Information, Education, Support and Advocacy for
Families, Children, Teens and Adults Who Are Living With The Challenges of
Congenital Anorectal, Colorectal or Urogenital Disorders



Membership Required "For Dads Only"

By: Bonnie McElroy Editor's Note: Pull-thru Network was a chapter of United Ostomy Association from 1988 until UOA ceased operations in 2005. PTN members often attended the UOA National Conference and for several years planned the conference sessions for the parents of children with bladder and/or bowel disorders. This article was written prior to the 2005 United Ostomy Association Conference in Anaheim, California. It was the last conference held by UOA. The United Ostomy Associations of America was founded to fill the void that was left when UOA closed. In August 2007 UOAA will be holding its first conference in Chicago and Pull-thru Network, as one of UOAA's affiliated organizations, has the pleasure of planning the educational sessions for parents along with the fun activities for parents and children. . Once again, the "For Dads Only" session will be on the schedule as it has proven to be an important opportunity for fathers to share and learn from each other.

Membership Required Hirschsprung's Disease

From: Pull-thru Network News Constipation, defined as infrequent or painful passage of bowel movements, is one of the most common problems in pediatrics. During childhood, one of every ten children goes to the doctor for a constipation problem. In contrast, Hirschsprung's disease, a serious childhood condition that can cause constipation, occurs only once in every 5,000 births. Hirschsprung's Disease: What Is It?Hirschsprung's Disease is a genetic disorder named for Harold Hirschsprung, the Dutch physician who first described the disease in 1886 after caring for two boys who were unable to have spontaneous bowel movements. Hirschsprung's Disease is caused by the absence of nerve cells in the wall of the bowel. Collections of nerve cells, called ganglia, control the coordinated relaxation of the bowel wall that is necessary for bowel contents to advance. The portion of bowel without ganglia -- i.e., that is "aganglionic" -- cannot relax. It remains collapsed, and stools cannot pass. Bowel contents build up behind the obstruction. The disease always ends at the anus. Most often it begins in the last foot or two of bowel, called the sigmoid colon and rectum. In some affected children, the aganglionic segment of bowel is shorter; in others, it is longer. The disorder rarely involves the entire bowel.

Membership Required Pediatric Enema Solutions

By: Marti Fledderman, MS, RN, CS, PNP, CN Pediatric Surgery Nurse Practitioner, University of California, Davis Health Systems From: Pull-thru Network News, May 2001 Enemas are one method used for bowel cleansing. Enemas can be administered retrograde (rectally) or antegrade (from an opening in the abdomen which allows fluid administration into the cecum). Recommended enema solutions vary greatly between health care providers in the United States. In theory, solutions that can be given retrograde can also be given antegrade. Because the antegrade enemas flush the colon from above the stool, it often requires less volume than retrograde for complete cleansing.

Membership Required A Parent's Guide to Doctors, Disabilities, and the Family

By: Suzanne Ripley National Information Center for Children and Youth with DisabilitiesWashington, DC How do families choose a primary health care provider or pediatrician for their child? Specifically, how do families with a child who may have a disability and/or special health care need choose a doctor? How do families work with their pediatrician for the maximum benefit of their child, to locate appropriate specialists, correctly assess their child's needs, and work with the education system? These are questions many families ask. This paper will explore these questions and discuss some possible answers.

Membership Required About Fiber

By: Lucille Beseler, MS, RD From: Pull-thru Network News Fibers are the parts of plant food which cannot be fully digested. There are two main types of fiber: water-soluble and water-insoluble. Each has a different effect on the body. Water-Soluble Fiber The water-soluble fiber group has little effect on stool weight and hence is not appropriate treatment for constipation. It is partially broken down by the digestive process to a gel-like consistency which also retains water. This water retaining property makes this fiber an effective treatment for diarrhea. At the same time, foods high in this fiber slow the rate of food absorption and create a feeling of fullness. This may have an adverse effect on appropriate caloric intake for some children by reducing meal size.

Membership Required Are Your Child's Kidneys OK?

Curtis Sheldon, M.D. Chief, Pediatric Urology Cincinnati Children's Hospital Medical CenterCincinnati, Ohio From: Pull-thru Network News, December 2006 We are amazed by the number of children who are being referred to us who already have developed permanent renal injury. Some patients, of course, had poor kidneys to begin with. However, many were initially felt to have one or two good kidneys. Over time, many of these kidneys have deteriorated, often silently without obvious symptoms.

