Young Ostomates United (YOU) Inc was formed in October 1989.
Our original website was launched in October 1998 and was available until May 2002.
We've presented here some of the more popular pages of the original site.
Please click on our logo on any of these original pages to return to our home page.
This is a 'front door', or 'portal', to about 7 Ostomy organisations that are based
in Queensland, Australia. Most of the websites contain little more than the contact details
(eg. for get-togethers, visiting services, etc.). The site's purpose is to provide a central
web presence for the organisations in Queensland, and it does it well, and in a clear and
consistent manner.
'The J-Pouch Group' is an information and support group for people having a J-pouch.
The website has a good set of information on what to expect from a J-pouch,
what the procedure is, and a good set of dietary information both for J-pouchers
and ostomates.
The support group is based in Philadelphia, USA.
Here's some general information about the workings and maintenance of the bowel. There's also information about bowel cancer (eg. the warning signs, and ideas to lower the risk), Constipation, and Irritable Bowel Syndrome. Oh, and lots of sales-speak about the goodness of fibre.
I didn't see any mention of ostomies... unless it is buried in the "members" section for
doctors and pharmacists.
This is a comprehensive case study of surgical procedures (and J-Pouch) to address extremely severe (fulminant) Ulcerative Colitis.
There are lots of pictures, and there is enough information to enable readers to get an insight into the surgery,
or to compare with their own situation.
The NACC is an organisation based in the United Kingdom. The website has useful information about IBD, with a focus on research, and news and reports on many of the projects happening around the world.
The information sheets are excellent, and the Search facility makes it very easy to find things. There are articles on Women's issues and on Teenager's issues.
Unfortunately there is not much on ostomies: a couple of fun personal stories,
but that's about it.
There are lots of home pages around describing personal experiences with illness. Often these stories seem very self-pitying and bitter. This personal home page doesn't seem too bad, although it does tend to get a bit melodramatic at times. The experience related is an honest account of events, and so covers only a very narrow set of symptoms. There is very little insight into life with a stoma.
Since the disease is so much more diverse, Cheryl's story could not really be used as a guide, and only a very limited example, of what to expect. Some of the leaps and assumptions (eg. that the disease is due to bottled up emotion) are, at best, questionable. It is a good example of "don't believe everything that is on the internet".
But the site is saved by the addition of a good, concise outline of Crohn's disease, seemingly by a gastroenterologist who has a good grasp of plain English, covering the questions:
There is only one message that is ostomy-specific, which is a link to "ostomy products" sites.
The site is a nice idea, but until it gains popularity, there are better alternatives.
Here is an organisation dealing with the "less popular" gastro disorders.
The information is very dry, describing the types of disorders and their characteristics, and touching on research, books and publications available to assist in treatment.
There are some good stories and Q&A from a parent's perspective, and not necessarily disorder-specific. A lot of the insights can apply to parents of a kid with any chronic disorder.
PatientCommunity.com is a web site with a wealth of information relevant to IBD and IBS. There are a lot of links (with useful overviews) to other ostomy sites, and there is a good deal of information regarding Crohn's and Colitis, including a comprehensive table of treatments and research for these conditions. The information can be a little dry, with articles written in "medical-speak", but this is appropriate for the level of detail provided. Other impressive features are the good collection of Webring links, and patient surveys.
The Crohn's Disease Colitis Source Site is a "launch pad" to a wealth of IBD-related information, including links to:
The extensive collection of links are divided into logical categories, as can be found on most other websites. However, the focus on nutrition and alternative treatments provides additional links not found at other sites.
A gathering place for kids, teens and adults who battle chronic illness or a physical disability, providing support, interviews, information, interaction and self-empowerment. Support for care givers, too. There are lots of different articles, mostly geared to helping people feel better about their lot. The site is not ostomy-specific, but there are still a lot of relevant issues that are shared by any with a chronic illness.
Everyday Warriors claims to be a place where you can be yourself, air your gripes and brainstorm solutions so you can live the happiest, fullest life possible. I'll leave you to be the judge of that!
"Everyday Warriors" offers a perspective not found in other sites.
There was no site review in May 2001.
Behind all of the annoying banners and behind-the-scenes cookies, Dan's Book Store offers a good shortlist of books, arranged into the following topics: General IBD Information; Diet and Nutrition; Support; Alternative Therapy. The list of books are presented with a photo of each book and a descriptive review, along with a "rating". From here there is a link to an online book store where the books can be ordered.
