Living with Inflammatory Bowel Disease

Work together with the healthcare team to take decisions and address any concerns through regular check-ups.

Learn and stay informed about the disease so that you can be responsible for your own self-care and disease management.

Take the medication prescribed by your doctor correctly to prevent symptoms from reappearing and keep the condition in remission. If you do not, then the prognosis could worsen due to the appearance of complications.

Assimilating some healthy lifestyle habits, such as eating a balanced diet, giving up smoking and looking after your emotional well-being, will contribute to good control of the disease and therefore improve your quality of life.

Gastroenteritis can trigger the onset of the disease and the appearance of a flare-up.

Fatigue. Fatigue can affect patients with inflammatory bowel disease when in remission and increases during aggravated periods (flare-ups).
The cause of fatigue can depend on various factors: iron deficiency (anaemia) or other nutritional deficiencies, mood disorders (anxiety and depression), unrefreshing sleep, medication, stress, etc. It is generally more frequent in Crohn’s disease than in ulcerative colitis. If biochemical, haematological and endocrine causes can be ruled out, then some strategies that can help recover from fatigue include: brief naps during the day, avoid working nightshifts, practise regular, low-intensity exercise, get refreshing sleep at night, maintain a balanced diet and a good level of hydration.

Faecal incontinence. Faecal incontinence is involuntary or inappropriate leakage of solid or liquid faeces. The emission of gases is associated with anal incontinence. Faecal incontinence can prove to be a significant problem, as it can affect patients’ physical and psychological condition as well as their social lives. Nursing staff, in collaboration with the medical team, play a vital role in helping patients manage and relieve the symptoms of faecal incontinence. These strategies include: information, exercises to strengthen the pelvic floor muscles, behavioural therapy (biofeedback), perianal skin care, bowel retraining, improving faeces consistency through diet and the use of antidiarrhoeal agents, etc.

Pain. Abdominal pain is a common complaint of inflammatory bowel disease and is often the first symptom to appear both at diagnosis and at the start of a new flare-up. Pain may be due to inflammation of the intestinal mucosa, narrowing of the intestinal lumen (stenosis) or the coexistence of other functional digestive symptoms, such as irritable bowel syndrome. Factors external to the intestines, such as joint or dermatological complaints, can also give rise to pain. If there is pain, then its cause must be identified and controlled with the aid of drugs, and attempts made to avert associated side effects.

A balanced diet. The treatment of inflammatory bowel disease does not follow a specific diet and there is no need to exclude any particular food, except in the case of a food intolerance. A balanced and varied diet, such as a Mediterranean diet, is recommended. If necessary, a nutritionist can suggest a diet adapted to the needs of each patient. Patients are only recommended to follow diets adapted by nutritionists under exceptional circumstances, such as the case of nutritional deficiencies, abdominal discomfort (abdominal bloating and pain, diarrhoea, vomiting), intestinal stenosis and during the post-operative period following intestinal surgery.

Physical exercise. Patients with inflammatory bowel disease should take part in regular exercise because it prevents the loss of bone and muscular mass, and therefore decreases the risk of fractures.

Stress. There is no evidence to suggest that stress can cause the disease or trigger a flare-up, but some events which exacerbate the disease have been associated with periods of increased stress. Various causes may be involved and so it is approached differently for each person and occasion. Establishing routines, resting, practising relaxation techniques or yoga, or receiving massages can help combat stress.

Give up smoking. Smoking is detrimental to patients with Crohn’s disease as it is associated with a poorer evolution, an increased need for surgery and a higher recurrence rate following an intestinal resection (reappearance of lesions in the mucosa and/or symptoms). On the other hand, individuals who quit smoking will reduce the risk of these complications to a level comparable with people who have never smoked. Primary healthcare centres have specific teams trained to help patients stop smoking. Therefore it is important that patients get involved in their own healthcare and are aware of the benefits of quitting smoking.

