Paediatric Stoma Care Re

Paediatric stoma care Global best practice guidelines for neonates, children and teenagers

These best practice guidelines governing paediatric stoma care are presented in two sections. The first section highlights the clinical aspects of paediatric stoma care. The second section addresses the psychosocial aspects of care, including stoma education and the emotional impact of a stoma on this patient group. The guidelines also include a glossary where you can find definitions for many of the terms used in the guidelines, and a list of additional resources that might prove helpful in treating this patient group. The guidelines cover the full spectrum of paediatric age groups, from neonates to teenagers.

Coloplast is the proud sponsor of the ‘Global paediatric stoma care best practice guidelines, and has facilitated the process of creating this document. All content has been developed exclusively by the Global Paediatric Stoma Nurses Advisory Board (GPSNAB) with no involvement from Coloplast.

Paediatric stoma care Global best practice guidelines for neonates, children and teenagers

May 2019, Third edition

Supported by Content

Section A

Clinical aspects of paediatric stoma care

Chapter 1 Clinical aspects of paediatric stoma care ...... 6 Chapter 2 Common pathologies and indications for a stoma in neonates and children ...... 8 Chapter 3 The types of stomas observed in paediatrics ...... 12 Chapter 4 Skin characteristics of premature neonates, neonates and children ...... 14 Chapter 5 Stoma site marking ...... 14 Chapter 5 The basics of stoma care in neonates and children ...... 16 Chapter 6 Paediatric stoma products and accessories ...... 24 Paediatric stoma care Chapter 7 Recognising, preventing and managing stoma, peristomal skin and systemic complications ...... 30 Global best practice guidelines for Chapter 8 Perianal skin breakdown and diaper dermatitis post-stoma closure ...... 40 neonates, children and teenagers Chapter 9 Anal dilation, incision and scar care management ...... 43

Appendix Educational tools references ...... 44

These best practice guidelines governing paediatric stoma care are presented in two sections. The first section highlights the clinical aspects of paediatric stoma care. The second section addresses Section B the psychosocial aspects of care, including stoma education and the emotional impact of a stoma on this patient group. The guidelines also include a glossary where you can find definitions for many Best practice guidelines for the psychosocial of the terms used in the guidelines, and a list of additional resources that might prove helpful in aspect of paediatric stoma care treating this patient group. The guidelines cover the full spectrum of paediatric age groups, from neonates to teenagers.

Chapter 1 Best practice guidelines for the psychosocial aspect of paediatric stoma care . . . . .47 Coloplast is the proud sponsor of the ‘Global paediatric stoma care best practice guidelines, and has Chapter 2 Developing a therapeutic relationship with the child and family ...... 48 facilitated the process of creating this document. All content has been developed exclusively by the Chapter 3 Adjusting stoma care education to meet the needs of the child and family ...... 49 Global Paediatric Stoma Nurses Advisory Board (GPSNAB) with no involvement from Coloplast. Chapter 4 The impact of stoma surgery on the child and family ...... 56 Chapter 5 Daily activities with a stoma ...... 66

Glossary ...... 68

3 Introduction

People may be surprised to learn that children, babies the characteristics of neonatal skin and stoma care – and even premature neonates can have a stoma. to child and family education and the emotional im- Paediatric stoma care nursing is still a relatively pact of a stoma in children. undescribed field, and little literature and research are available. Many stoma care nurses working with Paediatric stoma care is a science, but it is also an art adults say they would not be comfortable and confi- that clinicians acquire over time. This expert group is dent caring for the paediatric population. dedicated to sharing the fruit of decades of experience as paediatric stoma nurses, to support health- In order to provide more information about this area, care professionals and ultimately improve the quality we have brought together an international group of of life for neonates, children and teenagers with a The members of the Global Paediatric Stoma Nurses Advisory Board (GPSNAB) paediatric stoma care experts – the Global Paediatric stoma and their families. The following specialists have been involved in developing these guidelines: Stoma Nurses Advisory Board (GPSNAB) – to develop global guidelines for healthcare professionals. These It is therefore with great excitement that we present Louise Forest-Lalande RN M. Ed NSWOC (Canada) guidelines provide healthcare professionals working the Global Paediatric Stoma Care Best Practice GPSNAB Project Manager with the paediatric population with information con- Guidelines (GPSCBPG) and we hope you will find it June Amling MSN RN CNS CWON CCRN (USA) cerning the basics of this speciality. This document useful. Claire Bohr RSCN (United Kingdom) covers everything from indications for a stoma and Gail Creelman RN NSWOC WOCC(C) Canada Edith Ekkerman RPN ET CT (The Netherlands) Ester Sanchez Munoz RN SEECIR (Spain) Sophie Vercleyen RN ET (France)

Stakeholder acknowledgement The GPSNAB members acknowledge the following for their contribution in reviewing the Global Paediatric Stoma Care Best Practice Guidelines:

Astrid Ingeborg Austrheim BSN RPN ET MBA (Norway) Jane Fellows MSN, RN, CWOCN-AP (USA) Danila Maculotti ET Nurse, Wound Care Specialist (Italy) Lina Martins RN, BScN, MScN, WOCC(C) (Canada)

Purpose and scope The purpose of these guidelines is to provide a paediatric evidence-based central resource for best practice. It offers comprehensive information and recommendations for optimal stoma care delivery in the paediatric population.

The guidelines’ recommendations are based on literature and on the GPSNAB members’ experience. The guide is substantiated with references to provide credibility and evidence- based information.

4 5 Section A:

Clinical aspects of paediatric stoma care

In this first section of the guidelines, we focus on the clinical aspects of stoma care. We provide recommendations on;

• Common pathologies and indications for stomas in neonates and children. • Types of stomas observed in paediatrics. • Skin characteristics of premature neonates and children. • Stoma site marking. • The basics of stoma care in neonates and children. • Paediatric stoma care products and accessories. • Recognising, preventing and managing stoma, peristomal skin and systemic complications. • Perianal skin breakdown and diaper dermatitis post-stoma closure; and • Anal dilation, incision and scar care post-stoma closure.

At the end of this section, you will find a list of additional references, which you can consult if you’re looking for more information on these areas.

7 Section A Section A

Chapter 1: Indications for faecal stoma in neonates and children. For further information see glossary Congenital Common pathologies and indications for a stoma in neonates and children Anorectal malformation. Imperforate Cloacal exstrophy Laparoschisis anus.

Read more in the glossary It is important to familiarise yourself with the common 2016. p 174). The majority of the stoma surgeries pathologies and indications for a stoma in neonates performed in neonates and children are reversed, and children, as these are different than in adults. and the length of time with the stoma varies from a “There has been a decrease in the number of stoma few months to a few years, depending on the diagnosis, performed in childhood with advances in surgical the situation and the physician’s practice. techniques and single-stage procedures...” (McIltrot, K., Familial adenomatosis polyposis Intestinal atresia: duodenal, jejunal, Hirschsprung’s disease colonic

Acquired

Enterocolitis Necrotising enterocolitis Necrotising enterocolitis

Inflammatory bowel disease: Crohn’s, Malrotation with midgut volvulus Ulcerative colitis

8 9 Section A Section A

Indications for faecal stoma in neonates and children. For further information see glossary Indications for a urinary stoma in neonates and children. For further information see glossary Acquired Congenital

Read more in the glossary Read more in the glossary Read more in the glossary

Meconium ileus Tumour A temporary diversion (colostomy) may Cloacal exstrophy Prune Belly syndrome Bladder exstrophy be required in cases of severe perianal disease or trauma/wounds in the perianal area.

Read more in the glossary

Mitrofanoff/Monti Antegrade continence enema (MACE/ACE)

12 13 Section A Section A

Chapter 3: Chapter 4: Skin characteristics of Stoma site marking premature neonates, neonates and children

When treating the paediatric population, you need to What to be aware of Stoma site marking is another important area within When marking the stoma site, remember to take into familiarise yourself with the skin characteristics of this Any product containing alcohol should be avoided in paediatric stoma care. Healthcare professionals need consideration the child’s sporting activities, hobbies group. The skin of a premature neonate differs from premature neonates until their skin is mature enough to be aware of when such marking is required, and and clothing habits. Be sure to assess the child in that of the full-term neonate, child or adult. While to allow its use. However, infants of 37 weeks’ gesta- when it is not. For example, when an infant under- various positions. Keep in mind that children with adult skin has 15-20 cell layers, premature neonates tional age show no drug transcutaneous absorption goes stoma surgery, it is usually an emergency, and special needs (i.e. wheelchair bound) require special have just a few cell layers, sometimes two to three, and have a good skin barrier function.2 If there is a stoma marking cannot be arranged.4 However, consideration when selecting the stoma site. and sometimes none at all. Premature neonates are need to use a product such as chlorhexidine in a stoma site marking is recommended in school-age at greater risk of increased heat evaporation and solution of alcohol, the skin should be promptly and children and teenagers with elective stoma surgery. For emergency surgeries in neonates and premature trans-epidermal water loss (TEWL). The skin of a thoroughly rinsed with sterile water afterwards. It is This is to obtain the best seal in all positions.5 In case neonates, it is important that the paediatric surgeon premature neonate is highly permeable, meaning important to teach the caregivers to always check of elective surgeries, stoma site marking should also and the stoma nurse have a dialogue concerning the that products applied on their skin may be absorbed the components of any product they apply on the be considered, even for children younger than placement of the stoma. If possible, surgeons should into their system. For this reason, topical products, skin. school-aged, to ensure quality of life with the stoma. avoid placing the stoma too close to the groin or the such as liquid skin barrier, adhesive remover, skin umbilicus. For more information, see Section A, cement and benzoin should be avoided because of Research also shows that premature neonates pre- Factors impacting site selection Chapter 6 on Stoma care, pouch wear time for more the risk of systemic toxicity.1 sent a diminished cohesion between the dermis and The same site selection criteria used for adults information. the epidermis that can lead to skin tearing when applies to the paediatric population. The challenge is, Use these products only in extreme circumstances – removing the skin barrier.3 This is why any skin of course, that a smaller skin surface area is available. Stoma site marking when nothing else has worked or when the risk of barrier should ideally remain on the skin for at least Depending on the age of the child, it is recommended not using these products outweighs the risk of using 24 hours. We recommend keeping the barrier on the that one parent is present at the time of stoma site them. Always be cautious when using them on pre- skin for up to 48 hours, after which it should be marking, and that both the parent and child are Ombligo mature neonate skin. removed carefully. included in the discussion of the site. When dealing Cresta Cresta iliaca iliaca with teenagers, make sure they have realistic expectations about what to expect when it comes to the final stoma location. For all patients, when a stoma is Skin Characteristics marked, the child and family should be advised that The anatomy of the skin Anchoring of skin layers the site might be altered at the time of surgery according to intraoperative findings during the surgical procedure. Skin EPIDERMIS surface

Hair Follicle DERMIS Adult skin Sweat gland

Connective tissues SUBCUTIS Blood Veins

Premature skin

1 AWHONN, 2007 4 When an infant undergoes stoma surgery it is usually an emergency, and stoma marking cannot be arranged.» (Colwell JC & al, 2004 p.223). 2 Oranges T & al, 2015 5 Stoma site marking is, however, recommended in school-age children and teenagers with elective stoma surgery to obtain best seal in all positions. (WOCN Paediatric Ostomy 3 AWHONN, 2007 Care: Best Practice for Clinicians p. 16)

14 15 Section A Section A

Chapter 5: Use of convexity in neonates and children Care of multiple stomas According to literature, convexity should be avoided Generally speaking, multiple intestinal stomas may be in newly formed stomas.6 The stoma nurse should pouched within the same appliance.10 However, some The basics of stoma care make sure that the suture line of the stoma is healed precautions see Section A, Chapter 6, Stoma care; before using any convexity, even a flexible one. In Care of mucous fistula. in neonates and children older babies and infants, the use of a flexible convex support can help to prevent leakage of stool or urine Wear time of the stoma product under the skin protective barrier. Keep in mind that the pouch wear-time for a preterm infant is not comparable with that of an older Using a progressive convexity is recommended. For child or an adult.11 Considering that the premature babies and infants, a convexity can be built using neonate’s skin has few cell layers and no or poor hydrocolloids and barrier rings. In toddlers, convexity anchoring skin structures, the use of prolonged can be created by adding pieces of barrier supple- wear-time skin barriers can be detrimental to the Adult stoma care principles apply to neonates and Stoma care nurses should also document: ment, strips or rings to the wafer prior to applica- skin of premature neonates and neonates. It is also children. However, special attention should be given to • Reason(s) for changing the pouching system tion.7 In school age children and adolescents, a soft important to avoid any product that increases the the skin characteristics and body profile of premature • In case of leakage, the area of the skin convexity paediatric stoma product can be used, if seal between the skin and the stoma product, such neonates, neonates and children at various ages. This involved available. as cement or benzoin. Literature recommends that requires that stoma nurses always use their clinical • Reactions of the patient/parents/caregivers, i.e. more frequent pouch changes may be preferable to judgement to provide the best practice in care. level of comfort with stoma care Paediatric belts, which improve the efficiency of the ensure greater adhesion in the infant population and • Signs and symptoms of dehydration convexity, are available. If you do not have these at safeguard the infant’s health.12 The following factors must be assessed and your facility, you can either create one yourself, or documented when changing the stoma appliance: Body profile adjust an adult stoma belt to fit the child, ensuring As mentioned at the outset of the guidelines, • Stoma: size, protrusion (budded, flush or retracted Babies usually have a short abdomen that is round, the buckles on the belt do not injure the skin. little evidence is available regarding paediatric stoma below skin level), shape, colour, appearance especially at the top portion. They have skin folds in care. So be sure to incorporate available wound care • Peristomal skin: intact, macerated, red, eroded, the lower part of the abdomen near the groin, and Care of mucous fistula evidence with stoma care. It is important to consider infected, allergic dermatitis, granuloma there may be some friction between the pouch and According to literature, a mucous fistula may not that: • Muco-cutaneous junction: intact, separated the thigh when the baby is moving. These observa- require pouching, unless there is an associated • paediatric skin barriers are thinner to give them • Characteristics of effluents: tions must be taken into consideration when select- discharge, or pouching is required to protect the more flexibility, so they are less resistant to corrosive Stool: consistency, quantity, colour ing and applying a pouch to make sure that the stoma. In some cases, the fistula should be pouched stool. Urine: clear, cloudy, with mucous, odour stoma product does not interfere with the baby’s separately from the functioning stoma. This is neces- • neonates will spend most of their time in the mobility and comfort. sary if the stomas are spaced far enough apart on supine position, so their skin is in constant contact the abdomen, if a mucous fistula is present between with effluents. the distal limb of the bowel and the urinary tract.8 To Body profile prevent the risk of a urinary tract infection, a urinary The goal is to have the stoma product in place for a stoma should never be put in the same pouch as a minimum of 24 hours to prevent disrupting the skin digestive stoma. integrity due to poor anchoring structures, although with some poorly constructed stomas this may be a Literature also states that the mucous fistula may be challenge. Erosion of the skin barrier should be left uncovered within an infant’s diaper, if it is placed observed daily to make sure that it still provides an lower than the functioning stoma and there is no risk adequate peristomal skin protection. If the skin barrier of the infant handling the stoma. If the infant is is still functional, the wear-time can be prolonged up particularly active, the fistula could become irritated to three days. Diet and positioning will affect the or begin to bleed due to friction from the diaper. If wear-time. «An infant ostomy appliance should be this occurs, it may be necessary to cover the mucous able to remain intact for at least 24 hours, or up to fistula.9 When needed, the mucous fistula can be four days, with an average wear-time of two to three Baby body profile with Toddler body profile covered with a silicone dressing, a stoma cap, or with days. Wear-time decreases in premature infants, and double barreled stoma a neonate pouch. The covering can be left in place acceptable wear-time may initially be 12 to 24 for several days, until it comes off or if leakage is hours.» (WOCN Paediatric Ostomy Care p. 13) observed. Ideally, the use of a transparent stoma product is recommended, so that the mucous fistula Cutting of the stoma skin barrier opening can be assessed daily. Evidence about the size to cut the actual skin barrier in neonates and children was not found in existing literature. However, we know it is important to check the size of the stoma with each pouch change for the first few weeks after surgery, because the size and

