Ina Berndtsson

Sexuality in patients with ulcerative colitis before and after restorative proctocolectomy: a prospective study

Background: The purpose of this study was to assess sexuality in patients with ulcerative colitis (UC), before and one year after an ileal‐pouch anal anastomosis (IPAA). Methods: Group I comprised 14 medically treated patients (7 M) and Group II comprised 29 patients (18 M), operated with colectomy and ileostomy, with preservation of the rectum. Patients were interviewed about desire, excitement and general sexual satisfaction before and one year after the IPAA operation. Results: Most of the patients had restarted sexual activity ≤3 months after surgery. Sexual desire and desire for intercourse had not changed from before the IPAA operation. In Group I, one woman suffered from dyspareunia both before and after the IPAA. In Group II, three women had dyspareunia before the IPAA and four after surgery. Erection and ejaculation were normal in all men before the IPAA operation. After IPAA, one man in Group I and two men in Group II had loss of ejaculation. In Group I, 10 out of 14 patients were satisfied with their sexual life both before and after the IPAA. In Group II the corresponding figures were 15 out of 28 before and 22 after IPAA surgery. Conclusions: A third of the patients stated that they were dissatisfied with their sexual life before IPAA. Although a few patients experienced sexual imperfections such as loss of ejaculation and dyspareunia, the majority of patients in both groups considered that the overall general satisfaction with their sexual life had normalized considerably after surgery.

Quality of life before and after proctocolectomy and IPAA in patients with ulcerative proctocolitis--a prospective study.

Objective  The principal aim of the present investigation was to study the general QoL and disease‐specific adjustment before, and one‐year after, operation with an ileal pouch anal‐anastomosis (IPAA) in a consecutive series of patients with ulcerative colitis (UC).

Stoma‐related complications and stoma size – a 2‐year follow up

Aim  The purpose of the study was to prospectively describe stoma configuration and evaluate stoma‐related complications and their association with possible risk factors.

Objective methods cannot predict anal incontinence after primary repair of extensive anal tears

BACKGROUND An increased awareness of anal incontinence after delivery tears has developed during the last years. The aim of this study was to compare complaints with the results of physiological methods in women with complete sphincter ruptures primarily repaired at delivery. METHODS Twenty-seven women, 16 with total rupture of the external anal sphincter and 11 who also had a ruptured internal anal sphincter were studied. Interviews on pelvic floor function, investigation with recto-anal manometry, single fiber EMG and anal endosonography were performed at 11.9 (2.5) months after delivery. Fifteen women vaginally delivered without sphincter rupture served as controls. RESULTS Pelvic floor dysfunction was admitted in 74%, in particular gas incontinence (59%). Maximum squeeze pressure was significantly reduced (p<0.01) compared to controls, while resting anal pressure was unaffected. Fiber density was increased in 81% of patients and 91% had detectable defects on endosonography. Neither the degree of rupture nor the presence of complaints significantly correlated to the objective methods. CONCLUSIONS A majority of women with primarily repaired anal sphincter ruptures at delivery were incontinent. Sphincter defects and signs of neuropathy could not precisely predict symptoms.

Concerns and quality of life before surgery and during the recovery period in patients with rectal cancer and an ostomy

PURPOSE: Rectal cancer is the most common reason for a person to undergo ostomy surgery. The aim of this study was to assess concerns and health-related quality of life (HRQOL) before surgery and during the first 6 months following ostomy surgery in the presence of rectal cancer. SUBJECTS AND SETTINGS: The sample comprised 57 patients at a university hospital in Gothenburg, Sweden. Their median age was 66 years (range, 30–87); 35 men and 22 women participated in the study. METHODS: Participants prospectively answered questionnaires preoperatively, and at 1, 3, and 6 months postoperatively. Concerns were assessed using the rating form of the Inflammatory Bowel Disease Patient Concerns, and HRQOL was evaluated using the 36-Item Short Form Health Survey. Results were compared with population norms. RESULTS: Participants expressed concerns associated with developing cancer, being a burden on others, and related to the uncertain nature of disease. Health-related quality of life scores dropped significantly in 6 of 8 domains when preoperative scores were compared to those obtained 1 month postoperatively, but scores improved at 6 months. There were significant differences between preoperative study group scores and population norms on physical and emotional role function, social function, and for mental health domains. Significant differences persisted when population norms were compared to study group scores 6 months following surgery on all these domains except mental health. Participants identified good relations with significant others, social and leisure activities, psychological issues, and health as important for maintaining QOL. Obstacles to maintaining QOL included fatigue, pain, illness-induced limitations in life, and worries over what their new life would entail. CONCLUSION: Surgical management of rectal cancer raises concerns and profoundly impairs QOL during the first several postoperative months.

