Experience with ileostomies

Experience with lleostomies Evaluation

of Long-Term

Rehabilitation

in 497 Patients PAUL H ROY, MD, Rochester, WILLIAM OLIVER GEORGE

In the past ten to fifteen years morbidity and mortality associated with total proctocolectomy and ileostomy have declined progressively. The number of patients restored to normal health as a result of removal of diseased bowel and the establishment of a permanent abdominal stoma continues to increase, and this fact is well recognized by the most conservative internists and surgeons. Consequently, definitive surgical procedures have become accepted as an important part of the armamentarium for the management of several serious, and often fatal, diseases of the large intestine. Despite these facts, both patients and physicians continue to procrastinate in making and accepting the decision to proceed with proctocolectomy and the establishment of a permanent ileal stoma. As a result, unfortunately, many patients are refused the appropriate surgical attention until major complications have occurred which may jeopardize their chances for a successful recovery. In our opinion one of the most common causes for procrastination is the fear that a permanent abdominal stoma will bring many complications and troublesome experiences, and that it will preclude full and complete rehabilitation. Improvement in technics as a result of contributions made by Brooke [I] and Turnbull [2], as well as significant improvements in the design and management of appliances, has enhanced considerably the outlook for the patient with a permanent ileostomy. It remains difficult, however, to give adequate advice to patients regarding the effects of a proposed ileostomy on their activities for their lifetime after ileostomy. With these factors in mind, the present study was undertaken to assess the problems encountered at the Mayo Clinic concerning the creation of a satisfactory ileal stoma and to evaluate the ultimate effects of ileostomy on the rehabilitation of the patients. Similar From the Mayo Clinic and Mayo Foundation: Section of Medicine (Dr Sauer). Surgery (Dr Beahrs), and Surgical Pathology (Dr Farrow). Mayo Graduate School of Medicine (University of Minnesota). Rochester: Resident in Surgery (Dr Roy). Presented at the Tenth Annual Meeting of the Society for Surgery of the Alimentary Tract, New York, New York, July 12 and 13. 1969.

Vol.

119,

January

1970

G SAUER, H BEAHRS, M FARROW,

MD,

Minnesota

Rochester,

Minnesota

MD, Rochester,

Minnesota

MD,

Rochester,

Minnesota

studies have been reported from England within the last few years [3-61. Material and Methods

Clinical records of all patients with permanent ileostomies established as part of the definitive treatment of colonic diseases requiring total colectomy and total proctocolectomy were reviewed. Patients were excluded from the study when the operative procedure was limited to the construction of an ileal stoma without resection of the colon. Forty-two patients included in the series had had surgery for colon disease prior to 1951 but also required subsequent surgical treatment including revision of the ileostomy during the period of review. Therefore, the study represents the experience with 497 patients during the years 1951 through 1965, inclusively. In the earlier years most patients underwent total proctocolectomy by staged procedures. More recently, however, the procedure has been performed at a single operation, except in certain emergency conditions when only the abdominal part of the colon was removed initially and in selected instances when the rectum was spared with the hope of later re-establishment of intestinal continuity. To make a more meaningful review of the available material, the pathologic classification of the heterogeneous group of inflammatory diseases was reconsidered critically. One of us (GMF), therefore, reviewed personally all available histologic specimens in these patients and final classification was made according to this review. Follow-up information was obtained from the records of patients returning for examinations and from correspondence with the patient, his family, and his home physician. Six patients (1.2 per cent) were lost to follow-up study. Eighteen failed to answer the inquiries at the time of this review, but in all of these cases, follow-up data for two to sixteen years (mean 7.4 years) were available for analysis. Of the 497 patients, 344 answered a detailed questionnaire regarding their ability to manage their ileostomy and the quality of their personal, social, and economic states of life. Totally, information on 497 patients was available for study and forms the basis for this report. Pathologic Classification

Of the 497 cases reviewed, 458 patients underwent various forms of colonic resections for inflammatory 77

Roy et al

diseases and 39 for noninflammatory lesions. Classification of the latter group was made according to the original pathologic reports. Twenty-four patients had multiple polyps of the colon with carcinomas, five had familial polyposis with carcinomas, and seven had multiple carcinomas. Three other patients required ileostomies after failure of other procedures in the management of aganglionic megacolon. According to the pathologic characteristics now recognized [7-111, the group of inflammatory diseases was further classified into those with diffuse idiopathic chronic ulcerative colitis (mucosal ulcerative colitis) and those with granulomatous colitis or Crohn’s disease (transmural ulcerative colitis). The histopathologic features of chronic ulcerative colitis and of Crohn’s disease are sufficiently distinctive to allow clear separation of the two diseases in the vast majority of cases. Unless complicated by the unusual event of perforation of the bowel with subsequent peritonitis, the lesions of diffuse chronic ulcerative colitis remain limited to the mucosa and submucosa. Small abscesses featuring collections of polymorphs and situated deep within the colonic mucosal crypts are typical findings. As the crypt abscess enlarges, an undermining inflammatory process develops that lifts the mucosal surface away and results in an irregular ulcer. The mucosa, if partially attached, will appear as a pseudopolyp. As the disease becomes more chronic, the acute inflammatory process gives way to chronic inflammatory infiltration, still mainly localized in the mucosa and submucosa. After repeated episodes of ulceration and regeneration, a progressive atypia of the mucosal cells may develop and may eventuate in the development of colonic carcinoma. Crohn’s disease, in contrast to diffuse chronic ulcerative colitis, is a disease of all layers of the bowel. One of the earliest changes is an increase in the chronic inflammatory cells, particularly lymphocytes and plasma cells within the submucosa, accompanied by prominent dilatation of lymphatic channels. These are distended with lymph, and edema of the affected bowel is pronounced. Ulceration of the mucosa occurs, usually in a linear configuration, and the ulcers, rather than being superficial and undermining, are deeply penetrating, and the development of fistulous or sinus tracts may result. Inflammation of the deeper tissues, particularly the muscularis propria, is an early and constant characteristic of the disease and may take the form of collections of lymphocytes and plasma cells, often with prominent germinal centers, or, in approximately half the cases, epithelioid change occurs in histiocytes giving rise to small noncaseoGs granulomas scattered throughout all layers of the bowel and adjacent mesenteric lymph nodes. With chronicity, the destructive inflammatory aspects of the disease give way, in part, to fibrotic replacement, and 78

