What to expect when your child needs a stoma?
Not everyone knows what a stoma is. Let us explain what you need to know.
Finding out that your child needs ostomy surgery can be an extremely traumatic time for a family. It will be difficult to watch your child undergo the surgical procedures, even though you recognise that this may be the only option for your child to survive. It will also be a huge learning curve for you and your family as you will have to learn new skills to treat your child’s medical condition whilst at the same time juggling your own busy lifestyle.
It is important to remember though that help is at hand. Besides your child’s doctors, you can consult with Stoma Care Nurses (also known as Enterostomal Therapy (ET) nurses or Wound, Ostomy & Continence (WOC) nurses) who are trained to deal with all aspects of ostomy care. The following guidance will also hopefully be of some help to you in understanding your child’s condition and the issues you may face in the near future.
What is a stoma?
A stoma is an opening that is created to allow stool or urine to pass out of the body. Although more common in adults, it is not unusual for a child to have ostomy surgery. For some the stoma is carried out as a temporary measure, to allow the gut a period of rest and recovery, whilst for others it may be permanent, having been carried out as a life-saving measure. Some of the most common conditions that might necessitate a stoma are:
- Imperforate anus: where there is no exit for the bowel or its contents.
- Hirschsprungs disease: where nerves called the ganglion nerves are missing and waste matter cannot easily pass.
- Inflammatory bowel disease: this includes Crohns Disease and Ulcerative Colitis, both inflammatory diseases of the intestines.
- Neonatal necrotising enterocolitis: this occurs when a portion of the bowel is dead and cannot function and is most common in premature babies who weight less than 3 pounds at birth. In this case a stoma can mean life to a baby.
- Spina bifida: where part of the spine fails to develop properly and in more severe forms of the disease, the spinal nerves that control the muscles of the legs, bladder and bowels may be affected and a stoma needed.
After surgery, your child will pass stool/ urine through the stoma instead and will not be able to control when this occurs. To help with this a pouch is worn to collect the waste.
What does the stoma look like?
- Stomas will be a pinkish red in colour, similar to the inside of your mouth, and will be soft and moist.
- Do not be alarmed if your child’s stoma looks different from other pictures you may have seen as the appearance of the stoma will be unique.
- It is also common for the stoma and the area around it to be slightly swollen for around 6-8 weeks after surgery, after which the swelling will subside.
- Sometimes the stoma may bleed a little, for instance if brushed by a towel or dressing. This is entirely normal as stomas have a lot of blood vessels and the bleeding usually stops very quickly.
- Stomas have no nerve endings and therefore no feeling so it will not hurt when touched.
- Dependent on the type of stoma, it can be located on different parts of the body.
- Dependent on the type of stoma, the output will be different.
- The stoma may sit out above or be slightly below the skin level.
- The stoma may grow with your child, especially if it is permanent. It is important, therefore to re-measure the stoma from time to time to ensure that the pouch still fits correctly.
- At times when your child is crying you may notice a change in the colour of the stoma. However, the normal colour will return when the crying stops.
What types of stoma could my child have?
There are 3 types of stoma and the type of stoma your child has, will be determined
by the reason for the surgery.
This is the most common stoma type for a baby or child. A colostomy is an
opening made into the large intestine or colon. The stool can then pass from the
stoma out of your child’s body which tends to be solid in consistency but can
sometimes be liquid.
In an ileostomy the opening is made in the small intestine – the ileum. An end or loop of the small intestine is brought through the skin’s surface on your child’s abdomen and the output then passes out through the stoma. The ileostomy will resemble a ‘spout’ because the waste is more liquid. Due to the fact that ileostomy output contains digestive enzymes, this can be harmful to the skin and so requires extra care when pouching.
A urostomy is an opening made to divert urine from the bladder and also resembles a ‘spout’ as the output is urine.