Abstract
People living with chronic inflammatory bowel disease (IBD) experienced that knowledge about their embodied tolerance limits, diet, mental problem solving, and change in lifestyle together with integrative health care could promote recovery from their diagnosed disease in calmer periods of suffering. A hermeneutic approach was used to analyze interviews with patients living with IBD outside hospitals. Thirteen young adults between 18 and 45 years of age in calmer phases of IBD participated in the study. Three main themes emerged from the analysis of the interviews: (1) Understanding limits in embodied tolerance, (2) Restoring balance is creating a new equilibrium, and (3) Creating resilience through integrative care. Anxiety, depression, stress, insomnia, and fatigue are known consequences of IBD and create a lower degree of well-being for the patients. The digestive system is very important in establishing the interface between the body and the external world. Properly functioning digestion, psychosocial stress reduction, and sleep quality are important to rebuild a balanced immune system. Stress resilience during a patient's recovery from IBD requires self-understanding, self-recognition, and psychosocial support from health care professionals at hospital outpatient clinics.
Keywords: hermeneutics, inflammatory bowel disease, integrative, recovery, stress resilience, tolerance limits
There is an emerging recognition of the importance of stress alleviation and psychological health in symptom experience and treatment needs in inflammatory bowel disease (IBD).1 The natural history of IBD as a chronic intermittent disease and the psychophysiological vulnerability in the patient is still poorly understood.2–4 The digestive system is very important in establishing the interface between the body and the external world.5 Because IBD has become a lifestyle and a global disease in both developed and developing countries, there is a need to reconcile the most appropriate care and treatment for the patients.6,7
The Inflammatory Bowel South-Eastern Norway study group has published epidemiological results of a 20-year follow-up in IBD showing patterns of disease development.8–10 The patient group with Crohn disease (CD) scores significantly lower on the general health and vitality dimensions after 10-year follow-up.11 The use of complementary and alternative medicine (CAM) was common among IBD patients attending outpatient clinics in Norway.12 Patients with IBD found it easier to communicate about CAM with the IBD nurses than with physicians, and dietary change was one important CAM treatment.13
Patients with CD and short disease duration have lower health-related quality of life than patients with ulcerative colitis (UC) and they are in need of support and education.14 Therefore, health promotion is an important goal in the treatment and care of IBD patients. Research shows that attentiveness to the physical and psychosocial tolerance limits can increase the body's tolerance level, alleviate inflammations, and improve well-being and level of health.2,15–17 To improve research quality studies in IBD, it is important to include disease remission, clinical improvement, and reduction of psychosocial stress as primary health and well-being outcomes.18–20
The real task of both the physician and the specialist nurse in gastroenterology is to assist in the process of restoration and recovery of health, in both physical and psychosocial recovery of IBD. This article intends to contribute to the development of an integrative health care curriculum in health promotion sciences.
The main purpose of this study was to examine patients' experiences with psychosocial stress with IBD, and how they try to achieve better health and wellness. The study has the following research questions:
Which experiences have do patients with tolerance limits for psychosocial stress and how are these handled in the process of recovery from IBD?
What does it mean to restore balance in patients with IBD?
What are the patients' experiences in integrative care?
THEORETICAL FRAMEWORK
We have chosen a framework where health is central.21,22 Health comprises an integrated state of healthiness, vigor, and well-being. The verb “to integrate” means an event or experience that results in integration. Integration derives from Latin “integer,” which means to tie together into a whole.21 An integrated interaction between body and soul generates a conscious awareness, and a conscious person has contact with himself or herself.21 Being “self-aware” involves a conscious awareness of one's own life situation and one's own abilities and limitations. The cycle of breathing, digesting, and sleeping through 24 hours is a rhythmic phenomenon that helps the body produce vitality, refreshment, and restoration of energy. What is the hidden balance we seek to recover? Gadamer22 says that we ourselves are part of nature and it is this nature within us, together with the self-sustaining organic defense system of our bodies, which is capable of sustaining our “inner” equilibrium. This unique interplay of functions constitutes life. We can only oppose nature through being part of nature ourselves and through being sustained by nature.
Gadamer22 poses the question as to whether we are creating an artificial human environment through our modern time. Gadamer states that the social role of individuals moves into the foreground more than their self-understanding. The art of healing is its ability to re-produce and reestablish something. It involves the restoration of the health of the sick person. Healing as a whole involves taking part in what already exists and following the process of nature and seeking to restore this process when it is disturbed. It is also necessary to do so in such a way that the art can allow itself to disappear once the natural equilibrium of health has returned. Equilibrium of health means natural health in balance or restored balance.22
Gadamer22 observes that well-being appears to be intimately related to the wholeness of being. He considers how far health is from a measurable product; health is really what is experienced when illness is not present or goes away. Health manifests itself by escaping our attention. He further states that if we want to resolve the enigma of health, it seems that our own embodiment and our living body are crucial concepts to include in our understanding in qualitative science. As ancient Greek physicians had observed, “the body cannot be treated without at the same time treating the soul.”22(p73) The “soul” does not represent just one particular domain among others but rather reflects the totality of the embodied existence of the human being.
METHODOLOGY
Design
The approach was hermeneutic. This approach was used to contribute toward interpreting phenomena from the perspective of the persons who are enrolled in the study. The term “understanding” is fundamental in hermeneutics. Interpretations that lead to understanding are not necessarily correct, but they may be reasonable interpretations.23 A basic tenet of hermeneutics is that one must regard each individual as unique, and we therefore found this design valuable in studying patients' experiences and health practices with IBD.