16 17 Section A Section A

shape of the stoma may change as the oedema pouch is high, consider using a small adult drainable subsides. We are also aware that the size of the pouch. If the infant has a urinary stoma, use a drain- The route of the chyme through the intestine with or without refeeding stoma will change over time as the baby/child grows, age bag overnight. so regular measurements of the stoma are needed. Intestinal Intestinal growth The protective skin barriers available today are more Gas atrophy mucous barrier malleable and less likely to cut into the stoma. If cut It is normal for babies to produce more gas than development larger than the stoma, the peristomal skin is exposed adults. They swallow air during sucking, and assisted to the effluent, which may lead to leakage and skin ventilation produces extra air. Parents should be breakdown. Literature recommends that the stoma taught how to remove gas from the pouch. Some opening should be no more than 1/8-inch (1-2mm) in stoma pouches come with a filter. In other cases, diameter larger than the stoma diameter at skin lev- the pouch can be opened up, or a vent can be el. This is to minimise the skin’s exposure to effluent. added to the pouch to release the gas. The stoma opening should likewise be no less than equal to the stoma diameter to prevent trauma to the Rectal discharge stoma or obstruction of its opening.13 If the opening of Parents (and the child, if appropriate) should be the skin barrier leaves an area where the skin is ex- advised that it is normal to have some rectal dis- posed, we recommend using stoma paste or a ring. charge. This can be due to: • The distal bowel expelling the stool left over in it In case of a prolapsed or mushroomed stoma, it may after the stoma was surgically created; be difficult to measure the stoma base adequately. To • The distal bowel wall continuing to produce No refeeding With refeeding ensure the peristomal skin is well protected by the mucous, which is periodically expelled from the Just collection of output Intestinal growth and rectum;14 skin barrier, the stoma must be gently lifted up to microbial colonisation facilitate a correct measurement. • Diversion colitis, which is an inflammation of the Stoma non-functional bowel. This condition may cause a Dealing with a mushroomed or prolapsed stoma dark or foul-smelling rectal discharge; or14 It can also be a challenge to insert a prolapsed stoma • A loop stoma that does not divert stool completely. in a pouch without causing any trauma to the skin. In these cases, spill over from the proximal to the balance and parenteral nutrition (PN) complications, candidates will be patients who have one or more of To make this insertion easier you can: distal bowel results in stool passage from the while maximising growth. the following symptoms/characteristics: • use a skin barrier ring, either in its original shape rectum.14 or flatten and stretch it to make a wider barrier. Benefits and complications • An ileostomy or jejunostomy and a mucous fistula; This will allow the opening of the collaborative In older children, it may be necessary to irrigate the The MFR procedure comes with benefits as well as • Substantial length of bowel distal to the primary team approach skin barrier to be cut larger to rectum or mucous fistula, depending on the amount potential complications. ileostomy/jejunostomy; accommodate the prolapsed/mushroomed stoma. of mucus being produced. This is done with a fluid • Stable systemically; • cut radial slits around the opening of the skin prescribed by the doctor or stoma nurse. Benefits: • Not gained weight with optimal calories through barrier to make it easier to slip the pouch over the • Maximises absorption of nutrients and assists with enteral feeds; or mushroomed/prolapsed stoma. Then the skin Mucous fistula refeeding (MFR) reabsorption of water and electrolytes • An established enteral feeding program. barrier can be flattened down around the base of The practice of mucous fistula refeeding (MFR) is still • Decreases or eliminates the need for parenteral the stoma. controversial and practices varies from one health- nutrition (PN). The MFR technique care centre to another. Due to the risk of complica- • Stimulates intestinal activity at the distal portion of Collection of effluent: Peristomal skin cleansing tions, it is recommended that this procedure be the bowel to minimise the discrepancy in lumen • Collect effluent from proximal stoma using a Cleanse the stoma and peristomal skin using luke- implemented in specialised centres.15 It is important size between the two ends, in this way preventing drainable pouch warm water and a soft cloth. The skin should be that you familiarise yourself with the protocol in your anastomotic complications such as stricture and • Use of skin barrier paste or powder is not patted dry gently without any friction. Avoid using institution when practising MFR. Optimal care and leakage. recommended as these can become mixed with commercial wipes, as these may contain additives management of MFR is achieved by using an evidence- the effluent. that can cause skin irritation or allergies. Use a non- based, and collaborative team approach. The institu- Potential complications: • If MF is close to the proximal stoma, it can be sterile soft cloth instead. Products containing oil, tion must also have a thorough nderstanding of the • Perforation of the bowel. included in the same pouch.17 However, there is a lanolin or natural commercial oils are also discour- technique and supplies to be used. • Intolerance of refeeding. risk of the feeds going into the MF draining back aged, as they will interfere with the adhesion of the • Skin irritation around mucous fistula (MF). into the pouch unnoticed. stoma product. Definition and indications • Difficulty keeping tube/catheter secured in «MFR involves the introduction of proximal enteros- mucous fistula. Delivery of effluent: Emptying the pouch tomy effluent into the mucous fistula (distal loop), so • The initial tube/catheter should be inserted by the The pouch should be emptied when it is 1/3 full, as to mimic the complete physiological pathway that Candidates for MFR surgeon. which can be quite often in babies. This is because normal intestinal content will go through.»16 The attending paediatric surgeon is the health care • A 6-8 Fr tube (Feeding or indwelling catheter) is they evacuate a large amount of stool and their MFR is indicated for patients with short bowel professional determining whether or not the infant or advanced in the MF for a distance of ideally about pouches are small. If the frequency of emptying the syndrome (SBS) to prevent fluid and electrolyte im- child is a candidate for the MFR procedure. Typical 5 cm, depending on ease of insertion.18

18 19 Section A Section A

• The tube can sometimes be inserted up to 10 cm; Precautions: Skin breakdown is common with vesicostomies, and however, it is the paediatric surgeon who makes • Before refeeding, all patients need to have a lower the child is especially prone to fungal infections. the final decision on insertion length. gastrointestinal series to rule out stricture or Continue to use antifungal cream/powder for seven • Size of the tube may vary according to the size of obstruction of the distal bowel that would interfere days after the disappearance of clinical signs. It is the baby, the size of the MF and the consistency of with refeeding.21 important to inform parents about the clinical signs the effluent. The surgeon decides on the type and • Clearly identify the infusion pump and tubing to of infection and how to apply antifungal products. size of the tube.17 prevent errors in connecting to the wrong system • If you use an indwelling catheter, the amount of (Enteral feeds, IV) A vesicostomy usually drains continuously. The sterile water used to inflate the balloon should be • Monitor the stoma site for signs of irritation, lacer- absence of drainage may be a sign of stenosis; parents selected by the surgeon. Usually indwelling tubes ation, prolapse or necrosis.22 must be made aware of this complication and that are inflated with 1-2 ml of sterile water. • Assess and care for the skin around the they should contact the stoma nurse/physician if • Ensure that inflating the balloon does not obstruct stoma and the MF to avoid irritation or skin break- such a situation is observed. the distal bowel. down due to leakage.21 • If the tube/catheter was inserted without difficulty, • Carefully measure the effluent and monitor it for a Challenges unique to paediatrics then it can be reinserted by a stoma-trained nurse milky or undigested appearance.21 The following chart outlines some challenges that are or bedside nurse.19 • Closely monitor the infant’s weight, head unique to paediatric stoma care, as well as our recom- However, fewer complications were observed in circumference, length, stoma losses, serum mendations on how to address these challenges. facilities where only the surgeon can place or electrolytes, blood gases and liver function tests.21 replace the tube/catheter.20 • Monitor rectal output. • Check urine weekly for sodium and potassium levels. Securement of tube: • Assess for signs of intolerance such as discomfort, • A secure fixation of the tube/catheter is mandatory distension. to prevent any dislodgement. • Change the tube according to the hospital policy • Different fixation techniques can be used: and physician preference. • The tube/catheter may be secured by placing it through a stoma appliance and taping In summary, literature concludes that MFR “…is safe, it securely to the pouch. and can decrease the risk of anastomotic complica- • It can be secured between the pouch and skin tion and parenteral nutrition-related cholestasis. It barrier. If this technique is used, you need to provides both diagnostic and therapeutic value and vary the location where the tube/catheter is its use should be advocated.”18 However, stringent secured with each pouch change. This decreases guidelines need to be in place for intubation of the MF the risk of trauma to the MF. and the method of feeding delivery.23 • A third option is to use commercial fixation devices. For more information, please go to: http://policy.nshealth.ca/site_published/iwk/docu- Refeeding: ment_render.aspx?documentRender. • The refeeding rate is prescribed by the paediatric IdType=6&documentRender. surgeon/gastrointestinal doctor. Lau recommends GenericField=&documentRender.Id=50846 a rate not exceeding 6 ml/h and hypothesises that this rate helps to maintain the MF with sufficient Vesicostomies stimulation, while avoiding overloading.20 Vesicostomies are difficult stomas to pouch because of • The infusion rate is gradually increased until it their location in the very lower part of the abdomen ideally matches the total proximal output.20 (they are commonly placed in the middle of skin • Effluent is collected every 4 hours. Collections are creases). Vesicostomies are usually reversed before coordinated with handling times of the infant. the age of 2.5-3 years, so the child can be potty- 17,20 • Use a syringe to drain the stoma pouch. trained. If not reversed before the child is 4-5 years of 6 WOCN PEDIATRIC OSTOMY CARE: Best Practice for Clinicians, 2011, p. 20 7 «Convexity can be created by adding pieces of barrier supplement/strips/rings to the wafer before it is applied» (WOCN PEDIATRIC OSTOMY CARE: Best Practice for Clinicians, • The collected effluent is delivered in the MF using age, the stoma nurse may help to find a way to 2011). a syringe pump that has been programmed to contain urine. 8 WOCN Pediatric Ostomy Care: Best Practice for Clinicians p. 27 9 WOCN Pediatric Ostomy Care: Best Practice for Clinicians p. 27 deliver the effluent over the following 4 hours. 10 WOCN Pediatric Ostomy Care: Best Practice for Clinicians p. 24 11 Rogers V Managing Preemie stomas: More Than Just the Pouch JWOCN 2003:30 p. 108) Small volumes can be delivered slowly manually Vesicostomies can be managed with diapers, but 12 WOCN Paediatric Ostomy Care p. 41 17 13 WOCN Paediatric Ostomy Care p.24 by syringe. they usually cause leakage problems. To address this, 14 WOCN Pediatric Ostomy Care, p. 7 place the diaper on backwards, as the back portion 15 Richardson, 2006 16 Lau et & al, Beneficial effects of mucous fistula refeeding in necrotizing enterocolitis neonates with enterostomies. Journal of Pediatric Surgery 51 (2016) p. 1914 will extend further up over abdomen. 17 http://extcontent.covenanthealth.ca/Policy/Enterostomy_Refeeding.pdf 18 Al-Harbi et al., 1999 19 Haddock, 2015 20 Lau, 2016 21 (Al-Harbi & al Mucous refeeding in neonates with short bowel syndrome. Journal of Pediatric Surgery, Vol 34, No 7 (July), 1999: p 1100) 22 http://extcontent.covenanthealth.ca/Policy/Enterostomy_Refeeding.pdf 23 Haddock et al, 2015

20 21 Section A Section A

Challenges with faecal stomas in neonates and children Challenges with faecal stomas in neonates and children Challenges Recommendations Challenges Recommendations

Stoma close to or within intact incision If the incision is closed and no signs of infection are Refer to chapter 6. Care of multiple stomas. observed, the skin barrier can be applied over it.

The wound should be managed as any other wound according to wound care principles and covered with a dressing, e.g. a thin hydrocolloid. If there is leakage, an Multiple stomas absorbent dressing covered with a thin hydrocolloid or a transparent dressing can be used. The stoma product can be applied on top of the dressing. Skin becoming oily from oral supplements given to infants. Some children, especially those with cystic fibrosis, Stoma close or within an incision/wound may have oily skin that can interfere with stoma product adhesion. Tip: Cleanse the skin well. Put a small amount of stoma powder on the skin, and apply the pouch. The use of a Off-centre the skin barrier opening. If there is a starter medical adhesive may be necessary. Expect a shorter hole, cover it with a thin hydrocolloid dressing to pouch wear-time. prevent any exposure of the skin to effluent. Trim the skin barrier to accommodate the umbilicus.

When the baby/child is lying down, the pouch should Stoma close to umbilicus be applied with the drain opening to the side. This makes it easier to put it outside the diaper and to empty. This will also prevent the pouch lying on the Cover central IV lines to avoid contamination (e.g. with thigh and makes it easily accessible if the baby is in an a transparent dressing or a central IV line protector). incubator. Although sometimes necessary, folding the Commercial central IV lines protectors have been pouch should be avoided, as it will reduce its efficiency. developed. Stoma product and diaper: in or out? For toddlers and older children, the pouch should be applied vertically. This allows for easy emptying when the child sits on the commode. It is also helpful to Stoma close to central IV lines position the pouch vertically when a belt is used, as the belt loops on the pouch are positioned at 3 and 9 o’clock.

