IBD: From diagnosis and treatment to long-term disease management

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Reference: November-December 2026 | Issue 6 | Vol 19 | Page 54

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Inflammatory bowel disease (IBD) is a chronic, relapsing and remitting disorder of the gastrointestinal tract, with Crohn’s disease (CD) and ulcerative colitis (UC) representing the two principal forms. Although both conditions are characterised by dysregulated and sustained intestinal inflammation, they differ considerably in their anatomical distribution, pathological characteristics, clinical presentation, and potential complications. IBD can occur at any age, but is frequently diagnosed during adolescence and early adulthood, often at a stage of life when education, employment, relationships, fertility, and social development are particularly important.

The management of IBD has changed considerably over recent decades. Treatment has moved from an emphasis on controlling symptoms towards a more proactive approach aimed at controlling intestinal inflammation, achieving sustained remission, preventing structural bowel damage, and reducing the risk of hospitalisation and surgery.

This shift has been accompanied by major advances in pharmacological treatment, including the increasing use of biologic therapies and targeted small molecules. Current European guidance emphasises individualised treatment, objective assessment of disease activity, and close monitoring of treatment response.^{1,2, 3} The 2024 European Crohn’s and Colitis Organisation (ECCO) guideline provides updated recommendations for the medical treatment of CD, while the 2026 ECCO guideline provides an updated evidence base for medical treatment of UC.^1,2

CD and UC

CD can involve any part of the gastrointestinal tract, from the mouth to the anus, with the terminal ileum and colon among the most frequently affected sites. The inflammatory process is typically transmural and discontinuous, with affected segments of bowel separated by areas of relatively normal-appearing tissue. This characteristic distribution contributes to the complications associated with CD, including strictures, fistulae, abscesses, and penetrating disease.^1,4

UC is confined to the colon and characteristically involves the rectum, extending proximally in a continuous pattern. Inflammation principally affects the mucosa and may extend into the submucosa in more severe disease. The extent of UC is commonly described according to whether the disease is limited to the rectum, extends through the left side of the colon, or involves more extensive areas of the colon.^2,5

The distinction between the two diseases is clinically important, although symptoms frequently overlap. UC commonly presents with bloody diarrhoea, increased stool frequency, urgency, and tenesmus, whereas CD may present with abdominal pain, diarrhoea, weight loss, fatigue, nutritional deficiencies, or symptoms associated with stricturing or penetrating disease. Some patients, however, present with relatively non-specific symptoms, and the diagnosis cannot be established from symptoms alone.^4,5

The precise cause of IBD remains incompletely understood. It is considered to result from an interaction between genetic susceptibility, environmental influences, intestinal microbiota, and dysregulation of the immune response. IBD should not be regarded as a condition caused simply by stress or diet. Nevertheless, environmental factors, smoking, nutrition, psychological wellbeing, and lifestyle can influence disease experience and management.^1,2

Recognising possible IBD

Early recognition of IBD is important because persistent untreated intestinal inflammation can result in cumulative bowel damage and disability. Contemporary management places considerable emphasis on early diagnosis and appropriate assessment.¹ Nurses are well placed to recognise patterns of symptoms that warrant further clinical assessment and investigation. Persistent or recurrent diarrhoea, rectal bleeding, abdominal pain, nocturnal bowel symptoms, urgency, tenesmus, unexplained weight loss, and persistent fatigue should prompt consideration of an underlying inflammatory gastrointestinal disorder. Anaemia, particularly iron-deficiency anaemia without an obvious explanation, may provide an additional clue.^1,2

A detailed clinical history should identify the duration and progression of symptoms, stool frequency, stool consistency, the presence and quantity of blood, urgency, nocturnal symptoms, and abdominal pain. The nurse should establish whether the patient has experienced weight loss, anorexia, or reduced dietary intake and whether symptoms are affecting attendance at work, college, or social activities.⁴

Medication history is particularly relevant. Non-steroidal anti-inflammatory drugs (NSAIDs) may exacerbate gastrointestinal symptoms in some patients, while recent antibiotics raise the possibility of infectious diarrhoea, including Clostridioides difficile. A history of recent travel, gastrointestinal infection, family history of IBD, and previous episodes of unexplained gastrointestinal symptoms should also be explored.^4,5

