Som sjuksköterska och annan vårdpersonal är det vanligt att möta individer som lever med stomi. För att kunna ge en god vård är det viktigt att ha kunskap och förståelse för dessa individers upplevelse av att leva med stomi. Denna kunskap krävs för att kunna anpassa omvårdnaden så att deras individuella behov tillgodoses. Syftet med studien var att belysa vuxna individers upplevelse av att leva med stomi. Metoden som användes var en systematisk litteraturstudie. Systematiska sökningar och kritisk granskning av aktuell forskningen utfördes. Resultatartiklarna var baserade på nio kvalitativa vetenskapliga artiklar som resulterade i fyra kategorier: en förändrad livssituation, upplevelsen av en förändrad kropp, stomins psykiska inverkan och stödets betydelse. Individerna upplevde svårigheter att anpassa sig och stomin medförde ett minskat självförtroende. Klädvalet hade påverkats.Individerna upplevde osäkerhet kring hanteringen av stomin. Gaser och läckage från stomin väckte känslor av skam. Stöd och information upplevdes viktigt. Studiens resultat visar att upplevelsen av att leva med stomi behöver uppmärksammas. Vidare forskning krävs för att ta reda på hur sjukvårdspersonalen ska kunna ge dessa individer en så god vård som möjligt utefter deras individuella behov. / As a nurse and other healthcare professionals, it is common to meet individuals living with a stoma. In order to provide good care, it is important to have knowledge and understanding of the individual's experience of living with a stoma. This knowledge is required to adapt the care so that their individual needs are met. The purpose of this study was to elucidate adult individuals' experience of living with a stoma. The method used was a systematic literature review. Systematic searches and critical review of the current research was conducted. The results articles were based on nine qualitative research articles that resulted in four categories: changes in life, the experience of a changed body, stoma psychological impact and Support role. The individuals experienced difficulties in adapting and stoma resulted in a decrease in self-confidence. The choice of clothes had been affected. Subjects experienced uncertainty about the handling of the stoma. Gases and leakage from the stoma aroused feelings of shame. Support and information was important. The study's results show that the experience of living with ostomy needs attention. Further research is needed to find out how healthcare professionals can provide these individuals with as good care as possible according to their individual needs.

När en människa integreras med en stomi inom kroppsbilden kan sexualiteten förändras. Bakomliggande sjukdomsbild, komplikationer av operationen eller varandet med stomin kan utgöra ett hinder för utövande av människans sexualitet. Syftet med litteraturstudien har varit att beskriva vad sexualitet är för en människa med stomi. Litteraturstudien genomfördes med 10 vetenskapliga artiklar som analyserades till resultatet. Fem teman kunde urskiljas: Förlust, Oro, Ömsesidig öppenhet, Ny verklighet och Mindre annorlunda. Förekommande utmaningar för människan med stomi kan vara sexuella dysfunktioner samt intimitet. En oro kring läckage samt gas kan upplevas inom intima relationer samt att inte vara sexuellt attraktiv. Stomin kan uppfattas genant, både till utseende samt genom förlorad kroppsfunktion. Att inte se stomin som ett hinder kan människan uppleva en ny verklighet. Genom olika strategier kan människan med stomi underlätta sexuella relationer. Det påvisas brister inom informationshantering relaterat till sexualitet inför en människa ska integreras med en stomi. Aktuella omvårdnadsmodeller belyser vikten av att bedöma patientens sexualitet. En påverkad sexualitet kan uppstå hos en människa som integrerats med stomi, något som bör uppmärksammas inom omvårdnadsprocessen samt i vidare omvårdnadsforskning. / When a human is integrated with an ostomy on its body image, sexuality can change. Underlying illness, complications from surgery or the existence of the ostomy can constitute an obstacle for the human to exercise sexuality. The objective of this study was to describe what sexuality is for a human with an ostomy. The literature review was conducted by 10 scientific articles to the result. Five themes compiled: Loss, Anxiety, Mutual openness, New reality and Less different. Challenges for the human with an ostomy might be sexual dysfunctions and intimacy. One concern may be experienced around the leakages and the gas within intimate relationships also not being sexually attractive. The ostomy can be considered an embarrassment, both in appearance and by loss of body function. By not seeing the ostomy as an obstacle, the human can experience a new reality. Through various strategies, can a human with an ostomy, facilitate sexual relationships. Research highlights gaps in information related to sexuality before the surgery. Contemporary nursing models emphasize the importance of assessing the patient’s sexuality. An affected sexuality can occur amongst a human with an ostomy and something that should attend in the nursing process and in further research.

