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.
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 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
December 20, 2007
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
July 17, 2007
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
October 28, 2007
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
July 23, 2007
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.
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
February 24, 2007
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.
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
June 23, 2008
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
Feburary 9, 2008
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
November 29, 2007
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
August 3, 2007
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
July 24, 2007