IBD Science for Patients

Strategies for Managing IBD When Treatment Options Seem Limited

When you live with Crohn’s disease or ulcerative colitis, reaching a flare-free life is the ultimate goal. However, some patients face refractory IBD, a challenging situation where your gut inflammation continues or returns despite trying multiple advanced biologic and targeted therapies. Cycling through drug after drug without finding lasting relief can leave both you and your medical team feeling like you have run out of options.

Leading international experts challenged the idea that running out of standard drug choices means having no choices left. Their report reveals that finding a path forward requires shifting focus from simply trying the next pill or injection to re-evaluating your gut biology, assessing structural tissue damage, navigating insurance hurdles, and listening to your personal goals.

Is It Biologic Failure or Structural Damage?

When an advanced medication stops working, it’s natural to assume your immune system has simply overpowered the drug. However, Dr Peter Higgins, Professor of Gastroenterology at the University of Michigan, explained that refractory disease is often driven by structural changes rather than active immune attacks alone.

Over time, long-standing inflammation can cause intestinal fibrosis (irreversible tissue scarring) and strictures (narrowed passages in the bowel). These structural issues can cause pain, cramping, and blockages that feel exactly like a severe disease flare-up.

To check for this, doctors use cross-sectional imaging, an advanced scanning technology such as MRI or CT enterography that reads through the full thickness of the bowel wall to distinguish between active swelling and permanent scar tissue. If a segment of your bowel has become fibrotic, no amount of immunosuppressive medication will open the narrowing. Dr Higgins warned that continuously escalating drug doses without checking for structural damage can delay necessary surgical care, stating that there is a point where medical optimisation turns into inertia, risking bowel loss. In these cases, targeted surgery is not a failure, but a powerful method of disease control.

The Power of Combination Advanced Therapy

For patients who still have active, ongoing inflammation despite trying multiple medicines, experts discussed an emerging approach called combination advanced therapy. This strategy involves using two advanced medications at the same time, such as pairing two biologics or combining a biologic with a daily small-molecule pill.

Dr Gil Melmed, Co-Director of Clinical Inflammatory Bowel Disease at Cedars-Sinai in Los Angeles, outlined a safety-first framework for combination treatment:

  • Pairing Efficacy with Safety: Doctors select one highly potent medication (such as an anti-TNF antibody or a Janus kinase inhibitor) to rapidly quell inflammation, and pair it with a second drug that has a very reassuring safety profile (such as an IL-23 inhibitor). This targets two different inflammatory pathways without doubling patient risk.
  • Moving Beyond ‘Earning’ Treatment: While combination therapy was previously reserved as a last resort, emerging data from clinical trials such as VEGA and DUET show that using combination therapies earlier in the disease course yields the greatest healing benefits.

Overcoming Insurance Barriers and Ostomy Complications

Even when combination therapy is the best medical choice, obtaining insurance approval presents a major hurdle. Dr David Choi, Associate Director of Pharmacy Services at the University of Chicago Medicine, noted that submitting requests for two advanced therapies simultaneously almost always results in an automatic denial. Instead, pharmacy teams use a stepwise submission approach, applying for medications sequentially or utilising dual indications across specialities to secure coverage.

For patients living with an ostomy, refractory symptoms may not be caused by gut inflammation. Kate Riebesehl, a certified wound ostomy nurse at the University of Cincinnati, highlighted that 50 per cent of ostomy patients develop a parastomal hernia within their first year, rising to 80 per cent within five years. A parastomal hernia is a bulge or weakness in the abdominal wall next to the stoma site.

The resulting pain, blockage symptoms, and poor bag fit are frequently misattributed to an IBD flare-up, leading to unnecessary drug increases. Annual reviews with a specialist ostomy nurse can identify these mechanical issues early. Similarly, peristomal pyoderma gangrenosum (a rare, painful inflammatory skin ulcer that forms around a stoma) requires close collaboration between gastroenterology, dermatology, and wound care teams to ensure proper healing.

Study Scale and Context

This report is a comprehensive expert consensus synthesis presented at the 2026 Crohn’s & Colitis Congress. Rather than tracking a single group of patients in one hospital, this work synthesises clinical trial data (including the VEGA and DUET studies) alongside real-world evidence from multidisciplinary medical centres across the United States. It reflects the combined clinical experience of leading gastroenterologists, colorectal surgeons, specialist pharmacists, and certified ostomy nurses.

Why This Matters to You as a Patient

If you feel that your Crohn’s or colitis treatment options are running out, this expert report provides vital reassurance for your healthcare journey:

  1. New Perspectives on Refractory Symptoms: This report gives you the scientific proof that ongoing symptoms do not automatically mean your body is immune to all drugs. Discovering whether your discomfort is caused by active inflammation, scar tissue, or stoma complications helps you and your doctor select the exact right fix.
  2. Access to Novel Treatment Strategies: Learning about combination advanced therapies and early trial evidence helps you discuss personalised precision options with your specialist before giving up on medical management.
  3. The Importance of a Whole-Team Approach: Managing complex IBD requires more than a single drug prescription. You have the right to a multidisciplinary team, including gastroenterologists, surgeons, pharmacists, dietitians, and specialist stoma nurses, working together to protect your gut and your quality of life.

By taking a step back to re-evaluate your disease, you can work with your care team to build a tailored plan that brings you closer to long-term healing and health.

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