O interesse pelos estudos sobre qualidade de vida tem aumentado em todos os aspectos da sociedade moderna como intenção em avaliar e comparar cuidados médicos, assim como o impacto das intervenções na saúde. A percepção da qualidade de vida difere entre indivíduos e sua caracterização é especialmente difícil na faixa etária pediátrica, na qual cada estágio do desenvolvimento apresenta demandas específicas. Anomalias congênitas do trato urinário são muito frequentes e requerem intervenções imediatas a fim de preservar a função renal. Um dos procedimentos mais frequentemente utilizados é a confecção de estomas. Foi avaliada, num estudo descritivo e transversal, a qualidade de vida de 28 crianças e adolescentes com malformações urinárias, e seus responsáveis, usando o Autoquestionnaire Qualité de Vie Enfanti Imagé e Short-Form 36, respectivamente, e os resultados comparados com 38 crianças saudáveis com idades pareadas e seus responsáveis. Quatro questões foram acrescentadas para o grupo pacientes para avaliar casos específicos atendidos na Unidade de Nefrologia Pediátrica do Instituto da Criança do HCFMUSP. Os resultados sugerem que aspectos sociais, como brincar com irmãos (questão 3), estar na sala de aula (questão 5), durante o recreio escolar (questão 7) e dormir fora de casa (questão 17) são dificuldades encontradas por crianças e adolescentes do grupo dos pacientes, apresentando p significante nos primeiros cálculos. Diante da possibilidade da idade ser um confundidor, que pudesse estar influenciando as percepções negativas, as questões foram recalculadas, obtendo-se, no entanto, apenas a percepção negativa em sala de aula (questão 5) por parte dos pacientes analisados. Os responsáveis apresentaram p significante nos domínios que abordaram a limitação por aspectos físicos, dor e saúde mental, que, quando ajustados para idade e escolaridade, demonstraram que, na percepção dos cuidadores, a escolaridade se confirma como efeito confundidor em todos os quesitos e a idade também, à exceção do domínio limitação física. Entende-se que as malformações urológicas refletem negativamente na qualidade de vida de crianças e adolescentes, bem como em seus responsáveis. O planejamento de intervenções na saúde deve considerar o provável impacto resultante na vida dos pacientes e seus cuidadores, assim como a expectativa do paciente quanto ao resultado das mesmas. Recomenda-se que a repercussão resultante das opções terapêuticas implementadas seja periodicamente avaliada junto ao paciente e seu familiares, com o objetivo de direcionar a adoção de práticas que realmente promovam QV. / The interest in studies about quality of life is increasing in all aspects of modern society as they can be used to evaluate and compare medical care delivery as well as the impact of the health interventions. The perception of quality of life differs among individuals and its characterization is especially difficult in the pediatric age range as each developmental stage presents specific demands. Congenital anomalies of the urinary system are very frequent and may require immediate interventions to preserve the renal function. One of the most frequently needed procedures is the confection of stomas. We have evaluated in a cross sectional study the quality of life of 28 children and adolescents with urinary malformations, and their caregivers, using the Autoquestionnaire Qualité de Vie Enfanti Imagé and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients\' group questionnaire in order to evaluate specific issues related to their urological management. Our results suggested statistically significant results for social aspects, such as playing with siblings (question 3), or at classroom (question 5), or during the school recess (question 7) and sleeping out at a friends (question 17) as difficult challenges to children and adolescents of the patients group . After adjustment for age as a confounding factor only the negative perception at the classroom remained statistically significant. The patients caregivers presented worse SF-36 scores at physical aspects, pain and mental health domains. These results were also adjusted for age and education level as confounding factors. Education proved to be a confounding factor in all domains. Age was also confirmed as confounding factor for all domains with the exception of physical limitation. We suggest that the presence of urological malformations may reflect negatively upon the quality of life of children and adolescents, as well their caregivers. The planning of health interventions in this patient/caregiver group should be adjusted to the resulting impact in their family life routine, and to the patient\'s expectations of improvement. We recommend periodic evaluation of therapeutic interventions with the patient and caregivers, to assure quality of life promotion.

