The global and Chinese burden of IBD

The global incidence and prevalence of IBD has increased significantly over the past few decades. In the Western world, the incidence and prevalence of IBD are increasing exponentially, which is known as the Great Acceleration of Onset. The number of patients in Europe, the United States and China has accounted for 0.5% of the world's population. In China, the incidence of inflammatory bowel disease (IBD) in urban areas is 10.04 per 100,000. The incidence rate was 10.79 per 100,000 in males, higher than 9.24 per 100,000 in females. The incidence of IBD in China is between that of newly industrialized countries and Western countries. These data show that the incidence of IBD is on the rise worldwide.

With the implementation of the new "physical-mental-social" health model, healthcare workers are paying more and more attention to patients' mental health and social adaptability. For patients with inflammatory bowel disease (IBD), due to the onset of the disease, they not only suffer significant physical distress, but also have a profound impact on the patient's mental and social abilities due to the severity and length of the disease. As a result, the medical team began to take a multidisciplinary approach, incorporating psychotherapy and social support into the routine treatment plan. Psychotherapy not only helps patients cope with the anxiety, depression and stress that come with illness, but also improves their ability to cope with daily challenges. Social support helps patients rebuild their social networks and enhance their social adaptability by establishing patient support groups, providing disease education and psychological counseling.

In order to understand IBD from multiple perspectives and uphold the concept of "people-oriented", with the consent of the attending physician and the patient, we came to the bedside to talk with an inpatient with a history of ulcerative colitis for 6 years, and learned more about the patient's experience with IBD over the years.

Anonymous Patient
Gender: Male
Condition:IBD
Medical History: 6 years
Age：19
Under our inquiry, this patient, who is under 20, first shared his six-year history of illness.He initially went to a local hospital due to blood in his stool, where he was first diagnosed with hemorrhoids. After further examination, he was confirmed to have ulcerative colitis. There were no family members with IBD, and he had never heard of this disease before his diagnosis; he hadn't received any relevant education during school. Reflecting on his six years of illness, he mentioned that initially, aside from the bloody stool, he didn't have any other discomfort. However, after starting college a year ago, his symptoms worsened, although he found relief after using the restroom.

Next, we learned about his eating habits and lifestyle. He generally has a good diet, eating a variety of fruits and vegetables without being picky. He said that during middle and high school, he ate home-cooked meals and felt healthy. However, since starting to eat at the cafeteria in college, his condition hasn't been well managed, which might be why he ended up hospitalized with worsening symptoms. Regarding his lifestyle, he mentioned that he doesn’t stay up late. Over the years, especially during middle and high school, he often played table tennis for exercise. But since his condition worsened a year ago, leading to anemia, he frequently feels fatigued and can no longer engage in much physical activity.When discussing the biggest impact of his illness, he candidly admitted that it’s more of a psychological burden. Since IBD is a chronic illness that can't be cured and requires ongoing treatment, it makes him feel quite frustrated.

His struggles reflect a key issue in IBD treatment: whether long-term medication might lead to decreased adherence. However, this patient stated that he has been consistent with his medication for years. Initially, he took traditional Chinese medicine for about four to five months, but when he felt it wasn’t controlling his condition, he switched to the Western medication mesalamine.

Recently, due to worsening symptoms, he added biologics and other stronger medications under his doctor’s guidance.He has never considered stopping his medication just because he felt better, which surprised us. He explained that while he could reduce the dosage if he improved, the long-term use of medication inevitably brings a significant financial burden since these drugs aren’t cheap.

Thanks to the national medical insurance policy, patients with chronic diseases can enjoy more comprehensive medical insurance, thus reducing the economic burden and improving the quality of life. Through regular medical examination, drug treatment and necessary rehabilitation services, patients can effectively control the condition, reduce the occurrence of complications, and enjoy a more healthy and stable life.

Anonymous Patient
Gender: female
Condition：Crohn's Disease
Medical History: 8 years
Age：32
In the days when she was quietly attacked by Crohn's disease, life seemed to be shrouded by an invisible haze. At first, everything seemed so normal, until the uninvited symptoms began to appear, like uninvited guests, quietly changed the pace of her life.

