Living with Inflammatory Bowel Disease
One of the most important things that patients with colitis or Crohn’s disease need to do is learn about the disease and get involved in their own care.
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.
What does treatment adherence mean?
Adherence to treatment refers to the patient's commitment to follow the recommendations for treatment and / or healthy habits, such as smoking cessation, especially in Crohn's disease.
In the case of chronic diseases it is essential to ensure the follow-up treatments because nonadherence not only influences the therapeutic failure, but it affects the appearance of complications and increased costs.
Healthcare professionals contribute by diffusing knowledge and understanding of the disease; this helps patients develop a more active role in their own healthcare.
What external factors may aggravate the disease?
Smoking is a detrimental factor associated with a greater risk of developing Crohn’s disease and the habit has a negative impact on the condition’s evolution.
Non-steroidal anti-inflammatories (NSAIDs) are not strictly contraindicated, particularly for short periods and at low doses, but it is important to take into account that 20–25% of patients are sensitive to these medicines and can suffer flare-ups associated with their use.
Gastroenteritis can trigger the onset of the disease and the appearance of a flare-up.
What should I do if the disease intensifies?
If you notice symptoms that indicate a potential flare-up and which last for more than 24 hours, then you should contact your healthcare team as soon as possible to receive appropriate, early treatment and medical advice.
The symptoms of a flare-up are:
Moderate/intense abdominal pain
Diarrhoea that cannot be controlled with normal treatment
Blood in stools
Weight loss and fatigue
Nausea and vomiting
Once the flare-up has been confirmed, and depending on the type of disease, area affected and severity of the lesions, the nursing staff, in collaboration with the doctor, may tell you to follow some instructions with respect to modifying the dose, adding a new treatment or organising additional examinations and/or appointments.
Living with the disease
Living with inflammatory bowel disease can be a challenge, but with support and by adapting your lifestyle to the condition you can overcome the acute symptoms that appear during flare-ups.
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.
Healthy lifestyle habits
Living with ulcerative colitis or Crohn’s disease means you have to adapt your daily life to the condition (so long as these adjustments are healthy), without necessarily resorting to major lifestyle changes.
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.
Diet is not the cause of inflammatory bowel disease, nor is it involved in the appearance of new flare-ups, but certain foods can worsen flare-up symptoms. Some general recommendations for people with ulcerative colitis or Crohn’s disease in the active stage of the condition, i.e., during a flare-up, are:
- Eat small portions, but regularly. Smaller portions reduce the load on the digestive system and are easier to digest.
- Reduce your fat intake. Fat can increase intestinal movement (peristalsis) and thus the amount of cramps.
- Reduce your simple sugar intake. Simple sugars can cause non-inflammatory diarrhoea or increase the likelihood of its appearance
- In patients with lactose intolerance, the consumption of dairy products can cause abdominal pain, diarrhoea, nausea, flatulence and a bloated feeling.
- Avoid eating foods with preservatives and pre-cooked convenience foods.
- Avoid potentially irritating foods such as highly seasoned meals or coffee.
- Avoid artificial sweeteners (particularly sorbitol) as they can induce or increase the likelihood of diarrhoea.
- Limit your intake of foods with a high fibre content. One option to avoid eliminating these foods from your diet completely is to cook them before eating them as they are easier to digest.
- Avoid foods that may produce gases such as beans, cabbage, broccoli, caffeine and carbonated drinks.
- Avoid eating either very hot or very cold foods.
- If a particular food causes problems, tell the healthcare team before eliminating it permanently from your diet.
- In some cases you may need to take additional nutritional support in the form of vitamin or mineral supplements.
Psychosocial impact of inflammatory bowel disease
The diagnosis of a chronic disease has a psychological impact on patients, and also affects their family and social environments. Additionally, this new situation can entail changes in their daily lives which require an adaptation process.
The disease can affect patients to a greater or lesser extent and impact on different areas of their life:
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.
Patients can feel constrained by the disease and in some cases may require psychological support from a professional in order to cope with these situations and improve their quality of life.
Health check-ups and preventative measures
Patients with long-term inflammatory bowel disease have a greater risk of developing other illnesses, for example colon cancer. It is therefore important to follow preventative recommendations and attend all health check-ups scheduled by the medical team.
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, fertility and pregnancy
It is only natural to worry about the impact inflammatory bowel disease may have on personal and sexual relationships. But in the same way as the symptoms of the disease can be controlled, its effect on sexual desire and activity can also be managed.
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.
Travelling with Inflammatory Bowel Disease
Having inflammatory bowel disease should not represent an impediment to travelling; patients just need to take into account factors related to the actual disease and the destination (vaccination, climate, diet, availability of medicines, exposure to endemic diseases, etc.) which could imply a greater risk.
Inflammatory bowel disease travel advice
Inform the healthcare team. It is important to tell them your destination, trip duration and date a few months in advance. The corresponding specialist can assess the need to prescribe any vaccines or a specific prophylactic treatment, or determine if any tests are required.
Vaccination. Vaccination regulations established by the destination country may not be compatible with medications taken for inflammatory bowel disease, especially for the case of immunosuppressive therapies.
Report. Take with you a report from the healthcare team that defines your illness and the medication you are taking. Also carry an updated copy of your vaccination booklet.
Safety. You are advised to travel with documents or a health insurance card that certifies you are entitled to receive healthcare services.
Find out which hospitals are assigned to you in the destination country. Experts also recommend that you should learn about the treatment options and whether the healthcare service can guarantee quality and safety. You should also have a good idea about how you will deal with a potential flare-up.
Bottled water and cooked foods. Once there, drink bottled water, eat cooked foods and hydrate well if you suffer a flare-up.
After the journey. Once there, drink bottled water, eat cooked foods and hydrate well if you suffer a flare-up.
A social support system may be beneficial for patients with inflammatory bowel disease as it allows them to meet people who have the same disease and share common life experiences.
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