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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.

Whether you or a family member has a disorder, we invite you to view more stories or share your own through our grassroots arm, the Digestive Health Alliance (DHA).

Taking Action

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has." - Margaret Mead

IFFGD is a one of a kind research organization devoted to solving Functional Bowel Disorders. These disorders are not usually openly discussed but need to be because so many people are afflicted with this disease process.

Functional Bowel Disorders are disabling and treatment options are limited because enough medical research has not been done to find a cure. These disorders don’t have the public awareness or universal support because they aren’t spoken about and are not as fashionable as Cancer, Heart Disease, Stroke. It’s time that Functional Bowel Disorders be brought out of the closet and given the public attention and awareness they deserve.

I know that many people are hesitant to discuss anything to do with bowels or disorders thereof because they feel the subject is too personal and embarrassing. If only the general public could hear about the life disruption, pain, disability suffered by persons with Functional Bowel Disorders then it could become as accepted and recognized as other diseases, like Crohn’s Disease, and encourage all Americans to get behind supporting research leading to a cure. Persons with Crohn’s have publicized their disease process and the need for research and treatment options to be developed.

I have taken steps in my Estate to support IFFGD and I strongly encourage all other persons who are afflicted with these disorders to publicize the disabling effects of these disorders and get the American people behind supporting Research & Treatment Regimens to cure these Disorders. If enough people get behind this cause and make themselves known and the disabling effect that having these disorders have on a person’s daily life activities perhaps serious funding and research on these disorders will occur leading to a cure.

I would encourage other persons to follow my lead and get behind IFFGD to support research to find a cure for these disorders. Even the smallest donation can make a difference and raise public awareness to the seriousness of these disorders and their life changing effects.

Name withheld by request

Searching

For many persons, a functional GI or motility 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 believe Mom says I was around 18 months when I started on my cyclic vomiting adventure. Back then it used to be almost every month. I would start vomiting and not stop and most times I had to be hospitalized due to dehydration. As I grew older, the time between episodes would lengthen, until now when I only get it about once a year. For that, I am very thankful.

I think the worst part for me was the need to drink. I wanted water in ways that are impossible to describe now that I’m fine. I was allowed water to swish with after I was done vomiting and I would try and sneak sips. I would always regret this afterwards. Mom was very supportive but she just didn’t understand. For one thing, I didn’t know when something was going to come up until it came, so I never had time to reach a bathroom. For another, she didn’t get that I couldn’t stop. She would sit on the couch next to me and rub my stomach and keep saying over and over that I needed to calm down and try and stop. I guess she thought it was a temper tantrum and in a few moments I could get over it. Moving made me feel terrible. I remember sometimes lying in the kitchen next to the table. I wanted so much to be part of the family during these times, but I could barely sit up.

About a year ago I had a really bad episode. I had to be hospitalized after the first ten hours. I was incredibly lethargic and hungry because I had not eaten or slept for the past few days. Because I was no longer ten I had to be actually admitted into the hospital instead of kept overnight in their forty-eight hour room for younger children.

I basically live in fear that another episode will decide to show itself in school or at the movies. I have plans for all my classes if I get sick in one of them. I freak out if I get even the slightest bit nauseated. I can’t describe the helplessness I feel during episodes. I hope that people will find a way to stop this thing, because it’s terrible.

[Editor’s Note: Cyclic vomiting syndrome (CVS) is a disorder with recurrent episodes of severe nausea and vomiting interspersed with symptom free periods. Children or adults with CVS often go to an emergency room (ER) for treatment of the acute vomiting phase, where the diagnosis is sometimes missed. It helps for the patient to have a letter on hand from their regular treating physician that describes: 1) the syndrome and 2) the appropriate personal treatment.]

Name withheld by request

Five years of constant chest pain, vomiting, sore throat, sleeping difficulties and I have had enough. I’m now 31 years old and have been diagnosed with a rare disorder called nutcracker esophagus. As the name suggests, I get enormous pressure in my esophagus causing it to narrow completely when I swallow. On top of this I suffer from GERD. I have had countless endoscopies, a Nissen fundoplication, a heller myotomy (to take out the muscle in the wall of the esophagus) plus dilation of the esophagus which has to be repeated every 3 years for the rest of my life. I haven't slept a whole night in 5 years. If I need to get any more than 4-5 hours sleep in a row I take a sleeping tablet to help, otherwise I regurgitate into my mouth whenever I lay down. I rarely eat dinner, my last food intake is by 4pm so I don't have ANY food in my stomach at all by bedtime, but still the chest pain lingers and burning throat as well. If anyone else out there has a similar story please share it, as I know nobody at all with this condition and I feel alone.

