Societies for Pediatric Urology Societies for Pediatric Urology
Dialogue Archives: Psychosocial Issues in CIC, Urinary Diversion and Undiversion
(Volume 6, Number 3, March 1983)


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Guest Editor: Katherine F. Jeter, EdD, ET Participants:
Thomas Bartholomew, MD                      Kathryn D. Clarke, BSN, MN
William E. Kaplan, MD                             Nancy Faller, RN, BSN, ET
Betty Broadhurst, RN, BSN, ET
Editor
Richard M. Ehrlich, M.D. Professor of Surgery/Urology; Co-Chief of Renal T ransplantation. School of Medicine, University of California. Los Angeles
Editorial Board
A. Barry Belman. M.D
Chairman, Department of Pediatric Urology Children's Hospital National Medical Center, Washington, DC; Professor of Urology George Washington Medical School
Donald B. Halverstadt, M.D. Clinical Professor of Urology & Pediatrics University of Oklahoma College of Medicine Chief. Pediatric Urology Service. Children's Memorial Hospital, Executive Chief of Staff, State of Oklahoma Teaching Hospitals, Oklahoma City
W. Hardy Hendren. Ill, M.D. Professor of Surgery (Pediatrics) Harvard Medical School, Boston Chief, Pediatric Surgery Massachusetts General Hospital
Panayotis Kelalis. M.D.
Professor and Chairman, Department
of Urology. Mayo Clinic, Rochester, Minn.
Selwyn Levitt, M.D.
Director, Division of Pediatric Urology Co-Director, Children's Kidney Center Albert Einstein College of Medicine and Montefiore Hospital, New York
Publisher
William J. Miller
Associate Editor
Jacqueline Nardi Egan
Lester Persky, M.D.
Professor of Urology
Case Western Reserve University
School of Medicine, Cleveland
Victor A. Politano, M.D. Professor and Chairman, Dept. of Urology University of Miami School of Medicine Miami. Florida
Edward Tank, M.D.
Associate Professor of Surgery & Pediatrics University of Oregon School of Medicine Portland. Oregon
Robert M. Weiss. M.D. Professor. Section of Urology Yale University School of Medicine New Haven, Conn.
Robert H. Whitaker, F.R.C.S. Consultant Urologist Addenbrooke's Hospital Cambridge, England Associate Lecturer University of Cambridge
SUBJECT OF CONTROVERSY: DIVERSION AND UNDIVERSION
EDITOR'S COMMENTS:
Katherine Jeter is a most remarkable woman. She is the "original" stoma therapist and one of the most active participants on the national scene promulgating the necessity of understanding the total patient and not just the ostomy. I have known her for many years and marvel at her drive, accomplishments and compassion Although this issue represents a departure from our more formal format, it is, nonetheless, important in its scope. We all look forward to the not too distant future when the pool of patients diverted for benign disease is exhausted and undiversion is a historical disease only Clean intermittent catheterization (CIC) has surely re-volutionized the outlook and lifestyle for the patient afflicted with a neurological bladder and it ranks high on the list of urology's most important advances. In my view, Lapides has not received enough credit for reinstituting CIC.
I could not agree more with Bill Kaplan and Kathryn Clarke regarding the necessity for the faithful follow-up by the patient to insure compliance with the procedure and I likewise concur with their plea here to develop better educational material and teaching aids. The emotional impact involved in reading a mothers opinion of CIC and a teenager's view on undiversion in this issue saddens me since it makes it all too obvious our relative neglect of the psychological and social implications of urinary diversion.
My congratulations to Dr. Jeter and the other participants for giving us a most interesting, informative and poignant issue. Richard M. Ehrlich, M.D.
Undiversion is the current favored topic for debate. We are shown smiling children with pronouncements that we are salvaging doomed renal function and improving the self-esteem of the youngsters by eliminating onerous appliances. Social scientists and their psychologists have long protested that one event does not alter self-esteem, rather it is a series of early childhood experiences that are the ultimate determinants of self-worth.