Trata-se de um estudo de abordagem qualitativa sob a perspectiva da sociologia da saúde, que teve como objetivo interpretar a experiência de reabilitação da pessoa com estomia intestinal por adoecimento crônico. Utilizou-se o referencial teórico da sociologia da saúde e o método etnográfico para apreender a experiência de quinze pessoas com estomia intestinal por adoecimento crônico, que foram entrevistadas no domicílio. A coleta de dados ocorreu no período de abril a novembro de 2013, por meio de entrevistas semiestruturadas gravadas em áudio, de observações participantes e das anotações em um diário de campo, cujos dados foram analisados por meio da análise de conteúdo indutiva (CEP/EERP-USP número: 220.269). Os dados foram organizados e decodificados em dois núcleos de sentidos, denominados de \"Lidando com os tratamentos e a estomia intestinal\" e \"A história da doença e os tratamentos na minha vida\". A partir destes, construímos dois núcleos temáticos: \"A experiência de reabilitação da pessoa com estomia intestinal por adoecimento crônico\" e \"Em busca da adaptação às necessidades de mudanças no cotidiano\". No primeiro núcleo temático interpretamos a reflexão dos participantes do estudo em relação à normalidade da vida anterior ao adoecimento crônico intestinal e a estomia, em busca de uma definição sobre si e a sua vida, considerando as dificuldades pessoais, familiares, sociais e terapêuticas enfrentadas, preparando-se para a condição de estomizado intestinal, que se apresenta com os desafios sociais nos espaços privados e públicos. No segundo tema apreendemos a convivência da pessoa com a estomia intestinal e as consequências do adoecimento crônico intestinal, na qual a assistência especializada e o autocuidado possibilitaram enfrentar as dificuldades, os preconceitos e o estigma, que vão sendo vividos e vencidos ao longo do tempo, com o estabelecimento de uma nova normalidade de vida como estomizado intestinal. Com a interpretação da experiência destas pessoas, o significado construído sobre a reabilitação das pessoas com estomia intestinal por condição crônica foi \"processo de superação dos desafios do cotidiano de vida, da deficiência e do estigma\". Acreditamos que este estudo poderá subsidiar a melhoria da assistência especializada a essas pessoas, nos diversos contextos de atendimento à saúde, principalmente no que se refere ao acolhimento, implementação de estratégias e de suporte profissional especializado para possibilitar a reabilitação dessas pessoas, após o tratamento cirúrgico com confecção de estomia intestinal, com atendimento da demanda de suas necessidades / This is a study of qualitative approach from the perspective of the sociology of health, which aimed to interpret the experience of rehabilitation of people with intestinal ostomy due to chronic illness. We used the theoretical framework of the sociology of health and the ethnographic method to grasp the experience of fifteen people with intestinal stoma by chronic illness who were interviewed at home. Data collection occurred in the period from April to November 2013, through semi-structured audio taped interviews, participant observations and notes in a field journal, which data were analyzed using inductive content analysis (CEP/EERP-USP number: 220.269). The data were organized and decoded in two groups of meaning, called \"Dealing with the treatments and the intestinal ostomy\" and \"History of the disease and treatments in my life.\" From these, we constructed two thematic groups: \"The experience of rehabilitation of people with intestinal ostomy due to chronic illness\" and \"In search of adapting to changing needs in daily life.\" In the first thematic nucleus we interpreted the reflection of the participants of the study compared to normal life prior to chronic intestinal disease and ostomy, in search of a definition about themselves and their life, considering personal, familiar, social and therapeutic difficulties faced, preparing for the condition of intestinal ostomy patients, presenting with social challenges in private and public spaces. The second topic we apprehended the person living with intestinal ostomy and consequences of chronic intestinal disease, in which specialized care and self-care made possible face difficulties, prejudice and stigma that are being experienced and matured over time, with the establishment of a new normalcy of life as intestinal ostomy patient. With the interpretation of the experience of these people, the meaning built on the rehabilitation of people with intestinal ostomy for chronic condition was \"process of overcoming the challenges of everyday life, disability and stigma.\" We believe that this study may support specialized assistance to these people, in different contexts of health care, especially regarding to the acceptance, implementation of strategies and specialized professional support to enable the rehabilitation of these people after surgery that created the intestinal ostomy, answering the demand of their needs