[Editor’s Note: Nutcracker esophagus is a condition where swallowing contractions are too strong. More information can be found here: Go »]

Kelly

I have to just start off by saying Oh My God........ this website is amazing. By reading everyone's stories I am touched that there are people out there that may be or have gone through some of the same things I have and are just as frustrated as me. It’s crazy to think that there are so many gastrointestinal disorders or diseases out there that can’t be solved. We must change that. There has to be an answer! Today I am fed up with hearing doctors say that there is nothing wrong with you and looking at you like you are a hypochondriac. Obviously it is not in my head and the symptoms and pain I have is real. I am here to say we can not give up! We need to fight. I know all of our problems have affected out lives and affected who we are, but there are answers and we are going to solve them.

I am 23 years old and have been battling a GI disease for almost the last three years. I have been diagnosed with lymphocytic gastritis and gastroparesis. My symptoms have progressively gotten worse over the last three years. It first started out that my appetite became suppressed and I wasn’t eating as much. Then it became I wasn’t able to eat a lot of certain foods and the doctors diagnosed me with GERD. Then it became I was constantly throwing up my food and not able to keep anything down. That’s when it became real serious. Over the last three years I have gained and lost over 100 pounds and have been in the ER about 9 times for chronic severe abdominal pain and fevers. The doctors at the ER just say I am extremely dehydrated and have an infection. CT scans, MRI's, endoscopies, colonoscopies, etc all come back looking good; so the question is WHAT IS WRONG?

I have been going to the Mayo Clinic in AZ for the last two years; no answers. I have been on steroids, this medication, that medication, you name it. Nothing is working. I am done living like this. Like everyone else it has affected my work, my personal life, my social life, my everything. I am cranky all the time because I can’t eat nor drink really anything without it coming up. I don’t want to live like this anymore. I want to be myself again. I want to be able to eat normal food. I want to be able to go out with friends and be able to participate in the festivities. I want to be able to pursue with my career path. Again, WE CAN NOT GIVE UP! We have to be persistent and fight this no answer crap. I understand the pain everyone is going through and all the frustrations and the life changing illness everyone has. Lets stick together and fight!

Shannon

I, too, am writing in response to Anthony's story. You are not alone. I live in Alabama, and this is my nephew's story. He was born in 1994. He had constipation problems since birth. He never had a normal bowel movement. As he got older, we noticed a protruding belly. It was so bad that we nicknamed him Pooh, because his tummy looked like Winnie the Pooh's. My sister always complained to me that something just wasn't right. She continuously gave him laxatives and suppository medicine to try to help with the constipation. Finally, she had to end up getting prescription medication from his pediatrician.

At age 8, he became very ill. I told my sister to take him to my children's pediatrician who realized immediately that something wasn't right. He was sent a hospital in North Alabama and had to have immediate surgery. He went 8 years undiagnosed before we found it was Hirschsprung's disease!

He had surgery and no longer has constipation problems, but a new problem arose after surgery and has continued since his surgery. He has some incontinence problems. The surgeon said it would take a couple of years to get better, but he will be 15 in November. We all thought that once his first surgery was performed and he healed... everything would be okay. My wish is that pediatricians will have more knowledge about this disease and not just prescribe medicine to help with going to the bathroom.

[Editor’s note: A number of bowel problems can persist after surgical treatment for Hirschsprung’s disease. Here are some articles from IFFGD to help sort this out, including treatment approaches:
(830) Defecation Disorders after Surgery for Hirschsprung's Disease
Go »
(839) Hirschsprung’s Disease in Children and Adults Go »
(840) Bowel Problems in Adults After Surgical Treatment for Childhood Hirschsprung’s Disease Go »]

Name withheld by request

Years ago, doctors diagnosed me with diarrhea, GERD, diverticulosis, and more, but no one really ever gave me follow-ups on what to do. Things I ‘shouldn't’ eat don't bother me, yet some foods that are supposed to be good for me, I can't eat. The majority of times, half-way through a meal I end up in the bathroom. I travel a lot, and it is so depressing to stop and have a meal, and then, having to wait around until I use the facilities. Either that, or get back on the road, and 10 minutes later have to fight to find a gas station. I am so sick of all this, and not one doctor will take me seriously.

