Courageous 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 Share your Story.
Intestinal Pseudo-Obstruction
Chronic intestinal pseudo-obstruction (CIP) is a rare disorder of gastrointestinal motility where coordinated contractions (peristalsis) in the intestinal tract become altered and inefficient. The challenges of treating chronic pseudo-obstruction are often multifaceted and involve the patient and family as well as the physician. The physician may suggest a multidisciplinary approach to treatment. A management team might include the child's pediatric gastroenterologist, a pediatric pain management specialist, a behavioral specialist, and others. Find out more here.
My now 7 year old son was born at 31 weeks with Intestinal pseudo-obstruction. He had several surgeries in the first year of his life. His belly is distended at all times he has diarrhea at all times, he eats and grows well, but we are missing a support system since we have never met anyone else with this type of disorder. I would love to find someone with some info to share what to expect for the future.
– Sabine
March 10, 2009
Eosinophilic Gastrointestinal Disorders
Eosinophilic gastrointestinal disorders are a set of uncommon, chronic disorders, where part the gastrointestinal tract suffers from persistant inflammation due to higher than normal numbers of one type of white blood cells (eosinophils). The disorder can affect the stomach and small intestines (Eosinophilic gastroenteritis), the colon (Eosinophilic colitis), or the esophagus (Eosinophilic esophagitis). The disorders all present with a variety of chronic symptoms including abdominal pain, nausea, vomiting, and diarrhea. While these disorders are life altering, they can be managed once they are correctly diagnosed.
We were very excited on the birth of our son. But ever since he was born, he had difficulty with feeding. He vomited after almost every feeding. We tried a number of different formulas since I was unable to breastfeed. We knew that something was wrong, but the pediatricians just kept telling us that a little spit up was normal.
I felt like I lived at the doctor's office. When we tried a hypoallergenic formula, he threw up and immediately turned blue. After that incident, we were referred to a pediatric gastroenterologist. He did an endoscopy and the doctor assured us that it was just a really bad case of reflux and prescribed an H2 blocker, a drug to inhibit stomach acid. We were told by countless doctors that he should grow out of it.
But every feeding was awful, he would arch his back, throw up and then scream. In the beginning, he would throw up several times a day. I sat in the same chair every time I would feed him since it was easier to clean up. Then I just started to aim him at me so we could both get a quick shower and then cleaned up together. He was in so much pain. We didn't go anywhere without several changes of clothing for everyone. No one wanted to feed him, it was exhausting. He had difficulty gaining weight.
We tried a number of reflux medicines to see which one he could be able to tolerate. After several months on the medication, the doctor wanted to wean him off. After he stopped taking the medicine, he just refused to eat. He complained of stomach aches constantly. Finally, he was scoped again, and the diagnosis Eosinophilic Esophagitis was given. He was referred to an allergist for testing. It turned out that he was allergic to soy, fish, pork, beef, green beans, oats and chocolate. EVERYTHING that I was feeding him, he was allergic to. I went through the cupboards, closets and fridge and threw it all away. Even the medicines and vitamins that were supposed to help him had beef, pork and fish by-products in them (gelatin, etc). He began drinking a steroid to help his esophagus heal. It affected his behavior. We get help from a pediatric nutritionist and a compounding pharmacy.
He still complains of his stomach hurting once in a while and we'll evaluate his food intake. We're keeping a close eye on ingredient labels since they change regularly. It's difficult to explain to caretakers/teachers that his diet needs to be closely followed. Since he looks and acts like a normal little boy, it's hard to believe that he can get so sick from eating one M&M. It has been a long road, but it's our road and we are going to enjoy the ride.
We have another son, aged 19 months, who hasn't been diagnosed with eosinophilic esophagitis. But since we tested his older brother, we ended up testing him as well. We learned that he is allergic to thirteen different foods. It would just have been a matter of time before we had feeding problems with our youngest son. Managing breakfast, lunch, dinner and multiple snacks has been challenging but workable. Hopefully they will grow out of some allergies and in the meantime they are both thriving and driving me a little crazy.
– Name withheld by request
June 10, 2008[View an article about eosinophilic esophagitis (EE) from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN): Go»]
At a loss
Most physicians are not well prepared to recognize and treat functional GI disorders. Primary care physicians receive virtually no training in this area. Pediatric gastroenterologists, specialists, are generally more adept at treating injury, infection, or anatomic abnormality in the GI tract. Too few specialists are skilled in treating functional disorders. This is slowly changing as awareness of the need increases. IFFGD maintains a resource list of physicians interested in treating patients with these conditions. Contact us for information.
My 12 year old daughter has been having stomach pains for a year and a half now. At first, infrequent, but now everyday all day. She has missed so much school and activities. We have seen a GI specialist and have had many tests run. They said they couldn't find anything, it's probably IBS. We have been searching daily for help. My daughter is in so much pain after she eats and before she has a BM that she is screaming that it feels like a knife is in her and she can't live. We have had her in the emergency rooms many times and they always send us home with nothing. We've asked for medications and they say there's nothing we can give her. We even asked for a second opinion at a top rated facility and they turned us away just from a letter of explanation I wrote asking for help. They said we can't do anything for her. I'm so frustrated and my daughter is in so much pain, we don't know what to do? Thank you for this website and all who have written.
– Lisa
October 21, 2009
We have a 3.5 year old son and a 1 year old daughter. Our son was always very small, he was only 4 lbs when he was born, and although his doctor always kept an eye on his weight he contributed it to genetics. When he was about 1 year he started to drastically fall off the weight curve, and he was referred to a pediatric GI doc right away. Our son had pale, fatty, clay like stool. He had numerous blood draws done – sometimes some of his numbers would come back off but they would retest and they were fine. We did every test imaginable … every thing came back negative.
