Living with IBD: A Practical Guide After Your Diagnosis

By Dr Jeffrey Tu, Consultant Gastroenterologist and Hepatologist, Shore Gastroenterology (North Shore & Northern Beaches, Sydney)

If you have just been diagnosed with Crohn's disease or ulcerative colitis, the most important decision you will make is not which tablet to take. It is who looks after you, and what they are aiming for.

Inflammatory bowel disease (IBD) is a lifelong condition with an unpredictable course. Most people live full, normal lives with it, but that depends on early, well-monitored treatment by a team that can respond quickly when things change.

This guide answers three questions patients ask me after diagnosis:

1. Who should I be seeing? A gastroenterologist backed by an IBD nurse, a dietitian and an IBD-experienced colorectal surgeon.

2. What are we aiming for? Not just feeling better, but healing of the bowel lining (mucosal healing), checked with faecal calprotectin and colonoscopy.

3. What are my options? From mesalazine through to biologics, plus lifestyle measures, and what is still being researched if standard treatment fails.

1. IBD is managed by a team, not a single doctor

The Australian IBD Standards, developed by Crohn's & Colitis Australia, state that IBD is best managed by a multidisciplinary team. Yet a national audit of 71 Australian hospitals found only one had a complete multidisciplinary IBD service, and fewer than 40% had an IBD nurse (Massuger et al., Intern Med J 2019). Hospitals with even a partial IBD service (an IBD nurse, a helpline and a clinical lead) delivered measurably better care.

The core team should include:

• Gastroenterologist with IBD experience, who sets the treatment strategy and performs your colonoscopies.

• IBD nurse (see below), your day-to-day point of contact.

• Dietitian with gut expertise, for nutrition, weight loss, strictures, iron and vitamin deficiencies, and avoiding unnecessary food restriction.

• Colorectal surgeon experienced in IBD, involved early rather than only in emergencies.

• Others as needed: psychologist, pharmacist, radiologist (MRI enterography), stomal therapist and your GP.

Why the IBD nurse matters so much

IBD does not flare on a schedule. A flare can start on a Friday night, or two weeks before an overseas trip. The IBD nurse is the person who makes the system respond in days rather than weeks:

• Triage. Is this a flare, an infection, a medication side effect, or something needing the emergency department? The nurse can arrange a stool test, bloods or an early review.

• Fast liaison. A direct line to your gastroenterologist, so treatment can be adjusted without waiting for the next routine appointment.

• Medication safety. Monitoring blood tests on immunomodulators, safety screening before biologics, and infusion or injection education.

• Navigating government paperwork. In Australia, biologic and small-molecule drugs are subsidised by the PBS only under strict authority rules from Services Australia. An initial application needs documented disease severity and prior treatment history. Continuing approval requires evidence of response within set time frames, such as a Crohn's Disease Activity Index of 150 or less, plus pathology and imaging (Services Australia PB088). Switching drugs or restarting after a break needs a separate application (Services Australia: Crohn's disease adult). A missed deadline can mean a lapse in your medication, so having someone track these dates is genuinely important.

2. The goal: feeling well and a healed bowel

In my clinical practice, I aim for three complementary outcomes: complete symptom remission, normalisation of faecal calprotectin (ideally below 50 µg/g), and complete endoscopic mucosal healing, wherever safely achievable.

Why not rely on symptoms alone? Symptoms and inflammation often do not match. Some people feel fine while ulcers keep damaging the bowel silently. Others still have symptoms from scarring, bile acid diarrhoea or overlapping irritable bowel syndrome when the inflammation has settled. Treating symptoms alone risks under-treating the first group and over-treating the second.

The international STRIDE-II consensus, from the International Organization for the Study of IBD, sets clinical remission and endoscopic healing as the long-term targets. It adds absence of disability and restoration of quality of life (Turner et al., Gastroenterology 2021). This approach is called treat-to-target: set a measurable goal, check it at agreed time points, and step up treatment if it is not met.

Faecal calprotectin: your inflammation "thermometer"

Calprotectin is a protein released by white blood cells into the bowel. A simple stool test measures it.

• Normal or low usually means the bowel is not actively inflamed.