Name withheld by request

I am 58 years old. About 2 1/2 years ago I began experiencing severe abdominal pain, mostly in the lower right side, with diarrhea. I started losing weight because my symptoms got worse when I ate. I had 3 colonoscopies, 3 upper endoscopies, swallowed a camera twice, and so many CT scans and MRIs that I lost count. All of my tests were normal. I am thankful that my providers knew me and never did tell me that nothing was wrong. For most of 2008 I lived by following a strict routine of taking a pain pill before I ate and following a very restricted diet. I would have flare ups of increased pain and diarrhea but I could usually manage to get them under control if I ate even less. Finally there was nothing I could eat without pain and diarrhea and the pain pills didn't work at all. I went to the gastroenterologist again out of desperation and he tentatively diagnosed me with eosinophilic gastroenteritis. I am on steroids and a very odd diet now and am doing better. I can't even begin to relate the impact that this has had on my life, but then I don't have to because you all understand.

Name withheld by request

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 first started experiencing symptoms many years ago. I had constant heartburn, burning stomach aches, burning mouth; I always felt nauseous and I was constantly chewing on antacids, which did not help. Then I was no longer able to eat any foods or keep anything down. My doctor refused to listen to me and told me that young people do not have intestinal disorders and that I simply had an eating disorder since I was losing weight. However, the symptoms continued to control my life, I felt sick everyday, and I lost 20lbs. 

I finally changed doctors who gave me an upper GI and found out that I had GERD, among other gastrointestinal disorders. Medication made my life so much easier in the beginning, however I have had to switch medications often and I always have to be careful about what I eat, when I eat, and I still sleep with the head of my bed propped up. The good news is that I have a new specialist who actually listens and is helping me to find treatments that work with my lifestyle. The lesson I learned is to listen to my body and to always have a voice with my doctors, because no one knows your body better than you.

Name withheld by request

I felt so touched by Kristen’s August 3, 2007 story that I can't stop crying. I did not think there was another person feeling the same way I do.

I have been diagnosed with gastroparesis, and I am also lactose intolerant. My main problem, besides nausea when I eat, is that I feel so bloated that I tend to isolate myself from others. This is definitely affecting my marriage. I feel sick, uncomfortable, unwanted and hopeless. The medication I'm taking is not doing anything for me, and the other options are either not yet approved to be sold in US or have too many side effects.

The only thing that keeps me going is that I want to have beautiful kids with my loving husband one day. I love my hubby so much for understanding me and caring about me. Some day I will find the medication that will make me feel better.

Name withheld by request

I read the young man's story who was diagnosed with Hirschsprung's Disease at birth (below, under 'Perseverance'). I am a 56 year old female, who was diagnosed with this, along with a pelvic floor disorder two years ago. The specialist who finally diagnosed me told me that I have a relatively mild form of the disorder, but believe me, it is enough to make my life very complicated. From as far back as I can remember I could never have a bowel movement without a strong laxative. I always had bloody stools and by the time I was diagnosed, I had had 6 surgeries to repair damage to my colon and anus. I was left totally incontinent by the end of the final surgery. I found out that all the GI doctors and colorectal surgeons had been giving me the wrong advice my entire life.

I now have the mixed problem of not being able to go the bathroom or using laxatives and having to live in the bathroom for days on end. In the meantime the pain from bloating and the pelvic floor disorder is enough to make me dysfunctional the majority of the time. Is there anyone else out there who is dealing with severe constipation caused by a neurological defect, combined with a pelvic floor disorder, and complicated by fecal incontinence? If you have found help anywhere, I would love to hear from you. My doctor says the current surgeries have a very low success rate, but he is looking into an electrical stimulation implant.

[The role and current progress in our understanding for electrical pacing and stimulation in the GI tract is discussed in this 2007 Fact Sheet, No. 540 from IFFGD.]

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

 

I am a 23 year old female living in New York City. I loved school, traveling, enjoying my friends, eating out, and enjoying my life until I developed symptoms of IBS about 2 years ago. My symptoms are sometimes so severe that my life has been interrupted by this disease as I am often afraid to leave my apartment for fear that I will have an episode. I constantly experience stomach pain, and I am always worried that I am going to feel sick. I have been to numerous GI doctors, had many blood tests, a sigmoidoscopy, and all with no findings except that I have severe IBS. I have yet to find a medicine that helps and all I want is my life back, to feel healthy and like myself again. I am comforted to learn that there is a large community of people that understand my symptoms. 