What continues to receive inadequate attention in these terse public discussions of urologic dilemmas are the experiences and feelings of the patients and families for whom treatment decisions are made. Lost among the impressive slides of improved pyelograms is the important consideration of the ages and stages of development of the children and the cognitive, socio-economic and cultural status of the parents. This issue presents a potpourri of opinions and experiences. It features 2 pediatric urologists, a visiting nurse, 2 El (enterostomal therapy) nurses, along with the interesting insights of a parent and 2 patients. From each, you will gain a slightly different perspective of the psychosocial implications of clean intermittent catheterization, urinary diversion and undiversion. It is clear that improved diagnostic procedures and improving surgical techniques are not the sole criteria in the decision-making process. We now acknowledge the importance of "patient selection" and a "multidisciplinary approach" but some of Mrs Broadhurst's and Miss Faller's experiences suggest that their inclusion in our discourse is more cliche' than practice in the management of pediatric urologic complexities.
I am particularly appreciative of the valuable thoughts articulated by the parent and patients who agreed to speak up in anonymity. Their varied opinions reinforce the need to devote time and resources to care for our patients with the same intensity we treat their disorders.I am also appreciative of the fact that Rick Ehrlich thought enough of the psychosocial considerations to invite me to do an issue on them.
Katherine F. Jeter, EdD, ET
Clinical Assistant Professor of Urology, Medical University of South Carolina; Adjunct Professor of Psychology, University of South Carolina at Union
YOUR RESPONSE
We'd like to hear from you and would welcome your comments, experiences, criticisms, etc. on the subject of this issue and other issues of this publication. Please send them to Richard M. Ehrlich, M.D., Division of Urology, UCLA Medical Center, Los Angeles, CA 90024.
GUEST EDITOR'S NOTES:
It is easy to oversimplify from the podium and dais. Time is short and there is much to cover In the late 1960s and early 1970s many of us spoke of the benefits of ileal conduit urinary diversion as a solution to troublesome urinary incontinence secondary to neurogenic bladder. It was an operation often performed for "social reasons." Patients were glad to be dry.
More recently audiences have been warned that nearly any solution to urinary tract dysfunction is superior to ureteroileostomy.
Despite early widespread skepticism, intermittent self-catheterization was touted by Dr. Jack Lapides. It continues to be advocated "on the circuit" by many who have 10-year statistics to substantiate their claims. There is no doubt that clean intermittent catheterization (CIC) is, for many patients, a satisfactory method of preventing renal deterioration and promoting urinary continence.
WILLIAM E. KAPLAN, M.D.
Assistant Professor of Urology; Director. Neurological Urology. The Children's Memorial Hospital, The McGraw Medical Center of Northwestern University, Chicago
KATHRYN D. CLARKE, BSN, MN
Maternal Child Health Consultant, Visiting Nurse Association of Chicago
CIC Compliance
The introduction of clean intermittent catheterization (CIC) for patients with neurogenic bladders has been one of the more notable contributions to urology. CIC can provide a valuable alternative to urinary diversion in terms of physical and emotional health. Studies have demonstrated a decreased incidence of stone disease and pyelonephritis in patients on CIC; obviously, the body image is better when a person is on CIC then when using a collection device. Despite the advantages, compliance with this procedure remains a problem.
As health care providers, we understand the physiologic and psychologic advantages of CIC but frustrations often arise when we have families who do not comply with this relatively simple procedure. To help circumvent future difficulties, all of the myelomeningocele team members and hospital staff who care for these children need to recognize the burden a prescription for CIC bears. A child with a neurogenic bladder usually has other physical abnormalities. The discussion of CIC may cause a resurfacing of many of the emotions a parent has about having a handicapped child, thus making the learning of a new technique at the initial visit difficult. Also, CIC often requires the guidance or actual performance of another individual every 4 hours to insure success. About 40% of the 800 or more children at the Spina Bifida Clinic in Children's Memorial Hospital are started on CIC when they are under 5 years of age. Obviously, the bulk of the responsibility for carrying out the CIC in these children falls on the primary care-giver.
