foumal of Advanced Nurstng, 1991,16,1035-1041

Working capacity and quality of life after undergoing an ileostomy Ella Svantesson Martinsson RNT Lecturer tn Nurstng, Untverstty College of Health and Care

Marianne Josefsson RN ET Enterostomal Theraptst, County Hospital Ryhov, fonkoping

and Anna-Chnstma Ek RN DMSc Associate Professor, Department of Canng Saences, Umversity Hospital, Ltnkoptng, Sweden

Accepted for publication 4 March 1991

SVANTESSON MARTINSSON E, JOSEFSSON M & EK A -C (1991) Journal of

Advanced Nursmg 16,1035-1041 Working capacity and quality of life after undergoing an ileostomy The purpose of this paper is to descnbe the Me situation, the frequency of sickhstmg and the work situation of people with ulcerative cobtis and Crohn's disease who have undergone an ileostomy The survey which was undertaken in Sweden included 53 people between the ages of 17 and 65 who had had their lleostomy for between 6 months and 25 years Personal interviews were camed out and information about the operation and comphcations was acquired from the medical records Half of the respondents felt themselves handicapped to some extent Despite tbs, most of them did not consider their daily activities to be adversely afifected by the sickness/ileostomy There were, however, individual vanations depending on the sickness, how well the lleostomy worked and other factors affecting the individual's situation Twenty-two had been off sick once or several times dunng the previous 2 years, nme of them had been sick-bsted over a longer penod Most of them stated that their working capacity had not been affected by the operation/sickness, while 10 of them had some form of disabibty pension or part-tune work A positive reaction noted was that when the sickness no longer steered one's life, it became easier to plan both work and leisure time INTRODUCTION , ,, f Thereasonforhavmganileostomymaybethepresenceof one of the diromc bowel diseases, ulcerative cobhs or Crobi's disease Both diseases appear early m be, and those afflicted live with their f °« ^^^y^^f"^^^ f°^ * / greater part of their workmg bfe (Hendnksen & Binder 1980) Ulcerative cobtis ocairs m four to 10 new cases out of every 100 000 inhabitants per year mScandmavia d (Kirkegaard & Flemmmg 1988) In 75% of the cases the

disease occurs between the ages of 15 and 49, with an increased madence between 15 and 19 (Bonnevie et al ^^^^^^^ ^^ ^^^^ ^^^^^^^^^ ^^^^^^ ^ ^ ^^^^^ ^^^ ^^ ^ ^^^ ^^^ ^^ ^^^^ ^^^^^^^^^^ ^^^^^^^ ^^ ^ ^^^^^ ^^ ^ oJlammahon of the ,,eous membrane m the colon bi 90% of the cases, the ^ ^ ^ ^ ^^ ^^^^^^^^ ^ ^ ^^^ inflammation then spreads to ^J^^^^^^^^^f Crobi's disease is four to five new cases ^^^ ^

pahentswithCrohn'sdi^asebecomeillbetweenl5and29 1035

£ Svantesson Martmsson et al

years of age Tbe genetie faetor is greater than m the case of ulcerahve coHhs (HeUers 1979, Bmder 1986) With Crohn's disease, inflammatory cbanges can occur m the whole gastro-mtestmal tract, from the oral cavity to the anus Tbe mflammatory proeess engages aU the layers of the waUs of the intestmes People with pathologieal ehanges due to Crohn's disease, and who have had repeated mtestmal reseetions, ean sometimes be affeded by sbort bowel syndrome (Gobgher 1981, Andersen & Balslev 1988) Surgical intervention The surgieal mtervention mvolved m earrymg out an ileostomy ean entail a total proetoeoleetomy An altemative to a conventional ileostomy ean be a eonhnent ileum reservoir, or a pelvie reservoir for tbose with uleerahve eobhs (KeUy & Bjorck 1984, Nygaard 1987) Havmg an ileostomy entails great psychological stram Tbus emohonal preparahon is important The problems faemg a person with an ostomy ean mdude a ehange of feelmg about one's body, psyebologieal eonfmement to the altered bowel funehon, and a feebng of not bemg able to eope with tbe situahon (Bmder & Hendnksen 1987) How weU the ileostomy worics is deasive m determimng the pahent's weU-bemg, his or her abtltty to work and abtltty to view tbe future with some hope (MeLeod et al 1986) Most people with ulcerahve colitis and Crohn's disease adjust weU to their condihon, but a few expenence penods of oeeupahonal and soaal handieap (Hendnksen & Bmder 1980, Sorensen rfa/ 1987) Wtth deeper knowledge eomes mereased understandmg for those who have to bve wtth an tleostomy This ean lead to improved pre- and postoperahve care, and can ad as an mcenhve to the pahent to take steps towards self-care Thus, the aim of the study is to descnbe the bfe situahon,frequencyof siek-bstmg and the workmg bfe of the pahent with an ileostomy