Setting and participants
Fourteen interviewees were recruited from the patient organization National Association Against Digestive Diseases (LMF) following an invitation letter from the researchers on the LMF's Web page. The interviews were conducted at the university campus at the researcher's office. Before the interview started, important information about demographic data and health status was collected and the participants gave written consent for this and for taking part in the study (Table 1). The main interview lasted between 1 and 1½ hours. The participants resided in their home environment and did not have an acute need for health care. The following criteria were used for selecting patients for participation: The participants were between the ages of 18 and 45 years, were of both genders, had various functional levels linked with CD and UC, and had different experiences with diet and stress. Thirteen young adults with IBD were included in the study—3 men and 10 women. The participants were interviewed over a period of 6 months. One informant withdrew from the project because of a worsening of the disease.
TABLE 1. Demographic Characteristics of the Study Sample.
Characteristic | Patient Sample (n = 13) |
---|---|
Age, y | 2:18-25; 6: 26-30; 3:31-40; 2: 41-45; |
Mean (range) | 32 y |
Gender | 10: women; 3: men |
Educational level | 5: master's degree; 5: bachelor's degree; 3: upper secondary school |
Civil status | 7: married/cohabitant; 6: single |
Employment | 8: full time; 1: unemployed/disabled; 4: other (part-time, student) |
Region | 10: Central region; 1: South region; 1: West region; 1: Middle/North region |
Type of IBD | 7: Crohn disease; 6: ulcerative colitis |
Treatment | 13: use or used IBD medication, allopathic; 10: use of vitamins, minerals, probiotic, fatty acids: 12: use of diet |
Disease development | 10a: (a) reduction of serious symptoms; 2: (b) increase of serious symptoms in periods; 1: (c) constant chronic symptoms; 4a: (d) chronic symptoms in periods |
IBD among relatives | 4 |
Disease duration | 3: 1-2 y: 5: 3-4 y; 4: 5-8 y; 1: 12 y |
Hospitalized in past 5 y | 11: yes; 2: no |
Surgery in last 2 y | 1: yes; 12: no |
Functional ability | 3: very good; 9: good; 1: bad |
Body weight last 5 y | 1: increased; 3: stable; 5: unstable; 4: decreased |
Abbreviation: IBD, inflammatory bowel disease.
aDisease development both symptom a and d.
The assessment of disease development is based on the Inflammatory Bowel South-Eastern Norway study in the area of IBD and CD.8,9 All participants were diagnosed at hospitals; 11 of the patients were treated in hospital at gastroenterological units or in adjoining policlinic units. Their local medical practitioner followed up 12 patients and 1 patient had turned to health care in the private sector.
Method of data sampling
Research interviews were used as the source of information. These are understood as being interactional, reciprocal, and reflective processes.24 In the interview situation, the informants were asked to reflect on their experiences with the disease. For reflection to take place, both parties have a shared interest in developing the content of the experiences pertaining to the disease as well as the significance of well-being. The researcher turns to the real world to understand experiences on its own premises rather than accepting the meaning as face value.24 The role of the interviewer has been to encourage the informant to reflect and not to consider anything as self-evident.24 The interview of the informants followed an interview guide with open questions from the basis of the study of the literature. Examples of questions that were asked during the interview are as follows: What experiences do you have with your body's tolerance limits for psychosocial stress? When and in what situations do you experience increased well-being in your own body? What do important relations mean for you in the development of your self-understanding? Do you have any experience with complementary forms of treatment?
To gain knowledge on how it is to live with and recover from IBD requires an approach to enabling one to deal with the experiences without reducing them and thereby losing important content. Through reflection, an opportunity is created for distancing oneself, thereby increasing openness and sensitivity to the participants in various facets. In this study, the data saturated after interviewing 10 people and the last 3 informants confirmed this.
Method of analysis and interpretation
The interviews were tape-recorded and then transcribed by a professional transcriber. Thereafter both researchers read the written material. The material was interpreted according to Brinkmann and Kvale's24 3 levels of analysis: self-understanding, critical common-sense understanding, and theoretical understanding. The interviews were read several times to get a sense of the whole. The natural meaning units were determined. The researcher used “memos” after underlining the participants' experiences with IBD in the text. On the level of self-understanding, the meanings of long interview statements were reduced in natural units. At the critical common-sense level, data were interpreted within a broader framework of understanding than the patient's own. Concerning the first 2 levels, data were repeatedly read and interpreted with an emphasis on emerging common themes within the patient's experiences. By constantly comparing the text with a focus on similarities and differences, the content of the themes became clearer. The researchers agreed upon the themes through discussion. Three main themes emerged from the transcribed interviews. The 3 main themes were interpreted at the third level of analysis—theoretical understanding, employing the theoretical framework, and consulting the existing research literature in the field.
The use of quotations presents a natural unit in development of a theme. An example is as follows:
What makes me better or worse is the physical state and how I cope with stress. Before I began the diet, I was depressed every other day. Now I am less frequently depressed. If I have slept poorly or have had a reaction to food so that I am more fatigued, the negative thoughts more easily come back to me. So I try to work around stress, try not to put myself in difficult situations or try to avoid difficult situations.
The informant explained that she moved to a quieter place to work as a teacher. From this natural unit, mental problem-solving is developed as theme. At this critical level, common-sense understanding emerges through the “researcher voice” in the interpretation into the theme “mental problem solving creates well-being.” Then this theme was placed within the main theme: The recovery of equilibrium in health. Example of common sense and theoretical understanding is the following: “The informants need to strengthen their self-understanding in order to create self-recognition. Self-understanding is the basis for being able to reproduce or reestablish a natural, balanced state of health.” The analysis level of theoretical understanding used current health theory from Eriksson21 and Gadamer22 in understanding the enigma of health as a framework for interpretation. This last phase in the analysis process led to some minor changes in theme identification.
