Journal of Pediatric Urology (2012) 8, 17e19

The first 5-year follow up of distal antegradecontinence enema stomas

S.C. Blackburn*, J.R. Fishman, N. Geoghegan, K. Dave,N. Madden, M. Haddad

Chelsea and Westminster Hospital, London, UK

Received 28 October 2010; accepted 12 January 2011Available online 9 February 2011

KEYWORDSAntegrade enema;Faecal incontinence;ACE procedure;DACE procedure

* Corresponding author. c/o Mr HaddWestminster Hospital, 369 Fulham RoTel.: þ44 07968 586436.

E-mail address: sblackburn@docto

1477-5131/$36 ª 2011 Journal of Peddoi:10.1016/j.jpurol.2011.01.005

Abstract Aim: We investigated 5-year results of distal sites for antegrade continence enemas(DACE).Methods: Patients with DACE sites placed more than 5 years previously were identified. Detailsof procedures were obtained. Parents, and patients over 18, were telephoned and asked toanswer a standardised questionnaire.Results: 31 patients were identified. Median age at DACE placement was 7 years (range 3e20).Median follow up was 92 months (range 66e145). 22 tubes were placed endoscopically, 7 wereplaced at open surgery and 2 at laparoscopic surgery. 28 responses to the telephone question-naire were obtained. Of these, 15 were still using their DACE and 13 had stopped. Of those whohad ceased washouts: 7 reported resolution of symptoms, 4 had a colostomy, 1 an ileostomyand 1 patient had abandoned their DACE. In patients using their stoma, washouts took a medianof 5 min, with a median time to result of 25 min. 10 patients reported no soiling, 4 monthly and1 daily soiling. Median satisfaction score was 8/10 (range 1e10/10). 24 (85%) said that theywould recommend a DACE.Conclusions: This is the first report of 5-year follow up of a series of patients performing DACEwashouts. The results are encouraging.ª 2011 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.

Introduction

Since the concept of antegrade enemas was introduced byMalone et al. in 1990 [1], the use of stomas for continence

ad’s Secretary, Chelsea andad, London SW10 9NH, UK.

rs.org.uk (S.C. Blackburn).

iatric Urology Company. Publishe

enemas has developed to include patients with a variety ofunderlying diseases, including Hirschsprung’s disease, ano-rectal anomalies, spina bifida, slow transit constipation,sacral agenesis, tumours and trauma [2e4].

Initial results from right-sided antegrade continenceenema (ACE) sites demonstrated overall success rates ofaround 79%, with stomal stenosis being the most commoncomplication [5]. Studies focussing on long-term follow uphave reported that 18% of patients had abandoned use oftheir ACE site at 5 years [6] and 41% had abandoned use of

d by Elsevier Ltd. All rights reserved.

18 S.C. Blackburn et al.

their ACE at 10 years [7]; late failure may be a concern forthis group of patients, particularly as they move frompaediatric into adult services.

The use of distal, left-sided, sites for antegrade washouts(DACE stomas) has beenmore recently described [8e11]. Thepotential attractions of the left colon are shorter washouttimes, the use of less enema fluid, less pain during washouts,and the fact that the enema is assisted by gravity. It is knownthat 37% of patients have delay principally sited in the rectosigmoid region, and so these patients are likely to benefitfrom washouts of the left colon only [12]. A recent compar-ative study has demonstrated a similar efficacywhen left andright colonic ACE sites are compared [13].

We have previously described a percutaneous, endo-scopic, technique for placement of a tube in the left colonfor left-sided antegrade washouts [14]. Our initial resultsfrom this process were encouraging; 90% of patients wereclean between washouts at 6 months [15].

Given that we have an enlarging cohort of patients whohave had a DACE site placed, we sought to investigatelonger term outcomes in this group of patients.

Methods

Operating theatre records and the hospital operatingtheatre data system were used to identify patients who hadhad a DACE site placed more than 5 years ago. The detailsof the indications for the procedure and operative detailswere obtained from the case notes.

Patients, or their parents if aged under 18, were thencontacted by phone, by an author not involved in theircare, and asked to answer a standardised questionnaire.Patients were asked whether they were still using theirDACE site, if they had ceased use why, how often washoutswere taking place, the duration of the washout, solutionused and the time to result, whether they experienced painon washouts, the frequency of soiling episodes betweenwashouts, and whether they would recommend the proce-dure to another child/parent in the same position. Patientswere also asked to give details of any problems they hadhad with their DACE sites. Overall patient satisfaction wasassessed using an analogue scale of 1e10.

Results

Thirty-one patients were included in the study. The medianage at insertion of the DACE tube was 7 years (range 2e17years). Themedian length of follow up was 92months (range66e145 months). The indications for insertion were idio-pathic constipation (19), spina bifida (6), anorectal anomaly

Table 1 Numbers of patients using their DACE sites, whose sya DACE, by diagnostic category.