the wall of the bowel is thickened and the lumen becomes stenotic. Atypical changes within the mucosal cells are not seen. All specimens of inflammatory disease were reviewed except in fifty-six cases of unequivocal chronic ulcerative colitis with carcinoma, in which the original diagnosis was accepted without review. Specimens were not available in thirty-two other cases, which were classified according to the clinical, x-ray, and proctoscopic features and according to the descriptions made in the original pathologic reports. In four of these the disease was considered as granulomatous colitis and in the remainder as chronic ulcerative colitis. In the total group of 340 patients with diffuse idiopathic chronic ulcerative coiitis, 68 had carcinoma; in the 118 patients with granulomatous colitis, 29 had involvement of both small and large intestine by the disease process. The sex distributions in the different groups are shown in Table I, and the age distribution at the time of operation is given in Table IT. Operative

Mortality

Of 497 patients who underwent various operative procedures, 28 (5.6 per cent) died before dismissal from the hospital after the first operation performed during the period under review. (Table III.) Sixteen of the twenty-eight patients who died had serious complications : acute toxic megacolon in ten, acute fulminating hemorrhage in two, and intestinal perforations in four. In emergency cases, the mortality was 19.0 per cent as compared to 3.3 per cent in elective cases. In eleven patients death occurred after proctocolectomy and in fourteen it followed subtotal colectomy. Three other patients failed to survive after less extensive procedures : abdominoperineal resection and establishment of permanent ileostomies in two patients who had previously undergone colectomy and ileorectostomies, and revision of the ileostomy in one patient who had previously undergone subtotal colectomy. The causes of postoperative deaths (Table IV) illustrate the high incidence of peritonitis in patients having granulomatous colitis and of other septic conditions in patients having chronic ulcerative colitis. Since many patients had undergone various forms of resection in the early years of this study, it was impossible to determine an exact mortality for each. However, in the last six years (1960 through 1965), there were six postoperative deaths among 133 patients who underwent one stage total proctocolectomies, an over-all mortality of 4.5 per cent. Late Mortality

Mortality was evaluated for patients after their dismissal from the hospital. Since the mortality of patients with cancer was greater than that for patients with benign disease, the rates are reported separately The American

Journal

of Surgery

lleostomy TABLE

I

Sex:

All

Patients

TABLE

Totol

Male

Ill

Deaths

In

Female

Deaths

Num-

Per

Num-

Per

Num-

Per

ber

cent

ber

cent

ber

tent

Total

Group Group

Chronic Chronic colitis Gronulomatous

colitis

340

60.4

182

66.7

158

70.5

118

23.7

67

24.5

51

22.0

39

7.9

24

0.8

15

6.7

497

100.0

273

100.0

disease 224

100.0

and also whether death occurred within or after the first year from the date of initial operation during the period under review. (Table V. ) Group with Chronic Ulcerative Colitis. Of the 340 patients with chronic ulcerative colitis, 320 survived and were dismissed from the hospital. Of these, fiftyeight (18.1 per cent) subsequently died. The mortality was 53.0 per cent for patients in whom carcinoma developed complicating ulcerative colitis as compared to 9.1 per cent for patients with chronic ulcerative colitis but without malignant lesions. In the latter group, eight of the 254 patients (3.1 per cent) died within the first year after operation and fifteen (6.1 per cent) of the remaining patients died from 1.5 to 13 years (average 6.5 years) after operation. The mortality in the sixty-six patients with malignant lesions was 15.2 per cent in the first year and 44.6 per cent thereafter. The mean survival for the twenty-five patients who lived through the first year but died subsequently was 3.9 years, but it was only 2.7 years when deaths resulted from recurrence or metastasis of carcinoma. Group with Granulomatous Colitis. Of the 110 patients with granulomatous colitis who survived operation, twenty (18.2 per cent) subsequently died. Eight deaths (7.3 per cent) occurred within the first year and twelve (11.8 per cent) a year after hospital dismissal. The mean survival after the first year was five years and ranged from 1.5 to 11 years. Causes of Late Deaths. The causes of death occurring after the immediate postoperative period are II

