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Short Bowel Survivor & Friends

Frequently Asked Questions

Here are some of the questions frequently asked by parents of children with SBS.

If you have a question to ask, you can contact us here on the pink contact form below. Your question will be answered by either a qualified person or a parent with more experience.
Alternatively click the Facebook link on our home page, where you can chat to other parents.

What is the function of the bowel?

The main funtion of the bowel is to absorbe nutrients from the food that has been eaten.
The lining of the bowel contains tiny cells or 'villi' that extract all the nutrients, vitamins and minerals from food so if the bowel is shortened for any reason there will be less cells
and therefore less nutrients will be absorbed.
 
How long will it take me to learn to administer PN?
That depends to some extent on how quickly you pick up on new ideas and skills. You will be trained on the hospital ward at first - there is no rush take as long as you need. The hospital staff will want to be sure that you are safe and confident before you take your baby home on PN. You will always have someone to contact for help and advice when you are at home.

Who supplies all the PN equipment?

This is supplied by a company called Calea you will be given all the information that is needed by the staff on ward that you are discharged from. Calea deliver your PN each week and you are given a fridge to store this, you are also given all the equipment needed to administer it. The PN is made up from a prescription specifically tailored to meet the needs of your child.
Calea’s web address is www.calea.co.uk.

Is there any extra support I can get i.e. financial or other?

For people on HomePN - financial support would include benefits such as DLA (Disability Living Allowance), Carers Allowance, Child Tax Credits. You can contact CAB (Citizens Advice Bureau) to help you claim these. Another source of financial help is Family Fund see Help & Resources page in the menu here for more information.
For other practical support there are organisations like Rainbow Trust, that can offer support by giving you time out while they play with your child or take them out on short visits. There are also Respite Care Centres to give parents a break.(see links page in the help section of this site) The Community Nurses can also help. The hospital and Health Visitors will also advise on all of these.

How long will my child be on PN?

The length of time a child remains on PN will vary according to their condition. Every case is different as SBS has many causes. Some children are born with a short bowel, others have short bowel resulting from life saving surgery to clear a blockage or when the child is born with the intestines outside the body( gastroschisis). Every effor will be made to keep the period of time as short as possible to reduce the possibility of liver damage and also to reduce the risk of line infection.

What is the procedure for bowel lengthening?

Bowel lengthening is a procedure first developed by Mr Adrian Bianchi in the 1980's. This website is named after the survivor of that first operation - Louise, who is now a mum herself. She works full time and leads a very normal life. There have been many advancements made to this proceedure over the years, which sometimes includes a 'step' method which both lengthens and tapers the short bowel, making it function more efficiently. At Manchester Childrens Hospital, Mr Antonino Morabito a Neo-Natal Surgeon specialises in Bowel Lengthening Surgery. You can find out more information on this site just click - Treatment - Dr Moribabito.
 
My child won't eat - what can I do?

The first thing to do is stay calm. Try to look at it as a long term process and offer tiny amounts often. Maybe start with what are known as 'mouth swipes'. This where you put only a tiny amount of food spread across your child's lips for them to lick off. You may need to do this many times before they beome accustomed to the taste. Take care not to over face your child. What looks like a small amount to you, may in fact too like a mountain before their eyes. Remember you can always offer more when they have eaten what is there. Speak to the Dietician or Speech Therapist if the problem persists.

Will my child ever be able to have a normal diet and eat all kinds of food?

It is difficult to say if, or when a child suffering from SBS will be able to eat all kinds of foods. One thing is certain and that is every child should be encouraged to drink and take some kind of food where possible, even if they are on PN and or a gastostomy feeds.
The Doctors, dietician and nurses at the hospital will guide you through step by step towards normal feeding. It may be that there will be some restrictions like needing to be Gluten- Free or Lactose-Free. Every child is different so don't give up hope!! Contact some of the mums on our facebook site to see how they managed.

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