Health-Related Quality of Life and Pouch Function in Continent Ileostomy Patients: A 30-Year Perspective

PURPOSEThe principal aim of this study was to assess long-term pouch durability and health-related quality of life in an original series of patients operated on with a continent ileostomy.PATIENTSData from 68 of 88 patients who had a continent ileostomy performed at Sahlgrenska University Hospital between 1967 and 1974 were analyzed. Median age at follow-up was 60 (range, 40–89) years and median follow-up was 31 (range, 29–36) years.METHODSPatients were sent a questionnaire on pouch function along with the Short Form-36 Health Survey 2.0. A random age-matched and gender-matched sample was drawn from the Swedish national Short Form-36 Health Survey norm database to compare with the patient group.RESULTSThe majority of the patients reported good physical condition and satisfactory pouch function. Patients evacuated the pouch a median of four times every 24 hours. Twelve patients (18 percent) had leakages. Forty-four patients (65 percent) had had at least one postoperative revision to restore continence. Generally minor peristomal skin irritation occurred in seven patients (10 percent). Patients with concurrent complaints (mostly age related) reported poorer health-related quality of life. Nevertheless, 78 percent of the patients rated their overall health as good, very good, or excellent. The patients’ Short Form-36 Health Survey scores were comparable to reference values.CONCLUSIONSAlthough revisional operations may be needed to restore continence, continent ileostomy has a good durability. Pouch function was satisfactory and patients’ satisfaction was high. Health-related quality of life levels were similar to those of the general population.

Long-Term Adjustment to Living With an Ileal Pouch-Anal Anastomosis

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.

Sexual function after failed ileal pouch-anal anastomosis ☆

BACKGROUND AND AIMS Failure of ileal pouch-anal anastomosis (IPAA) occurs in around 10% of the patients. Compared to patients with functioning pouches, health related quality of life is deteriorated after failure. Sexual function in patients with pouch failure is however poorly studied. The aim was to study sexual function in patients with pelvic pouch failure; patients with functioning pouches were used as controls. The hypothesis was that patients with pouch failure have worse sexual function. METHODS 36 patients with pouch failure were compared with 72 age and sex-matched controls with ulcerative colitis and functioning pouches. The patients answered a set of questionnaires concerning sexual function (Female Sexual Function Index [FSFI] and International Index of Erectile Function [IIEF]), body image (BIS-scale) and health-related quality of life (SF-36). RESULTS Both women and men with pouch failure scored lower than controls in the FSFI and IIEF questionnaires. However, none of the observations were statistically significant. The scores in the failure group (for both sexes) were below the cut-off level for sexual dysfunction. Scores for the BIS instrument were significantly lower for both sexes in the failure group. Women and men in the failure group scored lower than the controls in all domains of the SF-36, however statistically significant only for the social function domain in men. CONCLUSIONS The hypothesis, that a failed IPAA is associated with worse sexual function, was not confirmed. Compared to patients with functioning pouches, patients with pouch failure have inferior body image.

Ostomy-related complications after emergent abdominal surgery a 2-year follow-up study

PURPOSE: The aim of this study was to prospectively evaluate ostomy-related complications and describe ostomy configuration in patients undergoing acute abdominal surgery. SUBJECTS AND SETTING: The study sample comprised 144 patients with a median age of 67 years (IOR: 53.5-78 years) who underwent an intestinal ostomy as part of an acute abdominal surgical procedure. The research setting was the surgical and gynecological clinics at the Sahlgrenska University Hospital in Gothenburg, Sweden. METHODS: Ostomy configuration, diameter, height, and the presence of stomal and peristomal complications were assessed by a WOC nurse 1 to 2 times while in hospital, once at the ostomy outpatient clinic 2 weeks after discharge, and at 3, 6, 12, and 24 months following ostomy creation. RESULTS: The types of ostomies evaluated were end colostomy (58%), end ileostomy (18%), loop ileostomy (17%), and loop colostomy (7%). Most stomal or peristomal complications occurred within 1 year after surgery (31 of 57; 54.4%). Necrosis, separation, and stenosis were most common in patients with an end colostomy. Peristomal skin complications occurred in 45% of subjects during the first 6 months after surgery. The ostomys diameter decreased significantly during the hospital course and over the first 2 weeks following hospital discharge in patients with end colostomy (P< .0001), end ileostomy (P< .0081), loop ileostomy (P= .008), and loop colostomy (ns). Patients with a low ostomy had peristomal skin problems ranging between 21% and 57% over this time period. The frequency of using a pouching system that incorporated convexity was highest in the case of loop ileostomy, used in 67% at 6 months. CONCLUSION: During the first 2 weeks after discharge, the physical configuration of the ostomy evolves and the pouching system must be frequently adjusted by a WOC nurse. Stomal and peristomal complications are prevalent during the first 2 postoperative years and especially during the first 6 months.

