Skip to content

GUIDE

Living with Crohn's Disease: Compact Guide 2022

Reading time approx. 9 minutes |  Last updated on 03.01.2022

By Dr. Peter Irving

Consultant Gastroenterologist,
St Thomas’ Hospital London

Crohn's Disease in a Nutshell

Crohn’s disease is one of the most common chronic inflammatory bowel diseases (IBD). The cause is not yet known exactly, and so far, there is no cure available. This means that relapses can repeatedly occur throughout life. If you are affected, the disease can not only be a burden for you because of the immediate symptoms such as frequent diarrhoea or pain but can also impact your job or partnership.
There are some treatment options to alleviate the symptoms. If your doctor finds the optimal drug therapy for you, there’s a good chance you can lead a largely symptom-free, comfortable life.

Research is continuously developing new and better options for Crohn’s disease patients. New active ingredients are intended to help people with moderate to severe Crohn’s disease, in particular, who have not yet found an optimal therapy.
Our guide focuses on what Crohn’s disease is, which factors increase its risk, and how patients can cope with the disease.

MorbusCrohn-Studie_Frau_blickt_in_Kamera_Foto_web-V1

OVERVIEW AND SYMPTOMS

Profile Crohn's disease

MorbusCrohn-Studie_Ziffer_1_Icon_Ratgeber_web-V1

The condition comes and goes with flare-ups, can affect the entire digestive tract and is unfortunately not yet curable: Crohn’s disease is, along with ulcerative colitis, the most common chronic inflammatory bowel disease (IBD). It is estimated that more than 300 out of every 100,000 people in Europe have Crohn’s disease.1

Although research into Crohn’s disease is ongoing, the cause is not yet fully understood. However, numerous treatment options aim to alleviate acute symptoms, slow down progression, and prevent relapses. This should significantly improve the quality of life of those affected.

The most important facts about Crohn's disease:

In Crohn’s disease, the immune system overreacts: The body’s own immune system fights intestinal bacteria or substances that we normally tolerate. The result is a persistent inflammatory reaction that can damage the intestinal mucosa over time.

In Crohn’s disease, the entire digestive tract from the oral cavity to the anus can become inflamed. However, the last section of the small intestine, called the terminal ileum, and the adjoining transitional area to the colon are particularly frequently affected.

The inflammation typically runs through all layers of the intestinal wall.

The condition often appears as flare-ups. This means that phases with acute symptoms alternate with symptom-free phases.


Depending on the severity of the symptoms and disease, Crohn’s disease may be categorized as mild, moderate, or severe.


In most people, symptoms first appear between the ages of 15 and 30. In general, however, people can also become ill at an older age.

Symptoms and coexisting conditions of Crohn's disease:

The symptoms of Crohn’s disease can vary. In addition, the onset of the disease can be gradual, with symptoms changing frequently.

Chronic diarrhoea (longer than four weeks) and abdominal pain with cramps (usually one to two hours after eating)

MorbusCrohn-Studie_Waage_Icon_web-V1

Weight loss

MorbusCrohn-Studie_Thermometer_Icon_web-V1

General complaints such as a non-specific feeling of illness or fever

MorbusCrohn-Studie_Knochen_Icon_web-V1

Occasional joint pain with or without swelling (in up to 50% of sufferers)

MorbusCrohn-Studie_Auge_Icon_web-V1

About 10% suffer from eye inflammations (e.g., of the conjunctiva), and 5-20% from skin changes (e.g., aphthae or nodular erysipelas/erythema nodosum)

Important: Early diagnosis and prompt initiation of therapy can alleviate Crohn’s disease and thus improve quality of life. It is also important to remain “true” to your treatment, i.e., take the medication conscientiously and according to the doctor’s prescription. Various options are available nowadays. The different active ingredients reduce the number of flare-ups and/or alleviate the symptoms during acute disease. If the therapy is not adhered to consistently, complications such as intestinal narrowing, fistulas or abscesses can occur more frequently, leading to pain and additional problems.

Are you interested in new treatment options?