Membership Required Birth to Three - Pre-Bowel Management Strategies

By: Alberto Peňa, MD, PACS, FAAP From: Pull-thru Network News In response to parent's questions, Dr. Peňa was gracious enough to spend a little time and help define the strategies we should use when dealing with our children's needs for the first few years after a pull-thru surgery. When a child is born with imperforate anus, the most important questions to answer are: * Is he going to have bowel control? * What are the specific chances?

Membership Required Bowel Management for Children with Anorectal Malformations

By Kathleen Guardino, RN, MSN From: Pull-thru Network News Dr. Alberto Peña, Chief of Surgery at Schneider Children's Hospital, created the posterior sagittal anorectoplasty surgery to help children who were born with imperforate anus. Since 1980, Dr Peña has operated on 946 children with anorectal malformations, which is the largest series of patients in the world. The ultimate goal for any surgeon operating on these children is to achieve the best urinary control, bowel control and sexual function possible.

Membership Required Caudal Regression

Searching for the Cause Caudal Regression by Karen Brownlow One of the first things a new parent will ask their doctor is "why did this happen to my child?" The answer that most of us have received is that it was simply a fluke of nature. "Searching for a cause" seems to be a touchy subject for many parents of children born with anorectal malformations. Some are driven to track down the one thing that happened during the pregnancy to cause their childs' birth defects. Others feel that since it won't change the present and future care of their child, there is no reason to try and find out what may have happened. In most cases of anorectal malformations, there is probably no way of discovering a single cause because there are so many different factors that could be involved. However, there are a number of known associations, syndromes and sequences that can predispose someone to having a child with an anorectal malformation.

Membership Required Caution: Latex Allergy

From the Pull-thru Network News, February 2001 By: Bonnie McElroy What Is It? Latex is the milky sap from the commercial rubber tree. Many items are made with latex: baby bottle nipples, pacifiers, balls, other toys such as dolls, paints, glue, erasers, adhesive bandages, and latex gloves. Latex also can be found in dental supplies, syringes, catheters, stethoscopes, balloons, television remote controls, automobile tires and carpeting. It is estimated that as many as 40,000 products in a health care environment are made at least partially with latex.

Membership Required Clean Intermittent Self-Catheterization

By Scott Brownlow From: Pull-thru Network News Urinary anomalies are probably the most common associated defect of anorectal malformations, somewhere between 20%-54%, depending on the reference. Many of our children have surgeries to augment their bladders, reimplant their ureters, or tighten the urethral sphincters. Neurogenic bladders are also a common abnormality, and clean intermittent catheterization becomes a necessary component of the management of these children. Many parents wonder when children can take over this process, and self-catheterize.

Membership Required Clostridium Difficile Associated Disease

From: The Pull-thru Network News, May 2002 By: Bonnie McElroy What is Clostridium difficile? This disease involves, initially, alterations of the beneficial bacteria, which are normally found in the colon, by antibiotic therapy. The alterations lead to colonization by C. difficile when this bacterium or its spores are present in the environment. C. difficile can be part of the normal intestinal flora in as many as 50% of children under age two, and less frequently in individuals over two years of age. C. Difficile is the major cause of pseudomembranous colitis and antibiotic associated diarrhea. In the United States alone, it causes approximately three million cases of diarrhea and colitis per year.

Membership Required Constipation in Imperforate Anus

By: Dr. Alberto Peña From: Pull-thru Network News The great major­ity of patients born with imper­forate anus who undergo a repair which includes the preservation of their original rectum will suffer constipation. This constipation seems to be the clinical mani­festation of a hypomotility disorder of the rectosigmoid colon. Further analysis of our cases show that this problem of con­stipation is worse in lower defects. We have found that the reverse is also true, the higher the malformation, the more chance of suffering from fecal incontinence and the less chance of having constipation.

Membership Required Decisions, Decisions...Some Advice On Choosing Surgical Options

By Scott Brownlow From: Pull-thru Network News As we sat in the surgeon's office, our gaze went from his face to each others and back again. With a few short sentences, he had dropped into our laps one of the biggest decisions we may ever have to make. The surgeon had outlined our choices as follows: a) leave our daughter with a permanent colostomy, or b) do a "pull-through" and surgically create what would hopefully be a functioning intestinal tract. Had my daughter's prognostic chances for bowel control been excellent, it would have been a "no-brainer." But since she had many of the characteristics indicating a poor chance at bowel control the question was much more difficult.