Ethical considerations
The study was approved by the Norwegian Regional Committee for Medical and Health Research Ethics South-East (reference number S-08085a) and with advice concerning the handling of personal information from the Norwegian Social Science Data Services. The participants were given written information about the study, including assurances of confidentiality, and the right to withdraw from the study at any time without giving a reason. Written consent was obtained from participants.
RESULTS
The results are presented in the following main themes: (1) understanding embodied tolerance limits, (2) restoring balance is creating a new equilibrium, and (3) creating resilience through integrative care.
Understanding embodied tolerance limits
The informants explained what they took into account when listening to their own physical tolerance limits on the path to recovery. They cited experiences with bodily tolerance limits for physical activity and psychological stress.
Learning limits in embodied tolerance for physical activity and psychosocial stress
Several informants with IBD have studied and had a full-time job at the same time. Finding themselves in situations that caused stress was something they felt in their stomachs. They usually had a poorer diet and irregular mealtimes, along with a small amount of physical activity. Gradually, they became concerned with things that “triggered” a worsening of their suffering.
If they pushed themselves too hard physically, or if they felt that their body was fatigued, very little was needed to trigger a worsening of their suffering. In periods of illness, too much physical activity might trigger episodes of diarrhea. Two informants said:
Physical activity is alright up to a certain limit. Then I begin to feel growing symptoms in my stomach.
I am often fatigued on a daily basis. Currently I can only manage physical exercise twice a week walking and bicycle riding. It is very important for me, both psychologically and in terms of my body.
The body's reactions determine the limits. That's why it is important to learn to listen to one's body. The tolerance limits for activity might be reflected, for example, in lack of energy, reactions in the stomach, muscle fatigue, or other complaints. Through experientially adapted physical activity, the informants gained better control over their stomachs.
Illness of close family members, conflicts, and people taking unfair advantage of close social relationships were sources that created too much stress. One informant said:
The combination of a sick parent and problems between us was enough to make me ill. I was not admitted to hospital, but I had to contact the emergency room to get medication.
Illness and context mutually affect one another. The psychosocial environment surrounding a person living with an illness is an important factor in relation to how strongly the person suffers. Depression triggered worsened illness in several of the informants, as described by one of them:
This was just before the doctor put me on happy pills. I didn't have the energy to do anything.
I was afraid of everything—I had been a parachutist earlier—It felt like all the fuses in my body were totally burned out.
Lack of energy and development of fear of something one could do earlier resulted in a feeling of dejection. Tolerance limits are learned through repeated experiences of the body's reactions. The feeling of not having energy enough to cope with what one could do earlier has psychological consequences.
The informants felt that the disease put a stop to their activities, and some managed to channel their frustration and anger into physical activities:
I enrolled in a self-defense course and boxing-aerobics, where I could really get it all out.
I think that worked, actually. Physical activity is important to me today.
Others emphasized the importance of friends after they became ill:
These are friends that sort of “pushed me.” They have helped to find solutions when I had to go to the toilet so often. So in that way, I gradually came back.
By finding a balance between physical activity, thinking through one's situation and ensuring that they got enough rest, they regained energy, their stomachs functioned better, and their digestive systems worked more smoothly. The body's inherent tolerance limits react to both inner and outer stress factors, and the informants learn to recognize these by being attentive to the reactions of their bodies.
Establishment of a regular rhythm between activity and rest promotes dynamic tolerance limits
The informants explained how important it is not to push the body too far and to set aside enough time for necessary relaxation and sleep to increase their level of energy. Regular daily movement of the body is very important. If several days passed during which they had less physical movement, they felt it in their bodies through increased symptoms, a stomach ache and aches in joints and muscles. One informant said:
After I fell ill, I started to go to bed earlier when I was tired and lacked energy.
It has been important for me to go to work. I exercise doing yoga twice a week.
It was important to get enough sleep and have regular physical activity every day to have more energy. Yoga involves concentration and focus to take control over one's own mental and bodily life. Several informants emphasized that eating after physical activity was important so as not to run out of energy, particularly when they increased the level of activity during periods when they were feeling better:
My experience with CD and what I tell others is that if you are in a healthy period, then you should begin to have physical activity. When your body is strong, it helps you a lot in periods when you are feeling ill, too.
The informants brought food along to eat during breaks or after physical activity. Having regular mealtimes, activity, training, and rest throughout the day prevented relapses and develops dynamic tolerance limits enabling the person to withstand more.
Restoring balance is creating a new equilibrium
A living body represents the life, which was experienced as a constant movement between the loss of equilibrium and the search for a new point of stability.
Realizing the importance of mental problem-solving in well-being
Informants with CD were familiar with anxiety and depression. One informant stated:
I was very depressed before I was diagnosed. The psychiatrist I went to was open for dietary therapy. She thought that diet is able to do a lot for depression. This took much more time, and she recommended that I take medication. I was against taking antidepressants. It took time to build myself up again after being sick for seven years.
The patient was listened to, was shown openness, and was allowed to make her own choice. Through this and with her doctor's help, she found the strength to build herself up again. One respondent said:
I tried to think positive, tried to be focused on finding solutions the entire time. I have worked on this for ten years with my family. I have discovered that we mentally make very many decisions ourselves.
