Achieving Social Bowel Continence in Children with Hypermotility After

Achieving Social Bowel Contact Hours Continence in Children With Hypermotility After Repair of Anorectal Malformations and Hirschsprung

Jennifer Kreiss, MN, PCPNP-BC, Monica Holder, RN, BSN, CPN, Patricia Kern, RN, BSN, CPN, and Kristina Kneis, RD

Abstract: Children presenting to the Pediatric Colorectal Bowel disease are at risk of fecal incontinence, with overall Management clinic with soiling after surgical repair of anorectal incontinence rates as high as 25% in anorectal malfor- malformations or Hirschsprung can be categorized into two groups: mations (Bischoff et al., 2009; Kaul et al., 2011). Compre- Most are constipated and managed with laxatives and/or enemas, hensive bowel management has been shown to improve whereas the second subset has frequent loose stools. This second outcomes in fecal incontinence (Bischoff et al., 2009). group, children with multiple loose stools, presents a unique chal- lenge for the achievement of social bowel continence. We present Nearly all practitioners working in pediatric surgery will three case studies illustrating various clinical presentations of incon- have encountered children with fecal incontinence as tinence with loose stools, along with dietary and pharmacologic an outcome of colorectal repair. Most of these children management strategies and a treatment algorithm. Children who are constipated and are optimized for social bowel con- soil with loose stools can achieve social continence using a combina- tinence with laxative or enema therapy. More rare, and tion approach using toileting supports, diet manipulation, fiber supplementation, medications, and small-volume enemas. often more challenging, are the children with hypermotility and frequent loose stools (see definition of hyper- Key Words: anorectal malformation, antidiarrheals, bowel management, Hirschsprung, hypermotility, imperforate anus motility below). Social continence can be more challenging to achieve for children in the hypermotile group. ecal incontinence is a devastating condition that adversely affects quality of life in children, resulting Definitions, and Inclusion and Exclusion Criteria F in increased rates of school absence and failure, Many practitioners rely on colonic manometry with disability, and psychosocial comorbidities. Children with the measurement of high-amplitude propagating con- congenital anorectal malformations and Hirschsprung tractions to establish the diagnosis of hypermotility, but for the purpose of this article, hypermotility is de- Jennifer Kreiss, MN, PCPNP-BC fined as having greater than four bowel movements in Seattle Children's Hospital, Seattle, WA. Monica Holder, RN, BSN, CPN a 24-hour period and having a nondilated, spastic, or The Colorectal Center for Children, Cincinnati Children's short colon per contrast enema. Hospital, Cincinnati, OH. Included in this article are children with surgically Patricia Kern, RN, BSN, CPN repaired anorectal malformations and surgically repaired The Colorectal Center for Children, Cincinnati Children's Hirschsprung disease. Excluded from this article are Hospital, Cincinnati, OH. Kristina Kneis, RD patients with small bowel loss resulting in short The Colorectal Center for Children, Cincinnati Children's bowel syndrome, those with inflammatory bowel dis- Hospital, Cincinnati, OH. ease, and children on tube feedings. We also excluded The authors have declared no conflict of interest. children with functional constipation and fecal inconti- Correspondence: Jennifer Kreiss, MN, PCPNP-BC, Seattle nence who do not otherwise meet the criteria of hav- Children's Hospital Reconstructive Pelvic Medicine, Seattle, WA. ing Hirschsprung or anorectal malformations. The E-mail: [email protected] treatment algorithm included here may be of benefit DOI: 10.1097/JPS.0000000000000181 to some of these and other populations not specifically