METHODOLOGY Selection and drop-out rate

Measurement instrument and realization The mterview with the pahent included discussion about hfe situahon expressed as frequency of late complicahons, opportumties for soaal involvement and emotional adjustment to a bfe with an ileostomy Frequency of sick-bstmg was limited to the last 2 years and to sick-bstmg caused by the onginal sickness and/or by compbcations of tbis and/or tbe ileostomy Work situahon was expressed m terms of workmg eapaaty and abibty to funetion professionaUy Information about the operation and eomplieations was taken from the pahents' medieal reeords Permission to earry out the study was reeeivedfromthe elime and from the Committee on Researeh Ethies The patients mvolved reeetved informahon by post, desenbmg the study, its aims, its strueture and its voltmtary nature After mformed eonsent was given, appomtments for personal interviews were made over the phone A questionnaire with struetured questions was used Eaeh mterview took 30-60 rmnutes Definitions Early eompbcahons are those occumng durmg hospitalization m eormeehon with the operation Late eomplieations are those oeeurrmg from dtseharge tmtil the time of mterview and exammation of ease report (medieal reeord) Statistics The stahstieal methods used m this study are mean values, standard deviation, pereentage and ehi-square test RESULTS There was no differenee m age between the two groups with regard to the cmset of the disease, or the hme of the ileostomy (Table 1) Early complications arose m 21 ileostomy patients (57%) witb ulcerative colitis, and in eight (50%) with Crohn's disease (Figure 1) A new abdormnal operation was required because of defechve sutunng, retropentoneal haematomia, ileus, and post-operative bleedmg Patients with Crohn's disease did not have any early complicahons due to lnfeded sores The headmg 'Other' (Figure 1) mcludes such compbcations as jaundice after a blood transfusion, pneumoma, osteotomy necrosis, subileus and post-operahve bleedmg

The survey compnsed aU those under 65 who had an ileostomy and who were registered at an ostomy cbmc withm one health care distnct, in total, 55 pahents Two patients dropped out, leavmg a total of 53,37 of whom had uleerahve colihs (23 naie 14 female) and 16 of whom had Crohn's disease (nine male seven female) The average age among those with ulcoahve colihs was 45 +14-5 years Life situation among those with Crdm's disease, the average age was Thirty-one (84%) of the pahents with ulcerahve colihs and 14 (87%) erf those with Crohn's ciisease bad suffered or are 41 ±12 4 years 1036

Quahty of ltfe after an tlesotamy Table 1 Age at onset of disease, lleostomy, and number of years with stoma in people with ulcerative cohtis and Crohn's disease (in years)

Age at onset of disease Age at surgical mtervention No of years with lleostomy

100 90 80 I L 60 ; 50 • 40

i 30 20 10 0

Stan problems

Figure 1 Early comphcations among patients with ulcerative cohtis and Crohn's dtsease who have an lleostomy • = ulcerahve cohtis (n = 37), n = Crohn's disease (n = 16)

100 90 80

i ^° [60 ; 50 I 40 I 30 20 10

Ulcerahve cohtis (« = 37)

Crohn's disease

27±13 3 33 ± 13 3 12 + 72

24±103 33 ±14 9 10-1-59

are ileus, ventral hemta, hernia m the vicmity of the ostomy, bowel resection, and abdominal abscess A large number of the survey group have been affected by sores that have been difficult to heal and by fistulas m the penneum The frequency of fluid balance disorders was greater among patients with Crohn's disease than among those with ulcerahve cobhs ( P < 0 01) Among those with Crohn's disease, tbee had short bowel syndrome Fourteen pahents (two with Crohn's disease) were treated for sub-ileus The cause of the obstruction was improper diet A change of diet had been necessary in 38 (72%) of the cases due to the sickness/ileostomy This is very mdividual and can mean that a person totally avoids certain foodstuffs, or may be restnctive with some foodstuffs All 38 said that they avoided food wbch could lead to obstruction More than half of them avoided gas-formmg foodstuffs Ten patients reported an mcreased need of fluids after the operatton, and three of these needed extra salt Ntne pattents, seven of whom had Crohn's disease, had a low-fat diet ( P < 0 01) and felt a general unprovement m health Somewhat more than half (5 7%) of the respondents have used some form of medication regularly dunng the past 2 years Patients with Crohn's disease (n = 7) use anhdiarrhoeal medication to a greater extent than those with ulcerative cobhs (n = 2), (P< 0 01) Supplements of electrolytes, trace elements, iron and vitamms are also more prevalent among those with Crohn's disease Medication to reduce hypertension and diuretics were more prevalent among those with ulcerahve colitis