To put forth good solutions for oneself, try them out, and share them with significant persons in one's life help develop self-understanding and self-determination. It is a global unity in which they strengthen themselves in important bodily areas and in which they cope with depression by thinking positive and by focusing on potential solutions, thereby establishing mental well-being.
Two informants got help from a healer or from meditation/thought field therapy. In this context, the art of healing means performing tasks in restoration of something natural. The informant stated:
When I started seeing the healer, I had daily pain and I was emaciated. After two months, everything was much better and I noticed a difference. The healer set me on the right path by suggesting, among other things, that I change job. I have learned a lot about attitude.
Taking the lead in situations where conflicts arise can help stomach problems. Getting into conflict situations could often be too much, and they got sicker from it. The informants transformed a poor conscience into a better ability to set their own limits and to clearly make their feelings known. The informants thereby change their self-understanding, are more active in problem solving, and experience increased well-being as individual persons.
Self-recognition is the basis for change
Changing one's lifestyle was a question of making changes in one's daily life. To do this, the informant's motivation was crucial. One key informant stated:
My family physician managed to get me to really start believing, to start making an effort to accept and take on the important task of changing my food habits. So he has been very supportive in getting me to say goodbye to pizza and instant soup mix.
One respondent stated:
I have to avoid the temptation to eat for comfort. It is a fact that my body has gone through sugar withdrawal. I find myself more healthy, more fit and better prepared to cope with stressful situations and depression. Today my intestinal infection means nothing in terms of my job, but it means something if I eat the wrong food.
The informants make fundamental choices in relation to a change of diet, go through a period of withdrawal, and become more critical to what they put into their bodies. This increased their general resistance over time, and they gained the inner mental strength necessary to make the correct decisions.
The informants required peace and concentration to be able to note and convey what they feel in their bodies. Their intellect then processes the thoughts that link up with their bodily experience. The signals and symptoms need to be interpreted and are the source of knowledge for testing, acting, and gaining insight.
Inflammatory bowel disease seems closely linked to experiences involving stress. Experiences with stress differed. Positive stress created energy, desire, and will power. Negative stress led to lack of energy, exhaustion, and stomach aches. For periods of time, imbalance occurs and they need to recuperate; with rest until equilibrium in the body is restored. Self-understanding facilitates the foundation for creating a new equilibrium in which one's state of health is more in balance.
Creating resilience through integrative care
Integrative care means an expanded health and treatment perspective that encompasses several therapeutic approaches capable of developing the tool chest of caring and treatment techniques for IBD in remission. The informants highlighted complementary and integrative treatment, and they shared their experiences within the following areas.
Use of dietary supplements—vitamins, minerals, and fatty acids
This is an area in which the informant group uses doctors' prescriptions and advice from professional therapists in CAM. The informants get their food supplements from the pharmacy and the health food stores. Dietary supplements are currently an important complement to traditional medical treatment. Folic acid, iron, multivitamins, vitamin D, calcium, and magnesium are used if treatment includes the medication prednisone or cytotoxin.
Several informants use omega 3 and/or seal oil that contains essential fatty acids, and this helps “lubricate the stomach/bowel system while at the same time it hinders inflammation.” One informant said:
The primary ingredient in the supplements I was supposed to take was omega 3. Currently I am taking seal oil because it works better. When I feel a stiffness in my muscles or joints, I increase the dosage. Then I am fine the next day. I have used probiotics every day for five years.
The informants indicate that both probiotics and omega 3 are helpful if they feel ill. Other dietary supplements used include olive leaf extract and turmeric, both of which are said to be anti-inflammatory.
Integrative methods as individualized treatment
Several of the members of the informant group included integrative treatment in their endeavor to achieve more permanent alleviation from their suffering. They succeeded in doing this to varying degrees, depending on the severity of their illness. Several informants experienced that the public health service was more focused on medication than on supplementary solutions and changes in lifestyle. In a meeting of the patient association, one of them stated:
I feel that very many people give up. I can well understand that, because the health system is absolutely uninterested in alternative solutions and changes in lifestyle. The focus is too much on medication.
The total informant sample was divided roughly into 2 patient groups. Those who had a briefer period of illness or continued to have acutely severe symptoms at intervals were more committed to traditional medical treatment. Those who had longer experience were more open. Through becoming ill, several of them had made significant changes in their lifestyle and felt that their bodies had been strengthened through the use of integrative treatment.
Some used nature therapies. Two informants went to nature therapists for 1 year. They termed this energy treatment, whereby energy fields were tested and attempts were made to build poor energy levels up again. One informant stated:
I was skeptical. One is taught to go to a doctor. On the other hand, it was the nature therapist who helped me most during the period when I was ill. I got well after being very down and out. My spouse reminded me of how far down I had been and of the good recovery I achieved.
The informants themselves paid for the expenses of nature therapy. Some of the informants were able to write off the additional expenses for food on their tax returns in the smaller rural municipalities.
Informants with CD got help in the form of lymph drainage. Lymph drainage is a form of deep massage whereby the therapist uses the power of hands/fingers to affect important points in the body. Bowen therapy is another form of massage using gentle pressure techniques to affect muscles, tendons, and soft tissue. During periods when they were ill, the informants experienced a loss of energy and were helped to rebuild the energy in their bodies.
Some tried acupuncture for various lengths of time. One informant stated:
I have gone to an acupuncturist. When I finally got rid of the inflammation, I found myself unable to return to work because I was so exhausted. The acupuncturist stimulated different energy points with pins inserted in various places on my body. It was very effective for three to four weeks, followed by a new treatment. I soon returned to work and continued treatments for almost a year without having any new absences due to illness.
