When to call about a medication

Most IBD treatments work by damping down part of the immune system, which changes what a fever means and what a reaction can look like.

Call 911 or go to an emergency department

  • Trouble breathing, wheezing, swelling of the lips, tongue, or throat, or feeling faint during or after an infusion or injection.
  • A high fever with severe pain, confusion, or a rash that is spreading quickly.

Call your care team today

  • Fever, chills, a persistent cough, or burning when you pass urine, while on a biologic, a JAK inhibitor, or an immunomodulator. An infection on these drugs deserves a call rather than a wait.
  • A rash, new or changing moles, or a sore that will not heal.
  • Wanting to stop a treatment, for any reason, including cost. Call before you stop, because stopping and restarting a biologic can cost you the drug permanently.

This list is not complete, and it was written by a patient rather than a clinician. Your own team may have given you different instructions for your situation; theirs win. When in doubt, call. Nobody on a care team minds a phone call that turns out to be nothing.

⊕The Reality of IBD Treatment

The landscape of IBD treatment has transformed dramatically over the past few decades. Modern biologics, targeted immunosuppressants, and refined surgical approaches have given patients more effective treatment options than ever before. For many people with Crohn's disease or ulcerative colitis, these advances have meant the difference between a life constrained by symptoms and one that's increasingly manageable. However, despite these remarkable innovations, it's important to acknowledge a fundamental reality: there is currently no cure for IBD, and no treatment works for everyone.

This isn't a failure of modern medicine, it's a reflection of how complex IBD is. Your disease is influenced by your unique genetics, your specific immune response, environmental factors, diet, stress, and the composition of your gut microbiome. What triggers remission in one patient may be ineffective in another. Some patients achieve complete symptom control on their first medication, while others may need to try several before finding one that works. Understanding this variability from the start helps you approach treatment with realistic expectations and a commitment to finding what works specifically for your disease.

◈Response Rates & Timelines

When researchers conduct clinical trials for IBD treatments, they report response rates, the percentage of patients who experienced a meaningful improvement in their disease. Two words get used almost interchangeably and should not be. Response means symptoms improved by some agreed amount; remission means the disease is quiet. Remission is the harder bar, and the numbers are lower than most people expect. Across the biologics and small molecules used in IBD, induction remission rates in trials generally land somewhere in the twenties to forties as a percentage, not the sixties or seventies, and they decay over the following year. In the PANTS cohort, 40.2% of people on infliximab were in remission at one year and 34.7% at three years, counted from everyone who started the drug rather than only those still taking it. The page on outstanding challenges goes through these figures with sources. There is one more thing a trial percentage hides. Some of the people who improve in the treatment arm would have improved on a placebo, and in IBD trials the placebo arm is not small, so the share of benefit attributable to the drug itself is smaller than the headline. None of this means the drugs do not work. It means you cannot know in advance which group you'll fall into, which is why it's essential to have a treatment plan that includes alternatives if your first choice isn't effective.

Equally important is understanding timelines. Most biologic medications take weeks or even months to reach their full effect. How long is reasonable depends on the drug and on your disease. Some are assessed at around eight weeks, some need fourteen or more before a verdict is fair, and in acute severe ulcerative colitis in hospital the decision is made in days. Ask your gastroenterologist what the checkpoint is for the specific drug you are starting, so you both know when you are deciding. Expecting dramatic improvement overnight sets you up for disappointment and potentially abandoning a medication that could have worked if given more time. Do not stop a biologic on your own. Stopping and later restarting one makes your immune system more likely to form antibodies against it, which can cost you that drug permanently and raise the risk of a reaction when it is restarted. Call your team first. Conversely, if your doctor suggests that a medication is unlikely to be effective after a reasonable trial period that assessment is usually worth acting on, and moving to another option is not a defeat. If you are unsure, asking for a second opinion at a center that specializes in IBD is a reasonable thing to do and most gastroenterologists will not take offense.

◇Having the Conversation

The most important discussions you can have with your gastroenterologist are those that establish clear expectations and treatment goals from the start. Before beginning any medication, ask your doctor about its expected response rate, how long you should wait before assessing effectiveness, and what success looks like for you specifically. Discuss what signs would indicate the treatment is working and what would trigger a change in strategy. Ask about potential side effects, both short-term and long-term, so you can make an informed decision about whether the benefits outweigh the risks for your particular situation.

Additionally, discuss alternative treatment options before you start something new. If your first choice medication doesn't work or causes intolerable side effects, what comes next? Understanding the hierarchy of options (your backup plan) gives you confidence that your doctor has thought through your care comprehensively. Finally, be explicit about your own goals and priorities. Are you aiming for complete symptom remission, or are you primarily focused on avoiding hospitalization? Do you want to avoid surgery at all costs, or would you consider surgery if it meant long-term quality of life improvement? These conversations transform treatment planning from a one-way prescription into a true partnership where your values guide the medical decisions, and your doctor's expertise shapes the strategy.

Sources

Sources for the specific claims on this page. Each link was checked on September 27, 2026. Where a number is not sourced here, treat it as one patient's understanding rather than an established figure, and ask your own team.

  1. Jairath V, Zou G, Parker CE, et al. Systematic review and meta-analysis: placebo rates in induction and maintenance trials of ulcerative colitis. Journal of Crohn's and Colitis. 2016;10(5):607–618. Link
  2. Jairath V, Zou G, Parker CE, et al. Systematic review with meta-analysis: placebo rates in induction and maintenance trials of Crohn's disease. Alimentary Pharmacology & Therapeutics. 2017;45(8):1021–1042. Link
  3. SKYRIZI (risankizumab-rzaa) prescribing information, Clinical Studies. DailyMed, U.S. National Library of Medicine. Every drug label reports its trial results alongside the placebo arm. Link
  4. Baert F, Drobne D, Gils A, et al. Early trough levels and antibodies to infliximab predict safety and success of reinitiation of infliximab therapy. Clinical Gastroenterology and Hepatology. 2014;12(9):1474–1481. Link
  5. Singh S, Murad MH, Fumery M, et al. Comparative efficacy and safety of biologic therapies for moderate-to-severe Crohn's disease. Lancet Gastroenterology & Hepatology. 2021;6(12):1002–1014. Link

Written by a patient, not a clinician. Gut Guide is written by a patient living with Crohn's disease who holds a Ph.D. in computational chemistry, not a medical degree. Nothing on this page has been reviewed by a gastroenterologist. It is not medical advice, not a diagnosis, and not a substitute for your own care team, and you should not start, stop, or change any treatment based on it. In an emergency call 911; for thoughts of suicide or self-harm call or text 988. Last reviewed by the author: September 27, 2026.