– Name withheld by request

At a loss

Tips on Talking to your Doctor

    An effective doctor-patient relationship is an important part of managing your symptoms effectively over time. Here are some tips and tools to help you. Go »

Functional gastrointestinal disorders are not caused by stress, but having them can certainly be stressful. While there is no cure for many of these disorders, symptoms can usually be improved when working with a knowledgeable doctor. Sadly, not all doctors understand these conditions, leaving their patients to find solutions on their own. IFFGD maintains a resource list of physicians interested in treating patients with these conditions, which can be found here.

It has been five good years of my life I have been going through this terrible experience. I feel consistent pain around my abdomen coupled with the need to drink more water than usual. I have tried ulcer treatment, taken herbs and even bought some hemorrhoid drugs to no avail. I feel very uncomfortable when sitting among people and they start to hold their nose or move away because of my distasteful scent.

Please help me or else my education and my soccer career will be ruined just because I can not be around people. I am living a very lonely life with no one to help me but I thank God that you give me the chance to at least speak my mind. Thank you for that.

Ousman

[Editor’s Note: We suggest you make a list of your signs and symptoms, and seek a diagnosis from your primary care doctor or a gastroenterology specialist. Proper treatment begins with an accurate diagnosis.] .

This is really about my husband. In 1998 he had his gall bladder removed and life has been pure hell for him since. Test after test reveals all is normal. But is it normal to produce multiple yellow watery movements on a daily basis? He is 58 yrs. old. I think his nerves have a lot to do with it but I can't make him see that. He drives a truck and doesn't always have the luxury of a toilet close by. I think his anxiety level is so high he creates a lot of his issues, but I could be wrong. When he's laid off in the winter, and at home, the problems seem to decrease. Except now, because he's gone back to work, it's starting all over again. He's afraid he's going to lose his job over this.

He was recently diagnosed with reflux, stage 3, but has never had heartburn. I think he has bile reflux. He's on a PPI, but still gets little relief. We are both at our wits end, as well as our doctor. Has anyone else gone through this, and what can we do?

Diana

[Editor’s note: Here’s information from the Mayo Clinic about diarrhea after gallbladder removal.].

My life was so cool and there was a time when I used to say that I loved my life, but now its not the case. More than an year ago I joined a new job on the night shift, and then one day I started experiencing bad gas which made me very uncomfortable. Then I started passing semi solid stool every day. There will be lots of bad gas coming out every 5 minute (sometimes I don’t even know it’s happening) - it was so disgusting that I was unable to concentrate on work and I had to leave my job because of the poor performance. I consulted many doctors and tried many drugs but nothing helped. I stopped going out with friends, because of the fear that my friends should not come to know about my bad gas problem wherever I go the people around me used to react as if they have had a very bad smell and it still continues. Now I don’t go out much, I stay with my family at home because I have started developing this fear of going out.

I had all types of blood tests done and colonoscopy too, with no positive results. The doctor came up with the result that I have no problem and I am just simply creating all the problems and stressing myself, and suggested I should get married to get rid of these problems! He never believed me and sometimes he used to laugh which made me more stressful. I want have to have a successful career, so I don’t want to marry so soon.

Its been a year and a half with this problem, but I have not given up hope. I try to be positive and I have hope that one day I will become the way I was before. Right now I am consulting a gastro specialist so I am hoping for the best.

Name withheld by request

Perseverance

Hirschsprung’s disease is a condition that people are born with. It occurs in about 1 in 5,000 births and is treated with surgery. But as expressed in this courageous story, the interventions or amount of suffering experienced does not correlate with getting along in life.

I was born in 1983 and I was into my teens before the subject of Hirschsprung's came up. I found out from my mother that I "had an operation" when I was about two. I was kinda shocked that she never talked about this before, and that apparently I had some muscle removed (at 14 you do not want to discuss your missing bum muscles with your mom!) This explains the issues that I've had growing up that I was embarrassed by and thought that something was wrong with me but was too ashamed to talk about. It's not like I was comfortable enough to ask my doctor about my leaky bum or the fact that I pass gas A LOT and I bloat enough to go up a pants size some days. My parents are now both deceased so I don't have someone to ask for specifics about what was done and I'm still really embarrassed to talk to my doctor about this especially since she has seen me since childhood and will wonder why I didn't say something earlier... On the bright side, with the help of the internet and sites like this I've identified foods that help me, foods that harm me (found out I'm officially lactose intolerant too)and ways to minimize any leaks (they occur more when stressed, bloating and super gassy from certain foods). Hopefully I'll bite the bullet and go see my doctor about this, butt (haha) for now, I'm still working up the courage.

