CRS Clinical Practice Guidelines for Neurogenic Bowel in Spina Bifida

(Original January 2, 2013, Updated December 2015)

By: Jessica Edgar CPNP Orthopedics and Spina Bifida Clinics at CRS and Pamela Murphy MD Spina Bifida Clinics at Children’s Rehabilitative Services – Phoenix, Arizona

Keywords:  Neurogenic Bowel; Fecal Incontinence; Cecostomy: Chait Tube; Bowel Management: Antegrade Enema; MACE Procedure; Malone Procedure; Spina Bifida; Imperforate Anus

The purpose of clinical practice guidelines in patients with neurogenic bowel and spina bifida is to help families establish a regular bowel program in order to achieve social continence for the child with neurogenic bowel and to maintain healthy bowels. By establishing agreed upon guidelines, all members of the Spina Bifida Team can help promote social continence and healthy bowel function in addition to anticipatory guidance within his or her specialty by understanding the necessary goals and steps being recommended for each developmental stage.

According to Michael S. Schechter et al, only 2/3 of patients with spina bifida achieve social continence by age 10 thus underscoring the importance of regular discussion, education, and intervention to help patients and families achieve social continence of bowel starting in infancy. It is the goal of this team to have achieved social continence of bowel by entrance into kindergarten.

Considerations

No bowel program can begin without a colon free from fecal impaction. An x-ray may be ordered to determine whether the bowels are full of stool. If an infant is already evacuating a good amount daily, then this step is not necessary. Prescribe a bowel clean out using Miralax, magnesium citrate, or milk of magnesia if necessary. For infants, use a glycerin suppository.

It has been the experience of this Spina Bifida Team that achieving social continence using an oral program is difficult. Therefore, if selecting an oral program, close follow up is recommended in order provide support to patient and family, as well as make necessary modifications to the program in a timely manner.

Definitions

Constipation– difficulty passing stool, the passage of hard or dry stool, and a lack of bowel movement on a daily basis.

Timed elimination– establishing a regular time of day for bowel elimination.

Social continence bowel- Our team defines social continence of bowel to be less than two bowel accidents per month during the day and rare smearing accidents.

Retrograde enema– Enema program in which enema solution is introduced by trans anal route for bowel cleanout. Because the solution comes from below and flushes bowel in opposite direction, it is given the name retrograde. This routine is generally performed nightly or every other night using a special kit such as the Cone Enema Kit or Peristeen Kit.

Antegrade enema– Enema program in which the enema solution is introduced at start of colon through an opening in the abdomen created surgically such as a Chait cecostomy or a Malone Antegrade Colonic Enema (MACE) stoma. The solution is the same as in retrograde enemas and it is also normally performed nightly.

— Infants —

PRIMARY GOAL: The infant will usually have one to two good bowel movements a day of normal consistency and size. Try to avoid numerous diapers with small amounts of stool. Some breastfed babies may have a large amount of watery stool every few days.

SECONDARY GOAL: Prevent chronic constipation and colonic distention (mega colon) in order to prepare for toddler stage and toilet sitting.

Bowel Management Options

  • Record bowel movements on chart (Appendix 3, 4) from Bowel Management and Spina Bifida
  • Add 4 oz prune or apple juice daily to diet to promote soft stools.
  • May use Miralax or Caro Syrup if necessary.
  • If necessary, position infant on her back with her knees to her chest to promote bowel evacuation.
  • As infant transitions towards solid foods, educate parent on introducing high fiber cereals, fruits, and vegetables as a way to avoid constipation.
  • Consider digital stimulation or liquid glycerin suppository for no bowel movement or for frequent, small amounts of stooling throughout the day.

— Toddler/ Preschool —

PRIMARY GOAL: Transition from diapers to toilet stooling. The toddler should have one to two good bowel movements a day of normal consistency and size in the toilet at a predictable time each day.

SECONDARY GOAL: Promote independence by creating opportunities for the toddler to choose toilet sitting rather than diaper stooling. As the toddler grows and develops, a formal approach to bowel care occurs with increasing opportunities for the child to become independent. The parent continues to monitor stool consistency and timing of bowel emptying.

Bowel Management

  • Parent identifies when toddler is having bowel movements using charts from Appendices 3 and 4.
  • All diaper changes at this point should occur in the bathroom to teach that bowel/bladder emptying occurs here and is therefore a private matter. Offer the toilet or potty chair immediately after the suppository is given. The toddler may choose where to place the chair. Offer games, books, etc. to allow toilet sitting for at least 10 minutes.
  • As the toddler grows and matures, offer choices in types of fluids and foods that include fiber in order to lay the groundwork for future independent decision making.
  • At preschool age, the parent continues encourage regular toileting and monitors stools.
  • For a regular sized toilet, place a stool under the child’s feet.

Options:

Oral Program

  • Provide senna 6 hours before the normal time the child has a bowel movement (or at agreed upon time by family) to provoke a bowel movement. Keep in mind that senna doses may be prescribed at doses higher than the normal population due to the neurogenic bowel. Senna functions as an irritant (stimulant laxative) to the neurogenic colon and helps move stool towards the rectal vault by promoting peristalsis.
  • Sit on toilet at time bowel movement is to take place. Toddler should sit for about 20 minutes.
  • Consider using a glycerin suppository at time bowel movement is desired.
  • Include fluid and fiber on a daily basis. Add Benefiber, Citrucel, lactulose, or pectin to foods or liquids to promote a soft, formed stool. Fiber goals are child’s age plus 5-10 ( 1 yr + 5-10 = 6-21 grams of fiber daily).
  • Typically the recommendation is to take senna at bedtime, eat a good breakfast in the morning and then toilet sits after breakfast, thus taking advantage of the gastro colic reflex.