He was also having constant infections with high fevers. He was referred to ENT in which they put eartubes in and the infections slowed eventually stopping, he started making his own curve on the weight chart, he was still below the 1st percentile but he was holding his own. He was released from GI and has been a healthy kid. At this point I was 9 months pregnant with my daughter. Both the GI doc and our pediatrician believed our son’s disorders would not be relevant in our daughter.
She was born healthy, almost 7 lbs and we were sent home. The next day we ended up in the Children’s Hospital by ambulance and she stayed there for a week with hypoxia (she couldn’t keep her oxygen level up on her own) – no diagnosis found. At 4 months she was rushed to neurosurgery because they believed she had hydrocephalus – her head was almost the size of mine – she had an MRI but this was also negative. After a year of tests for her in neurosurgery, pulmonary, neurology, ophthalmology, and genetics, everything was negative. At this point her body caught up with her head and she has become much happier, so we were okay letting her be released and if new symptoms showed up we would bring her back in. Recently our son, who is now 3, has had a major loss of his appetite. When he does eat, he doesn’t like fatty foods (he would prefer veggies over French fries, what kid doesn’t like French fries and cake?). Our daughter also started getting pale fatty stools. We took our son to the doctor yesterday unsure of whether it was really necessary to go back through all of that again. We were sure his weight would be okay, just three weeks ago he was 28lbs and in the 5th percentile (great results for him). At the pediatrician they found he was 25lbs (lost 3lbs in 3 weeks) and had dropped back off the weight chart. Our pediatrician is truly baffled and sincere that the kids need to go back through all the testing. He was given a referral back to GI and genetics as well. Not gaining weight and holding his own is one thing, losing weight when he is so small to begin with is a whole other thing and definitely not okay with us. Our daughter who has the same weird undiagnosed stool problem will eat anything you put in front and is a 24lb 1 year old. They both have completely different symptoms for right now.
We are praying the kids don’t have to go through too much this time and that we can get things figured out. If anyone else has experienced anything similar it would be great to share stories and maybe you have found a diagnosis.
I would also like to say our doctors have been great. I believe they have tried everything they know possible, there have been many time with both kids we started with one doctor in the room and ended with there whole team. We have been told multiple times that it is one of the weirdest things they have ever seen since the kids other wise seem healthy, happy and meeting all of their milestones. Hopefully for the kids sake and our own sanity we can find answers and move on with our lives.
– Name withheld by request
July 8, 2009
I have a 21 month old child. He was a normal baby until he turned 15 months. He got sick, and the doctor told me he had a stomach virus, and that it could take up to 2 weeks before he was better. I waited but he started having bloody diarrhea, so the doctor sent me to the hospital where he got IV fluids and was tested for parasites and rotavirus, both came back negative. We were sent home, but he continued to be sick so I took him back to the hospital and finally he was admitted and after 5 days diagnosed with gastritis. We were sent home yet again but he continued to have diarrhea and high fevers. After 20 days with diarrhea I took him to a different hospital where he was admitted and he was tested for many diseases including celiac disease, cystic fibrosis, HIV, lactose intolerance, and food allergies. Everything came back negative.
It’s been 6 months and he still has diarrhea, high fevers, failure to thrive, weight loss and skin rashes. Last time he was at the hospital he was there for 22 days, all test were repeated as well as CT-scan, endoscopy, colonoscopy, upper GI series... we still have no diagnosis and he still is sick. I wonder if he will ever get better. I spend my nights researching but have been unable to find an answer. Hopefully someone will read this and offer me ideas on what can I do or where to take my child.
– Nora
March 18, 2009
Our daughter Cecelia began showing signs of bowel problems before the age of 6 months. Her stomach would become so distended. We used enemas, and stimulation to help her pass a BM. Her BM's were a strange consistency, very granular and gritty like sand, or they would run out of her like a gush of fluid that a diaper had no hopes of holding. I scrubbed carpets and cleaned clothing on a daily basis.
At her 9 month check up she had lost 1 pound and was suffering from terrible rashes/burns on her bottom from these strange BM's. Her stomach was still distended and she was still having problems passing a BM. Our pediatrician was very quick to send us to a local pediatric GI specialist. The specialist worked with us until she turned 3 years old. During those long months Cecelia continued to have the same sort of BM's, the same rashes/burns, stomach staying distended, and she continued to lose weight. We tried formula instead of breast milk, different kinds of formula, aluminum hydroxide, magnesium hydroxide, mineral oil, and continued with the enemas and stimulations. The pediatric specialist finally told us that he had no more advice or ideas and sent us to a motility specialist out of state.
Once we began seeing the motility expert we realized that this was more than just a case of constipation. Cecelia had already been tested for celiac and Hirschsprung’s disease and tested negative. We had to be in the hospital for 2 days prior to more testing to clean her colon out. She had 4 liters of polyethylene glycol pumped into her through an NG tube to begin moving the bowel. She had a colonoscopy done which was only 2/3 successful because of the many folds and bags her intestine had due to being stretched out of shape. The scope showed no signs of other problems though. She had a colon manometry test done and it showed that she had strong contractions. Other than her colon being very wide in diameter and having many folds and bags there were no other symptoms.
At this point in time we had to make some choices. Living like this was not going to be one of them. Not only was she losing weight, her appetite was non-existent even while taking a stimulant. She obviously had a very low energy level and was very pale. She was also losing her hair which we attributed to lack of nutrients.
