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w w w . j c o l . o r g . b r

Journal

of

Coloproctology

Original

Article

The

impact

of

colostomy

on

the

patient’s

life

Karis

de

Campos

a,∗

,

Luiz

Henrique

Benites

Bot

a,b

,

Andy

Petroianu

c

,

Priscila

Argento

Rebelo

b

,

Angela

Alves

Correia

de

Souza

a

,

Ivone

Panhoca

a

aUniversidadedeMogidasCruzes,FaculdadedeMedicina,MogidasCruzes,SP,Brazil

bHospitaldasClínicasLuziadePinhoMelo,MogidasCruzes,SP,Brazil

cUniversidadeFederaldeMinasGerais,FaculdadedeMedicina,DepartamentodeCirurgia,BeloHorizonte,MG,Brazil

a

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t

i

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l

e

i

n

f

o

Articlehistory:

Received14December2016 Accepted27March2017 Availableonline10May2017

Keywords: Colostomy Qualityoflife

Digestivesystemsurgical procedures

a

b

s

t

r

a

c

t

Purpose:Toevaluatetheemotional,psychological,sexual,social,andprofessionalimpact, beforeandaftersurgery,onindividualssubmittedtoacolostomy.

Methods:Thestudywascarriedoutintwostages,withtheparticipationof15individuals. First,weevaluatedtheemotional,psychic,sexual,social,andprofessionalaspectsoftheir lives,inthepreoperativeperiodofcolostomysurgery.Afterthat,thesameaspectswere evaluatedsixmonthsafterthesurgery.Thisevaluationwasbasedontheapplicationofa questionnairewith16objectivequestions.

Results:Oftheinterviewees,53.64%decreasedtheirwillingnesstogooutanddoactivities outsidetheirhomes,withastatisticalsignificanceofp=0.001.Regardingtheenvironment, 53.85%oftheintervieweesshowedaperceptionofworseningoftheenvironment.About physicalactivity,66.65%showedadifferenceintheperformanceofphysicalactivityafter colostomy,beingstatisticallysignificant,withp=0.001.Thesportsenvironmentdidnot changein50%oftheparticipants.Patientsexualityshowedasignificantdeclinewith sta-tisticalsignificance(p=0.008).

Conclusion: Theimpactthatthecolostomygeneratedonthepatients’lives,regardingthe evaluatedaspects,wasperceptible,beingofgreatimportancethecarefulindicationofthis proceduretothepatient.

©2017PublishedbyElsevierEditoraLtda.onbehalfofSociedadeBrasileirade Coloproctologia.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense(http:// creativecommons.org/licenses/by-nc-nd/4.0/).

O

impacto

da

colostomia

na

vida

de

seus

portadores

Palavras-chave: Colostomia Qualidadedevida

Procedimentoscirúrgicosdo sistemadigestório

r

e

s

u

m

o

Objetivos:Avaliaroimpactoemocional,psíquico,sexual,socialeprofissional,prée pós colostomia,emindivíduosquepassaramporcirurgiadecolostomia.

Método:Foirealizadoemduasetapascomparticipac¸ãode15indivíduos.Naprimeirahouve avaliac¸ãosobreosaspectosemocional,psíquico,sexual,socialeprofissionaldesuasvidas, nomomentopré-operatórioàcirurgiadecolostomia.Nasegundaavaliaram-seosmesmos

Correspondingauthor.

E-mail:[email protected](K.Campos). http://dx.doi.org/10.1016/j.jcol.2017.03.004

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aspectosseismesesapósacirurgia.Estaavaliac¸ãofoiapartirdaaplicac¸ãodeum ques-tionáriocom16questõesobjetivas.

Resultados: Dosentrevistados,53,64%diminuíramavontadedesairefazeratividadesfora dolar,comsignificânciaestatísticadep=0,001.Quantoaoambienteinstalado,em53,85% dosentrevistadosapresentarampercepc¸ãodepioradoambiente.Emrelac¸ãoàatividade física,66,65%dosparticipantesapresentaramdiferenc¸anodesempenhodaatividadefísica pós-colostomia,sendoestedadoestatisticamentesignificantecomp=0,001.Oambiente esportivonãomudoupara50%dosparticipantes.Asexualidadedopacienteevidenciou grandedecaimentocomsignificânciaestatística(p=0,008).