The most difficult aspect of recommending CIC is the fact that the procedure requires a lifetime commitment and permanently alters the family's daily schedule. Immediate understanding and compliance, therefore, will not come from a hurried explana-tion, demonstration of the procedure, and a return appointment.
The initial presentation of CIC can make a critical difference in whether compliance is maintained. Discussions and instructions must occur in a quiet, private setting, where questions are encouraged. The child, the parents and any family members who will be involved should be at the meeting. Once some of the psychological and emotional issues are discussed, the family will be more receptive and better able to learn. During the instructions, the most important idea to
convey to the family is that "timing" is more important to the success of the catheterization than following every instruction detail. Studies have shown that the key to a catheterization's physiologic success is adhering to a proper time interval, not performing each small step exactly. Parents may state, for example, that they skipped a catheterization because they were "out of cotton balls." Obviously, the important point is that the child be catheterized on time, not whether the meatus is cleaned with a cotton ball or a napkin.
Once the discussion has taken place, instruction materials are supplied and the families are encouraged to call the nurse clinician and physician in charge whenever necessary. Knowing that the urology team members are available can be reassuring to a family which may be just starting to do the procedure, and may alleviate fears which arise over the years. For example, parents often call expressing concern about the color of the urine or if they find blood or mucous threads in the catheter. Simple fluid intake adjustments usually resolve these difficulties.
Specific early return appointments are made for all families to reinforce the initial procedures, and follow-up calls are made by the clinic coordinator or nurse clinician to insure return appointments.
If a family seems uncomfortable with the routine or procedure, r voiding diary may be helpful. The voiding diary is a preprinted form that indicates what time a catheterization is done, the volume of urine obtained, whether the child is wet or dry, the activity level, and fluid intake during the previous 4 hours. This is particularly helpful to families with multiple care-givers, or in families who give a vague history of catheteriza­tion timing and degree of incontinence. Once the technique is explained, it is crucial that the families remain compliant. Both hospital and community supports are essential. Support is offered not only by the urology team members through phone contact but also through other myelomeningocele team members and individual inpatient nursing staffs on the neurosurgery, urology and orthopedic floors. Most families have a primary nurse on each shift. Frequently, by the end of hospitalization, special close relationships have developed and may endure over the years.
After initial instruction, families return to the clinic 2 to 3 weeks later for a refresher course, jf needed, or merely for encouragement if progress is satisfactory. Return appointments are then made as needed. All patients are seen at least every 4 to 6 months. The families of all children on CIC have clinic appointments on the same day, so that the parents can share concerns and ideas. In addition, children are often formally grouped together so that they can teach one another the procedure, as well as stimulate pride in
SUBJECT OF CONTROVERSY: DIVERSION AND UNDIVERSION
staying dry. Community support can be offered through visiting nurse services and school nurses. Often, these health care providers are better able to evaluate the recommended program and to judge how conducive a particular environment is for compliance. Visiting nurses and school nurses can be included in discharge planning conferences with families who are particularly difficult
Recognition of noncompliance is often difficult and its signs may be subtle. Parents frequently provide health care professionals with the "right answers," though not necessarily completely accurate information. Even dry pants or diapers at the time of the examination are not necessarily an indication of successful CIC. Patients may change their clothes just prior to the examination to insure a favorable visit! More accurate information will be obtained if open-ended questions are utilized, rather than questions that can be answered "yes or no," or that give the correct answer within the question (ie , "You're cat hing yourself every 4 hours?"). Often the difficulties experienced by the family will surface during a more open-ended discussion. Physical signs or symptoms that persist can suggest noncompli­ance (ie. urinary tract infections or rashes in the perineal area).