Name withheld by request

The doctors gave me a month to live. I was born in July of 1977 and, according to family/friends, I was a normal sized baby. I started having problems having bowel movements and eating. After many tests and heart wrenching time the doctors diagnosed me with a Hirschsprung’s disease.

Through stories and records; I know that, as a baby, I faced 8 different surgeries and extended hospital stays before the age of 4 1/2 years. I had several surgeries including a couple pull-through operations, numerous colostomy surgeries and other major surgeries. The hospital became my second home. I don't remember much; I do remember the playroom and my day nurse her name was Kathy. After surgeries and the hospital, I progressed to have a ‘normal life’. I was held back in 1st grade because I could not read well. I struggled academically and thank the teachers who helped me. I struggled but pushed myself and overcame many ‘bumps’ along the way. I ended up graduating from high school in 1996 with a scholarship and very good grades.

I have found the greatest guy in the world, my husband. After struggling for several years with having a child we have come to the decision of sharing of home, life and love for children through foster care and adoption. I have many obstacles that I had to face in my life. I have grown into a strong person who is going to enjoy life to the fullest and give children the love and care that we all deserve. Thank you.

Sarah

I was born with Hirschsprung's disease in 1970, but it went untreated until I was 13 months old. I was born in rural southwest Virginia and this disease is so rare even today and at that time no doctor could diagnose it properly. My local doctor back in 1971 diagnosed the symptoms of vomiting and blood in the stool as a minor surgery. I ended up having to undergo emergency surgery and they used pull-through technique; half of my bowel was removed. After the surgery, I was in very critical condition and almost died. What should have been a 2 or 3 day surgery turned into a fight for life over a 3 week period. My parents never left my side – my mom didn't even go outside for 2 weeks straight! My dad could not afford a hotel so he slept in the hospital's janitor’s closet beside the boiler! They did everything they could to treat my disease. 

I am now 37 years old, and married with 2 healthy little girls. However, I have struggled all my life with this disease. Just recently I had a very bad pain for about 10 days in my left abdomen. The local doctor sent me to the ER, who performed an ultra sound, chest x-ray and took blood. All results were fine. I was given Vicodin and sent home. The next day, I was still hurting. I sought a second opinion and was given a CT scan, blood work, and a 24 hour urine test, and a small bowel x-ray which I'm still waiting for the results. 

I read literature from IFFGD and one of the symptoms of living with Hirschsprung's disease is that you could be hurting and common tests may show nothing. This has explained a lot that has happened to me over the course of my life. I have been in trouble with teachers and even my parents when I told them I was hurting and the doctors could not find anything wrong. So parents and teachers, please listen to your kids with this disease when they say they are hurting. Trust me, the pain is very real. 

I have never met anyone with Hirschsprung's disease and never even heard of anyone having it. If there is someone else out there, I would love to hear from another person that understands my pain and struggle. Thanks.

Anthony Blair Smith

I am sharing my story in response to Anthony's. I was born in 1971, but was not diagnosed with Hirschsprung's disease until I was 4 years old. I had a colostomy and the pull-through surgery. I suffered for many years with ‘accidents.’ My family was not supportive and punished me for these accidents.

I now have a very successful life, but suffer from intestinal pain and IBS. I don't go to the doctor anymore or take medicines. Whatever medicines I’ve taken either don't work me or make things worse. And rarely have I found a doctor that knows anything about Hirschsprung’s. I watch what I eat (low sugar, medium fiber diet) and drink lots of water. I am lactose intolerant and have other food allergies and always wondered if it was related to the disease. I do notice that when I get stressed, the pain and IBS flare up.

Name withheld by request

For more information related to this topic go to:

  • Hyman P. Defecation Disorders after Surgery for Hirschsprung's Disease. IFFGD Fact Sheet No. 830.

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. 

Does any one else have issues with discrimination because of your disorder? There needs to be more education as well as tolerance concerning these conditions. It could happen to anyone.