Conclusão: Foiperceptíveloimpactoqueacolostomiagerounavidadeseusportadoresnos aspectosavaliados,sendodegrandeimportânciaaindicac¸ãocriteriosadesseprocedimento aopaciente.

©2017PublicadoporElsevierEditoraLtda.emnomedeSociedadeBrasileirade Coloproctologia.Este ´eumartigoOpenAccesssobumalicenc¸aCCBY-NC-ND(http:// creativecommons.org/licenses/by-nc-nd/4.0/).

Introduction

Colostomyisasurgicalprocedurethataimstodivertintestinal transitwhenitisanatomicallyimpossibleforfecalexcretion tooccurthroughtheanalcanal.Thesurgicaltechniqueused toperformthisprocedureconsistsintheincisionofthecolon wallanditsposteriorexteriorizationintheabdominalwall, allowingtheexcretionoffecesandgases.1

Manypathologiesaffectingthelowergastrointestinaltract canculminateinacolostomy,suchasdiverticulitis,colorectal tumors,colonandrectumtrauma,inflammatorydiseases,and congenitalanomalies.2Dependingontheetiologythatledto theneedforacolostomy,itmaybepermanentortemporary.3 Regardingthenumberofostomizedindividuals,thereare 33,864peoplewiththisconditioninBrazil,andintheStateof SãoPauloalonethereare9200individuals.4

Itisimportanttomentionthatthecolostomized individ-ualsdonotgothrough aphysicaltransformation only,but alsothroughapsychosocialone,makingthemfaceanxieties, fearsandadaptationstotheirbody’sself-image3,5–10andsuch issuesshouldbeaddressedbyhealthprofessionals,including thephysician.

Inasystematicreviewoftheliterature,11theanalyzed arti-clesmentioned alterationsrelatedtothe colostomy:sexual problems,depression,constipation,intestinalgases, dissat-isfaction withone’s physicalappearance, difficulties when traveling,changesinthewardrobe,fatigue,andconcernwith ostomysounds.Thus,thereisadeclineinsocial participa-tion,sinceindividualsoftenisolatethemselvesfromothers, inadditiontooftenfeelingthatpeoplewhousedtobeclose tothemhavebecomedistant.12Changesinthesexuallifeof thecolostomizedindividualareduetolossoflibido,change inone’sbodyself-imageandfearofleakageoffecesorgases duringsexualintercourse.6

Consideringalltheabove,thisstudyisnecessary,sincethe physicianwhowillassisttheseindividualsmustbeawareof thechangesthataffectthemcausedbythecolostomy.13

Therefore,theaimofthisstudywastoevaluatethe emo-tional,psychological,sexual,socialandprofessionalimpactof thecolostomyonindividualssubmittedtothistypeof inter-vention,comparingtheseaspectsbeforeandafterthesurgery.

Method

ThepresentstudywassubmittedtotheEthicsandResearch CommitteeofUniversidade deMogidas Cruzes(UMC),and approvedundernumber 696,332and totheResearchEthics CommitteeofHospitaldasClínicasLuzia dePinhoMelo,of whichapprovalisunderN.003/14.Allthestudyparticipants signedtheFreeandInformedConsentform.

Fifteenindividualssubmittedtoacolostomysurgerywere invitedtoparticipateinthestudyfromAugust2014to Novem-ber2014.Asthereweretwodeathsattheendofthestudy,the numberofparticipantscomprised13individuals.Thenumber ofsubjectswasdefinedbasedonthenumberofindividuals whounderwentthisprocedureandmettheinclusioncriteria usedinthisstudy,mentionedlater.Allsubjectsansweredthe questionnaireinthehospital,whiletheywerehospitalized,at thepreoperativeorpostoperativeperiodofthecolostomy.

