THE MALONE ANTEGRADE COLONIC ENEMA ISOLATED ORASSOCIATED WITH UROLOGICAL INCONTINENCE PROCEDURES:

EVALUATION FROM PATIENT POINT OF VIEW

M. O. BAU, S. YOUNES, A. AUPY, M. BERNUY, M. J. ROUFFET, D. YEPREMIAN AND

H. B. LOTTMANNFrom the Urotherapy Unit, Fondation Ellen Poidatz, St-Fargeau-Ponthierry, and Departments of Pediatrics and Pediatric Urology,

Hopital St-Joseph, Paris, France

ABSTRACT

Purpose: Fecal and urinary incontinence in patients with congenital or acquired spinal corddefects represents a handicap that impairs chances of integration in society. Associated with themanagement of urinary incontinence, the Malone antegrade colonic enema is a generally suc-cessful procedure for resolving refractory fecal incontinence. We report the results of the evalu-ation of this technique from the patient perspective.

Materials and Methods: A survey was conducted among 19 patients who had undergone aMalone procedure, combined in 14 with urological surgical intervention for urinary incontinence.Patients completed a questionnaire either by mail or during an interview with a urotherapynurse and/or a psychologist. Questions concerned patient opinion about the quality of preoper-ative information, perioperative period, stoma, functional result and overall satisfaction. Thepsychological impact of the procedure was also evaluated during the interviews. No complicationoccurred related to the Malone procedure or stomal stenosis, and a perfect functional result wasachieved in 17 patients, 1 of whom had occasional leakage through the stoma.

Results: Of the 19 patients in the study 2 who have abandoned using the Malone procedure,including 1 with a poor result and 1 with a good functional result, did not return the question-naire. The remaining 17 patients believed they had received adequate preoperative informationand expressed no specific complaint about the perioperative period. The 15 with the stoma in theumbilicus were satisfied, although 3 young patients were temporarily disturbed by catheterizingthe umbilicus and 2 with the stoma in the right fossa iliaca were disappointed. The 15 patientswho had a perfect functional result recognized great improvement in quality of life but 13complained of pain (12) and/or excessive duration of the procedure (9). The patient with a poorfunctional result and the other with occasional stomal leakage would not consider the procedureagain. These 2 patients had durable postoperative depression while 3 others who ultimatelyachieved a good functional result experienced temporary depression.

Conclusions: The Malone procedure generally meets the expectations of patients but it isconsidered by a majority as painful and lengthy. The umbilicus is the preferred stoma site butmay prove to be disturbing in young patients. Abandonment of the procedure and postoperativedepression experienced by some patients, despite a good functional result, deserve better pre-vention.

KEY WORDS: fecal incontinence, umbilicus, stomas, appendix, enema

Undoubtedly the antegrade colonic enema (ACE) as de-scribed by Malone et al has revolutionized the managementof fecal incontinence in children and adolescents.1 Most au-thors mention the considerable improvement in quality of lifeas confirmed by previous studies addressing specifically thisissue.2–4 However to achieve fecal continence the Malonesurgical procedure involves potential morbidity, a scar, anabdominal stoma and an enema several days a week. Gener-ally a satisfactory functional result is achieved but somepatients still have soiling, the procedure completely fails inothers and others do not use the Malone despite a goodfunctional result. We evaluate the Malone procedure fromthe patient point of view.

MATERIALS AND METHODS:

A questionnaire was written jointly by a urotherapy nurse,a psychologist and a pediatric urologist (see Appendix). Thequestionnaire included 20 questions related to quality of

information received by the patient about the Malone proce-dure (6 questions), perioperative period and stoma (5 ques-tions), functional result (4 questions) and satisfaction withthe procedure (5 questions). The questionnaire was eithermailed to the patient or completed during a live interviewconducted by the urotherapy nurse and/or psychologist. Thepediatric urologist never participated in the interview. Al-though there was no standardized questionnaire concerningthe psychological impact, patient perception of the procedurewas evaluated via answers to certain questions that ad-dressed this issue and during an indirect interview.

