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Colostomy, Ileostomy, Urostomy and Vesicostomy

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This information sheet is an introduction to having an ostomy, and should be used as a brief guide to having a stoma, or ostomy.

“Stoma” simply means opening. A stoma allows access to the bowel or bladder via an opening on to the abdomen. The contents of the bladder (wee) or bowel (poo) then empty into a special bag that sticks on to the abdomen (tummy), and fits around the stoma. This is emptied or changed regularly as necessary. A stoma is one way of managing continence, but usually other methods would be tried first. Stomas may be temporary or permanent.

Colostomy

A colostomy is where a small part of the colon, or large bowel has been surgically diverted onto the surface of the abdomen. The waste passed is usually fairly solid. This is the usual type of bowel stoma seen in neuropathic conditions such as spina bifida. A neuropathic bowel is one where the messages sent from the brain to the anal sphincter are not received because the network of nerves (the spinal cord) is damaged. This can be a very good 
method for people to manage their bowels independently. Particularly if care issues pose a challenge.

Ileostomy

An ileostomy is where a small part of the ileum, or small bowel has been diverted on to the surface of the abdomen. An ileostomy will work more regularly and the waste will be more fluid. This type of stoma is less common in neuropathic conditions such as spina bifida.

Urostomy

A urostomy is where the ureters, the two small tubes that drain urine from the kidneys to the bladder, are diverted onto the surface of the abdomen. These tubes are so tiny that they have to be transplanted into a small piece of bowel which forms the stoma. The urine drains continuously into a special bag (appliance) which is then emptied regularly.

Vesicostomy

A vesicostomy is where the bladder is diverted through a small opening directly onto the surface of the abdomen. This operation is only carried out in babies where the kidneys are under pressure and at risk of damage. A bag is not necessary because the urine drains straight into the nappy. This is always a temporary stoma.

Preparation for surgery

People undergoing surgery to form a stoma will need some preparation before the operation. This will depend on the type of surgeryand the consultant carrying out the operation. You should expect to be able to discuss the surgery fully beforehand and ask any questions you may have. You should be introduced to your specialist stoma nurse who will be supporting you and will explain what will happen during the hospital stay. This nurse will teach you how to look after your stoma before you go home, and will make sure you know who to contact if you need help or advice after you go home.

After surgery

Some food and drinks may cause excess wind or looser motions. You may need to experiment and find out what affects you. It is best to eat a normal diet if possible.

If you have an ileostomy, some foods can cause a blockage if you don’t chew them well. You may need to avoid pulses, dried fruit, nuts, coconut, and popcorn. Some foods like tomato skins and pips may pass into the bag unaltered. You can ask your stoma nurse for a diet advice sheet.

If you had a urostomy, you must make sure that you drink enough liquid. Drinking cranberry juice is helpful in preventing infections. However, it is not recommended if you take blood thinning medications such as warfarin or coumadin. Some foods like beetroot may colour your urine, but won’t cause any harm.

Looking after the stoma

Whilst you are in hospital, the nurses will teach you to look after your stoma. They will teach you how to empty and change the stoma bag and how to care for the skin around the stoma. There are many different stoma bags, and your stoma nurse will help you to find the one that is best for you. Your nurse will also explain how to store your stoma bags at home, and how to dispose of them.

You will be given some bags to take home, and after that, further supplies are available on prescription. You can then get the products from your local chemist; or you can use a home delivery service if you find it more convenient. This service won’t cost you anything.

You won’t have to pay prescription charges for stoma products, but if you are over 16 years old, or under 60 years old, you will need to apply for a Prescription Exemption Certificate. You can get a form to apply for this from your doctor or chemist.

If you have a stoma or are considering surgery, you may find a local group of other patients a useful source of information, advice, and support. Details of local groups can be obtained from the national organizations who are also able to give information and support.

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Did You Know?

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

Hydrocephalus can be congenital or acquired.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated CSF around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and fits.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance.....

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Babies born prematurely are at increased risk of developing hydrocephalus.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Hydrocephalus is a build up of excess fluid in the brain.

Shine is always looking for Marathon Runners to help with fundraising.

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Some babies with spina bifida are now operated on before they are born via keyhole surgery.

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