All individuals aged 20 years or older with cognitive integrity and who agreed to voluntarily participate in the study,aftersigningtheFreeandInformedConsentform,were includedinthisstudy.

Individuals who had significant impairments, such as cognitivefunctionimpairment,severeorprofound auditory impairmentwithoutintervention,orthosewhohad compre-hensiondifficultieswerenotchosentoparticipateinthestudy, aswellasthosewhocouldnotsigntheirnamesandwhodid nothaveaguardiantodosoontheirbehalf.

The study was divided into two stages. The first one consistedintheassessmentofsomegeneralaspectsofthe individuals’life,inthepreoperativeperiodofthecolostomy surgery.Inthesecondpart,thesameaspectswereassessed, but sixmonthsafterthesurgery,aimingtoassess whether thereweredifferencesbetweenthepreoperativeand postop-erativeresponses.

Theevaluationwas carriedout throughaquestionnaire thatincludedquestions regardingthegeneralidentification oftheindividual,includingacademic,professionalquestions, aswellasquestionsonthetimeofsurgery.

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withscoresrangingfrom 1to5foreachquestion,withthe patientbeinginstructedtoansweraccordingtothedegreeof intensityforeachassesseditem(verybad,bad,regular,good andexcellent),sothattherelevantstatisticalanalysiscould beperformed.

Itisnoteworthythatthisquestionnairewascreatedbased ontwoqualityoflife,14,15adaptingthemtotheobjectivesof thepresentstudy.

Thesamequestionnairewasappliedtothesame individ-ualsassessedinthefirstpartofthestudysixmonthsafterthe colostomysurgery,thatis,fromFebruary2015toMay2015at theplaceoftheirchoice.Therefore,someansweredthe ques-tionnaireathome,othersinthehospitalwhilewaitingforan appointmentand othersbytelephone.Inthepostoperative period,twoquestionswereaskedattheendofthe question-naire,whicharespecificforthispublic,asfollows:whetherthe studysubjectparticipatedornotinagroupofcolostomized individuals,which could befoundin twoaddresses inthe municipalityofMogidasCruzes;andwhetherthis participa-tionhadhelpedhimorherovercomethedifficultiesresulting fromthesurgery.

Statisticalanalysis

Theresultswere analyzedthroughthe descriptiveanalysis ofeach question,inaddition tothe parametric Student’st testtocomparethepre-andpostoperativequestionnairesof theassessedindividuals.Thelevelofsignificancewassetat p≤0.05.

Results

Data on 15 patients were initially collected in the first questionnaireto evaluate the pre-colostomy life and after 6 months, they were assessed again regarding the post-colostomyevaluation.Thereweretwodeathsand,therefore, atotalof13participantsattheendofthecollection.

Thedataofthestudyparticipantswerecollected, show-ingamean age of66.3 years,65%ofthe sampleconsisted ofmales,and35%,females.Asfortheparticipants’levelof schooling,38.46%ofthemhadnotfinishedElementarySchool, 30.76%hadfinishedElementarySchool,15.38%hadfinished HighSchooland7.70%wereilliterate;75%ofthemwere mar-riedand40%wereretired.

Regardingtheworkactivity,76.92%ofthesampleworked atthetimeofthefirstinterviewandonly30%continuedto workafterthecolostomysurgery.Thus,consideringonlythose who returned totheir professional activities (evaluation of howmuchthe individual wasableto performwork activi-tiesatthepre-colostomyandpost-colostomyperiods),33.33% oftheparticipantshada4-pointdecrease,whencomparing bothquestionnaires;33.33%decreased2pointsand33.33% decreasedonly1point.Thismeansthataconsiderable num-berofthemhadalargedeclineintheirprofessionalactivity performance.However,thisresultwasnotstatistically signif-icant(p=0.64).