Resumo: Este estudo objetivou interpretar o significado do primeiro ano de pós- operatório para pessoas com estoma intestinal por câncer colorretal, em seguimento ambulatorial. Utilizamos o referencial teórico da Sociologia da Saúde, que integra ações das pessoas às estruturas sociais em um contexto, com utilização do método etnográfico e análise temática indutiva. Foram realizadas entrevistas em profundidade (Parecer no. 184.720 - CEP/EERP-USP) com treze participantes com estoma intestinal por câncer colorretal, no primeiro ano de pós-operatório em um hospital público universitário, em seguimento de controle oncológico. Foram construídas três unidades de sentidos e dois núcleos temáticos. As unidades de sentido \"Adoecimento oncológico: da suspeita à constatação\", \"Gerenciamento do adoecimento e do tratamento oncológico\" e \"Convivendo com o câncer, com a estomia intestinal e com o eu diferente, mostraram a decisão pelo itinerário terapêutico perpassa pelo reconhecimento do acontecimento de algo grave com o corpo destas pessoas, busca pelo sistema profissional de saúde e a luta pela acessibilidade aos exames especializados e dos tratamentos oncológicos, em busca de cura. O gerenciamento das consequências do tratamento cirúrgico como a estomização intestinal e dos tratamentos adjuvantes como a fadiga levam à reflexividade sobre as mudanças do corpo e as repercussões na vida destas pessoas, contrapondo a normalidade anterior e após o adoecimento oncológico, além do enfrentamento do estigma da doença e do estoma intestinal. Contudo, a vida destas pessoas ficou mais restrita aos acontecimentos clínicos e ao contexto de assistência à saúde, às expectativas de respostas aos tratamentos e as possibilidades de recidiva e de metástase, mas com busca de uma normalidade nesta etapa de sobrevivência. Na perspectiva da Reconfiguração do self os dois temas construídos: \"A etapa de sobrevivência da pessoa com estoma intestinal no seguimento oncológico\" e \"Estomização por CCR no primeiro ano de pós-operatório: o eu reconfigurado\", trouxeram os desafios e sofrimentos vividos por estas pessoas na busca pelo direito à acessibilidade ao exame de colonoscopia e aos tratamentos oncológicos, assim como a demanda de suas necessidades de cuidados no período do seguimento de controle e os limites do sistema profissional. O significado do primeiro ano de pós-operatório das pessoas com estoma intestinal por CCR em seguimento oncológico foi construída mediante o Referencial teórico da Reconfiguração do self na perspectiva da Sociologia Compreensiva, considerando as ações e interações destas pessoas para a mediação da experiência de perdas corporais, dos limites e de sofrimentos em decorrência deste câncer, dos resultados com o tratamento oncológico e da estomização, cuja reflexividade sobre o sentido da vida e do viver, culmina o \"eu diferente\", representado por ter câncer e estoma intestinal, em \"eu reconfigurado\", representado pelo processo de estomização por câncer colorretal, ou seja, estas mudam as suas expectativas de cura para expectativas de se manterem vivas por mais um dia / Abstract: This study aimed to interpret the meaning of the first year after surgery for people with intestinal stoma for colorectal cancer. We use the theoretical framework Sociology of health, integrating actions of those social structures in context, using the ethnographic method and inductive thematic analysis. In-depth interviews were conducted (opinion No. 184,720 - CEP/EERP-USP) with thirteen participants with intestinal stoma for colorectal cancer, in the first year after surgery in a public hospital in outpatient follow-up for cancer control. Three units of meaning and two thematic units were built. The sense units \"cancer Illness: from suspicion to finding\", \"Managing illness and cancer treatment\" and \" Living with cancer, with ostomy and with a different me,\", showed the decision by therapeutic itinerary runs through the recognition of a serious event happening with the body of these people, search for professional health system and the struggle for accessibility to specialized tests and cancer treatments, for healing. The management of the consequences of surgical treatment as the intestinal stomatization and adjuvant treatments as fatigue lead to reflexivity about body changes and the impact on the lives of these people, opposed to normal life before