We were given three other choices. First, completely remove the colon, not recommended and too extreme for a first step. Second, remove the part of the colon that is the most out of shape and see if the remaining colon would function better; also not recommended and still too extreme for a first step. We chose the third option, a caecostomy. In this procedure they attached the cecum to the inner abdominal wall and created a hole from the outer abdominal wall to the cecum. In this hole is a plastic coiled tube with a trap door, called a Chait trap door, at one end. The trap door stays on the outside of the abdominal wall. Every night we open this trap door and attach a feeding tube and syringe. Into the syringe we pour saline solution with glycerine and let gravity do the work. This takes about 40 minutes. When that is finished Cecelia then sits on the toilet for about 45 minutes to allow her colon to empty. This is a long process, but she has had no more uncontrollable BM's. We have had to change the liquid to polyethylene glycolbecause we are still not getting the results that we need. We are still experimenting to make life easier for Cecelia and are sure that we will eventually find the right fluid, the right amount of fluid and the right time of day to make a better success. We have learned to cover the trap door with a pediatric eye patch so that the clothing does not catch on it and rip or pull on the hole.
We are still working on weight gain and hair loss. She had a barium swallow test done which showed us that she has weak jaw muscles and swallows 3-4 times per bite which might be a cause for the lack of eating. We are beginning therapy for that now.
Cecelia is much happier with the caecostomy although she is not ‘normal’. One issue we are having to revisit is the potty training. She has no issues during the day, but she consistently has a wet diaper every night now. She was wearing panties at night prior to the procedure. I am hoping to get some insight on that.
We hope to talk to others who are having the same issues. Without a diagnosis, we certainly have a hard time getting people to understand.
– Cheryl
September 1, 2008
My 10 year old son was diagnosed with encopresis when he was around 2-3 yrs. old. He was kicked out of day care because they couldn't, and my husband and I couldn't, get him potty trained. His pediatrician then referred him to a pediatric gastroenterologist and a therapist. Around age 5 he was diagnosed with ADHD, oppositional defiant disorder and at the beginning of this year he was diagnosed with Bipolar (NOS).
Over the course of his life he has not been able to stay in underwear and now for the past year has only worn pullups/Depends. Last year his stomach became very distended and he started suffering from abdominal pain and vomiting. Then began our road to hospital stays for GI cleanouts. He has been in for a clean-out a total of 7 times. He's had tests for Hirschsprung's and celiac disease and both conditions have been ruled out. Next month he will undergo a colonic manometry to test the muscles of his entire colon. His doctor has said that he believes even if my son would start doing regular sits that his colon is too stretched out to go back to normal. He said eventually he may have to just remove the entire colon (colectomy) and my son will have to have the bag for his feces. I’m looking for advice or suggestions on this.
– Tabitha
December 21, 2007Commentary: Encopresis (or fecal soiling) is usually associated with constipation. Functional constipation is the most common problem presenting at pediatric GI clinic. When a child presents with this problem at age 2 or 3 years, it is most likely after an episode of painful defecation. It hurt and now he is trying to avoid it hurting again. The infant and toddler with painful defecation tightens the anal sphincter because of fear. The treatment for an infant or toddler with painful defecation is to assure painless defecation, usually with oral polyethylene glycol. Over time, possibly many months, the child learns that there will be no more pain, and that bowel movement feels good.
Many primary care clinicians are not sure about constipation in children. Often they prescribe enemas or suppositories. Unfortunately, enemas and suppositories frighten many children, and anal invasions often fail because the child tenses the pelvic floor even more. Trips to the emergency room for retentive crises, when the child is in extreme pain from an impaction, are most often treated with repeated enemas. Thus, control of the pelvic floor is wrestled away from the child in favor of the doctor. The concept of a diseased child is reinforced because there is a perceived requirement for medical interventions. The child does not achieve mastery in toilet learning when others take control of defecation away from him.
Children with any kind of learning problem have more difficulty with toilet training compared to other children. In children with attention deficit hyperactivity disorder (ADHD) and functional constipation it takes longer than average to resolve functional constipation.
It is reassuring to both the child and the family when their clinician explains that functional constipation is not dangerous, that it goes away when treated correctly, and that the parents have brought their child to the right place where he can now get well. Conversely, when clinicians who are unsure order multiple medical tests to rule out diseases, and all the tests come back negative, parents may worry that something awful is being missed. Some clinicians may hint that the problem is because the child has a mental health disorder. As the parents’ anxiety, frustration, and uncertainty grow, they may punish the child for soiling rather than praising when he does not soil. Punishment for a problem that the child cannot control contributes to oppositional, defiant behavior.
Children who have functional disorders and co-existing psychologic disorders fall into a gap between medicine and mental health. Medical doctors are uncomfortable dealing with the mental health features of the person, and mental health professionals are unsure of how to deal with medical symptoms. Only a few working clinicians are willing to accept the challenge of modifying their usual evaluation and treatment to facilitate a therapeutic alliance with a patient who presents these multiple difficulties. At the established medical centers that specialize in functional or motility disorders of the intestinal tract are usually clinicians willing to listen and understand the most difficult problems – those that fall into the gap.