Regarding the work environment before and after the colostomy,thatis,thetypeofrelationshipwithco-workers, considering onlythose who returned to work (30% of the

0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00%

Family environment Social activity at home

Did not change Decreased 1 point Decreased 2 points

Decreased 3 points Increased 1 point

76.92%

15.38%

7.70%

53.84%

23.07%

7.70% 7.70%

7.70%

Fig.1–Pre-andpost-colostomycomparisonregardingthe familyaspectofthecolostomizedpatient.

sample working in the first interview),it was shown that 33.33% decreased 3 points when comparing the pre- and post-colostomyquestionnaires,thatis,theprofessional envi-ronmentworsenedafterthecolostomy.Ontheotherhand, 33.33%decreasedonlyonepoint,beinginitially5pointsin thepre-colostomyperiodanddecreasingto4pointsafterthe surgery,whereastheremaining33.33%didnotnoticeany dif-ferenceregardingthepre-andpost-colostomyenvironment, withoutanydecreaseinthescore.

Regardingtheindividual’swillingnesstodosocial activi-tiesoutsidethehome,suchasgoingtofriendsorrelatives’ housesandgoingtorestaurants,cinemasorreligioustemples, forinstance,itwasobservedthat38.46%oftheparticipants maintainedthesamewillingnesstodoactivitiesoutsidethe homeevenafterthecolostomy,23.07%had adecrease of1 pointinthedesiretoleavethehouseandthesamepercentage showedadecreaseof3pointsinthewillingnesstodo exter-nalactivities.Itwasalsoobservedthat7.70%hada2-point decreaseandthesamepercentageshoweda4-pointdecrease inthewillingnesstoleavehometodootheractivities.These datashowedstatisticalsignificance,withp=0.001.

Regarding the socialenvironment existing between the patient and people present atthe site(outside the home), 46.15% saidtherewere no changesinthe scoresregarding howthisenvironmentwasinpre-andpost-colostomyperiods; 15.38%showedadecreaseof2points,thesamepercentage showedadecreaseof1point,and15.38%ofthemhada one-pointincreaseafterthecolostomy.Therewasalsoadecrease of 1point between the pre- and post-colostomy question-nairesin7.70%oftheinterviewees.Therewasnostatistical significanceforthisquestion,withavalueofp=0.051.

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Sexual life

Did not change

Lost 1 point

Lost 2 points

Lost 3 points

41.66% 25%

25%

8.33%

Fig.2–Changesinthesexuallifeoftheparticipantsbefore andafterthecolostomy;pvalue=0.008.

Asfortheenvironmentwithphysicalactivityandsports before and after the colostomy, only 6of the participants wereabletorespond.Regardingphysicalactivity,abouthow muchthestudysubjectwasabletodooftheproposed exer-cises,33.33%hada4-pointdecreasewhencomparingthe pre-andthepost-colostomyquestionnaires.For16.66%of respon-dents, there was a3-point decrease in performancewhen comparing thepre- and post-questionnairesand the same percentageofsubjectshada5-pointdecreaseforthis compar-ison.Therewasnochangeinperformancebeforeandafter thecolostomyfor16.66%oftheanalyzedcases.Stillrelated totheperformanceofphysicalactivities,therewasone indi-vidualwhodidnotperformanyactivitybeforethecolostomy andwhostarteddoingthemafterthesurgeryandthescore givenbythatindividualwas4points,thatis,therewasagain of4pointsbetweenthepre-andpost-colostomyperiods.This questionshowedstatisticalsignificance,withapvalue=0.001. Asforthesportsenvironmentbetweenthestudy partici-pantandtheothersportscolleagues,50%saidtherewereno changesinthequalityofthepre-andpost-colostomy envi-ronment;16,66%saidtherewasa4-pointdecreaseafterthe colostomy;and16.66%saidtherewasadecreaseof5points, sincetheparticipantperformedphysicalactivitiesbeforethe surgery,butstoppedafterthecolostomy.Therewasalsoagain of4pointsinthecomparisonofthepre-andpost-colostomy periodsforonesubject(16.66%).Thisquestionshowed statis-ticalsignificance,withp=0.04.