Age

340

GrolllJ-

Ulcerative Total

ber

6.0

39 497

28

5.6

shown in Table VI. A high incidence of deaths resulted from recurrences and metastasis in patients undergoing operation for chronic ulcerative colitis complicated by the development of carcinoma. The five deaths caused by hepatic failure occurred in patients who had associated cholestatic liver diseases, one of whom also had a pelvic abscess and septicemia. The diagnoses of intestinal obstruction and intestinal perforation were made at autopsy in two patients who died elsewhere. The relationship of these complications to the ileostomy could not be determined. Two of the three deaths from intestinal obstruction which occurred in the granulomatous group followed operations for these complications in other centers and the exact causes were not known, One patient who died of septicemia and one who committed suicide were known to have had recurrence of granulomatous colitis. In both groups, a total of four deaths occurred after revisions of the ileostomy, two of which had been performed at this clinic. Deaths in Group with Noninflammatory Disrases. All thirty-nine patients with diseases other than chronic ulcerative colitis and granulomatous colitis survived the surgical procedures. Three had benign lesions and were alive at the time of follow-up examination. Of the thirty-six patients who had carcinoma, twenty-three (63.9 per cent) were known to have died. Four of the six deaths in the first year and thirteen of the seventeen deaths afterward resulted from recurrences or

Per

Number

cent

Number

Disease

Per cent

Number

Per cent

Causes

Postoperative

Deaths

4

Hemorrhage

3

Acute

enteritis

3

Renal

failure

0.4

2

0.6

lo-19

32

6.5

24

7.1

a

6.0

... . .

20-29

129

26.0

82

24.1

38

32.2

9

23.1

Peritonitis

.

Ulcerative Colitis

Septicemia

2

Vascular

30-39

118

23.7

80

23.5

30

25.4

8

20.5

Subdural

118

23.7

89

26.2

22

18.6

7

17.9

Endocarditis

50-59

69

13.9

44

12.9

16

13.6

9

23.1

Pulmonary

6Of

29

5.8

19

5.6

4

3.4

6

15.4

Bronchopneumonia

497

100.0

340

100.0

118

100.0

39

100.0

Total

Granulomatous Colitis

2

thrombosis

40-49

1970

of

Chronic

flammatory

Colitis

Per

Causes

IV

Nonin-

lomatous

Colitis

cent

119, January

a

118

Total

o-9

Vol.

5.9

Noninflammatory

TABLE

Num-

20

Distribution Chronic

Total

Per cent

Gronulomotous

disease

Total

(Yd

Number

ulcerative

colitis Noninflommotory

Age

Cases

ulcerative colitis

TABLE

Hospital

hematoma

2

1

2

5

1 1

embolism

1

1

1

1

20

8

79

Roy et al Late Mortality

TABLE V

(Patients

Surviving

Operation) Deaths in First Year

Surviving Operation

Group

Number

Total

Deaths after First* Yeor -

Number of Patients Per cent

Number

-Number

Per cent

Per cent

Chronic ulcerative colitis Without corcinomo With carcinoma Gronulomatous colitis

254

a

3.1

15

6.1

23

9.1

66

10

15.2

25

44.6

35

53.0

110

a

7.3

12

11 .a

20

la.2

36

6

16.7

17

56.7

23

63.9

Noninflammatory disease With corcinomo

3

Without carcinoma

*

Percentages calculated on number of patients surviving after first year.

metastasis. Two patients died of unrelated causes and in four no definite diagnosis could be obtained. The average survival after the first year was four years and ranged from fourteen months to ten years. No deaths in this group were attributed directly or indirectly to the ileostomy. Complications

of the lleostomy

As expected, complications of ileostomy necessitating further surgical intervention were frequent in the earlier years of this review. In this series, 455 patients had a permanent ileostomy for the first time. Of the 455 patients, 103 (22.6 per cent) required subsequent revision of the stoma and underwent a total of 128 operations. In fifty cases, ileostomy was established by simply bringing the ileum through a slit in the abdominal wall; twenty-two of the fifty (44 per cent) required revision. A total of 104 skin-grafted ileostomies were established and in forty-two (40.4 per cent) patients revision was required. In 343 paTABLE VI

Caures

tients, ileostomy was fashioned by eversion and primary suture of the mucosa of the ileum to the skin according to the methods described by Brooke [I] in 316 cases and Turnbull [2] in twenty-seven cases. In fifty of these patients (14.6 per cent) surgical revision was subsequently required for complications. (Table VII.) Six of twenty-two patients in the group with granulomatous colitis required revision because of recurrent disease in the terminal portion of the ileum. Half of these had involvement of the small intestine at the time of colectomy. In this same group a third of the patients who underwent revision for ileocutaneous fistulas at the stoma also had disease in the small intestine at the time of their first operation. In patients with chronic ulcerative colitis, the presence of “backwash ileitis” did not seem to increase the incidence of stoma1 complications. Of the patients with chronic ulcerative colitis, twenty-three (9.7 per cent) required refashioning of their ileostomies, but the inci-