i Idil IJ li .ii.li, Jl, New atidominal operation

Stoma Penanal ravnlon sores/ fistula

f'"'' balance disordef

Penodlc Sub-ileus Skin sumach probleins infection

Sexual function disorder

Figure 2 Late complications of the disease/iieostomy, requinng hospital care/treatment by doctor among patients with ulcerative cohhs and Crohn's disease • = ulcerative cohhs (n = 37), n = Crohn's disease (n = 16)

suffenng from one or several late comphcahons ansmg from the disease/ileostomy (Figure 2) The same person may have had several different comphcahons, or may have undergone a new operahon on several occasions and for (Mkrent reasons Among the reasons for a new operahon

Twenty-eight pahents use a two-piece bandage and 13 use a one-piece bandage One uses a pouch only with a nng and belt Eleven of the respondents use a smaller bcindage over the ostomy or none at all after the construction of a continent lleiun reservoir, pelvic reservoir or an lleo rectal anastomosis In the matter of how well the lleostomy bandage worked, 38 (78%) stated 'very well', I I (22%) 'weir and one (2%) 'less well' FoUowmg ileostomy Quality of life after lleostomy was explored (Table 2) Some of the respondents who admitted to feebng msecure 1037

£ Svantason Marttnsson ei ai Table 2 How patients with an ileostomy expenenee their soeiai situation

Yes Do you isolate yourself beeause of your operation? Do you feel handieapped? Have you a feeling of inseeunty m the presenee of others?

Table 3 Frequeney of siekbsting dunng the last 2 years among patients with disease

Somewhat

Total

0 8 (15%)

43 (81%) 27(51%)

10 (19%) 18 (34%)

53 53

10 (19%)

43 (81%)

Uleerative eohtis

53

0

Crohn's disease

Total Oeeasional days Oeeasional weeks

Months Total

m the company of other people also answered that they isolate themselves All 10 who felt lnseeure repbed 'yes', or 'to some degree' to the question as to whether or not they felt hancbeapp>ed The queshon on how the partner/family of the respondent reaeted to the operation resulted in posihve answers, for the most part Most of them spoke of aeeeptanee, understanding, help and support Three men met v«th negahve reactions Of 53 patients, 38 are mamed and 15 are single Eleven pahents had bome children after the operahon The effeet of the operahon/siekness on the emotional life of the respondents was reported as posihve by 14 respondents (26%) This was beeause the famtly relahonshtp was stronger than before Understandmg for other people's situahons had mereased Values had ehanged and bfe had aequired a deeper dimension As far as their sex bves were eoneemed, 36 (67%) said that the operation had not had any effeet on this Seven said that there had been a posihve ehange, while 10 felt that it had had negative effeets Some ofthe respondents made the foUowmg comments The operation improved my health in general and made my sex bfe better When the ileostomy was eonverted to a eonhnent ileostomy, the feehng of sexual bberahon was further strengthened Negahve, beeause of my redueed poteney I have no sex bfe at all cbe tofistulasand sears in the genitaba 1038

No

5 (14%) 2 (5%) 7 (19%) 14

4 (25%) 2 (13%) 2 (13%) 8

9 4 9 22

On the question of whether the siekness/ileostomy affeeted ciaily achvihes, 39 (74%) stated that there was no ehange at all Fourteen patients — seven (19%) with uleerative eolitis and seven (44%) with Crohn's disease — felt that their siekness/ileostomy neeessitated restnetions, espeaaUy with regard to being able to do exaetly what one wished, bemg able to work in whatever body position one pleased, as well as bemg able to eat and dnnk what was wanted Forty-one patients (77%) stated that the ileostomy operation had had no effeet whatsoever on orgamzational and leisure aetivities, parheipation in eourses, soaal or family life Eight people had had positive expenenees and eould eope with more, while four were less able to cope Queshons touehmg upon leisure-time aetivihes and exerase habits gave similar answers but, witb regard to bobday tnps, 16 (30%) had stopped traveUmg abroad because of the nsk of gettmg gastroentenhs