Because of the relative ease of instituting this procedure and the known advantages of CIC, the importance of continuing to develop educational techniques and methods of monitoring patients cannot be overemphasized. The program's success depends greatly on how much energy health professionals expend in teaching and supporting the CIC patients and their families.
A Satisfied Mother's Opinion of CIC
By the time our daughter Sarah was a year old, we realized urinary tract infection was an unavoidable part of her life. Born with spina bifida, she had numerous urological problems. We had tried suppressive antibiotics but she still developed infections not sensitive to that particular medicine. We also tested her urine at home on a weekly basis, hoping to pick up an infection before it had progressed enough to damage and scar the bladder walls. After a few infections, with fever and vomiting, we decided to begin the catheterization program. As awful-sounding as it was, I knew we had to change her bladder management.
The teaching process, demonstrated by a nurse, was direct and simple. I left the session confident that I could catheterize my child on a 4-hour schedule. Looking back, I realize that the teacher's attitude toward the procedure greatly affected my attitude of competency in performing the task. I was further amazed at how easily my daughter and I
both fell into the 4-hour routine. She squirmed some at the beginning but soon she was through it and on to something else.
That was 6 months ago and I cannot possibly imagine a disadvantage that could dim the fact that we have been "infection-free" since then. As our daughter will need to continue the catheterization program, I believe beginning the program early in her life will make her more acceptable to the process as being part of "her" day. It has been a great help for our daughter's grand-parents and special friends to learn, and in so doing, tc realize more about that special problem of Sarah's handicap.
I have to interject here a personal note to doctors to encourage parents to try the program. Whatever time and effort are involved are well worth it for economic and health reasons.
THOMAS BARTHOLOMEW, M.D.
Spina Bifida Evaluation Center, Santa Rosa Children's Hospital, San Antonio, Texas
Getting the Family to Cooperate
There are many families that do not perceive the Clean Intermittent Catheterization techniques as altogether effortless, simple and benign. Everyone involved in CIC programs has learned the hard way that what is "minimal" to the medical staff may be overwhelming to some of our patients' families. The level of sophisti-cation needed to insure dependable catheterization is not always adequate in some homes. Temporary problems can be expected in almost all families. Initially, most parents presented with the concept of CIC will have an appropriate concern over what physical damage can be done by the catheter. A degree of fear or distaste for genital touching is not unusual. Frustration with the mechanics of catheter-ization is also common. These are the anticipated rough spots that eventually, in time, will work themselves out.
There can be more severely limiting social handicaps that must also be recognized. In many parts of the country, families travel a great distance to see the doctor. Some may come from towns where English is not the common language. Church and school customs and family life make CIC seem too unusual to be readily adopted on a day-to-day basis. Certain fears and myths may exist about the consequences of genital manipulation. Single parents, no parents, physical, intellectual or emotional disabilities in the other family members are often stumbling blocks for a CIC program. If unrecognized or ignored, these realities of life may render CIC impossible. Our experience at the Spina Bifida Evaluation Center in our hospital moved us to develop a series of
techniques to recognize and deal with these needs. CIC is discussed as a future option in our first consultation with parents of a newborn with spina bifida. If their urologic "health" is otherwise unsatisfactory, our policy is to keep the children in diapers until they are 3 or 4 years of age. But parents are made aware of the CIC option early so that they will not be confused by the concept when talking with other parents of spina bifida children. They will also be comfortable in discussing it further as the child grows The most essential tool in our approach to CIC is the bilingual patient-advocate nurse coordinator. She introduces the technique in a "hands on" session with parents and serves as a resource whenever concerns arise. Much time is spent in her family evaluation so that all areas of potential difficulty are recognized. Such a source of confidence and competence is most critical when this somewhat frightening and strange procedure is undertaken.
Our philosophy has been to make CIC as simple and safe as possrble. To be satisfactory, CIC must find a place in the family's home and school schedule. We emphasize that CIC is a lifelong plan and that regularity is of utmost importance. In this orientation, we routinely recommend a 4-hour schedule during waking hours. We feel that other family needs make a more frequent schedule intolerable, and nocturnal enuresis is more acceptable than waking the parents and the child during the night.