The study included 7 children and 8 adolescents, 5 to 17years old, and 4 adults 20 (3) and 40 (1) years old. There were14 males and 5 females. All patients suffered from severefecal incontinence associated with a congenital or acquiredspinal cord defect, and a Malone procedure was recom-mended during a clinic visit involving parents, surgeon, re-habilitation physician and urotherapy nurse. The operationwas described using drawings, photographs of the stoma and

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video, and when if desired patients could meet a patient whoperformed ACE. The appendix was available to create theconduit in 16 cases and in 3 it was fashioned from a shortsegment of ileum according to the Monti principle.5 A proce-dure on the urinary tract was performed simultaneously toachieve urinary continence in 14 cases, including auto-augmentation in 2, sling in 1, endoscopic injection of Deflux*in 2, auto-augmentation plus sling in 1, ileocystoplasty in 4,ileocystoplasty plus Mitrofanoff in 3 and Mitrofanoff in 1.The antireflux mechanism consisted of partial implantationof the tube or appendix in a cecal band in 9 cases or plication ofthe cecum around the base of the appendix to create a valve in10. The stoma was placed in the umbilicus in 15 patients,including 2 who had a Malone and Mitrofanoff stoma in theumbilicus (fig. 1).

To create the umbilical stoma, the technique was adaptedfrom that of Snyder,6 and consisted of a U shaped incisionaround the left hemicircumference of the skin of the umbili-cus on its inner aspect. However, the umbilical flap was notmobilized and the spatulated appendix was sutured to theedges of the incision. When necessary the cecum was mobi-lized and the appendix or tube was either tunneled under theposterior rectus sheath and peritoneum as described byKhoury et al7 or fixed to the peritoneal lining of anteriorabdominal wall with interrupted sutures. In 2 cases thecombined Malone and Mitrofanoff stoma was positioned inthe right iliac fossa using a simple V skin flap as it wastechnically impossible to place it in the umbilicus. Irrigationswere started on postoperative day 5 with increasing volumeto reach ultimately 20 ml./kg. of body weight (maximum1,200 ml.). No acute postoperative complication occurred andall the patients were instructed to catheterize the stomaand perform the enema by a nurse specialist. Patients per-formed ACE daily or every 2 days with tap water. Even ifthey did not perform a daily enema, they are instructed tocatheterize the stoma once a day with a 10 or 12Fr catheter.

RESULTS

At a followup of 6 months to 3 years 16 patients had aperfect functional result, which was immediate in 10 andachieved only after 3 months to 1 year of trial and error in 6.Of the remaining 3 patients 2 never achieved satisfactoryfecal continence and 1 has occasional stomal leakage when hedoes not perform ACE daily. The duration of the procedurewas 30 minutes to 1 hour (mean 45 minutes). No late com-plication occurred or stomal stenosis and to date no patienthas required a reoperation related to the Malone procedure.ACE was abandoned by 1 patient who never achieved conti-nence and 1 who is psychologically unstable and, despite aperfect functional result, prefers to wear pads and remainincontinent than perform routine enemas. Nevertheless, thelatter patient regularly catheterizes the stoma to keep itfunctional. This patient as well as another who had an asso-ciated ileocystoplasty still have urinary incontinence, mainlyas they are poorly compliant with regular clean intermittentcatheterization. The girl who had a Deflux injection was stillwet and subsequently underwent a sling procedure. All otherpatients are dry.

The questionnaire was completed during an interview in15 cases and by mail in 2. In 3 cases due to intellectualinability (1) or young age (2) the questionnaire was com-pleted by the mother who performs the enema. The 2 patientswho abandoned ACE did not return the questionnaire. All 17patients indicated that they had received appropriate infor-mation from the medical team about the procedure, although2 thought that they would pass stools through the umbilicus,and none expressed a specific complaint about the perioper-ative period. However, 10 patients mentioned anxiety relatedto (more or less associated) the stoma, pain when they would

catheterize the stoma and functional outcome. All 15 patientswith an umbilical stoma were satisfied by the cosmetic re-sult, although 3 young patients were disturbed and fright-ened by having to introduce a catheter into the umbilicus toperform the enema. The 2 patients with the stoma in theright iliac fossa were disappointed and would have preferredan umbilical stoma. Except for the patient who did notachieve continence, all were satisfied with the procedure,although 13 complained of pain and/or excessive duration ofenemas (9) (in this latter group the ACE procedure lasted aminimum of 45 minutes).

