Whether your child is facing
an ostomy surgery or has gone
through one already, the best way
to eliminate your fears and regain
control over your child's life
as much as you can
is by educating yourself.
When a child is diagnosed with a chronic disease, changes occur throughout the family. Having a sick child is one of the biggest challenges that a parent can face. In addition to everyday care for the child and the rest of the family, parents are often dealing with overwhelming emotions related to the disease. Emotions such as fear and powerlessness manifest themselves differently in each individual, and dealing with them is particularly challenging in the context of family dynamics.
Whether your child is about to undergo an ostomy surgery or has already gone through it, the best way to eliminate fear and regain control over as much of your child’s life as possible is by educating yourself, finding out exactly what is happening to your child and how you can best help them. During your hospital stay, your doctor or stoma nurse will educate you on how to take care of your stoma, you will be visited by a health specialist when you return home, and Lentis support will be available to you at all times.
In this period, which is probably full of uncertainty for you, we will try to provide you with as much information as possible about various aspects of life with ostomy from the children’s and parents’ perspective. Although every child is different and their needs depend mostly on their individual diagnosis, your experience will probably be similar to that of other families in many ways. For this reason, it can be very useful to connect and share experiences with other families who can give you first-hand information or ideas on how to deal with specific situations.
Your own education will be twice as important as it will shape not only your decisions, but also those of your child. Once you learn important information, you will need to pass it on to them at some point, and your child will have to apply this knowledge in their own life.
You will have to choose at what pace and in what way you will present facts to your child. It is important that you do it in a way that it is encouraging and positive in order for them to accept the change and simple enough to really understand what you are saying. On the other hand, it is important not to simplify too much and not to omit important information to avoid putting the child at risk by handling their stoma inadequately due to ignorance.
To begin with, it is good to learn what kind of ostomy your child has, what exactly was done during the surgery, how their body has changed and how their digestive system will work in the future. You can find out more about this in the articles Ostomy and main types of stoma and Types of stoma and medical appliances.
Learning about living with ostomy is a time-consuming and above all a gradual process. During your stay at the hospital you will get acquainted with what a stoma looks like and how it functions.
Before and after surgery, try to take every opportunity to ask your health team everything you want to know. If something is unclear or has already been explained to you but you have forgotten, do not hesitate to ask for further clarifications as many times as necessary. You can also ask your health specialists to recommend brochures or additional literature on a specific topic you are interested in.
Lentis support is always here for you as well. You can subscribe to new content and you will receive notifications for every new article in our Knowledge Centre. You can also send us a request to receive our brochures Life with Colostomy, Life with Ileostomy, Life with Urostomy and Peristomal Skin Care and Nutrition with Ostomy. Simply send us an inquiry via this link and we will provide you with all available materials.
In the following part we will answer questions that parents often ask themselves immediately after the surgery.
DOES THE CHILD FEEL PAIN IN AND AROUND THE STOMA?
The stoma itself has no nerve endings and does not hurt. In the period after the operation it is often swollen, however, in the following weeks the swelling will subside, and the stoma will decrease to its normal size.
Although the stoma itself does not hurt, the skin around it can initially be sensitive and painful, which will also subside over time. Stoma hygiene and peristomal skin care are very important not only to avoid complications, but also to reduce pain. The less pain and discomfort your child feels, the sooner they will be able to return to their regular activities. It will also have a beneficial psychological effect on their mental state, acceptance of change and understanding that their stoma will in no way disrupt their life, play and all other activities that make them happy.
WHAT DOES AN OSTOMY SYSTEM CONSIST OF?
The ostomy system consists of a base plate and an ostomy bag. In one-piece systems, base plates and ostomy bags form an inseparable system that is replaced together, while in two-piece systems, the base plate and the bag are not a compact unit, and you can change them separately. Additionally, there are various types of base plates, zippers and additional care products that can help you apply an ostomy system.
HOW TO CHOOSE THE RIGHT OSTOMY SYSTEM?
In the hospital, your nurse will present you with a wide range of ostomy care products. Together you will choose the right products for your child, depending on the type and shape of their stoma and their skin type. You can try different types and brands of appliances (if for some reason they are not available to you in the hospital, you can request a free sample) and opt for those that best suit your child.
A nurse at the hospital will recommend you a system that they believe is best for you, and teach you and other household members involved in caring for the child how to handle ostomy appliances. Follow all the instructions you get carefully and follow all the steps when replacing the system as instructed by your nurse.
Give feedback to medical staff on how you feel with your ostomy appliances, whether you are satisfied with them or you are experiencing some difficulties.
Ostomy appliances should:
Ostomy appliances should not:
If you are not satisfied with your appliances, you have the right to request new ones or try out products of other producers. Should you want to try our appliances, find what you need under Products
In case the pharmacy or store is unable to deliver the prescribed appliance, they may offer you a generic medical device, but it is your decision whether to accept it or not.
CAN THE DISCHARGE OF STOOL/URINE BE CONTROLLED?
There are no muscles which we can control in the stoma, so it is not possible to control the exit of stool and urine. That is why it is very important to constantly have an ostomy system on, otherwise it may come to an unexpected discharge of intestinal and urine content.
HOW CAN YOU NOTICE SOMETHING IS WRONG?
The stoma should be round-shaped, red-pink and textured like the inside of the mouth since it is built of similar tissue. The stoma has a good blood supply, so it is not unusual to notice mild blood traces. However, if there is a slightly stronger bleeding, severe changes in the colour of the stoma, changes in the peristomal skin (redness, dermatitis, maceration), stoma retraction or separation, be sure to contact your doctor.
CAN MY CHILD EAT THE SAME THINGS THAT OTHER CHILDREN DO?
If your doctor has not advised you otherwise, your child can eat everything that other children can. Over time, you will notice which types of food affect the frequency, colour and texture of the intestinal and urine content. For more information about this, read our article Nutrition with ostomy, and per request you can also get our brochure on the subject.
ARE THERE ANY RESTRICTIONS WE HAVE TO TAKE INTO CONSIDERATION DURING PHYSICAL ACTIVITIES?
Your child can normally play, jump, run and crawl like other children. The only thing to avoid is contact sports such as handball, football, boxing, etc. in order to avoid strong blows to the abdomen.
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