We have also prepared a simple handout or procedure manual for home and school use when CIC begins. It describes the rationale for CIC and shows, via diagrams, the steps of the procedure. There is also a glossary defining the terms used in the manual. In addition to the written procedure manual, we have produced a slide series which shows catheterization performed on several of the children in our clinic. The presentation reviews adult catheterization of small boys and girls and self-catheterization by older children.
Heeding advice from doctors and nurses can be difficult when great differences in cultural origin exist. Spina bifida parent group members are indispensible then in promoting successful CIC. There is no substitute for the encouragement available from parents of a spina bifida child who have learned themselves to practice CIC. Advice from another parent is uniquely useful. We are grateful for an active and committed group of parents. They routinely participate in clinic meetings and in our postclinic coordination conference, offering insights that the "professionals" have overlooked. Also, parents' groups have had an important influence on school policy and legislative support of CIC programs We will teach CIC in an inpatient setting when a family
lives far away or they have had unhappy experiences performing CIC resulting in bleeding or infection. These families appreciate the security of the hospital setting where they can practice CIC under the eyes of nursing personnel. This inpatient teaching has been used rarely but it has made successful CIC possible in selected patients.
Psychological testing has given us useful information in certain problem cases. This has usually been in adolescents who cannot seem to perform CIC successfully or consistently. We have found reduced intellectual skills, and especially impaired eye-hand coordination, in children with spina bifida. Their poor eye-hand motor skills may well arise from their lifelong dependence on the social and verbal skills. Hydrocephalus-associated paraplegia does affect motor tracts adversely earlier and more severely. This combination of tactics has been rewarding. Our initial frustration has changed to enthusiasm in most cases. The coordinated efforts of urologists, nurses and the families are essential in all communities, but especially when the population regards the sophistication for CIC as foreign. Our broad-based, multilevel program has eased this passage.
NANCY FALLER, RN, BSN, ET
Vermont Achievement Center, Rutland
Pitfalls in CIC Teaching-Learning Process
1 would like to cite several specific cases that illustrate the overlooked components of the teaching-learning process in the CIC procedure:
Mary called inquiring about urinary diversion, which she hoped would free her of infection and incontinence problems. When we saw her, we discovered she had been started on a CIC program that required her to use
2 special cleansing agents and a mirror in a semi-recumbent position. She also had been instructed to boil her catheters. The procedures kept her nearly housebound. When she did leave home, she increased the time intervals between catheterization because the process was so complicated. This led to bladder distention and recurring urinary tract infections. These problems convinced the patient that the program was a failure. As Dr. Kaplan and Dr. Bartholomew point out in this issue, the emphasis must be placed on regular bladder emptying, not on the cleansing technique. When Mrs. B. returned to the clinic for her first appoint-ment after her child had begun a CIC program, the staff was surprised by her anger. When they spent time getting to the source of her resentment they found that Mrs. B., like many parents, saw this new procedure as yet another malfunction in an already multiproblem child. In the spina bifida population, the need for orthopedic and neurosurgical intervention is apparent, but renal compromise is not as obvious. Initially, she
SUBJECT OF CONTROVERSY: DIVERSION AND UNDIVERSION
had been shown her daughter's IVPs to help her visualize the physical problems; but she felt that insufficient attention had been devoted to her frus-tration and resentment of another treatment she was required to perform. When parents begin a CIC program on such a negative note, their attitude is conveyed to the children. Thus, their cooperation is jeopardized.
Jennifer was admitted to a pediatric ward for scheduled surgery. Her mother was surprised when a nursing instructor admonished a student nurse for inserting an unsterile catheter in the child's bladder Jennifer's mother interpreted this as a reprimand for the way she was performing CIC and felt guilty until the situation was unraveled. It is imperative that we warn parents that not all our colleagues in medicine and nursing realize that catheterization is safe under less-than-sterile conditions.
