In this anniversary special, Nigel interviews me about my decision to stop taking medication (infliximab, aka Remicade) for my inflammatory bowel disease, and what reflections I have on staying in remission four years later. 

Discussion Points

• My rationale for stopping infliximab after nearly a decade of IBD remission
• The emotional weight of sharing my decision publicly and the need for sensitivity
• The importance of not being labeled “anti-medication” when choosing to de-escalate
• How my consultant’s support helped with the decision
• Life stressors post-withdrawal — bereavement, menopause, moving house – and the surprising lack of impact on my Crohn's disease
• The critical role of monitoring: calprotectin, blood tests, colonoscopy and patient responsibility
• Nigel’s contrasting experience with vedolizumab and the discovery of small bowel inflammation via capsule endoscopy
• The need for healthcare professionals to embrace and not shut down conversations about drug withdrawal

📌 Listener Takeaways

• Every IBD journey is unique – comparison is unhelpful, autonomy is essential
• Coming off medication is not a rejection of medicine, but a personal trial
• Healthcare professionals should be open to discussing drug withdrawal, even if they don’t recommend it
• Life context and support systems are crucial when making treatment decisions
• Monitoring is non-negotiable: calprotectin, bloods, colonoscopy, and patient engagement are key
• Don’t rely solely on how you feel — tests can reveal hidden inflammation
• Patients must take ownership of their health, especially when off medication

🎯 Final Messages

To Patients: Only consider drug withdrawal if you feel truly ready. Examine your life context, support systems and emotional readiness. Don’t let others pressure you – this is your decision, and your health.

To Healthcare Professionals: Embrace conversations about drug withdrawal, even if you disagree. Patients need open dialogue, not closed doors. Your support can make all the difference in helping them navigate their choices safely.

📣 What’s Next

In the next episode, Rachel interviews Nigel about his 15-year anniversary of a life-changing experience with IBD. Stay tuned!

Follow Rachel at @bottomlineibd

Follow Nigel at @crohnoid