A revisit to Shaz's Ileostomy Page was well worthwhile. The site is mind-blowing! There is a mighty lot of stuff on the site. There is truly something for everyone, from those researching prior to surgery, to those that have had an ostomy for years, and from people just wanting the facts, to people wanting to get in touch with others. The only downside is that with so much information, the site takes a very long time to load. It does load a lot faster if the Browser options are changed to stop the automatic loading of images.
Here is a "Yahoo!" Club, using the Yahoo! format. It's not bad, providing handy stuff like a Message Board, a Chat Room, News, and a Calendar, all in a fairly easier-to-use format. The site is light on for information, but that is not its purpose. The Club is a mechanism for getting in touch with others, asking questions for others to answer, and generally helping each other.
Here is a collection of stories from people with illnesses (including Crohn's or Colitis) that are also trying to be a parent. The stories range from self-pitying, inspirational, insightful, depressing, and sometimes a mixture of everything.
The site has lots of links, but nothing that is really ostomy-specific.
This web site is a relocation of the content found on Jason Dale's Home Page (reviewed May 1999). The site offers links to very good services (IRC Chat, Discussion Forum, Email Newsgroup, FAQ). Jason has built a great reputation for providing excellent (and quick) responses to questions. And the Lifestyle Guide available from the site is an invaluable resource, for ostomates and ostomates-to-be.
Note that some of the content is UK-specific, or colostomy-specific, but most of the information is relevant to all ostomates.
This is a very well-designed web site, where you can browse the Australian government's research programs, advisory programs and publications. It has little about stomas, except for some information about the subsidy of appliances. It has got a some very good publications regarding bowel cancer.
The "CD and Ostomy Site" has been updated as "The IBD and Ostomy Site". There is a little glossary of what some of the medical terms mean, and a set of answers to frequently asked questions about stomas and various IBD medication. However, even after a year, the site content is still pretty lame.
The Invisible Disabilities Advocate's website fills a bit of a gap in the information that is out there. IDA gives some helpful ideas on coping with a chronic illness, including tips on how friends and family can be supportive! The author is schooled in Christian Leadership, and there is a section on a Christian approach to dealing with an illness. The point is made many times (bordering on self-pity) that coping with an "invisible" disability faces more hurdles than coping with a visible disability.
BandAides & Blackboards is a site dedicated to youngsters with chronic illnesses. It contains a large collection of stories about each of the main issues facing those with a chronic disability, including tips for parents and teachers. Check out Devon's story: "Devon's ready for action".
The Cummerbund Club is a light hearted look into the use of Cummerbunds by ostomates. There are also a few candid stories about the management of leaks. The language can be a bit strong, so be warned!
The PARA organisation is a US organisation that seems to have been set up to facilitate research into
Crohn's Disease. There are lots of links to the latest research being conducted. The site is not stoma-specific.
The Australian Crohn's & Colitis Association have a great library of resources, and the latest information about treatments and research. The web site is not Ostomy-specific, but is very useful nevertheless. The article on pain management is particularly interesting.
The Jackson Gastroenterology site is a medical site specialising in information on the digestive system. It includes a good description of an Ostomy, and of an Ostomy-friendly diet.
This is a very comprehensive and descriptive explanation of many of the issues facing new ostomates. But take note of the little disclaimer (ie. check with the doctor / Stomal Therapy Nurse), for everybody's different.
This is a very comprehensive and honest journal of the issues facing parents with ostomy kids (and any kid with a "disability").
Here is a taste of the issues covered:
As you can see, a lot of work has gone into compiling these notes and experiences, to hopefully make life a bit easier for other parents.
The IBD Foil Hat is a site for both Crohn's and Colitis people, covering many frequently asked questions, medications, treatments, and tips. The section on stomas is largely a collation of information from other web sites (including Shaz's Page), pulled together in a nice bundle.
Like with many other personal web pages, the "host" flashes up a message whenever the page is changed, which can be a little annoying (but nothing that a quick mouse click can't fix!).
The University of Wisconsin has a Research section, and includes a very informative description of the "Ileal Pouch Reconstruction" procedure.
Information provided covers:
It includes statistics on the various types of complications. This site is well worth a look if you are thinking of having an "Ileal Pouch Reconstruction".
