What will happen after the operation?
If your child has had the two or three stage pullthrough then you will need to learn how to look after the stoma. The biggest concern is that the stoma stays moist and red, showing good blood flow. To help you in this you will be allocated a Stoma Nurse who will teach you all you need to know. Stoma Nurses are a mine of information and will reassure you on any fears that you may have.
Once your child starts to pass motions this is normally the first step to recovery. The rate of recovery varies from one child to another. If your child's recovery seems slow do not despair, you will get there in the end. Usually your child will want to pass motions a lot more frequently than you expected, this is normal for this time. The motions may be watery and very acidic. This will lead to one of the most common problems where the bottom gets very sore. There are numerous barrier creams to help this. Again, speak to your Gastro or Stoma Nurse for help.
After the period of diarrhoea, there may be constipation. It is vital that this is looked at but do not worry too much if this occurs. Again it is not too uncommon and will pass.
Later, you may also find that your child has a problem controlling the passing of motions. Again this will improve in time but can be very distressing for both you and your child, especially in the older child.
Hirschsprung's children also tend to have lactose allergies but usually grow out of this. Some HD children do not put the expected weight on, again this is normal. Just make sure your child seems active and alert. You can discuss this with your surgical team if you have any fears.
What’s next for my child?
No one can say for certain what the future holds for your child. There is no set pattern of recovery from the pullthrough procedure. The good news is that around 80% or more of Hirschsprung’s children go on to have full control of their bowels and lead a very satisfying life.
A small percentage of children do continue to have problems and a second or third pullthrough may be necessary. This may be because there are still parts of the bowel that do not have ganglion cells. Why is this? To be honest sometimes there is no explanation. In very rare cases the ganglion cells may have breaks in them and when the original pullthrough was performed the biopsies were not taken high enough up the bowel to take this into account. This is still a little understood disease. Frequent advances are being made and our knowledge is advancing regularly. Because of this, you should firstly seek out an expert in this field. Do not get depressed when things do not go smoothly. There seems to be no standard progress for Hirschsprung’s children except that, in time, most get there. They grow into healthy adults and have families of their own, mostly HD free.