of Late Deaths Chronic Ulcerative Colitis

Without Carcinoma Cause

With Carcinoma Number

Cause

Granulomatous Colitis Number

Cause

Number

Within First Year Uremia

2

Carcinoma

6

Intestinal perforation

2

Septicemia

1

Pulmonary embolism

1

Intestinal obstruction

3

Myocordial infarct

1

Pulmonary embolism

1

Ruptured aorhc aneurysm

1

Suicide

1

Not known

3

Total

Not known

a

3

Not known

1

a

10

After First Year Pulmonary embolism

I

Carcinoma

Intestinal obstruction

1

Hepatic failure

2

Brain abscess

1

Intestinal perforation

1

Renal failure

2

Malabsorption

2

Other malignant lesions

4

Adrenal failure

1

Other malignant lesions

1

Hepatic failure

3

Brain tumor

1

Pulmonary embolism

1

Accident

1

Accident

2

17

Septicemia

3

Suicide Not known Total

80

3 15

Not known

2 25

Not known

2 12

The American Journal of Surgery

lleostomy dence increased to 26.5 per cent in the group with granulomatous colitis, The interval to the time of revision in the chronic ulcerative colitis group ranged from one month to five years and averaged 1.8 years. In the granulomatous group, the mean interval was 1.l years, but it was 2.4 years if revision was required because of recurrent disease. In the noninflammatory group twenty-three patients had everted mucosal types of ileostomies. Five of them (21.7 per cent) underwent revisions, two, for prolapse and one each for obstruction, fistula, and parastomal herniation. Ileitis had not developed in any of these patients. Intestinal Obstruction. Twenty-five patients required subsequent operations for intestinal obstruction due to causes other than those directly related to the ileostomy. Sixteen originally had been operated on for chronic ulcerative colitis and nine for granulomatous colitis. Intestinal obstruction did not develop in any patient in the noninflammatory group. A total of thirty-four surgical procedures were performed, twenty-seven of which were for adhesions, five for repair of internal herniations (one through the pelvic floor and four through the mesentery sutured to the abdominal wall), and two for recurrent granulomatous disease. Healing of Perineal Wounds. In 332 patients, resection involved removal of the rectum. In all but six patients, abdominoperineal resection was performed. The six patients underwent total transabdominal proctocolectomy with removal of the rectum to the level of the levator muscles but the anus was left in place. In sixty-two patients (18.7 per cent) drainage from the posterior wound persisted for three or more months. The incidence was 23.7 per cent in patients with granulomatous colitis, 18.4 per cent in those with chronic ulcerative colitis, and only 8.7 per cent in those with noninflammatory diseases. Twenty-seven of the sixty-two patients (43.5 per cent) required various forms of surgical treatment to promote healing. In five patients such an operation was performed for drainage of abscesses when the posterior wound had been packed open to allow healing by granulation. Of possible significance is the fact that 75 per cent of the perineal wounds that failed to heal had not been closed primarily but had had posterior packs inserted. At reoperation excess granulation seemed to be the major problem encountered in most of these cases. On the other hand, when the posterior wound failed to heal satisfactorily, it was noted that in about 50 per cent, removal of the rectum had been performed in the presence of anorectal or rectovaginal abscesses and fistulas. However, such lesions were about evenly distributed among patients who had had the posterior wound packed and those who had had primary closure of the wound with drainage. With this latter Vol.

119, January

1970

TABLE

VII

Indications Turnbull

for

Revisions

Chronic

Indication

Brooke

and

Nonin-

lomatous

Colitis

Colitis

flammatory Disease

of

regional

6

enteritis

Fistulas Obstruction

3

9

10

3

1

3

2

2

6

1

Prolapse Retraction Porastomal Total

Cases:

Gronu-

Ulcerative

Recurrence

(343

Types)

hernia

1

1

number

23 (237*)

Per cent of ileostomies

of this type

1

22 (as*)

9.7

* Number

1

24.5 in each

5 (23*) 21.7

group.

method of treatment, 24.2 per cent of the patients had difficulties with healing and six of fifteen patients underwent subsequent operations for this problem. When the anus was not excised, four of six patients experienced troublesome, prolonged, and recurrent drainage. Ileorectal Anastomosis. In the group with inflammatory diseases forty patients had ileorectal anastomoses, thirty-one before establishment of an ileostomy and nine after various intervals with an abdominal stoma; twenty-four were in patients with granulomatous colitis and sixteen had chronic ulcerative colitis. In all of these patients, the diagnosis was verified by review of histologic specimens. In five of these patients ileorectal anastomosis had not been taken down at follow-up examination of six months and one and a half, two, three and a half, and four years, respectively. However, two patients had recurrence of perineal fistulas, and another with granulomatous colitis was in poor health with profuse bowel function and malabsorption. The causes of failure in ileorectal anastomoses are listed in Table VIII, which illustrates the high incidence of recurrent carcinomas in the rectal pouches of patients with chronic ulcerative colitis, the high incidence of fistulas and abscesses in patients with granuTABLE

Causes

VIII

of

Surviving

Failure

in

Ileorectal

lomatous Colitis

Colitis (I 6 patients)

Causes

patients)

6

5

Carcinoma

Pelvic

(24

Noninflammotory Disease

of primary

disease

Perineal

in

Granu-

Chronic Ulcerative

Recurrence

Anostomoses

Patients

of rectum*

2

fistulas+

9 3

abscesses

Anastomotic

stricture

Total * Includes + Anorectol

recurrent and

and

new

rectovaginal

2

3

14

21

primary

. 9

5

3

12

lesions.

fistulas.

