YOU Stories

Keep an eye on this, our special page, as we keep adding to it.  As the members of YOU share their experiences, you may find something that you can relate to or something that may assist you in times of need.

Ainslee's Story

  • took 8 months to get myself fully sorted, and this might have been shorter had I known what I do now, and had I been put in contact with YOU before my operation ... {ileostomy; spina bifida} ... [read more]

Alex's Story

  • ...I am 16 years old. I had my loop ileostomy for three years now and looking after it has become quite a normal part of my daily life ... [read more]

Amber's Story

  • When I was asked to write about how my colostomy had affected my teenage years ... My first thought was I didn’t have any emotional trauma reaching puberty, and I still don’t to this day ... {neuronal intestinal dysplasia} ... [read more]

Anne's Story

  • Like many other members, I too felt that at last I had found my "niche". The special support and closeness of YOU fills that gap or "void" ... {ileostomy; Crohn's disease} ... [read more]

Brigette's Story

  • I was first diagnosed with Familial Polyposis in October 1980, aged 13. I had my first operation three weeks later ... {ileostomy} ... [read more]


Carmel's Story

  • He is a frequent flyer at the Royal Children's Hospital in Melbourne, so much so that I have a sheet of co-morbidities that I take with us whenever we attend.  Thirteen items on this list are not gut-related, and nine of them are gut-related ... {parent - colostomy; comorbidities} ...[read more]

Craig's Story

  • Not long after joining YOU, I knew this group was for me. It was just what I was looking for ... I am 22 years old and have had Crohn's Disease for 11 years ... {stoma} ... [read more]

Declan's Story - The First

  • The night Declan was born it was a shock to his parents and Medical Staff that he was born with Bladder Exstrophy, his bladder sitting outside his body and inside out ... {catheters, night bags - comorbidities} ... [read more]

Declan's Story - The Second

  • Travelling with a child who has a Bladder Stoma can be daunting, but with plenty of thought and lots of lists, it can be done ... {bladder exstrophy} ... [read more]

Emmy's Story *New in 2022*

  • one week I had three surgeries and my children were told I had 50% chance of coming through this and (then) spent a total of 11 weeks in hospital. Well four and half months later and finally feeling really well. ... {sigmoid stoma; anal cancer} ... [read more]

Gary's Story

  • Here's a little story about my experience with stomal surgery, with exaggerations and elaborations courtesy of an overactive imagination.  Note that the following, story should not be taken as (completely) gospel ... {colostomy} ... [read more]

Grace's Story

  • The story I'm about to tell is, I'm told, not a very common one. My family has a disease known as Familial Polyposis ... {ileostomy} ... [read more]

Helen's Story

  • In writing this story I hope to give some reassurance to any female ostomate who is considering having children ... {ileostomy} ... [read more]

Jane's Story - The First

  • I was diagnosed with Crohn's Disease in 1982.  I was only 16 and had been unwell for at least three years previously. Doctors had been unable to determine what was wrong with me and after a while I began to doubt myself and to think that maybe all the symptoms were in my head ... {ileostomy} ... [read more]

Jane's Story - The Second

  • I remain committed to The Gutsy Group and organisations such as YOU because IBD has not finished with me yet ... {ileostomy; Crohn's disease} ... [read more]

Jenni's Story - The First

  • Jack is now three and a half years old and, I am lead to believe, the youngest member of YOU ... {parent - early childhood colostomy; ulcerative colitis} ... [read more]

Jenni's Story - The Second

  • Jack is now six and a half years old and it has been an action packed ride for the whole family ... {parent - early childhood colostomy; ulcerative colitis} ... [read more]

Jessica's Story

  • The following story is about my move from primary school to my new school for my secondary school years. ... I have a disease called Neuronal Intestinal Dysplasia (NIDS). ... {colostomy} ... [read more]

Julie-Ann's Story

  • ...I'm proud to be the mother of an admirable man who is now approaching his 30th birthday. When we first contacted the YOU Group, Robert was not even in his teens. ... {parent - urinary stoma; bladder exstrophy and epispadias} ... [read more]