Find out more under “Novel therapies”. Learn more about new treatments now →

Crohn’s disease patients can now take part in a study programme with a new active substance. Learn more about our “YELLOWSTONE Study Programme” Learn more about the YELLOWSTONE Study Programme now →

CAUSES

One condition – different triggers

MorbusCrohn-Studie_Ziffer_2_Icon_Ratgeber_web-V1
So far, it is unclear what exactly triggers Crohn’s disease. This is also the reason why there are no therapies that can cure Crohn’s disease. However, doctors assume that it is a multifactorial disease process. This means that various factors favour the development of the chronic inflammatory disease. These include:2

Risk factors

Our intestinal mucosa performs a vital barrier function and protects us from dangerous invaders such as harmful bacteria. In patients with Crohn’s disease, this protective function is disturbed. Bacteria and other foreign substances can penetrate the intestinal wall and trigger the immune system’s overreaction. It is also possible that an altered gut flora composition plays a role in patients with Crohn’s disease.3

Crohn’s disease is much more common in industrialized countries than in developing countries. This suggests that environmental influences and lifestyle play a role in its development. Smokers also have a significantly higher risk of developing Crohn’s disease. Whether certain foods contribute to the development of Crohn’s disease has not yet been fully clarified. For example, industrially processed foods are suspected of playing a role. A very unbalanced diet can also be a possible trigger. This is because the less varied the diet, the lower the bacterial diversity in the gut. And this is important for the gut flora and an intact immune system.

Stress, anxiety or other psychological problems do not increase the risk of Crohn’s disease. But they can negatively affect the course of the disease and the quality of life. In addition, Crohn’s disease can lead to psychological disorders such as depression.4

If a close relative has Crohn’s disease, the probability of developing the condition yourself is slightly increased. In addition, researchers have discovered several genes that are altered in some patients with Crohn’s disease. These genes are essential, for example, for the function of immune cells that are found in the intestinal mucosa.

DIAGNOSIS

From blood tests to colonoscopy

MorbusCrohn-Studie_Ziffer_3_Icon_Ratgeber_web-V1
Since the symptoms of Crohn’s disease are varied and can affect different areas, diagnosis is not always easy. There is no single method that can be used to diagnose Crohn’s disease. The previous medical history (anamnesis) is particularly important for making the diagnosis. The gastroenterologist asks about numerous points, such as the occurrence of chronic inflammatory bowel diseases in the family, typical symptoms of Crohn’s disease and signs of concomitant diseases.

In addition, several different examination methods are important for diagnosis, such as:2

Examination methods for diagnosis

Palpation of the abdomen and anus

Inflamed areas or tissue changes are examined with the help of a colonoscopy and/or gastroscopy. This can show the pattern of involvement in the digestive tract, and tissue samples can be taken for more detailed analysis. In addition, ultrasound can detect thickened intestinal walls, and an MRI or CT scan may also be necessary.

Elevated CRP values (C-reactive protein) indicate an acute inflammatory event. The blood sedimentation rate, i.e. the time it takes for red blood cells of a sample to settle, and the number of white blood cells (leukocytes), are also often increased in Crohn’s disease. In many cases, anaemia is present. A nutrient deficiency can also be indicative of Crohn’s disease.

Special laboratory tests also provide clues whether inflammation of the gut is present. For example, in Crohn’s disease, a protein called fecal calprotectin in the stool can be elevated, which is a sign of increased leukocytes in the gut and thus increased inflammatory activity.

The doctor can only make a diagnosis if they evaluate the patient’s medical history together with the current symptoms and the results of the various examinations.

DIET

Optimizing diet

MorbusCrohn-Studie_Ziffer_4_Icon_Ratgeber_web-V1
Many people hope that a special diet will either prevent Crohn’s disease or alleviate symptoms. Unfortunately, unlike other disorders like food intolerances, no special diet or nutritional regime for Crohn’s disease can achieve this.5 Positively formulated, however, this also means that whatever is good for the stomach and gut – and thus what you relish – is allowed! It is essential to eat a varied diet to ensure that the gut flora contains various health-promoting bacteria.

Crohn’s disease can lead to the body not receiving or absorbing enough nutrients. For example, diarrhoea and nausea may take away the appetite, or may cause fear that certain foods could cause discomfort. In addition, an inflamed intestine is less able to absorb or process nutrients, or they are also lost during diarrhoea due to fluid loss.

If the body does not get enough nutrients over a longer period, weight loss and lack of energy can occur – resulting in fatigue and tiredness.

The most important tips for an optimal diet in Crohn's disease

Make sure you have a balanced and varied diet: plenty of fruit, vegetables, and grain products. Animal foods, dairy products, fish, meat and eggs can be eaten in moderation. Alcohol, sweets, and snacks should remain an exception.

Drink plenty of fluids, preferably water or unsweetened teas.

Take your time to eat and chew your food thoroughly so that the body can absorb nutrients better.