81

Roy et al lomatous

colitis,

and

the

significance

of

recurrent

diseases as a cause of failure in both groups. The average interval before establishment of permanent ileostomies after a trial with ileorectal anastomoses was 3.1 years in the first group and 2.5 years in the second. This study does not include all patients in whom ileorectal anastomosis was performed but does include those in whom ileostomy was necessary at one time or another. It is significant that nine of twelve patients who had subtotal colectomy and ileorectal anastomosis for colonic carcinoma required subsequent resection and creation of ileostomies because of recurrence or development of new tumors. Seven of these were in patients with carcinomas developing in multiple diffuse polyposis, one in familial polyposis, and another as separate carcinomas which were resected over a ten year period. Urolithiasis. Efforts were made to determine the incidence of urolithiasis in patients with ileostomies. In 463 patients surviving operation and available for follow-up study, thirty-seven or approximately 8 per cent were known to have had problems with urinary calculi. Twenty-five had chronic ulcerative colitis, ten granulomatous colitis, and two noninflammatory diseases. Six of the thirty-seven patients, however, had calculi before undergoing colectomy and ileostomy. Difficulties with recurrent urinary calculi persisted in three of the thirty-seven patients during the first year after operation but they were subsequently asymptomatic for two years or more: one patient had renal calculi while he had a temporary “loop ileostomy,” but he has remained asymptomatic for ten years since he underwent definitive surgery; the other two patients, who had urolithiasis preoperatively, experienced recurrences four and five years later but have had no further trouble for three and six additional years, respectively. Calculi developed in most of the remaining thirty-one patients within one to three years after ileostomy was established. In only four patients did urolithiasis develop after surgery, at six, eight, Five patients nine, and twelve years, respectively. had a uric acid type of calculi but in the others the composition was not known. Evaluation

of Life with an lleostomy

The cases of all 344 patients (193 men and 151 women) who completed the questionnaire sent to them were reviewed in regard to each patient’s general health, habits of life, and ability to manage the ileostomy and appliance. This group comprised 250 patients with diffuse idiopathic ulcerative colitis, eighty-two with granulomatous colitis, and twelve with noninflammatory diseases. Since the various types of diseases for which surgery was initially performed did not seem to affect substantially the long-term evalua82

tion of life with an ileostomy

and the ability

to manage

it, all these patients were grouped together for the latter part of this review. The mean interval of follow-up study was 7.6 years and ranged from two to three years in sixty-three patients (18.3 per cent), to five years or more in 216 (62.8 per cent), and to ten years or more in IO5 (30.5 per cent). Table IX indicates the age distribution by decades at the time of the inquiry. On the questionnaire, 305 patients (88.7 per cent) indicated that their general health was good or excellent, thirty-six stated it was fair, and onlv three patients were in poor health. More than half the thirtynine patients whose health was not satisfactory attributed their conditions to causes such as arthritis. liver disease, peptic ulcer, hypertension, vascular diseases, multiple sclerosis, or simply “old age.” Of the total 344 patients, seventeen (about 5 per cent) blamed the ileostomy for their failure to be in perfect health. Two hundred twenty-six patients (65.7 per cent) enjoyed normal dietary habits without restrictions. Only five were following strict diets in order to maintain satisfactory intestinal function. One patient was taking drugs routinely to prevent excessive ileostomy drainage. Fifteen other patients restricted their diets because of overweight or because of other illnesses. Four patients reported that milk and certain other dairy products caused diarrhea. In the remaining ninety-three patients, dietary limitations were minimal and consisted in the avoidance of things such as nuts and popcorn or certain fruits and vegetables containing considerable acid, seeds, or fibers. A few patients reported having experienced episodes of partial obstruction of the ileostomy by undigested, coarse foods. No patient indicated the need for dietary supplements. Of the 344 patients, 312 had gained weight after their operation and thirteen had remained at a preoperatively normal weight; fifty complained of being cignificantly above their normal weight, and nineteen had lost weight. Inquiry was made into Management of Ileostomy. the difficulties of managing the ileostomies and appliances. When asked if either was a major problem, 290 patients (84.3 per cent) answered no and fiftyfour, yes. Most patients in the latter group explained that care of the ileostomy and appliance required too much time. Several were patients whose appliance necessitated frequent changing and cleaning, and among these were the patients who experienced difficulties with skin excoriations around the stoma. It was impressive to note that most patients considered management of the ileostomy a normal part of their “daily toilet.” In 168 patients, bowel function was such that the appliance bag had to be emptied two to four times daily and five to seven times in another I 10 The American

