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.
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 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
Chief of Pediatric Gastroenterology
University of Kansas Medical Center
Find 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.
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 wittheld
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.
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
MApril 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.
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.