At first, she often felt a dull pain in her abdomen, an indescribable discomfort, sometimes sharp as a needle, sometimes heavy on her chest, which was hard to ignore. The pain is irregular, sometimes aggravated after meals, and sometimes most pronounced when she wakes up late at night, making it difficult for her to sleep.Over time, she began to notice a significant change in her bowel habits.

Diarrhea became common, sometimes several times a day, the excrement was often watery or mucous, and even occasionally blood, which made her feel frightened and helpless. On the contrary, sometimes she will get into constipation, her abdomen is full, but it is difficult to discharge anything, the pain is also unbearable.In addition to her digestive problems, she often felt tired, as if her body were hollowed out. Even the simplest daily activities, such as walking or doing housework, can leave her breathless and overwhelmed. This constant sense of fatigue made her lose her former vitality and enthusiasm, full of powerlessness to life.

She noticed that her weight had fluctuated inadvertently. Sometimes it drops quickly because of diarrhea, and sometimes it is difficult to maintain because of poor appetite. This unstable weight change made her even more anxious and worried that her health was deteriorating.More worrying, Crohn's disease could also affect other parts of her body. Sometimes she feels joint pain or abnormal skin symptoms such as erythema and ulcers, which can be systemic manifestations of Crohn's disease. These extra symptoms made her feel tortured, as if her whole body was silently fighting against the disease.

Faced with these sudden symptoms and challenges, she learned to pay more attention to the changes in her body, actively communicate with doctors about treatment plans, and strive to adjust her lifestyle to cope with the challenges of the disease. Although Crohn's disease has brought her endless pain and inconvenience, she believes that as long as she keeps a positive attitude and a firm belief, she will be able to overcome it and find her own health and happiness again.

Anonymous Patient
Gender: female
Condition：Crohn's Disease
Medical History: 2 years
Age：22
She, a 22-year-old girl in her youth, should be as brilliant as the rising sun, however, a sudden ulcerative colitis has covered her world like a haze, and her life trajectory has changed dramatically. This is not only a physical torture, but also a severe test of the heart and social. In the two years since her diagnosis, the relentless disease has not only eroded her health, but also deprived her of much of the supposed happiness and freedom she should have enjoyed. Her body is weaker, and every attack was like a silent battle, forcing her to ask for leave frequently, away from the familiar campus and workplace. This not only slowed her studies and career, and even stood at a standstill, but also gave her career and academic achievements an unprecedented blow.

In social situations, she has become increasingly powerless. When her friends gather together and enjoy a carefree time, she often has to leave early because of sudden abdominal pain or constant fatigue. This helpless choice not only made her miss a lot of precious friendship time, but also made her interact less and less with the people around her, and her social circle gradually narrowed. She began to realize that her health had become one of the important factors limiting her participation in social activities.

In the face of such difficulties, she has felt anxious and depressed for countless times. She was afraid that her illness would bring inconvenience and burden to the people around her, and more worried that she would be isolated and excluded. However, it is these difficulties and challenges that have inspired her inner tenacity and unyielding. She did not choose to sink and give up, but bravely stood up and decided to use their own strength to change the status quo.

She began to manage her health status more strictly, actively sought medical help, and constantly tried various treatments and rehabilitation methods. At the same time, she also tried to adjust her lifestyle and mentality to better adapt to the changes brought about by her condition. She learned to ensure adequate rest and nutrition intake; she kept exercise, enhance physical fitness and immunity; she also read, travel and other ways to enrich her spiritual world and find the fun and meaning of life.

In this process, she gradually found that although the illness had brought a lot of inconvenience and trouble to her life, she did not lose the ability and right to pursue her dreams and goals. On the contrary, it is these challenges that make her cherish every opportunity and every harvest more, and make her more firmly walk on the road of pursuing self-value. She uses her own actions to explain what it is really strong and brave, and also inspires more people to be in trouble like her to move forward bravely with her own stories.

