Soiling

Twenty-two percent of parents reported no soiling, but 48% (grade 1) experienced occasional soiling. Of the 30% of parents whose children had daily soiling, 9% reported social problems (grade 3) and 21% (grade 2) did not have major social problems.

Considering the degree of satisfaction with the treatment by the primary surgeon, we examined whether there was any relationship between continence results and parental satisfaction. Regarding constipation, the majority (80%) were satisfied in cases of no constipation or grade 1. However, in grades 2 and 3 the satisfaction with the first-line surgeon fell to 60%. High contentment was present when there was no soiling (80%), but the soiling grade (grade 1 and 3) were equally distributed (50%) between satisfied and unsatisfied parents. Even the parents in grade 2 with soiling every day but without social problems showed a high rate of contentment (83%). In conclusion, contentment with the primary surgeon depended only in part on the continence outcome.

These continence results have to be put in the context of the type of malformation, as even 80% of perineal fistula children had constipation. The majority of these were treated by dietary changes or laxatives. In children with perineal fistula the outcome for specialists

Table 37.6 Degree of satisfaction with aftercare by different specialists

Follow-up by specialist

Not offered

Not satisfied

Satisfied

Surgeon/clinic performing pull-through

10%

32%

58%

Other surgeon

24%

17%

59%

Urologist

46%

15%

39%

Paediatrician

10%

25%

65%

Nursing staff

39%

12%

49%

Physiotherapist

44%

6%

50%

Ergotherapist

69%

3%

28%

Psychological support

83%

7%

10%

Dietician

67%

12%

21%

Stoma therapist

50%

6%

44%

Social worker

92%

4%

4%

Alternative medicine

55%

7%

38%

Other parents

21%

4%

75%

soiling was divided equally between none, occasional or daily soiling. With rectobulbar fistula, most cases needed enemas (grade 3) or at least laxatives (grade 2) because of constipation. Occasional or daily soiling was equally named without major social impact. The cases of so-called vaginal fistula, as well as vestibular fistula and rectovesical fistula usually needed enemas for constipation, and occasional soiling occurred.

In 43% of children with high ARM, bowel action frequency was more than four times a day on two or more days each week. This feature should not be classified as "diarrhoea" (39% of high ARM with thin stool at least occasionally). The risk for pseudo-incontinence has to be considered, especially in this specific type of malformation.

Table 37.7 Social, financial and psychological impact on the family

Impact-on-family scale (items)

Better

Similar*

Worse

Financial burden (4)

46%

33%

21%

Daily social impact (15)

15%

72%

13%

Personal strain (5)

5%

79%

16%

Parental coping problems (3)

12%

71%

17%

Concerns regarding siblings (6)

31%

52%

17%

Total impact score (27)

7%

79%

14%

*Mean reference population ± one SD

*Mean reference population ± one SD

Constipation Prescription

Constipation Prescription

Did you ever think feeling angry and irritable could be a symptom of constipation? A horrible fullness and pressing sharp pains against the bladders can’t help but affect your mood. Sometimes you just want everyone to leave you alone and sleep to escape the pain. It is virtually impossible to be constipated and keep a sunny disposition. Follow the steps in this guide to alleviate constipation and lead a happier healthy life.

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