Size of neonates Create a customised pouching system.

Activity level of the child, crawling, jumping, playing, easy One-piece outfits, onesies, hairband, sash disengagement and accidental removal

When it is absolutely impossible to maintain a stoma product on the skin, it is recommended to protect the peristomal skin with a thick layer of zinc-oxide paste. Collect the stool with fluffy gauzes and change them when soiled. Dimethicone-based products can also be used, but in the case of neonates it is important to make sure that the skin is mature and not permeable to any noxious substance contained in the product. When the Skin level stoma opening suture line and/or skin is healed, a flexible convexity can be used. (Ref to Use of convexity in children, p.XX )

22 23 Section A Section A

Chapter 6: Product selection guide for faecal stomas Stoma products Benefits/Tips Precautions

Drainable paediatric In newborn and premature babies, one-piece Warm the skin barrier with your Paediatric stoma products one-piece pouch drainable systems are most common. hands.

and accessories Drainable newborn When flexibility is needed. No product should be heated with one-piece pouch an air dryer or external heat source. Also used with low-profile stomas. Drainable premature neonate one-piece pouch Recommended when there are too many dips and creases on the abdomen.

Today, there are more paediatric stoma products • Location of the stoma; Two-piece: available than ever before. However, the selection is • Type of stoma (Urostomy, ileostomy, • Coupling can be standard or adhesive. still limited in neonates, as well as for children with colostomy); • Pouch can be drainable or closed. high or liquid output, and/or a difficult location. For • Protruding, flat or retracted stoma; this reason, healthcare professionals working in • Proximity and functionality of other stomas; paediatrics must be imaginative and creative. Often, • Consistency and daily volume of the effluent. (In we have to create what does not exist. Here, the case of liquid stool, a urostomy pouch can be Paediatric stoma pouch Active toddlers When there is a prolapse, be careful advocacy work is important. We need to speak for used.); not to hurt the stoma when using a two-piece stoma product. neonates and children with stomas and share our • Body profile; and Skin barrier Access to a belt experiences with others in the healthcare industry. • Child’s mobility/activity. Pouch should always be applied on a This is the only way to improve quality of care Easier visualisation of the stoma. skin barrier, not directly on the skin. through creating more user-friendly products. Products containing latex should always be avoided. It should also be noted that a six-month-old baby It is simpler for children at school to change a Selecting the right stoma care product who produces a lot of stool might need a small adult two-piece bag, than to try to empty stool from a When selecting a stoma product, there are a number pouch attached to a paediatric skin barrier. It may drainable one. of factors that need to be considered: even be necessary to use an adult skin barrier, if a • Child’s age, weight and surface of the larger adhesion area is needed. abdomen; Useful when stool samples must be To prevent injuries, avoid devices collected. with hard plastic closures.

Product selection guide for urinary stomas Stoma products Benefits/Tip Precautions

One-piece urostomy pouch May be connected to Urinary pouch may be blocked with overnight bag. mucus (Ileal conduit). To prevent this, you can: Two-piece urostomy pouch May be connected to • increase fluid intake. overnight bag. • acidify urine by giving the child cranberry juice and vitamin C supplements. Citrus fruits drinks should be avoided because they have an alkaline residue once metabolised.

24 25 Section A Section A

Accessories selection guide

Removal of stoma products damaged if a remover was not used; and b) removal Stoma products Benefits/Tips Precautions In order to prevent any skin irritation or damage, cannot be postponed.24 Sprays should also be used removal of the stoma product should be done gently. with caution, as they can be detrimental to babies’ Stoma powder Used to perform crusting technique. If there is a problem removing stoma paste, Sprinkling stoma powder on the area will limit the and children’s pulmonary system. sprinkling stoma powder on it makes it easier to remove. friction/pressure needed to remove the paste or the Dries moist skin. barrier rings. The skin should be cleansed thoroughly Skin barrier starter hole Can be fixed with dabs of water. as recommended by the facility. In neonates and children, it is more convenient to use Can be mixed with stoma paste to increase a skin barrier without a starter hole. This gives more absorptive properties. Crusting technique: fix with non- Remove the pouch using a gauze and lukewarm versatility when a tube, a wound, another stoma or a alcohol liquid skin protector. water. Gently peel it off. Removal wipes containing mucous fistula is close to the stoma to be pouched. If alcohol or any other substances should be used with there is a starter hole, it can be off-centred and a thin Caution: protect the neonate’s and child’s caution in premature neonates, neonates and children, hydrocolloid dressing should be applied to make sure face to prevent inhalation of the powder. because they may contain noxious substances or no skin is in contact with stool or urine. In the case of may generate allergic reactions. Literature recom- multiple stomas, a thin hydrocolloid may be used to mends that you limit the use of adhesive remover in make a base for a custom fit product. infants to situations where: a) the epidermis would be Hydrocolloid dressing Can serve as a base for a custom fit Thin hydrocolloid is recommended. It product. should ideally stay on the skin for 24 hours.

Accessories selection guide Stoma products Benefits/Tips Precautions Thickening gel capsules/tablets Thickens watery faeces in the pouch. Bits of disposable diaper lining containing absorbent gel materials can be placed in the pouch to absorb excess liquid from the Stoma paste Residual stoma paste and hydrocolloid Avoid stoma paste containing alcohol in effluent.27 usually do not interfere with the adhesion premature neonates. of new stoma product. Cotton balls can also be placed in the Stoma paste can be put into a 5 ml syringe to pouch to absorb liquid effluent. To remove paste residue, stoma powder control the amount of paste applied on the can be sprinkled on the residual paste to skin barrier. facilitate its removal.

It is preferable to apply the stoma paste on the Mouldable ring/strip May be used to create flexible convexities, Heat with your hands. skin barrier rather than on the peristomal skin. (hydrocolloid) fill creases and skin folds or to make the This is because, when applied directly on the peristomal plane even. Caution: Warming under a radiant warmer skin, the result will be a mixture of stoma paste may overheat the barrier and damage peri- and stool if the stoma is functioning. And if this Easier to work with when pre-warmed.28 stomal skin.27 happens, you will have to clean it up and start again. Alcohol-free.

Pouch deodorizer Neutralizes odour. Not recommended for neonates and children. Hernia binder Supports parastomal hernia. Can be handmade Ref. to complications: Parastomal hernia. Section A, Much appreciated by teenagers. chapter 7, page 35

Can be homemade. Example: apply toothpaste on toilet paper and insert at the base of the pouch. Convexity Increases stoma protrusion Mucocutaneous area must be healed.

Can be created with mouldable rings or strips May cause peristomal skin pressure ulcer. of skin barriers. Use with caution in case of peristomal Stoma pouch lubricant Aids emptying the pouch. Rarely used in children. hernia.

A soft convexity paediatric stoma product can A little bit of oil can also help emptying the be used if available. pouch.

26 27 Section A Section A

Accessories selection guide Stoma products Benefits/Tips Precautions

Filter Facilitates the expulsion of gas. Liquid stool may compromise the action of the filter.

The filter needs to be protected at the time of bath/shower.

Leg bag/night drainage Leg bag can be used in the case of Check for the patency of the tubing to make collectors nephrostomy. sure that there is no obstruction to the elimination of urine.

Urinary diversions: Collects urine overnight so the child/family get a better night’s sleep.

High-output stomas: Prevents premature or accidental dislodgement of the stoma product.

Elastic barrier strips Secure the position of the skin barrier. Can be used to secure the skin barrier when swimming or doing sports.

24 WOCN Pediatric Ostomy Care, p. 42 25 WOCN, 2011 26 WOCN 2011, p.49 27 WOCN 2011, p.49 28 WOCN p. 43

28 29 Section A Section A

Chapter 7: Stoma complications Complications Description Management Precautions

Haemorrhage Blood is coming from the Consult the surgeon or the stoma Recognising, preventing and opening of the stoma. nurse urgently. managing stoma, peristomal

Persistent necrotic tissue is ob- When the fascia is affected, a second skin and systemic complications served suggesting that the fascia operation is necessary.31 is affected.

Stoma and peristomal skin complications are also observed in neonates and children, and it is imperative to know how to manage them.

Risk factors influencing stoma and peristomal complications include: • immature neonate skin; See Section A, Chapter 3. Skin characteristics of premature neonates, Total necrosis neonates and children; • underdevelopment of abdominal musculature may Read more in the glossary Total separation of the stoma at Urgent, call the surgeon. Risk of lead to peristomal hernia; the suture line. peritonitis. • poor siting and stoma construction. This is Total mucocutanous especially the case with neonates, as surgery is separation emergent and often in unfavourable conditions.

Definitions Stoma is at skin or below skin Creation of a flexible convexity, if the level and may be secondary to suture line is healed. excessive tension of the Urgent action required Child must be referred to the stoma nurse or surgeon urgently. mesentery. If the stoma is in a deep crease, use a flexible one-piece stoma product. The depth of retraction may increase when the patient is Needs review The problem can be solved easily but needs a follow-up. seated.35 When it is impossible to keep a stoma Flat or retracted stoma product on the skin and the peristomal skin cannot be protected appropriately, Related factors: Short mesentery, refer to the surgeon to know if it is pos- rapid weight gain, obesity, surgical sible to modify or reverse the stoma. technique, excessive tension in Non-urgent There is a problem needing to be addressed but not urgently. the suture at the fascia level, 36 malnutrition, immunosuppression. Depending on the length of time the stoma will be needed, closure of the stoma may solve the problem. In cases In neonates, abdominal distension of long-term stomas, re-operation may may cause this complication. be necessary.

If unable to apply pouch, protect the peristomal skin and collect the effluent with fluffy gauzes or other absorbent product.

30 31 Section A Section A

Stoma complications Stoma complications Complications Description Management Precautions Complications Description Management Precautions

Blockage • Mostly seen with ileostomies Monitor closely and seek medical advice Narrowing of the stoma at skin or Dilation or surgical revision. Check that • Less or no stool in the pouch if: fascia level. the stoma is adequately • Change of stool consistency that • symptoms aggravate; Check the cutting technique to make functioning. may be liquid • the child goes more than 8- 12 hours Usually secondary to sure that the opening is not cut too large. • Abdominal distension without stools, or; there is a change peristomal skin hyperplasia. from normal output. • Abdominal cramping • the child is vomiting. Educate parents/caregivers about • Oedema of the stoma proper cutting technique. • Nausea Modify opening of the skin barrier in • Vomiting case of stoma oedema. Refer to Hyperplasia.

May be secondary to high fibre or Abdomen massage. Warm bath. high residue food that has not been chewed enough. Dilation of the stoma. Stenosis (Urinary stoma) Irrigation of the bowel under physician’s order.

Overgrowth of the stoma tissue Optimise device adjustment to minimise Overgrowth Education. due to excessive exposure to trauma and contact with effluent. tissue may effluent.32 This occurs more bleed during the frequently in young patients and stoma hygiene those with urostomies less than Careful cleansing because of associated and stoma Read more in the glossary Abnormal connection between Conservative management if no stoma one cm wide.33 pain. product two epithelium-lined surfaces. pouch can stay on long enough: change. It is advisable to • Zinc oxide + fluffy gauze to be An inaccurate opening or ill- Treatment: Apply silver nitrate for 5 take extreme changed when soiled. fitting stoma pouch can lead to seconds. Treat once a week for 4 weeks. Overgranulation care during leakage or abrasion to the Commercial tape impregnated with • Surrounding skin can be protected these manoeu- muco-cutaneous junction. These steroid fludroxycortide can be used to with a thin hydrocolloid or a no-sting vres. can make the skin susceptible to treat the granuloma. It is ideal to apply liquid skin protector. Fistulas granuloma formation.34 under the stoma product as the pouch will adhere to the tape.

Grey, dark brown or black discol- The degree of necrosis is variable and ouration of all or part of the stoma can be assessed by passing a small, due to: lubricated glass tube into the stoma and - inadequate blood supply - exces- inspecting the mucosa with a pen light.30 Multiple fistulas sive dissection of the mesentery. This technique depends on the size of the stoma, and should be carried out - traction of the mesentery. under the supervision of the surgeon. - major oedema of the bowel. Plastic tubes can also be used ,if available. Painful ulcerations frequently as- Must be referred to the gastro- This skin Partial necrosis Stoma is dry and firm. sociated to Crohn’s disease. enterologist for systemic therapy. problem may also be Evolution: Usually the necrotic tissue debrides observed in The necrotic tissue becomes thin- spontaneously with time. As long as the Topical treatment: other body ner, sloughs and may produce an stoma is patent and healthy at the base, • Tacrolimus ointment parts (e.g., unpleasant odour. no further debridement is required. • Hydrocortisone inguinal fold). • Absorbent dressing Pyoderma gangrenosum under stoma product

Loss of epithelium, irregular borders, bleeding and pus, pain, difficulty to maintain appliance adherence.

32 33 Section A Section A

Stoma complications Stoma complications Complications Description Management Precautions Complications Description Management Precautions

Appears as white, ulcer-like mark- Check the cutting technique. Ensure there are The most common cause of Take a complete patient history. Patients at risk of ings on the stoma. Educate parents/caregivers. no sharp edges fungal infection in patients developing fungal on the skin with stomas is the over- infection: Identify and correct the cause. barrier. growth of a Candida (usually • Under antibiotic Possibly due to trauma or ill-fitting Haemostasis (gentle compression) if C. Albicans) therapy; stoma product. bleeding. Check the stoma product to make sure • Immunosuppressed. Apply stoma powder on the cut to that it fits well to prevent leakage. • Pustules or papules Also occurs as the result of very support healing. Continue the use of active toddlers. • Diffuse erythema macera- Laceration of the Peristomal skin fungal tion Prevention: the antifungal stoma infection. Papules, Thoroughly dry the skin before product seven days redness and satellites • Satellite lesions Poor cutting technique. applying the pouch. after the disappear- lesions are observed, the • Pruritus and burning sen- ance of clinical signs skin is itchy and burning. sation around the stoma. of fungal infection. After bathing with a pouch on, towel dry the skin barrier, pouch and skin Defect in the fascia that One-piece pouching system or two- Since the very well to prevent any trapping of Allergic reactions allows loops of intestine piece with a floating flange. stoma is usually moisture. sometimes result temporary, from a misuse of to protrude into the area of re-operation is accessories.38 weakness.37 Feather/petal the barrier for more usually not Use a pouch covered with fabric or flexibility. considered. cover it with a cotton lining. Aggravated by increased abdominal pressure (e.g., However, it is im- Put the pouch outside the Diaper. crying). portant to check for any signs of Topical treatment: complications, such as: Apply an antifungal cream or powder when changing the appliance. • stoma patency. • change in colour; or Make sure that the cream is well Parastomal hernia Creative hernia belts penetrated to prevent interference with • discomfort. the stoma product adhesion.