Regarding how the participants assessed their overall health,beforeandafterthecolostomysurgery:7.70%hada 4-pointdecreasewhencomparingoverallhealthbeforeand afterthecolostomy;23.07%hada2-pointdecreasebetween thepre-andpost-colostomyperiodsandthesamepercentage hada1-pointdecreaseinthesamecomparison.For23.07%of theinterviewees,therewasnochangeintheoverall health status.For15.38%,therewasagainof1point,referringtoan improvementintheoverallhealthstatusafterthecolostomy whencomparedtothepre-colostomyperiod.For7.70%,there wasagainof2pointswhencomparing thequestionnaires relatedtothisquestion.Thisquestionshowedstatistical sig-nificance,withapvalue=0.04.

Regardingthechangesintheparticipants’sexuallife,Fig.2 showstheresults.

Asforthe lasttwoquestions askedinthe secondstage ofthis research,that is,ifthe participantparticipatedina colostomysupportgroup,100%ofthemreportednever attend-ingaspecializedgroup.Whenaskedaboutthereasontheydid notseektoparticipateinthesegroups,thereasonsgivenwere relatedtobeinghospitalizedwithnopredictionofdischarge, lackofknowledgethatexisted,greatdistancebetweenthe grouplocationandthepatient’shome,beingwelladaptedto thecolostomy,andextraexpensesrelatedtotransportation fromhometowherethegroupwaslocated.

Discussion

With the need for a surgical intervention to receive a colostomypouch,patientsmustgothroughchangesregarding severalaspectsoftheirlives,16inordertoadapttotheirnew conditionandhavethebestpossiblequalityoflife.

Thisstudy,whichcomprised13individualswho,for dif-ferentreasons,weresubmittedtoacolostomy,showedthere wereseveralchangesintheirdailylives,whencomparinglife beforeandafterthecolostomy.Suchchanges,ingeneral,are demonstratedbytheliterature,whichmentionsthatduring adiseaseprocess,thereisahighemotionalloadandthatit eventuallyinterfereswiththeindividual’slifeprocess.17

As for the specificitiesof each aspect evaluated in this study,regardingthesocialscope,therewasachangein per-formance,whichwasreducedinallcases,albeitatdifferent levels,inthefunctionsperformedbeforethecolostomy.The workingenvironmentdidnotchangefor33.33%ofthesample. Althoughnotstatisticallysignificant,suchdatadisclosesthe difficultiesexperiencedbytheseindividualsregardingtheir occupationalactivityandtheirsocialrole.Thisfindingisin linewithwhatisdemonstratedintheliterature,thatis,the adaptationprocessisinfluencedbytheacceptanceofthese individuals inface oftheirnew conditionand the existing socialstigma.18Moreover,theperceptionthattheindividuals withcolostomy themselves haveofthe decrease orlossof theirproductivecapacityalsoinfluencesthisprocess.5

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However,theliteraturealsoshowsthatmanyindividuals restarttheirlivesandmaintaintheirinterpersonal relation-ships,whichisinlinewithwhatwasshowninthepresent study, with 46.15% of respondents showing no difference regardingthestimulustoleavehomeandmeetotherpeople, or the established environment, i.e., the same in the pre-colostomysituation.5

Regardingthesocialactivityathomeandthefamily envi-ronment,therewasnochangefor76.92%and53.84%ofthe participants,respectively. Accordingtothe reportsofsome participants,“thefamilyisthesafehaven”andifitwerenotfor thefamily,theywouldnotknowhowtogothroughtheprocess ofthediseaseandthecolostomy.Thisaspectishighlighted intheliteraturerelatedtothearea,whichreportshowmuch thesupportofthefamilyandsignificantpeopleisimportant forthe rehabilitationand reintegrationofthecolostomized individual.5