Membership Required Dilatations: An Important Final Step In The Repair of Anorectal Malformations

By: Dr. Alberto Peña From: The Pull-thru Network News, November 1998 In the old literature, it is not unusual to read that some surgeons think that patients can have anorectal malformation repairs without the need for anal dilatations. That way of thinking comes from the old times; in those years we were instructed to create a very large anus because we did not want the child to suffer from a stricture.

Membership Required Emergency Preparedness for Special Needs Children

Emergency Preparedness for Special Needs Children From: Pull-thru Network News, September 2006 As many of you know, my family and I are Hurricane Katrina survivors. Emergencies will come, but it's hard to prepare for something you've never experienced before. You can go online and get lots of tips, but I thought I'd share a few common sense ones that are not usually featured. Let me describe to you how susceptible we were to being unprepared:

Membership Required Fecal Incontinence in Children with Anorectal Malformations

By: Charles N. Paidas, M.D.Baltimore, Maryland Reprinted in Pull-thru Network Newsfrom Seminars in Pediatric Surgery, Vol 6, No. 4, November 1997, pp 228-234 Fecal incontinence is associated with anorectal malforma­tions, Hirschsprung's disease, spina bifida, chronic constipa­tion, and trauma to the lumbosacral spine and perineum. An effective evaluation and treatment plan for children who suffer from fecal incontinence may ameliorate the social and psycho­logical sequelae of this devastating problem. In general, treat­ment plans for fecal incontinence should not be viewed as "cures" but rather an approach toward a more normal lifestyle. This is especially true for the spectrum of congenital anorectal anomalies. The focus of this chapter will be the children with anorectal malformations. However, many of the recommenda­tions for bowel management have been employed by the author for the other causes of fecal incontinence.

Membership Required From Our Medical Advisor

By Alberto Peña, MD, FACS, FAAP From: Pull-thru Network News The first important matter that parents must learn about anorectal malformations is that there is a very large spectrum of defects and that each one is different from the other. However, there are certain categories or types of defects with similar prognosis and management.

Membership Required Medical Home Initiative

American Academy of Pediatrics The National Center of Medical Home Initiative For Children With Special Needs141 Northwest Point Blvd.Elk Grove Village, Illinois 60007845/ From: Pull-thru Network News, December 2006

Membership Required Medications for Bowel Management

From: The Pull-thru Network News Vol. 11, No. 3 - September 2002 By: Bonnie McElroy As we all know, achieving the optimal bowel management program is an exercise in trial and error. First we must decide which method we are most comfortable with. If the decision is made to work with bowel medications the good news is that we have many products to choose from. The bad news is that there are so many products to choose from. It's all so confusing.

Membership Required Permanent Ostomies and Our Kids

By Cathy Tague From: Pull-thru Network News When I decided to write an article on life after failed bowel training, I had a lot of mixed emotions. I still do, actually. We all want our kids to be "normal," you know, just like all the other kids. It's not easy to go to your child's preschool or kindergarten teacher and try to explain why they are still wearing diapers. I know for me that was very difficult. For the longest time, I didn't want anyone to know that Andrew was not potty trained. Somehow, that seemed like another personal failure to me. If only I had tried a little harder, had better ideas, pushed him beyond his young limitations a bit more often... maybe just maybe he would have succeeded. Deep in my heart, I knew that he just didn't have any sphincter or nerves to feel with. I thought maybe my own will for him to be just another kid could prevail.

Membership Required Rash Advice

Prevention and Treatment of Diaper Rash By: Jan Clark, RN, CWOCNFrom: Pull-thru Network News, March 2005 IntroductionDiaper rash, also known as irritant diaper dermatitis, is a disruption of the barrier function of the skin through prolonged contact with feces, urine, moisture or friction. Erosion of skin is also a complication of incontinence, diversion and peg tubes or drainage tube sites. Prevention and treatment of denuded skin caused by stool, urine or external devices can be accomplished with the same methodology and a variety of products.