• Rising can flag a relapse weeks to months before symptoms return.

• Persistently raised while you feel well is a signal to look more closely.

In the CALM trial, people with Crohn's disease whose treatment was escalated on calprotectin and CRP results, not just symptoms, had significantly higher rates of mucosal healing at 48 weeks: 46% versus 30% (Colombel et al., Lancet 2017). Calprotectin is cheap, non-invasive and can be repeated every few months.

Where colonoscopy fits

Calprotectin is a screening tool, not a final answer. Colonoscopy remains the gold standard to:

• confirm healing, usually 6 to 12 months after starting or changing treatment;

• check for dysplasia (pre-cancer), since long-standing colitis increases bowel cancer risk and needs surveillance colonoscopy;

• take biopsies when results and symptoms disagree.

For small bowel Crohn's disease, which a colonoscope cannot fully reach, MRI enterography or intestinal ultrasound is used to assess the bowel wall.

3. Medications: matching treatment to severity

Treatment is chosen by disease type (Crohn's or colitis), extent, severity and your risk of complications. Patients at higher risk, such as those with extensive or penetrating Crohn's or young age at diagnosis, often benefit from moving to advanced therapy early rather than climbing every rung of the ladder.

Drug group	Examples	Main role	What to know
5-ASA (aminosalicylates)	Mesalazine, sulfasalazine	First-line for mild to moderate ulcerative colitis	Tablets, granules, suppositories or enemas. Combining oral and rectal forms works better for left-sided colitis. Limited benefit in Crohn's.
Corticosteroids	Prednisolone, budesonide	Short-term control of a flare	A bridge, never a maintenance plan. Repeated or long courses signal the need to step up.
Immunomodulators	Azathioprine, mercaptopurine, methotrexate	Steroid-sparing maintenance; often combined with infliximab	Take 2 to 3 months to work. Need regular blood tests and skin cancer checks.
Biologics (injections or infusions)	Anti-TNF: infliximab, adalimumab, golimumab. Anti-integrin: vedolizumab. Anti-IL-12/23 and anti-IL-23: ustekinumab, risankizumab, mirikizumab, guselkumab	Moderate to severe Crohn's or colitis	Targeted, highly effective. Need TB and hepatitis screening first. PBS access depends on authority criteria.
Small molecules (tablets)	JAK inhibitors: tofacitinib, upadacitinib. S1P modulators: ozanimod, etrasimod	Mostly moderate to severe ulcerative colitis; upadacitinib also Crohn's	Fast-acting oral options. Specific safety monitoring applies.

Not every drug listed is PBS-subsidised for every indication, and PBS listings change regularly. Your gastroenterologist will advise what is available and subsidised for your situation.

Two practical points matter as much as the choice of drug:

• Therapeutic drug monitoring. For drugs such as infliximab and adalimumab, measuring blood drug levels and antibodies explains why a drug stops working, and whether to increase the dose or switch.

• Surgery is a treatment, not a failure. For a short scarred segment of Crohn's, a localised resection can give long remission. For colitis that will not settle, a colectomy can be life-changing. Early involvement of an IBD-experienced colorectal surgeon gives you more options.

4. Lifestyle: what helps, and what the evidence says

Lifestyle measures support medical treatment; they do not replace it. Here is where the evidence currently stands.

Vitamin D. People with IBD are more likely to be vitamin D deficient. In a meta-analysis of 27 studies and 8,316 patients, low vitamin D was linked to more disease activity, more mucosal inflammation and higher relapse risk (Gubatan et al., Aliment Pharmacol Ther 2019). Trials of supplementation suggest fewer relapses, though the studies are small (Li et al., Medicine 2018). We check levels and replace when low. It is cheap, safe and also protects bone health, especially after steroid courses.

Diet. There is no single "IBD diet", and overly restrictive diets can cause malnutrition. The International Organization for the Study of IBD's dietary guidance suggests (Levine et al., Clin Gastroenterol Hepatol 2020):

• More fruit, vegetables and oily fish (omega-3), unless you have a stricture.

• Less red and processed meat (especially in ulcerative colitis), saturated and trans fats.

