Crohn’s Disease: What Every Patient Should Know – Key Questions and Answers from Leading European Experts

 The information in this article is based on the most recent and widely recognized treatment guideline for Crohn’s disease, published in the Journal of Crohn’s and Colitis in 2020 under the title “ECCO Guidelines on Therapeutics in Crohn’s Disease: Medical Treatment.” The guideline was developed by 48 leading gastroenterologists, surgeons, and researchers from across Europe, selected by the European Crohn’s and Colitis Organisation (ECCO) based on their expertise, academic achievements, and clinical experience. Patients living with Crohn’s disease were also involved in the discussions to ensure that the recommendations reflect real-world patient needs. The guideline was created using the internationally recognized GRADE methodology, which ensures the highest level of scientific evidence and transparency.

In the following questions and answers, you’ll find a summary of the most important aspects every Crohn’s disease patient should be aware of—presented in a clear, practical format and entirely based on the data from this leading publication.

“Crohn’s disease cannot be completely cured, but with proper and timely treatment, many patients achieve long-term remission and a high quality of life.”

Expert Opinions

When it comes to treating Crohn’s disease, patients and their loved ones often face difficult decisions related to therapy choices, side effects, and long-term outcomes. The European Crohn’s and Colitis Organisation (ECCO) has summarized the most up-to-date, evidence-based recommendations derived from meta-analyses, systematic reviews, and the opinions of leading scientists and clinicians. Below are key expert opinions and excerpts from the guideline—each paired with a guiding question and a brief explanation.

1. What is the role of 5-aminosalicylates (5-ASA) in the treatment of Crohn’s disease?

ECCO statement: “We suggest against the use of 5-ASA for induction of remission of Crohn’s disease [weak recommendation, moderate-quality evidence].”

Explanation: Although 5-ASA drugs (mesalamine and sulfasalazine) are commonly used in other inflammatory bowel diseases, they have not shown significant effectiveness in inducing remission in Crohn’s disease. This means that for most patients with this condition, other therapies are preferable.

2. When should budesonide and systemic corticosteroids be used?

ECCO statement: “We recommend using budesonide for the induction of clinical remission in patients with active mild-to-moderate Crohn’s disease limited to the ileum and/or ascending colon [strong recommendation, moderate-quality evidence].”

“In patients with active, moderate-to-severe Crohn’s disease, we suggest the use of systemic corticosteroids for the induction of clinical response and remission [weak recommendation, moderate-quality evidence].”

Explanation: Budesonide is recommended for patients with mild to moderate Crohn’s disease affecting only the ileum and/or ascending colon, due to its lower risk of systemic side effects. For patients with more severe disease, systemic corticosteroids (like prednisone) remain effective but must be used cautiously due to the risk of adverse effects.

3. What are the recommendations for maintenance therapy in Crohn’s disease?

ECCO statement: “We recommend against the use of oral 5-aminosalicylic acid for maintenance of medically induced remission in patients with Crohn’s disease [strong recommendation, low-quality evidence].”

“Thiopurines are recommended for the maintenance of remission in patients with steroid-dependent Crohn’s disease [strong recommendation, moderate-quality evidence].”

“We recommend against the early introduction of thiopurine therapy in patients with newly diagnosed Crohn’s disease for maintaining remission [weak recommendation, low-quality evidence].”

Explanation: 5-ASA drugs should not be used for maintenance therapy in Crohn’s disease—they do not reduce the risk of relapse. Thiopurines (azathioprine, mercaptopurine) are effective for maintaining remission in patients who are steroid-dependent. However, they should not be started preventatively in patients with newly diagnosed, uncomplicated disease.

4. What is the role of methotrexate in maintaining remission?

ECCO statement: “After 40 weeks, the proportion of patients who remained in remission was higher in the MTX group than in the placebo group [65% vs 39%; RR: 1.67; 95% CI: 1.05–2.67].”

Explanation: Methotrexate (MTX), administered intramuscularly once a week, can be an option for maintaining remission in patients who responded to induction therapy with MTX. However, it's not suitable for everyone (e.g., women planning pregnancy), and it can cause nausea and liver issues in some patients, requiring careful monitoring.

5. Which biologics are used to maintain remission, and how is the decision made?

ECCO statement: “Two systematic reviews analysed the effect of maintenance treatment with anti-TNFs [infliximab, adalimumab, and certolizumab pegol] administered to patients with CD who had achieved disease remission with the same anti-TNF drug…”

Explanation: If Crohn’s disease is brought into remission with a biologic therapy (such as infliximab or adalimumab), continuing the same medication as maintenance therapy is usually effective. The decision is individualized—based on tolerability, previous treatment responses, side effects, and patient preferences.

