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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

#19 Rachel reflects on staying in Crohn's remission, four years after stopping infliximab

Wrestling the Octopus (IBD)