Several of the informants combined acupuncture and homoeopathy as a treatment programme. One said:
I have tried both acupuncture and homoeopathy. The homoeopath actually said, “we can help to relieve your suffering and we can give you support treatment in the process. Your first treatment is to be given by your own medical doctor.”
Several informants said that they did not want to mix different types of treatment. However, several informants had their own therapists to help prevent a relapse and help them to treat themselves. One informant stated the following:
I go to a professional homoeopath and speak at length with her once a month. She has plenty of experience with diet and nutrition, and this makes me confident that things will go well. I already notice how much better I am psychologically, without using antidepressants. In my experience, it just takes a little longer, but I am getting healthier and I feel much better.
The informants have kept in touch with their family physicians or specialists for follow-up treatment or to get emergency medical assistance when needed. Several of them find that they have higher tolerance in their daily lives; they experience fewer relapses and they are able to withstand more.
DISCUSSION
Something is created through the examination of coincidences in the informants' experiences with IBD and their recovery from illness or relapse. Health is integration, which entails integrating new knowledge about oneself and integrating oneself with the environment.21 Integrative care must principally be seen as supporting whatever helps to restore or sustain balance. Eriksson21 and Gadamer22 together see the essence of the caring and curing as an art in staying in touch with the natural process of equilibrium.
Understanding embodied tolerance limits
One main theme heard among the informants is that one needs to learn one's own tolerance levels for activity and stress. This is a matter of ascertaining what exacerbates symptoms and complaints and what alleviates suffering and promotes well-being. Listening to one's body, reflecting over and interpreting symptoms, and being in dialogue with one's surroundings develop an insight into and understanding of the way to cope with suffering with the use of one's own resources.15,16 There are tolerance limits for activity, for physical environmental toxins, and for psychosocial environmental toxins. The body's reactions determine the limits. Tolerance limits for activity entail not only knowledge about the type of activity and how much one can tolerate before symptoms and complaints are exacerbated; they also entail knowledge of one's body concerning what kind of activity contributes to improved health. Informants say that it is important to physically train the body up to the tolerance limit during good periods. In an early phase, diet counselling and development of an individual diet program are recommended.17 One thereby gains self-control over one's suffering, with regular mealtimes and food that can be tolerated, along with regular physical activity.
Several informants cited problems with depression. Symptoms of anxiety and depression are common with IBD, even in younger patients. There is consistent evidence for a contribution of psychological factors to IBD disease course, especially stress in UC and depressive symptoms in CD.25 Stress can also exacerbate symptoms in CD by lowering pain thresholds in internal organs, thus increasing the sense of it and decreasing mucosal barrier function.25 Researchers in IBD experience that severe long-term psychosocial stress can trigger the appearance of IBD and act as an environmental risk factor. In persons living with IBD, poor relations play a role since tension in the intestines increases and discomforts become worse. Informants mention that promoting good sleep over time, combined with reduced abdominal pain during periods of rest, increases a person's energy to cope with stressful and difficult situations. The psychosocial environment surrounding a person living with an illness is an important factor in relation to how severely the person suffers.26
Knowledge about and awareness of the reactions of one's own body, as well as how to interpret these in dialogue with competent health care personnel, will give the patient a feeling of being confirmed and recognized. This enables one to turn the “mirror” toward oneself and to interpret one's own reactions. At the same time, this is a process of consciousness-raising and acceptance of one's own tolerance limits. The study by Cooper et al27 treats the topic of reconciliation of the self in IBD. A process of reconciliation occurs with what one has gone through in terms of IBD disease and with how the patient establishes renewed inner strength and resolve to live.
Restoring balance is creating a new equilibrium
The informants speak of the importance of finding mental or cognitive ways of solving problems when they suffer from anxiety and depression. Having the opportunity to share this with other significant persons in their lives can trigger a process of change in the patients themselves. Gadamer says: “This element of discussion is vital; dialogue and discussion serve to humanize the relationships between health care professionals and the patient. The hidden character of health manifests itself in a general feeling of wellbeing.”22(p77) Being able to speak out, to be confirmed, enables one to see potential solutions more easily with the aid of important health personnel.
The informants need to strengthen their self-understanding to create self-recognition. We both sense and understand, and our self-understanding is more important than the social role we have as ill persons.22 Self-understanding is the basis for being able to reproduce or reestablish a natural, balanced state of health. Our body may desire something that our will and intellect must consider carefully to determine whether it serves health in the long run. It is important to be the master over one's own body; through moderation and self-control, the soul is strengthened; the body reacts by becoming more energetic, and well-being is promoted. Equilibrium of health means natural health in balance or to restore balance.22 The findings in this study suggest that health personnel must develop new skills for gaining the patients' confidence by including their fundamental experience concerning exacerbation of symptoms and alleviation of them. No illness manifests itself exactly the same way in every individual; certain individuals are constituted by their history of illness. The informants have anecdotes, knowledge, and images of the situation they are in. If we think of health as a state of equilibrium— physical, emotional, and mental, we can try to visualize it by ourselves, to find where the suffering is most severe and then begin there.
Certain illnesses are characterized by certain practices. These are currently established around medical treatment and nursing of IBD patients. This includes tried and tested technology that helps the patient group recover from severe and critical illness. On the contrary, the bodily systems may be subject to inappropriate symptom control for recovery and restored health if the technology overrides the body's natural ability to heal itself.17 To repair damage requires a clinician skillful in both medicine and nursing; interventions should be developed to a greater extent to resemble the body's natural healing processes, particularly in a calmer phase of IBD.
