Long-term Follow-up, Patient Satisfaction, and Quality of Life for Patients With Kock’s Continent Ileostomy

Abstract

BACKGROUND: Continent ileostomy is a solution for patients after proctocolectomy. OBJECTIVE: The aim of this study was to assess the long-term complications and failure rate alongside patient satisfaction, function, and quality of life for patients with a continent ileostomy. DESIGN: This was a retrospective, descriptive cross-sectional study. SETTINGS: All patients were operated in 1 center between 1980 and 2016. PATIENTS: A total of 85 patients received a de novo continent ileostomy in our institution. Sixty-nine patients (80%) had ulcerative colitis, 12 (14%) had Crohn’s disease, 2 had indeterminate colitis, and 1 each had familial adenomatous polyposis and anal atresia. MAIN OUTCOME MEASURES: Medical charts were reviewed for reoperations and pouchitis. The 36-Item Short Form, Short Health Scale, and a local continent ileostomy questionnaire were used to assess quality of life, function, and satisfaction. RESULTS: After a median follow-up of 24 years, 67 patients (79%) underwent a total of 237 reoperations, of which 15 were conversions to end ileostomies, that is, failures. Fifty patients (59%) underwent repeat laparotomies, excluding loop ileostomy closures. Nipple detachment was the most common cause for repeat laparotomy, and fistulation was the most common cause for pouch removal. IPAA before continent ileostomy was associated with an increased risk for failure. Crohn’s disease was not associated with an increased risk for reoperation or failure. Forty-three patients (84%) reported that they were satisfied. Seventy patients were available for questionnaires, and 50 patients (71%) answered. There was no difference in the 36-Item Short Form between the continent ileostomy population and an age-matched control population. LIMITATIONS: The retrospective, single-center design of the study alongside <100% response rate are to be considered limitations. CONCLUSIONS: Despite large numbers of complications, patients are generally satisfied with their continent ileostomies, and their quality of life is comparable to the general population. See Video Abstract at http://links.lww.com/DCR/B444. SEGUIMIENTO A LARGO PLAZO, SATISFACCIÓN DEL PACIENTE Y CALIDAD DE VIDA PARA PACIENTES CON ILEOSTOMÍA CONTINENTE DE KOCK ANTECEDENTES: La ileostomía continente es una solución para los pacientes después de una proctocolectomía. OBJETIVO: El objetivo de este estudio fue evaluar las complicaciones a largo plazo y la tasa de fracaso junto con la satisfacción del paciente, la función y la calidad de vida de los pacientes con una ileostomía continente. AJUSTES: Todos los pacientes fueron operados en un centro entre 1980 y 2016. DISEÑO: Estudio retrospectivo, descriptivo y transversal. PACIENTES: Un total de 85 pacientes recibieron una ileostomía continente de novo en nuestra institución. Sesenta y nueve (80%) pacientes tenían colitis ulcerosa, doce (14%) enfermedad de Crohn, dos, colitis indeterminada y uno de poliposis adenomatosa familiar y atresia anal respectivamente. PRINCIPALES MEDIDAS DE RESULTADO: Se revisaron los registros médicos en busca de reintervenciones y pouchitis. Se utilizó SF-36, escala de salud corta y un cuestionario de ileostomía continente local para evaluar la calidad de vida, la función y la satisfacción. RESULTADOS: Después de una mediana de seguimiento de 24 años, 67 (79%) pacientes fueron sometidos a un total de 237 reoperaciones, de las cuales 15 fueron conversiones para terminar con ileostomías, es decir, fracasos. 50 (59%) pacientes se sometieron a laparotomías repetidas, excluyendo los cierres de ileostomía en asa. El desprendimiento del pezón fue la causa más común de repetición de laparotomía y la fistulación fue la causa más común de retiro de la bolsa. La anastomosis anal de la bolsa ileal antes de la ileostomía continente se asoció con un mayor riesgo de fracaso. La enfermedad de Crohn no se asoció con un mayor riesgo de reoperación o fracaso. 43 pacientes (84%) informaron que estaban satisfechos. 70 pacientes estuvieron disponibles para cuestionarios y 50 pacientes (71%) respondieron. No hubo diferencia en SF-36 entre la población de ileostomía continente y una población de control de la misma edad. LIMITACIONES: El diseño retrospectivo y unicéntrico del estudio junto con una tasa de respuesta inferior al 100% deben considerarse limitaciones. CONCLUSIÓN: A pesar del gran número de complicaciones, los pacientes generalmente están satisfechos con sus ileostomías continentes y su calidad de vida es comparable a la de la población general. Consulte Video Resumen en http://links.lww.com/DCR/B444.

Long‐term outcome and quality of life after continent ileostomy for ulcerative colitis: A systematic review

“…Similarly, Risto et al found that age matched Swedish controls had similar SF‐36 scores to those with a Kock pouch. Risto et al reported 84% of patients were satisfied and 82% would choose a Kock pouch again [19].…”

“…A total of six studies published in seven articles looked at quality of life after a Kock pouch. Litle et al, Risto et al, and Berndtsson et al used the Short Form 36 Health Survey (SF‐36) [9, 11, 19] and Hoekstra et al used the SF‐36 with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Colorectal Cancer Module (EORTC QLC‐CR38) [15]. Castillo et al used a non‐validated quality of life questionnaire [14] and Lian et al used the Cleveland Global Quality of Life questionnaire (CGQL) [28].…”

“…Stomal stenosis after continent ileostomy was reported by six studies that investigated outcomes after Kock pouch. Rates of stenosis were noted to range from 2% [19] to 29% [18]. These studies reported that the stenotic segments could be dilated under local anaesthetic.…”

“…Surgical outcomes after the Kock continent ileostomy were reported in 13 studies [7][8][9][10][11][12][13][14][15][16][17][18][19]. Outcomes after BCIR were reported in two studies [20,21].…”

Salvage surgery for continent ileostomies (CI) after a first successful revision: more long-term blame on the reservoir than the nipple valve

“…In the authors view, not enough attention has been paid to the pouch itself and the influence of the underlying diseases. Thus, the discussion is mostly triggered by technical considerations only, albeit CD has largely been considered an unspecified risk factor for all complications and pouch failures, but based on limited and biased data [19][20][21]. The data presented here focusses exclusively on the analysis of all patients requiring revisions and is a unique large data set with (very) long follow-up.…”