Journal

of Surgery

lleostomy patients. Because of the more abundant ileostomy drainage, forty-one patients or about 12 per cent emptied the ileostomy appliance eight times or more per day. Obviously, if significant amounts of small intestine had been resected because of involvement by the disease process or as a result of subsequent revision of the stoma, the discharge from the ileostomy tended to be more abundant. Most patients with this problem were in the group with either granulomatous colitis or ulcerative colitis who had been operated on for toxic megacolon and had previously undergone ileorectal anastomosis. In patients with noninflammatory lesions, the appliances were emptied an average of four to six times a day. Twenty-five patients did not answer this question. Ileostomies did not need special care during the night in 239 patients. However, 105 patients stated that the appliance frequently required emptying after they had retired and a few occasionally had troublesome experiences with soilage when they were asleep. In the majority these difficulties could usually be prevented by not eating in the evening and by cleaning the appliance immediately before going to bed or by rising earlier in the morning. A few patients used a different appliance during the night than during the day. Two hundred twenty-four patients (65 per cent) did not experience significant difficulties in maintaining the skin around the stoma in satisfactory condition. Occasional episodes of excoriations and soreness developed in thirty patients but were never serious and required only simple measures for adequate control. Ninety patients (26.2 per cent) stated that prevention or care of skin macerations was a major problem. Regarding experiences with ileostomy appliances, 280 patients (81.4 per cent) were still using the original, permanent type with which they had been fitted at operation several years earlier. Sixty-four had tried more than four models. The reasons for the preference of one model of appliance over another were never specific. Most patients, when well instructed in the management of the first appliance, continued to be satisfied with it, and many seemed to fear the experience of trying a different model. A few patients developed “patents of their own.” Ability to Work. Three hundred twenty-nine patients (95.6 per cent) returned to their previous employment after surgical treatment and, as mentioned by many, were more capable of working because of better health. Of the fifteen who did not return to their former occupation, five had retired. One worked part time and was receiving disability income because of his ileostomy. Only one patient stated that he was unable to get a job. The other patients had changed to easier types of employment. The vast majority of women resumed their normal occupations as housewives and most returned to occupations which they Vol.119, January 1970

TABLE

Age Distribution

IX

at Time of Follow-Up

Study

Patients

Age

(vd

Number

Per cent

o-9 10-19

13

3.8

20-29

48

14.0

30-39

70

22.7

40-49

02

23.8

SO-59

04

24.4

60-69

24

7.0

7Of Total

15

4.3

344

100.0

had had before operation. The occupations of patients are listed in Table X. As for the capacity to work, 287 patients (83.4 per cent) stated that they were not restricted in any way. Many, on the contrary, thought that their capacity was greatly improved. Restrictions in fifty-seven patients were usually in doing work that required lifting, bending, or pushing. A few patients were limited simply by a “lack of energy” or by associated illnesses such as arthritis. Social Activities. Patients were asked to evaluate the effects of the ileostomy on their ability to enjoy social and sporting activities. In such a group, many people naturally preferred sedate types of living. Nevertheless, 282 patients (82 per cent) stated that they enjoyed various types of leisure time activities, the same as most other people, and did not feel restricted by the ileostomy. The main reasons given by the sixtytwo patients who did feel restricted were the lack of adequate bathroom facilities and the fear of odors and noises from the ileostomy when they were attending public gatherings. A few also preferred not to travel because of a certain uneasiness experienced when they left the facilities of their own home. Three patients secluded themselves from social activities because they did not want their entourage to learn of their “infirmity.” One lady was “handicapped” by the fact that she could no longer wear “fashionable and exotic apparels.” Sporting activities were enjoyed fully by 166 patients, almost 50 per cent of the total group. More significant, however, is the fact that only fifty-nine ( 17 per cent) had discontinued participation in one or more sports. A few had given up such activities as camping, hiking, fishing, swimming, and bowling, but the vast majority of younger patients were restricted from sports such as wrestling, football, baseball, and other activities involving physical contact. All adult patients to whom Sexual Function. questionnaires were mailed were asked if the operation had in any way affected their ability to have normal sexual relations and to have children. Also they were asked if the ileostomy or appliance interfered with 83

Roy et al TABLE

X

Types

Occupation

of

Occupations

Held

Number

by

Patients

with

Ileortomy

Occupation

Number

laborers

21

Professionals*

36

Salesmen

15

Teachers

21

Farmers

15

Students

16

Administrators-executives

15

Secretaries

14

Merchants

9

Foremen-managers

a a

Clerks Truck

drivers

Stockbrokers

Technicians

5

Nurses

4

Clergymen

2

4

Actor

1

3

Sailor

Milkman * Includes two

Go-og thirteen

pharmacists,

one

engineers, architect,

seven one

1 dancer

physicians, chemist,

and

1

six lawyers, two

four

dentists,

accountants.