and after the illness, cancer beyond the coping of the stigma of the disease and intestinal stoma. However, their lives became more restricted to clinical events and the health care context, the expectations of treatment response and chances of recurrence and metastasis, but with finding a normal life in this survival stage. From the perspective of self Resetting the two themes built: \"A person\'s survival stage with intestinal stoma following cancer\" and \"stomatization by CRC in the first year after surgery: the self reconfigured\", brought the challenges and sufferings experienced by these people searching for the right to accessibility to colonoscopy and cancer treatments, as well as the demand for their care needs in control of follow-up period and limits of the professional system. The meaning of the first year after surgery for people with intestinal stoma by CRC in oncological was built by the Theoretical framework of self reconfiguration in the perspective of Comprehensive Sociology, considering the actions and interactions of these people to the mediation of the experience of bodily losses, the limits and suffering as a result of this cancer, the consequences with the cancer treatment and stomatization whose reflexivity about the meaning of life and living, culminates the \"me different,\" represented by having cancer and intestinal stoma, on \"I reconfigured\" represented by stomatization process colorectal cancer, so, they change their expectations for curing expectations remain alive for another day

O interesse pelos estudos sobre qualidade de vida tem aumentado em todos os aspectos da sociedade moderna como intenção em avaliar e comparar cuidados médicos, assim como o impacto das intervenções na saúde. A percepção da qualidade de vida difere entre indivíduos e sua caracterização é especialmente difícil na faixa etária pediátrica, na qual cada estágio do desenvolvimento apresenta demandas específicas. Anomalias congênitas do trato urinário são muito frequentes e requerem intervenções imediatas a fim de preservar a função renal. Um dos procedimentos mais frequentemente utilizados é a confecção de estomas. Foi avaliada, num estudo descritivo e transversal, a qualidade de vida de 28 crianças e adolescentes com malformações urinárias, e seus responsáveis, usando o Autoquestionnaire Qualité de Vie Enfanti Imagé e Short-Form 36, respectivamente, e os resultados comparados com 38 crianças saudáveis com idades pareadas e seus responsáveis. Quatro questões foram acrescentadas para o grupo pacientes para avaliar casos específicos atendidos na Unidade de Nefrologia Pediátrica do Instituto da Criança do HCFMUSP. Os resultados sugerem que aspectos sociais, como brincar com irmãos (questão 3), estar na sala de aula (questão 5), durante o recreio escolar (questão 7) e dormir fora de casa (questão 17) são dificuldades encontradas por crianças e adolescentes do grupo dos pacientes, apresentando p significante nos primeiros cálculos. Diante da possibilidade da idade ser um confundidor, que pudesse estar influenciando as percepções negativas, as questões foram recalculadas, obtendo-se, no entanto, apenas a percepção negativa em sala de aula (questão 5) por parte dos pacientes analisados. Os responsáveis apresentaram p significante nos domínios que abordaram a limitação por aspectos físicos, dor e saúde mental, que, quando ajustados para idade e escolaridade, demonstraram que, na percepção dos cuidadores, a escolaridade se confirma como efeito confundidor em todos os quesitos e a idade também, à exceção do domínio limitação física. Entende-se que as malformações urológicas refletem negativamente na qualidade de vida de crianças e adolescentes, bem como em seus responsáveis. O planejamento de intervenções na saúde deve considerar o provável impacto resultante na vida dos pacientes e seus cuidadores, assim como a expectativa do paciente quanto ao resultado das mesmas. Recomenda-se que a repercussão resultante das opções terapêuticas implementadas seja periodicamente avaliada junto ao paciente e seu familiares, com o objetivo de direcionar a adoção de práticas que realmente promovam QV. / The interest in studies about quality of life is increasing in all aspects of modern society as they can be used to evaluate and compare medical care delivery as well as the impact of the health interventions. The perception of quality of life differs among individuals and its characterization is especially difficult in the pediatric age range as each developmental stage presents specific demands. Congenital anomalies of the urinary system are very frequent and may require immediate interventions to preserve the renal function. One of the most frequently needed procedures