Caroline Sanders BSc(Hons) RSCN RGN ENBA53 Urology Nurse; Pat Coldicutt BA(Hons) RSCN DPNS ENB 216 N100 Stoma Nurse, Alder Hey Children's Hospital, Liverpool.
Urinary abnormalities
Urinary abnormalities may be present at birth (congenital abnormalities). These abnormalities can lead to difficulties with continence and may require management with stomas. It is also possible that reconstructive surgery will be needed later in life.
Posterior urethral valves
Posterior urethral valves (PUVs) are situated within the posterior urethra (the tube that drains urine from the bladder to outside the body), and occur only in boys. They consist of mucosal folds, which cause an obstruction in the posterior urethra, and develop when the baby is still an embryo in the womb. PUVs develop very early in the pregnancy and may be picked up at the first routine antenatal scan. Urethral valves exist on a scale; the severity of obstruction is dependent on the stage of development at which the obstruction forms. Higher obstructions can lead to kidney and lung problems and sepsis (toxic infection). Lower, and less obstructive, valves can lead to a late diagnosis, with the child presenting with a history of incontinence and urinary tract infection. PUVs are the most common cause of lower urinary tract obstruction in male infants, with an incidence of between one in 8,000 and one in 25,000 live births. Children with this type of abnormality may need to have a vesicostomy (a stoma formed by surgery involving the bladder, see below) as a temporary measure until the baby has grown enough, or is well enough for the valves to be removed.
Neuropathic bladder
These conditions occur as a result of nerve damage to the bladder; this can be present at birth, or it can be acquired following injury to the spinal cord. Surgical treatments in children with neuropathic bladder include a vesicostomy, a urostomy (a stoma formed by surgery of the ureter - the tube that connects the kidney to the bladder), bladder neck repair and an artificial urinary sphincter (the ring of muscle at the bottom of the bladder). Intermittent catheterisation (the insertion of a narrow tube) is also often practised by children and young adults with nueropathic bladder.
Miscellaneous conditions
Other groups of children that may need a urinary stoma include those born with congenital cloaca (a condition in which the rectum opens into the genito-urinary tract); those with bladder abnormalities, or associated bowel problems; and children in whom an abdominal tumour has been removed.
Types of urinary stoma:
Vesicostomy:
Vesico means related to the bladder, and a vesicostomy is an incontinent bladder stoma. In this operation, the bladder is opened onto the abdomen, so that urine can drain freely from the bladder and out of the body. This procedure tends to be carried out when there is an obstruction or high pressure in the urinary system, usually as a result of a 'plumbing problem', such as the presence of PUVs or high-pressured neuropathic bladder. This type of stoma is often undertaken when a baby is small, and it can be closed at any age following correction of the original problem. In small infants a nappy can be used to hold the urine, but the position of the vesicostomy can sometimes be too high for this; in these instances, the urine does not drain into the nappy and the child gets wet frequently. If this happens, attempts are made to collect the urine from the vesicostomy in a stoma bag. Several child-sized bags are available (some with oval flanges); these need to be drained several times. A one-piece bag is often used in small babies. Overnight drainage bags can be fitted to the urostomy bags, allowing the urine to flow freely overnight, minimising the chance of the urostomy bag becoming dislodged during the night.
Common questions about vesicostomies
- Can I bath my baby?
Yes you can. Bathing your baby helps to keep the skin surrounding the stoma clean and prevents it from getting sore.
- Can water get into the little hole?
No, the opening that has been made prevents water from getting inside, and is perfectly safe.
- How do I get a urine sample?
A small catheter (tube) can be placed into the stoma to allow a clean sample to be collected. This does not hurt the baby and is done quickly.
- Does the stoma need a bag?
No, your baby's urine can flow straight into a nappy, but using a barrier cream on the skin around the stoma prevents soreness. It is also a good idea to put the nappy on back-to-front so that it covers the area where the stoma is situated.
Urostomies:
A ureterostomy is the procedure whereby the ureter is moved so that it opens directly onto the abdominal wall, rather than draining into the bladder, forming an opening through which urine is drained.
In an ileo-ureterostomy the ureter is joined to a small separate loop of ileum (bowel), which opens onto the abdominal wall. This type of stoma requires the use of a urostomy bag, and is becoming less common. Both of these are incontinent stomas, and use urostomy bags to collect the urine. Either one- or two-piece bags can be used, depending on the child's preference and on how well the bag can be fixed. Stoma paste and rings are also used as necessary to even out the surface around the stoma. As mentioned earlier, overnight drainage bags can be fitted to the urostomy bags.
Common questions about urostomies
- How often should I change the bag?
One-piece bags should be changed every day; with two-piece appliances, the actual bag can be changed daily and the flange can be left in place for three to four days.
- What can I do to help the bag feel more secure?
Empty the bag often; don't allow too much urine to collect, as the weight will pull the bag off. Make sure that the flange is cut to the correct size and is applied to clean, dry skin. Apply paste or wafers to the skin for extra security.
- Sometimes the urine looks cloudy and is smelly, what should I do?
Make sure that your child drinks plenty of fluids, especially water (cranberry juice has also been found to help). If your child is unwell and has a temperature they should have a urine test to check if any infection is present.
Mitrofanoff stoma:
This is highly different from the other urinary stomas as it is a continent (controlled) catheterisable stoma that joins the bladder to the abdominal wall and is visible as a small opening on the skin. With this stoma, urine is drained from the bladder several times a day by passing a catheter through the Mitrofanoff opening. This approach is becoming more common and is well accepted, often due to the fact that the stoma is small and does not require a bag. The stoma may not in itself make the child dry; other surgery may be needed to do this.
Common questions about Mitrofanoff stomas
- Will it hurt?
Using a catheter can sometimes feel uncomfortable, but children will get used to the new sensation. Trying different catheters often enables them to find a type that minimises any discomfort.
- Can my child go swimming?
Yes. Your child may wish to cover the stoma when he or she swims so that no one can see it, and so that it does not rub on swimwear, bleed or become sore.
- Does it grow and will it last?
The stoma is a living part of your child and as they grow it will grow with them. If they have one at the age of ten, by the time they are 20 it will have been catheterised more than 20,000 times!
Always carry a spare catheter with you and leave some at relatives' houses, at school or in the car. If you have any problems catheterising the stoma, try a smaller size tube and let the nurse specialist or the doctor know as soon as possible. Don't panic; if you can't catheterise - leave it for five minutes, then try again. If you are still having difficulties, contact the hospital.
Helping your child to cope
Always try to ask questions before the operation is carried out, to check that you understand what it will be like after surgery. Children often have fuzzy pictures of things; for example, one young girl thought that her stoma would look like a strawberry, and was pleased to meet someone with a Mitrofanoff and realise that it didn't. In children who are old enough to be able to understand what is happening it is crucial that they are given adequate information in a language they understand. They require honesty, time to ask questions, meet other families and to think things through. Play is important, and can help increase the child's understanding, reduce their anxiety and allow them to express any fears that they may have.
| Key points |
- Always try to ask questions before the operation is carried out, to check that you understand what it will be like after surgery.
- In children who are old enough to be able to understand what is happening it is crucial that they are given adequate information in a language they understand.
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