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Copyright © 2018 American Pediatric Surgical Nursing Association, Inc. Unauthorized reproduction of this article is prohibited. included in our target population. Social bowel continence ganglia in the cecum and ileum; however, ganglia are is defined as cleanliness without bowel accidents with the abnormally large. ability to wear regular underwear. Many children with hypermotility do not have voluntary bowel continence Recommendations and thus rely on a combination of dietary manipulation, 1. Small-volume saline enemas (200 ml) rectally twice a day 2. Cholestyramine 2 g orally three times a day medications, and small-volume irrigations or enemas to 3. Loperamide 4 mg PO once a day (midday) achieve social bowel continence. The goals of bowel 4. Loperamide 6 mg PO twice a day (a.m./p.m.) management in this population are defined as fewer 5. Lomotil (diphenoxylate) 0.75 mg PO TID bowel movements in a 24-hour period, decreased acci- 6. Metronidazole 500 mg PO TID Â 7 days 1 week per dents, and improved social continence and quality of month for overgrowth suppression 7. Skin barrier cream as needed for perianal breakdown life as reported by the child and family (Rawashdeh et al., 2012). The following three case studies illustrate varying presentations of hypermotility with treatment Follow-up By family report, K. L. has had zero episodes of en- plans to improve social continence. Please note that teritis and zero hospitalizations on his current bowel this is a case review only, not a study. Institutional re- program. His stools have decreased to three to four view board approval was not obtained or required. times per day. Quality of life significantly improved by CASE STUDY 1 family's definition. K. L. is a 10-year-old adopted Native American boy CASE STUDY 2 diagnosed with total colonic Hirschsprung disease A. H. is a now a 14-year old male adolescent with total in early infancy. At 1 week old, he had a diverting loop colonic Hirschsprung disease. His original surgical re- ileostomy. At the age of 5 months, he underwent ap- pair included a Duhamel ileorectal pull-through at the pendectomy and multiple leveling biopsies with transi- age of 11 months. He was seen and hospitalized at the tion zone atthe ileocecal valve with total colectomy age of 9 years for recurrent symptoms of enterocolitis: with Soave pull-through of the terminal ileum (straight abdominal pain, nausea, vomiting after pull-through, ileoanal anastomosis). treated with hospitalization, nasogastric tube, nothing Additional History by mouth, intravenous hydration, and antibiotics. He K. L.'s additional history was as follows: fetal alco- had three hospitalizations for enterocolitis and an addi- hol syndrome, neurodevelopmental delays, ASD (atrial tional two hospitalizations for adhesive small bowel ob- septal defect) repaired at the age of 5 years, lactose in- struction. At presentation, he was managed with daily tolerance, and recurrent enteritis with hospitalizations rectal irrigations to decrease further enteritis episodes. requiring intravenous antibiotics and total parenteral Workup nutrition. With illness, he developed vomiting with ab- Examination under anesthesia revealed normal den- dominal distention and liquid stools greater than 10 times tate line with normal anal canal. The anus was widely per day. He required multiple hospital admissions for patent with no stenosis or stricture. The Duhamel pouch dehydration during illness episodes. K. L. was seen in was intact. Rectal biopsy with ganglion cells was done bowel management program at the age of 7 years. He by a pathologic review. A normal acetylcholinesterase was fully incontinent of stool with explosive diarrhea and calretinin staining pattern was found. There were 6–10 times per day. He had intermittent gaseous distention. no hypertrophic nerves. Workup Recommendations Contrast enema was normal—no stricture or dilation. Because of his recurrent symptoms of enterocolitis, There was no significant stool burden. The workup was he underwent a revision of his pull-through to remove consistent with ileoanal anastomosis. Examination under his Duhamel pouch and convert him to an ileoanal anesthesia with majority of the dentate line was not estab- anastomosis. The distal 8 centimeters of the ileum lished. The anus was in a closed position with moderate underwent tapering. contracture found using a Pena muscle stimulator. Dig- ital examination revealed no stricture or obstruction. 1. Loperamide by mouth and an enema before bedtime consisting of 300 ml of normal saline and 5 ml Pathologic Review of glycerin. Aganglionosis was present from the distal rectum to 2. It was recommended that he adhere to a constipating the ascending colon. There was a normal distribution of diet with fiber and cholestyramine; however, A. H. did