Often psychosomatic condition in IBD has been neglected. Patients with special needs as emotional or mental mood problems may benefit from psychological therapy.3,28 Health and nutrition educators should monitor the psychological well-being of young adults with IBD and incorporate opportunities for them to develop skills and strategies for creative problem solving with their condition. A holistic treatment requires new interventions that permit the entire body to find a new equilibrium.
Integrative care in recovery creates stress resilience
The informants point to emergency medical treatment as life-saving treatment that helps them through a severe biological crisis. However, in calmer periods, they gradually learn more about their own bodies and are able to try out a number of treatment methods under safe conditions. Often simple changes in diet, taking natural supplements, and developing a program for stress relief can make a profound and lasting difference in IBD sufferer's life.29 If a patient is suffering from fatigue, anxiety, and depression, the first thing to be investigated is undernourishment and malnutrition of macro- and micronutrients in his or her diet.17,30 Through interventions to improve nutritional status, there are potentials for alleviating accompanying psychological states such as anxiety, depression, and fatigue through increased energy level and well-being.
Some informants had used both homoeopathy and acupuncture. Acupuncture has traditionally been used in the treatment of IBD in China. Apart from marked placebo effects, traditional acupuncture offers an additional therapeutic benefit in patients with mild to moderately active CD.31 The challenge is to show that acupuncture and homeopathy, as treatment forms, are able to supplement and enrich the treatment regimen for IBD patients. Science cannot say precisely what happens with medicines containing low homeopathic doses. Their beneficial healing effects are preventing “the potential misuse of other, biochemical medications.”22(p107) An improvement in symptoms was significantly associated with homeopathic remedies and diet, and a minority of the patients experienced a worsening of the IBD symptoms with the use of CAM before and after discharge from hospital.32 The use of CAM was common among IBD patients attending outpatient clinics.12
Health care systems based on the pathogenic analysis model are not always equally well suited for finding solutions to lifestyle-related and chronic illnesses.33,34 Modern biomedicine and complementary care can be used together in a new movement called “integrative care,” “integrative health,” or “integrative medicine.”33,35–37 People suffering from chronic health conditions combine conventional medical care with CAM therapies for varying reasons.38 Integrative health care incorporates diet, lifestyle factors, mind-body stress reduction, and evidence-based CAM in conventional health care. The equilibrium can be lost through being forced, through too powerful intervention.22 With tested forms of medical treatment, we can force too much or unnecessary prescription of medicines and do not think through the right moment or the right dosage for such medical intervention. The disturbance of equilibrium can be redressed by either the introduction of a counterforce or similarities as a catalyst.22,39
There is emerging evidence that many of CAM modalities are effective in modulating the immune system, disrupting the proinflammatory cascade, and restoring digestive health while improving patients' quality of life.36 If the immune system has been suppressed by medication, once it is able to overcome the suppression by a positive stimulation as the self-healing actions are, the health as a whole is in better balance.39 Integrative medicine combines both conventional medicine and evidence-based CAM treatment, and this has increased in the Scandinavian countries.12 In natural health methods such as psychosomatic medicine, homoeopathy, and hygiene, the ecological aspects are involved.22 This tends to support the notion that self-perception regarding a healthy lifestyle and stress resilience could be both a product and a precursor of CAM use that, over time, are reciprocally reinforced.40 This will be able to strengthen stress resilience, which is a matter of being integrated in a psychosocial context despite traumas and illness over time.20,40
STUDY STRENGTHS AND LIMITATIONS
The skewed sample with only 3 male informants among the recruited patients may be a limitation. All patients recruited by the staff at LMF were interviewed. The staff invited men in particular on the LMF Web page in the second announcement. Male and female recovery from IBD can differ, especially in terms of daily food preparation. The women seemed to have an advantage in recovering from IBD because of their own knowledge of nutrition. The interview period spanned 6 months. In retrospect, more attention could have been given to procedures for alerting the researcher about eligible patients.
A strength in this study was that the data saturated after interviewing 10 people of 13, and the last 3 informants helped the researcher confirm this. According to Helenius23 and Brinkmann and Kvale,24 when qualitative interviews and observation are the major sources of data collection and analysis, issues of validity and reliability are built into the design. The 2 persons between 41 and 45 years of age had long-standing experiences in diet and lifestyle changes. These key informants helped the researcher see these experiences repeated among the informants.
Trustworthiness in qualitative studies entails revealing human phenomena in the way in which the person experiences them. The quotations presented in this study are intended to ensure this. The quotations are translated into English and we have taken great care to maintain the essence from the informants' experiences.
The movement between the reflective readings of the text in light of research questions is an important step of the scientific building. The research process proceeds in accordance with the hermeneutical circle, where understanding increases step by step in the form of still pictures. The research strategy in the study was to find common features in the informants' thorough experiences in achieving improved health and wellness, while taking into account the hermeneutic creation between the whole and the part and between “empirics” and theory. The advantage of this approach is to expand the horizons of established knowledge with the intention to renew it.
Implications for further research
Qualitative research within integrative care and recovery has the purpose of discovery. In this tradition, curiosity and imagination are necessary traits for the researcher who wishes to contribute with original knowledge. A basis in reality that can ensure relevance in the research issue and interpretational framework is equally necessary.41(p89)
We recommend the implementation of further systematic, qualitative, and quantitative research in which health care guidance and integrative treatment are one part of a holistic treatment regimen, including measurement of patient satisfaction and improvement in general health in patients with IBD.