The patient with a poor result and the other with occa-sional stomal leakage would not consider the procedureagain. Although 7 patients expressed clearly that the proce-dure had had a positive impact on life 5 others experienceddepression postoperatively associated with various degrees ofnervous exhaustion, tears, auto-discrediting feelings, searchof loneliness and introversion. This phase of depression wastemporary in 3 who ultimately achieved a good functionalresult and durable in 2 (1 with a poor result and 1 withoccasional stomal leakage). Through the interviews it ap-peared that at least 5 other patients experienced depressivemoods postoperatively.

DISCUSSION

Fecal incontinence is a major handicap that dramaticallyimpairs integration in society, and induces many inhibitionsdue to poor self-esteem and lack of independence. Also it isuseless to resolve urinary incontinence and not resolve asso-ciated fecal incontinence at the same time. Conservativemanagement of fecal incontinence includes restrictive diet,abdominal massage, combination of constipating agents andstimulants administered orally or by suppositories, manualdisimpaction and rectal evacuation, and fleet enemas. Whenthese techniques fail, retrograde colonic enemas adminis-tered via a continence catheter as described by Shandlingand Gilmour can be offered.8 Although these techniquesprove to be efficient in 50% to 85% of cases,2 they fail in asignificant number of cases. Also, some patients are depen-dent on a family member or caretaker for management ofincontinence. This dependence, as well as restrictive diet andrectal maneuvers, if they are tolerated in infancy, are oftennot accepted by adolescents who are then offered ACE.

The principle is to perform regular antegrade enemasthrough a continent appendicocecostomy. The appendix isimplanted in the cecum in a reverse mode or orthopically.When no appendix is available other conduits have beenfashioned using cecal flaps, vascularized gastric tube andmore recently a detubularized, retubularized ileal tube asdescribed by Monti et al.5 The prevention of reflux of fecesand gas is achieved by placing the conduit within a tunnelfashioned from the cecal wall or by invaginating the base ofthe appendix to create a valve mechanism. The tip of the* Q-Med Corp., Uppsala, Sweden.

FIG. 1. Malone and Mitrofanoff stoma concealed in umbilicus

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appendix or conduit is brought to the skin in the lower rightquadrant of the abdomen or in the umbilicus. Various typesof flaps are used to create a cosmetic stoma and limit therisk of stenosis.

Compared to other methods of management of fecal incon-tinence, ACE has several advantages, including no medica-tion or restrictive diet, and the colon is usually empty, thusreducing bacterial infections (fig. 2). Generally the patientdoes not need assistance to perform enemas. Only 3 patientsin our series were assisted by the mother because of youngage (2) and low intellectual abilities (1). ACE is generallyefficient with a success rate (patient achieving perfect conti-nence) of 70% to 100%.2–4, 9–11 According to Malone, the bestsuccess rates are achieved in patients with Hirschsprung’sdisease (91%), anorectal anomalies (89%) and spina bifida(84%); and poorer success rates (62% to 69%) are obtainedwith constipation and other conditions.12

Despite the recognized success and advantages of ACE, asurgical procedure is required with potential morbidity, andpatients are reluctant about new scars and the stoma. A caseof infection of an artificial urinary sphincter consecutive to aMalone procedure was reported by Goepal et al,13 and con-tamination of a ventriculoperitoneal shunt although not re-ported is a potential risk. To reduce the size of the scar,laparoscopic procedures have been described without14 orwith3 confection of an antireflux mechanism. When anotherprocedure such as ileocystoplasty is scheduled with ACE,laparoscopy can be used as a first step to mobilize the appen-dix, cecum and ileum, free intestinal adhesions and reducethe size of the scar.15 Obviously, according to our study, theumbilicus is the preferred stoma site as the orifice is literallyinvisible (fig. 3). The umbilicus also has multiple advantages

which make it the preferred stoma site by many.6, 7, 16, 17 Inaddition to the cosmetic aspect, the umbilicus is at the pointof convergence of 4 arteries and, thus, in a well vascularizedarea, it is easy to identify and is easily accessible even fortetraplegic18 and obese patients.