• Fewer ultra-processed foods containing emulsifiers and additives such as carboxymethylcellulose, polysorbate-80, carrageenan and maltodextrin.

Lactose. Lactose intolerance is not an automatic part of IBD. It is more likely with small bowel Crohn's disease and during a flare. Dairy is an important calcium source for bone health, so cut back only if it clearly causes symptoms. Lactose-free milk, hard cheese and yoghurt are usually well tolerated.

Complex carbohydrates and fibre. The same guidance found insufficient evidence to recommend changing intake of complex carbohydrates, refined sugar, or wheat and gluten in either Crohn's or colitis. Wholegrains, legumes and fibre are fine for most people. The exception is a narrowed (strictured) bowel, where fibrous, hard-to-digest foods can cause a blockage and a low-residue diet is advised.

The Specific Carbohydrate Diet (SCD). The SCD removes all grains, starches, most sugars and processed foods, and is popular online. It has been tested head-to-head in the DINE-CD trial: 191 adults with mild to moderate Crohn's disease followed either the SCD or a Mediterranean diet. Symptomatic remission at 6 weeks was similar, 46.5% versus 43.5%, and so was calprotectin response (Lewis et al., Gastroenterology 2021). Because a Mediterranean-style diet is easier to follow and has broader health benefits, it is the better choice for most people.

If inflammation is controlled but bloating, wind or loose stools persist, poorly absorbed fermentable carbohydrates (FODMAPs) may be responsible. A short, dietitian-guided low-FODMAP trial can ease these symptoms, but it does not treat the inflammation itself.

Stress and mental health. Stress does not cause IBD, but anxiety and depression are common in IBD and are associated with worse symptoms and quality of life. Australian patients consistently ask for psychological support as part of their care (Crohn's & Colitis Australia, My IBD Experience 2018). Gut-directed psychology, CBT and good sleep are worth taking seriously.

Probiotics. Despite heavy marketing, the American Gastroenterological Association found insufficient evidence to recommend probiotics for Crohn's disease or ulcerative colitis outside clinical trials. The exception is pouchitis after colectomy, where a specific multi-strain product is suggested (Su et al., Gastroenterology 2020; summary). Save your money unless your gastroenterologist recommends a specific product for a specific reason.

Also important: avoid regular anti-inflammatory painkillers (NSAIDs) where possible, and keep up skin checks and cervical screening if you are on immunosuppressants.

5. Still not settling? Therapies under evaluation

Most patients achieve good control with the treatments above. A minority continue to struggle despite several advanced therapies, or cannot tolerate them. For these patients, a few approaches have published evidence but are not yet standard care. They are considered case by case, alongside conventional treatment, never instead of it.

Anti-MAP therapy (AMAT) for Crohn's disease

One long-standing hypothesis is that a bacterium, Mycobacterium avium subspecies paratuberculosis (MAP), contributes to Crohn's disease in some people. Anti-MAP therapy is a combination of three antibiotics: clarithromycin, rifabutin and clofazimine.

• In the phase 3 MAP US trial of 331 patients with moderate to severe Crohn's, adding the combination (RHB-104) to standard treatment gave 26-week remission in 36.7% versus 22.4% on placebo (Graham et al., Antibiotics 2024; trial record).

• An earlier Australian two-year trial (Selby et al., Gastroenterology 2007) did not show a sustained benefit, so the evidence is mixed.

• The combination is not TGA-approved for Crohn's disease. It requires careful monitoring for drug interactions, liver tests, heart rhythm (QT interval) and skin discolouration from clofazimine.

Faecal microbiota transplantation (FMT) for ulcerative colitis

FMT transfers screened, processed stool from healthy donors to restore a healthier gut microbiome. It is established treatment for recurrent C. difficile infection. In ulcerative colitis, several randomised controlled trials, many from Australia, have shown benefit:

• A Sydney multi-donor trial: 27% steroid-free remission versus 8% on placebo (Paramsothy et al., Lancet 2017).

• An Adelaide trial: 32% versus 9% at 8 weeks (Costello et al., JAMA 2019).

• Pooled trials: clinical remission 28% with FMT versus 9% with placebo (Costello et al., Aliment Pharmacol Ther 2017).