Alicia

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

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 am 53 years of age and have experienced daily/weekly bouts of constipation, watery diarrhea, GERD, etc. Our oldest daughter also has the same problems. I am finally getting some answers after all these years. I tried using local doctors in Augusta, GA, but have not been very successful. I even told doctors at a nationally-known major medical center who could not understand my symptoms. Finally, I agreed to be evaluated by their gastro department with numerous tests.

Many gastroenterologist do not check for less common GI disorders. Also, the pancreas enzymes influence bowel function and some people might benefit from a check by an endocrinologist. Many of us are initially evaluated by the gastroenterologist and told everything is fine, when we know something is wrong. You may need to be evaluated at a major medical facility. Also do some research on the Internet about doctors and their specific interests within their field of study.

– Chris

Other Disorders

Many other disorders can affect the digestive tract. Some can have symptoms that may be similar to or overlap with gastrointestinal functional or motility disorders. These will have uniquely identifying features which differentiate them from functional GI or motility disorders. However, the impact these disorders have on a person’s life will be very recognizable to those who suffer from functional and motility disorders.

I have been suffering diarrhea for as long as I remember. I am 40 years old, and when I was younger, I used to have periods of time – 3 to 4 months – without any loose stool episode. Diet control, stress control and alcohol control used to be all I needed to keep things under control. I have been living in the US for the last past 10 years and traveling all around the globe because of my job.

Around 6 years ago – after a trip to Mexico (which I really enjoyed) I got really sick – and lost around 25 lbs in 2 months. Nothing seemed to stop the watery diarrhea. It was really frustrating and didn’t know if my depressed mood was going to let me recover either. I have been suffering intermittent diarrhea since then – had 4 colonoscopies only to find everything seems perfect inside. Imodium and I have become close friends. Unfortunately it is the only thing that seems to work.

Recently my doctor found an amoeba in one of my stool samples. He recommended me to start a treatment with metronidazole (an antibiotic). It was wonderful! I couldn’t remember when I felt so well in many years! Finally, being able to go out to dinner and know I will not need to be checking the restroom all night long... or even worse, have to rush back home, or just stay home watching TV on my own. However, once I stopped the treatment, diarrhea returned. Thus my doctor suggested to repeat it again, and after that try again an anti-amoebic this time. The same effect - I felt free and happy during the treatment... only to come back to suffering, diarrhea, bloating, a few days after.

We are still trying to figure out what to do to control this situation. The good news is just knowing what I have after talking to many doctors and always getting weird looks about my symptoms - just because I do not look sick does not mean I do not have a problem! I believe there is a treatment ready for everybody - unfortunately finding the right one may take long and be exhausting. I know I am not "under control" yet but I finally saw the light at the end of my tunnel. Good luck to you all.

– Pedro

I was painfully constipated as a youth, normal in my 20’s and mysteriously prone to IBS-D in my 30’s. I have never had fecal incontinence, but rather gas incontinence and fecal urgency from time to time. I never know when for sure. It has hurt my work life and social life. My doctors don't get it.

– Name withheld by request

I'm getting near 28 years of having to sit on the sidelines because of IBS. The pain and spasms make for an extremely long workday. I am also severely stigmatized in the workplace because of some of my symptoms. I seem to always have pressure in my rectum and apparently leak gas even when I can't feel it. I think that, the longer my condition goes untreated, that it does get worse with time.

Physical therapy was recommended for my pelvic floor spasms and incomplete evacuation issues. I was diagnosed with pelvic floor dysfunction. I have been to two physical therapists who specialize in this as well as a massage therapist. I have been told by all three of them that I have a lot of restrictions due to adhesions. I feel that this must explain the tight feelings I have had throughout my abdomen and pelvis ever since this began 28 years ago. I do not know what caused it initially. My abdominal wall feels like sandpaper - not soft and flexible like it should feel. I have also had a hysterectomy, myomectomy and a couple of other surgeries which only made things feel tighter.

I don't care what anybody says about adhesions. I do believe that they can cause digestive problems even if there is not a complete obstruction. IBS is said to be a motility disorder. I do not see how anyone can honestly say that adhesions don't affect motility in the GI tract. It is no different than, say, adhesions in the shoulder ('frozen shoulder') where movement is restricted. And finding help for adhesions is next to impossible. Trust me, I've tried!

– Name withheld by request

[Editor’s note: Abdominal adhesions are known to sometimes cause intestinal symptoms. Click here for more information.]