Mrs. T's pediatrician blamed her for her son's urinary tract infections. He knew nothing about CIC and assumed that the mother's careless technique was the reason the child was infected. It is important to have personal contact with the children's pediatricians to review the rationale and goals of the program. This is also an opportunity to advise them of the correlation between constipation and UTIs so they will reinforce the importance of maintaining a satisfactory bowel regime.
April could not understand why she had to leave her catheter in the nurse's office at school because she had always carried it in her pocket. When the girl's mother brought the problem to our attention, we called the school nurse, explained the protocol and sent her a packet of literature. Had we telephoned before April entered school, we could have avoided further trauma to an already-stigmatized child
When the child is not independent in his or her care, and the school nurse is well-informed, she can be instrumental in recruiting and training other helpers to take over during the school day or when the nurse is not on duty.
Mr. and Mrs. V's refusal of their son's hospitalization for a urodynamic work-up was a direct result of the meningomyelocele team's failure to communicate between disciplines. His parents were tired of repeated separations from their child, who has only recently left the hospital after an orthopedic procedure. The GU work-up could have been accomplished during the same admission had the staff coordinated their plans. The parents would have been happier and definitive therapy would not have been delayed. Leslie's mother gave up plans to return to work to supplement the family's income because while the child's babysitter was satisfied with the diapering method, she was frightened by the proposed require-
ment to insert a catheter into the child's bladder every 4 hours. Had we spent more time initially with this mother, we could have anticipated the need to include the sitter in the teaching sessions. It is ideal for a visiting nurse to go into the home to review the program with the child's other care-give"rs. When this is impossible, they should be encouraged to come into the clinic for instruction and practice until they are comfortable with the procedure. Paula exemplifies the importance of continuing reeval-uation of the patient's CIC program. Despite our good intentions, parents do not always hear instructions the first time and/or change the procedure as they see best. Paula had been taught a relatively simple program; but her father, a urologic nurse, felt it would be safer to have her soak the catheters in Cidex. That was how he cleaned the urologic instruments in his office but he didn't realize the long-term implications of repeated contact of the urethral mucosa with a chemically impregnated catheter. It is well and good to speak of the teaching necessary for a successful CIC program; but so often it is the little omissions that lead to misunderstanding and dissatis­faction. Unless all these details are considered in our planning, this significant advance in managing the myelodysplastic child may be wasted.
A Young Woman's Response to Ostomy
I was born with spina bifida and had no bladder control My parents took me to various doctors who had e variety of ideas on how to "train me." Evening liquids were withheld. I sat on the toilet every 4 hours, day and night. I spent hours scrubbing my own diapers in the basement. These were specialists' ideas, not my parents. Meanwhile, I spent all those years being taunted by schoolmates because I "stunk" and always had "wet pants." I don't know how I ever survived it emotionally.
As I became a teenager, my parents were threatened with the prospect of radical surgery. My poor parents couldn't bring themselves to proceed with such a course. And I went through high school without ever having a "Homecoming" date. I knew I couldn't go to college in diapers. I then learned that the "horrible" operation was an ileal conduit which was making a whole new life possible for many people and was in no way disfiguring or hindering. After the surgery, I finished college and soon fell in love with a wonderful guy. I was scared to death to tell him about my ostomy and appliance. When I did, his reply was, "I have something to tell you; I have false teeth." We have been married 5 years and are expecting our second child. My happiness compels me to urge parents not to consider surgery, such as an ileal conduit, as a "last resort" punishment for a child whose
central nerves are damaged and will never be regenerated. And parents, do not wait until "something better comes along" as specialists so suggested to my parents 20 vears ago.