However, in young patients the umbilicus is of major im-portance affectively and for body image, and to create astoma in this area may prove to be disturbing. Our 3 patientsdiscussed this negative experience extensively with the treat-ing team. Our 2 patients who had the stoma in the rightlower quadrant of the abdomen also were disappointed. How-ever, we have recently started to perform VQZ plasty in suchcases with excellent cosmetic results.19 The main long-termcomplication associated with these continent catheterizablestomas is stenosis. We have not observed any stenosis in ourseries of umbilical stoma with a rather short followup but wehave observed stenosis associated with the Mitrofanoff stomasituated at other sites. Daily catheterization of the stoma is im-portant and the umbilicus according to our experience is thebest location to prevent stomal stenosis even if this factis debated in the literature.17, 20

Although they recognized that quality of life was improvedby the Malone procedure, a significant number of our pa-tients considered ACE a painful and lengthy procedure, and1 abandoned the enemas despite a successful functional re-sult. This case is not isolated as similar cases have beenreported by Shankar et al (4 of 40, 10%),4 Hensle et al (2 of27, 7.5%)11 and Wilcox and Kiely (3 of 36, 8.33%).10 To ourknowledge, pain during ACE has not been reported but thisdoes not seem to have been specifically addressed. Painseems to be essentially related to the acute colonic distention,and reducing infusion speed induces a loss of the washouteffect. The duration of ACE for our patients is 30 to 60minutes (mean 45) which may appear fastidious on a daily orevery other day basis. However, according to our experience,this is the price to pay for a perfect result. Adding phosphateor increasing the saline water volume has been pro-posed2, 12, 13 but this is potentially dangerous and accidentshave been reported.9, 13, 21 Moreover, these methods did notsignificantly reduce the duration of the procedure. Othersolutions to reduce pain and make the procedure shorter areneeded, and may include implantation of the appendix in thetransverse or left colon as recently proposed by Lemelle22 andMouriquand23 et al.

Finally, of our patients 5 experienced depression postoper-atively including 3 who had a perfect functional result. TheMalone procedure has a positive impact on resolving fecalincontinence but it also has a negative impact as it modifiesbody image and makes permanent the handicap as the pa-tient does not eliminate feces naturally but by introducing acatheter in the abdomen. Even when there is no obviousdepressive period, ACE seems to induce a significant psychicsituation, as it relates to the handicap problems and leadsthe patient to a new narcissic position. The body image andself-perception are subject to an adaptation process inducinganxiety or even anguish. The patient must renounce thehabit of using a natural function and adopt a new technicalway of evacuating feces. The patient-to-body relationship ismodified because of this technical maneuver. This periodbecomes a kind of “mourning phase” in which depression orat least depressive moods are observed. These psychic eventscan affect every patient in various degrees and are compati-ble with the expressed satisfaction due to the benefits of theMalone procedure. Generally after a period of adaptationwhich can last several months, the patient can mobilize moreenergy towards projects and find a positive global balanceexcept probably for those who do not achieve a good func-tional result. Since this evaluation, all of our candidates for aMalone or Mitrofanoff procedure have 1 or several interviewswith our psychologist to manage better, if possible, this po-tential postoperative phase of depression.

FIG. 2. Malone ACE. Feces are pushed from cecum to anus. At endof procedure colon is empty for several hours.

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CONCLUSIONS

According to patient perspective the Malone procedure isconsidered effective for resolving severe rectal incontinenceand, thus, improving quality of life. The umbilicus is thepreferred stoma site but may prove disturbing to young pa-tients. Also, a significant number of patients reported thatthe procedure was lengthy and painful, and specific solutionsto these complaints must be found. Finally postoperativedepression experienced by some patients and which wassometimes durable needs further evaluation and prevention.