In a patient with established IBD, a change in symptoms should not automatically be attributed to an inflammatory flare. Infection, medication adverse effects, irritable bowel syndrome, bile acid diarrhoea, small intestinal bacterial overgrowth, and other gastrointestinal conditions can produce symptoms resembling active IBD. Objective assessment is therefore essential before treatment is escalated.^1,2

Diagnosis and investigation

There is no single diagnostic blood test for IBD. Diagnosis requires integration of clinical history, laboratory investigations, stool assessment, endoscopy, histology, and, where appropriate, cross-sectional imaging.⁶

Initial blood investigations commonly include a full blood count, inflammatory markers, renal function, electrolytes, liver function, albumin, and iron studies. Vitamin B12 and folate may be particularly relevant in patients with CD involving the terminal ileum or those with nutritional compromise.

Vitamin D status may also warrant assessment, depending on the individual clinical situation.⁶ C-reactive protein (CRP) can provide useful information regarding systemic inflammation, although it is not sufficiently sensitive or specific to be used alone to diagnose or exclude active IBD. Some patients with significant intestinal inflammation may have a relatively normal CRP, while other inflammatory or infectious conditions can result in an elevated result.⁶

Faecal calprotectin has become an important non-invasive investigation. It is a marker of intestinal inflammation and can assist in distinguishing IBD from functional disorders such as irritable bowel syndrome.⁶ An elevated result, however, is not specific for IBD and may occur with gastrointestinal infection, colorectal neoplasia, NSAID use, and other inflammatory conditions. Interpretation must therefore take place within the clinical context.

Endoscopic assessment remains central to diagnosis. Colonoscopy with assessment of the terminal ileum and appropriate biopsies can demonstrate the distribution and severity of inflammation and provides tissue for histological examination. Histology is important in establishing chronicity and supporting the distinction between IBD and other causes of colitis.⁶

Imaging has particular importance in CD because inflammation may involve areas of small bowel that cannot be adequately assessed by conventional colonoscopy. Magnetic resonance enterography and intestinal ultrasound are increasingly important in assessing bowel inflammation, strictures, fistulae, and other complications. Contemporary diagnostic guidance increasingly recognises the value of non-invasive biomarkers and intestinal ultrasound in monitoring disease activity and reducing unnecessary invasive investigations.⁷

From symptom control to treat-to-target management

One of the most important developments in modern IBD care has been the recognition that symptoms alone do not provide a sufficient measure of disease control. A patient may feel relatively well despite ongoing objective intestinal inflammation, while another may experience significant gastrointestinal symptoms despite little evidence of active disease.⁸

The STRIDE-II treat-to-target framework established a structured approach to defining treatment goals in IBD.^3,8 Short-term objectives include improvement in symptoms and restoration of normal functioning, while intermediate and long-term goals include normalisation of inflammatory biomarkers and endoscopic healing. The overall objective is not simply for the patient to feel better temporarily, but to achieve sustained control of the inflammatory process and reduce the risk of future bowel damage.^3,8

This approach has important implications for nursing assessment. A patient’s current symptoms should be compared with their usual baseline, and the nurse should establish whether there has been a clinically meaningful change. Stool frequency, rectal bleeding, urgency, abdominal pain, nocturnal symptoms, weight, fatigue, and functional capacity should all be considered alongside objective investigations.^6,8

The concept of remission should be explained carefully to patients. Symptomatic improvement is important, but it does not necessarily mean that intestinal inflammation has completely resolved. Explaining this distinction can improve understanding of why patients may need ongoing medication and monitoring even when they feel well.^6,8

Pharmacological management

Treatment is individualised according to disease type, anatomical location, disease activity, previous treatment response, prognostic factors, complications, and patient preferences. The therapeutic approach also differs between CD and UC.^1,2