BETTY BROADHURST, RN, BSN, ET
Clinical Instructor, Valdosta State College. Valdosta, Georgia Problems with the Procedures With the advances in reconstructive surgery and the use of CIC, the need for definitive urinary diversion in children has declined. However, there still are a number of infants and children who will require temporary urinary diversion. The type of cutaneous diversion is extremely important and should be considered in the context of the children's ages and stages of psychosocial development When urinary diversion is performed on a newborn or child younger than 3, the urine collection can be accomplished satisfactorily with diapers. The diapers may be worn in the usual fashion, or wrapped around the abdomen to absorb the urine with another in the usual position for stool. Any type of diapering is unacceptable, however, for the school age child. A pouch should be used to achieve continence once children reach the age when toilet-training would normally have been completed The procedures more suitably adapted for pouching are the intestinal conduits and the abdominal ureterostomies. The stoma is in the child's view and self-care can be taught when the child is older. Carefully selecting the stoma site prior to surgery enables the placement of an appliance where it will stay for 1 to 3 days without leaking. Flank ureterostomies and vesicostomies are techni-cally less complicated to perform, but they cause pouching difficulties that may interfere or delay the child's social and sexual development. Two school age children who underwent cutaneous vesicostomy merit discussion here. The first is a 9-year-old girl who has been treated for recurrent UTIs since early childhood. She has chronic renal insufficiency secondary to bilateral reflux. The child underwent bilateral ureteral reimplants at the age of 6. She and her parents were instructed in CIC, but a conflict arose between parents and child which led to its discontinuance. At 6V2 years of age, additional work-up revealed chronic pyelonephritis and dilatation of the ureters. Bilateral nephrostomies were performed. Ultimately, a vesicostomy was done when she was 9. The second child is a 6-year-old boy who has been treated for symptomatic urinary tract infections since the first year of life. Work-up revealed a left pelvic kidney, left reflux and right hydroureteronephrosis. Bilateral tapering reimplants and a bladder myotomy were performed at the age of AV2. Follow-up x-rays
showed progressive dilatation of the upper tract and 4+ bladder trabeculation. At the age of 5 the boy underwent urodynamic evaluation. It was felt that delayed-emptying and elevated bladder pressures were the result of a small capacity neurogenic bladder. The child and his parents were instructed in timed voiding, every 1 to 1/2 hours, instead of CIC. Lack of compliance resulted in continuing UTIs. A vesicos-tomy was performed at the age of 6. Prior to their vesicostomies, both of these children were below the 5th percentile in height and weight for their age. After their surgeries, both continued to have UTIs, but their overall physical status improved as evidenced by healthy height and weight gains. Despite their physical improvement, however, they have had emotional setbacks. Both children have stomas that are difficult to pouch because of their location. They fear that the appliances will leak and are bothered by continued wetness. Their fear of being ridiculed for wetting has caused both to participate less in social activities and to skip school. It is in the school age period that children develop a sense of industry and self-worth. They achieve this by participating in work, play and other interactions with their peers. Body image and self-concept are fluid in this period and alteration of body function make them feel different and, sometimes, embarrassed. School children are frequently cruel in their honesty as they question or jeer at a classmate with a limitation or disability. Absence from school leads to loneliness, rejection, delay in academic progress, poor grades, and, sometimes, repeating a school course. On occasion, psychosomatic pains also complicate the picture.
Such a cycle is hard to break. Both children continue to have appliance problems after 2 years. Weight gain has exacerbated the pouching difficulties. Eventually, with much time and painstaking effort on the part of the ET nurse and the children's mothers, a 24-hour pouch seal has been achieved. Both children feel more secure and are slowly returning to school and other activities. Yet, certain activities are permanently curtailed because of the location of the ostomies. Taking into account some of the problems of managing a vesicostomy, it is best to restrict this procedure to infants and young children who would normally be wearing diapers and for whom incontinence is not a social issue.
