eMedicine Specialties > Gastroenterology > Colon

Hirschsprung Disease: Follow-up

Author: Steven L Lee, MD, Chief, Pediatric Surgery, Department of Surgery, Kaiser-Permanente, Los Angeles Medical Center
Coauthor(s): Shant Shekherdimian, MD, Consulting Surgeon, Department of Surgery, Kaiser Foundation Hospital; Jeffrey J DuBois, MD,, Chief of Children's Surgical Services, Division of Pediatric Surgery, Kaiser Permanente, Women and Children's Center, Roseville Medical Center
Contributor Information and Disclosures

Updated: Dec 28, 2009

Follow-up

Further Inpatient Care

  • If a diverting colostomy is created in a newborn, he or she must remain in the hospital until the ostomy is functioning and feeding goals are obtained. Feedings are usually initiated 24-48 hours after the creation of the colostomy.
  • After the definitive pull-through procedure is performed, the patient is hospitalized until full feedings are possible and evidence of the return of bowel function is obtained. Patients are to take nothing by mouth, with intravenous fluid hydration until they pass flatus or have a bowel movement. Once this occurs, clear liquids may be started, and the diet may be advanced until feeding goals are obtained. Intravenous antibiotics are also continued until evidence of proper bowel function is observed.

Further Outpatient Care

  • After a definitive pull-through procedure is performed, normal growth and development should ensue.
  • Patients should be monitored for normal bowel habits. Patients with no other underlying disorders and no postoperative complications should develop normal bowel habits. However, such habits may not develop until the patient is older.

Inpatient & Outpatient Medications

  • Immediately after the diverting colostomy is created or a definitive pull-through procedure is performed, patients should usually remain on broad-spectrum intravenous antibiotics (eg, ampicillin, gentamicin, metronidazole) until bowel function has returned and feeding goals are achieved.
  • Once a definitive pull-through procedure is performed and normal bowel function is obtained, no additional medication is required.

Transfer

  • Neonates and older children thought to have Hirschsprung disease should be treated in a center where pediatric specialists are available to make the diagnosis and to provide definitive care.

Deterrence/Prevention

  • Hirschsprung disease cannot be prevented; however, heightened clinical awareness prevents a delay in diagnosis.

Complications

  • Potential complications for the complex operations associated with Hirschsprung disease encompass the entire spectrum of GI surgical complications.
    • Although the incidence rates of these complications are roughly the same when surgeons with experience perform the procedures versus when surgeons with less experience perform them, each procedure has been associated with a specific level of difficulty.
    • Complications may include an increased incidence of postoperative enterocolitis with the Swenson procedure, constipation following the Duhamel repair, and diarrhea and incontinence with the Soave pull-through procedure.
    • In general, the complications are anastomotic leakage and stricture formation (5-15%), intestinal obstruction (5%), pelvic abscess (5%), wound infection (10%), and wound dehiscence and incomplete resection requiring re-operation (5%). Patients with 2-staged operations may also develop stomal complications, such as prolapse or stricture.
  • Later complications associated with surgical management of Hirschsprung disease include enterocolitis, continued obstructive symptoms, incontinence, chronic constipation (6-10%), and late mortality, mostly affecting patients with long-segment disease (1-5%). Rectovesical fistulas have also been reported in the literature.20
  • Enterocolitis accounts for significant morbidity and mortality in patients with Hirschsprung disease.
    • Enterocolitis results from an inflammatory process of the mucosa of the colon or small intestine. As the disease progresses, the lumen of the intestine becomes filled with fibrinous exudate and is at increased risk for perforation. This process may occur in both the aganglionic and ganglionic portion of the bowel.
    • Patients typically present with explosive diarrhea, abdominal distention, fever, vomiting, and lethargy.
    • Approximately 10-30% of patients with Hirschsprung disease develop enterocolitis. Long-segment disease is associated with an increased incidence of enterocolitis. Moreover, the risk of developing enterocolitis remains despite surgical correction.
    • Treatment consists of intravenous antibiotics and aggressive colonic irrigations. Some authorities advocate decompression of the bowel, especially in patients with long-segment disease, with an enterostomy placed proximally to the transition zone.
  • Patients may present postoperatively with abdominal distension, vomiting, or constipation indicative of ongoing obstruction.36
    • Mechanical obstruction can be easily diagnosed with digital rectal exam and barium enema. Serial dilatations or even revision of the pull-through may be required.4
    • Persistent aganglionosis occurs rarely and may be due to pathologic error, inadequate resection, or loss of ganglion cells after the pull-through. If a rectal biopsy does not show ganglion cells, revision of the pull-through must be done.31,37,38,39
    • Motility disorders may be associated with Hirschsprung disease. Workup may include contrast studies, manometry, and biopsy to evaluate for intestinal neuronal dysplasia.40,41
    • Internal sphincter achalasia may result in persistent obstruction. This can be treated with internal sphincterotomy, intrasphincteric botulinum toxin, or nitroglycerin paste. Most cases will resolve by the age of 5 years.42,43
    • Functional megacolon may be present due to stool-holding behavior. Bowel management regimens may be implemented with cecostomy and antegrade enemas reserved for refractory cases.44
  • Incontinence may be the result of abnormal sphincter function, decreased sensation, or overflow incontinence secondary to constipation.36 In general, anorectal manometry and ultrasound should aid in differentiating between these diagnoses.