In mild-moderate UC, 5-aminosalicylates (ASA), particularly mesalazine, remain an important treatment option. Oral and rectal preparations may be used according to disease distribution, and combination therapy may be appropriate where disease extends beyond the rectum.² The 2026 ECCO guideline continues to support the use of 5-ASA in appropriate patients with mildly-moderately active UC.² In contrast, the role of 5-ASA in CD is very limited. The 2024 ECCO guideline recommends against the use of 5-ASA for induction or maintenance of remission in CD because of insufficient evidence of meaningful efficacy.¹

Corticosteroids remain valuable for inducing remission in selected patients with active disease, particularly where rapid control of inflammation is required. Their use should, however, be limited because of their substantial short- and long-term adverse effect profile. Prolonged corticosteroid exposure is associated with osteoporosis, infection, hyperglycaemia, hypertension, weight gain, mood disturbance, cataracts, and adrenal suppression.

Steroids should therefore generally be regarded as an induction or bridging treatment rather than a long-term maintenance strategy.^1,2 Repeated courses of corticosteroids should prompt consideration of whether the patient’s treatment strategy requires review. A patient who repeatedly relapses when corticosteroids are reduced may require steroid-sparing therapy rather than repeated courses of the same treatment.^1,2

Immunomodulators such as azathioprine and mercaptopurine continue to have a role in selected patients, although their use has changed as biologic and targeted therapies have become increasingly available. Treatment requires appropriate laboratory monitoring and patient education concerning infection, adverse effects, and the importance of reporting concerning symptoms.^1,2

Biologic therapies have transformed the management of moderate to severe IBD. Anti-tumour necrosis factor therapies, anti-integrin agents, and interleukin-targeted therapies may be used according to the individual clinical circumstances. Targeted small molecules, including Janus kinase inhibitors and other advanced therapies, have further expanded the treatment options available to patients with moderate to severe disease.^1,2

The choice of therapy is no longer simply a decision about which medication is most effective. It may involve consideration of previous treatment exposure; comorbidities; safety, route, and frequency of administration; patient preference; pregnancy considerations; lifestyle; adherence; and the individual’s risk of disease progression.^1,2

The nursing role in biologic and advanced therapy

As biologic and targeted therapies have become increasingly central to IBD management, the nursing role has evolved accordingly. Nurses contribute to the comprehensive assessment undertaken before therapy, reviewing current medications, vaccination status, infection risk, and relevant baseline investigations to identify potential safety issues and support safe initiation of treatment.^1,2,9

During treatment, nurses play a key role in the safe delivery and ongoing monitoring of therapy, administering intravenous or subcutaneous treatments, monitoring for infusion or injection reactions, reviewing laboratory results, assessing for signs of infection, and reinforcing adherence and treatment education.^1,2

Patients receiving immunomodulating therapies require clear advice regarding infection risk. Fever, persistent cough, unexplained weight loss, recurrent infections, or other concerning symptoms should be reported and assessed appropriately. Nurses should also reinforce the importance of communicating with the IBD team before starting new medications, particularly where immunosuppression may affect infection risk or treatment safety.⁹

The nurse’s role ensures that patients understand their treatment and can use it safely and effectively. Education should address the purpose of treatment, the expected benefits and timeframe for response, potential adverse effects, and when these should be reported. Nurses should also emphasise the importance of continuing treatment as prescribed, even when symptoms improve, as symptomatic improvement does not necessarily reflect resolution of underlying inflammation.^1,2

Infection prevention and vaccination

Infection prevention is an important component of IBD management, particularly for patients receiving immunosuppressive or advanced therapies. The updated ECCO guidance on infections in IBD provides recommendations concerning infection prevention, screening, and vaccination.⁹ Vaccination status should be reviewed proactively rather than waiting until immunosuppressive treatment is commenced. Where possible, vaccination assessment should take place before significant immunosuppression begins, because some live vaccines may be contraindicated during immunosuppressive therapy.⁹

For nurses, this provides an opportunity to integrate preventive healthcare into IBD management. Influenza, Covid-19, pneumococcal, hepatitis B, and other vaccinations should be considered according to the individual’s age, risk factors, treatment, and national recommendations.⁹ The precise vaccination programme should be determined in accordance with current Irish immunisation guidance and the patient’s clinical circumstances.