Colon manometry has been called “the convincer” because in children with functional constipation we stimulate the colon to induce high amplitude propagating contractions (HAPCs); these contractions are the marker for neuromuscular health of the colon. Their beautiful coordination and tall peaks provide convincing evidence that the colon works. Also, when the HAPCs appear, the child recognizes the defecatory urge and either squirms in pain, denying any urge, or requests the commode. Often, the child tries to ignore the first HAPC, but with a clinician’s calm urging, the child watches the computer screen and correlates his visceral sensations with the HAPCs on the screen. Then the child agrees to sit on the bedside commode, and defecates successfully and repeatedly. The clinician praises the child’s behavior, noting the child’s abilities to recognize the urge and respond appropriately. The clinician states that the child has no disease. This statement enables the child to shed all the accumulated old, vague explanations in favor of a clear explanation that he is a well boy. While this is a relief to parents, they may also feel skeptical at first.
Does prolonged functional constipation ever result in a colon that cannot contract? Over years without effective treatment, muscle and nerve may be replaced by fibrous tissue. The colon may then become an inert conduit. Liquids may pass, but solids get stuck. In my experience, the colon does not reach this ineffectual stage until a child is around 15 years old. At 15, if the colon has no contractions as shown by colon manometry, and if the adolescent is enthusiastic about relearning how to defecate, I would probably recommend subtotal colectomy and ileoproctostomy (removal of much of the colon and reattachment of the ileum to the rectum). In a patient who has ADHD and oppositional defiant disorder, I would collaborate with a mental health professional before recommending a single stage operation. It might be a confidence builder for the child to do several sessions of anorectal biofeedback with a knowledgeable therapist, if the child is cooperative, to teach the child how to use the pelvic floor before completing the surgical procedures. However, it is my expectation that a 10 year old child will not require a colectomy.
Individual and family therapy are often helpful and may be necessary to treatment. Emotions can run high. Oppositional defiant disorder results from bad feelings between child and parents. Behavior therapy can help parents and children make better choices, and find better words.
Most health care systems stress efficiency and excellence in order to help the most people with the most common conditions. But children who fall into the gap are complex, and it is not uncommon for them to suffer needlessly when they are enrolled in these systems. Primary care clinicians need to know more about the functional gastrointestinal disorders. The child and family need healthcare providers who are experienced and understanding of how to treat these conditions and who are willing to care for the patients who fall into the gap.
– Paul E. Hyman, MD
Professor of Pediatrics, Louisiana State University,
Chief, Pediatric Gastroenterology,
Children's Hospital at New Orleans, LAFind our more about encopresis here. Go »
Doctor-Patient-Family Relationship
An effective doctor-patient/family relationship is an important part of managing any functional or motility GI disorder effectively over time. That means everyone working together for the good of the patient. Your doctor should listen and pay attention to what you say; invite questions; and offer explanations that you can understand.
My daughter has been diagnosed with GERD; she is 17 months old. I knew something was wrong and could not get a doctor to listen. I was told over and over it was a cold. I took her to the pediatrician so much they actually started to get annoyed and were becoming rude. After switching pediatricians we now know what is wrong and are getting a new plan for her in place. She already is better – it is so amazing. She sleeps at night now, does not cough like she used to, and seems to enjoy meal times again. I would tell anybody to keep pushing. I brought my daughter in once a week until someone listened. Find the right doctor, they are out there.
– Ann Marie
January 16, 2008
Irritable bowel syndrome (IBS)
The occurrence of IBS in kids and teens appears to be around 15%. Kids and teens who suffer from functional GI disorders are especially vulnerable. The school years are filled with stressors, social activities, and life changes. Support is needed from families and physicians to help these young sufferers. IBS may involve a seemingly endless search for answers. It takes time, thought, and courage to keep sorting out and searching for ways to best manage the condition.
My daughter will be 9 yrs. old in August and she was diagnosed with IBS about a year ago. I live in a small, rural community in Alabama. Our pediatrician sent us to Birmingham to see a gastrointestinal specialist. We were living a nightmare watching our daughter suffer from this disorder that I still know little about. She would wake up early in the morning sick to her stomach, slumped over with abdominal pain and vomiting on average 2 to 3 days a week! As a mother, I felt very helpless and began to wonder what brought this on all of a sudden.
After seeing the specialist in Birmingham, we learned what food she could tolerate and what she couldn't. We have changed her eating habits... which in itself, was a hard task. That has seemed to help. I wish the school would be more understanding. Sometimes she has to go to the restroom suddenly, sometimes she’s fine and then cramps suddenly, and they don't seem to understand. Her symptoms have improved but are not completely better. The lunchroom manager at her school gets offended because I no longer let her eat school lunch. She seems to have less problems when I prepare her food at home. I want to be able to help my daughter but without hurting others in the process.
I feel foolish as a parent because even though her symptoms are not as bad... I feel like I don't know enough about IBS, why she developed it, and will she ever get completely better. Our doctors here don't seem to know too much about it. There's always that what-if question. What if her symptoms persist or get worse like before? What do we do then?
[Editor’s note: View useful information in this article about helping a child with a painful bowel disorder in going to school, using the bathrooms, and interacting with teachers and classmates. Go »
– Name withheld by request
July 20, 2009
I was 10 years old when I was diagnosed with IBS. When I first started experiencing the pain, I thought maybe it was the flu. But it got worse, so I went to the doctor. I was subjected to many tests, and I lost a ton of weight. I kept wondering, why me, what did I do wrong? But, now I'm 14 and still living with it, and right now I have no regrets about my life, and although I have it, it dosen't stop me from doing anything.