Asforthephysicalactivityand theestablished environ-ment,regardingthefirstaspectanalyzedtherewasatotalof 66.65%ofparticipantswhoshowedadifferenceinphysical activityperformancebeforeand afterthecolostomy,witha decreaseof3–5pointsinthisperformance,whichwas statis-ticallysignificantwithp=0.001(consideringthatsixsubjects wereinvolvedinthesequestionsrelatedtophysicalactivity). Thesportsenvironmentdidnotchangefor50%ofthe partic-ipants,whofeltaswelcomeastheydidbefore,whereasthe otherhalfshowedvaryingdegreesofdeteriorationregarding howtheyfeltwelcomedandateaseinthatenvironment.The literatureshowedsimilardata,wherecolostomizedpatients do not usually return or only return partially to “active” leisureactivitiessuchassports,duetotheconcernsaboutthe colostomypouch,fearofneedingtocleanthepouchduring thephysicalactivityandphysicaland/orhealthproblems.5,6

As for the overall health quality, 54.84% of the partici-pantsshowedadecrease,tosomedegree,afterthecolostomy, whereas23.07%hadnopre-andpost-colostomychangesand 23.08%hadagainintheoverallpost-colostomyhealth.This self-perceptionaboutoverallhealthinourstudyisincontrast withthe literature,whichmentionsthattheindividualcan associatetheuseofthecolostomypouchtodiseaseresolution, whichleadstogreaterpositivityregardingrecoveryand adap-tationtothecondition,aswellascontributingtothereduction oftheirsuffering.19

Thereweregreatchangesregardingthepatient’s sexual-ityaspect,withastatisticallysignificantdecrease(p=0.008) inthisfunction.Although41.66%oftheparticipantsdidnot report any changes between the pre- and post-colostomy questionnaires,50%ofthesampleshowedadecreaseof2or3 pointsinthepost-testwhencomparedtothepre-test, show-ingthatthesexuallifedeterioratedafterthecolostomy.These dataarecorroboratedbytheliterature,whichshowsthatthe colostomizedindividualmayfeelashamedinthepresenceof his/herpartner,embarrassmentwiththenewbodyimageand insecurityregarding the colostomy pouch.5,20–23 Some par-ticipants mentionedthat they were embarrassedregarding their partners,whereas others said the partnerwas afraid ofcomplicationsduringthesexualactthatwouldembarrass the patient, suchas colostomy pouch leakage. Others also reportedthe partner’sfear ofhurting thecolostomy pouch site.

Itwasobservedthatnoneofthepresentstudyparticipants hadsoughtanyOstomySupportGroups(OSG),andseveral rea-sonsweregiven,withthemostoftenmentionedonebeingthe lackofknowledgeabouttheexistenceofthesegroups.During theinterview,itwasobservedthatsomedifficultiespresented bythe participantscouldbeattenuatedwiththe participa-tion oftheseindividualsintheOSGs,requiring aperiodof guidanceprovidedbyappropriateprofessionals,wheneverthe individualneeds,toelucidatethefamilyandthecolostomized patient about the changes that will occur,attenuating the difficultiesrelatedtoself-imageandsocial,leisureandwork activities.24

Conclusions

Consideringtheabovementionedfacts,thecomplexityofthe changesthatoccurredinthelifeofthecolostomized individ-ualhasbeendemonstrated.

Oftheaspectsthatwere evaluated,therewasa statisti-callysignificantdecreaseinthewillingnesstoperformsocial activitiesoutsidethehome,physicalactivities,aswellasan importantdeclineinthesexualarea.Suchchanges demon-stratethe importanceofaholistic approach,and acareful indicationofthisproceduretothepatientbythephysician.

Funding

CNPq/PIBIC.

Conflicts

of

interest

Theauthorsdeclarenoconflictsofinterest.

Acknowledgements

ToConselhoNacionalde DesenvolvimentoCientíficoe Tec-nológico(CNPq),whichprovidedfundingsupportthrougha PIBICscientificinitiationgrant.

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Imagem

Fig. 1 – Pre- and post-colostomy comparison regarding the family aspect of the colostomized patient.
Fig. 2 – Changes in the sexual life of the participants before and after the colostomy; p value = 0.008.

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