Nutritional assessment and anaemia

Nutritional problems are common in IBD and may arise from reduced oral intake, intestinal inflammation, malabsorption, increased nutritional requirements, or self-imposed dietary restriction.^1,2,10 Iron-deficiency anaemia is particularly important. It may contribute substantially to fatigue, reduced concentration, and impaired quality of life. Iron deficiency may occur in the presence or absence of anaemia, and inflammatory activity can complicate interpretation of ferritin.

Assessment therefore requires consideration of the full clinical picture and relevant laboratory parameters.^1,2 Vitamin B12 deficiency is particularly relevant in CD involving the terminal ileum and following ileal resection. Folate, vitamin D, and other micronutrients may also require assessment according to the individual’s disease and nutritional status.^1,10

Patients frequently modify their diet in an attempt to control symptoms. Some may unnecessarily exclude dairy products, fibre, gluten, or multiple other foods, resulting in an increasingly restrictive diet. Nurses should explore dietary beliefs without judgement and recognise when specialist dietetic assessment is appropriate.¹⁰ Contemporary ECCO guidance supports personalised dietary management rather than a universal diet for all patients with IBD.¹⁰

Extraintestinal manifestations

Extraintestinal manifestations of IBD can involve the joints, skin, eyes, liver, and biliary system.¹¹ Musculoskeletal manifestations include peripheral arthritis and axial spondyloarthritis. Patients may describe persistent inflammatory back pain, morning stiffness, or painful swollen joints. Dermatological manifestations include erythema nodosum and pyoderma gangrenosum, while ocular manifestations include episcleritis and uveitis.¹¹ The distinction between these conditions and unrelated symptoms is clinically important. Acute painful red eye, photophobia, or visual disturbance, for example, warrants urgent ophthalmological assessment because uveitis can threaten vision.¹¹

Primary sclerosing cholangitis is an important hepatobiliary association with IBD and is particularly associated with UC. Abnormal liver function tests should therefore not automatically be attributed to medication or alcohol without appropriate clinical consideration.¹¹ Venous thromboembolism is another important consideration, particularly during active disease and hospitalisation. The inflammatory state associated with IBD can increase thrombotic risk, reinforcing the importance of appropriate assessment and prophylaxis in patients who require hospital admission.¹¹

Acute severe UC

Acute severe UC represents a potentially life-threatening complication and requires urgent, hospital-based management. Patients may present with frequent bloody diarrhoea, systemic toxicity, fever, tachycardia, anaemia, elevated inflammatory markers, dehydration, and electrolyte disturbance.¹² The nurse plays an important role in early recognition and escalation. Changes in stool frequency, rectal bleeding, abdominal pain, abdominal distension, temperature, pulse, blood pressure, hydration status, and overall clinical condition should be carefully monitored.¹²

Potential complications include severe dehydration, electrolyte abnormalities, significant anaemia, toxic megacolon, perforation, sepsis, and venous thromboembolism. Failure to respond appropriately to medical treatment may necessitate rescue therapy or colectomy.¹² Acute severe colitis can be frightening and upsetting, particularly when patients are experiencing frequent bloody stools and urgency. Maintaining privacy, dignity, and clear communication is an important component of nursing care.

Complicated CD

CD may result in stricturing, penetrating, or fistulising complications. A patient with a known history of CD who develops worsening abdominal cramping, distension, vomiting, or inability to pass stool or flatus requires urgent clinical assessment because these symptoms may indicate intestinal obstruction.⁴

Perianal CD can be particularly challenging. Patients may experience pain, drainage, abscess formation, fistulae, and significant psychological distress. Management frequently requires close collaboration between gastroenterologists, colorectal surgeons, radiologists, specialist nurses, and other members of the multidisciplinary team.⁴ The 2024 ECCO surgical guideline emphasises multidisciplinary management of complicated CD and the importance of controlling sepsis before immunosuppressive treatment is undertaken in patients with septic complications.⁴

The nurse has an important role in recognising changes in symptoms, supporting wound and skin care, monitoring pain and drainage, and providing education. Perianal disease may be associated with embarrassment and reluctance to disclose symptoms, making a trusting therapeutic relationship particularly important.