6. What are the risks of long-term use of immunosuppressants and biologics?

ECCO expert warning: “The overall risk of inducing serious AEs during maintenance treatment with thiopurines was significantly higher than with placebo [RR: 2.45; 95% CI: 1.22–4.90]. The rate of serious AEs reported in patients treated with thiopurines versus placebo was 9.0% versus 2.9%. Pancreatitis, leukopenia, nausea, allergic reaction, and infections were the most frequent serious AEs.” (Regarding thiopurines)

“A large nationwide cohort study showed that combination therapy is associated with higher risk for lymphoma and serious infection, as compared with anti-TNF monotherapy. Therefore the decision is left to the clinician, who should consider patient characteristics, costs, risks, and local regulations.” (Regarding combination therapy)

Explanation: While effective, immunosuppressants (like thiopurines and methotrexate) and biologics may increase the risk of serious infections and, rarely, lymphoma. That’s why doctors must weigh the potential benefits and risks based on patient age, comorbidities, and personal history.

7. Why are monitoring and individualized care important for every Crohn’s patient?

ECCO key recommendation: “It is of crucial importance to monitor disease and therapy at regular intervals based on objective and measurable markers [endoscopy, C-reactive protein (CRP), calprotectin, imaging]. This approach will provide the clinician with the possibility to adjust therapy if needed, thereby maximising the probability of achieving tight control of the disease and inflammation, which is believed to be essential to prevent disease progression.”

Explanation: Since symptoms don’t always align with disease activity, it’s essential to monitor the disease using objective tools—endoscopy, calprotectin and CRP tests, imaging. This allows for timely therapy adjustments and helps prevent complications over the long term.

Additional Advice for Patients

• Never stop or change your treatment without consulting your gastroenterologist.

• A healthy lifestyle (no smoking, correcting nutritional deficiencies, vaccinations, sun protection, etc.) is part of therapy.

• Seek a second opinion if you’re uncertain about your treatment plan.

• Make use of patient organizations—they often provide up-to-date information and emotional support.

Questions and Answers

1. Is it possible to completely cure Crohn’s disease?

Answer: Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract with no known cure. As the guideline states, “a curative therapy is not yet available.” This means there is currently no treatment that can completely eliminate the disease. The goal of therapy is to achieve and maintain remission, reduce inflammation, and improve quality of life.

2. Why is regular monitoring important even when I have no symptoms?

Answer: The guideline emphasizes that “there is often a disconnect between clinical symptoms and underlying inflammation, it is of crucial importance to monitor disease and therapy at regular intervals based on objective and measurable markers.” In other words, even if you feel well, inflammation may still be present and can cause complications. Regular check-ups (endoscopy, CRP, calprotectin, imaging) help your doctor assess the true state of your disease and adjust treatment as needed.

3. What does “steroid dependence” mean, and how is it managed?

Answer: The article states that “the presence of corticosteroid dependency or excess ... should all warrant a steroid-sparing strategy.” This means that if you’re unable to reduce or stop corticosteroids below a certain dose or you relapse after stopping them, you are considered steroid-dependent. In such cases, switching to another therapy (e.g., immunosuppressants or biologics) is typically recommended to avoid long-term side effects.

4. How does Crohn’s disease affect my lifestyle, and what are the most important daily recommendations?

Answer: The guideline notes that beyond medications, “the management of CD should also involve a series of general health care maintenance measures. Patients should be encouraged to stop smoking, nutritional deficiencies should be corrected, therapy-related side effects ... should be monitored, and appropriate guidance or surveillance for vaccinations, osteoporosis, and sun protection should be implemented.” The most important steps patients can take include quitting smoking, maintaining good nutrition, monitoring for side effects, getting vaccinated, and protecting bone and skin health.

5. How is the most appropriate therapy for me chosen—is there a one-size-fits-all treatment?

Answer: The guideline clearly states that “stratifying patients according to their prognostic risk factors and individualising therapy are crucial steps to optimise patient management.” This means treatment choice depends on many factors—location and severity of disease, previous treatment responses, complications, individual risk factors, personal preferences, age, and even cost. There is no universal best option—each treatment plan should be tailored through a shared decision-making process between patient and gastroenterologist.

Conclusion

The ECCO guidelines reflect the most current global knowledge and experience in treating Crohn’s disease. Choosing the right therapy and managing each patient relies not only on the best available scientific evidence, but also on individual characteristics, risk factors, and personal needs. It’s important for patients to understand that medical advances continue to expand the options for controlling this chronic condition and improving quality of life. Open communication with your gastroenterologist and active participation in treatment decisions are crucial for therapeutic success. This article summarizes the key insights from leading European experts, brought together by ECCO, and aims to support patients and their families in the journey toward informed and confident management of Crohn’s disease.

Source: ECCO Guidelines on Therapeutics in Crohn’s Disease: Medical Treatment, Journal of Crohn’s and Colitis, 2020, 4–22. doi:10.1093/ecco-jcc/jjz180 Authors: Joana Torres, Stefanos Bonovas, Glen Doherty, Torsten Kucharzik, Javier P. Gisbert, et al., on behalf of the European Crohn’s and Colitis Organisation (ECCO)