Retrograde Enema Program

  • Use Cone Enema Kit or Peristeen (ages 3 or 4 and older) if the oral program is unsuccessful and if the child is developmentally mature enough to tolerate a program of 30 minutes or longer. A retrograde program may be difficult with in children with poor truncal control. A retrograde program may be the first choice, if the child has never had a real bowel program before and the parent wants to get the child free from soiling and into underwear.

The enema recipe will consist of:

  • Water ( 20mg/kg )
  • Salt 1 tsp/500ml
  • Consider adding liquid glycerin or liquid castile soap 10ml-30ml.

The solution is a saline solution, which is more like the body’s own natural chemical makeup. Additionally, an irritant (liquid glycerin or castile soap) may be added to the solution to promote full evacuation of the colon within an appropriate timeframe.

  • The members of the Spina Bifida Team agree that the bowel program should take no longer than one hour from start to finish. Ideally, a bowel program should be completed within 30 minutes.
  • This recipe is suggested for antegrade enemas also.
  • ½ a bottle of Fleet’s enema primer is acceptable for patients without renal disease

——— School Age (5 to 12) ———

PRIMARY GOAL: Establish a transitional plan that promotes and supports the child’s independence and privacy in bowel self-care and encourages social continence with but with parental cues, support, surveillance, and assistance if necessary.

  • Child gradually becomes responsible for as much of bowel care program as he or she can.
  • Parent helps the child become involved in all aspects of bowel care.
  • Parent helps teach the child the importance of social continence/hygiene.
  • Child should be familiar with all steps to guide others when necessary.

Options:

Oral Program

  • Continue with oral program using daily senna and fiber supplements and suppository if necessary. Doses may need to be prescribed at doses higher than normal for patients with neurogenic bowel. Daily toilet sitting should occur. The school age child can now be responsible for recording bowel movements.

Retrograde Enema Program

  • Consider Cone enema/Peristeen if oral program unsuccessful. Follow the guidelines previously discussed.
  • Encourage homework, reading or other activity.

Antegrade Enema Program

  • Consider an antegrade colonic enema program or cecostomy if the retrograde program is unsuccessful or for patients who have failed to establish a bowel program using oral medications. Also, consider this with a successful trial of either the Cone Enema or Peristeen Kit. Use the recipe above.

——— Adolescents (13 to adulthood) ———

PRIMARY GOAL: Become independent in all care measures related to bowels. If skill ability prevents this, then the goal is to be able to direct a personal caregiver.

SECONDARY GOAL: Establishment and/or continuation of a regular program that can be performed independently keeping in mind that adolescence is an emotionally turbulent time. Parents are reminded that in this population they still need to remind and be available for standby and support as patients with spina bifida typically need cues well into adulthood.

Options:

Oral Program

  • Continue with oral program using daily senna and fiber supplements and suppository if necessary. Doses may need to be prescribed at doses higher than normal for patients with neurogenic bowel. Daily toilet sitting should occur. The school age child can now be responsible for recording bowel movements.

Retrograde Enema Program

  • Consider Cone enema/Peristeen if oral program unsuccessful. Follow the guidelines previously discussed.
  • Encourage homework, reading or other activity.

Antegrade Enema Program

  • Consider an antegrade colonic enema program or cecostomy if a retrograde program is unsuccessful or for patients who have failed to establish a bowel program using oral medications. Also, consider this with a successful trial of a retrograde program. Use the recipe above.

****** REFERENCES ******

Centers for Disease Control and Protection [CDC]. (2015). Key findings: Sociodemographic attributes and spina bifida outcomes. Retrieved from: http://www.cdc.gov/ncbddd/spinabifida/features/keyfindings-sociodemographic-attributes-spinabifida-outcomes.html

Liebold, SR. (2010). Achieving continence with a neurogenic bowel. Pediatric Clinics of North America; 57:1013-1025.

Levitt, MA and Pena, A., (2010). Pediatric fecal incontinence: A surgeon’s perspective.  Pediatrics in Review, 31, 91-101.

Sanders, C., Bray, L., Driver, C., and Harris, V. (2014). Parents of children with neurogenic bowel dysfunction: their experiences of using trans anal irrigation with their child. Child: Care, Health and Development, 40 (6), 863-869.

Schechter, M.S., Liu, T., Soe, M., Swanson, M., Ward, E. Thibadeau, J. (2015). Sociodemographic attributes and spina bifida outcomes. Pediatrics, 135 (4), 957-964

Spina Bifida Association, (2009). Bowel Management and Spina Bifida. Eds. Braun, PB,

Brown, JP, Liebold, S., Peterson, PR, Rauen, K. Bar-Yousef, Castellan, M., Joshi, D., Labbie, A. and Gosalbez, R (2011). Total continence reconstruction using the artificial urinary sphincter and the Malone antegrade continence enema. Journal of Urology, 185, 1444-1448.