Colorectal cancer and surveillance

Long-standing colonic inflammation is associated with an increased risk of colorectal neoplasia. Risk is influenced by factors including disease duration, extent of colonic involvement, inflammatory burden, family history, and associated conditions.¹³ Surveillance colonoscopy is an important element of long-term care for selected patients with colonic IBD. Modern surveillance increasingly focuses on high-quality colonoscopy, careful mucosal assessment, and identification of dysplasia.¹³

The updated British Society of Gastroenterology guideline on colorectal surveillance in IBD provides contemporary recommendations regarding surveillance strategies and dysplasia detection.¹³ Repeated colonoscopy can be burdensome for patients and may contribute to anxiety, discomfort, and reluctance to undergo further surveillance. Nurses can help by explaining why surveillance is necessary, addressing concerns about bowel preparation and sedation, and ensuring that patients understand the difference between routine monitoring and investigation of new symptoms.

Psychological wellbeing and quality of life

The psychological impact of IBD can be substantial. Patients may experience anxiety, depression, fatigue, altered body image, embarrassment, fear of incontinence, sexual difficulties, and social isolation. Young adults may particularly struggle with the unpredictability of bowel symptoms and the effect of disease on education, employment, relationships, and social activities.^11,14 The practical burden of urgency should not be underestimated. Patients may plan journeys around access to toilets, avoid eating before leaving home, or restrict participation in social events due to fear of an accident. Such experiences may not be identified unless specifically explored.¹⁴

A holistic nursing assessment should therefore extend beyond questions about bowel frequency. Asking how the illness is affecting the patient’s education, employment, relationships, sleep, sexual health, confidence, and social life can reveal problems that may otherwise remain hidden.¹⁴ Mental health support should be regarded as part of comprehensive IBD management rather than an optional addition to gastrointestinal care.^11,14

Medication adherence and shared decision-making

Adherence is particularly challenging in chronic relapsing diseases. A patient who feels well may question the need for ongoing medication, particularly when treatment has adverse effects or requires regular injections or infusions.^1,2 Nurses can help patients understand that clinical remission does not necessarily mean the absence of underlying inflammation. The purpose of maintenance treatment is to sustain disease control and reduce the risk of relapse and complications.^1,3,8

Shared decision-making is increasingly important because several effective advanced therapies may be available for an individual patient. Treatment decisions should incorporate evidence of effectiveness and safety alongside the patient’s circumstances and preferences. The patient’s lifestyle, work commitments, travel, injection preferences, fertility plans, and willingness to attend hospital-based treatment may all influence the most appropriate choice.^1,2 This approach recognises the patient as an active participant in treatment rather than a passive recipient of medical intervention.

Fertility, pregnancy, and sexual health

Fertility and reproductive health should be an integral part of routine IBD care. These discussions should be individualised, sensitive, and non-judgemental, with appropriate involvement of the relevant specialist team to support informed decision-making and continuity of care.^1,2,5 Patients may be reluctant to raise concerns about fertility, sexual health, or pregnancy, particularly when these issues are sensitive or difficult to discuss. Nurses are well placed to initiate these conversations in a sensitive, non-judgemental manner and ensure that appropriate advice, information, and referral are provided.⁵

Active IBD can adversely affect pregnancy outcomes, while individual medications require careful consideration when planning conception and throughout pregnancy. However, discontinuing effective treatment unnecessarily may precipitate a disease flare, which can present greater risks to both the patient and pregnancy than continuing appropriate therapy. Nurses play an important role in supporting informed decision-making and reinforcing the importance of maintaining disease control when planning pregnancy.^1,2,5

Women and men of reproductive age should have opportunities to discuss fertility, contraception, and pregnancy planning as part of routine IBD care. For nurses working in primary care, this is particularly relevant because contraception and sexual health consultations may provide an opportunity to identify gastrointestinal symptoms, medication concerns, or reproductive health questions that have not previously been discussed.