Diagnosis Using Re

Idiopathic 10 4Spina bifida 4 0Hirschsprung’s 1 2Anorectal 0 1

(3) and Hirschsprung’s disease (3). Patients had left-sidedcolonic delay confirmed eitherwith nuclear transit studies orradio-opaque markers. Two patients in the study had hadprevious right-sided ACE stomas placed. One patient witha DACE went on to have a right-sided ACE placedsubsequently.

Twenty-two tubes were placed using our previouslydescribed endoscopic technique, seven tubes were placedat open surgery and two were placed laparoscopically.

Patients with endoscopically placed DACE sites initiallyhad a 12-Fr FRECA PEG tube placed, followed by conversionto a ‘mini’ button device at 3 months postoperatively. Thesame procedure was adopted for those patients whose tubeswere placed laparoscopically. Patients with a DACE siteconstructed at open surgery had a primary button placed.

Washouts were commenced with 20 ml/kg of normalsaline, with the addition of phosphate enema solution if thiswas ineffective. Patients who were refractory to saline andphosphate enema solution had bisacodyl solution added tothe washout.

Five patients had an early infection at the DACE sitewhichrequired antibiotic treatment, one patient had a pneumo-peritoneum conservatively managed, and a child withHirschsprung’s disease had an episode of enterocolitis on thesame admission.

Late complications recorded were granulation tissue (6),displacement of the tube or button (4), stomal leakage (3),DACE site infection (1) and bleeding from the site of thestoma (1).

Of the patients included, 28 responded to our telephonesurvey. Of these, 15 patients were still using their DACEsites and 13 had ceased use. Of those patients who hadceased use: 7 had resolution of their symptoms; 4 hadundergone a colostomy because of failure of treatment; 1patient had undergone an ileostomy; and 1 had ceasedbecause they disliked their stoma. Table 1 shows thesuccess rates of the DACE sites by diagnosis.

Of those patients still using their stoma, washouts tooka median of 5 min, with a median time to result of 25 min. Ofthese patients, 10were completely clean betweenwashouts,4 experiencedmonthly soiling and1experienceddaily soiling.

The median satisfaction score was 8 (range 1e10) and 24patients said that they would recommend a DACE to a child/parent in the same position as themselves. A recurringtheme in conversations with patients and parents was thatlocal services were inadequately set up to care for patientswith DACE sites, requiring multiple trips to a tertiary centrefor minor problems. Patients who had transitioned intoadult services frequently told us that their doctors wereoften completely unaware of the use of their DACE sites,and they felt that they were inadequately cared for.

mptoms had resolved and who had failed management with

solved Failed Total

4 181 50 31 2

First 5-year follow up of DACE stomas 19

Discussion

We have described a cohort of patients who underwentplacement of DACE sites over 5 years ago. When comparedto previous series describing antegrade washouts, a rela-tively high proportion of patients had idiopathic con-stipation [1,2,5]; this mirrors a more recent recognitionthat antegrade washouts can be of value to those patientswho have failed medical management of their constipation,and for whom antegrade enemas provide an attractivealternative to repeated rectal therapy and ongoing faecalincontinence [16,17].

Our data suggest a similar pattern to the use of DACE sitesto that described for proximal ACE sites, in that the numberof patients continuing to use them decreases over time. Ofthose still using their DACE site, themajority experienced nosoiling between washouts, and washout duration was rela-tively short, with a median of 25 min to achieve a result. It isalso important to note that of those patients who had ceasedusing their stomas, 7 had done so because their symptomshad resolved. Seventeen patients in our series therefore hadcomplete resolution of their symptoms, either via continueduse of the DACE or through resolution of symptoms. Furtherfour patients were experiencing soiling only on a monthlybasis, leading to an overall success rate of 75% at 5 years,which compares favourably with those stated for right-sidedACE sites over a similar period. A greater proportion of ourpatients achieved independent continence than in seriesreporting right-sided stoma results.

The fact remains, however, that an unsatisfactory resultwas achieved in 25% of patients, with conversion to a formalstomaor continuing symptoms being the outcome.Onepatientalso required a right-sided ACE site because left-sided wash-outs were ineffective.

The reports from our patients that local and adult serviceswere inadequate inmeeting their needswerealso of concern,mirroring the findings of other long-term follow up studies ofpatientswithACEsites.Thegroupofpatientswith spinabifidain our series anecdotally report better followup, as their careis continued within the same hospital trust in a multidisci-plinary clinic,withcontinued input fromourcontinencenursespecialist when required. Clearly, as the number of patientswithACE/DACEsites increases, theneed forongoing followupof these stomas in adult services will increase.

Conclusions

Our 5-year follow up of patients undergoing DACE washoutshas yielded encouraging results, particularly given theminimal access nature of the majority of the procedures.There is a clear need for improved local support of thesepatients and for improvedcareas they are transferred toadultservices.

Funding source

None declared.

Conflict of interest

None declared.

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