Wrestling the Octopus (IBD)

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

• Rachel (@bottomlineibd) and Nigel (@crohnoid)

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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