CONCLUSIONS
To establish self-reflection and self-recognition, the individual needs to earn the confirmation and recognition of others through psychosocial support measures. This creates renewed zest for life and strengthens health to resist inner and outer stress factors. The goal for interventions is to restore the person involved to a higher level of health equilibrium.
Health promotion involves working toward creating support that facilitates adopting or maintaining better health actions. Confidence-building information through one's own reasoned experiences constitutes highly valuable professional expertise for both the patient and the health personnel. The mutual confidence that skillful health personnel develops with patients having IBD disease enables the patient to see opportunities in new treatment initiatives that are emerging through integrative treatment. This reinforces the patient's own self-treatment on the path to a more vital, natural health, which is a new strategy, in addition to medical treatment. A chronic disease such as IBD is not about being “healthy” for good periods and accepting the bad periods, but rather about creating a more comprehensive health and well-being that is long-lasting.
Footnotes
The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article.
The author K.S. has had this research project as a part of her position as associate professor at Oslo and Akershus University College of Applied Sciences, Oslo, Norway. Eckbos Legate has given economical publishing support to this research project.
Author Contribution: K.S. is responsible for the design, the data sampling, and draft of the article. D.N. read the transcribed interviews and has given critical comments during the analyzing and writing process to increase the scientific quality.
Ethical Approval: The article is part of a research project: Development of Nutritional Program for counselling patients with chronic inflammatory bowel disease—IBD at Oslo and Akershus University College of Applied Sciences. The Ethical Committee has been approved this study and Data Protection Agency in Norway.
REFERENCES
- 1.Bernstein CN. Treatment of IBD: where we are and where we are going. Am Gastroenterol. 2015;110(1):114–126. [DOI] [PubMed] [Google Scholar]
- 2.Skrautvol K, Nåden D. Nutritional care in inflammatory bowel disease—a literature review. Scand J Caring Sci. 2011;25(4):818–827. [DOI] [PubMed] [Google Scholar]
- 3.Bonaz BL, Bernstein CN. Brain-gut interactions in inflammatory bowel disease. Gastroenterology. 2013;144(1):36–49. [DOI] [PubMed] [Google Scholar]
- 4.Vatn MH, Sandvik AK. Inflammatory bowel disease. Scand J Gastroenterol. 2015;50(6):748–762. [DOI] [PubMed] [Google Scholar]
- 5.Reber SO. Stress and animal models of inflammatory bowel disease—an update on the role of the hypothalamo-pituitary-adrenal axis. Psychoneuroendocrinology. 2012;37(1):1–19. [DOI] [PubMed] [Google Scholar]
- 6.Bernstein CN, Shanahan F. Disorders of a modern lifestyle: reconciling the epidemiology of inflammatory bowel diseases. Gut. 2008;57(9):1185–1191. [DOI] [PubMed] [Google Scholar]
- 7.Rogler G, Bernstein CN, Sood A, et al. Role of biological therapy for inflammatory bowel disease in developing countries. Gut. 2012;61:706–712. [DOI] [PubMed] [Google Scholar]
- 8.Henriksen M, Jahnsen J, Lygren I, Aadland TS, Vatn MH, Moum B. Clinical course in Crohn's disease: results of a five-year population-based follow-up study (the IBSEN study). Scand J Gastroenterol. 2007;42(5):602–610. [DOI] [PubMed] [Google Scholar]
- 9.Solberg IC, Lygren I, Jahnsen J, et al. Clinical course during the first 10 years of ulcerative colitis: results from a population-based inception cohort (IBSEN Study). Scand J Gastroenterol. 2009;44(4):431–440. [DOI] [PubMed] [Google Scholar]
- 10.Moum B, Hovde Ø, Høivik ML. What have we learnt about the role of the environment and natural course of IBD in the new millennium? 20-year follow-up of the IBSEN cohort. Dig Dis. 2014;32(l):2–9. [DOI] [PubMed] [Google Scholar]
- 11.Høivik ML, Bernklev T, Solberg IC, et al. Patients with Crohn's disease experience reduced general health and vitality in the chronic stage: ten-year results from the IBSEN study. J Crohns Colitis. 2012;6(4):441–453. [DOI] [PubMed] [Google Scholar]
- 12.Opheim R, Bernklev T, Fagermoen MS, Cvancarova M, Moum B. Use of complementary and alternative medicine in patients with inflammatory bowel disease: results of a cross-sectional study in Norway. Scand J Gastroenterol. 2012;47(12):1436–1447. [DOI] [PubMed] [Google Scholar]
- 13.Lindberg A, Fossum B, Karlen P, Oxelmark L. Experiences of complementary and alternative medicine in patients with inflammatory bowel disease—a qualitative study. BMC Complement Altern Med. 2014;14:407–415. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Jäghult S, Saboonchi F, Johansson UB, Wredling R, Kapraali M. Identifying predictors of low health-related quality of life among patients with inflammatory bowel disease: comparison between Crohn's disease and ulcerative colitis with disease duration. J Clin Nurs. 2011;20(11/12):1578–1587. [DOI] [PubMed] [Google Scholar]