Frequency of sick-Iisting Twenty-six patients (48%) repbed that they had not been off sick durmg tbe previous 2 years Five (9%) bave full disabibty/early retirement pension (Table 3) Nme out of 22 pahents have been off siek for a longer penod, eight have been off work for 1 to 2 montbs and one for 18 months Occasional sick-listmg is often due to gastroaitentis aid fluid loss The difference m firequency of sidc-lishng between the groups is not sigmficant

Quahty of ltfe after an tlesotonty Table 4 Degree of working capaaty among patients with ulcerative colitis and Crohn's ^ ^ m gi J\

*^ f^

Ulcerative colitis (n = 37)

Crohn's disease («=16)

Total

No reduced working capacity Full disabihty/early retirement pension Part-time (50%) and half early retirement pension Part-time/early retirement pension Part-time 50%, 80% Partial pension Early retirement pension for other reason

30

11

41

1

2

3

1

2 1

2 1

3 1 2 1

2

2

Total

37

f%

disease

Work situation Working capaaty has not been altered m 41 of those with ulcerative colitis and Crohn's disease (Table 4) After the lleostomy, seven have had to change their jobs In praetiee this meant changing working posture, or changing working hours, e g from shift work to day work only Heavier manual labour has been replaeed by offiee work Two people retramed after the operation beeause their profession/type of work meant that the ileostomy could have been damaged Fifty-one people (96%) had diseussed the operation with their employer and eoUeagues Most of them (85%) felt that their special situation was respected Eight of those questioned thought that there was a laek of aeeeptable sanitary facilities at their workplace, while 45 (85%) did not have tbs problem

DISCUSSION The aim of this study was to descnbe the life situahon, the frequency of sick-listing and the work situahon of pahents who have tmdergone an ileostomy Thirteen (25%) of the 53 people who replied had their ileostomy before the age of 20 Incumng a chronic lUness/ileostomy at such a young age can be emotionally difficult and can affed the future.of these mdivtduals The respondents had had thetr lleostomies for varytng lengths of hme, although none for more than 25 years EXinng t b s time, major developments had taken place m the h-eatment of chrome bowel disorders, m bowel surgery and not least m the area of ostomy aids (McLeod et al 1986, Broadwell 1987)

16

53

Compbcahons after proetoeoleetomy are desenbed as oeeurrtng frequently (Weleh et al 1980) The results of tbs study do not differ from those of earher research Dunng hospitalization, only pahents with ulcerahve colitis had suffered from infected wounds A reason for this could be reduced immunity to infection because of cortisone treahnent (FASS 1990) A factor which can affed the life situation IS the rate of late comphcahons Fistulas and wounds which have been slow to heal affected a high percentage of the survey group This had led to repjeated contacts with the hospital for each person, e g for adjustment to the fistula several times before it healed There was no difference between the groups regardmg the frequeney of penanal sores and fistulas, but those with ulcerahve cohtis suffered from more chronic sores m the pennetom, those with Crohn's dtsease suffered from fistulas to a greater extent than other pattents Owtng to the eharaeter of the dtsease, and the repeated bowel reseettons, there was a bgher mcidence of fluid balance disorders with Crohn's disease than was the ease with uleerative eohtis Fluid balanee/eleetrolyte disorders, as well as defiaenaes in traee elements emd vitcimins, ereated major problems for patients with short bowel syndrome (Bmder 1986, Andersen & Balslev 1988) Their life situation is affected because they are never confident about their state of health There are people who have to receive mtravenous fluid supplements every week/month, or at other tunes when required Others have less discomfort and manage their fluid requirements by mcreasmg their mtake of fluids and by dnnkmg speaal nutnhonal solutions The problem for most of those who have an lleostomy is that even less severe gastroententis can cause major fluid loss, wbch m more senous cases leads to a disturbance m the fluid balance, requuing acute hospital care Many people have 1039

£ Svantesson Marhnxon et ai

changed their diets to a greater or lesser extent Change of diet resulted from post-operative information, or because of eompheahons, e g attaeks of sub-ileus