When applying antifungal powder, fix it with a dab of water or alcohol-free skin Inflammatory reaction often This can be treated in three ways: sealant. secondary to suture material. • Use of silver nitrate application(s) to granuloma(s); Antifungal powder is preferred to The granuloma may bleed and • Use of a steroid tape applied under antifungal cream. be painful. the stoma product; or • Excision of suture material with the In severe cases, the prescription of surgeon’s approval. systemic antifungals may be required.39 Suture granuloma; multiple granulomas

Partial separation of the stoma In case of leakage, fill the defect with Monitor and at the suture line, caused by: an absorbent dressing (i.e. powder, document the mixture of powder and stoma paste, evolution of the wound paste, hydrofiber, calcium separation. If • poor healing; alginate) and apply the stoma product. healing is delayed • tension; notify the sur- • infection; or The skin barrier is applied on top of geon. • surgical technique. the dressing. In some cases, a trans- Partial mucocutaneous parent dressing or a thin hydrocolloid separation product can be applied over the wound before applying the stoma product.

34 35 Section A Section A

Stoma complications Stoma complications Complications Description Management Precautions Complications Description Management Precautions

Usually allergy to Identify and eliminate the allergenic product. Allergic Protrusion of the stoma through Reduction of the prolapse. Caution: sealants, barriers, reactions sometimes the abdominal wall in a telescopic • Lay the patient down. Check the tapes, solvents, result from a misuse fashion. colour of the Allergy history • Reassure the parents /caregiver. powders, pastes or of accessories.38 prolapsed pouch fabric or Skin patch test to determine the allergen. • Use a larger pouch to contain the stoma. It should Frequent in diseases of the small stoma. materials. bowel, especially in the case of a be red-pink. If it is impossible to modify the stoma loop ileostomy. Make sure the bowel is still product, apply a layer of alcohol-free liquid You need to modify the cut of the functioning as skin protector. opening of the skin barrier by cutting Allergy Prolapse well. radial slits to enable it to slip over the Allergic reaction to one of the stoma. Important: Reseal the skin components of the stoma Avoid the use of accessories, unless barrier once it is on the skin. product. absolutely necessary. Educate the family/caregiver: Parents Usually the affected area If they are necessary, ensure they are used or caregivers must be advised to corresponds exactly to the area correctly (e.g., let the skin barrier wipe dry contact the surgeon/stoma care nurse covered by the allergenic before placing the stoma product). for reduction of the prolapse. Some component. prolapses cannot be reduced, but if the bowel is healthy and well-functioning, Cover the area affected by allergy with a that is not a problem. If surgery pre- thin hydrocolloid and apply the stoma Skin appears red, itchy, scaly sents a risk for the child, or if the child is product over it. and inflamed. booked for surgery in the near future, the prolapse may be left as is. It is For severe cases, consult with a physician for important that the family knows when Once skin sensitivity develops, possible topical steroid treatment. they should contact surgeon/stoma it may become a chronic nurse. problem.

Tip: Use powdered sugar or Xylomethazoline 1% nose spray/drops on the prolapse, and then contact the Folliculitis • Traumatic hair • Review hair and pouching removal Obviously stoma nurse/surgeon. Inflammation of hair follicles removal. technique. observed in teenagers. usually caused by staphylococ- • Shaving too closely. • Reinstruct pouching removal technique. cus aureus.39 • Excessive rubbing • Avoid blade-type razor; use of scissors is and cleansing of the recommended. Consult the surgeon urgently if: • Erythema peristomal skin. • the colour of the stoma is abnormal (Example: dark red). • Antibiotherapy. • Sometimes pustular • the stoma is not functioning. • Education. lesions • Superficial or deep

(May extend to the hair bulb).

Too large cutting of • Assess the cutting technique the skin barrier. • Education • Increase oral fluids: • acidity, Vitamin C, cranberry concentrate • Increase urine acidity

Hyperkeratosis Topical treatment: • Thickened, peristomal skin, • Soak with a solution of water and whitish to greyish vinegar (1:1). • Stoma product adherence • Soak duration: 15 to 20 minutes. issue • Thoroughly rinse with clear water. • Pain and bleeding may be • Repeat at each appliance change. observed • Vesicostomy without stoma product: once a day.

36 37 Section A Section A

Stoma complications Systemic complication

Complications Description Management Precautions Complications Signs and symptoms Management

Blood is seen in the pouch or is Local pressure. Dehydration • Crying without tears Notify the doctor, replace fluid loss intravenously present on the skin at pouch • Dry mucous membranes according to medical order: change. If superficial bleeding is not self-limited, • Sunken fontanels • Rectum: > 20 mg/kg/day apply direct pressure with cold com- • Dry diapers, Less diuresis > 1ml/kg/h • Colostomy: > 20-30 mg/kg/day Small amount of bleeding from presses.29 the stoma is normal. • Irritability • Ileostomy: > 40-50 mg/kg/day • Tachycardia Check the size of the opening of the skin Bleeding barrier and assess the application and removal of the stoma product.

Electrolyte imbalance Regular blood work (electrolytes) and supplement as Educate parents/caregivers about Observed with ileostomy/ required (IV, oral or enteral) cutting of the opening and way to put jejunostomy on and remove the stoma product.

Peristomal skin complications Complications Causes Management Precautions

Erythema with peristomal skin loss: • Crusting technique: Apply a thin layer of stoma powder followed by a layer of alcohol-free liquid skin barrier. Repeat the application 3-4 times. • Apply the stoma product as usual, with stoma paste if needed.

Erythema without peristomal skin loss: • Apply a mixture of stoma paste and stoma powder around the opening of the solid skin barrier. • Apply the stoma product.

Potential causes: • Check cutting technique. If inadequate, Make sure that 1. Use of a pre-cut opening that is re-educate the suture line is too large or cutting an opening healed before too large in the stoma product. applying a • Inform about the signs indicating that 2. Prolonged wear-time. flexible the stoma product must be changed. convexity. 3. Liquid and corrosive stools, (acid pH). • The use of a flexible convexity can 4. Flat or retracted stoma in a skin Redness, erythema help prevent leakage of stool or urine fold. under the skin protective barrier. 5. Fistula at the base of the stoma. • With or without loss • Conservative management with zinc of epithelium oxide paste and gauze if the stoma • Burning, tingling cannot be pouched. • Discomfort • In the case of a fistula or when the erythema cannot be resolved, surgery can be considered.

29 Husain & Cataldo, 2008; WOCN, 2011 30 WOCN Core Curriculum Ostomy Management, Wolter Kluwer, Phil, 2016, Ed. J Carmel, J Colwell and M. Goldberg p. 193 31 “Reoperation to resect the necrotic portion may be necessary if the bowel below the fascial level becomes necrotic and a new ostomy will need to be reconstructed.” (WOCN p. 76) 32 Sung, Kwon, Jo & Park, 2010 33 Sung et al., 2010 34 C Lyon, 2001 35 Butler, 2009; Colwell, 2004 36 Bafford&Irani, 2013; Black, 2009; Butler, 2009; Jordan & Burns, 2013 37 WOCN Core Curriculum Ostomy Management, Wolter Kluwer, Phil, 2016, Ed. J Carmel, J Colwell and M. Goldberg p. 197 38 WOCN, 2010 39 C. Lyon 2009

38 39 Section A Section A

Chapter 8: When diaper dermatitis is observed, the first step is to identify the type of diaper dermatitis. The following table describes the appearance and management of Perianal skin breakdown the different types of diaper dermatitis. and diaper dermatitis post-stoma closure

Following stoma closure the child may have loose, the soiled layer of barrier.» (Taquino, 2000) Type of diaper dermatitis Description Precautions frequent stools for various reasons: • Re-apply the cream barrier, if needed. • antibiotic use; • The baby can be left without a diaper to facilitate air Skin is red, with or without With loss of epithelium: • transanal surgery; to the excoriated area and frequent assessments. epithelium loss. • colon resection; or • Do not use baby wipes. Some brands contain 1. Lightly dust denuded skin with skin barrier stoma • the type of enteral/oral feeds. alcohol, perfumes or preservatives that may powder to absorb moisture and provide a tacky contribute to skin irritation and increase the risk surface to which a zinc oxide ointment can then In most cases, this will be temporary, but it still poses for skin sensitization.43 be applied. a concern for parents.41 When stool is mixed with • Avoid prolonged sitz baths, because they macerate 2. Apply a protective cream barrier. The skin barrier urine, the skin pH and enzyme activity increase, the skin and alter the skin barrier function. If the cream can be mixed with stoma powder to in- Contact irritant dermatitis resulting in a reduction of the normal skin flora.42 This infant is given a sitz bath, use mild soap with low pH. crease its absorption properties. 3. Dust the cream with stoma powder. breakdown in the perianal skin area needs to be • Avoid topical products containing isopropyl avoided. The goal is to keep stool away from the skin alcohol, camphor, salicylates, boric acid, baking soda Without loss of epithelium: by frequent diaper changes day and night. or benzocaine. «As a general rule, stick with prod- Apply a thick layer of skin barrier cream or a liquid ucts designed for babies. Avoid items containing bak- protective barrier. The liquid skin barrier should not Prevention and treatment of ing soda, boric acid, camphor, phenol, benzocaine, be applied more than every 24-48 hours. perianal skin breakdown diphenhydramine, or salicylates. These ingredients • Routinely protect perianal skin with a protective can be toxic for babies.» (Sparks D, 2017) skin preparation containing zinc oxide or • Antibacterial ointments are not necessary or dimethicone. «Providing an occlusive barrier can helpful for irritant diaper dermatitis, as it is not Observed in infants and children Same as for contact irritant dermatitis. protect the skin injury and promote healing». associated with an increased number of bacteria. with chronic diarrhoea. (Darmstadt & Dinulos 2000, Ghadially & al 1992) • Disposable diapers with absorbent gel materials Close follow-up with family to support them in this • Observe a rigorous hygiene. are more absorptive and keep perianal skin drier Following surgeries affecting difficult period. • Wash hands before and after performing than those without absorbent gel or cloth diapers. bowel function. perineal skin care. • Change the diaper promptly when wet or soiled to Management of diaper dermatitis decrease skin moisture and contact with urine and Since the baby’s buttocks have usually never been Chronic diaper dermatitis faecal enzymes. exposed to stool, moderate to severe diaper dermatitis • Assess perianal skin for skin irritation or infection usually occurs. Diaper dermatitis, whatever the with each diaper change, and implement therapeutic cause, is a source of great discomfort for the child, measures as soon as irritation is identified. and it represents a major challenge for the family • Cleanse the skin gently with warm water and a and caregivers. soft cloth or hold the child’s buttocks under running water. A syringe may be used to flush the The parents will need to get specific education about area. Pat skin dry, avoid rubbing. If soap is used, a diaper dermatitis. It is important to: mild and pH-neutral soap is recommended. • identify and, where possible, eliminate the cause • When the baby passes stool, only clean what is of diaper dermatitis; soiled. Do not take the residual cream barrier • put in place preventive measures; away. Frequent or vigorous removal of barrier • use appropriate treatments; product can further traumatize damaged skin. • put in place preventive and management proto- «Some barriers are thick and stay on the skin after cols in order to standardize nursing practice; and gentle cleansing. It is appropriate to remove only • educate the caregivers and families.

40 41 Section A Section A

Chapter 9: Type of diaper dermatitis Description Precautions

Diaper dermatitis Erythematous plaques + peripheral Topical antifungal cream, ointment or powder. complicated by Candida desquamation and satellite pustules. Anal dilation, incision Albicans When applying an antifungal cream, always put Skin folds are involved. a barrier cream over it since antifungal cream and scar care management has no protection properties.

«Colonisation by Candida was significant- ly more frequent in children with diaper Apply antifungal product two to three times a dermatitis as compared to those with day as prescribed. The protective barrier cream should be applied as many times as needed, but healthy skin (perianal 75% vs. 19%)» (Ferrazzini, G. et al. (2003). always on top of the antifungal product.

Pursue the antifungal treatment seven addition- C. Albicans should be considered to al days after the disappearance of visible signs Anal dilation • Where to obtain dilators if not provided; be present and pathogenic when of infection, since microscopic C.albicans may Anal dilation is a procedure often initiated two to four • How often to do the dilations; diaper dermatitis lasts for more than still be present. weeks following repair of an anorectal malformation • What size dilator to use and when to increase size three days.44 or pull-through for Hirschsprung’s disease. One of as determined by the surgeon. The formula for Caution: Liquid protective barrier should not be the most common complications following this type working out dilator size is weight x 1.3 + 7;49 used in case of fungal infection. of surgery is anastomotic stricture. This type of • Who to call if problems arise; and stricture responds well to prophylactic dilations, • Once the final size has been reached, the child which are usually done with metal or plastic dilators, should be assessed by the surgeon. or a parent’s finger. Dilations are usually performed Allergic contact dermatitis Uncommon. Identify and remove the allergen product. once or twice a day. Even after dilations are no longer required, these children should have regular, long-term follow-up. Mild erythema and desquamation. Sometimes vesicles and papules. In most cases, parents are taught to do this procedure Many suffer from constipation and/or incontinence, at home, although it has been suggested that weekly and early intervention to promote social continence dilations by the physician can produce the same out- is important for this population. Observed after contact with specific 48 allergens: come. paraben, lanoline, substances found in Incision and scar care disposable diapers, Parents need to understand the importance of doing After stoma closure, the parents must be informed detergents, etc. this procedure, even if they find it physically and about the care of the wound, signs of infection and emotionally difficult. Once shown how to perform the when they should call the stoma nurse or consult the dilation, a return demonstration by parent/caregiver surgeon. will provide them with an opportunity to build their For infants excreting high amounts of bile acids in Whatever product is used for prevention or manage- confidence and receive support if they are having dif- Some surgeons close the site of the stoma with their faeces, consider using oral or topical cholesty- ment, it is important to read the manufacturer’s ficulties. Parents also need to be aware that initially sutures, while others let the wound heal by secondary ramine, which binds to bile acids.45 Cholestyramine recommendations to make sure that the product is they may observe small amounts of bright blood, intention. The same wound care principles apply as can be applied topically as an ointment and also be applied correctly. Equally important is the use of a which is normal. The size of dilators, frequency of those for adults; however, the use of low-adherence prescribed per mouth. standardised approach by all the caregivers, while dilations, schedule for increasing sizes and desired goal dressings is recommended. The healing process is supporting the parents closely during this very size will depend on the preference of the surgeon/ usually faster in children than adults, so they may Skin barrier cream can be removed with mineral oil exhausting period. facility. present with hypertrophic scars. Parents must be to reassess the skin, usually after 48 hours or accord- informed that once the wound is closed, they should ing to clinical judgement. Keep in mind that routine For more information, please visit: This is often a two-person procedure, one to hold the massage the scar with a skin emollient or apply a complete removal of protective skin preparations is Cincinnati Children’s Colorectal Center. Instructions child and provide distraction while the other does the specialized silicone dressing. This will help to prevent not necessary, and may irritate the skin.46 For Parents Of Children After A Colostomy Closure dilation. The child is often more upset by being re- and manage hypertrophic scars. For The Management of Anorectal Malformations. strained than because of discomfort from the proce- In the case of severe skin inflammation, the use of dure. Clear instructions need to be given for the fol- hydrocortisone 1% ointment decreases the inflam- Link to https://www.cincinnatichildrens.org lowing: mation, but it is not recommended for prolonged use. It should be applied in a thin layer for no more than 2-3 days.