A Teenager's Views on Undiversion
For 2 years prior to undiversion—the span of time since the option had first been presented to me—I considered all the pros and cons necessary to make such a decision. I have discovered that my life has had no dramatic changes as a result of that
SUBJECT OF CONTROVERSY DIVERSION AND UNDIVERSION
decision—at least not in terms of lifestyle. The impression I first got from the doctors was that they were more interested in removing the "bag," just to remove the bag, than in improving my health. With the completion of what the surgeons finally admitted was a "cosmetic reconstruction," I found that my failing kidney function had become more of a stumbling block to good health than I believe my ostomy ever was.
Although I agree that the reconstruction will, be helpful in the case of a transplant somewhere down the line, I found the surgeons more interested in telling me my body image would improve 100% rather than giving me the true, harder-to-swallow medical facts about the surgery. There are several "cosmetic" benefits of the reconstruction; but those sometimes seem negligible compared to certain periods of overwhelming fear I have experienced since the surgery. The pluses: I can sleep on my stomach. I can undress in a public gymnasium without having to respond to questions and sneers from a curious bunch. I have no more equipment (appliances, night-time drainage units and so forth) that must be toted from place to place. That is a great convenience and it saves money, as well. I have an unbelieveable outlook on life and my body image is not changed entirely!
Perhaps the reason I thoroughly enjoy my life—much more so than before undiversion—is due to the "minus" that came with it: my kidney function diminished. My creatinine clearance slipped from 28 preop to a scary 19 postop mark. At one time during the year, I so feared for my life that I spent an hour crying that I was going to lose it. That hour, I believe now, was wasted and time is much better spent these days. About those "cosmetic" promises —the surgery changed my lifestyle very little but it managed a major facelift of my life's attitude. It is important to note here that I would have never opted for reconstruction under the following circum­stances: 1)lntermittent catheterization. The doctors promised convenience and I do know that CIC is not a convenience. 2) Prior to the undiversion, I had assumed that my kidney function would remain relatively stable for at least the next 15 years; that is, I did not believe I would require a transplant in the immediate future. If the surgeons had told me the reconstruction would decimate my kidney function, I would have politely declined the operating table. As it was, however, I was told the surgery would not worsen my kidney function and that a future transplant would be easier without an ostomy. Doctors said my ileal conduit promoted calculi and a reconstruction would help obviate the chances of a
stone that might prove lethal. 3) I would not have opted for the surgery unless I had been guaranteed the renovation of a 20-year-old surgical hernia on my abdomen. The hernia was repaired, somewhat, but I realized later, "What good is cosmetic surgery when your stomach and flanks are decorated with numerous scars!"
Perhaps, I never fully understood all the things the medical profession was trying to tell me while I was trying to make such a momentous decision. But, in answer to the most banal of questions: "Yes, I would request the surgery if I had it to do all over again." I have an Outlook on life now that I would have failed to see had I not had the surgery. By the time I was 19, just before the reconstruction was offered to me, my ostomy was becoming somewhat of a nuisance in the shower, on the athletic field.and around the dance floor. In addition, I had become so irresponsible during my college years that I often failed to take the proper hygenic precautions!
When the chance for the reconstruction presented itself, I accepted for what I still believe is the major reason: a new body was simply a change, a ticket to adulthood from the increasingly stale world of a waning adolescence. The surgery did just that for me.
The reconstruction complications gave me a good handle on myself. Emerging from the typical -adolescent insecurities, the patient who came out of that operating room 2 years ago was one who could handle just about anything. That belief still gives me a feeling of purpose, a reason, and a drive for my burgeoning journalistic career, as well as a reason for being and a reason why I must be the best I can be in whatever amount of time I have left here.
WHAT'S AHEAD
Here are some of the topics which will be discussed in
the upcoming issues of Dialogues in Pediatric Urology
and the Guest Editors of these issues:
Posterior Urethral Valves
(Guest Editor: Bernard M. Churchill, M.D.)
Psychologic Timing of Genital Surgery
(Guest Editor: Jeffrey Wacksman, M.D.)
Cryptorchidism
(Guest Editor: Faruk Hadziselimovic, M.D.)
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Copyright © 1983 by William J. Miller Associates, Inc.
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