– Name witheld
May 2, 2008
I was diagnosed with IBS in 2005. As a teen still working my way through High School, it’s very difficult to explain to my friends, teachers and others about the disease. I tend to go to the bathroom quite frequently and I sometimes encounter such severe stomach pains that I can't make it through during class. Many teachers have thought that I ask to use the bathroom so I can "skip" out on class (even though I would never do such a thing). Sometimes the stomach aches are so bad that I start crying, but I try to hold the tears back so I can make it through the class period, it never seems to work though. My Health Care teacher actually kicked me out of class because of stomach aching.
If I don't have something in my stomach for my stomach to feed on, it feels like my organs are trying to feed off themselves. The pain is so unbearable it’s hard for people to understand what I mean. I've had so many complications with my stomach, friends, teachers, and doctors; I could make an inspiring movie out of six years of complications. No one will understand how I feel, except anyone else who is going through what I am going through.
– Name withheld
November 26, 2007
I am 15 and I have had problems all my life with my stomach but recently it has been getting worse. I have been through scopes and tests and everything and they have decided it is IBS. It is very painful and hard for me to understand and I feel so alone like nobody understand the pain. All they can say is how does it feel, but I don’t know how to describe it. I have missed so much school I’m afraid it’s put my future in jeopardy.
So for anybody especially teenagers who go through this just try to believe you’re not alone and I'm thinking about you even if you don’t know me....may god bless you.
– Name withheld
November 23, 2007
I was very gratified to listen to the Dr. Lynn Walker video regarding the problems children with IBS face in the school setting. I have a fourteen year old daughter who has GERD and IBS. Bathroom issues are something we have struggled with since she was very little. The anxiety an IBS child faces when having to use the bathroom in school is difficult for parents to understand. But Dr. Walker expresses well these difficulties.
As far as dealing with a child who faces chronic pain as with GERD and IBS, I believe it is important to help the child understand that they must learn to live with these problems as best as possible. Focusing the child's attention on someone or something in the community other than themselves - helping others - can also help these children. My daughter sought to help other kids by creating a cookbook for kids with GERD and IBS.. This may help kids understand that they are not isolated in their problems.
– Name withheld
November 12, 2007
I'm 16 years old but I've had symptoms of IBS for at least 4 years. Whenever I'm nervous about something, I get the 'nervous' pains and then the diarrhea. Then, I get even more anxious because I don't know if it will get better or if I'll be in the bathroom for another 3 hours. At this point, I've stopped eating full meals and snack throughout the day to try and make it through the school day. I always carry an anti-diarrheal with me just in case, but it doesn't always work.
I began going to a gastroenterologist and he diagnosed it as IBS and I tried herbal remedy which worked, but later completely became ineffective and other medications didn't work, too. I recently had a colonoscopy (nothing was wrong) and I was prescribed a very intense medication that I'm extremely apprehensive about using because it can cause major bowel problems if constipation occurs. I'm at a loss of what to do though. My life has stopped, working is a constant stress and it's hard to explain to friends...especially since it's so embarrassing! It's a huge relief to know I'm not the only one though...thanks to everyone who shared their stories. I don't feel so alone and isolated with this disorder.
– Name withheld
October 27, 2007
Living with IBS is very hard for me. Right now I am only 12 years old and I have had IBS since I was 10. Sometimes I go over to my friends' houses and my stomach starts cramping up and I get diarrhea. It ruins all my fun! Last year, when I'd already been having IBS for about a year, at school I'd have episodes randomly during classes and I started crying very hard. I had no clue what was wrong with me! My mom took me to GI doctor and I told him all the symptoms I'd been having. The doctor understood everything so I didn't have to take a scope. I had some blood drawn, the doctor diagnosed me, and since then I have been taking medicine, which works for me. I have also limited my diet, and although I still can't eat out at restaurants very much anymore, the number of episodes I have in a week has decreased. Thanks for your support!
– Name withheld
September 22, 2007
I was 12 when I used to feel horrible pains but never thought it would affect other areas of my body. I always kept it to myself thinking the pain will go away. One day I went to my mom and told her about the pains and she said to me it’s nothing serious, but she didn't really know. Now at the age of 17 I told my mom these pains never went. So I decided to go to the doctor because I was constipated, my stomach was swollen, and it really changed the way I look. The doctor told me that I have IBS and that’s when I found out what those horrible pains were. I started a healthy diet which didn't really help me that much but I hope it will if I carry on with it.
To all the people that have IBS I feel their pain and know what they are going through. All I can say is have hope like I do and trust that everything is going to be alright.
– Name withheld
September 19, 2007
I was recently diagnosed with IBS and I am only 15. I am on medications to control it and have not been shy about my IBS with people close to me. However, even though I can control it sometimes, there are other times I can't. I guess I've learned to accept it and to not let it rule my life. After all, we only have one of them, right?
– Name withheld
August 30, 2007
I am 17 years old, and I have had IBS for two years. It didn't get very bad until recently, when I missed the last two weeks of school due to frequent bowel movements and lack of energy. I've been trying to deal with it for quite some time now, and it just keeps getting harder and harder. I can't travel, I can't work, I can't play soccer anymore, as all of those things trigger an attack and I confine myself to the bathroom. I'm still trying different medications waiting for the right one that will lesson the symptoms of IBS.
– Name withheld
July 2, 2007
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 is described in these courageous stories, the interventions or amount of suffering experienced does not correlate with getting along in life.
I am 33 years old and I have lived with Hirschsprung's disease all my life. I have suffered for years having to wear pads. I had several surgeries as a baby and the doctor cut through my muscle, which has caused me to have no control over my bowels. I was teased, humiliated, isolated and confused growing up. My childhood is a blur and most of my memories are those of being hurt/teased by others. I have a lot of trust issues and question "why me" plenty of times. I am in a relationship, but it has been difficult due to intimacy concerns.