Membership Required The Philosophy Behind the Bowel Management Program at Schneider Children's Hospital

Dr. Alberto Peña, MD, FACS, FAAP From: Pull-thru Network News, Spring 1996 The implementation of the bowel management program at the Schneider Children's Hospital has been motivated by the fact that a significant number of children (30-40%) with anorectal malformations, in spite of having a good operation, will still suffer from different functional sequelae which includes constipation, complete fecal incontinence, minor incontinence, minor fecal soiling and different degrees of urinary continence. The complete cure for these problems will come sometime in the future from very serious, sophisticated basic scientific research. Therefore, all these children suffering from these sequelae need help now.

Membership Required Self Esteem and Your Child

By: Sandra G. Rubin, M.D.Attending Physician Children's Hospital, National Medical Center, Washington, D.C. It is natural for us to pay attention to how we feed our bodies. We think about vegetables, fruits, and the quality of the water we drink. We take vitamins, eat the appropriate diet, but we sometimes forget about feeding our minds. I like to think about self-esteem as the nutrition for our souls.

Membership Required After Your Child's Diagnosis - Finding Information and Support

From: Pull-thru Network News, December 2005 After Your Child's Diagnosis is designed to offer general advice for the parents of a child with almost any disease or condition. It has tips to help you learn more about your child's specific problem and how it can be treated.

Membership Required Anesthesia Facts and Tips

From: Pull-thru Network News "It's natural to be anxious when your child needs anesthesia. You are, after all, placing his life in the hands of strangers. To a great extent you must trust these professionals - who would not be in practice long if they did not provide safe care. Knowing what will happen every step of the way can help reassure you and your child." When our daughter Sydney was born and the first of several surgeries was scheduled we had many questions and fears about the procedures, the skill of the doctors, the recovery, and of course the anesthesia. We also discovered that the completion of each surgery did not develop an increased level of confidence; as each new surgery approached, a whole new set of issues needed to be addressed. Fortunately for us we were blessed with a close friend who also happens to be a doctor. Each time we called on our friend to answer our questions, we found reassurance in our newfound knowledge of the procedures, medical personnel, anticipated recovery, and available pain management. We also had an optimistic prognosis that all would work out for the best.

Membership Required Cloacal Exstrophy

From: Pull-thru Network News Cloacal Exstrophy is a very rare and complicated birth defect. It occurs once in every 250,000 births. It affects the midline of the body. Description of Cloacal Exstrophy Cloacal exstrophy is often referred to by different labels including: Vessico Intestinal Fissure, Exstrophy of the Cloaca, Exstrophia of the Spalancia, and OEIS Complex. I find the label of OEIS Complex to be the easiest way to explain this birth defect.
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Membership Required Laparoscopic Surgery for the Treatment of High Anorectal Malformations

By: Thomas H. Inge, MD, PhDAssistant Professor of Surgery and Pediatrics,Department of Pediatric Surgery,Cincinnati Children's Hospital Medical Center and Department of SurgeryUniversity of Cincinnati College of Medicine, Cincinnati, OhioFrom: Pull-thru Network News, February 2002 A New, Minimally Invasive Surgical TechniqueTo treat diseased or abnormal anatomy, pediatric surgeons have traditionally had to dissect through normal tissue in order to provide adequate surgical exposure. Within the last decade, however, new minimally invasive surgical techniques have revolutionized many surgical procedures by enabling surgeons to access body cavities for procedures while reducing injury to overlying skin, muscles and nerves.

Membership Required Latex Allergy

From the Mayo Clinic Website Signs reading "Latex-free area" are being posted in more and more hospitals and clinics around the United States. That's because allergic reactions to latex, a substance found in all kinds of health care and consumer products, have become increasingly common in recent years. Latex allergy can be a problem not only for health-care workers but also for patients. Latex, a natural rubber product derived from the milky sap of the rubber tree, may he found in examination and surgical gloves, intravenous and respiratory supplies and many other medical and dental products. Consumer products containing latex include condoms, diaphragms, rubber gloves, balloons, and tires.

Membership Required Neurogenic Bladder

Pull-thru Network News, February 2001 By: Bonnie McElroy For the urinary system to work correctly the muscles and nerves must work together to hold urine in the bladder and then release it at the right time. Neurogenic bladder is a dysfunction that results from interference with the normal nerve pathways associated with urination.