Karen's Story

  • Looking back over the last 17 years of my life, with all its ups and downs, one thing for sure is that my ostomy is what has kept me alive ...  {ileostomy; crohn's disease} ... [read more]

Kip's Story *New in 2022*

  • I’m pretty much back to me now, working and studying with no interference and I’m really glad I had the reversal because I bounced back super fast ... {temporary ileostomy; bulimia, rectal prolapse} ... [read more]

Lana's Story

  • I have made it! I have made it to twenty-one. My night of nights has come, and it is my turn to shine! I am not allowed to worry about doctors, needles and hospitals ... {uterostomy} ... [read more]

Melinda's Story

  • ...Alexander was diagnosed after birth with imperforate anus and tethered spinal cord (a mid-line fault). He was taken to the Royal Children's Hospital for an operation to bring his bowel to the surface ... {parent - early childhood colostomy} ... [read more]

Michelle's Story *New in 2023*

  • I am now successfully managing my ileostomy. I still occasionally have the odd hiccup but I work on the premise of “be prepared” ... {ileostomy; irreparable bowel damage} ... [read more]

Mike's Story

  • I've just got back from a 10k ride ... I'm back to full-time work, back to the footy, the movies, the park with my two children ... Mightn't sound like much but given where I was not that long ago, they're all "little victories" that mean a lot ... {j-pouch; ulcerative colitis} ... [read more]

Paddy's Story

  • He returned to school, completed primary school the following year and is now in year 7. He plays football and rugby, swims and has played basketball & tennis ... {j-pouch; ulcerative colitis} ... [read more]

Rosalind's Story - The First

  • ...But often I don't think of my pouch at all, just like the old fashioned way of going to the toilet, you only thought about it when you were in need and hopefully only once a day (before U.C.) ... {j-pouch} ... [read more]

Rosalind's Story - The Second

  • My life after surgery has been very normal.  Apart from a few periods where I have felt “run down” I haven’t had any problems with my J Pouch ... {ulcerative colitis} ... [read more]

Sarah & Jane's Stories

  • First and foremost my faith, which Jane and my family share.  When Jane was diagnosed I drew deep into my faith.  I sorted out what was important ... {parent - ileostomy; ulcerative colitis; liver transplant; liver disease} ... [read more]

Sonja's Story *New in 2022*

  • My story brought me grief, sadness, I believe neglect to my children at their young ages and, eventful joy in my life. I believe if I write this with the best of intentions of my high moments and low moments, the people reading this may be able to relate and not feel alone. ... {ileostomy; crohn's disease} ... [read more]

Steve's Story

  • ...I am 31 years old and I have had a permanent colostomy for about 5 months ... my original problem was Crohn's Disease of the large intestine, which was diagnosed about nine and a half years ago ... [read more]

Susan's Story

  • I think I am now a calmer person... I no longer ‘sit’ on a problem, I ‘let it go’ (or at least I try to!). Rita taught me to live in the now and get rid of any ‘baggage’. ... {ileostomy; ulcerative colitis} ... [read more]

Teddi's Story

  • Since I've had my colostomy since I was five years old I really don't know what it is like not to have it, so I guess my situation is a little different from the usual ostomate story ... {Hirschsprung's disease} ... [read more]

Terry's Story

  • In 1949, aged seventeen, I had a temporary stoma for nine months due to ulcerative colitis.  So what was it like to be a young ostomate during this time? ... [read more]

Wilma's Story

  • After numerous appointments over the next 7 years with medical professionals, I finally received a diagnosis ... {foster parent - colostomy; neuronal intestinal dysplasia} ...[read more]

We end our section of personal stories with a Q&A compilation and hints for parents of children with stomas.

Pregnancy and Childbirth with a Stoma

  • ...we asked some of our young mums how they survived pregnancy and childbirth with a stoma ... [read more]

Stoma Kids

  • Things I wish someone had told me... Five years of things I found out the hard way ... [read more]
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