41 Cincinnati Children’s Colorectal Center 42 Atherton 2001, Atherton 2004, Davies & al 2006, Lin & al 2005, Scheinfield 2005, Visscher & al 2000 43 Fields & al 2006, Scheinfeld 2005 47 Rouzrokh, Khaleghnejad, Mohejerzadeh, Heydari & Molaei, 2010 44 White & al. 2003 48 Temple, Shawyer & Langer, 2012 45 WOCN Pediatric Ostomy Care: Best Practice for Clinicians p. 70 49 Lane VL, 2017.

42 43 Section A Section A

Appendix Educational tools references

American College of Surgeons “kit”: www.facs.org/ preterm neonate. J wound Care 2001 253-256 • Motta GJ. Life span changes: Implications for ostomy • Temple, S. J., Shawyer, A., & Langer, J. C. (2012). Is education/patient-education/skills- programs/osto- • Jeter KF. These special children. Menlo Park, Calif: care. Nurs Clin North Am 1987; 22(2): 333-34 daily dilatation by parents necessary after surgery my-program/pediatric-ostomy Bull Publishing, 1982 • Oranges T & al Skin Physiology of the Neonate for Hirschsprung disease and anorectal malfor- • Lau ECT & al Beneficial effects of mucous fistula and Infant: Clinical Implications. Adv Wound Care mations? Journal of Pediatric Surgery,47(1), 209- References refeeding in necrotizing enterocolitis neonates (New Rochelle). 2015 Oct 1; 4(10): 587–595. 212. doi:10.1016/j.jpedsurg.2011.10.048 • Al-Harbi & al Mucous refeeding in neonates with with enterostomies. Journal of Pediatric Surgery • Pediatric Subcommittee of the Wound, Ostomy • Weston WL & al. Diaper dermatitis: current short bowel syndrome. Journal of Pediatric 51 (2016) 1914–1916 and Continence Nurses Society, 2010 concepts. Pediatrics 1980; 66:532-6 Surgery, Vol 34, No 7 (July), 1999: pp 1100-1103 • Lalande L. et St-Vil D. Ostomies in Children • Richardson L, Banerjee S, Heike R (2006) What is • WOCN Core Curriculum Ostomy Management, • ASCN & PSNG Stoma Care Nursing Standards Ostomy Canada Spring 2001 the evidence in the practice of mucous fistula Wolters Kluwer, 2016 and Audit Tool For the Newborn to Elderly. • Landmann, Linda A., When your ostomy patient is refeeding in neonates with short bowel syndrome. • WOCN PEDIATRIC OSTOMY CARE: Best Practice • AWHONN, Neonatal Skin Care, Evidence-based an adolescent. J Enterostomal Ther 1989; 16(2): Journal of Pediatric Gastroenterology & Nutrition. for Clinicians, 2011 clinical practice guideline, 2007; 1-57 87-88 Vol 43 Issue 2, p 267 -270 • Bolinger BL. A Teenager’s Ostomy Guide. • Lane Victoria A et al. Pediatric colorectal and • Rogers V Managing Preemie stomas: More Than Links: Chicago: Hollister Inc., 1978 pelvic surgery. Case studies. CRC PRESS Taylor Just the Pouch JWOCN 2003:30:100-10 • RNAO: (http://rnao.ca/sites/rnao-ca/files/Osto- • Broadwell DC, Jackson BS. Principles of ostomy and Francis Group 2017 • Rogers, V.R. (2007.) Wound management in neo- my_Care Management.pdf) care. In: Bolinger BL. The adolescent patient. • Lask B. & al. Psychosocial sequelae of stoma nates, infants, children, and adolescents. In N.T. • Shadowbuddies.org: The Shadow Buddies St-Louis: Mosby, 1982: 532-544 surgery for inflammatory bowel disease in Browne, C.A. McComiskey, L.M.Flanigan, & P.Pie- Foundation is a children’s charity dedicated to • Cincinnati Children’s Colorectal Center. Instructions childhood. Gut. 1987 Oct;28(10):1257-60. per (Eds), Nursing care of the pediatric surgical providing support and knowledge to children with For Parents Of Children After A Colostomy Closure • Lyon C & Smith A Abdominal stomas and their patient 2nd Edition (167-181). Sudbury, MA: Jones severe illnesses and disabilities. The foundation For The Management of Anorectal Malformations. skin disorders. 2001 and Barlett Publishers accomplishes this through unique programs https://www.cincinnatichildrens.org • Lyon C & Smith A Abdominal stomas and their • Rouzrokh, M., Khaleghnejad, A. T., Mohejerzadeh, designed to enhance the lives of children and • Colwell JC & al Fecal and Urinary Diversions Man- skin disorders. Second edition 2009 L., Heydari, A., & Molaei, H. (2010). What is the adults by fostering compassion and awareness of agement Principles Mosby 2004 p 223 • Lyon C The Problem Stoma- peristomal skin most common complication after one-stage differences with a line of 31 condition-specific • Erwin-Toth P.The effect of ostomy surgery between problems June 2013 transanal pull-through in infants with “Shadow Buddy” dolls. Crafted from muslin and the ages of 6 and 12 years on psychosocial devel- • Mayo clinic, Diaper rash, 2018. https://www. Hirschsprung’s disease? Pediatric Surgery carefully researched to represent a child’s opment during childhood, adolescence, and drugs.com/mcd/diaper-rash International,26(10), 967-970. doi:10.1007/ medical or emotional condition, Shadow Buddies young adulthood. J Wound Ostomy Continence • McIltrot, K. (Ed.). (2016). Assessment and s00383-010-2648-8 offer seriously ill or medically challenged children Nurs. 1999 Mar;26(2):77-85. Management of the Pediatric Patient. In Wound, • Schaffner, A. Pediatric Ostomy Surgery J Wound the companionship of a friend “just like me.” • Fernandes JD, Machado MCR, Oliveira ZNP. Clinical Ostomy and Continence Nurses Society Core Ostomy Continence Nurs. 2010;37(5):546-548. presentation and treatment of diaper dermatitis- curriculum Wound Management (pp. 158-175). • Scheinfeld N. Diaper dermatitis: a review and brief part II] An Bras Dermatol. 2009; 84(1): 47-54 Philadelphia. survey of eruptions of the diaper area. Am J Clin • Fiers, S et Thayer, D. Management of Intractable • Mohr LD Growth and Development Issues in Dermatol.2005; 6(5): 273-81. Incontinence in Urinary and Fecal Incontinence. Adolescents With Ostomies J Wound Ostomy • Spain document: To cite the Spanish Guide using Ch 9: p. 183-189. Continence Nurs. 2012; 39(5):515-521 Vancouver style: • Forest-Lalande, L. Ostomies in Childhood : • Mohr LD. & al Adolescent Perspectives Following Cebrián Batalla ML, Guijarro González MJ, Martín Psychological Repercussions. The Link (CAET). Ostomy Surgery A Grounded Theory Study J Romero C, Martínez Cano A, Sánchez Muñoz E, April 2004 p. 10-19 Wound Ostomy Continence Nurs. 2016; Valero Cardona A. Guía de atención integral al • Garvin G Caring for Children with Ostomies. 43(5):494-498 niño ostomizado. Madrid: Coloplast Productos Pediatric Surgical Nursing. Nursing Clinics of • Mounier C. Pediatric stoma therapy. Psychological Médicos, S.A; 2018 North America. Volume 29, number 4. December care Soins Pediatr Pueric. 1996 Nov- • Sparks, D. Home Remedies: Darn that diaper 1994 p.645-654 p Dec;(173):19-22 rash, Mayo clinic, March 17, 2017 • Irving V Caring for he and protecting the skin of the

44 45 Section B:

Best practice guidelines for the psychosocial aspect of paediatric stoma care

This section presents best practice within the psychosocial aspects of paediatric stoma care. It includes recommendations concerning:

• Developing a therapeutic relationship with the child and family; • How to adjust stoma care education to meet the individual needs of the child and family; • The impact of a stoma in children and teenagers; and • How children with a stoma and their families can approach daily activities.

46 Section B 47 Section B

Chapter 1: Developing a therapeutic relationship with the child and family

One of the purposes of establishing a global set of “A therapeutic nurse-patient guidelines is to enhance and support our work with the paediatric population and enable us to establish relationship is defined as a helping a valuable, therapeutic relationship with the child and relationship that’s based on mutual family. trust and respect, the nurturing of Parents and children are confronted with both the faith and hope, being sensitive to adjustment to the stoma and the implementation of stoma care. Children will respond differently, based self and others, and assisting with on their age and developmental stage. So when the gratification of your patient’s building the therapeutic relationship with parents and children, there are a lot of factors to take into consid- physical, emotional, and spiritual eration in order to select strategies that match the Chapter 2: child and family’s situation. needs through your knowledge and skill.1“ One of your primary goals is to establish a relationship based on confidence and trust with the child and Adjusting stoma care education family, including siblings. The information you give to the family must be accurate, comprehensive and individualised, respecting their beliefs and values. to meet the needs of the child This will reinforce the trust in the relationship. and family

One of the many challenges when working in When people are in shock or denial, they are not paediatrics is adjusting our approach not only to the ready to take in new knowledge and develop new patient, but also to his/her family. This also applies skills. As much as possible, we must be sensitive to when the time comes for stoma care education. The the readiness to learn on the part of the child and education principles used with children are based on family. pedagogy, while those used for adults are based on andragogy (adult education). When planning an education session, take into consideration the following factors: Planning an education session • the developmental stage and age of the child; and Before starting any care or education session, it is • the presence of any cognitive, physical or psycho- essential that you are familiar with the child’s logical barriers to learning. condition and overall treatment plan. Adjust your educational approach according to these When planning an education session, it is equally im- factors. The chart below provides a list of recommen- portant to take into consideration the circumstances dations for an effective education session. in which the ill child and their family find themselves.

1. Fostering therapeutic nurse-patient relationships Pullen, Richard L. Jr. EdD, RN; Mathias, Tabatha MSN, RNNursing Made Incredibly Easy!: May-June 2010 - Volume 8 - Issue 3 - p 4

48 49 Section B Section B

“At each stage of development – from infancy, What an education session should include overview of the topics that should be covered pre- preschool and school age to adolescence and The contents of the education session should vary and post-surgery as well as post-discharge. based on when you conduct the session. Here is an young adulthood – there are special considerations in stoma care.“ Educational session contents Recommendations Rationale

Recommendations for a successful education session Pre-surgery • Anatomy and physiology of the digestive/urinary system. • Planned surgery information/clarification. Recommendations Rationale • Stoma appearance. • Examples of stoma products. Make sure you have enough time. It is important to respect that people learn at different paces. • General stoma care. • Financial resources.

Check for readiness to learn and stage of grieving. This will guide you in at what stage of readiness to learn they are. Post-surgery Visualisation of the stoma Stoma care: • Open the pouch. • Empty the pouch. Consider the child’s developmental stage according to age. This will guide your teaching approach and ensure you use words and descriptions the child can understand. • Close the pouch. • How to remove the pouching system. • How to measure the stoma. • Reproduction of the measure on the skin barrier paper. Encourage the child to participate in his or her care. This will promote his autonomy and make him part of the care • Cutting of the opening of the skin barrier. • How to clean and dry the peristomal skin. • How and where to apply the stoma paste if needed. • How to apply the pouching system. Use teaching aids. This will help you adjust the education to the child's developmental stage and level of understanding. • Look of normal peristomal skin. • When to change the pouching system. • Normal stool characteristics, odour, gas management. • Rectal discharge management in the case of a digestive diversion. Suggest meeting with another child with a stoma or a While we can teach stoma care, a visitor can talk about what it • Medication: Can colour the stool/urine or cause odour. In the case of faecal stomas, it parent. is like to live with a stoma. should be in liquid form, not slow-release because the absorption may be compromised when a medication is absorbed further in the digestive system. • Return to daily routine: Clothing, bath/shower, school, sports. Special attention should be given to culture sensitivity with hygiene practices, i.e. which hand is used in cleansing. Provide different educational material (e.g. written, video, More than handing out material, explain stoma care – in the • Complications: Signs of diarrhoea/constipation and management, signs of electrolyte websites). patient/family’s language, taking cultural issues into imbalance and management. consideration, too. Make sure that the patient/family understand. An interpreter may assist you make sure that they go to appropriate websites. Stoma and peristomal skin complications Stoma products: pouching systems and accessories. Nutrition according to age: introduction of new food, prevention of blockage. Professional, financial, psychosocial resources (e.g. youth camp). Teenagers: Address the teaching to them first. This will promote their feeling of responsibility in their care and Stoma products supply centre. autonomy. The teens’ priority for learning may be different than Surgeon and stoma nurse contact details that of the parents.

Post-discharge Follow-up with the patient and family to make sure they are caring for the stoma according to the recommendations and adjusting to their new reality.