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Copyright © 2018 American Pediatric Surgical Nursing Association, Inc. Unauthorized reproduction of this article is prohibited. not tolerate the fiber or cholestyramine because of Workup texture and was not compliant with the constipating Contrast enema revealed “small segment of colon ver- diet. Fortunately, the oral loperamide and small-volume ” enema at bedtime kept him clean for a long period sus dilated terminal ileum: unable to differentiate. No sig- with improved quality of life as reported by the child nificant stool burden was found as per x-ray results. and his family. Recommendations Follow-up 1. Small-volume daily rectal enema (200-ml saline plus In a short term, after revision and bowel manage- 10-ml glycerin) ment, he was stooling four to five times per day with 2. Citrucel fiber, one tablespoon (2 g) three times per day with meals control and has reported one loose stool accident occa- 3. Loperamide, 2 mg by mouth once a day (30 minutes sionally at night while sleeping. He no longer needed before breakfast) daily irrigations. At the last visit, he has not wanted 4. Loperamide, 1 mg by mouth twice a day (30 minutes be- parental help with enema, so he stopped the nightly fore lunch, 30 minutes before dinner) enema and continued on oral loperamide with the addi- 5. Lomotil (diphenoxylate) 1 mg by mouth twice a day 6. Diet considerations: low sugar; high in soluble fiber; tion of Lomotil. Lomotil was started at 5 mg by mouth avoid raw fruits and vegetables; avoid spicy or greasy and increased to the maximum daily dose (see Figure 1). foods. Without enemas, he experienced more stooling accidents 7. Skin barrier cream as needed for perianal skin during his sleep but stayed clean throughout the day. breakdown The family asked about an anal irrigation system, Follow-up which is an enema kit with a hand pump manufactured By family report, stools have decreased to two to for independence with anal washouts. The hope was four times per day. Quality of life significantly improved that this could provide A. H. with privacy and indepen- by family's definition. dence in administering his enemas without requiring further surgery (such as a Malone neoappendicostomy Next Steps categorizable channel or a tube cecostomy). After dis- Per medication algorithm, increase Lomotil as needed cussing this with the team, the pressure of the system with the goal of no stooling between enemas. was tested. The consensus was, if used, to use with These three cases illustrate the multiple medication caution, as there are no data to support safe use in and enema adjustments needed to find a regimen that this population when irrigating the ileum rather than works for a child and his or her family, along with the the colon. complex and refractory nature of hypermotility and Further Workup the range of treatments attempted to improve social A. H. next had a contrast study that showed inflam- continence outcomes. mation of his intestine. On the basis of this and recent MEDICATIONS history of several episodes of enterocolitis and bacterial overgrowth, a 2-week trial of Proctofoam was prescribed, Many medications reported in the adult literature have which did not resolve his symptoms. Next, Xifaxan shown effectiveness in slowing or reducing loose stools 200 mg three times a day was tried in an effort to treat (Ehrenpreis, Chang, & Eichenwald, 2007). It is unclear the inflammation and resolve symptoms. We have found if good results in adult populations translate to pediatric this successful in other patients with similar symptoms. populations. There is a remarkable absence of pediatric studies in the literature; therefore, it is imperative to CASE STUDY 3 conduct more pediatric research and translate and dis- seminate findings. See the medication table (Table 1) C. C. is a 3-year-old boy adopted from China with repaired for medications found to be the most useful with these “ ” anal atresia, complicated by a large amount of bowel cases. Thickeners such as fibers and pectin help pro- removed during original operative repair. vide bulk and substance to liquid stools, allowing for Additional History fewer stools of a denser consistency and reducing over- Magnetic Resonance Imaging (MRI) showed a teth- all number of stools (Markland et al., 2015). Again citing ered cord, which required subsequent surgical tethered adult literature, decreased intestinal motility, decreased cord release. C. C. was fully incontinent of stool with frequency, and more formed stools help improve conti- a severe diaper rash. His mother reported, “He stools nence (Scarlett, 2004). Loperamide and diphenoxylate nearly constantly, sometimes liquid and other times have both been shown to reduce diarrhea and increase more pasty.” anal sphincter tone (Hanauer, 2008; Sze & Hobbs,

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Table 1: Medication Table Medication Mechanism of Action Starting Dose Titrating Dose Maximum Dose How Supplied Comments

Fiber supplements Reduced transit time, increased 1 tablespoon (1 tablespoon Increase by 1 tablespoon 3–4 tablespoons a day Pectin in powder • Dissolve powder in only 2–3ozoffluidand □ Pectin rates of defecation/stool equals 2 g) 2Â aday aday as tolerated form only drink quickly before it gels. □ Citrucel frequency (an increase in Citrucel in powder • May sprinkle on a small amount of any food stool weight is not a form also avail (1–2 tablespoons). Make sure the entire beneficial physiological able as a fiber amount of food is ingested. effect per se; it needs to be gummy but • Gummies have been found to be successful associated with a change in usually not as in a very small amount of patients and defecation frequency)a effective 2–3 gummies should be used for each dose. • 100% water-soluble fiber supplement is the most successful.

