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Frequently Asked Questions

  • What is a stoma?

  • Who has a stoma?

  • What different types of stomas are there?

  • What can I expect following formation of a J pouch? (NEW from Oct 2017!)

  • How can YOU help?

  • What YOU can do ...

  • What is YOU's Visiting Service?

  • How is YOU funded?

  • Are there Chat Forums that I can participate in?

  • Are there News Groups that I can join?

  • Any handy hints ...? (including Information Sheets - NEW from Sept 2016!)

  • I've got more questions ...

  • Disclaimer

    Copyright © Young Ostomates United Inc


    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.

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    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.

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    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.

    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 & 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

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    What can I expect following formation of a J pouch?

    NEW! In October 2017 we have added an information sheet on "Frequently Asked Questions Following Formation of a J Pouch". Click on the hotlink to access.

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    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.

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    What YOU can do ...

    • Y.O.U. provides members with a bi-monthly newsletter and Calendar of Upcoming Events.

    • Y.O.U. provides a telephone directory of members whom are willing to receive calls, so advice help or support are always close by.

    • Y.O.U. organises regular informal social gatherings i.e.. BBQ's, Picnics, Dinners, Weekends Away.

    • Y.O.U. provides resource material to both new and well-established ostomates.

    • Y.O.U. organises educational meetings on various topics i.e.. sexual counselling, dietary.

    • Y.O.U. provides a counselling service to young people about to undergo ostomy surgery, both pre and post-operatively.

    • Y.O.U. supports worthwhile projects such as World Ostomy Day, Stomal Therapy Week, Network Ostomy Awareness.

    • Y.O.U. liaises with the ostomy associations and the major pharmaceutical companies so as to keep abreast of the latest research, information and product developments.

    Each new member receives:

    • "Especially for You" folder.

    • Problems & Practical Solutions booklet.

    • "Just for You" Annual Journal.

    • Thoughts of Y.O.U.

    • Constitution.

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    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, e-mail Jane at YOU Inc.

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    How is YOU Funded?

    YOU is a non-profit organisation that exists on its annual membership fees.

    So join up and help the group continue its work.

    Click here to join up!

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    Are there Chat Forums that I can participate in?

    Chat Forums are an easy way to meet people via the internet. To visit an Internet Relay Chat (IRC) area, you will need some IRC software (eg. mIRC). Your friendly Internet Service Provider (ISP) should be able to help out, or you could visit Tucows Australia.

    Here are some Chat areas that you may want to check out.

    Shaz and Jason's Ostomy Chat (IRC and Java versions available)

    Set up by Shaz from WA and Jason Dale from the UK.  "... the best Ostomy Chat Channel on the net"?  Judge for yourself.

    StuartOnline Ostomy Chat Room

    StuartOnline's Chat does not require IRC. A nice little feature is that if you find that no-one is in the room, you can do something else (like read email), and you will be notified when someone enters the room for a chat.

    UK Ostomy Support

    According to Stuart (who set up this chat site):

    I am keen to encourage new and experienced ostomates to given and receive support on their condition. In particular I am interested in encouraging new ostomates to chat about their fears and anxieties and get help.

    The chat room is not just for discussing ostomies however, I would very much like it to become a sort of cyberspace coffee house where ostomates can meet and discussing anything. Whilst the site is titled UK Ostomy Support it is not just for those of us in the UK and it would be great to meet up with fellow ostomates in Australia.

    It is a bit fiddly to set up (you need to be registered with Yahoo before entering the chat room, and you need to have get the Yahoo Messenger software), but once there, the people are nice.

    If you know of any other Chat channels to be included here, e-mail Jane at YOU Inc.

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    Are there News Groups that I can join?

    News Groups (also called Discussion Groups) are a central place for people to send messages, or to reply to existing messages (this can lead to some very long and interesting message "threads"!).

    News Groups can be accessed via specialist News Group Readers (your friendly Internet Service Provider (ISP) should be able to help out, or you could visit Tucows Australia). Some Email programs also provide News Group access.

    Here are some News Groups that you may want to check out:

    alt.support.ostomy

    The alt.support.ostomy newsgroup does not seem to get a lot of use (i.e.. there are not many messages), but the issues are very relevant.

    alt.support.crohns-colitis

    The alt.support.crohns-colitis newsgroup gets a lot of use, so much that it takes a while to wade through all of the messages. However, the number of ostomy-specific messages is very small.

    If you know of any other News Groups to be included here, e-mail Jane at YOU Inc.

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    Any handy hints ...?

    Here are a few tricks of the trade that might help, as submitted by fellow ostomates. Feel free to send in your own ideas and hints, so we can all benefit from your experience!

    Problem

    Ostomy

    Hint

    Fountain while changing bags

    Ileostomy

    Eat a few marshmallows about 10 minutes before changing bags.

    Showering and towelling off

    Urostomy, Ileostomy

    Wet a nappy liner and place it over the stoma. It will stick over the stoma and protect it while drying.

    Using public toilets and change rooms

    All

    Don't be embarrassed to use the "Disabled Toilet/Changeroom" to change the appliance.

    Bunching up at the top of the bag

    Colostomy

    Use cooking spray, or olive oil, inside the bag lining, or pop a tissue into the bottom of the bag.

    Removing residual adhesive

    Urostomy

    Mop the peristomal area with warm water mixed with some vinegar (a 1 in 10 dilution).

    Disclaimer

    NEW! In September 2016 we've added information sheets on "Colostomy Irrigation" and "Travel Tips from an Ostomate that Irrigates". Click on the hotlinks to access.

  • Send in your "Handy Hints" to Jane at YOU Inc.

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    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, see the United Ostomy Association's FAQ page.  Please note that this is a U.S. site and comments in relation to ostomy supplies are not applicable to Australian Ostomates.  The use of some terms may also differ (e.g. many American sites use the term "pouch" where Australians may use "bag" or "appliance").  

    Disclaimer

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