normal marital relationships. Of the 298 patients who answered these questions, 260 (87.2 per cent) did not notice any change in their sexual habits. The interpretation of the answers in such a group differed in that some patients qualified their answers with such factors as advanced age, death of a partner, divorced, or not married. More important, however, is the fact that many patients expressed their enjoyment of a significant improvement in their marital relations. Several patients were also known to have married happily after the operation. Twenty women, approximately a third of those who were married and in the childbearing age, became pregnant. There were thirty’five pregnancies, but five miscarriages. There were twenty-six normal deliveries and four by cesarean section. The reasons for these latter procedures were not given. Only one patient had episodes of intermittent partial intestinal obstruction during her pregnancy and required repair of a parastomal hernia after the delivery. Several men became fathers after total proctocolectomy and ileostomy. Thirty-eight patients stated that their sexual habits had been affected. Two of these had undergone removal of the rectum, performed elsewhere, and did not give the exact nature of their disabilities. In six other patients, the rectal stump had not been removed. Two of these were women whose impairment resulted from persistent and troublesome rectal discharge. Another stated that the stoma and appliance interfered with normal relationships. This was also the reason given by one man, but two others did not explain the nature of their problems. Thirty patients, twenty-one men and nine women, underwent proctectomy at this clinic. Their ages at operation ranged from twenty to sixty-eight years and eleven were in the fifth and sixth decades of life. Four men, ages thirty-nine, forty-two, fifty-three, and sixtyeight years, respectively, became impotent. Only one of them had had resection of the rectum for carcinoma. In the total group, sixteen men underwent protectomy for cancer. Three men were incapable of ejaculation. a4

Eight simply stated that their sexual function was veduced or “slowed down” and six did not mention the exact nature of their difficulties. Among the nine women, four had dysparenunia as a result of excesss scarring or failure of the perineal wound to heal normally. Two were impaired by the ileostomy itself and three did not mention any reasons. General Evaluation. In the questionnaire, 299 patients (86.9 per cent) indicated that their physical and mental health atid their social life had improved after colectomy and ileostomy. The main regret expressed by some was that the operation had not been performed earlier. Eight other patients considered their general health as being the same as before the operation. Two were in the noninflammatory group and the others had had difficulties for only brief periods before undergoing operation and seemed to compare their postoperative conditions to the state of their health before the onset of illness. Slightly more than 10 per cent (thirty-seven patients) stated that their condition had not improved. Again, five of these in the noninflammatory group and six with inflammatory diseases affirmed that they were living normally. The remaining twenty-six patients had other illnesses that interfered with complete rehabilitation, could not adapt themselves to living with an ileostomy and complained of being under constant mental stress, experienced sufficient restrictions physically, socially, or sexually to consider themselves disabled, or, after the initial operation, had undergone multiple surgical procedures for recurrence of the disease or for complications of the ileostomy. Patients were finally asked to give a personal evaluation of life with an ileostomy. Two hundred thirtyseven stated that for them life was absolutely normal in all respects. Eighty others lived normally but fiftytwo of them made reservations regarding certain inconveniences in having to care for the ileostomy and the appliance and twenty-eight of them considered their status of life as normal but had various degrees of disability from the physical, social, or sexual restrictions imposed on them. Critical analysis of the comments expresssed by all these patients led us to believe that 317 or 92.2 per cent were satisfied with their way of living and that their standard of rehabilitation could be judged as normal. Twenty-seven patients, however, noted that life with an ileostomy was a significant problem of adaptation physically and psychologically and most of them accepted it only as a “necessary evil.” Only four of the twenty-seven patients stated that life with an ileostomy was miserable and considered themselves crippled. Summary and Conclusions

Experience at the Mayo Clinic with the management and long-term follow-up study of 497 patients The American

Journal

of Surgery

lleostomy

with permanent ileostomies was reviewed. Of the 497 patients, 340 had diffuse idiopathic chronic ulcerative colitis, 118 had granulomatous colitis, and thirty-nine had noninflammatory lesions of the colon. Subsequent to various types of operative procedures, including creation or refashioning of ileostomies, twenty-eight patients (5.6 per cent) died in the immediate postoperative period. The mortality was 19 per cent for patients with serious complications of the disease and 3.3 per cent for elective cases. The overall operative mortality for one stage proctocolectomy in the last six years of this study was 4.5 per cent. The late mortality in patients with chronic ulcerative colitis in whom carcinoma had developed was 53.0 per cent but only 9.1 per cent in those without malignant lesions. Twenty or 18.2 per cent of the patients with granulomatous colitis died after dismissal from the hospital. Twenty-three of the thirty-six patients (63.9 per cent) with noninflammatory lesions but with carcinoma were dead at the time of follow-up study. The incidence of complications with the stomas was 9.7 per cent in patients with chronic ulcerative colitis, 21.7 per cent in patients with noninflammatory lesions, and 26.5 per cent in patients with granulomatous colitis. Recurrence of disease was an outstanding complication in this latter group. Difficulties with healing of the posterior incision were encountered in 18.7 per cent of patients and almost 50 per cent of these underwent further surgical procedures for this complication. A significant factor in failure to heal promptly seemed to be the fact that 75 per cent of the wounds had been packed open to allow closure by granulation. Ileorectal anastomosis proved unsatisfactory. A group of 344 patients responded to a detailed questionnaire and 88.7 per cent considered their health good or excellent. Management of the ileostomy and appliance was not considered a major problem by 84.3 per cent of patients, but 26.2 per cent experienced significant problems with soreness and excoriations of the skin around the stoma. Of the patients with ileostomies, 95.6 per cent returned to their previous occupation. Sexual habits were unchanged in 87.2 per cent of patients. Approximately a third of the married women in the childbearing age became pregnant, and most of them experienced normal deliveries, In patients who do not have major complications, total proctocolectomy and ileostomy for inflammatory diseases of the large intestine should lead to permanent cure and more than 90 per cent, with adequate guidance, can be expected to return to full, active, and productive lives. References 1. Brooke

BN: The management of an ileostomy; its complications. Lancet 2: 102, 1952.