Membership Required New Developments in the Management of Fecal Incontinence

By Alberto Peña, M.D., F.A.C.S., F.A.A.P.From: Pull-thru Network News There are internists, surgeons and researchers in different parts of the world who are working hard to find different ways to improve the quality of life for children who suffer from fecal incontinence. We feel, however, that there is not enough research going on and that this problem deserves far more attention and effort from both the medical and surgical community.

Membership Required Rectal Prolapse in Patients with Anorectal Malformations

By: Alberto Peña, M.D.From: Pull-thru Network News, June 1999 Rectal prolapse is defined as the protrusion or exteriorization of the rectal tissue from inside out. It is manifested as the presence of a cherry-like, wet tissue that tends to bleed easily if touched. Prolapse may occur in normal children, which is called ideopathic prolapse. This means it is of unknown origin. In normal children, it is a very unusual event. Most of the time, the doctors cannot find the reason why the patient has this problem and this is why it is called ideopathic. A small group of these patients suffer from a basic condition that predisposes them to suffer from prolapse, such as inflammatory bowel disease, cystic fibrosis or a deficient sphincter as happens in patients with spina bifida.

Membership Required Tethered Spinal Cord

Reprinted with permission from Your Child and Neurosurgeryby: Fred Epstein, M.D. Edited by Rick Abbott, M.D.From: Pull-thru Network News, Summer 1996 There are a number of skin abnormalities that occur along the midline of the back that are indicative of an underlying abnormality of the spinal cord. The great majority of these "neurocutaneous signatures" occur in the region of the small of the back just above the hip bone (the spine's lumbar-sacral junction) and are associated with a "tethered cord" (a spinal cord unable to move because of its being held by surrounding tissues). Most infants with this condition are neurologically normal at birth and, for this reason; it is essential to recognize the association between the neurocutaneous signature and the underlying pathology inasmuch as progressive neurological dysfunction usually occurs in the absence of satisfactory treatment.

Membership Required The Failed Anoplasty: Successful Outcome After Reoperative Anoplasty and Sigmoid Resection

By: R. Lawrence Moss, MDPalo Alto, California Reprinted with permission in the Pull-thru Network News - from the Journal of Pediatric Surgery, Vol. 33, No. 7 (July), 1998, pp 1145-1148 Children born with anorectal malformations frequently have less than optimal results after repair. Many of these children suffer from constipation or fecal incontinence throughout childhood and adolescence. Frequently, the par­ents have been told by their physician that further surgical therapy will not improve the symptoms.

Membership Required The Mitrofanoff Procedure

Pull-thru Network News, August 2002 A major break through in the field of urology occurred in 1980, when Dr. Paul Mitrofanoff described his continent cystostomy technique. This procedure is now commonly referred to as the Mitrofanoff Procedure. This procedure offers an alternative to transurethral catheterization and is widely accepted in the medical profession for various indications. These indications include, but are not limited to, neuropathic bladder, bladder exstrophy, cloacal exstrophy, spina bifida, and anorectal malformations.

Membership Required What Is A Child Life Specialist

From: Pull-thru Network News, May 2005 Everyone experiences anxiety and stress prior to hospitalization or medical procedures, and for children, the fear can be particularly intense. It is extremely important to explain all events and sensations children will experience during a hospitalization or procedure. This explanation should include everything from touring the hospital to preparing for an IV insertion to allowing them to touch the medical equipment they will encounter. By letting the child know what they may see, hear, feel, taste, and smell during the procedure and reducing unexpected encounters, a child's fear can be significantly minimized. This preparation often relieves parents', significant others' or caregivers' anxieties as well, enabling them to be a better comfort to their child. Child Life programs are a valuable resource for families during hospitalization or medical procedures.
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Membership Required What's Deductible - Medical-Dental Expenses and the IRS

From: Pull-thru Network News, December 2005 What are medical expenses? Medical expenses are the costs of diagnosis, cure, mitigation, treatment, or prevention of disease, and the costs of treatments affecting any part or function of the body. They include the costs of equipment, supplies, and diagnostic devices needed for these purposes. They also include dental expenses.

Membership Required Gynecologic Concerns in the Treatment of Teenagers With Cloaca

By: M.A. Levitt, D.M. Stein and A. PeñaNew Hyde park, New York and Bronx, New York Journal of Pediatric Surgery, 33-188-193. Copyright 1998 by WB Sanders Company (This article has been heavily edited to make it more accessible to our readers) From: Pull-thru Network News