APPENDIX: QUESTIONNAIRE

Questions 6, 7, 8, 10, 13, 15, 18, 20 concern more particu-larly the patient’s perception of the Malone procedure.

1) Can you name your handicap?When and at what age have you been proposed theMalone procedure?

2) Had you heard of that procedure before? If yes, bywhich source?

3) How was the procedure explained to you? (drawings,photograph pictures, video, interview with another pa-tient . . .)

4) Did you understand what was the aim and the princi-ple of the Malone procedure when it was proposed toyou?

5) Now that you have been operated upon, do you con-sider that you had well understood the procedure? Ifno, what would you suggest to improve the informationdelivered to the patients?

6) Who has decided that the procedure should be per-formed? (yourself, your family, your doctors . . .)

7) When you were in hospital, did you feel anxiety? If yes,what was the cause of your anxiety (anesthesia, pain,stoma, catheterization, scar, result on continence . . .)

8) Did you speak about your anxiety with someone? Ifyes, to whom? (surgeon, nurse, psychologist, family,friend . . .)

9) Where is your stoma?umbilicusiliac fossa

10) Are you happy with the site of your stoma?

11) Would you have preferred another site? If yes, whichsite?

12) Did you experience difficulties with your stoma?If yes, which (difficulty to catheterize, cosmeticaspect, leakage . . .)

13) In your opinion, to perform your enema iseasydifficult

14) Do you experience significant pain associatedwith the Malone procedure?

at the introduction of the catheterduring the enemawhen passing the stoolswhen removing the catheter

15) How much time do you spend to perform yourenemas? Do you consider that it is

normallongmuch too long

16) Since you are performing antegrade colonic ene-mas, are you:

perfectly continent with fecesstill partly incontinent (soiling)still incontinent

17) How long since you have been operated upon?Are you satisfied with the Malone proce-dure?How long did it take until you were fully

satisfied?

18) Do you consider that the surgical procedure wasbeneficial to you? (explain your answer)

19) Do you still use your stoma? If not, why? (proce-dure does not work, is painful, too fastidious, oth-er . . .)

20) If you were offered the Malone procedure nowthat you have experienced it, would you acceptit? (explain your answer)

REFERENCES

1. Malone, P. S., Ransley, P. G. and Kiely, E. M.: Preliminaryreport: the antegrade continence enema. Lancet, 336: 1217,1990

2. Schell, S. R., Toogood, G. J. and Dudley, N. E.: Control of fecalincontinence: continued success with the Malone procedure.Surgery, 122: 626, 1997

3. Ellsworth, P. I., Webb, H. W., Crump, J. M. et al: The Maloneantegrade colonic enema enhances the quality of life in chil-dren undergoing urological incontinence procedures. J Urol,155: 1416, 1996

FIG. 3. Large Malone stoma concealed in umbilicus in 16-year-old adolescent is easy to catheterize

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4. Shankar, K. R., Losty, P. D., Kenny, S. E. et al: Functionalresults following the antegrade continence enema procedure.Br J Surg, 85: 980, 1998

5. Monti, P. R., Lara, R. C., Dutra, M. A. et al: New techniques forconstruction of efferent conduits based on the Mitrofanoff prin-ciple. Urology, 49: 112, 1997

6. Snyder, H. M.: Technical points on appendicovesicostomy. DialogPediatr Urol, 19: 5, 1996

7. Khoury, A. E., Van Savage, J. G., McLorie, G. A. et al: Minimiz-ing stomal stenosis in appendicovesicostomy using the modi-fied umbilical stoma. J Urol, 155: 2050, 1996

8. Shandling, B. and Gilmour, R. F.: The enema continence cathe-ter in spina bifida: successful bowel management. J PediatrSurg, 22: 271, 1987

9. Driver, C. P., Barrow, C., Fishwick, J. et al: The Malone ante-grade colonic enema procedure: outcome and lessons of 6 yearsexperience. Pediatr Surg Int, 13: 370, 1998

10. Wilcox, D. T. and Kiely, E. M.: The Malone (antegrade colonicenema) procedure: early experience. J Pediatr Surg, 33: 204,1998