Vol. 119,

January 1970

including

Turnbull RB, Jr: Management of the ileostomy. Amer J Surg 86: 617, 1953. Daly DW: The outcome of surgery for ulcerative colitis. Ann Roy Coil Surgeons England 42: 38, 1968. Daly DW and Brooke BN: lleostomy large intestine for ulcerative colitis.

6.

7.

8.

9,

10.

11.

and excision of the Lancet 2: 62, 1967.

Watts JM, de Dombal FT, and Goligher JC: Early results of surgery for ulcerative colitis. Brit J Surg 53: 1005, 1966. Watts JM, de Dombal FT, and Goligher JC: Long-term complications and prognosis following major surgery for ulcerative colitis. Brit J Surg 53: 1014, 1966. Janowitz HD, Linder AE, and Marshack RH: Granulomatous colitis: Crohn’s disease of the colon. JAMA 191: 825, 1965. Hawk WA, Turnbull RB, Jr, and Farmer RG: Regional enteritis of the colon: distinctive features of the entity. JAMA 201: 738, 1967. Lockhart-Mummery HE and Morson BC: Crohn’s disease (regional enteritis) of the large intestine and its distinction from ulcerative colitis. Gut 1: 87, 1960. Lockhart-Mummery HE and Morson BC: Crohn’s disease of the large intestine. Gut 5: 493, 1964. Turnbull RB, Jr, Schofield PF, and Hawk WA: Nonspecific ulcerative colitis. I. Introduction. Advances Surg 3: 161,

1968.

Discussion CHAIRMAN WELCH: Almost thirty years ago Dr McKittrick made one of the early studies on the long-term effects of ileostomy. It was rather surprising to note at that time the low incidence of suicide since prior to that time people regarded ileostomy with such horror that a high percentage of suicides was expected. RICHARD K GILCHRIST (Chicago, Ill) : I wish first to discuss pregnancy in these young women. Every woman we have operated on for ulcerative colitis, who has been married and wanted to have children, has had a child if she remained married a few years. Pregnancy is relatively simple. Obstetricians like having these women as patients because they simply require a deep episiotomy. Certain points must be observed to be sure that these women can become pregnant. One is to be sure that retroflexion of the uterus does not develop. Therefore, at the end of the operation the uterus should be suspended to the most distal part of the wound with two or three catgut stitches. Secondly, there must be a fairly good untraumatized perineal floor, and care must be taken not to traumatize the fimbriated end of the tubes or to bury the ovaries in scar. Perineal fistulas are sometimes a real problem. After having talked to a good many patients with little success, I finally had one young woman, a virgin, who we finally taught to massage gradually the back of the vagina. In about six months this loosened the tissue enough so that it healed very easily. We have since had one or two of these cases, and it certainly saves much trouble. We agree thoroughly with the idea of removing all of the colon including the rectal stump if it is diseased. If it is left in and the patient gets arthritis, it will have to be removed in a hurry. As a young man Dr David treated many of these cases. I could not understand why we had much less trouble than most until I realized that he cut off every ileostomy perfectly flush with the skin. These patients did not have 85

Roy et al as much inflammation as usually occurs when a long stump of ileum is left protruding. One real problem we have had in ulcerative colitis and ileostomy is that the anatomy of the patient (predominantly female patients) is such that it is pretty difficult to place the bag so that the little belt around the abdomen does not have a bowstring effect, pulling upwards. This will cause the bag to cut through the lower end of the ileostomy. I have not found a way to avoid this except to revise the appliance when this happens. Educating the patient is helpful. The long-term prognosis in ulcerative colitis is excellent. In our experience these patients have almost no trouble; however, we cannot seem to handle transmural colitis. Many of these patients are always troubled. With cancer of the colon our experience is that if cancer is found accidentally in the absence of symptoms, the prognosis is good; however, if the patient has cancer and it is diagnosed preoperatively, the prognosis is very bad. OLIVER H BEAHRS (closing) : From the favorable reports in the literature and the review reported recently by Dr Roy, those of us on the surgical services, including our

86

medical associates, are becoming more aggressive in the surgical management of ulcerative disease of the colon and certain other diseases of the colon. Total proctocolectomy for ulcerative disease is the preferred procedure, and in many respects it is the most conservative procedure in the management of these patients now that the problems related to ileostomy dysfunction and the establishment of an ileostomy have been cstablished. We consider resection and ileostomy for chronic or mucosal ulcerative colitis when tumor formation or complications occur or when the disease has been persistent for ten years more or less. Most often for granulomatous colitis or transmural colitis we recommend surgical treatment, and today we are performing conservative resections less frequently and total proctocolectomy with ileostomy most often. In so doing, most patients will be offered better health, more enjoyment of life, and less chance of recurrence. Very infrequently, and only in highly selected cases, are we preserving the rectum any longer. In this review, Dr Welch, there were three deaths due to suicide.

The American

Journal of

Surgery