I am still constipated. I have had a colonoscopy, prostate exams, and blood tests. All my tests came back normal. I am going to keep adding more fiber to my diet to see if that helps.

– Name withheld by request
August 14, 2010

I am a 62 year old male with pelvic floor spasms. These spasms make you feel like you have a golf ball in the rectum. I have had these spasms for the last 18 years. I also have IBS and what I call a chronic sleep problem. I can only get 3 to 4 hours of sleep each night. Sometimes I just get 2 hours. I eat a high fiber diet and drink a lot of water, which produced a bowel movement nearly everyday. The constipation problem didn't start until I had sleep problems. I have been to my family doctor and he has done several blood tests to see why I can’t sleep no longer than 3 to 4 hours. All blood tests came back normal. I don't like to take laxatives or enemas to have a bowel movement. In January of 2010, I was not having any sleep problems or constipation problems. I started to have sleep problems in May. Since May, the sleep problems and the constipation have gotten worse.

– Name withheld by request
July 12, 2010

I too have struggled a long time. I’m trying align, I've used laxatives and over the counter remedies. Recently, I've been eating no meat, only a vegetarian diet. To my surprise I find that this diet and a probiotic supplement with B. infantis 35624 are for the first time allowing my own body to function.

Name withheld by request

I know I'm not alone even before reading these stories. But like the rest of you this is MY constipation story and at times I do feel all alone.

There are times that when it becomes obvious to friends family and co workers that something is wrong. You feel as if you might as well have cancer... that way people tend to be more understanding of your situation. Otherwise you can't POSSIBLY explain what's going on with you in one sentence - it requires a novel! Sound familiar with anyone?

I had all the lovely poking and prodding tests, at 2 different hospitals. Sometimes the people performing the tests made me feel as if I was wasting their time once it was clear that nothing was showing up. I imagined them calling me a hypochondriac once I left the room. I have chronic lower left sided pain, chronic constipation, and weight loss due to inability to eat normal portions. I do laxatives, probiotics, and fiber supplements. I’ve had adhesions removed. I am now urinary incontinent, both stress and urge. I think I may have a neurological problem because I have tingling in my extremities and symptoms like Raynaud’s disease in my hands and feet. I'm reaching for ANY answer at this point. I could go on, but I see the same story line here with all your stories. Thanks for letting me share.

Name withheld by request

Hello to all of you. I have never known anyone that has problems such as I do till I found this site.

My problem started with endometriosis that was severe adhering the uterus to the colon and affecting my ovaries, tubes, bladder and ureters as well. Fifteen years ago I had a subtotal colectomy with ureteral stints by laparascope. Three months later I had a blockage from the bowel telescoping onto itself. I became septic and had to have more colon removed. Five years later the constipation returned with a vengeance. I had an open abdominal surgery next to remove more colon. I have tried every medicine I know of for constipation. I am now not able to go whatsoever on my own without help.

I live in the bathroom. My social life is now gone. I have cramps constantly and am at the end of my rope. I went for a consult for an electric modulator that could be implanted in my spine to stimulate peristalsis. I read about it and it works. Insurance company denied it. I am now headed to the Mayo clinic next week to see what could be offered to me there. The GI surgeons here have one solution for me...removal of entire colon and an ostomy. I am not thrilled about that, particularly since I would eventually like to find a mate and they say I may still have cramps, from what I can't understand. I feel like I am just getting older and older and am so sick of all this. I truly wish I could find some friends like me. Nobody understands-I feel so alone, frustrated and not very hopeful. It is a struggle getting up everyday. I just want to say I feel your pain and am glad I at least found a website that I can ventilate. Thanks for the stories you shared

Donna

I am a 28 year old female who has suffered from chronic constipation most of my life. I altered my diet and exercise and still I either had painful bowel movements or none at all. Back in December 2007, my bowels stopped functioning altogether. So now I'm dependent on laxatives which is costly and miserable. Unless you've suffered from this, you don't know how bad it can affect everyday life. Some days I can't eat because I’m bloated. I’ve lost eighteen pounds because of this issue and that lowered my self esteem. I have been to three GI doctors who all say the same thing, my colon is fine. I'm very frustrated because I pay all this money to doctors who can't help me. Technology is too advanced for physicians not to have answers for people like me who suffer from this illness.

Lea White

Hello. I’m a 40 year old female and have had chronic constipation since childhood. I’ve done everything in my power to try and solve this problem, ranging from laxatives to a strict elimination diet  to high colonics to complimentary and alternative medicine. Been to half a dozen gastros in southwest as well as 2 colon rectal surgeons...all told me it was either ‘in my head,’ ‘not solvable,’ or ‘to eat more prunes.’ One colon rectal surgeon referred me to Mayo, AZ. I was diagnosed in 2004 with pelvic floor dyssynergia. Relieved to attain diagnosis, yet frustrated at the same time.

At Mayo, went through a dozen or so biofeedback sessions to ‘relearn’ how to defecate. Unfortunately this has not worked for me. Received botox shots into rectal muscles this past year.  Did not work.  I feel I have two options left:  sacral nerve stimulator or  colectomy (removal of colon with stoma).

At times I question if life is really supposed to be this unbelievably difficult. Honestly, the ONLY time I DO feel better is when I DO NOT eat and DO NOT get a menstrual period.