Prognosis

  • The long-term outcome after definitive repair of Hirschsprung disease is difficult to determine because of conflicting reports in the literature. Some investigators report a high degree of satisfaction, while others report a significant incidence of constipation and incontinence.
  • Unfortunately, approximately 1% of patients with Hirschsprung disease require a permanent colostomy to correct incontinence.
  • As expected, patients with associated trisomy 21 tend to have poorer clinical outcomes.
  • In general, more than 90% of patients with Hirschsprung disease have satisfactory outcomes, although many patients may have disturbances of bowel function for several years before developing normal continence.

Miscellaneous

Medicolegal Pitfalls

  • Potential medicolegal pitfalls may be related to the diagnosis and treatment of children with this disorder. Children with Hirschsprung disease should generally be cared for by pediatric surgeons and gastroenterologists.
  • Any child with a history of constipation since birth requires an extensive workup and should be referred to appropriate specialists. A trial of medical management should not be initiated until Hirschsprung disease has been appropriately excluded.

Special Concerns

  • Ultrashort-segment Hirschsprung disease
    • Ultrashort-segment Hirschsprung disease is characterized by a few centimeters of aganglionic bowel in the rectum, adjacent to the anus.
    • Recognizing this condition can be very difficult. These patients are not typically diagnosed with Hirschsprung disease until they are older.
    • The principal symptom is severe constipation that usually begins between the ages of 6-12 months.45
    • Barium enemas tend not to demonstrate a transition zone.
    • Anorectal manometry is useful in the workup of these patients and demonstrates an absent anorectal reflex, but the definitive diagnosis is made by rectal biopsy.
    • A definitive pull-through procedure is usually unnecessary because most patients with ultrashort-segment disease can be satisfactorily treated with a surgical myomectomy. This involves resecting a longitudinal strip of the posterior muscular wall of the rectum.
  • Total colonic aganglionosis
    • Total colonic aganglionosis is a more severe form of Hirschsprung disease in which the entire colon and even some of the small intestine is aganglionic. It occurs in 3-12% of cases and extends to the terminal ileum in about 75% of cases, to the mid-ileum in about 20% of cases, and to the jejunum in 5% of cases.46
    • These patients tend to have more severe signs and symptoms than those who have other forms of Hirschsprung disease and have been found to have increased morbidity and mortality.47,46,48
    • Diagnosis may prove to be difficult with radiographic studies being diagnostic in only 20-30% of cases. In general, diagnosis is made at the time of laparotomy or leveling colostomy. Frozen section of the appendix confirms the diagnosis.49
    • Any of the 3 standard repairs may be used to treat patients with total colonic aganglionosis, although primary pull-through in the newborn period is controversial since results in this subgroup of patients is poorer than in those with rectosigmoid disease.49
    • Specific modifications have been made to these repairs, with the goal of increased fluid and electrolyte absorption.
 