- 15.Heggdal K. Kroppskunnskaping. Pasienten som Ekspert i Helsefremmende Prosesser (Bodyknowledging—patients as experts in health-promoting processes). Oslo, Norway: Gyldendal Akademisk; 2008. [Google Scholar]
- 16.Halding AG, Heggdal K. Patients' experiences of health transitions in pulmonary rehabilitation. Nurs Inq. 2012;19(4):345–356. [DOI] [PubMed] [Google Scholar]
- 17.Skrautvol K, Nåden D. Nutrition as long-term care as experienced by persons living with inflammatory bowel disease: a qualitative study. Holist Nurs Pract. 2015;29(1):22–32. [DOI] [PubMed] [Google Scholar]
- 18.Belling R, McLaren S, Woods L. Specialist nursing interventions for inflammatory bowel disease. Cochrane Database Syst Rev. 2009;4:1–22. [DOI] [PubMed] [Google Scholar]
- 19.Graff LA, Walker JR, Clara I, et al. Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. Am J Gastroenterol. 2009;104(12):2959–2969. [DOI] [PubMed] [Google Scholar]
- 20.Dür M, Sadloňová M, Haider S, et al. Health determining concepts important to people with Crohn's disease and their coverage by patient-reported outcomes of health and wellbeing. J Crohns Colitis. 2014;8(1):45–55. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Eriksson K. Hälsans idé (The idea of health). Stockholm, Sweden: Almqvist & Wiksell; 1989. [Google Scholar]
- 22.Gadamer H-G. The Enigma of Health: The Art of Healing in a Scientific Age. Palo Alto, CA: Stanford University Press; 1996. [Google Scholar]
- 23.Helenius R. Förstå och Bättre Veta: Om Hermeneutiken i Samhällsvetenskaperna (Understand and better know: About the hermeneutics of the social sciences). Stockholm, Sweden: Carlssons Bokförlag; 1990. [Google Scholar]
- 24.Brinkmann S, Kvale S. Interviews. Learning the Craft of Qualitative Research Interviewing. Los Angeles, CA: Sage; 2015. [Google Scholar]
- 25.Triantafillidis JK, Merikas E, Gikas A. Psychological factors and stress in inflammatory bowel disease. Expert Rev Gastroenterol Hepatol. 2013;7(3):225–238. [DOI] [PubMed] [Google Scholar]
- 26.Von der Fehr D. Symptomer som kunnskapskilde. Et tegnteoretisk innspill [Symptoms as knowledge source. A sign in theoretical input]. Michael Q. 2010;9:28–34. [Google Scholar]
- 27.Cooper JM, Collier J, James V, Hawkey CJ. Beliefs about personal control and self-management in 30–40 year olds living with inflammatory bowel disease: A qualitative study. Int J Nurs Stud. 2010;47(12):1500–1509. [DOI] [PubMed] [Google Scholar]
- 28.Timmer A, Preiss JC, Motschall E, Rucker G, Jantschek G, Moser G. Psychological interventions for treatment of inflammatory bowel disease. Cochrane Database Syst. 2011;2:1–22. [DOI] [PubMed] [Google Scholar]
- 29.Caruso H. Your Drug-Free Guide to Digestive Health. Guelph, Ontario, Canada: Heather Caruso; 2008. www.carusohomeopathy.com. [Google Scholar]
- 30.Halmos EP, Gibson PR. Dietary management of IBD—insights and advice. Nat Rev Gastroenterol Hepatol. 2015;12(3):133–146. [DOI] [PubMed] [Google Scholar]
- 31.Joos S, Brinkhaus B, Maluche C, et al. Acupuncture and moxibustion in treatment of active Crohn's disease: a randomized controlled study. Digestion. 2004;69(3):131–139. [DOI] [PubMed] [Google Scholar]
- 32.D'Inca R, Garribba AT, Vettorato MG, et al. Use of alternative and complementary therapies by inflammatory bowel disease patients in an Italian tertiary referral centre. Dig Liv Dis. 2007;39(6):524–529. [DOI] [PubMed] [Google Scholar]
- 33.Carlson P, Falkenberg T. Integrativ vård (Integrative care). Stockholm, Sweden: Gothia Förlag; 2007. [Google Scholar]
- 34.Watson J. Postmodern Nursing and Beyond. New edition. Boulder, CO: Watson Caring Science Institute; 2011. [Google Scholar]
- 35.Baer H. The emergence of integrative medicine in Australia: the growing interest of biomedicine and nursing in complementary medicine in a southern developed society. Med Anthropol Q. 2008;22:52–66. [DOI] [PubMed] [Google Scholar]
- 36.Mullin GE, Pickett-Blakely O, Clarke JO. Integrative medicine in gastrointestinal disease: evaluating the evidence. Expert Gastroenterol Hepatol. 2008;2(2):261–280. [DOI] [PubMed] [Google Scholar]
- 37.Van Sant-Smith D. Supporting the integrative health care curriculum in schools of nursing. Holist Nurs Pract. 2014;28(5):312–315. [DOI] [PubMed] [Google Scholar]
- 38.Manderson L, Canaway R. Serious decisions: chronic conditions and choice of provider. Qual Health Res. 2013;23(12):1638–1648. [DOI] [PubMed] [Google Scholar]
- 39.Vithoulkas G, Van Woensel E. Levels of Health. The Second Volume of Science of Homeopathy. Athens, Greece: International Academy of Classical Homeopathy; 2010. www.vithoulkas.edu.gr. [Google Scholar]
- 40.Sirois FM. Health-related self-perceptions over time and provider-based complementary and alternative medicine (CAM) use in people with inflammatory bowel disease or arthritis. Comp Ther Med. 2014;22(4):701–709 [DOI] [PubMed] [Google Scholar]
- 41.Stige B, Malterud K, Midtgarden T. Toward an agenda for evaluation of qualitative research. Qual Health Res. 2009;19(10):1504–1516. [DOI] [PubMed] [Google Scholar]