Imodium/Loperamide Acts directly on circular and 0.8 mg/kg per day in 0.8–0.24/kg per day The maximum dose • 2-mg tablet • Take 1 hour before meals and/or at bedtime longitudinal intestinal 1–2 divided doses Increase slowly by used at our institution • 1mg/5-mlliquid • Administration times can be tailored to when muscles, through the opioid 1mgatatime. is 0.24. • 1 mg/7.5-ml liquid the patient's accidents most often occur. receptor, to inhibit peristalsis • Divided doses are recommended but can be and prolong transit time; given all at once depending on when the reduces fecal volume, patient's accidents most often occur. increases viscosity, and • Therehavebeenlimitedstudiesonusing diminishes fluid and higher doses: 0.5–1.0 mg/kg per day electrolyte loss; shows □Cardiac arrhythmias noted in doses higher antisecretory activity. than recommended. Loperamide increases tone • Be aware that liquid contains sugar, which on the anal sphincter.b can contribute to hypermotility and accidents. • Can cause drowsiness and dizziness, but thesesymptomsmaysubsideoncethebody adjusts to the medication. • Keep hydrated.

Lomotil/diphenoxylate Acts directly on circular and Children 2–12 years old: Manufacturer's recommendations: 5-mg tablets • Give with food. and atropine longitudinal intestinal muscles, 0.3–0.4 mg/kg per day in <2 years: not recommended 1mg/2-mlliquid • Only liquid is recommended for children through the opioid receptor, four divided doses—to 2years(11–14 kg): 1.5–3 ml four times a day under the age of 13 years. to inhibit peristalsis and start at the lowest dose, 3years(12–16 kg): 2–3 ml four times a day • Be aware that the liquid formation contains prolong transit time; reduces give one of the four doses 4years(14–20 kg): 2–4 ml four times a day sugar and may contribute to hypermotility/ fecal volume, increases per day. 5years(16–23 kg): 2.5–4.5 ml four times a day accidents. viscosity, and diminishes fluid 6–8years(17–32 kg): 2.5–5 ml four times a day • If chronic diarrhea does not improve and electrolyte loss; shows 9–12 years (23–55 kg): 3.5–5mlfourtimesaday within 10 days at maximum daily doses, antisecretory activity. diphenoxylate is not likely to be effective. • Loperamide increases tone Adults (13 years and above): Increase by 5 mg per day, 5 mg per dose, not to su 3 Issue on the anal sphincter.b 5mgoncedaily exceed 20 mg per day in four divided doses.

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Table 1: Medication Table, Continued Medication Mechanism of Action Starting Dose Titrating Dose Maximum Dose How Supplied Comments Cholestyramine: Forms a nonabsorbable complex 240 mg/kg per day Increase frequency of 8gperday Granules • Mix in 2–6 oz of noncarbonated beverage, resin/Questran with bile acids in the intestine, In three divided doses, starting dose to 2Â a 4-g packets drink quickly. releasing chloride ions in give one dose per day day, 3Â aday,and Multidose powder • Do not ingest in powder form. the process; inhibits to start. then may titrate dose 4 g/scoop • Do not hold in mouth for a prolonged period; enterohepatic reuptake of up as tolerated. may cause tooth discoloration or enamel decay. intestinal bile salts and • Peak effect: 21 days thereby increases the fecal • Give with meals. loss of bile salt-bound • May be divided in two, three, or four doses low-density lipoprotein per day. cholesterol. • Administer other drugs including vitamins or mineral supplements at least 1 hour before or at least 4–6 hours after cholestyramine. • May decrease the absorption of folic acid, calcium, fat-soluble vitamins (ADEK) and iron. Therefore, baseline labs are needed and recommend monitoring while taking. May need supplementation.

Luvos This is a pure natural product 1–2 teaspoons, twice daily May use a third “Several teaspoons” Powder (caplets) □Adult dosing available only made from a stone, loess, teaspoon every day found in the earth. Mechanism of action is unclear and not evaluated by the FDA.