More on Hirschsprung Disease

Overview: Hirschsprung Disease
Differential Diagnoses & Workup: Hirschsprung Disease
Treatment & Medication: Hirschsprung Disease
Follow-up: Hirschsprung Disease
Multimedia: Hirschsprung Disease
References
Further Reading
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Further Reading

Related eMedicine Topics

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Keywords

Hirschsprung disease, Hirschsprung's disease, megacolon, colonic aganglionosis, ultrashort-segment Hirschsprung disease, congenital aganglionosis, aganglionic megacolon, acquired megacolon, congenital dilation of the colon, congenital megacolon, aganglionic megacolon, meconium, anorectal reflex, chronic constipation, enterocolitis, rectosigmoid colon aganglionosis, total colonic aganglionosis,
 
trisomy 21, Down syndrome, bowel obstruction, bilious vomiting, abdominal distention, poor feeding, failure to thrive, myenteric plexus, Auerbach plexus, submucosal plexus, Meissner plexus, colonic lavage, full-thickness rectal biopsy, simple suction rectal biopsy, anorectal manometry, diverting colostomy, Swenson procedure, Duhamel procedure, Soave procedure, anorectal myomectomy

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Contributor Information and Disclosures

Author

Steven L Lee, MD, Chief, Pediatric Surgery, Department of Surgery, Kaiser-Permanente, Los Angeles Medical Center
Steven L Lee, MD is a member of the following medical societies: Alpha Omega Alpha, American Academy of Pediatrics, American College of Surgeons, American Pediatric Surgical Association, Association for Academic Surgery, Society of American Gastrointestinal and Endoscopic Surgeons, and Society of Laparoendoscopic Surgeons
Disclosure: Nothing to disclose.

Coauthor(s)

Shant Shekherdimian, MD, Consulting Surgeon, Department of Surgery, Kaiser Foundation Hospital
Disclosure: Nothing to disclose.

Jeffrey J DuBois, MD,, Chief of Children's Surgical Services, Division of Pediatric Surgery, Kaiser Permanente, Women and Children's Center, Roseville Medical Center
Jeffrey J DuBois, MD, is a member of the following medical societies: Alpha Omega Alpha, American Academy of Pediatrics, American College of Surgeons, American Pediatric Surgical Association, and California Medical Association
Disclosure: Nothing to disclose.

Medical Editor

Vivek V Gumaste, MD, Associate Professor of Medicine, Mt Sinai School of Medicine; Adjunct Clinical Assistant, Mt Sinai Hospital; Director, Division of Gastroenterology, City Hospital Center
Vivek V Gumaste, MD is a member of the following medical societies: American College of Gastroenterology and American Gastroenterological Association
Disclosure: Nothing to disclose.

Pharmacy Editor

Francisco Talavera, PharmD, PhD, Senior Pharmacy Editor, eMedicine
Disclosure: eMedicine Salary Employment

Managing Editor

Oscar S Brann, MD, FACP, Associate Clinical Professor, Department of Medicine, University of California at San Diego; Consulting Staff, Mecklenburg Medical Group
Oscar S Brann, MD, FACP is a member of the following medical societies: American Gastroenterological Association
Disclosure: Nothing to disclose.

CME Editor

Alex J Mechaber, MD, FACP, Associate Dean for Undergraduate Medical Education, Associate Professor of Medicine, University of Miami Miller School of Medicine
Alex J Mechaber, MD, FACP is a member of the following medical societies: Alpha Omega Alpha, American College of Physicians-American Society of Internal Medicine, and Society of General Internal Medicine
Disclosure: Nothing to disclose.

Chief Editor

Julian Katz, MD, Clinical Professor of Medicine, Drexel University College of Medicine; Consulting Staff, Department of Medicine, Section of Gastroenterology and Hepatology, Hospital of the Medical College of Pennsylvania
Julian Katz, MD is a member of the following medical societies: American College of Gastroenterology, American College of Physicians, American Gastroenterological Association, American Geriatrics Society, American Medical Association, American Society for Gastrointestinal Endoscopy, American Society of Law Medicine and Ethics, American Trauma Society, Association of American Medical Colleges, and Physicians for Social Responsibility
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