The results are encouraging but remain modest, with ongoing uncertainty about optimal protocols, long-term efficacy and safety. FMT is not currently an established routine treatment for ulcerative colitis.

GLP-1 receptor agonists (semaglutide, tirzepatide)

These weight-loss and diabetes drugs have anti-inflammatory effects, and many IBD patients now take them for metabolic reasons. The evidence on IBD itself is conflicting:

• A 2026 matched cohort of 150 UC patients on GLP-1 drugs reported higher symptomatic remission at 12 weeks than matched controls: 66.7% versus 25.3% (Inflamm Bowel Dis 2026).

• A larger 2026 analysis designed to mimic a randomised trial found no reduction in one-year relapse in stable IBD, although the drugs appeared safe (AGA News, July 2026).

• Randomised trials are now under way, for example tirzepatide added to biologics in overweight patients with Crohn's (NCT06774079).

For now, GLP-1 drugs are reasonable when you need them for weight or diabetes. They are not a treatment for IBD itself. They slow gut transit, which needs care in people with strictures.

6. Choosing where to be treated: what a good IBD unit looks like

Whether public or private, a good IBD service should tick these boxes:

• A gastroenterologist with genuine IBD experience who uses treat-to-target, not symptom-chasing.

• An IBD nurse or practice nurse you can actually reach between appointments, who handles flares and PBS paperwork.

• A dietitian with gut expertise.

• An IBD-experienced colorectal surgeon in the team, consulted early rather than only in emergencies.

• Access to monitoring: faecal calprotectin, colonoscopy with dysplasia surveillance, and MRI or intestinal ultrasound for small bowel disease.

• Experience with every class of therapy, including all biologics and small molecules, therapeutic drug monitoring, and infusion access.

• Willingness to consider novel or emerging therapy, carefully and with evidence, when conventional treatment has failed.

This article is general information and does not replace individual medical advice.

References

1. Crohn's & Colitis Australia. Australian IBD Standards 2016.

2. Massuger W, et al. The Crohn's & Colitis Australia IBD Audit: measuring the quality of care in Australia. Intern Med J 2019.

3. Services Australia. Crohn's disease adult: PBS authority requirements and continuing authority form PB088.

4. Turner D, et al. STRIDE-II: treat-to-target goals in IBD. Gastroenterology 2021;160:1570–83.

5. Colombel JF, et al. Effect of tight control management on Crohn's disease (CALM). Lancet 2017;390:2779–89.

6. Gubatan J, et al. Vitamin D status and clinical outcomes in IBD: meta-analysis. Aliment Pharmacol Ther 2019;50:1146–58.

7. Li J, et al. Efficacy of vitamin D in treatment of IBD: a meta-analysis. Medicine 2018;97:e12662.

8. Levine A, et al. Dietary guidance from the International Organization for the Study of IBD. Clin Gastroenterol Hepatol 2020;18:1381–92.

9. Su GL, et al. AGA clinical practice guidelines on probiotics. Gastroenterology 2020.

10. Crohn's & Colitis Australia. My IBD Experience: patient experience report 2018.

11. Graham DY, et al. Randomized, double-blind, placebo-controlled study of anti-mycobacterial therapy (RHB-104) in active Crohn's disease. Antibiotics 2024;13:694. Trial record NCT01951326.

12. Selby W, et al. Two-year combination antibiotic therapy with clarithromycin, rifabutin and clofazimine for Crohn's disease. Gastroenterology 2007.

13. Paramsothy S, et al. Multidonor intensive FMT for active ulcerative colitis. Lancet 2017;389:1218–28.

14. Costello SP, et al. Effect of FMT on 8-week remission in ulcerative colitis. JAMA 2019;321:156–64.

15. Costello SP, et al. FMT for induction of remission in active UC: meta-analysis. Aliment Pharmacol Ther 2017.

16. GLP-1 receptor agonist therapy and symptomatic remission in ulcerative colitis: a matched cohort study. Inflamm Bowel Dis 2026.

17. AGA News. GLP-1 drugs don't lower IBD relapse but appear safe. July 2026.

18. ClinicalTrials.gov. GLP-1 RA and diet in IBD (tirzepatide in Crohn's), NCT06774079.