My immune system is also compromised.  My symptoms began in mid 1994 after a strange constellation of misdiagnoses: liver function problem; gallbladder stone(s); or mono.  Negative to all, with removal of gallbladder in early 1996.  Not been the same since this organ was removed!

Is there a Dr. House in the house? Not getting easier... Have not ruled out neurological problem for constipation based on family history of neuro problems.

In summary, as a single female, my future is unknown in multiple realms...financially, physically, emotionally, and of course socially. I am afraid and limited because of no emotional support system. IFFGD has been my saving grace during the horrible exhausting times.

Name withheld by request

I'm now 39, but since I was a preteen I've battled constipation. My husband doesn't want to hear about my problems, so it's a lonely battle. Since the stomach pain is so bad now, I've given up wearing jeans and only wear sweats with a drawstring waist. When I dress up, I wear styles with no waistband. Belts are totally out of the question. Exercising is painful, and running is not an option anymore because of the pain. I am not overweight, and I have beaten breast cancer, earned a black belt in tae kwon do, and am raising two foster-adopt children. Hardship is no stranger. But no one wants to hear why you can't go to the bathroom for days. I empathize with all who suffer as I do, and pray for relief soon.

Name withheld by request

Well, I am 29 years old and it all started when I was a teenager. I will go 4-6 weeks without having a BM. I have had all kinds of tests and nobody really seems to understand or care about how much pain I am in at times. One time the pain was so bad my husband took me to the ER and they said it was just a virus. I am so tired of all of this – the cramps can ruin a family outing in seconds. I have three girls and they don’t understand either. What is a busy mom to do?

Jamie

I was a constipated baby and throughout my childhood I remember passing hard stools. But the real troubles began 23 years ago in college.  In my late 20's it got to the point that I was afraid to eat. After telling my parents this they suggested I see a GI doc.  I took their advice and he did a colonoscopy – it showed I had a 'long floppy colon' and the usual fiber therapy was recommended.  That acted like cement and any bran, oats etc. just wreaked havoc on me. 

I think I just started using any laxative that would work.  That went on until my early 40's. I was taking handfuls of laxatives and feared I was injuring my colon. I wound up seeing another GI doc who referred me to a surgeon.  A Sitzmarker study was done and showed very slow motility and it was recommended to continue the laxative I was using and to try to decrease the dosage. But the only thing that got results was double and then triple the dosage. This went on for 5 years and now my colon has ceased to function at all. With a recommendation from my GI doc I have been on polyethylene glycol 3350 (Miralax) and have even tried bowel preps twice with no results. I have now resorted to large volume enemas – a very miserable option. Sadly enough it has totally consumed my life and I almost wish I were a candidate for a colectomy. I only fear that is trading one problem for another.

Name withheld by request

I have been constipated since my teens. The longest I've gone without a bowel movement is 10 days. I feel like my life revolves around laxatives. I exercise for 2 hours at least 3 times a week, I drink 8 glasses of water a day. Fiber supplements turn to cement in my bowels; anything high fiber seems to constipate me more.

I love to go on vacation but it's so difficult with my bowel situation. I have to time everything with taking laxatives. If I don't take any I'm miserable and can't go, if I do and the timing doesn't work, it ruins the whole trip and I'm so worried that I'll have an "accident" while on a tour or while traveling where bathrooms aren't easily available.

– Name withheld by request

All my life I lived on over the counter medicine for gas relief. You name it, I've tried it. Nothing worked. I wake up in the morning with a flat stomach. The minute a drink or food goes in my mouth, I look like I am pregnant! Even water bothers me. I love food, believe me! But I do not look forward to meals at all. I am constantly bloated and I feel like I always have gas. How do you explain to your lover that you don't want to be intimate because your stomach hurts and you are afraid of passing gas! How do you tell your friends you don't want to go to the beach today because your stomach looks too big for your bathing suit. How do you tell yourself you look good when you try on clothes at the store and cannot button the pants size you should fit into. I feel horrible all the time.

The one prescription drug that finally worked for me is suddenly no longer available. One doctor told me, "Sorry, nothing is going to work as good for you." Now what!

I have been to many doctors and many have treated me like I am an idiot. Nobody believes me. I am off again to see another doctor and I am not sure how this will go. I have been off medication for a few months now and I am tired of feeling sick all the time. I have not even found a diet to help me. I recently found this website and I was so excited to finally see something that showed encouragement and a desire to want to help people. I just hope someday we will be able to find relief!

– Kristen

 

There is very little help in the UK for digestive problems and a lot of prejudice towards them. People seem to think that everything 'is in the mind'. I agree that stress can be a problem and that the brain-gut messages play a part, but this illness is also so physical, painful and debilitating in how it manifests. Work has to be geared around either waiting for hours for laxatives to work, or not being able to stop going when they have. A few weeks after I told my last employer about my condition, my position was made redundant and I was let go (even though I had gone to work throughout it all for years. I can't help but feel it may have been connected). I am a radio presenter by profession and my dream of doing a breakfast show has to remain just that.

The worst of it is, the feeling of being on your own with it all and how badly it affects normal life. I am so grateful for my current improvement and empathize with everyone who suffers with these kind of disorders. Fortunately, my husband has been a big help, which has been a God send. Thank you also to all of the doctors and those at IFFGD who are trying to find out more!

– Name withheld by request

Last modified on January 9, 2014 at 02:32:24 PM