Levsin/Hyoscyamine Bowel antispasmotic used for 0.125 mg 1–2 tablets every 4 hours Maximum of 12 tablets Tablets • Half-life: 2–3.5 hours reduction of symptoms in Half tablet twice a day in 24 hours Elixir colitis and irritable bowel Extended-release syndrome. tablets aFood and Drug Administration (FDA) Dietary Fiber Guidance and Its Impact on the Food Industry. Intertek Group plc. December 2, 2016. Retrieved from http://www.intertek.com/blog/2016-12-02-fda/. bCCHMC Formulary of Medications. Lexicomp.l. Retrieved from http://www.crlonline.com/lco/action/doc/retrieve/docid/chicin_f/263296. • su 3 Issue 83 2009). Cholestyramine is also a useful adjunct for its records what the patient eats, when they eat, and symp- ability to reduce stool frequency, improve anal sphinc- toms can be very helpful in determining which foods a ter pressures, and thicken stool (Remes-Troche, Ozturk, patient tolerates and which foods cause symptoms to Philips, Stessman, & Rao, 2008). worsen. It is recommended to work with a registered NUTRITIONAL CONSIDERATIONS dietitian on an individualized nutrition plan optimized for improved individual outcomes. In practice, we have found treating the child's diarrhea, reintroducing foods slowly, and increasing soluble fiber TREATMENT ALGORITHM NOTATION in the diet to be beneficial for children with hypermotility. Before Algorithm Diarrhea Recommendations For all patients, a water-soluble contrast enema is The following recommendations can help relieve recommended to determine if there is stricture or any diarrhea (Academy of Nutrition and Dietetics, 2017): anatomical problem contributing to hypermotility. Be- Drink plenty of fluids to avoid dehydration. fore medical management specifically for Hirschsprung, Avoid drinks that are high in sugar such as juices an examination under anesthesia is recommended to and sodas. confirm presence or absence of the dentate line. Eat smaller, more frequent meals instead of three large meals. After Algorithm Avoid spicy foods if they make symptoms worse. If at any time during treatment modalities, as outlined Avoid foods high in fat, fiber, and added sugar. Avoid foods that are really hot or really cold. in the algorithm, you suspect symptoms of inflammation, Avoid fried, greasy foods. consider further workup to confirm followed by treat- Avoid sugar alcohols. ment with anti-inflammatories if indicated. Similarly, if Avoid raw fruits and raw vegetables. bacterial overgrowth is concerning, consider using an Avoid food and drinks with caffeine. appropriate antibiotic therapy.

The BRAT diet is no longer recommended when children experience diarrhea because it is not consid- CONCLUSION ered a balanced diet and is low in calories (American Hypermotility is a devastating condition, which adversely Academy of Pediatrics Committee on Nutrition, 2014; affects quality of life for the incontinent child and his or Duro & Duggan, 2007). her family. The group of children with hypermotility is Reintroducing Foods a smaller population of bowel management patients Once diarrhea improves, slowly add foods back but can be more challenging to manage. It is important into the diet. Introduce one new food at a time. If stool to fully evaluate the child to address underlying causes output increases after eating a newly introduced food, for ongoing symptoms. Each case presents with unique temporarily eliminate that food and continue introduc- concerns that require individualized treatment inter- ing new foods while monitoring for tolerance. ventions. A bowel management plan that is manageable by one family may be completely unacceptable to an- Increasing Soluble Fiber other family; thus, individualizing a strategy is essential. Soluble fibers can cause gel formation leading to de- The treatment recommendations are offered as a guide layed gastric emptying and an increase in transit time when creating the care plan for the hypermotile child. (Groff, Gropper, & Smith, 2009). Pectin is commonly An effective bowel management regimen to minimize used to help manage hypermotility as it forms a viscous the number of daily bowel movements and number of gel within the gastrointestinal tract causing a delay in bowel accidents related to hypermotility is the goal to gastric emptying. In practice, pectin is added to for- improve quality of life. This plan is enhanced using a mula or liquids up to 3% of the total volume (Wessel multimodal approach with diet, fiber, and medications & Kocoshis, 2007). Slowly increasing food sources of to achieve decreased symptoms and improved quality soluble fiber in the diet such as oats, barley, citrus fruits, of life as defined by the patient and his or her family. apples, and legumes can also be beneficial in managing fecal incontinence (Colavita & Andy, 2016). References Everyone Tolerates Foods Differently Academy of Nutrition & Dietetics. (2017). Pediatric nutrition It is important to note that not everyone tolerates care manual: Diarrhea. Retrieved from https://www. nutritioncaremanual.org/topic.cfm?ncmcategory_ id= food the same way. What works for one child may 13&lv1=144625&Iv2=14476 8&ncm toc id=144768&ncm not work for another. Keeping a food journal that heading=Nutrition%20Care