Reasonable medication and good medication habits are very important for patients, and we should enhance patients' awareness of medication. IBD patients need long-term medication, but the price of drugs is a lot of financial pressure for many ordinary families, which prompts us to focus on how to reduce the cost of drugs to benefit people's livelihood when developing our projects. In addition, even though the patient believes that the biggest problem caused by IBD is psychological, he still has a neutral attitude towards strengthening psychological care and psychological counseling, so we feel the importance of changing the patient's thinking and actively promoting psychological counseling. Finally, patients expect to develop better new drugs, and controlling the condition of IBD is the main demand of patients, we will continue to walk, listen to patients' voices, and constantly improve the project, hoping to use our project to help human health perfection.

In addition to usual care, patients should receive lifestyle guidance, including dietary modifications, regular exercise, and stress reduction techniques. With a combination of diet, lifestyle and medical treatments, patients can better manage their condition and improve their quality of life. Regular health check-ups and timely adjustment of treatment plans are also important measures to ensure efficacy. Only by working together can patients usher in a healthier and better future.

Patients with IBD are susceptible to micronutrient deficiencies due to intestinal loss due to diarrhoea and anorexia due to concomitant disease activity. Multivitamin and micronutrient supplements should also be provided in addition to nutritional support to ensure an appropriate and balanced nutritional intake. In view of the intestinal problems caused by inflammatory bowel disease (IBD), medical professionals should provide patients with customized dietary guidance to help them develop a diet plan that is appropriate for their condition, with the aim of reducing the irritation of food to the intestines and relieving the associated symptoms. When developing a personalized diet plan, doctors and dietitians should first assess the severity of the patient's condition, the extent of intestinal damage, and the individual's tolerance to different foods.

Eat a balanced diet: Eat less sugary, fatty, and overly processed foods while ensuring adequate energy supply, as they may worsen inflammation. China's staple food is mainly cereals, and it is necessary to eat easily digestible staple foods, and the intake of moderate protein can better meet the needs of the body, but pay attention to choosing easily digestible protein sources. At the same time, high-quality protein should be preferred.

Dietary fiber intake: Eating fresh vegetables and fruits and consuming an appropriate amount of dietary fiber can help promote intestinal peristalsis. For those with Crohn's disease, high-fiber foods may need to be avoided because they may exacerbate intestinal obstruction or pain. Therefore, it is necessary to pay attention to the gradual increase of fiber intake to avoid aggravating the burden on the intestines.

Dietary fats: Cumulative energy-regulated intake of total fat, saturated fat, unsaturated fat, n-6 and n-3 polyunsaturated fatty acids (PUFAs) is not associated with CD or UC risk. Increased intake of long-chain n-3 PUFAs was associated with a trend toward a reduced risk of UC; In contrast, long-term high intake of trans-unsaturated fatty acids is associated with a trend towards an increased incidence of UC. Linoleic acid intake was associated with an increased risk of UC, but not with other dietary fatty acids studied.

Food choices: Choose light, easy-to-digest foods such as white rice porridge, cooked vegetables, etc., to reduce the burden on the intestines. Avoid irritating foods and try to avoid spicy, cold, greasy, etc., as they may irritate the intestines and cause symptoms to worsen.

Bischoff SC, Escher J, Hébuterne X, et al. Guía ESPEN: Nutrición clínica en la enfermedad inflamatoria intestinal [ESPEN guideline: Clinical nutrition in inflammatory bowel disease]. Nutr Hosp. 2022;39(3):678-703. doi:10.20960/nh.03857

Patients with inflammatory bowel disease (IBD) are highly recommended to engage in regular physical activity to enhance their physical fitness and overall health. By engaging in regular physical activity, people with IBD not only improve muscle strength and endurance, but also promote cardiovascular health and reduce inflammation, which can help alleviate symptoms of the disease. In addition, proper exercise can help patients reduce stress, improve mental health, and improve quality of life. Therefore, doctors and health professionals often recommend that IBD patients develop an exercise plan that works for them to ensure that they can continue to benefit from physical activity.