Prepare food simply: short cooking or light sautéing at relatively low temperatures with little water and fat.


Adjust your diet during a flare-up or in case of complications: It is best to talk to your doctor about this. In the case of a very severe flare-up, artificial feeding may be necessary.

Are you interested in new treatment options?

Find out more under “Novel therapies”. Learn more about new treatments now →

Crohn’s disease patients can now take part in a study programme with a new active substance. Learn more about our “YELLOWSTONE Study Programme“ Learn more about the YELLOWSTONE Study Programme now →

TREATMENT

Finding the optimal therapy

MorbusCrohn-Studie_Ziffer_5_Icon_Ratgeber_web-V1
Crohn’s disease is a very individual disease: It can vary in severity and cause different symptoms. Therefore choosing an optimal therapy needs to be individualized. It depends primarily on the severity and the course of the disease and the pattern of infestation in the digestive tract. But your personal life situation and your resulting needs also play a major role. For the treatment of Crohn’s disease, a whole range of therapy options are available to you today.

The good news is that if an optimal treatment can be found, the disease activity can be reduced in the long term. A self-determined, largely symptom-free and ordinary life with a high quality of life is thus possible.

However, some prerequisites are necessary for this: On the one hand, the therapy for Crohn’s disease needs to be started as early as possible and should be sustained. On the other hand, your active cooperation is also required:

How to find the optimal therapy

1. Talk openly with your doctor about your current life situation and your personal needs, expectations of the therapy, or fears and anxieties.
2. There are no taboos: Don’t be afraid to talk just as openly about your complaints and also mental burden – regardless of where and how they occur, and how they feel.
3. Find out in detail about both the advantages and disadvantages of each available therapy.

4. No matter which therapy you choose: Always take your medication regularly and according to the doctor’s prescription.


5. Inform your doctor if the therapy does not bring the success you were hoping for.
Gastroenterologists who specialize in inflammatory bowel disease (IBD) will support and accompany you on your journey. Together, you will find the treatment that is right for you.

Treatment goals

Stop the spread of the inflammation

Prevent new flare-ups

Protect against permanent damage to the intestinal mucosa

Avoid complications, concomitant diseases, or surgery

Treatment options at a glance

Affected people live with Crohn’s disease (and the chosen course of treatment) for the rest of their lives. Therefore, choosing the right treatment is very important. Generally, it can be divided into three categories:
MorbusCrohn-Studie_Pille_Icon_web-V1

Drug treatment

MorbusCrohn-Studie_Eingriff_Icon_web-V1

Surgical interventions

MorbusCrohn-Studie_Regenschirm_Icon_web-V1

Psychological support

The most important drug classes in Crohn's disease:2

The most commonly used drugs are aminosalicylates. They have an anti-inflammatory effect on the gut by reducing the production of pro-inflammatory messenger substances. They are administered as tablets or suppositories, and are used during mild disease activity, flare-ups or during symptom-free periods to prevent new flare-ups.

Corticosteroids have many properties, including non-specific inhibition of the immune system. They have a fast and strong anti-inflammatory effect and are administered as tablets or infusions during a flare-up. However, they are not suitable for long-term treatment, as corticosteroids can cause serious side effects when taken over a longer time, especially in high doses.

These immunosuppressants non-specifically reduce the activity of the immune system and thus have a strong anti-inflammatory effect. However, the effect is delayed. This means that immunosuppressants have to be administered for several weeks before you feel an effect. Therefore, regular check-ups are necessary, especially at the beginning of the treatment.
Biologics are biotechnologically produced proteins that specifically intervene in Crohn’s disease’s immune system’s misdirected immune reactions. In this way, they also reduce the inflammation of the intestinal mucosa. Biologics are mainly used for moderate and severe courses of the disease. They are administered as injections or infusions. Another aspect that should be taken into account: Because they have a strong inhibitory effect on the immune system, the risk of infections may be increased. Pre-existing chronic infections such as hepatitis or tuberculosis must therefore be ruled out before therapy.
Every form of drug treatment has advantages and disadvantages. It is crucial that you discuss these in detail with your doctor and address the various aspects of the therapy: In what form is the medication taken (tablets, suppositories/rectal foam, infusions, injections)? How often do the medicines have to be taken? What side effects can occur? Are there any interactions with other medications? How well can the treatment be integrated into your everyday life? How often are check-ups necessary? What can you expect from the treatment – and what not?

If you have considered and discussed these points beforehand, it will usually be easier for you to remain consistent with your therapy – and thus benefit from it in the long term.