The expanding role of the IBD nurse

The specialist IBD nurse is an integral member of the multidisciplinary team, with a role that extends well beyond medication administration. Contemporary specialist nursing practice encompasses comprehensive clinical assessment, telephone and virtual consultations, coordination of investigations, support for treatment escalation, patient education, monitoring of advanced therapies, research, and service development. Through these responsibilities, specialist nurses provide continuity of care and act as a consistent point of contact for patients throughout the course of their disease.¹⁴ The third N-ECCO consensus statements published in 2026 further emphasise the breadth of nursing responsibilities in IBD care, reflecting the increasing complexity of the specialist nursing role.¹⁴

One of the greatest strengths of specialist nursing is continuity. Patients may see different consultants or attend different services over time, while the specialist nurse can provide an accessible and consistent point of contact. This continuity can facilitate earlier recognition of relapse, improve understanding of treatment, and help patients navigate the healthcare system.¹⁴

The principles of specialist IBD nursing extend beyond gastroenterology services. Nurses in general practice, emergency departments, community services, sexual health, occupational health, and student health may all encounter patients with IBD or symptoms suggestive of the disease. Knowledge of warning signs, medication safety, infection risk, and indications for urgent escalation is therefore relevant across nursing practice.¹⁴

Patient education and self-management

Patient education should be individualised and revisited throughout the disease course, reflecting changes in treatment, disease activity, and the patient’s circumstances. Patients should understand their diagnosis, treatment plan, monitoring programme, and the symptoms or changes that warrant clinical review. Education is particularly important in supporting patients to recognise the difference between expected day-to-day variation and changes that may indicate active disease.¹⁴

Education should also equip patients with practical skills for self-management. Patients benefit from understanding their usual bowel pattern, recognising changes from their baseline, and knowing when to contact their IBD team. Written information supported by personalised flare-management plans can help patients identify early changes in their condition, understand appropriate actions, and seek timely clinical advice.¹⁴

Effective education should be delivered in a manner that reflects the patient’s health literacy, preferences, and individual circumstances. Providing written information alone does not ensure that it has been understood or can be applied in practice. Nurses should encourage questions, use clear and accessible language, check understanding, and address misconceptions, particularly around diet, medication adherence, and the relationship between symptoms and underlying inflammation. This approach supports informed decision-making, strengthens self-management, and enables patients to take a more active role in managing their condition.¹⁴

Conclusion

IBD is a complex chronic condition requiring long-term, multidisciplinary management. The contemporary approach is no longer focused solely on relieving diarrhoea, abdominal pain, or rectal bleeding. Instead, treatment aims to achieve sustained control of inflammation, prevent progressive bowel damage, minimise corticosteroid exposure, reduce complications, and enable patients to maintain quality of life.

For nurses, this changing approach has significant implications. Nurses are central to assessment, education, medication management, infection prevention, vaccination, nutritional care, psychological support, and coordination of services. The specialist IBD nurse has an increasingly advanced clinical role, but the contribution of nurses across primary, community, and acute care settings is equally important.

Recognition of IBD symptoms, appropriate investigation and timely referral can influence the patient’s subsequent disease trajectory. In established disease, careful assessment of symptoms alongside objective markers of inflammation can help distinguish genuine relapse from other causes of gastrointestinal symptoms. Nurses are also ideally positioned to identify treatment-related complications, nutritional deficiencies, psychological distress, and difficulties with adherence.

IBD nursing requires an understanding that the impact of the disease extends well beyond the bowel. For many patients, the greatest burden may be the unpredictability of symptoms, the fear of urgency or incontinence, the disruption to education and employment, concerns about relationships and fertility, or the psychological impact of living with a chronic disease.

Modern IBD care requires clinical expertise, proactive disease management, and person-centred care, with nurses playing a central role in bringing these elements together. From early recognition and evidence-based assessment through treatment, monitoring, and long-term management, nurses support patients across the full course of CD and UC. Through individualised education, proactive monitoring, timely identification of deterioration, and continuity of care, nurses help optimise disease control, reduce the risk of complications, and support informed decision-making. Their contribution extends far beyond individual clinical encounters, providing consistent support throughout the disease journey and helping patients achieve the best possible health outcomes and quality of life while living with IBD.