Illness perceptions in relation to experiences of contemporary cancer care settings among colorectal cancer survivors and their partners

Illness is constituted by subjective experiences of symptoms and their psychosocial consequences. Illness perceptions concern peoples lay beliefs about understandings and interpretation of a disease and expectations as to disease outcome. Our knowledge about illness perceptions and coping in relation to the cancer care context among persons with colorectal cancer (CRC) and their partners is incomplete. The aim of the present study was to explore illness perceptions in relation to contemporary cancer care settings among CRC survivors and partners. The present research focused on illness rather than disease, implying that personal experiences are central to the methodology. The grounded theory method used is that presented by Kathy Charmaz. The present results explore illness perceptions in the early recovery phase after being diagnosed and treated for cancer in a contemporary cancer care setting. The core category outlook on the cancer diagnosis when quickly informed, treated, and discharged illustrates the illness perceptions of survivors and partners as well as the environment in which they were found. The cancer care environment is presented in the conceptual category experiencing contemporary cancer care settings. Receiving treatment quickly and without waiting was a positive experience for both partners and survivors; however partners experienced the information as massive and as causing concern. The period after discharge was being marked by uncertainty and loneliness, and partners tended to experience non-continuity in care as more problematic than the survivor did. The results showed different illness perceptions and a mismatch between illness perceptions among survivors and partners, presented in the conceptual category outlook on the cancer diagnosis. One illness perception, here presented among partners, focused on seeing the cancer diagnosis as a permanent life-changing event. The other illness perception, here presented among survivors, concentrated on leaving the cancer diagnosis behind and moving forward. The importance of illness perceptions among survivors, and the differences in illness perceptions between survivors and partners, should be recognized by healthcare professionals to achieve the goals of person-centered contemporary cancer care.Illness is constituted by subjective experiences of symptoms and their psychosocial consequences. Illness perceptions concern peoples lay beliefs about understandings and interpretation of a disease and expectations as to disease outcome. Our knowledge about illness perceptions and coping in relation to the cancer care context among persons with colorectal cancer (CRC) and their partners is incomplete. The aim of the present study was to explore illness perceptions in relation to contemporary cancer care settings among CRC survivors and partners. The present research focused on illness rather than disease, implying that personal experiences are central to the methodology. The grounded theory method used is that presented by Kathy Charmaz. The present results explore illness perceptions in the early recovery phase after being diagnosed and treated for cancer in a contemporary cancer care setting. The core category outlook on the cancer diagnosis when quickly informed, treated, and discharged illustrates the illness perceptions of survivors and partners as well as the environment in which they were found. The cancer care environment is presented in the conceptual category experiencing contemporary cancer care settings. Receiving treatment quickly and without waiting was a positive experience for both partners and survivors; however partners experienced the information as massive and as causing concern. The period after discharge was being marked by uncertainty and loneliness, and partners tended to experience non-continuity in care as more problematic than the survivor did. The results showed different illness perceptions and a mismatch between illness perceptions among survivors and partners, presented in the conceptual category outlook on the cancer diagnosis. One illness perception, here presented among partners, focused on seeing the cancer diagnosis as a permanent life-changing event. The other illness perception, here presented among survivors, concentrated on leaving the cancer diagnosis behind and moving forward. The importance of illness perceptions among survivors, and the differences in illness perceptions between survivors and partners, should be recognized by healthcare professionals to achieve the goals of person-centered contemporary cancer care.Illness is constituted by subjective experiences of symptoms and their psychosocial consequences. Illness perceptions concern peoples lay beliefs about understandings and interpretation of a disease and expectations as to disease outcome. Our knowledge about illness perceptions and coping in relation to the cancer care context among persons with colorectal cancer (CRC) and their partners is incomplete. The aim of the present study was to explore illness perceptions in relation to contemporary cancer care settings among CRC survivors and partners. The present research focused on illness rather than disease, implying that personal experiences are central to the methodology. The grounded theory method used is that presented by Kathy Charmaz. The present results explore illness perceptions in the early recovery phase after being diagnosed and treated for cancer in a contemporary cancer care setting. The core category outlook on the cancer diagnosis when quickly informed, treated, and discharged illustrates the illness perceptions of survivors and partners as well as the environment in which they were found. The cancer care environment is presented in the conceptual category experiencing contemporary cancer care settings. Receiving treatment quickly and without waiting was a positive experience for both partners and survivors; however partners experienced the information as massive and as causing concern. The period after discharge was being marked by uncertainty and loneliness, and partners tended to experience non-continuity in care as more problematic than the survivor did. The results showed different illness perceptions and a mismatch between illness perceptions among survivors and partners, presented in the conceptual category outlook on the cancer diagnosis. One illness perception, here presented among partners, focused on seeing the cancer diagnosis as a permanent life-changing event. The other illness perception, here presented among survivors, concentrated on leaving the cancer diagnosis behind and moving forward. The importance of illness perceptions among survivors, and the differences in illness perceptions between survivors and partners, should be recognized by healthcare professionals to achieve the goals of person-centered contemporary cancer care.