Surgical interventions

Surgical interventions may be necessary if Crohn’s disease is particularly severe and can no longer be controlled with medication or if complications such as fistulas, abscesses or narrowing of the bowel (stenosis) have occurred. Rarely, emergency operations have to be performed, for example, in the case of intestinal obstruction or intestinal perforation.

Psychological support

Crohn’s disease takes a toll on both the body and the mind. This is because chronic illnesses and their symptoms often put everyday life to the test. Whether at work, at home, or on vacation: Crohn’s disease can restrict lifestyle habits. In addition, symptoms such as constant diarrhoea or flatulence can trigger feelings of shame. And there is also the fear of the next flare-up.

Every person is different – and everyone deals with such an illness differently. In the long run, the mental burden may result in mental illness in some of those affected. These include, in particular, depression or anxiety. More than a third of all patients with Crohn’s disease are affected by depression. This, in turn, can negatively affect the disease itself – a vicious circle.

Therefore, do not be afraid to seek professional help. It is important to develop strategies that can help you deal with the disease and its limitations. Therapists can support you in this and thus reduce the mental burden.

Talk to your doctor, especially if:

You have a feeling of emptiness or meaninglessness,
You are listless and can hardly or only with great difficulty manage everyday tasks such as groceries,

You no longer take pleasure in things that you usually enjoy, 

as these could be signs of depression.

NOVEL THERAPIES

Researchers develop new treatment options

MorbusCrohn-Studie_Ziffer_6_Icon_Ratgeber_web-V1
Researchers are constantly developing new drugs to treat inflammatory bowel disease (IBD). The active ingredients currently in development use different mechanisms to modify the immune system specifically and thus reduce inflammation in IBD. In addition to biologics, new oral drugs with a targeted approach are also being developed. Their advantage is that they can be swallowed as capsules or tablets and do not have to be injected or administered as an infusion. One of these drugs has already been approved to treat ulcerative colitis, and others are currently undergoing clinical trials.6

YELLOWSTONE Study Programme
A new active ingredient is now also being studied in Crohn's disease

A global phase III clinical trial programme called YELLOWSTONE is currently investigating the efficacy and tolerability of a novel drug. The new active ingredient is taken as a capsule. It prevents special pro-inflammatory immune cells of the immune system, especially T cells, from entering the bloodstream from the lymph nodes. The number of cells that can migrate into the intestinal tissue is thus reduced, and the digestive tract’s chronic inflammation is potentially alleviated.7,8,9

Crohn's disease patients can now participate in the YELLOWSTONE Study Programme with this novel active substance

Crohn’s disease patients can now participate in the YELLOWSTONE Study Programme under certain conditions. If you are interested, you can find out more here:

Further information

Quality guideline

Writing this article is based on the German guideline for evidence-based health information “Leitlinie evidenzbasierte Gesundheitsinformation”.10

Authors

Dr Peter Irving, Dr. Cinthia Briseño

Medical review

Dr Sandra Hagen

Quality review

Lisa Klein

Date

03.Jan.2022

References

All references were accessed in June 2020.

Important note:

This article contains general advice and information. It should not be used for self-diagnosis or self-treatment and does not constitute a recommendation for therapy. It does not replace consulting a doctor. For individual questions, please contact your attending doctor.
Are you interested in the YELLOWSTONE Study Programme? Under certain conditions, participation is possible for you.
  • Siew C Ng, et al. 2018;390(10114):2769-2778.
  • Gomollón F, et al. J Crohns Colitis. 2017;11(1):3–25.
  • Wlodarska M, et al. Cell Host Microbe. 2015; 17:577–591.
  • Deutsche Morbus Crohn / Colitis ulcerosa Vereinigung DCCV e.V. Morbus Crohn – Ratgeber für Patientinnen und Patienten. 2014.
  • Limketkai BN, et al. Cochrane Database of Systematic Reviews 2019, Issue 2. Art. No.: CD012839.
  • Sandborn WJ. Gastroenterol Hepatol . 2015 May; 11(5): 338–340.
  • Sandborn WJ, et al. N Engl J Med. 2016; 374:1745-1762
  • Feagan et al., Lancet Gastroenterol Hepatol 2020 Jun 15;S2468-1253(20)30188-6.
  • Danese S, et al. J Crohns Colitis. 2018;12:S678-S686
  • Leitlinie evidenzbasierte Gesundheitsinformation, Version 1.0. 2017