I recently went to see my doctor about possibly getting surgery because having a relationship is very difficult....being intimate is always an issue, a plan, a big deal. I am scared to have children because I have read they have a 50% chance of inheriting the disease from me and they will also be at risk of having other complications such as Down Syndrome.
My doctor referred me to a physical therapist where I was given exercises to increase control of muscles in my rectum. I have just started this journey and it has given me a little bit of hope. It took me a couple of cancellations before I even agreed to show up...too embarrassed and too worried that it would be all for nothing. The PT did tell me that if I do have children I will have to be monitored and I will also have to give birth via c-section (made me a little sad). I would love to feel "normal" (I have imagined what normal is all my life), be able to go just one day without having to wear a pad and not worry about what I eat or going out to dine....I have tons of stories about not making it to the bathroom in time.
Through all of my years in living with this disease I have become a strong individual that works hard, does nice things for others and is always compassionate...so I guess some good has come from it all. I would love answers, but the research shows that not a whole lot is known. I can't find anything about having children (risk factors) other than the advice to get genetic testing. I am getting older and it would just be nice to be "free". Maybe one day...
– Katrina
January 23, 2010
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
July 21, 2009
I was born with Hirschsprung's disease in 1954. I was sent to the Children's Hospital in Pittsburgh when I was 2 days old for my first operation. During the next 12 years I had 26 other operations, including an ileostomy and urostomy.
Eventually the ileostomy and urostomy were reversed and a pull-through was done. I have always had a large amount of gas, loose stool, and intestinal pain. About three years ago a doctor prescribed an antispasmodic drug (hyoscyamine) which I take before each meal.
The hyoscyamine has virtually eliminated the pain has also reduce the amount of loose stool. It has improved the way I feel 100%. I hope this may help someone else who is suffering from similar problems.
– Name withheld by request
July 8, 2009
I'm writing this on behalf of my 15 year old son, DJ, who was diagnosed at birth with Hirschsprung's. He had 3 surgeries before he was 3 months old to correct the problem. He had a megacolon, so he had to have a colostomy so the intestine could go back to its normal state, then had the pull through procedure followed by having the colostomy reversed. He also had an obstruction corrected when he was 7 years old. I have to say that we were very lucky. We live in the Harrisburg Pennsylvania area and there is a Pediatric Surgeon that specializes in treating Hirschsprung's. He diagnosed him within 1 week of being born and was the only doctor who believed that he didn't have Cystic Fibrosis.
He's been living with pain for as long as he can remember. Last year, he was doubled over with abdominal pain and we took him to the ER. This is about the 7th time we went to the ER because of pain, and he was just sent home with pain meds and told he was constipated. On a scale from 1 to 10, the pain was a 10. He has discomfort everyday, some worse then others. He found that when he takes Miralax regularly, he does feel better. But it's hard to manage because he needs to be sure to time taking it after school so it works before he goes to bed.
He can't have any dairy products, which is also challenging. Often he can't have what's being served at school for lunch.
I have to say that he excellent coping skills and is very active in sports. He's a freshman and is playing both basketball and soccer at the high school level. He rarely misses school or any of his scheduled activities. You would never know what he's had to deal with unless you were told. He a very bright and strong young man that has made his father and me very proud.
– Name withheld by request
April 6, 2009
Here is my personal story of what happened when I found out Trey had Hirschsprung’s disease.
My son was diagnosed 7 years ago with a rare disease. After his birth, he wouldn't eat or stool. No one knew what was going on but the doctors knew it was serious. I was frantic, the day I was supposed to take my son home from the hospital, the hospital had other plans.
They shipped my 2 day old son from one hospital to another by ambulance. My son was put on IV support, and tests were drawn for Cystic Fibrosis. The test results would take 2 weeks for the final result. It was a waiting game.
In the meantime my son still wouldn't eat or stool. He was a normal birth of average weight. He looked healthy, what was wrong with my son? No one had an answer.
Enemas finally worked, and time was getting close for the results, but not fast enough, my son was showing signs of distress. I was at the hospital every day, I wouldn't even take off my hospital band from when I gave birth. I would not take it off till he was home safe and healthy. I had two close friends that also were pregnant the same time I was, they gave birth to their babies and were able to take them home. Why can't I take my son home? What is wrong with my son?
Then I tried to find my son’s diagnosis on my own, I couldn’t wait for the results anymore. I started looking through medical references. Then I was thinking back to his birth and his signs and symptoms, my mother told me something strange that she'd forgot to mention at the time of his birth. She was in the birthing room with me, and when he was delivered she noticed green mucous over his head and face. She thought to herself that's not normal. What was it? He also was vomiting green bile right before we thought we were to be discharged.
I was getting my son ready to go home, dressed the baby and was ready to be discharged, when my mother spoke up to the doctor, that he hadn't messed or eaten in the past two days. I wanted my mother to shush, there is nothing wrong with my son I thought to myself, but the doctor looked puzzled and that's when they took my son, and transported him to another hospital. I just wanted to take my baby home. There can't be anything wrong, I thought he looks fine to me.
Almost two weeks later, still no results. I was doing laundry at home when I received the phone call from the doctor, to get to the hospital right away, my son was going to surgery and I had to sign papers. I was frantic.
I got to the hospital, the test for cystic fibrosis still wasn't back, but they had done x-rays on his stomach and found severe distension, and if they didn't relieve the pressure he could die. But, what is wrong with my son, still no one had an answer?