50 51 Section B Section B

“The post-period is a transition period It can also be useful to make a checklist to make sure helps ensure continuity of care from one caregiver to where everyone has to adjust. Keep in that all the steps have been completed. This list also another. Here’s a sample checklist: touch with the families who need to be supported and guided in order to avoid inappropriate reactions.“ Teaching items Demonstration by Practiced by Mastered by Comments the stoma nurse patient/family patient/family

Open the pouch April 4, 2018 April 5, 2018 April 6, 2018 Empty the pouch April 4, 2018 April 7, 2018 April 8, 2018

Etc.

Post-surgery education Tips regarding product selection Before starting another session, always ask if there tions like Skype or FaceTime as an alternative to in- The contents of the education session should vary Make sure you have several brands of stoma are any questions or matters they need clarified. person visits. Use your clinical judgement to deter- based on when you conduct the session. Here is an products available for the child and parents to mine how often you should have contact with the overview of the topics that should be covered choose from, so they can decide which brand is the Pre-discharge family, either via phone calls or emails. pre- and post-surgery as well as post-discharge. most appropriate. Make sure children and parents have all the relevant information before they leave the hospital. This in- Keep in mind that, although the child and parents Where to begin You should also provide information about stoma cludes: were comfortable with the education provided in the The very first step in stoma education is getting both accessories, although the philosophy is to use as few hospital, this might change when they get home. It is the parents and the child (if age-appropriate) to products as possible in paediatric stoma care in order • The pouching system/accessories that have been recommended that the stoma nurse meet with the touch the stoma. It’s important that they understand to prevent any allergic reaction. The skin of most selected with a prescription/contact with a supply child and parents at the follow-up appointment with that it’s not painful. children heals very quickly, so there are less peristomal company. the surgeon to ensure good communication with all problems, assuming the stoma skin barrier is cut and • Financial resources. involved. When instructing parents, start with simple tasks. For applied correctly. However, it is important they are • Psychosocial resources, e.g. a youth camp for example, you can first demonstrate how to open and still aware of existing accessories. children with a stoma. Dealing with special challenges empty the pouch. You can demonstrate by using a • Surgeon and stoma nurse phone numbers/emails. You might encounter situations where the child or doll, and then on the child, and then the parents can Concluding the session • Written information about when they need to call parent has some type of challenge or impairment perform the task under your supervision. Once you have completed the education session, the stoma nurse or the surgeon. that should be taken into consideration when con- remember to provide the child/family with written • Follow up-appointment date and time. ducting an education session. The same procedure can be followed when demon- material on the topics you have covered in the strating a pouch change. Ideally, the parents and/or session. This way, they can go through the materials Post-discharge In the chart below, we outline some recommenda- child (depending on the age) should master the pro- at their own pace when they get home. They are After discharge, we recommend keeping in touch tions for dealing with the most common types of cedure before being discharged from the hospital. encouraged to ask questions if there is something with the patient/family weekly. If the patient lives far challenges. they do not understand, or when they need more away from the hospital, you can use online applica- In addition to the basics of changing the pouch, the information. post-surgery education session should also address skin care. The child and parents must be taught At the end of each session, make sure that the child about the characteristics of healthy peristomal skin, and parents have understood what they have been and know what to do in case a problem arises. They taught. One way to do this is to ask questions to need to be taught how to clean the peristomal skin; verify what they have learned during the session. Ask how to dry it; and how to assess for any loss of questions like: integrity. They also need to understand when they should call the stoma nurse or the surgeon. • What type of stoma does your child have? • When should the pouch be emptied? • Name two signs indicating that the pouching system must be changed.

52 53 Section B Section B

Recommendations for dealing with the most common types of challenges However, be careful when selecting other children or After the session, encourage the teenager to share Challenges Recommendations parents. It is important that the ones you select have with his/her parents what they have learned. a positive attitude and demonstrate it is possible to The same applies when visiting the stoma nurse or Visual impairment • Use material with large print. adjust to having a child with a stoma. the surgeon/doctor. The teenager may prefer to be • Record audio instructions. by himself and parents should respect this feeling. • Use pre-cut skin barrier. A special word about teenagers Teenagers also like meeting people their own age • Recommend pouches with click-on signage assembly. When educating a teenager, we recommend instructing with a stoma. They may want to look at others’ • Use tactile signage of the location of the stoma, disc or plate. the teenager first, without the parents being present. There are several reasons for this approach. stomas; talk about clothes they wear; what activities they do; and which sports they play. Although we Some teenagers are reluctant to talk about a part of provide teenagers with this information as a part of their body that they don’t normally discuss with or show educational sessions, it has more credibility when it Illiteracy, learning problems, hearing loss patients, patients • Use images and symbols for learning. their parents. Some teenagers may act differently comes from a peer in the same situation. who speak a different language • Use real objects and photographs to convey messages. when their parents are present and may not express • Record videos on a phone. their true feelings. This approach also speaks to the Additional resources • Involve speech therapists or sign language interpreters to teenager’s independence and can make it easier for Here is a list of additional resources that can be use- convey the information. them to accept the stoma as being a part of them. ful in your education sessions. • Use translators in the appropriate language, or contact stoma associations in other countries. Additional resources for education sessions Additional resources/tips Purpose

Step-by-step instructions with pictures/actual pouch at Provides another method of learning If the family speaks another language, it might be Some children do not express their feelings verbally. bedside. necessary to get an interpreter. The Internet can be They feel more comfortable expressing themselves a valuable resource as well, but make sure the through puppets, dolls, or drawings. This can provide information is pulled from a reliable website. important information about whether further referrals are necessary i.e. child psychologist. In some coun- “Pouch Me Home” program (if available in country). Outlines the necessary steps for the staff working with the family to accomplish before going home. Special tips for teaching children tries, “child life specialists” are helpful for handling Even at a young age, children can participate in their these situations. (For more information, see Section B, stoma care. For example, they can help by collecting Chapter 3, ‘Impact of a stoma in children’). the stoma supplies, drawing the pattern of the stoma Pamphlets, magazines, colouring books and other materials As a reference when needed. on the skin barrier paper (that we have already Less formal methods of education available. drawn) and holding the pouch while the skin barrier In addition to formal education sessions, you can is applied on the skin. By allowing children to be a arrange for the child and parents to meet other part of their own stoma care, you can help them to children with a stoma and their parents. feel proud and useful. They may begin to view it as a Online resources. Interactive programs for patient/family YouTube videos. game, rather than something to be feared. You can New parents always think that they are the only ones E-learning through computer/smartphone (HIPPA secured). also introduce role-playing, where the child can play in this situation. Meeting other parents who have the role of the stoma nurse and apply a pouch on the gone through the same experience can help diminish Caution: Ensure that the information is appropriate. belly of a teddy bear or doll. Children like imitating their anxiety and give them an opportunity to share adults, so this approach can be quite effective. their concerns. Listening to others’ stories may help them realize that they are not alone. They can see that there are ways to overcome the situation. Young children typically know some parts of their Patient/parents can videotape nurses changing a stoma Facilitates the understanding and reproduction of the technique. body, but they have no idea about how they function product on their smartphones for later reference. internally. Using drawings can help children to identify internal parts of their body, e.g. the kidneys or bowel. You can use a mascot with a stoma to Inspirational letter to explain to friends what is a stoma. How to explain to others about living with a stoma. show how to empty the pouch, or use a colouring book that tells children what they need to bring to https://www.stomavereniging.nl/community/informatie/werk- stuk-spreekbeurt-stoma/ With a note saying that translation school. You can also read or tell a story about a child will be available with a stoma. The key is to take advantage of the child’s imagination and use that as a tool for communicating with them about his/her stoma.

54 55 Section B Section B

Chapter 3: Working with the parents Once the neonate’s condition is stable, the parents Giving birth to a baby with a congenital defect, or a should be involved in the baby’s daily routine, such as disease that requires formation of a faecal or urinary diaper changing, skin care, supportive holding and The impact of stoma surgery stoma, can be a difficult experience for new parents. skin-to-skin contact. This will help re-establish the They may find themselves with a baby who has been initial bonding. Some mothers may want to breast- on the child and family transferred to a special unit or a hospital outside of feed their baby. In such cases, the stoma nurse plays their community. The mother and her baby are a vital role in reassuring these mothers, informing separated, and their initial bonding is threatened. them that the stoma doesn’t interfere with breast- Parents may not understand why this has happened. feeding. Once they are comfortable with the every- And although they have been informed about the day routine, they can begin to learn how to care for situation, they may have problems adjusting. Parents the stoma and change the pouch. They need to be may feel a variety of emotions, including guilt, blame, constantly reminded that touching the stoma is not shock and self-doubt. They may even question their painful for the baby. They also need to know that the Stoma surgery has a tremendous impact on both the mated. In this chapter, we outline general factors to ability to be good parents given the baby’s medical baby may cry, not because of any discomfort from child with the stoma and the child’s family. The entire keep in mind regarding the impact of a stoma, as well condition. actual stoma care, but because of feeling restricted family will experience a change in their everyday life, as factors unique to the different age groups within when being held in connection with a pouch change. and the impact of this change cannot be underesti- paediatric care. According to the Kübler-Ross model3, there are five The stoma nurse should assist the parents to assess stages of grief: denial, anger, bargaining, depression their ability, acknowledge any possible apprehension and acceptance. This model is relevant because the and support good technique. Involving both parents parents are actually mourning the loss of the ‘perfect is recommended so that the stoma care does not rely Neonates newborn’ they were expecting. Parents will go on one parent. Parents can be introduced to other Summary of developmental stages and impact through these phases, so it is important to be aware parents in the same situation. of this in your approach and identify which stage of Characteristics of Parents’ reaction Nursing approach grief they are experiencing. They need to be reas- developmental stage sured that they are not alone; that a professional stoma nurse will support them throughout the • Premature separation. • A sense of unfairness. • Clarify and reassure the parents. medical continuum – from the time the baby has a • Primary bonding • Doubt. • Answer their questions. stoma until after stoma closure. threatened. • Anguish and guilt feelings. • Encourage the expression of emotions. • Fear that other pathologies • Suggest a meeting with other parents. The nursing approach might be discovered. • Demonstrate stoma care. Make sure the parents have a good understanding of • Involve the parents in the stoma care. the explanations given by the surgeon. It is important to answer any questions they may have, clarifying any misconceptions regarding the baby’s condition and short- and long-term outcomes. The parents should have time to express their feelings in a supportive environment. Emphasis at this stage should be on the baby’s positive progress. This will help the parents to avoid negative thoughts, which may only add to their anxiety.

56 57 Section B Section B

The first two years of life Pre-school children (2 to 5 years of age)

Summary of developmental stage and impact Summary of developmental stage and impact

Characteristics of Parents’ reaction Nursing approach Characteristics of Child’s reaction Nursing approach developmental stage developmental stage

• Fear of new faces. • Parents are anxious about their • Encourage the parents to stay at the • Need for independence and au- • May interpret the stoma as a • Inform children according to age. • Mostly trust the parents. child’s reactions. hospital with their child. tonomy. punishment. • Encourage children’s participation in • Influenced by the messages • Visit the child on a regular basis. • Genitalia discovery. • Feelings of shame. caring for their stoma. received from their environment. • Establish a relationship based on • Potty training. • Castration fantasies. • Use of puppets and dolls. confidence. • Give simple and clear information. • Transmit a positive message about the Parents’ reaction Nursing approach stoma.

• Afraid their child will miss classes. • Encourage the parents to avoid over- • Fear that the stoma protecting their child. product may leak at school. If a stoma is created within the first two years of life, stand. Remember that very young children live in the the child’s reactions must be taken into consideration moment; so all explanations should be given to help them and their parents go through the situa- immediately before the procedure (e.g. change of tion as easily as possible. Parents may be sad and stoma product) and not several hours before. anxious when their child has to go through surgery. Children of this age are very influenced by their Pre-school age is characterised by the child’s need for is important to give the parents the opportunity to They may worry about the child’s reaction, anticipat- environment and the facial expressions of their family independence and autonomy. It is the age for genitalia express their own feelings in order to help them face ing possible distress from the experience. Some tod- members and caregivers. It is important that the discovery, and it is also within this period that children reality in a positive way. dlers may be angry towards their parents because it parent or caregiver has positive facial expressions are potty trained. Pre-schoolers examine their body was the parents who agreed to the surgery. and uses positive language throughout the care. with great interest, begin to explore their genitalia; The nursing approach and are convinced that the part of their body that For children between two and four years of age, the Working with the parents We highly recommend preparing everything you receives the most attention is the most important digestive and urinary systems represent a confusing Ideally, one of the parents should stay with the child need before changing the pouch, and not prolonging one. Children may have confused emotions and ensemble. Children can name parts of their bodies, while in hospital, as this will help reduce the child’s the procedure. Distraction is a good way to change sometimes see the stoma as a punishment. Some yet have little idea about their internal organs. Thus, anxiety and promote a more positive experience. The the focus, and parents can help here to create a may experience feelings of shame, and boys may simple and clear explanations contribute to demysti- parents’ positive feelings can encourage the child’s calming atmosphere. Some negotiation may take have castration fantasies related to surgery. fying any misconceptions children may have. It is adjustment to the stoma. Parents also need to be place, but it must be a win-win experience. It is important to pay attention to their fantasy world. aware of their child’s ability to cope with stressful comforting for children to know that they may have Working with the parents Sometimes, children won’t express feelings directly, situations. their say, but you must use your clinical judgement The parents’ feelings of guilt may lead to leniency in but puppets and dolls may help them to express their and know where to put limits. Children need to know caring for the child. Other parents may react by concerns and emotions. The nursing approach that certain rules apply and that they cannot control becoming overly protective. In spite of the tendency Usually, children of this age are apprehensive of new the entire procedure. to overprotect, parents must be encouraged to raise Once the child is home, maintain contact with the faces. They do not trust other people. For this their child in a normal fashion. Rather than emphasising family, so you can continue to offer support and advice. reason, it is important to establish a good relationship It is natural for children to explore their stoma and how their child is different, parents need to provide with the parents, so that the child can observe this pouch, as they do with any other part of their body. their child with a means of coping with the stoma. It before you perform any physical care. Use play and The pouch may represent an interesting discovery physical contact to form a relationship with the child because of its texture and sound. We advise parents that involves more than invasive procedures. to dress the child with a one-piece garment or a jumpsuit at this age, in order to reduce physical It’s important for you to adjust to the child’s world access to the stoma. and explain stoma care in words children can under-

58 59 Section B Section B

School-age children (6 to 12 years of age) Adolescence

Summary of developmental stage and impact Summary of developmental stage and impact

Characteristics of Child’s reaction Nursing approach Characteristics of Teenager’s reaction Nursing approach developmental stage developmental stage