In a personal context, the disease process can affect how you perceive yourself and your self-esteem; it can produce a loss of self-confidence and a feeling that you have little control over your life and the future.

In a family context, some patients may feel they are a burden, or feel guilty, note a lack confidence, or have trouble expressing their emotions and incomprehension or communicating in general.

In a social context, the illness can have an impact on social, workplace and/or romantic relationships. Some people reduce their activities involving social relationships for different reasons; because of the need to go to the bathroom, their body image, a lack of energy and weakness, hospital admissions, treatments, flare-ups, poor control of symptoms, embarrassing situations, feeling different, social rejection, etc.

In a workplace context, some patients can feel they do not perform well enough. The occasional need to take time off work can cause frustration in terms of achieving goals.

Colon cancer. Patients with long-term inflammatory bowel disease have a greater risk of developing colorectal cancer than the general population. Based on the duration of the illness, its extension, family history and other associated diseases, the doctor will advise patients when they should undergo a colonoscopy check-up and the frequency of future examinations.

Osteoporosis. Osteoporosis is a condition that affects the bones. It causes bone fragility and increases the risk of fractures. It can be induced by treatments for inflammatory bowel disease, such as in the case of corticosteroids. General preventative measures are to avoid tobacco/alcohol consumption, eat a calcium and protein-rich diet, and practise regular exercise. Other important preventative measures involve establishing good control over the intestinal inflammation, taking calcium and vitamin D supplements, and limiting the use of corticosteroids.

Infections and vaccination. The majority of the medicines used to manage inflammatory bowel disease are immunosuppressants. These drugs can reduce the body’s immune response and increase, therefore, the risk of infections. It is important for IBD patients to check their vaccination status and update it regularly to prevent infections.

Drug monitoring. Immunosuppressive therapy must be monitored regularly through laboratory tests in order to detect potential complications and to adjust the medication dosage. Immunosuppressants are safe medicines, but they are not exempt from side effects. Hence their use must be monitored with regular laboratory tests to improve their safety profile.

Sun exposure. Akin to the general population, IBD patients should avoid excess exposure to the sun and always apply sunscreen, but this is particularly true for individuals receiving immunosuppressive therapy. These medicines are photosensitive and, although uncommon, they may provoke malignant lesions if the skin is exposed to too much ultraviolet radiation.

Gynaecological check-ups for women. Patients undergoing immunosuppressive therapy may have a greater risk of becoming infected with human papillomavirus, a virus which is in turn associated with a greater risk of developing cervical cancer. For this reason, patients are advised to attend regular gynaecological check-ups and ensure they are vaccinated.

Sexuality. Partner or intimate relationships can be affected by the symptoms of the actual disease (fatigue, abdominal pain, diarrhoea), as a result of emotional distress (insecurity, stress, depression) or due to some of the medicines (corticosteroids, for example, can lead to reduced sexual desire). In more severe cases, rectal surgery can damage pelvic nerves and produce erectile dysfunction in men or lubrication problems and/or painful intercourse (dyspareunia) in women.

Fertility. On the whole, inflammatory bowel disease does not increase a person’s likelihood of infertility with respect to the general population. Nevertheless, infertility may be a potential complication of certain operations used to treat IBD.

Pregnancy. Patients with inflammatory bowel disease, whether male or female, and whether they suffer from Crohn’s disease or ulcerative colitis, generally have the same capacity to bear children (fertility) as the healthy population. The best time to conceive is when the illness is inactive. Inactive periods must have lasted for at least three months before trying to conceive. The risk of complications during pregnancy, and for the foetus, increases if the disease is active, as does the risk of premature birth or miscarriage.

Contraception. It is important to avoid pregnancy if you are being treated with methotrexate (an immunosuppressant) and for the next six months after discontinuing the drug because it can cause foetal malformations (it is teratogenic). All other drugs used to manage IBD do not carry any contraindications for pregnancy.

After the journey. Once there, drink bottled water, eat cooked foods and hydrate well if you suffer a flare-up.