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Copyright © 2018 American Pediatric Surgical Nursing Association, Inc. Unauthorized reproduction of this article is prohibited. Kleinman,R.,&Greer,F.R.(AmericanAcademyofPediatrics after surgery for Hirschsprung disease. Journal of Pediatric Committee on Nutrition. (2014). Oral therapy for acute Gastroenterology and Nutrition, 52(4), 433–436. diarrhea.InPediatric nutrition (7th ed. pp. 724). Elk Grove Markland,A.D.,Burgio,K.L.,Whitehead,W.E.,Richter,H.E., Village, IL: American Academy of Pediatrics. Wilcox,C.M.,Redden,D.T.,… Goode, P. S. (2015). Bischoff, A., Levitt, M. A., Bauer, C., Jackson, L., Holder, M., & Loperamide versus psyllium fiber for treatment of fecal in- Peña, A. (2009). Treatment of fecal incontinence with a continence: The fecal incontinence prescription (Rx) man- comprehensive bowel management program. Journal of agement (FIRM) randomized clinical trial. Diseases of the Pediatric Surgery, 44(6), 1278–1284. Colon and Rectum, 58(10), 983–993. Colavita, K., & Andy, U. U. (2016). Role of diet in fecal incon- Rawashdeh, Y. F., Austin, P., Siggaard, C., Bauer, S. B., Franco, I., tinence: A systematic review of the literature. International de Jong, T. P., … International Children's Continence Urogynecology Journal, 27, 1805–1810. Society. (2012). International Children's Continence Duro, D., Duggan, C. (2007). The BRAT diet for acute diarrhea Society's recommendations for therapeutic intervention in children: Should it be used. Practical Gastroenterology, in congenital neuropathic bladder and bowel dysfunction – 51. Retrieved from https:(/med.virginia.edu/ginutrition/ in children. Neurology and Urodynamics, 31(5), 615 620. wpcontent u loads sites 199 2015 11 DuroArticle-June-07. df. Remes-Troche,J.M.,Ozturk,R.,Philips,C.,Stessman,M.,& — Ehrenpreis, E. D., Chang, D., & Eichenwald, E. (2007). Phar- Rao, S. S. (2008). Cholestyramine A useful adjunct for macology for fecal incontinence: A review. Diseases of the the treatment of patients with fecal incontinence. Interna- – Colon and Rectum, 50(5), 641–649. tional Journal of Colorectal Diseases, 23(2), 189 194. Groff,J.L.,Gropper,S.S.,&Smith,J.L.(2009).Advanced nutri- Scarlett, Y. (2004). Medical management of fecal incontinence. – tion and human metabolism (5th ed. pp. 113–114). Gastroenterology, 126,S55 S63. Wadsworth: Cengage Learning. Sze,E.H.,&Hobbs,G.(2009).Efficacyofmethylcelluloseand Hanauer, S. B. (2008). The role of loperamide in gastrointestinal loperamide in managing fecal incontinence. Acta Obstetricia et disorders. Reviews in Gastroenterological Disorders,8(1), 15–20. Gynecologica, 88(7), 766–771. Kaul, A., Garza, J. M., Connor, F. L., Cocjin, J. T., Flores, A. F., Wessel,J.J.,&Kocoshis,S.A.(2007).Nutritionalmanagement Hyman, P. E., & Di Lorenzo, C. (2011). Colonic hyperactiv- of infants with short bowel syndrome. Seminars in Perina- ity results in frequent fecal soiling in a subset of children tology, 31(2), 104–111.

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