I paced the hallway waiting with friends and family, waiting for results, waiting for an answer. Worried about the surgery. Finally, I was in the NICU waiting room, just fell asleep when the doctor came and tapped me on the shoulder. It's Hirschsprung’s disease. It is a rare disease, that only 1 in 5,000 babies are born with. The disease attacked all of the large intestine and 6 inches of the small intestine. He now has an ileostomy to relieve himself.
I questioned myself. What did I do to cause this? I painted my fingernails, I worked as a cashier, I ate some fast food. What did I do to my baby. But, the doctor assured me I did nothing wrong. It is just one of those rare diseases, that they themselves don't know what causes it, or cures it.
It has been 7 years and 8 surgeries later, and my son is somewhat normal after all of this. He still wears an ostomy bag. I'm still waiting for the cure, and want to get the word out about Hirschsprung’s awareness. No one should go through what I did. People should be aware of this disease.
Thank you for your time and letting me share our story.
– Corin Parker
March 5, 2009
My story starts the day I was born... May 23, 1989. I was born in the state of Michigan and I was supposed to be a healthy baby but when I was born the doctors discovered something was wrong: I had Hirschsprung's disease. My biological parents could not take care of me, even though they wanted to, so they gave me up for adoption, and recently I have re-established contact.
The first twelve years of my childhood, were hard: seven major surgeries, I now have only three feet of functioning bowel, the rest was removed along with my colon and my appendix. I had an Ileostomy for quite sometime, until the doctors did a pull through surgery which gave me a complete functioning digestive tract. It’s quite amusing actually, my friends all say I am a human garbage disposal, because everything that I eat will digest in half an hour. When I was six years old I was put on a feeding tube and I had the tube for six years. A lot has happened to me physically, but the main thing that got me through was my faith. Today I am a healthy 19 year old with no side problems from the Hirschsprung's.
– Joel McGarvey
February 4, 2009
My son was born with Hirschsprung's Disease.... The first signs of this rare disorder is a baby that does not have a bowel movement within 24-48 hours… which Dylan didn’t. He was taken to another hospital who could provide better care and do test to rule out Hirschsprung's. Dylan’s bowel backed up so terribly by 5 days old without having a bowel movement after several attempts of enemas that his bowels perforated (tore apart) he was extremely sick and rushed straight to emergency surgery to perform a colostomy. He was given time to heal over a few months and the doctors continued doing biopsies to see if there were any nerves in the intestinal tissue... after several of these and having had his colostomy for 6 months we got the diagnosis of Hirschsprung’s and soon after he had his colostomy reversed and his good intestines put back together so he could have bowel movements out of his bottom like a normal kid. But the problems didn’t end there... scar tissue developed and he had a partial obstruction because stool couldn’t pass through... after several dilations and a hospital stay due to infection 2 years later he is finally doing well.
This disease is so rare that if Dylan would not have been sent to another hospital with better (well knowledgeable) doctors that new about Hirschsprung’s I really don’t think Dylan would be with me today! I have found a wonderful support group where myself and other parents of HD kids share stories, advice, tips and information... there are others out there with this disease and we are trying to spread the word. Its awful that a lot of us have to go out of town to other hospitals and doctors just to get our children help. We were making 3 hours drives 3 and 4 days a week when Dylan needed anal dilations.... his doctor here caused him to get sicker with an infection because I kept telling them something wasn’t right and he was showing signs of infection or enterocolitis - which HD kids can get very easily and can been fatal if not taking care of - and they wouldn’t listen to me and told me he just had a stomach bug... so needless to say I made the 3 hour drive to get him to his pediatric surgeon whom I had so much faith in because he took such great care of Dylan after he was born.
Ok this is turning into a novel...just wanted to share Dylan’s story and help educate anyone who will read this a little about Hirschsprung’s.... awareness can make all the difference for a child out there that may be undiagnosed and having horrible constipation problems.... ‘research anything and everything’ is the only thing I can say to anyone who is having bowel problems.
– Catrina Johnson, Mom to Dylan
April 11, 2008
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 all the sophisticated equipment in the world will 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 about it from another person that understands my pain and struggle. Thanks.
– Anthony Blair Smith
May 30, 2007For more information related to this topic go to:
- Hyman P. Defecation Disorders after Surgery for Hirschsprung's Disease. IFFGD Fact Sheet No. 830; 2005.
Secondary Causes
Sometimes one bowel condition can lead to another. Malrotation is a congenital condition where the developing fetus’s bowel does not attach properly to the abdominal wall. This can allow the bowel to shift or even twist on itself – when the bowel twists so much that it obstructs the bowel, it is a condition called volvulus. Bowel obstruction can lead to an infection. Severe bowel infections are a risk factor for post-infectious IBS.
Our daughter had surgery in 2007 to repair multiple abnormal twists from malrotation of her intestines. She suffered from birth to age 3 with severe stomach pain, bloating, irregular bowels, vomiting that became so bad by the time she was 3 she was vomiting thick green bile. It was intermittent and throughout her first three years we were told she was suffering from rotavirus, stomach virus, etc. As our first child we did not know what to compare this to. As we were waiting for the appointment with the gastroenterologist, after almost 5 months, she had her worst episode and lost 5LB in two days. I begged for an emergency visit with the gastroenterologist and low and behold the radiologist found the intestinal malrotation. Her cecum was in her upper right quadrant. She had surgery within a week and her symptoms subsided. She was 19 LB at age 3 when we left the hospital. She is now 5 years old, 42 LB and doing well. We have since found out she also has Celiac Disease and are adjusting her to a life long gluten free diet. We have also learned she has Cerebral Palsy which answers many questions about her developmental delay, motor planning skills, and speech skills. She is a lovely little girl excited about kindergarten and her friends. It has been a very traumatic experience but we are learning to move forward with strength. My advice to any parent with a child who experiences digestive symptoms is not to second guess your intuition and seek answers until you feel satisfied with them. You are your child's best advocate!
