Tag Archives: spina bifida

Bowel Management Recommendations

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A recent “consensus” review on bowel management (G Mosiello et al. JPGN 2017; 64: 343-52) is available as an open access article –Link: Consensus Review of Best Practic of Transanal Irrigation in Children

The use of bowel management tube (or cone) for transanal irrigation has been around since ~1987 (B Shandling et. al. J Ped Surg 1987; 22: 271-3) and generally is considered in children older than 3 years of age with severe problems with defecation (organic and functional).

This particular review has a very good table on troubleshooting (Table 4) and a succinct summary of indications/contraindications (Table 2).

Related blog entries:

 

 

Spina Bifida, Humility, and Quality of Life

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While a recent article (J Pediatr 2013; 162: 993-98) on spina bifida and its effect on quality of life provide useful information, the accompanying editorial by John Freeman (J Pediatr 2013; 162: 894-95) had much broader implications for me.

The referenced article provides data showing the effects of spina bifida on quality of life QOL), even in those who reported their current health as good.  The tools that the investigators used for 40 youth and 13 young adults were the HUI-3 and AQoL.  Both of these tools correlated health-related QOL (HR-QOL) and the level of the anatomic lesion; those with thoracic/higher lesions had worse HR-QOL.

Some of the points made by Dr. Freeman:

  • Quote at start: “Health: A state of complete physical, mental, and social well-being and not just the absence of sickness or frailty.” –World Health Organization
  • In 2004, he followed up with two patients who he had presumed to be quite successful.  Both “were living at home, wheelchair-bound, with high paraplegias.  Both were community college graduates and employed….When I asked them what I should tell parents delivering a newborn with spina bifida, each replied, ‘I wish I had never been born.’ I was shocked.”
  • He notes that the referenced article had a low participation rate (39%) which could introduce significant biases.  “Were the respondents those with greater or less disability?”
  • Conclusion: “I will not presume to have answers to these questions but propose further discussion of the quality-of-life issues…on decisions regarding early treatment of spina bifida.”

These studies make it clear that some children with spina bifida, particularly those with higher lesions, have poor HR-QOL.  The broader implication is that many children/adults who we think are doing pretty well do not see it that way.  Trying to determine what the future holds for children with chronic health problems in infancy is difficult.  Even in the most severe diseases, most parents want everything done.  Will this type of information change anything?

Diagnostic tests hardly ever help patients poop

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Virtually everyday pediatric gastroenterologists like myself see children with constipation problems; managing constipation is often a Sisyphean task.  Recent articles (JPGN 2011; 53: S2: 49, 55) reiterate what all pediatric gastroenterologists already know –constipation is almost always a management problem and only rarely a diagnostic problem.  Rarely do children with constipation need diagnostic tests.  These articles recommend testing only if alarm features are present, including the following:

  • Delayed meconium passage at birth
  • Bilious vomiting
  • Bloody stools
  • Fever
  • Bladder disorders
  • Poor response to conventional treatment
  • Abnormal exam

Additionally, these articles state that about 25% of functional constipation problems may persist into adulthood.  Among the patients who respond poorly to treatment, constipation, especially if associated with soiling (aka. encopresis), can be very detrimental for obvious social reasons.  This group of patients can be very challenging.  Many of the patients do not perceive the problem to be as severe as their parents and may be unwilling to work on fixing the problem.

Clinical experience has been that younger children respond better than older children. Perhaps, this is due to a greater ease of imposing a specific treatment plan in younger children along with the fact that the physiological and behavioral changes associated with chronic constipation are not as well-established.

Other pertinent aspects of treatment and diagnosis include the following:

Abdominal xrays are not very helpful (JPGN 2010; 51: 155.) and should mainly be reserved for those in whom a rectal examination cannot adequately be performed, such as very uncooperative patients, and in patients with concerns about abuse (or concerns about psychologic impact of exam).

Also, despite earlier reports of potential sacral abnormalities in children with chronic constipation or non-retentive soiling, a fairly large prospective MRI study (J Pediatr 2010; 156: 461-5) (n=158) found that only 3% had lumbar sacral abnormalities and none required neurosurgery (1 with spina bifida occulta, 3 with terminal filum lipomas).

In addition to the scholarly references below, some useful practical sources of information can be identified by going to my office website, http://www.gicareforkids.com and clicking “constipation.”

Additional references:

  • -JPGN 2011;52: 574.  n=117.  Describes outcome with placement of a cecostomy/appendicostomy for irrigations of colon.  69% success with antegrade enemas.
  • -Gastroenterology 2009; 137: 1963. Increased rectal compliance not associated with treatment response.
  • -J Pediatr 2009; 154: 258. Constipation associated with 3-fold increase in health utilization/cost.
  • -Clin Gastro Hep 2009; 7: 20. Review of complications associated with constipation in adults.
  • -Pediatrics 2008; 121: e1334. In this study, behavioral therapy was ineffective in treating childhood constipation.
  • -JPGN 2007; 44: 5.  Review of nonretentive fecal incontinence.
  • -J Pediatr 2006; 148: 62. Higher compliance is noted in children with functional fecal retention/encopresis; thus, larger stool volume need to reach intrarectal pressure of the urge to defecate.
  • -J Pediatr 2005; 147: 700-04.  69% of infants with constipation recovered within 6 months (then 15% relapsed).
  • -Gastrointestinal Endoscopy 2004;  60(1):39–43.  A new technique for management of intractable constipation in children: percutaneous endoscopic colostomy of the left colon
  • -JPGN 2004; 38: 75.  Colostomy in 10 children with intractable constipation.
  • -J Clin Gastro 2003; 36: 386-389.  Safety of stimulants for long-term use.
  • -Am J Gastro 2005; 100: 232-242. Myths about constipation. Stimulants have not been proven to cause a “cathartic colon”
  • -JPGN 2004; 39: 448. review
  • -J Peds 2004; 145: 409. 8/88 patients with intractable constipation with spinal cord lesions (6 with tethered cords). 6/7 better p surgery. Intractable was defined as  <2BMs/week x 3 months despite laxative treatment. Only one patient had physical exam finding.  This was a retrospective study.
  • -Gastroenterology 2003; 125: 357. Long-term constipation followup.  One-third had persistent constipation; 60% better at 1 year. (tertiary referral group)
  • -Pediatrics 2004; 113: 1753 & e520. When constipation & toileting difficulties both occur, constipation usually precedes toileting problems.
  • -NEJM 2003; 349: 1360.  Review.
  • -Arch Pediatr Adolesc Med 1999; 153: 377.  Digital exam  performed in only 23% at time of referral to specialist.