Frequently Asked Questions

What is a stoma?

Stoma is the Greek word for opening. Stomas are created surgically for the removal of waste products from the body.

A stoma is not a disease.

Types of Stoma:

  • Colostomy - redirected from the Large Bowel

  • Ileostomy - redirected from the Small Bowel

  • Ileo-Anal Anastomosis (J-pouch) - an internal pouch formed out of the terminal portion of the ileum (technically not a stoma)

  • Urostomy, Ileal Conduit or Urinary Diversion - tubes which drain urine from the kidneys are implanted into an isolated piece of small bowel which acts as a tube to divert urine.

  • Ureterostomy  - redirecting one of the ureters from a kidney to an ostomy created on the side of the abdomen (single uterostomy).  A bilateral uterostomy is when this is performed on redirecting the ureters from both kidneys to create two stomas.

Who has a stoma?

Anyone from a newborn baby to the very old can have a stoma ( ileostomy, colostomy, urostomy ), people who come from all walks of life, race and creed, in all types of jobs, sports, and other activities.

Australia has between 18,000 - 20,000 people with a stoma. Individuals with a stoma are no different from anyone else but simply have a different or alternative way of going to the toilet.

What different types of stomas are there?

Colostomy: A surgically created opening anywhere in the large bowel or colon, hence the name, Colostomy.

Ileostomy: the small intestine or small bowel is made up of the duodenum, jejunum and the ileum. An ileostomy is a surgically created opening into the ileum.

Urostomy: Also known as a 'Urinary Diversion' or 'Ileal Conduit'. The bladder, which is the storage vessel for urine, is bypassed or diverted. A piece of small bowel is used as a conduit between both ureters to divert the urine. The ureters are the small tubes that drain urine from the kidneys. The piece of ileum from the small bowel forms a urinary stoma.

Mitrofanoff: This is a surgically created channel/tube using the appendix or a piece of small bowel between the bladder and the abdominal skin surface. A valve is created to prevent urine leaking out through the stoma.

Malone: The appendix is brought out onto the abdominal wall and a small stoma is created with a valve to stop bowel contents leaking out.

Reasons for Ostomy Surgery

Cancer:

Most commonly found in the Colon and Rectum. If the cancerous tumour is very low in the rectum, a permanent colostomy is created. Temporary colostomies or ileostomies are frequently created to protect the anastomosis or join following the removal of the area of bowel affected by the cancer.

Inflammatory Bowel Disease:
Ulcerative Colitis and Crohn's Disease are inflammatory bowel diseases which are usually treated with medications and dietary modifications. However, a small percentage of people who have these diseases require surgery, resulting in ostomy surgery. The most common type of stoma is an ileostomy. The majority of people requiring surgery for ulcerative colitis have a temporary Loop Ileostomy following the removal of their large bowel and rectum. This necessitates the creation of an Ileo-Anal Pouch (i.e. a J-pouch).

Congenital Abnormalities (e.g. Spina Bifida):

In Spina Bifida, there are no nerves to indicate when the bladder needs emptying. While in this modern age few people have urinary diversions for Spina Bifida, there are many people who have had this surgery, resulting in an ostomy.

Familial Polyposis:

Any of several inherited diseases that are characterised by the formation of polyps in the gastrointestinal tract.  Surgery required is often the creation of an ileostomy or an Ileo-Anal Pouch (i.e. a J-pouch).

Hirschsprung's Disease, Slow Transit and Imperforate Anus:

These are other congenital conditions that may require a temporary or permanent ileostomy.

Trauma:

Usually trauma to the lower part of the colon or rectum, as caused through insertion of objects into the area, gunshot, stabbing into any part of the bowel or perforation due to road accidents may require an ostomy. These stomas are usually temporary, however, if damage to the anal sphincter is extreme, a permanent stoma may be required.

Diverticular Disease:

If perforation to the bowel occurs as a result of diverticular abscess or is imminent, a temporary colostomy is created.

There are many other rare reasons for ostomy surgery, but the above are the most common. Whatever the cause, having an ostomy does not preclude people from enjoying a normal life. This is assisted by being well educated, not only in the care of the stoma, but also by being emotionally well adjusted to the situation.

Lilian Leonard (R.N.; Stomal Therapy Nurse)
February 2000
(Updated October 2019)

What can I expect following formation of a J pouch?

We have recently added an information sheet on "Frequently Asked Questions Following Formation of a J-Pouch". Click here to access.

How can YOU help?
  • By having contact with the other ostomates of a similar age group. Freedom to discuss feelings and concerns with others.
  • By offering a friendly visiting service both pre- and post-operatively by a young ostomate.
What YOU can do ...
  • YOU organises regular informal social gatherings.
  • YOU provides resource material to both new and well-established ostomates.
  • YOU organises educational meetings on various topics i.e.. sexual counselling, dietary.
  • YOU provides a counselling service to young people about to undergo ostomy surgery, both pre and post-operatively.
  • YOU supports worthwhile projects such as World Ostomy Day, Stomal Therapy Week, Network Ostomy Awareness.
  • YOU liaises with the ostomy associations and the major pharmaceutical companies so as to keep abreast of the latest research, information and product developments.
What is YOU's Visiting Service?

Its aims are:

  • To offer support and reassurance to young people undergoing ostomy surgery (ileostomy, colostomy, urostomy), before and after surgery, by personal contact which will help allay feelings and fears of isolation.
  • To offer empathy and understanding with practical suggestions.
  • To show by action and behaviour that the visiting ostomate is leading a normal happy and useful life.

It is important to realise that the Y.O.U. visitor is not a qualified counsellor but visitors have undergone a basic workshop on counselling, organised by the Professional Convenor of Y.O.U., and follow the guidelines below.
As ostomates ourselves we have all experienced the trauma of this type of surgery and feel strongly that the intending ostomate should have the option of a visit by a well adjusted ostomate of a similar type and age.
It is the right of every young person undergoing ostomy surgery to be offered this FREE SERVICE.
If you would like to receive a visit, please contact Helen, the YOU Inc Secretary, via e-mail.

I've got more questions ...

There are a lot of questions that are often best answered by another ostomate. Your doctor and/or Stomal Therapy Nurse will not know what it is like to live with a stoma. By contacting Y.O.U. you can speak to someone who has been through a similar experience.

Typical Questions:

  1. Who should I tell? What should I say about my surgery?
  2. Will I be able to continue my daily activities once I recover from surgery?
  3. What about showering and bathing? Should I bathe with or without my bag?
  4. What can I eat? Will I need to change my diet?
  5. What about sex and intimacy?
  6. Will I be able to get pregnant after surgery?
  7. Is travel possible?
  8. How often should I change the pouch?
  9. Can I swim with a bag?
  10. Is this the end of my sex life?

For the answers to these and more questions, use our Facebook page, our Facebook closed group or contact us via e-mail.

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