is the confection of stomas. We have evaluated in a cross sectional study the quality of life of 28 children and adolescents with urinary malformations, and their caregivers, using the Autoquestionnaire Qualité de Vie Enfanti Imagé and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients\' group questionnaire in order to evaluate specific issues related to their urological management. Our results suggested statistically significant results for social aspects, such as playing with siblings (question 3), or at classroom (question 5), or during the school recess (question 7) and sleeping out at a friends (question 17) as difficult challenges to children and adolescents of the patients group . After adjustment for age as a confounding factor only the negative perception at the classroom remained statistically significant. The patients caregivers presented worse SF-36 scores at physical aspects, pain and mental health domains. These results were also adjusted for age and education level as confounding factors. Education proved to be a confounding factor in all domains. Age was also confirmed as confounding factor for all domains with the exception of physical limitation. We suggest that the presence of urological malformations may reflect negatively upon the quality of life of children and adolescents, as well their caregivers. The planning of health interventions in this patient/caregiver group should be adjusted to the resulting impact in their family life routine, and to the patient\'s expectations of improvement. We recommend periodic evaluation of therapeutic interventions with the patient and caregivers, to assure quality of life promotion.

According to the Crohn’s and Colitis Foundation of Canada, there is approximately 1 in every 200 individuals who is living with inflammatory bowel disease (IBD). Many of those living with IBD also need to have an ostomy. The literature on the effects IBD and an ostomy has on adolescents and young adults lacks consensus. Therefore, the purpose of this phenomenological study was to try to understand the lived experiences of adolescents and young adults (N=6) living with IBD and an ostomy. Sociodemographic information was collected, and the participants were interviewed in person using a semi-structured interview guide. The work of van Manen (1990) was used as a guide for data collection, analysis and interpretation of this study. Analysis revealed the essence of the adolescents’ and young adults’ lived experience as being “Concealing and Revealing the Self”. Three themes communicate the essence of their lived experience: (a) Uneasy feelings, (b) “It’s hard…”, and (c) A renewed sense of self. The needs of the adolescents and young adults, along with their recommendations to health care providers, are addressed. The study findings inform nurses in the areas of practice, education and research. Practice recommendations include being cognizant that these individuals need holistic care that addresses their psychological, psychosocial and physical needs. This study forms the basis for future research to explore some of the themes in greater detail, as well as a recommendation for a longitudinal study. / February 2008

According to the Crohn’s and Colitis Foundation of Canada, there is approximately 1 in every 200 individuals who is living with inflammatory bowel disease (IBD). Many of those living with IBD also need to have an ostomy. The literature on the effects IBD and an ostomy has on adolescents and young adults lacks consensus. Therefore, the purpose of this phenomenological study was to try to understand the lived experiences of adolescents and young adults (N=6) living with IBD and an ostomy. Sociodemographic information was collected, and the participants were interviewed in person using a semi-structured interview guide. The work of van Manen (1990) was used as a guide for data collection, analysis and interpretation of this study. Analysis revealed the essence of the adolescents’ and young adults’ lived experience as being “Concealing and Revealing the Self”. Three themes communicate the essence of their lived experience: (a) Uneasy feelings, (b) “It’s hard…”, and (c) A renewed sense of self. The needs of the adolescents and young adults, along with their recommendations to health care providers, are addressed. The study findings inform nurses in the areas of practice, education and research. Practice recommendations include being cognizant that these individuals need holistic care that addresses their psychological, psychosocial and physical needs. This study forms the basis for future research to explore some of the themes in greater detail, as well as a recommendation for a longitudinal study.