11. Hensle, T. W., Reiley, E. A. and Chang, D. I.: The Maloneantegrade continence enema procedure in the management ofpatients with spina bifida. J Am Coll Surg, 186: 669, 1998

12. Malone, P. S. J.: The MACE procedure. Dialog Ped Urol, 22: 2,1999

13. Goepel, M., Sperling, H., Stohrer, M. et al: Management of neu-rogenic fecal incontinence in myelodysplastic children by amodified continent appendiceal stoma and antegrade colonicenema. Urology, 49: 758, 1997

14. Lynch, A. C., Beasley, S. W., Robertson, R. W. et al: Comparisonof results of laparoscopic and open antegrade continence en-ema procedures. Pediatr Surg Int, 15: 343, 1999

15. Cadeddu, J. A. and Docimo, S. G.: Laparoscopic assisted conti-nent stoma procedures: our new standard. Urology, 54: 909,1999

16. Bissada, N. K.: Favorable experience with a simple technique tocreate a concealed umbilical stoma. J Urol, 159: 1174, 1998

17. Levitt, M. A., Soffer, S. Z. and Pena, A.: Continent appendicos-tomy in the bowel management of fecally incontinent children.J Pediatr Surg, 32: 1630, 1997

18. Sylora, J. A., Gonzalez, R., Vaudhn, M. et al: Intermittent self-catheterization in quadriplegic patients via a catheterizableMitrofanoff channel. J Urol, 157: 48, 1997

19. Mor, Y., Quinn, F. F., Carr, B. et al: Combined Mitrofanoff andantegrade continence enema procedures for urinary and fecalincontinence. J Urol, 158: 192, 1997

20. Woodhouse, C. R. J.: The MACE procedure and newer options forcreating a Mitrofanoff Channel. Dialog Pediatr Urol, 22: 7,1999

21. Craig, J. C., Hodson, E. M. and Martin, H. C.: Phosphate enemapoisoning in children. Med J Aust, 160: 347, 1994

22. Lemelle, L., Barthelme, H. and Schmitt, M.: Prise en chargechirurgicale de l’incontinence urinaire et fecale dans les trou-bles sphincteriens neurologiques de l’enfant et de l’adolescent.Ann Urol, 33: 343, 1999

23. Mouriquand, P., Mure, P. Y., Feyaerts, A. et al: The left Monti-Malone. BJU, suppl., 85: 65, 2000

DISCUSSION

Dr. Christopher Woodhouse. What these authors purport to do is extremely difficult and particularly difficultin children. I really do not think that this paper has actually addressed quality of life at all. I think theprocedures are absolutely excellent. This study has really looked at what the patients think about the stoma,which is really the easy part of quality of life. And they do not, to my mind, address the question of quality of life.The age range of the children was enormous. And if you think of the difference between a 5-year-old and a13-year-old child, the questions that are appropriate to a 5-year-old are not appropriate to a 13-year-old, and viceversa. I think it would be helpful to study quality of life but perhaps this society could lead the way inestablishing criteria of quality of life that are separate from items related to the stoma.

Dr. Henri Lottmann. I think that the stoma is part of the quality of life, and it is also part of the fact that thepatient accepts or refuses the procedure. I think it is important that it is not visible and really these patients hatescars. The orthopedic surgeons already put a lot of scars on them. And really they like the idea that the stomais absolutely invisible. We really ask the patient what they felt, and it is obvious that 100% of them are fullysatisfied with the Mitrofanoff. There is no doubt of that. However, for the Malone, I think the quality of life isimproved considerably but as I have mentioned also most of them find it fastidious and painful.

Unidentified. The things related to the stoma are not quality of life issues. If you take quality of life surveysof adults it is almost impossible to show that there is a difference between an ileal conduit and a continentdiversion on some aspects of quality of life, particularly those related to making money, your relationship inbusiness and the activities of everyday life. But there is a difference in social aspects such as relationship withyour family and wife or husband, and so on. Quality of life does not mean measuring whether your operation isa success. It means measuring a huge range of aspects of quality of life. That is where I think you should leadthe way rather than saying the operation is good, and, therefore, the quality of life is better.

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