04
Oct
2019

Addressing the stigma around stomas

Bowel Cancer Australia

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Over 42,000 Australians live with a stoma and thousands of people undergo stoma surgery every year.

There are different types of stoma and, if you need one, the type you have depends on the location of your tumour and the type of surgery you need.

The stoma will be moist and pinkish-red in colour and will protrude slightly from your abdomen.

Although it may be quite swollen, to begin with, it will reduce in size over time – usually after 6-8 weeks.

Despite being red, there is no sensation in the stoma and it's not painful.

 

 

On February 26th, 2019, Geoff went in to have a colonoscopy. 

It revealed a 6 cm tumour in his bowel.

On March 22nd, he underwent an operation to have the tumour removed.

To allow his body to recover from the surgery, Geoff wore a stoma bag for 3 months.

Prior to having his stoma reversed, Geoff made this video to help address the stigma around stomas and to remind people to be bowel cancer aware.

For information on stoma reversals, download the full Bowel Cancer Australia Stoma Reversal Factsheet today.

 

Ileostomy

An 'ileostomy' is a stoma formed by bringing the end or loop of the small bowel (the ileum) out on to the surface of your abdomen.

Ileostomies are usually made on the right side of the body, but in some cases may be made on the left-hand side. Depending on your situation, you may be able to agree on a site for your ileostomy with your Stomal Therapy Nurse before your operation.

The intestinal waste passes out of the ileostomy and is collected in an external pouching system (generally known as an ileostomy bag).

Following a period of 8–10 weeks, the ileostomy is often reversed, and a person can use their bowel in the usual way.

 

Colostomy

A 'colostomy' is a stoma formed by bringing part of the colon (large bowel) out on to the surface of the abdomen. In the case of a colostomy, the opening is usually made on the left-hand side of the body.

The intestinal waste, (which is 'formed' having passed through the colon where water is absorbed) passes out of the colostomy and is collected in an external pouching system (generally known as a colostomy bag).

A temporary colostomy can be formed to ’re-route' the faeces away from the section of the colon which has been operated on.

Once the colon has healed a second operation to reverse the stoma can be performed which allows the patient to resume normal bowel function.

However, permanent colostomies are formed for some patients if the surgeon is unable to join the ends of the bowel that are left, or if the anus needs to be removed due to the location of the tumour.

 

Before surgery

A Stomal Therapy Nurse is a specialist in caring for patients who require a stoma. Prior to surgery, the Stomal Nurse will discuss where the stoma will be on the abdomen if required and answer any questions or concerns.

A surgeon may not be able to determine if a stoma will be required, so the possibility of forming a stoma will usually be discussed during the consent process, in case it becomes necessary.

The final decision is often made during the surgery, once the surgeon can see the tumour and what needs to be surgically removed.

 

Managing your stoma after surgery

You will meet with the Stomal Therapy Nurse again after the operation. They understand it can be very daunting at first and that learning to manage your stoma will take time and practice.

No-one expects you to be an expert overnight.

For the first few days, the Stomal Therapy Nurse and the nurses on the ward will help you with your stoma.

As soon as you are well enough, the Stomal Therapy Nurse will show you how to clean your stoma, and how to change the bag.

The Stomal Therapy Nurse will give you hints and tips on how to independently manage your stoma, including how to be thoroughly prepared before you start changing the bag, so you know you have everything you need to hand in the bathroom.

If appropriate, they may also talk to you about irrigation as a method of managing your stoma (colostomies only) instead of wearing a bag.

They will also talk to you about the different types of appliances (bags) that are available, and which one might be best for you.

It might be useful to have a relative or friend with you at this time in case you need help or support when you get home.

 

Managing your stoma at home

Once you can manage your stoma independently, and the medical team feels you are ready to return home, you will be released from the hospital with a plentiful supply of stoma bags.

You will be able to order new supplies from your pharmacy, dispensing doctor or a home delivery company.

You should ensure you have the contact details of the Stomal Therapy Nurse in case you have any concerns or queries.

 

Be honest! Talk to someone

It is very important, to be honest with yourself and your healthcare team about your bowel function and about any issues or complications you are having, especially during the recovery.

Embarrassment, anxiety, fear, vulnerability, and feelings of social isolation because of an unpredictable bowel habit, are all common after any kind of bowel operation.

If you are having problems coping, or things don't seem to be quite right, don't suffer in silence and do talk to your GP and/or stomal therapy nurse.

They can refer you to the specialist continence team if the problem does not seem to be settling down, or if it's limiting your ability to be independent and mobile again.

 

Managing your diet

Following the procedure, you may find it useful to follow a low-residue diet, eating little but often and gradually starting to increase the variety and amounts you are eating.

Large meals and eating later in the day may cause problems. It is common to experience bowel movements during the night, for example, which might disrupt sleep and affect your quality of life.

Jelly sweets, marshmallows, bananas and mashed potatoes are good for firming up watery faeces. You may need to limit known culprits like beer, red wine, very high fibre vegetables, cereals and fruits, and spicy or very fatty foods.

The Bowel Cancer Australia Nutritionist has created a collection of low fibre recipes appropriate for people with a stoma. Download our Bowel Cancer Risk: Diet and Lifestyle resource for recipes and helpful nutrition and lifestyle advice,

 

How Bowel Cancer Australia can help

If you would like to talk through concerns or get more information about a stoma, you might like to talk to a member of our Peer-to-Peer Support Network who can answer questions and give impartial support, via phone or email.

Bowel Cancer Australia's friendly Stomal Therapy Nurse Advisor is also available to answer any questions you might have and offer specialised advice.

To arrange a phone or email consultation contact Bowel Cancer Australia's Stomal Therapy Nurse Advisor on 1800 555 494.

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