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

Send us Fan MailIn 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 PointsMy rationale for stopping infliximab after nearly a decade of IBD remissionThe emotional weight of sharing my decision publicly and the need for sensitivityThe importance of not being labeled “anti-medication” when choosing to de-escalateHow my consultant’s support helped with the decisionLife stressors post-withdrawal — bereavement, menopause, moving house - and the surprising lack of impact on my Crohn's diseaseThe critical role of monitoring: calprotectin, blood tests, colonoscopy and patient responsibilityNigel’s contrasting experience with vedolizumab and the discovery of small bowel inflammation via capsule endoscopyThe need for healthcare professionals to embrace and not shut down conversations about drug withdrawal📌 Listener TakeawaysEvery IBD journey is unique - comparison is unhelpful, autonomy is essentialComing off medication is not a rejection of medicine, but a personal trialHealthcare professionals should be open to discussing drug withdrawal, even if they don’t recommend itLife context and support systems are crucial when making treatment decisionsMonitoring is non-negotiable: calprotectin, bloods, colonoscopy, and patient engagement are keyDon’t rely solely on how you feel — tests can reveal hidden inflammationPatients must take ownership of their health, especially when off medication🎯 Final MessagesTo 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 NextIn the next episode, Rachel interviews Nigel about his 15-year anniversary of a life-changing experience with IBD. Stay tuned!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid