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  Psychology and Biography of Patients with Ulcerative Colitis and Crohn's Disease (Part I)
  

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By: Klaus Fischer and Sibylle Grosshans

Original German title: Colitis ulcerosa- und Morbus Crohn-Patienten in psychischer und biographischer Hinsicht - Eine Studie (1. Teil), from Der Merkurstab 4/89, pages 189-203/ English by Anna R. Meuss, FIL, MITI.

Introduction
Between August 1985 and June 1987, sixty patients with chronic inflammatory bowel disease (31 with Crohn's disease, 29 with ulcerative colitis) were included in a study at Herdecke Community Hospital (Gemeinschaftskrankenhaus) in Germany. The aim was to look for additional criteria for differentiation between ulcerative colitis and Crohn's disease patients as regards psychology, biography and follow-up. The study included all patients admitted to the 32-bed gastroenterology department of the hospital during the above period on account of an acute episode of inflammatory bowel disease. Patients admitted with other diagnoses, who in the course of their stay were found to have inflammatory bowel disease as well, were not included, nor were patients who came in for a check-up but were not in an acute phase. An interview based on a semi-standardized questionnaire served to establish every patient's biography and medical history. Progress was recorded, with the patients asked to fill in stools records daily and a general condition record twice a week; the latter was also presented to the physician in charge of the patient, though in a slightly different form.

Every patient was asked to return for follow-up examination after one year or provide information on a further questionnaire. Overall evaluation and interpretation of the results was based on collaboration with whichever physician was the resident at the time. Apart from current statistical methods, which generally cover only limited aspects and do not relate to individual patients, evaluation also included individual assessment of biography and progress, which, after all, had been the basis of individualized therapy. Other criteria were: aspects of developmental psychology from the anthroposophical point of view and the attempt to establish a basic psychological constellation for the two diseases.

Morphological Aspects
The two chronic inflammatory bowel diseases are quite distinct in their morphology. Colitis generally starts in the rectum and tends to advance upwards; Crohn's disease usually affects primarily the small intestine, particularly the ileum, and spreads out from there. The colon is frequently involved at an early stage.

Endoscopy characteristically shows ulcerations curved like a bear's claws in cases of ulcerative colitis and more linear ones with Crohn's disease. Early changes in the mucosa are often so subtle in the latter case that they are easily overlooked, particularly as the rest of the mucosa appears normal.

Involvement of the mucosa also differs: ulcerative colitis affects the upper layers, whilst Crohn's disease attacks all layers of the intestinal wall and tends to start in the submucosa, principally involving also the lymph channels. Reactive changes in the lymph vessels and to some extent of mesenteric and mesocolic lymph nodes are characteristic for Crohn's disease. With both conditions the signs are that the ability to delimit intestinal contents from the "internal environment" of the organism is affected. As to the type of inflammation, reaction is more markedly granulomatous with Crohn's disease than it is with ulcerative colitis, though it has been shown that granulomas may occur with either. Chronic bowel inflammations therefore manifest in two morphologically distinct forms, with differences in spread and in the resulting morphological changes. With Crohn's disease, the development of fistulas is another typical feature.

Both diseases may lead to malignant changes when they have persisted for years.

In our opinion, the two inflammatory bowel diseases manifest in polar opposite ways. With one, the inflammation is more on the surface, involving mainly the distal parts of the colon, the function of which is to complete the separation of excretory material. The other form goes deeper, involving all layers of the mucosa, and starts in the part of the intestine where absorption is the main function. This initial situation was important in determining our therapeutic approach; it characterizes the relation of the intestine to inside and outside, with its pathological consequences. In a patient with Crohn's disease, the outside world is penetrating inwards. The body does not delimit itself sufficiently from the food substances. It is too "open". This is probably not in itself the cause of disease. Conversely, ulcerative colitis patients are unable to delimit the inner organism but open out from the inside (blood, protein, loss of fluids).

Colitis    ****************************** Crohn's disease

                        chronic bowel inflammation

large intestine                                                 small intestine
mucosa                                                            submucosa
endothelium                                                     lymph
inner world going outward pathologically        outside world coming in pathologically
hyperergic type of inflammation                       granulomatous type of inflammation
atopy                                                                immunopathy?
Schwarzmann-Sanarelli
ulcerations like bear's claws                             ulcerations linear
                                                                         fistulas

 

Review of the literature

Both diseases were for a long time considered to be "psychosomatic," as many authors had noted a close connection with emotional factors and neurotic personality structures. Complete dependence on others had been noted, also emotional immaturity, behavior lacking in maturity and responsibility, deficiencies in aggressive potential, marked narcissism, extreme hypersensitivity and a tendency to brood on conflicts and problems for a long time, with the problems sometimes entirely imaginary. 1-10

Views have now changed to some extent, with ulcerative colitis still considered a typical example of psychosomatic disease, but Crohn's disease thought to be essentially somatic. It is true to say, however, that psychological abnormalities are also regularly seen in patients with Crohn's disease. It is merely that the connection with the disease is not considered to be as close as used to be the case. Collaboration between the psychosomatic school and gastroenterologists or specialists in internal diseases has been the exception rather than the rule, which has not helped research into the two diseases.

In individual cases, authors have thought the first – mainly psychosomatic – changes may go back to early childhood, finally leading to chronic bowel disease.12,13 These were papers published in the 1950s. Wener 14 described an "experiment" in 1950, where changes in blood supply to the colon were part of a generalized response to emotional stress in a colostomy patient with the mucosa of the colon exposed to view. Reactions to anxiety, stress, fear and pain consisted in reduced blood flow and slowed-down peristalsis. Anger, prejudice and hostility on the other hand caused increased blood flow, i.e. hyperemia, with a moderate increase in colonic motility.

Attempts have also been made to ascribe this type of connection between psychological and physical reactions to the influence of the autonomic nervous system on digestive function.10 On the assumption that the immune system has some kind of perceptive function other authors suggest pathological connections between digestive processes and immune system, 15-17 e.g. the inability to maintain the distinction between self and non-self. Szas 18,19 speaks of hyperexcitability of the parasympathetic system; in the case of chronic bowel inflammation he refers to regressive innervation, as the parasympathetic system develops earlier than the sympathetic system and the syndrome suggests functional dominance of the former.

Inability to be psychologically contained, lack of independence and difficulties in maintaining self-confidence, being easily influenced by others, are characteristics found with increased frequency in patients with chronic inflammatory bowel disease. Well into the 1970s these character traits were indiscriminately ascribed to both forms of the disease. One reason for this may be that it was relatively late before morphological differentiation was made with greater certainty. Triggering factors and premorbid signs are not clearly distinguished by individual authors and are presented more or less at random in the earlier literature. Modern authors essentially assume an underlying neurotic structure, mainly with colitics, but also with patients suffering from Crohn's disease,27 and consider emotional and stress-induced factors to be essentially triggers for recurrences and active phases.

Over the last ten years, a beginning has been made to use a differentiated approach based on psychological factors to the two syndromes, with papers published by Feiereis and Freyberger and before that also by Reindell. 20-28

The connection between onset and emotional disorders has also been the subject of a number of publications, with many authors coming to the conclusion that such a connection exists.13,19-34

Table 1
Distribution of Sexes

31 patients with Crohn's disease
16 F: 15 M        —> F: M = 1.06: 1

29 patients with ulcerative colitis
18 F: 11 M        —> F: M = 1.63: 1

Mean age at onset                               Crohn's disease             23.0 years
(onset = onset of typical symptoms)    ulcerative colitis             25.9 years

Mean age on admission to                  Crohn's disease              29.3 years
Herdecke Hospital                               ulcerative colitis              25.9 years

Mean duration on admission to           Crohn's disease              6.27 years
Herdecke Hospital                               ulcerative colitis              5.44 years

DURATION


In recent years, "objectifying" studies relating to personality traits and emotional factors have been published. They present endless methodological problems and have thrown the whole issue into utter confusion. The concept "emotional disorder" is beginning to be differentiated from neurotic, psychotic, hysteriform and other personality types.

Psychosocial disorders have been explored among others by Reindell, Zisook, Latimer and Petzold. 21,33,35,36 Here, the doctor-patient relationship assumes importance, and increased efforts are made to put it to therapeutic use. Physician and patient tend to have general preconceived ideas about each other. The actual encounter involves increasing individualization of the relationship, so that a task evolves for both parties.

At this point, Petzold and Reindell found a difference in the psychic structures of the two syndromes. 21, 35 They developed a therapeutic approach that sought to include the ward situation (1977).

Apart from an emotional level and the above personality traits, some authors, particularly in the Anglo-American literature, also mention reactive processes at the psychological level; these develop as duration of the illness increases and have to be defined in that context. 32,33

The possibility of distinguishing between emotional bonds and reactions, personality traits and reactive psychological elements were of particular interest in our own study. In the medical world, the ranking value of such differentiated psychic aspects and their connection with somatic diseases has always been a subject for discussion. The question to be asked is how far triggering factors can be differentiated from underlying factors on the psychological level, and ultimately the time relationships involved. Questions that were important to us were: to what extent can a time relationship with external factors be established? can particular personality traits be differentiated on the basis of development and biography? and, finally what is the possible significance of such elements against the background of anthroposophically orientated developmental psychology?

Results

Crohn's disease
The age range of the 31 patients with Crohn's disease was 17 – 51 years (mean age 29 years). The ratio of women to men was 1 : 1.06. Mean duration from onset of clinical symptoms was 6.06 years (0 –19 years).

If onset was based on endoscopic and/or radiological confirmation of the diagnosis, the mean duration was only 4.6 years. This is due to the fact that onset is often gradual, so that a high percentage of patients only had a definite diagnosis made months or years later.

The mean age at onset was 23 years. 45% of our patients contracted the disease between the 11th and the 20th year, another 38% between the 21st and 30th year. The age structure was therefore comparable to that given by Feiereis. 22,23 The severity of the condition on admission to the Hospital was stage 3 in 64.5% (marked reduction in general condition, clear pathological signs and/or concomitant disease), stage 2 in 29% (clear pathological signs: colic, diarrhea, loss of weight, loss of appetite, depression) and stage 1 in 6.4% (mild symptoms, no marked reduction in general condition) (Table 2).

Table 2
31 Patients with Crohn's Disease Classified According to Stage

Stage 1                2 patients                    =         6.4%
Stage 2                9 patients                    =        29.0%
Stage 3                20 patients                  =        64.5%

1 mild signs and symptoms, no appreciable reduction in general condition
2 definite signs and symptoms (colics, diarrhea, weight loss, lack of appetite, depression)
3 marked reduction in general condition, definite signs and symptoms and/or concomitant disease

29 Patients with Ulcerative Colitis Classified According to Stage

Stage 1             3 patients                    =       103%
Stage 2             12 patients                  =       41.3%
Stage 3             14 patients                  =       483%

1 minor subjective and objective symptoms
2 between 1 and 3
3 full syndrome, with temperature, marked tenesmus, marked general symptoms, 10 -30 diarrheic stools per day, with considerable local inflammation (after Feiereis)

Table 3
In-Patient Stay

Mean in-patient stay (excluding any in-patient stay following referral) was as follows:

31 patients with Crohn's disease        50.0 days
29 patients with colitis                         54.4 days

Classified according to stage, the figures are as follows:

Mean duration of hospital stay was 50 days, the average figures being 23.5 days for stage 1, 39.3 days for stage 2, and 57.4 days for stage 3. Table 4 gives data on marital status, partners and children. Endoscopy showed involvement to be as follows: 12.9% (4 patients) with terminal ileitis, 22.6% (7 patients) Crohn's colitis, 35.4% (11 patients) involvement of small and large intestine, 25.8% (8 patients) involvement of small and large intestine with fistulas. 3.2% (1 patient) had clinical features only.

Table 4
Marital Status, Partnership, Children

                        Patients with Crohn’s Disease          Patients with Colitis

Married                                      41.9%                         48.3%
Est. partnership                        25.8%                         24.1%
Divorced                                   16.1%                         10.3%
Married more than once           9.7%                           10.3%
Currently separated                  6.4%                           - - -
Frequent change of partner      9.7%                           10.3%
Children                                    28.8%                         51.7%

38.8% (12 patients) had had surgery, another 16.1% (5 patients) had surgery whilst in our care. The indications for surgery were established for another 16.1% (5 patients), but the patients refused the operation.

Details concerning age, sex, duration of the disease, stage, and current occupational or educational status are shown for both types of inflammatory bowel disease in Tables 8, 1 and 2.

The patients with Crohn's disease were initially reluctant to give personal details. None of them refused the interview, but progress was often very slow to begin with. First, monosyllabic answers would be given to question after question, until one finally succeeded in asking the question that made the patient take an active part in the conversation. Once they got going, patients usually spoke at some length about their emotional situations. It was generally noticeable that early childhood memories were few. Memories altogether tended to have a negative aspect, even if objectifiable events would not initially show this (e.g. when talking to parents). Due to a parental death or divorce before they reached their 14th year, 45% of our patients had grown up in the care of a single parent. It was possible to establish objectively that 58% of these patients spoke of a permanent conflict situation at home, feeling themselves helplessly exposed to this from their earliest days, and consciously aware of it from their 7th or 8th year onwards. Isolation and loneliness in childhood were also reported by patients who had not lost a parent through death or divorce. Altogether 69% spoke of such experiences in childhood. The reactions to them varied; either there would be increased desire for contacts outside the home and hence a tendency to distance oneself inwardly from the family home, or the individual would become a loner.

The experience of loneliness evidently arose from a feeling of not being really loved by the parents. 20% of patients gave expression to this by saying that they had never really been allowed to be children at home. 25% of patients said they frequently had to intervene when there was strife between their parents and that they had felt there were forced into that particular role. In 45%, the father also played a negative role, either by contact being lost following a divorce, or because the father did nothing to encourage contact, even if the marriage was intact. 25% of patients also had problems with their relationship to their mothers. Unlike other authors, we found that the mother was only rarely a dominant personality. This factor could only be confirmed for colitis patients. In more than 50% of cases, the relationship to the parents was said to be not good. Six patients gave a definite preference for their fathers and only four for their mothers.

Some patients had problems at school in so far as they were teased for being small in size or on account of other physical features (13%) or because their parents put them under pressure to achieve. 29% were thus forced into a situation where excessive demands were made. 13% of patients with Crohn's disease had to leave school at 16 because their parents could not afford to bear the cost of higher education.

School leaving levels (including the catch-up route possible in Germany) showed a marked difference compared to colitis patients: 16% had the equivalent of junior college, 10% finished a trade school, 35% the equivalent of junior high school and 23% equivalent of grade school. Only one patient had a university degree.

Some of the excessive demands had come from parents, with many patients stating that they felt out of their depth in high school and were doing less and less well, which resulted in scenes at home. 25% of patients with Crohn's disease said they stopped going to school or continue their training – most of them before onset of the disease.

Table 5
Patients with Crohn's disease

Operations for Crohn's disease
(incl. surgical treatment of fistulas and appendectomy
shortly before diagnosis was made)

 1 operation                                               11 patients    =   35.48% 
2 operations                                              2 patients      =      6.40% 
3 operations                                             1 patients        =      3.20% 
no operations                                           17 patients       =   54.80%   

Extra-intestinal Manifestations:

Joint pain, arthritis                                      8 patients       =   25.8% 
Erythema nodosum.                                    3 patients         =  9.6%   
Pyoderma gangraenosum                                           - - -     
Stomatitis aphthosa                                  2 patients      =        6.4%   
Anal fissures, fistulas, abscesses               7 patients             22.5%     
Other fistulas                                             2 patients      =         6.4      
Febrile episodes                                         10 patients    =       32.2% 

Raised pancreatic enzyme levels
indic. of concomitant pancreatitis                2 patients  =           6.4%   

Raised liver test values indic. of
concomitant hepatitis or cholangitis            4 patient    =           12.9% 

No extra-intestinal manifestations              13 patients =          41.9% 

Figures refer to extra-intestinal manifestations noted during current in-patient stay only.

Two thirds of patients with Crohn's disease had frequent respiratory and/or allergic conditions in childhood (asthma, hay fever, etc.). 35% had had a tonsillectomy before they developed Crohn's disease, 42% an appendectomy (remarkable frequency of this before they had reached their third year). Almost 20% had had frequent gastrointestinal complaints in childhood.

Like the colitis patients, those with Crohn's disease remembered too well the occasions when they had been in hospital or sent away to convalesce; they almost always rated this a negative experience, when they had felt left alone and abandoned.

This is a common experience for patients with Crohn's disease. They feel rejected by those around them and experience a loneliness that is not even perceived by outsiders. If there are difficulties at home, or also at school, they are initially unable to defend themselves; their desire for harmony does however enable them to act as mediators. They can take a very active role in this respect, quite in contrast to ulcerative colitis patients who barely recognize such conflict situations and if they do will only rarely feel called on to act as mediators. 25% of patients with Crohn's disease referred to themselves as mediators.

38% left home early to live their own lives, evidently out of a marked desire for independence. This would frequently create innumerable new problems because they did not cope with the change as well as they'd thought they would, or because new relationships meant new and unexpected problems. It is only sometimes that the disease itself is seen to be the main factor in this. The tendency to become isolated and feel that "they could not fully participate in the world" would increase as a result. Relations to home may actually improve at this stage; asked about their relationship with their parents, most patients give very committed replies, which may be positive or negative. It is notable that their relationship to their parents is only rarely a matter of indifference. 29% of patients still feel fully responsible for at least one parent

Table 8.

Patients with Crohn's disease
Sex, age, duration of disease, degree of severity, education and present occupation


The actual onset (as far as possible we established the time when symptoms first appeared) had usually been preceded by a life crisis, though this may have been up to six months earlier. Essentially the crisis arose because of: a) loss (e.g. a death in the family, separation of parents or from partner, move to a new home or change of job) in 36.4%, b) excessive physical or mental demand situation (e.g. stress at work, at school or due to conflict in the partnership) in 42.8%.

Patients often had not noted the connection, as onset is frequently gradual and tends to be ignored for months. It is also common for the diagnosis to be made much later, so that reconstruction involving the parents was needed in many cases to establish the probable connection.

We are convinced, however, that the time interval between a biographical event and onset, or onset of a recurrence, is generally greater than it is with colitis patients. The latter are also always able to see a direct connection between their symptoms and events of this type. It was possible to establish events of this kind in just under 80% of patients with Crohn's disease, and looking back, the patients said that these events had had a negative effect on their lives.

The first symptoms most commonly noted were diarrhea (44.8%), abdominal pain (32%), blood in stools (6.4%) and sudden abscess or fistula in anal region (12.8%). Retarded growth as a sign of the fully developed disease was noted in 9.6 %.

Morphological and clinical signs and symptoms are often not in agreement, nor does the patient's condition always reflect the objective changes. We found on a number of occasions that severe intestinal changes had resulted in relatively minor reduction in general health, whilst on the other hand relatively minor changes caused considerable functional problems, e.g. with isolated terminal ileitis. This also applies in ulcerative colitis, in fact even more so. Patients with Crohn's disease will easily show an underlying depressive mood of which the patients themselves are not aware. In this respect, too, they frequently differ from colitis patients.

When taking the history of patients with Crohn's disease – and also working with them during their stay in hospital – we found that they are often self-assured and demanding, though this attitude is relatively easily shaken. Their approach is direct, not hiding things and generally honest, but frequently ironical, and sometimes downright cynical. Replies tend to be hesitant, there is a certain reserve in conversation, and even those who are more open are rarely as spontaneous as colitis patients tend to be.

Considering appearance, emotional maturity and interests expressed or noted during their time with us, some of the patients appeared younger than their age, others appeared older than they were and therefore relatively rigid and fixed emotionally. A total of 47% of the patients did not impress us as being their age.

Almost half of our patients (14) developed the disease between the ages of 18 and 22, the rest between 14 and 42. In 90% it was possible to see a connection between external events and the onset of new acute phases or deterioration of the existing condition. Again the onset of symptoms is not as rapid and severe as it can often be in the case of colitis patients.

Table l l

Patients with Crohn's disease
Treatment and progress, incl. follow-up assessment 1 year after discharge


 
Notes on follow-up (Table 11)

progress excellent                   subjective improvement, in remission
progress moderate                  subjective improvement, 1 or more mild attacks
progress satisfactory               1 medium severe attack and/or several mild attacks;                                                                         subjective improvement maintained
progress not satisfactory         1 severe or prolonged moderately severe attack, may require                                               adm. to hospital, poss. fistulas
progress poor                          number of severe attacks or persistent active phase not                                                       completely controlled with heavy medication (Salofalk,                                                           cortisone, metronidazole). 1 or more admissions to hosp.,                                                         poss. fistulas or abscesses
general condition                     questionnaire filled in by patient
                                                patient did not return questionnaire

Discussing their future prospects all patients essentially showed marked anxiety. This was due to the fact that the current domestic and occupational situation would be seen as promoting the disease. On the other hand there was reluctance to change, as patients felt they could not judge the possible consequences. They usually know from experience that situations easily become unmanageable for them. They are also afraid to put personal relationships at risk and in this way lose the space that had been achieved with such effort in a two-or three-sided relationship, and this is a major obstacle to change.

This is an important element in the therapeutic approach. These patients have tremendous sensitivity, much more differentiated than it appears from outside; this makes them much more receptive to outside influences. If these are too powerful, paralysis of the will may lead to inner emptiness. This should be the primary goal of therapy (e.g. liver therapy). The danger of having to get back into the old situation again after leaving hospital, and with this to relationships that carry the taint of the disease, should be reduced as far as possible.

We made it our business not to discharge these patients unless a clear picture had arisen as to how they would go through each day in future. The more successfully this is done, the more can we count on the situation as a whole being stabilized.

Fig. 12
31 patients with Crohn's disease


Individual patients are shown on the abscissa. The graph shows the time interval between negative experiences in the biography and diagnosis and/or onset. In ulcerative colitis patients, diagnosis and onset usually coincide. The graph shows that the majority of negative experiences came around the ninth year of life, with no correlation to onset. A line has been drawn to connect individual experiences. Unlike ulcerative colitis patients, patients with Crohn's disease also show an increased incidence of negative experiences around the 21st year of life.

The straight line represents regression relative to first negative experiences.


Summary
Patients with Crohn's disease generally take a negative view of their childhood. Considerable feelings of isolation, not immediately apparent but usually clearly evident to the interested observer, tend to play a dominant role. It is clear that childhood did not help these patients to build the protective form that allows them to trust the environment. They are distrustful, frequently showing a highly differentiated emotional life, but with the will easily paralyzed. They have difficulties fitting into the social environment. The patients seek to improve themselves professionally, often by roundabout routes, and show some perseverance in this; they seem less ambitious on the whole than ulcerative colitis patients. Behavior is rarely adapted, usually rather contrary and apt to cause offense. The predominant basic mood is melancholic or depressive and may increase as the disease progresses. These patients are rarely intellectuals but rather quiet and thoughtful; they do not find it easy to open up to others.

Part II will be concerned with ulcerative colitis, results of treatment, a discussion of the methodology and psychosomatic aspects. Summary and references to follow.

 

Authors' address: Gemeinnutziges Gemeinschaftskrankenhaus Herdecke, Klinikum der Universitat Witten/Herdecke, Beckweg 4, 5804 Herdecke, Germany.

 

 





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