Moderate exercise: According to the individual's physical condition and health needs, choose the exercise method that suits you, such as easy walking, soothing swimming, gentle yoga, etc., these exercise methods can help us maintain our physical health without causing excessive burden on the body.

Avoid strenuous exercise: Try to avoid strenuous exercise and high-intensity training, as these exercises may aggravate the condition and cause unnecessary harm to the body. Especially for some people with specific medical conditions, strenuous exercise may trigger more serious health problems.

Pay attention to your body reactions: During exercise, be sure to pay close attention to your body reactions, such as whether you have symptoms such as pain and fatigue. If you feel unwell during exercise, you should stop exercising immediately to avoid further damage to your body.

Warm-up and cool-down: Before the exercise begins, be sure to warm up well enough to allow the body to gradually adjust to the upcoming exercise. Similarly, after exercising, it is also necessary to perform proper relaxation to help the body return to its normal state and avoid muscle tension and pain.

Avoid exercise-induced stress: Try to avoid stress reactions during exercise, as stress may worsen symptoms of some conditions, such as inflammatory bowel disease (IBD). Keeping a relaxed mindset and choosing an exercise style that suits your physical condition can help avoid stress.

Regular assessment: Regularly assess your physical condition and check the effectiveness of your exercise plan so that you can adjust the exercise mode and intensity in time. This ensures that exercise is good for the body while avoiding health problems caused by improper exercise.

People with IBD often face tremendous psychological stress, and they may experience depression and anxiety due to the recurrent and unpredictable nature of the disease. As nurses, we need to provide adequate psychological support to our patients to help them adjust their mindset and maintain a positive attitude towards life. This includes establishing a good communication relationship with patients, patiently listening to their feelings and concerns, and providing appropriate psychological intervention and counseling in a timely manner.

Establish a positive mindset: To better cope with the disease, patients are encouraged to maintain a positive mindset and believe in their ability to overcome the difficulties ahead. Through positive autosuggestion and positive thinking, patients can strengthen their inner beliefs and thus better face the treatment and recovery process.

Emotional expression: Patients should learn to express their emotions appropriately rather than suppressing negative emotions. By communicating with friends and family or seeking professional help, patients can find suitable ways to release their inner stress and thus maintain their mental health.

Routine: Maintaining a regular routine is essential for maintaining good physical and mental health. Regular diet, sleep, and exercise habits can help patients better cope with the challenges posed by illness and improve their quality of life.

Counseling: When patients feel too stressed, it is a wise choice to seek the help of a professional counselor. Through psychoeducation and psychotherapy, patients can learn skills to cope with stress, relieve psychological stress, and better cope with the disease.

Social support: Communicating with family, friends, and patients to share their feelings and experiences can provide valuable support and encouragement. This social support is not only able to provide emotional comfort, but also helps patients feel less alone in the face of illness.

Participate in interest groups: Actively participating in activities or interest groups that interest you can help divert the patient's attention and reduce anxiety and depression. By sharing hobbies with like-minded people, patients can find joy in life and better cope with illness.

In conclusion, the treatment of inflammatory bowel disease has shifted from a single drug treatment to a comprehensive mind-body and social integrated treatment model. With the advancement of medical technology, biologics and targeted therapy have also shown great potential in the treatment of inflammatory bowel disease. These new therapies can improve patients' quality of life by providing more precise control of inflammation and reducing the recurrence rate of the disease. However, the high cost and potential side effects of these therapies also place a financial and psychological burden on patients. Therefore, when recommending these treatment options, healthcare workers need to consider the patient's financial situation and psychological affordability. Through the close cooperation of multidisciplinary teams, we provide comprehensive care and support to patients to help them better cope with the challenges of the disease and improve their quality of life. In the future, with the deepening of research and the development of technology, we have reason to believe that patients with inflammatory bowel disease will receive more personalized and effective treatment options.