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  • INFLAMMATORY BOWEL DISEASE

    29Journal of Community Nursing May/June 2013, volume 27, issue 3

    Key words:Inflammatory bowel diseaseChronic illnessPatient engagementSelf management

    Inflammatory Bowel Disease (IBD) is acollective name for a number ofconditions such as Ulcerative Colitis(UC) and Crohns Disease (CD). Itproduces uncontrolled, chronicinflammation of the intestinal mucosa.IBD is characterised as a chronic illnessthat is punctuated by diseaseexacerbation and remission; patientsrequire an individual,multidisciplinary/multimodal approachto care. There is currently nopermanent cure for either CD or UC,therefore treatment strategies focus ongood symptom control, modification ofthe disease process and improvingquality of life.This article gives an overview of thecondition and presents a personalpatient experience.

    Kathryn Foskett Senior Colorectal ClinicalNurse Specialist, The Hillingdon HospitalNHS Foundation Trust, [email protected]

    Article accepted for publication: March 2013

    Inflammatory boweldisease - patientengagement andexperience

    Challenges in managementNot surprisingly, chronic disease pres-ents an overwhelming challenge to manypatients and their families, which maywell span over an individuals lifetime. Italso impacts on health care professionalsinvolved in supporting these long termpatients in both hospital and communitysettings. An individual with IBD willjourney through the health care system atdifferent points, from initial investiga-tion and diagnosis, through emergencycare/admission, surgery (planned oremergency), post operative care anddischarge, being taught to manage asso-ciated medical conditions, and finally tofollow up care with routine IBD manage-ment4. Therefore, no single model of care is

    appropriate for all patients all the time;care may be delivered in hospital, sharedbetween hospital and primary care, or besupported self-managed care. However,patients with IBD should have access toskilled and knowledgeable professionalswho know how it affects lives both phys-ically and emotionally7.

    Nursing has long been recognised ashaving a key role to play in helpingpeople manage long-term conditions8.Research has shown evidence ofimproved outcomes in patient care fromspecialist nurses who provide specialistcare and lead the co-ordination of care forindividuals affected by IBD9-11. It is wellreported that it is often nurses who aremore widely favoured by patient as theyare able to spend more time with peoplegiving more detailed information interms of the aetiology of their disease, itsmanagement and consequence of treat-ment modalities4,8. It is also felt thatnurses often take a more holisticapproach to care delivery5.At present, a great majority of IBD care

    is provided by health care professionalsbased in secondary care; however, due tothe unpredictability of the condition,aspects of management can be providedin the primary care setting, taking services

    Inflammatory Bowel Disease (IBD) is acollective name for a number of condi-tions such as Ulcerative Colitis (UC)and Crohns Disease (CD)1. Similaritiesexist between UC and CD, but they aredifferent diseases in terms of clinical pres-entation, pattern of bowel involvementand in response to therapy2. However,both conditions can produce symptomsof urgency, diarrhoea, pain, profoundfatigue, anaemia and for some patients, inparticular those with CD, associatedinflammation of the joints, skin, liver, oreyes, which can interfere with activities ofdaily living. These are known as extra-intestinal symptoms which oftencorrelate with the severity of gastroin-testinal disease. Malnutrition and weightloss are common, with patients oftenaltering their eating habits to alleviatesymptoms3. As yet, the cause of eitherdisease has not yet been identified,although both genetic factors and envi-ronmental triggers are likely to beinvolved4. The incidence of both UC andCD continues to rise and is now estimatedto affect 1 in 200 people in the UnitedKingdom with men and women equallyaffected. This incurable disease, whichoften presents in early childhood andpersists throughout life, causing inter-ruptions and limitations to education,work and family roles, has a profound lifechanging effects on the individual5.

    IBD is characterised as a chronic illnesspunctuated by disease exacerbation andremission, and requiring an individu-alised, multidisciplinary/multimodalapproach to care. There is no cure foreither CD or UC; treatment strategiesfocus on good symptom control, modifi-cation of the disease process andimproving quality of life. These includethe use of drug therapies to reduce theinflammation and suppress the bodysimmune response, appropriately timedsurgery to avoid emergency resections,nutritional support, complementary ther-apies, education, lifestyle changesincluding stress management and indi-vidualised self management strategies6.