– Leah
May 15, 2009
I had severe stomach pains all my life and threw up most things I ate. I went to doctors and had tests but all they told me was I was anorexic, bulimic, allergic to food or I was making it up for attention. I went 10 years with this and I wasn't allowed to eat chocolate and sweets.
When I was 10 years old I got extremely sick, they took out my appendix and I didn't get better and started having convulsions. They thought I would die that night. Finally, they found that I had a plus 90 degree malrotation of the bowel, which had popped and released poison into my body. Apparently all my life my bowel would twist and untwist in a matter of seconds but the pain could last weeks. They fixed it and since then I have been in and out of hospital staying for a week or two.
I was in hospital nearly a week ago and was diagnosed with IBS. I wasn't to upset at first but then I realized I needed to take the laxatives for most of my life. I feel sick every day and I can't even get through a meal sometimes without having to run to the toilet. If my surgeon had messed up in my surgery, there is also a good possibility I have adhesions in my bowel.
People suffering from IBS or any other bowel disorder, I know your pain and my heart bleeds for you, it truly is horrible, so remember things can only get better. And everything happens for a reason whether it be good or bad, and it will all work itself out in the end. I am only 14 and have 11 scars and still enjoy and live life to its fullest. My friends sometimes tease me and say I’m a slacker for not going to school for weeks at a time, but they have no idea the pain I suffer.
– Name withheld by request
September 30, 2007For more information related to this topic go to:
Click here for more information on volvulus.
Visit our Learning Center for publications on post-infectious IBS.
Watch a video interview on the mechanisms underlying post-infectious IBS in our Video Corner.
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 those who sufferer from a functional GI disorder.
It was a Monday, and I felt uncomfortable in class. Tuesday rolled around and I was too sick to attend school. A visit to the doctors only resulted in "a virus" so I was told to stay home until I felt better. Too bad I didn’t feel better! As my absences started piling up, I tried to go back to school. but I wasn’t able. Two weeks and 3 doctors appointments later I was diagnosed with GERD. I am 16, and I was told to make lifestyle changes such as cutting out dairy, greasy foods, spicy foods, chocolate, soda, and any citrus foods. Do you know how hard this is? I don’t think people are aware how crazy this is, unless you have to deal with it. I will forever have to deal with this, and I don’t even know how I will. I can't imagine my life without chocolate.
– Name withheld by request
February 10, 2010[Editor’s note: Some foods worsen reflux. But everyone is a bit different in how they respond to food. Cutting back on a food (eating just a little) may help just as much as cutting it out and eating none. Talk it over with your doctor.]
My son never toilet trained by the normal age. I noticed that when he was naked, he would dribble frequently. His stool was strange consistencies, sometimes a heap of nuggets, sometimes a golf ball, sometimes just tarry stuff. I also noticed that he has gross motor coordination but just with his core muscles and his legs. He was flat-footed too with his toenails curling under. His feet and legs would get 'fuzzy' like pins and needles, falling asleep and painful. Strangely, he never wet his bed. After having years of toileting and psychotherapy that were unsuccessful, and being told by specialists at one major medical center (urology and GI pediatric doctors) that the problem was psychological, I finally took him to a Children's Hospital where the APA guidelines of diagnosing encopresis & incontinence were followed. It turned out that he had a tethered spinal cord. [A neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column.] Also, his bladder had enlarged to twice the normal size for his age and weight, and was functioning solely on gravity. He was entirely constipated, so full that his lungs and heart were being compressed. One week after the hour-long surgery to release the tethered spinal cord, he was fully continent. His feet have stopped fuzzing. He is not on any GI medicines. He has superb core strength and his toenails grow straight (there is a line on them from a year ago, you can see the pre- and post- surgery growth patterns that are remarkably different). Best of all, the therapy that he had for Developmental Delay and his social deficits have all disappeared.
We have just returned from the play ground where you could not tell the difference between him and any other healthy child. Sadly, his younger sister is 4 1/2 and bowel incontinent. She is going through a Pains and Incontinence program (that is so far not working very well for her bowels, but seems to be helping with her bladder). She has been hospitalized for a severe sudden onset bladder infection. Her MRI did not show a tethered spinal cord but there may be nerve involvement similar to her brother's. It is so difficult to take your children out into the normal world and keep a stiff upper lip when the back of their diaper overflows, and they are 4 1/2 and bright, social and energetic...people look at you as a parent and think what is wrong with you that your child is still in diapers and smells bad. I try to point out her brother as an example of why that sort of thinking is misguided.
I am more secure in my parenting but hopefully my daughter will get a diagnosis and good treatment like my son did. I have an older child with a different father who is 18 who never had a problem and toilet trained in one day when he was 2. I think my childrens’ problems are genetic. It makes me sad. Some days are tough, when my entire world seems to be an endless stream of poo and my hands are raw from constant washing. She cannot go to preschool or day care because the staff even when they are advised of the circumstances and agree to a plan in theory, invariably lose patience and try to apply 'gentle discipline' though they have been warned to just keep her clean and keep their mouths shut and to follow the agreed upon plan that everyone else is using. So I have a sitter and I work from home.
– Name withheld by request
November 9, 2008