I am a 41 year old woman who just underwent her second surgery for abdominal vovulus. When I was a child my parents rushed me to the ER due to complaints of severe abdominal pain. Nothing was found and the physicians informed my parents that it was likely due to anxiety. At 32 I went to the doctor to discuss severe pain in my abdomen that kept me up all night and caused pain so bad my limbs would go numb. She continually sent me home over the week even though my symptoms escalated to include bilious vomiting. After a week of not being able to drink or eat or sleep, I checked myself into ER. After several tests and pain mess a CT scan revealed a severe small intestine vovulus preventing any fluids from leaving my stomach. They pumped several liters from my stomach and discovered I had a malrotation and my intestines were also strangling my aorta. I can only assume that I did not require resection due to my extreme athleticism. As a young person I would be breathless after running a mile and my circulation was poor. I believe my body grew new blood vessels as forced by my activity and this is what spared me devastating consequences after a week of suffering. This time I was not so lucky. I had erythema nodosum and arthritis that preceded my reporting to ER with an obstruction. They had to remove part of my colon and ileum. The doctors claim the en was not related but since my surgery it has resolved. These symptoms are typical of bowel disorders so I don't know why it would not correlate to my obstruction. I kept requesting a GI referral and as before was ignored. So irritating! I am recovering, but it was truly my worst nightmare realized having to go through this again.

– Marcie

I was born with gastroschisis, for those of you who don't know what that is, it is a condition in newborns where the intestines are outside of the body at birth. Mine were fully outside, so they had to cut most of my bowel out. Now I have short bowel syndrome and have been dealing with it my whole life.

This has affected my life in many ways. I’ve been treated like an outcast and have been embarrassed to use public bathrooms or spend the night at peoples’ houses because of the odor of my feces. I have had several blood transfusions because of anemia and have had three bowel surgeries. I barely have any of my colon left; if they have to remove any more I will have to get a bag. I did not graduate high school because I always was sick and missed too many days and I cannot hold down a steady job. I have had depression problems because of malnutrition and been through a lot in my life because of my health. I just want to be able to see my kids grow up and be able to play with them and be a good mother to them without having to always be sick, tired and in and out of the hospital – it gets very old. Getting help in my state is very hard.

I have however managed to have two beautiful children, two and 8 months old, who are very healthy. I am just thankful I have a wonderful family and a strong mother who has stood by me all these years – if it wasn't for my Mom and my children I don’t think I would be here now. Hopefully one day I will get better. For right now I just take it one day at a time, some days are better than others. For those of you out there who have had an experience like mine just know that good things can come out of a bad situation and with advances in medical science hopefully one day they can make life better for people like me and others who have bowel problems. It does take a lot out of you and it does affect your everyday life. Please keep your head up and just live for the day. Thank you for letting me tell my story.

– Sarah

I remember when I couldn’t swallow anymore. June of 2004, I was standing at the kitchen sink and it felt like I was going to choke, eventually it went down but then meal after meal, it continued and slowly got worse. It wasn’t only foods but liquids also. I had to drink lots of water to get food to go down, and many times would have to regurgitate anyway. I would get horrible pains in the middle of my chest that would last for about 20-30 minutes at a time. I would wake up coughing in the middle of the night (and sometimes expel food I had eaten many hours before) which I had read could be stomach acid refluxing back into my esophagus.

I saw my doctor about it, and the symptoms were diagnosed as GERD. I was put on an acid reducer and thought that would take care of it. I did everything I could think of to reduce the symptoms. I lost weight, I didn’t smoke, I slept elevated, I didn’t eat several hours before bedtime, and I also cut all spicy foods from my diet. Still the symptoms persisted and I grew increasingly frustrated.

3 years after the symptoms that something was wrong with my motility onset, I went back to the doctor and was scheduled for my first endoscope in June of 2007. The endoscope revealed basically that my esophagus was “irritated” and the initial diagnosis was acid reducers the rest of my life. Frustrated again, I endured this diagnosis and did not take any pills. Why bother taking pills you can’t swallow?

In March of 2008, I had an emergency appendectomy. Whether it’s related to my other digestive troubles is uncertain, but I was put on antibiotics I couldn’t swallow and had to have chewables that made me very ill due to the type of antibiotic it was. I finally got on top of that, but my swallowing troubles continued. Every meal was a nightmare. Swallowing at times even with the water was very painful. I avoided social situations like restaurants and events on purpose. I wanted to be normal.