Bakgrund: Att få en stomi kan innebära flera olika förändringar i en människas liv. Individens självbild kan förändras efter operationen, till följd av det nya kroppsliga utseendet och dess funktioner. Ett tillfredsställande sexliv är starkt korrelerat till psykosocialt- och fysiskt välbefinnande. Syfte: Syftet med detta arbete var att beskriva patienters upplevelser samt eventuella förändringar som kan uppstå kring deras sexualitet efter att ha erhållit en stomi. Metod: Litteraturstudien är baserad på originalartiklar som beskriver personers upplevelser av att leva med en stomi. Resultat: Resultatet visar att både män och kvinnor uppfattar flera olika omställningar i och med den förändrade kroppsliga funktionen och det nya utseendet. Stomin medförde konsekvenser hos deltagarna som ofta påverkade identitets- och kroppsuppfattningen negativt, och deltagare hade därför svårt att acceptera sin stomi och dess utseende. Sexlivet kunde påverkas i och med att stomin medförde rädsla och osäkerhet för andra människors reaktioner, då själva stomin ansågs vara oattraktiv. Även oförändrat sexliv förekom. Slutsats: Att personal kan bemöta frågor gällande sexualitet och intimitet är viktigt efter en stomioperation, och måste anpassas efter varje enskild individs behov. Detta ändamål kräver utökade studier för personal som kommer i kontakt med patienter som erhållit stomi. / Background: An ostomy comes with several changes in a person’s daily life. One’s self image may change due to the bodily changes, both esthetical and functional. A satisfying sex life is strongly correlated to psychosocial- and physical well being. Purpose: The aim of this study was to obtain an understanding of people’s experiences and possible changes in their sexuality after an ostomy formation. Method: This literary review is based on original qualitative articles studying people’s experiences following the life-altering changes an ostomy means. Findings: The results showed that both men and women felt that getting the ostomy involved adapting to it in many ways, due to their bodily modification. Consequences of the ostomy often affected the participant’s identity- and body image negatively, which often made it hard for the participants to accept their ostomy and its appearance. The sex life was often affected, as the ostomy, considered unattractive, induced fear and insecurity with the participant as to how other people would react to it. Some participants experienced a non- changed sex life. Conclusions: It’s important that questions regarding sexuality and intimacy following an ostomy formation can be answered appropriately, and must be adapted to the specific needs of the individual. This requires further studies, enabling professionals in contact with ostomy patients to better manage such situations.

According to the Crohn’s and Colitis Foundation of Canada, there is approximately 1 in every 200 individuals who is living with inflammatory bowel disease (IBD). Many of those living with IBD also need to have an ostomy. The literature on the effects IBD and an ostomy has on adolescents and young adults lacks consensus. Therefore, the purpose of this phenomenological study was to try to understand the lived experiences of adolescents and young adults (N=6) living with IBD and an ostomy. Sociodemographic information was collected, and the participants were interviewed in person using a semi-structured interview guide. The work of van Manen (1990) was used as a guide for data collection, analysis and interpretation of this study. Analysis revealed the essence of the adolescents’ and young adults’ lived experience as being “Concealing and Revealing the Self”. Three themes communicate the essence of their lived experience: (a) Uneasy feelings, (b) “It’s hard…”, and (c) A renewed sense of self. The needs of the adolescents and young adults, along with their recommendations to health care providers, are addressed. The study findings inform nurses in the areas of practice, education and research. Practice recommendations include being cognizant that these individuals need holistic care that addresses their psychological, psychosocial and physical needs. This study forms the basis for future research to explore some of the themes in greater detail, as well as a recommendation for a longitudinal study.