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Long-term adjustment to living with an ileal pouch-anal anastomosis

Berndtsson, Ina E; Carlsson, Eva K; Persson, Eva I LU and Lindholm, Elisabet A (2011) In Diseases of the Colon and Rectum 54(2). p.9-193
Abstract

PURPOSE: The aim of this study was to describe long-term adjustment to life with an ileal pouch-anal anastomosis after surgery for ulcerative colitis, to investigate the relationship of pouch function to adjustment, and to explore factors affecting quality of life.

METHODS: A total of 369 patients treated between 1982 and 1993 were included in the study. Questionnaires designed to assess bowel (pouch) function (Öresland score) and disease-specific adjustment (Swedish version of the Ostomy Adjustment Scale), plus open-ended questions regarding quality of life, were sent by mail. Open-ended questions were analyzed with qualitative content analysis.

RESULTS: A total of 252 patients (84%) returned the disease-specific adjustment... (More)

PURPOSE: The aim of this study was to describe long-term adjustment to life with an ileal pouch-anal anastomosis after surgery for ulcerative colitis, to investigate the relationship of pouch function to adjustment, and to explore factors affecting quality of life.

METHODS: A total of 369 patients treated between 1982 and 1993 were included in the study. Questionnaires designed to assess bowel (pouch) function (Öresland score) and disease-specific adjustment (Swedish version of the Ostomy Adjustment Scale), plus open-ended questions regarding quality of life, were sent by mail. Open-ended questions were analyzed with qualitative content analysis.

RESULTS: A total of 252 patients (84%) returned the disease-specific adjustment questionnaire (141 males/111 females); median age, 51 (range, 26-77) years; median follow-up, 15 (range, 10-21) years after construction of the ileal pouch-anal anastomosis. High adjustment ratings were found for all statements, with the maximum median score of 6 on 28 of the 36 items. Items with the lowest ratings (median score, 5) pertained to things one would do if not for the IPAA, feeling free to travel, ability to enjoy sexual activities, comfort with body image, ability to laugh about awkward situations, confidence in the appliance, and whether the surgery helped with decisions on what things are most important in life. Participants with the lowest adjustment scores had low bowel function scores (P < .0001). Open-ended quality of life questions were answered by 150 patients (59.5%). The most important areas for quality of life were health, family, restroom access, and friends. Five categories emerged from the qualitative content analysis: living a "normal" life, food restrictions, physical limitations, influence of restroom access on social life, and being dependent on medical care.

CONCLUSIONS: Most participants had adjusted well to life with an ileal pouch-anal anastomosis and considered life to be normal. Good public restrooms were important for quality of life. Improving pouch function may help patients adjust to the postoperative state, but deeper understanding of reasons for poor adjustment despite good pouch function is needed.

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author
publishing date
type
Contribution to journal
publication status
published
keywords
Adult, Aged, Anal Canal, Anastomosis, Surgical, Colonic Pouches, Dependency (Psychology), Fatigue, Feeding Behavior, Female, Humans, Ileum, Interpersonal Relations, Life Style, Male, Middle Aged, Noise, Odorants, Proctocolectomy, Restorative, Quality of Life, Surveys and Questionnaires, Sweden, Toilet Facilities, Journal Article, Research Support, Non-U.S. Gov't
in
Diseases of the Colon and Rectum
volume
54
issue
2
pages
7 pages
publisher
Springer
external identifiers
  • scopus:78651404101
ISSN
0012-3706
DOI
10.1007/DCR.0b013e3181ff42d8
language
English
LU publication?
no
id
b3bb6a2d-05d0-469f-8906-ad45ec6783c7
date added to LUP
2017-03-14 16:29:49
date last changed
2017-03-19 04:41:01
@article{b3bb6a2d-05d0-469f-8906-ad45ec6783c7,
  abstract     = {<p>PURPOSE: The aim of this study was to describe long-term adjustment to life with an ileal pouch-anal anastomosis after surgery for ulcerative colitis, to investigate the relationship of pouch function to adjustment, and to explore factors affecting quality of life.</p><p>METHODS: A total of 369 patients treated between 1982 and 1993 were included in the study. Questionnaires designed to assess bowel (pouch) function (Öresland score) and disease-specific adjustment (Swedish version of the Ostomy Adjustment Scale), plus open-ended questions regarding quality of life, were sent by mail. Open-ended questions were analyzed with qualitative content analysis.</p><p>RESULTS: A total of 252 patients (84%) returned the disease-specific adjustment questionnaire (141 males/111 females); median age, 51 (range, 26-77) years; median follow-up, 15 (range, 10-21) years after construction of the ileal pouch-anal anastomosis. High adjustment ratings were found for all statements, with the maximum median score of 6 on 28 of the 36 items. Items with the lowest ratings (median score, 5) pertained to things one would do if not for the IPAA, feeling free to travel, ability to enjoy sexual activities, comfort with body image, ability to laugh about awkward situations, confidence in the appliance, and whether the surgery helped with decisions on what things are most important in life. Participants with the lowest adjustment scores had low bowel function scores (P &lt; .0001). Open-ended quality of life questions were answered by 150 patients (59.5%). The most important areas for quality of life were health, family, restroom access, and friends. Five categories emerged from the qualitative content analysis: living a "normal" life, food restrictions, physical limitations, influence of restroom access on social life, and being dependent on medical care.</p><p>CONCLUSIONS: Most participants had adjusted well to life with an ileal pouch-anal anastomosis and considered life to be normal. Good public restrooms were important for quality of life. Improving pouch function may help patients adjust to the postoperative state, but deeper understanding of reasons for poor adjustment despite good pouch function is needed.</p>},
  author       = {Berndtsson, Ina E and Carlsson, Eva K and Persson, Eva I and Lindholm, Elisabet A},
  issn         = {0012-3706},
  keyword      = {Adult,Aged,Anal Canal,Anastomosis, Surgical,Colonic Pouches,Dependency (Psychology),Fatigue,Feeding Behavior,Female,Humans,Ileum,Interpersonal Relations,Life Style,Male,Middle Aged,Noise,Odorants,Proctocolectomy, Restorative,Quality of Life,Surveys and Questionnaires,Sweden,Toilet Facilities,Journal Article,Research Support, Non-U.S. Gov't},
  language     = {eng},
  number       = {2},
  pages        = {9--193},
  publisher    = {Springer},
  series       = {Diseases of the Colon and Rectum},
  title        = {Long-term adjustment to living with an ileal pouch-anal anastomosis},
  url          = {http://dx.doi.org/10.1007/DCR.0b013e3181ff42d8},
  volume       = {54},
  year         = {2011},
}