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    closer to the patient5,7. However, manyoutside specialist nursing roles such asthe school nurse, practice nurse, andcommunity nurse, will at some pointinterface with individuals affected by UCor CD in the community setting. There-fore, they need to be prepared, and havea greater understanding of the issues thatindividuals living with IBD have to facethroughout their disease trajectory, alongwith an understanding of the impact thisillness has on those around them. Pullen& Julian1 suggest that basic support andinformation can be provided by non-specialist professionals. Educating thepatient to report infection or any adversereactions to medications promptly, util-

    patient with IBD should be aware of theimpact of such an unpredictable illness,and support the patient in order toimprove concordance. Patients with UCare five-times more likely to relapse ifthey fail to take their 5-ASA therapy14

    (medication); those who require hospi-talisation owing to relapse andsubsequent treatment of disease compli-cations cost the NHS 20 times more thanpatients in remission16. Patient informa-tion has long been seen as a keycomponent in patient self managementideologies16 and has continued to be thefoundation for many chronic diseasemanagement programmes since. Apatient perspective is outlined in Box 1.

    ising support groups and learning moreabout their disease process can be helpfulto patients and families.

    Patient choicesPatients who are well-informed abouttheir illness and how it can be treated,who have a clear understanding of theservice being offered to them and whoreceive support from the IBD team inadapting to the social and psychologicalimpact of IBD, will be able to managetheir illness more effectively and have agreater chance of achieving a betterquality of life within the constraints oftheir illness12,13. Thus, all health careprofessional involved in the care of

    30 Journal of Community Nursing May/June 2013, volume 27, issue 3

    Box 1: Living with IBD; the patient experience

    My name is Vanessa Denvir; I am 42 years old and single. Im an artist, primarily working with ceramics and glass; someof my work reflecting patient experience is on exhibition at the Manchester Royal Infirmary (MRI). I am also a volunteerwith the Colostomy Association and Crohns and Colitis UK.

    I enjoy cycling, swimming and love to travel whenever I get the opportunity. Travelling requires a little preparation:finding adequate insurance, carrying a medical certificate from my doctor or ostomy charity (available in multiplelanguages) while passing through security and customs and packing at least a third more accessories than days Ill beaway. The World Alliance programme ensures that stoma products can be forwarded worldwide to the ostomate trav-eller in emergency circumstances such as lost or stolen luggage. For longer trips abroad its always worthwhilecontacting the airline as additional luggage allowance may be offered to assist with medical needs.

    I was progressively unwell from 24 to 34 years of age through a combination of misdiagnosis and repeat investigativereferrals. Crohns Disease was confirmed in November 2004. Annually 10,000 people in the UK are diagnosed with IBDand up to 50 per cent require surgical intervention at some point. I should acknowledge my circumstances were veryunique, and as a result of a repeat abscessing fistula, rectal cancer was diagnosed in April 2005. I required major surgeryto remove my rectum, a metre of my lower bowel and to site a colostomy that functions like an ileostomy.

    From diagnosis to discharge and beyond, colorectal, stoma and ward nursing teams were empathetic and supportive. Iwas fully informed about the procedure, what to expect life to be like post-surgery, and had several visits from the stomanurse once Id returned home. Despite all of this, my initial experience of caring for and living with my situation were, tosay the least, tearful. My stoma is permanent, and like all new patients, it took time until I became accustomed to my newaltered body image and bowel function; milestones and familiarity were reached at three, six and twelve month periods.

    I reached out for additional support to the Colostomy (CA) and Ileostomy (IA) Associations where I could meet andshare with others in similar circumstances, learning that life doesnt have to stop just because I wear a bag. CA and IA areindependent charities offering support and reassurance to ostomates, their families and carers. Embracing my new life, Inow support others by volunteering at open days, on telephone help lines or visiting new ostomates in hospital. MyCrohns Disease has returned twice since surgery, but with steroid and immunosuppressant medications prescribed tomanage it, I can continue with my creative and voluntary role