• Competency developmental stage. • Children are concerned about • Demystify the situation. • Quest for autonomy and inde- • May be angry with the stoma, in • Try understanding the teenagers without • Intimacy is important. their competencies. • Reassure. pendence. denial. judging. • Social role: being a • They are destabilised. • Encourage the parents to respect their • Highly concerned with their • Those who have been very sick • Confront them with their occasionally student. child’s autonomy. appearance, and reserved. may see the stoma as a rebirth. aggressive attitude. • Respect the child’s intimacy. • Fear that the bag can be seen; • Respect the teenager’s intimacy. that it smells or makes noise. • Be open to discussing sexuality issues. • Recognise the importance for teenagers to use social media as a way of seeking knowledge and reducing isolation. • Keep in mind that every teenager reacts This is the period when children acquire autonomy. child to become increasingly involved in caring for differently. Some may choose to disguise They can now care for their own personal needs. the stoma. Use your clinical judgment to assess the their bag; others may show it off. Having a stoma created at this age may signify losing child’s competence and ability, and motivate the child • Refer to teenager support groups/youth the control they have struggled so hard to gain. Before to achieve autonomy. camp. surgery the child was independent in his personal care. • Refer to a psychologist, if needed. After surgery all of this changes. Suddenly, there is a The nursing approach • Recommend company or association stoma that attracts a great deal of outside attention. Once again, your role is to demystify and de-dramatize booklets/magazines for teenagers. This can cause feelings of confusion and uncertainty. the situation. As mentioned previously, explain in Some children even experience feelings of shame. clear, simple terms why the child has a stoma. Children of this age also live in a fantasy world, and it Parents’ reaction Nursing approach School-age is also a period where children begin to is important to give them clear explanations that acquire competencies and abilities. In addition to they can understand. This will help to demystify false • Parents already have a child in • Encourage the parents to avoid over- being students, they have activities and a social role. beliefs. Puppets and dolls may help children express adolescence crisis. protection. It is an age where intimacy becomes important. how they feel. Some children will name their stoma, • They are preoccupied with their Children begin to feel shy and do not like showing as it is a good way of adjusting and making the child’s future. their genital parts. stoma a part of themselves. • Split between overprotection, anxiety, culpability feelings. Working with the parents Listen to them, their fears, and their apprehensions, Parents are often more emotionally affected than the so you can promptly diffuse any misconceptions they child. They may be anxious if the child misses school may have. This will also help you quickly detect any and worry about how the child will cope if the pouch concerns they may have about school, such as the leaks when they are away from home. They may feel fear of leakage. Children are usually more resilient guilty that they cannot protect the child from bullying. than adults, as they live in the present time. Thus, we They often have great difficulty imagining that their recommend not informing children hours in advance child will be independent and successful in caring for when they need a pouch change. It’s best to wait to the stoma. just before the procedure. As mentioned previously, it is important to perform the procedure efficiently but Parents must be encouraged to promote their child’s smoothly, taking time for small breaks as necessary. autonomy. Help them to see that involving the child in the care (e.g. helping to gather supplies; removing Caring for the stoma at school tape and skin barrier; tracing stoma size on the skin As with all ages, school-age children should have barrier backing) can give back some control in the access to at least two staff resources when going to child’s routine. All the family members must find a school. They should also have extra clothes and reasonable balance in this regard. Depending on the stoma supplies available, either in their backpack or child’s level of autonomy, the goal should be for the locker, in the event of an accidental leakage.

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“Adolescence is generally a time of turmoil. Many consider it a war zone – a time and place in life marked by open rebellion and negativism. In fact, the teenagers in question may be demonstrating nothing more than reasonable physical and psychological growing pains.4.“

Having a stoma during adolescence can be devastating The psychological impact Factors impacting their response effect on the adolescent with the stoma. If adolescents to an adolescent’s self-esteem, especially in a society Adolescents tend to adjust better if the stoma is are left totally alone, without supervision or interest, that focuses on body hygiene, appearance and Hospital environment? temporary and they know it is only for a limited, they may feel abandoned and be scared that they have success. In addition to their developmental crisis, Hospitalised adolescents are more vulnerable. They defined time period. Adjustment is not so simple when to deal with all these new responsibilities alone. adolescents must go through a situational crisis, which are away from their home, family, friends and maybe the stoma is permanent, since its impact on their life has a physical, psychological and social impact. their favourite pet. They don’t wear their usual clothes. will be long-term. You may also encounter adolescents At school Being hospitalised also means they have to stop their who have temporary stomas, but for a prolonged Adolescents with a stoma may be preoccupied about The physical impact activities and miss school. All of this represents a period of time due to complications. It’s important that how their peers will react. They fear rejection. How- The most common reason that adolescents have challenge to their identity. you are aware of all of these circumstances so you can ever, sharing their condition with peers is a delicate is- stomas is inflammatory bowel diseases (IBD). These help the adolescent adjust to their specific situation. sue. Some have decided to tell their friends about the teenage patients must be informed after the surgery While at the hospital, adolescents may feel more stoma, only to regret this later when the friends have that they may experience accelerated growth and dependent. They may feel that they have lost control The circumstances surrounding the surgery will also betrayed them. Hiding the condition may also be harmful. sexual maturation. In the same way, sexually mature and decisions are being made for them, which leads to have an impact on the adolescent’s adjustment. An adolescents may experience a regression during an feelings of increased vulnerability. During the hospitali- emergent surgery could mean that the stoma is a Many of these adolescents have missed a lot of school acute period of their illness. Girls may lose their zation, adolescents must undergo physical examina- sudden change. However, a planned surgery (i.e. due because of illness and surgery, and as a result have breast development and experience amenorrhea. tions and manipulations that may embarrass them. to a chronic illness) may represent a delivery, a re- to repeat school years. This means they are left be- Boys’ muscle strength may diminish. They may be examined by members of the opposite birth, and the hope for a better quality of life. hind their peers. This feeling of being left behind can sex and in the presence of others in the room. lead to feelings of depression. Body image and sexuality The social impact Adolescents with a stoma put a great deal of emphasis How they cope The nursing approach on the acceptance or rejection of their body. They Reactions to this perceived loss of control vary from Within the family You play an important role in helping teenagers un- may have difficulty dealing with their new mode of adolescent to adolescent. Some may go through the Adolescents may feel they are different from other dergoing stoma surgery. Provide step-by-step informa- elimination and new body image. entire hospitalisation period without reacting, trying family members and worry about being rejected. Be- tion about the planned surgery; the medical tests; the to keep control of their emotions. Some won’t ex- cause of them, their parents often have to miss work; stoma; stoma products and resources; and share what They are often clumsy with their stoma care, carry- press their real emotions to the hospital staff, but will family activities are compromised; and siblings receive the process of adjustment to a stoma is like. It is im- ing it out with feelings of disgust. Subjects like fertility, share with their parents. They may have emotional less attention from their parents. They may feel they are portant to provide consistent information as they may sexual potency, menstruation, and pregnancy pose outbursts and rebel. Others will react in a completely a burden for their family, and that they have no value. test you to both ascertain your level of expertise and uncomfortable questions for adolescents with opposite manner, becoming totally submissive and to reassure themselves. stomas. Adolescents with stomas may feel that their self-centric. They may feel sad, desperate, and fall Rebellious emotions can arise, such as, “Why is this capacity to attract a sexual partner is reduced. They into denial. happening to me?”. Those emotions may lead to the Teenagers’ intellect may help them adjust to their indi- may feel that, if they have problems liking them- parents or siblings feeling guilty. Some parents will re- vidualised pathology. They can understand the normal selves in their current condition, how can they ever To face the loss of control of their eliminatory function, act by overprotecting their child. Parents may find it physiology of the human body, as well as the conse- hope to be loved by someone else? They may fear adolescents may develop several defence mecha- difficult to recognise and accept their child’s new com- quences of their own pathology. Using visual aids, as that their sexual performance has been altered. nisms. Some may react by refusing to recognize their petencies, especially after an illness or a surgery for a well as abstract and theoretical explanations may help Some teenagers avoid the subject, refusing to con- limits. They may try to surpass themselves and do stoma and may react by overprotecting him. Often them to understand their condition more fully. Know- sider themselves as sexual beings. Some of them will more than they should, such as having their pouch parents of teens with Crohn’s disease and ulcerative ledge is a valuable tool to help with adjustment; one have sexual relations where the only goal is to test stay in place longer than prescribed, acting as if they colitis have spent so much time with a sick child that, that will help reduce adolescents’ anxiety regarding their ability to seduce. don’t have one. When they react in this way, they are once they have a stoma, the parents have difficulty their illness. trying to affirm their independence and defy author- letting the teen become independent. ity, which is all part of the adolescence experience. However, a word of caution is necessary. Some Other parents will excessively promote the adolescent’s adolescents may intellectualise their illness and be- autonomy. This reaction may also have an adverse come preoccupied with learning more about their

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disease process. Yet, their ability to understand their allowance for any shyness they may have about their 6. Help them plan for life with a stoma Career guidance can also enable the adolescent to pathology may be superior to their ability to adjust to body parts, encourage adolescents to take charge of Like everyone else, adolescents want to be able to have realistic expectations concerning his/her future. it emotionally. This can make a difference in their the stoma care. Let them know that if they need help, contribute to society. Encourage them to set realistic adaptation process. they should be responsible for asking for it. goals, which take into consideration their capabilities Caring for teenagers with a stoma is a challenge. It as well as their limitations. Help them avoid such requires patience, availability and respect of their Another factor to keep in mind is that adolescents, 3. Help them interpret and deal traps as: pace and capacity to adapt. It also calls for accept- while assimilating the information we give them, can with others’ reactions • total denial of their limitations, which can lead to ances of who they are, without judgement and in sometimes misinterpret it. It is important to validate Adolescents might not always understand why their self-deception; or spite of their attitude or behaviour. Most of all, we what they really understand. parents react the way they do to their illness or stoma. • exaggeration of their illness, which lead to feelings must help them adapt to their new condition, recom- It is important for you to explain to them why their of worthlessness and desperation. mending a pouching system that is reliable, comfort- Adolescents may also elaborate on their own theories parents might become over-protective or stand-offish. able, discreet and, more than anything, secure. made of facts, imagination and emotions. This mixture may reflect their life experience. As mentioned earlier, some adolescents will feel the need to talk about their condition with their peers. At times, you may become an adolescent’s special Encourage them to find words that will demystify the confidant. He or she may express feelings to you that situation in a simple and natural way, without going they would not have expressed to their parents or into details that will lead to embarrassment or disgust. friends. Adolescents with a stoma need to have some- Adolescent patients should be aware that physical one they can rely on, someone who will not judge changes might generate discomfort amongst others, them, and someone who will give them the time they especially in the younger adolescent. However, at the need to process what is going on. While providing middle of adolescence, peers usually become more emotional support is a critical part of our role, we accommodating. They may even sympathise and must also be able to recognize our limits and refer to a admire the adolescent, especially if he or she demon- psychologist when the adolescent shows signs of anxi- strates a positive attitude. Suggest that the adolescent ety or depression. carefully select a trusted friend and ask for feedback.

Additional recommendations 4. Recognise their need for support Here are some additional recommendations when deal- Adolescents with a stoma may feel isolated, as if they ing with adolescents with a stoma: are the only ones going through this. They probably don’t know anyone else in the same situation. This is 1. Try to understand, without being judgemental why it is so important to introduce them to other Although their physical and sexual maturity may adolescents with a stoma. This gives them a network change due to their illness, it is important to communi- with whom they can share their concerns and ex- cate with teenagers according to their age level. Be- change ideas/get advice regarding clothes, sporting fore meeting with an adolescent, familiarise yourself activities, social life, etc. There is no doubt that the with the child’s age and maturity. Be aware that visitor with a stoma has more credibility than anyone adolescents can react with a wide range of emotions. else. It is essential for the adolescent with a stoma to Let the adolescent know that you understand their meet others who have succeeded. This gives him/her feelings. Negative feelings may increase at home; for hope, and hope is crucial to adjusting optimally. this reason, it is important that you continue to com- municate with the adolescent after discharge, either In some countries, camps for young people with a by phone, email, or face-to-face contact. stoma provide the opportunity to meet other adoles- 2. Respect their intimacy cents experiencing the same situation – in a fun, non- and address sexuality issues judgemental environment. This gives them a chance It is important to discuss the subjects of contraception to share their concerns and feelings, and hear solutions. and protection with them. Once again, a relationship These camps help dispel the feelings of isolation they based on trust and respect for the adolescent’s intimacy may be experiencing, by giving them the opportunity will enable you to discuss this delicate subject with to develop new relationships. This represents a them openly, and help them maintain a positive body positive direction. image. 5. Keep an eye out for signs Adolescents are uncomfortable with people entering of depression or anxiety their physical space. Although supervision is necessary Be on the lookout for any signs of anxiety or when they’re learning how to care for their stoma, you depression, and be ready to ask for a psychological should supervise at an acceptable distance. To make consultation, if necessary. 3. See the Glossary for more information about this model. 4. Katherine Jeter, 1982

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Chapter 4: Daily activities and recommendations Daily activities Activity Recommendations Bath/shower May bath/shower with or without a pouch? with a stoma • Inform the parents and patients that there is NO risk that water will enter inside the stoma. Dry the skin barrier and pouch immediately after the bath/shower. • Do not use oily soap, foam bathing, oil in bath. This interferes with the stoma product adhesion. • If soap is used, make sure to rinse the skin thoroughly and gently tap dry • A moisture barrier is available in some countries to keep wounds, dressings, and IV sites dry.

Swimming pool Always wear a pouch With adult stoma care, research often shows that a precautions must be taken. For example, we recom- • The stoma pouch must be emptied before entering the pool. patient’s ability to resume daily activities has a mend emptying the pouch before putting babies in • Liquid skin barrier can be applied on top of paper-type skin barrier adhesive to waterproof it. positive effect on their quality of life and ability to prone position, when hugging them, or when using Elastic barrier strips can secure the skin barrier. live a productive life post-stoma surgery. child transport devices. • Wear a belt or tight briefs/underwear under boxer swimsuits. Dry the skin barrier and pouch immediately after. When working with paediatric stoma patients, our The following chart outlines some basic daily activities • Suggest printed bathing suits instead of plain. experience also indicates that being able to resume for children with a stoma, and the recommendations • Smaller pouch/mini-pouch or stoma cap, if available. daily activities has a positive impact on the entire regarding stoma care when participating in these • Remember to protect the filter. family. It is usually possible for children with a stoma activities. to return to usual daily activities. However, some Clothing • Suspenders for boys to hold the pants. • One-piece, jumpsuit. • Teenagers should avoid wearing jeans or pants that are too tight.