In January of 2010, I made a resolution that I wasn’t going to live my life like this anymore. There was something obviously wrong with my upper digestive tract and I made an appointment with a digestive disease center. After my doctor did another endoscope, he found food in my esophagus from the night before and I was diagnosed with a disease I had never heard of before: Achalasia.

Shortly after, I was given several more tests I needed to take as surgery would more than likely be imminent. I did a barium swallow and a manometry. Blood tests revealed that my blood was low on iron and B-12 as result of the Achalasia and malabsorption by my body. I was treated with 10 IV’s of iron and 10 B-12 shots over a 5 week period and will continue to be monitored once a month until my condition improves.

I now know that the pains I was having, were esophageal spasms. I know that the night-time coughing was food stuck in my esophagus. It’s not the end; it’s just the beginning for me. I am currently waiting to hear which treatment will be suggested. I am glad to know I am not the only one in the world who suffers with this. DON’T WAIT TO GET MEDICAL TREATMENT. Be aware of your body and what it’s telling you. Don’t assume that there is not a deeper problem, no matter what your diagnosis. If the course of treatment you are on is still not improving your health, advocate for yourself!

– Kate

[Editor’s note: Find information about achalasia on this IFFGD web page.]

In 2003 my husband called 911 for an ambulance to take me to the hospital with the most incredible pain I'd ever experienced. I was protesting the whole time, sure it was just gas and didn't want to be embarrassed when they told me that at the hospital. But when I began to alternate between throwing up, passing out and doubling up in pain, I let him make the call.

In the hospital I learned the pain was caused by a gallstone blocking the pancreatic duct which resulted in acute pancreatitis. Had my husband not insisted on calling 911, I'd likely have died. I spent a week in the hospital and had my gallbladder removed.

A year later, the same pain caused a return trip to the ER. How could this be? My gallbladder was gone! Well, I learned that pancreatitis (inflammation of the pancreas) can still occur, based on blood tests and enzyme levels.

Then last month a third trip to the ER and tests revealed no reason for the terrible pain. Blood tests, ultra sound, abdominal x-ray and CT all negative. No pancreatitis. The ER doctor's diagnosis was “suspected biliary duct dysfunction” and referred me to a G.I. specialist. The G.I. scheduled a MRI Cholangiogram (MRIC) to see if there was a dilation in the biliary duct or an embedded stone. I learned yesterday that the results of the MRIC were normal. No stone. Now what?

I just talked with my G.I. on the phone and she has given me the diagnosis of “Sphincter of Oddi dysfunction.”

Apparently, these spasms are something I'll just have to learn to live with, as the risks of the sphincterotomy surgery (pancreatitis, bleeding, etc.) are not worth eliminating these rare episodes. I'm to keep pain medication on hand if I feel an episode coming and if it gets too severe I'm to return to the ER where, I suppose, they'll put me on an IV with morphine while I wait it out.

I've never heard of this diagnosis before and am just now researching it. That's how I came across this website. The information here is very helpful and I'd love to hear from others who may have been diagnosed with this particular dysfunction (S.O.D.).

I'm to schedule an appointment with the G.I. for a scope, just to make sure there's no ulcer or stomach cancer that might be the culprit and I'd like to talk to my doctor at that time to present a list of questions. I just don't know where to begin. I'm reading about antispasmodic drugs and wonder if I should keep those on hand.

The pain associated with this dysfunction is worse than the natural childbirth pains I had with both of my deliveries. I'm terrified to think I might be experiencing this on a regular basis.

I so admire everyone who has posted on this site and shared your stories. The bravery you exhibit in the force of incredible pain and sickness is an inspiration. Thank you!

– Name withheld by request

I have eosinophilic esophagitis and I remember the first day I had this problem. I was at a party and was eating broccoli and it got stuck. I panicked; I tried to drink something which made it worse. I was like ok freak thing. But it happened again and again not everyday though. Then the choking at night and continuously clearing my throat. I let it go because I was dealing with another problem,, pituitary adenoma, which is under control. I finally went to a gastro doc who did an endoscopy, and he found a Schatzki ring and an abundant amount of eosinophils in my esophagus. I had never heard of this stuff. But I read the symptoms and it all fits: diarrhea, constipation, feeling so bloated and full after eating just a little bit... The only thing that really kills me is the choking at night; it feels like someone took a needle and poked me in the corner of my throat and wakes me up out of a deep sleep. I am grateful it’s not a terminal illness.

– Name withheld by request

Last modified on September 4, 2014 at 09:11:39 AM