Skin care The aim of good stoma eare is the prevention of stan problems, aeeordmg to BroadweU When the surgery is eompleted the skm is stiU intaet, even though pahents now have an ineision site and a stoma It is the responsibihty of the nurse to mamtam and to proteet the skin aroimd the stoma from this time until the patient has been taught appropnate steps for prevenhon of skm problems and mamtenanee of skm mtegnty (BroadweU 1987) Nowadays, people with an lleostomy reeeive more traimng and education in bandaging and stan Ccire There

are also stan-proteetion plates and sealing produets available These eontnbute to improved stoma eare and fewer stan problems A person with an ostomy must be able to rely on b s or her dramage bag when he or she retums to work and to scxaal aehvities (BroadweU 1987) In the study, aU but one rephed that their bandage worked weU or very weU Despite tbs, half of them felt handieapped, at least to some extent Some of the eomments relate, among other tbngs, to access to public toilets, which are often smaU and without a washbasin Anxiety about the smeU when they have emphed the drainage bag is a source of discomfort for many Further comments deal with an unwiUingness to take a sauna, and to bathe or shower m pubhc Several state that their general state of health improved after the colectomy, but at the cost of the hidden hanciicap wbch havmg an lleostomy entails Should there be a problem with the woricmg of the stoma, the mental weU-bemg is also affected (McLeodrffli 1986)

and five who have ulcerahve colitis do, however, receive some form of disability/early retirement pension, or work part-time/receive partial pension With regard to the respondents' hfe situahon, it has been seen that when the disease no longer steered everything, it beccime easier to plan both work and spare time There are, however, individual vanations, depending on the type of disease, the frequeney of eompheahon, the wortatig of the lleostomy and the abihty of the individual to aeeept the situation

Acknowledgements The onginal results reported in this epmmumeahon are supported by grants from the researeh fund of the County of Jonkoping, Sweden Valuable eontnbutions from the County Hospital, Ryhov, at Jonkopmg and the Umversity CoUege of Health and Care are also gratefully aeknowledged

References

Andersen J C & Balslev I (1988) Surgieal treatment of Crohn's disease LfeesltrLe^er 150(3), 147-151 Bmder V (1986) Crohn's disease Medical Year-Book (m Danish) Munksgaard, Copenhagen, pp 69-75 Binder V & Hendnksen C (1987) The soaal situation of the gastreetomized patient Nordisk Median 102,230-231 Bonnevie O , Bmder V, Anthomsen P & Riis P (1974) The prognosis of uleerahve eolitis Scandtnavtan Joumal of Gastroenterohgy 9, 81-91 BroadweU D C (1987) Penstomal skm mtegnty Nurstng Cltntcs of North Amenca 22(2), 321-332 FASS (1990) Pharmaeeutieal speeialihes m Sweden LINFO Lakemedelsinformation AB Elanders Tryeken AB Kungsbaeka, pp 770-771 (m Swedish) Goligher J C (1981) Surgery of the Anus, Rectum and Colon Bailhere TmdaU, London Hellers G (1979) Crohn's disease in Stoekholm's County 1955—1974 Acta Chtrurgtca Scandmavica Suppl 490 Hendnksen C & Bmder V (1980) Soeial prognosis lh pahents Work capacity with uleerahve eohtis Bntish Medical Joumal 30,581-583 Approximately half of the respondents had not been sick- KeUy K A & Bjorek S (1984) Surgieal advanees m the treahnent of uleerahve eohtis (m Swedish) Lakartidnmgen 81(34), hsted dunng the last 2 years There was a strong desu'e m 2911-2913 the group to be able to woric and avoid being off sick, and Kirk^aard P & Flemmmg S (1988) Surgieal treatment m uleerearlier studies show a similar result (Hendnksen & Binder ahve eohtis (m Daiush) Medicgl Year-Book Munksgaard, 1980, Sorensrai et al 1987) A stoma can mean havmg a Copenhagen, pp 139-146 handicap but, despite that, the majonty can woric (McLeod MeLeod R S, Lavery J C, Leatherman J R, Maryland P A, Fazio et al 1986, Bmder & Hendnksen 1987) In this study, too, V W, Jagelman DG etal (1986) Faetors affeetmg quahty of the majonty reported that workmg capaaty was not affechfe with eonvenhonal lleostomy World Joumal of Surgery 10, ted by the sickness/ileostcwny. Five with Crohn's disease 474-480 1040

Quahty of hfe after an tlesotomy NygaardK (1987) Preservahon of continence after proctocolec- Sorensen V Z , Olsen BG & Bmder V (1987) Life prospects tomy for ulcerahve cohhs and polyposis coli Nordtsk Medtctn and quality of hfe m patients with Crohn's disease Gut 28, 102,227-229 382-385 Raf L (1986) The sigmftcance of smoking and diet for lnflamma- Welch C E, Ottmger L W & Welch J P (1980) Manual of Lower tory bowel diseases Lakarttdntngen 83(52), 4438-4440 Gashotntesttnal Surgery Spnnger Verlag, New York

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Working capacity and quality of life after undergoing an ileostomy.

The purpose of this paper is to describe the life situation, the frequency of sick-listing and the work situation of people with ulcerative colitis an...
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