School • Do a trial run with a half-day at the beginning. • Parents or teenagers should meet with the school nurse if available or another school resource depending on to the age of the child. • The time of return also depends on the method of transportation: walking, being driven in a car or bus (some children could have hour-long bus rides). • Keep school authorities and classmates informed.

Sports • Be cautious with contact sports – protect the stoma. • Use stoma shields/guards (bought or made by an occupational therapist) • Use stoma belts during sporting activities. • Wide hair bands provide good support. • Use of elastic barrier strips.

Sleep-overs • Bring extra stoma products. • Bring extra clothes.

66 67 Folliculitis Inflammatory bowel diseases cally: denial, anger, bargaining, Glossary Inflammation of a follicle, usually See ‘Crohn’s disease’ and depression and acceptance.6 caused by Staphyloccus Aureus. ‘Ulcerative colitis’. Laparoschisis Abdominal wall defects Bladder exstrophy Crohn’s disease Gastroschisis Ileal conduit A condition characterised by a See ‘Omphalocele’ or ‘Gastroschisis’. Bladder exstrophy is a rare birth Inflammatory bowel disease in Gastroschisis is a defect in the A method of diverting the urinary congenital defect in the anterior defect in which the bladder which the inflammation may abdominal wall, usually to the (Urostomy) flow by transplanting abdominal wall, often accompa- Anorectal malformation develops outside the fetus. The occur anywhere on the GI tract, right of the umbilical cord, through the ureters into a prepared and nied by protrusion of part of the Anus is absent or has an abnormal condition is more common in from the mouth to the anus, and which the large and small intes- isolated segment of the ileum, small and/or large intestine.7 position. Anorectal malformation is males than in females. The may be continuous or patchy.4 tines protrude (although other which is sutured closed on one a spectrum, ranging from very mild exposed bladder and urethra organs may sometimes bulge end. The other end is connected Liquid skin barrier forms, such as perineal fistula, to result in the bladder being unable Developmental stages out). There is no membrane to an opening in the abdominal Acrylate copolymer or a more serious ones, such as a to store urine.3 Please refer to Erik Erickson’s stages covering the exposed organs in wall.2 cyanoacrylate clear film that can cloaca in girls. With more severity, of psychosocial development. gastrochisis.6 be placed on the peristomal skin a higher incidence of alterations Cloacal exstrophy Intestinal atresia and stenosis to provide skin protection from or agenesis of sacral vertebrae, of Cloacal exstrophy is the most End stoma Granuloma Intestinal atresia is congenital de- stoma effluent, adhesive stripping associated genitourinary malfor- serious form of bladder-exstro- Stoma that is created by dividing Presents as friable tissue, usually fect broadly used to describe the or, in some cases, to seal the skin mations, of flat perineum with little phy-epispadias complex (BEEC), in the intestine, bringing the proximal in small, raised round shapes, complete blockage or obstruction barrier.4 or no muscular development.1 which the rectum, bladder and end of the intestine through the scattered at the mucocutanous anywhere in the intestine. Stenosis Imperforate anus is a type of genitals did not fully separate as abdominal wall, and maturing the junction.2 refers to a partial obstruction of Loop stoma anorectal malformation. the fetus developed. These organs stoma once outside of the ab- the intestines usually resulting in a A loop ostomy or stoma is a may not be correctly formed. The dominal wall to attach to the skin.4 Hartmann’s procedure narrowing of the intestinal lumen. stoma where both the upstream Antegrade continence enema pelvic bones are more severely The Hartmann’s procedure is the Small intestinal or colonic atresia (proximal) and downstream Antegrade colonic enema surgery affected as well. The backbone Enterocolitis surgical removal of a diseased are usually caused in utero when (distal) openings of the bowel are (ACE) and Malone antegrade and spinal cord may be affected, Enterocolitis is an inflammation of portion of the distal colon or prox- an unexpected event decreased brought out through the same colonic enema (MACE) are surgical as well as the kidneys.3 the digestive tract and comprise imal rectum with formation of an intestinal perfusion leading to is- hole in the abdominal wall.8 procedures that are intended for Enteritis (inflammation of the end colostomy, accompanied by chemia of the respective intestinal alleviating severe symptoms of Colostomy small intestine) and Colitis (inflam- oversewing of the distal colonic or segment, leaving the segment Malrotation constipation and faecal inconti- Surgically created opening into mation of the colon). Enterocolitis rectal remnant. This procedure narrow and underdeveloped. (ref: An intestinal malrotation is an nence caused by ano-rectal mal- any section of the colon.4 is caused by infections of bacteria, may be the first stage of a two- https://emedicine.medscape.com/ abnormality that can happen formations or conditions that have viruses, fungi, parasites, or by oth- part operation, in which at a later article/940615-overview#showall) early in pregnancy when a baby’s impaired intestinal motility as Constipation er noxious agents that affects the date, the colostomy and the over- intestines don’t form into a coil in observed in Hirschsprung’s disease Constipation occurs when intesti- inner linings on affected area in sewn remnant are reconnected.2 Intestinal obstruction the abdomen. Malrotation means and spina bifida. The surgical pro- nal passage of stool is inhibited the intestine. Enterocolitis usually A partial or complete blockage of that the intestines (or bowel) are cedure connects the end of (not by obstructive substances; manifests in frequent diarrheal Hirschsprung’s disease the large or small intestine.2 twisting, which can cause obstruc- appendix to the stomach surface see intestinal obstruction instead) defecations. (ref: J Gastroenterol. Absence of intraneural ganglion tion (blockage).9 creating a stoma through which a by various factors that interfere 2003;38(2):111-20) cells and hypertrophic nerves of the Intussusception catheter can be inserted allowing with intestinal motility. These fac- bowel which have created a func- Process in which the intestine Meconium ileus flushing the bowel thus it can be tors can include diet, (lack of) liq- Familial adenomatous polyposis tional partial or full obstruction.4 telescopes back on itself. The Meconium Ileus (MI) is a condition emptied. (ref: https://www.ouh. uid uptake and liquid absorption, Inherited disorder characterized resulting blockage can result in where the content of the baby’s nhs.uk/patient-guide/leaflets/ and other congenital and geneti- by the development of multiple Hydronephrosis bowel necrosis if left untreated.4 bowel (meconium) is extremely files/11729Penema.pdf) cal factors. (ref: Medicine (Balti- polyps in the colon or other Hydronephrosis is swelling of one sticky and causes the bowel to be more). 2018 May;97(20):e10631) organs. Development of cancer is or both kidneys. Kidney swelling Jejunostomy blocked at birth. Most babies with Anti-reflux valve nearly 100% within 15 years of happens when urine can’t drain Surgically created opening into meconium ileus (90%) have Cystic A valve incorporated in urostomy Convexity the appearance of polyps, which from a kidney and builds up in the the jejunum.4 Fibrosis (CF) and it is this that has appliances. This valve stops the Surface that is curved or rounded usually occurs during adoles- kidney as a result. This can occur caused the sticky meconium.10 urine from going back into the outwards: provide tension on the cence.5 from a blockage in the tubes that Kübler-Ross model kidneys once it has drained in the skin, flattening peristomal skin drain urine from the kidneys The Kübler-Ross model is popularly Mitrofanoff/Monti pouch.2 contours causing a stoma to Fistula (ureters) or from an anatomical known as the five stages of grief, Mitrofanoff is a surgical procedure protrude better. Can be integrated Abnormal connection between defect that doesn’t allow urine to though more accurately, the mod- in which the appendix is used to to the skin barrier or added.2 two epithelium-lined surfaces.4 drain properly.3 el postulates a progression of create a channel between the skin emotional states experienced by surface and the urinary bladder terminally ill patients after diagno- allowing the bladder to be emp- sis. The five stages are chronologi- tied through this conduit and out

68 69 Section B

of the stoma. The Yang-Monti One-piece pouching system carrying urine from the bladder to Skin barrier paste (Stoma paste) Stoma nurse Ulcerative colitis procedure is an alternative proce- Solid skin barrier and the pouch as the tip of the penis and out of the An adhesive hydrocolloid mixture Registered nurse specialised in Inflammation of the large bowel dure to Mitrofanoff where (a part one unit.4 body. When urine can’t be normally available in a tube and used to the care of patients with a limited to the superficial mucosal of) the transverse ileum is used in- expelled from the body, the or- enhance the seal of the pouching stoma. Some are called Enteros- lining of the bowel.4 stead to create the conduit. (ref: J Omphalocele gans of the urinary tract (the kid- system. Also used to fill in uneven tomal therapy nurses (ET nurs- Pediatr Urol. 2010 Aug;6(4):330-7) Omphalocele is an opening in the neys, ureters, bladder and urethra) areas around and near the stoma es). These registered nurses are Ureterostomy center of the abdominal wall may become dilated, or swollen.11 to facilitate the seal of the solid specialised in wound, stoma and An opening in which the ureters Motility disorders where the umbilical cord meets skin barrier.4 continence care. may each be brought to the skin These disorders occur both due the abdomen. Organs (typically Pouching system in two separate stomas or one to abnormal intestinal contrac- the intestines, stomach, and liver) Products used to collect the Skin barrier ring Stomal necrosis ureter anastomosed to the other tions or when intestinal peristaltic protrude through the opening stoma effluent, which provide a (Moldable ring) Death of the stoma tissue result- and a single ureter brought out as movement is paralysed. Motility into the umbilical cord and are secure, predictable seal and An adhesive hydrocolloid washer ing from impaired blood flow.4 a stoma.4 disorders can be acquired or con- covered by the same protective protect the peristomal skin.4 used around a stoma to enhance genital such as Hirschsprung’s membrane that covers the the seal by providing additional Therapeutic Urostomy disease. (ref: Semin Pediatr Surg. umbilical cord.7 Prolapse solid skin barrier and/or to level relationship nursing Non-specific, general term used 2010 Feb;19(1):50-8) A prolapse is a stoma that essen- out the area around the stoma.4 A therapeutic nurse-patient to describe urinary diversions.5 Parastomal hernia tially telescopes out through itself, Can also be used to create flexible relationship is defined as a help- Mucocutaneous junction Defect in abdominal fascia that causing abnormal lengthening.12 convexity. ing relationship that’s based on Vesicostomy Intersection between the bowel allows the intestine to bulge into mutual trust and respect, the An opening is made through the mucosa and the skin.4 the parastomal area.4 Prune belly syndrome Skin barrier strip paste nurturing of faith and hope, being suprapubic abdominal wall into Severe congenital malformation (Moldable strip) sensitive to self and others, and the bladder and the bladder Mucocutaneous separation Peristomal allergic with absence of abdominal mus- A band of adhesive hydrocolloid assisting with the gratification of mucosa is sutured to the abdomi- Detachment of stomal tissue from contact dermatitis culature that presents with wrinkly used to fit around a stoma to your patient’s physical, emotional, nal skin to create a small stoma the surrounding peristomal skin of Inflammatory skin response appearance of the abdominal skin enhance the seal or to fill in an and spiritual needs through your which may have the appearance the stoma and mucocutaneous resulting from hypersensitivity to and urinary tract anomalies.4 uneven peristomal area.4 knowledge and skill.13 of a small hole.5 junction.4 chemical elements.4 Pseudoverrucous lesions Solid skin barrier Typhlitis Volvulus Mucous fistula Peristomal fungal/ Exuberant growth of benign pap- The interface between the skin Typhlitis refers to inflammation A twisting of a portion of the The end of a section of defunc- candiasis infection ules that occur around a stoma and the pouch of the pouching of a part of the cecum. It’s a gastrointestinal track that can tionalised bowel is brought Fungal rash that can occur when urine or stool irritates the system that provides the seal severe condition that usually cause a blockage, impair blood through the abdominal wall when beneath the skin barrier and/or skin, a type of chronic irritant (adhesion) and protects the affects people with a weakened flow, and damage part of the a stoma is created.4 beneath tape-bordered products contact dermatitis.4 peristomal skin.4 immune system. Typhlitis may intestine.4 and pouches.4 Fungal infection also be called neutropenic Necrotising enterocolitis may also develop around Pyoderma gangrenosum Spina bifida enterocolitis, necrotizing colitis, Necrosis of the mucosal and vesicostomies. Neutrophilic dermatosis Myelomeningocele or «spina ileocecal syndrome, or cecitis.14 submucosal layer of the gastroin- characterised by recurrent painful bifida» is a defect in the formation testinal tract. Potential causes Peristomal moisture- ulcerations that present as of the neural tube, which causes a Two-piece pouching system are: immature gastrointestinal associated skin damage pustules that enlarge and open spectrum of defects along the A solid skin barrier with a mecha- tract secondary to altered func- Inflammation and erosion of the into partial or full-thickness brain and spinal cord.4 nism that accepts the pouch.4 tions in motility, digestion, intesti- skin adjacent to the stoma, wounds, sometimes with dark nal epithelium integrity, circulatory associated with exposure to colour irregular borders and regulation, poor immunologic effluent such as urine or stool.4 purulent exsudate. These painful defense, colonisation of bacteria undermined ulcerations progress and feeding intolerance.4 Posterior urethral valves rapidly.4 Urethral valves occur when a boy Neurogenic bladder is born with extra flaps of tissue Retraction Bladder dysfunction caused by that have grown in his urethra, the Disappearance of stoma tissue 1. Spanish 2. RNAO: (http://rnao.ca/sites/rnao-ca/files/Ostomy_Care__Management.pdf) neurologic impairment of the cen- tube through which urine exits the protrusion in line with or below 3. MayoClinic.org 4 4. WOCN Core Curriculum Ostomy Management, Wolters Kluwer, 2016 tral and peripheral nervous system, urinary tract. This extra tissue pre- skin level. 5. WOCN Pediatric Ostomy Care, Best practice for Clinicians, 2011 which innervates the bladder.4 vents the urethra from properly 6. Wikipedia.org 7. NIH US National Library of Medicine https://www.nim.nih.gov/ 8. StomaWise UK 9. KidsHealth from Nemours http://kidshealth.org 10. http://www.uhs.nhs.uk 11. http://www.childrenshospital.org 12. GI Society 13. Pullen, R.L.,Mathias, T. Fostering therapeutic nurse-patient relationships Nursing Made Incredibly Easy!: May-June 2010 - Volume 8 - Issue 3 - p 4 14. www.healthline.com

70 Paediatric stoma care Global best practice guidelines for neonates, children and teenagers

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