The Swiss Ostomy-page is extremely good and comprehensive.
It has information on "What is an Ostomy" and on the structure and purpose of the intestinal tract, sections on "Life with an Ostomy" and much more.
Here is a copy of their "Table of Contents":
The "Tips and Tricks" section is particularly handy.
We're still looking for Spina Bifida sites with good information on ostomies. The QAPSBH site has a lot of good practical information, but is still pretty light on when it comes to ostomies.
If you want a really mind-blowing amount of information, check out the following site: Spina Bifida web site and it's "All the info you will need to know" section.
A site still growing... It offers a good set of peoples' stories, a good description of various surgical procedures, a weekly chat group with people talking about various topics of interest. The main focus of the site is to maintain a number of "lists" to keep people in touch with each other. The site is based in Canada, but the lists are international (Australia is still a small fry on the global scale). The only drawback for me was that I found the number of images a little annoying... so I clicked the "No Images" option on my Web Browser :-)
A new personal homepage with a section on Ostomy and on Crohn's Disease, answering some of the more common questions.
The content is pretty lame, but it is early days yet. It will be interesting to see how this site grows.
There doesn't seem to be many sites catering for folk with Spina Bifida. And I am yet to find any that are stoma-specific. Maybe there's an opening for any budding website authors...
The International Federation for Hydrocephalus and Spina Bifida does have an Australian arm, but the Australians do not have much on their web page other than contact details. At least the Headquarters have published one of their newsletters online!
There really doesn't seem to be much out there regarding Spina Bifida. If anyone knows of a good site, please let me know! (email Gary at
elk@blaze.net.au )
This is a really excellent site for new ostomates and ostomates-to-be. Jason's personal story is very detailed and explains a lot about what to expect and how to handle life as an ostomate.
Topics include:
A discussion forum and chat site are also available. I haven't checked them out yet, but if the story is any guide, they'd be well worth a look.
The AASTN (Australian Association of Stomal Therapy Nurses) is based in Adelaide, and have a quarterly journal of info and news, plus a list of "recommended reading". As well as providing their journal online, the hope is for the executive and the state branches to use the web site to advertise branch activities, courses, study days, etc.
A Chat Room is available, and will hopefully become more popular as more people become aware of the new site.
The Pouch-o-Gram is a quarterly newsletter published by the Department of Colorectal Surgery at The Cleveland Clinic Foundation, and available online.
It provides a lot of medical information for people with pelvic pouches, and presents the information in a surprisingly easy-to-read manner.
Here are some examples of what's in the newsletters:
It is a very good place to get the facts (from a medical perspective).
The IBD Humour Page has a whole section specifically devoted to Ostomy humour. It also includes an Ostomy Chat site. There is little irrelevant information, and plenty of humorous stories. It's a welcome break to the rigors of life.
At last! An Ostomy-specific site! The Pouch Clip Board has a nifty little "Frame" with a contents "tree" for navigating through the site (not so nifty if you have one of the old browsers that does not support Frames; try The Pouch Clip Board Front Page). Here's a sample of what's on offer:
A great feature of this site (apart from being specifically about Ostomies) is the online opinion surveys, like "Personal Costs", "Regrets" and "Clip Preferences". It's very interesting to read what other people think about having an ostomy.
Teens With Crohn's is a cool little site (although not really Ostomy-specific), offering:
The novel recipes are worth a read. And the Chat Room is a good idea (if you can ever catch anyone online).
The Crohn's & Colitis Web Site is not really Ostomy-specific, but there are lots of excellent links to things like:
The site also has a lot of good book reviews.
There is an excellent message board, organised into topics and sub-topics, but again this is not really Ostomy-specific.
One of the most interesting features of the Site is the large number of peoples' stories,
on all sorts of topics.
Shaz is one of the most wonderfully friendly people you could meet, and this shines through in her spritely, colourful web pages. The pages take a while to load, but the content makes it all worthwhile!
There's a really honest, helpful set of answers to "Frequently Asked Questions" (and not in medical-speak, but from a real-life ostomate!).
Shaz has put a lot of her own time and effort into offering a very useful Message Board, an IRC Chat service, and a list of email addresses for ostomates around the world.
Shaz's Page is definitely worth bookmarking. It's one of the few Australian ostomy sites around.