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  • Joseph

    Hi everyone,

    By Joseph

    Hi everyone, Eight months have past rather quickly since the day of my life-saving operation to remove my diseased intestine. I couldn't be better! I've had my ups and my downs which could be expected but I'm now living life to the full. Previously I suffered from Crohn's disease but now the 'suffering' part has vanished. I'm perfectly normal, aside my ileostomy pouch. I'm currently on placement with a large company that manages the trunk roads in Scotland, Bear Scotland. I'm doing Administration and I'm very happy there. They have been kind enough to facilitate my needs and place me on a training course (SVQ Administration) which will boost my C.V to a great extent. It's only a couple of months until I start temporary-employment, messy weekends expected! Here's me and a close friend, I'm the one in the blue shirt.
    • 8 comments
    • 476 views
  • LesaMarie

    Hi everyone!

    By LesaMarie

    New to the forum. Had an ileostomy on 12/12/2012 which is temporary. Having a rough time with it. Skin is stripping all over and ostomy bag won't stick at all. I have to change the bag several times a day due to leakage. Running out of options. Home health nurse discharged me but thinking I need the nurse back. Any support, ideas, thoughts on how to get through this? I am an emotional wreck and feel embarrased to see friends or go out in public.
    • 9 comments
    • 544 views
  • HildeAL

    ostomy nurse

    By HildeAL

    First meeting with my ostomy nurse after the surgery, the 16th of March. I’ve made a list with questions for her. I’m curious with the Irrigation procedure, when can I start? I’m preparing to move back home again. I’ve lived with my parents since the surgery, but it’s not an ideal situation, I miss living closer to the city. So I hope I’ll be home during this week. But it stills hurts when I’m walking; it feels like I have open wounds in my stomach. Mentally I’m down at the moment. I have mixed feeling about my new colostomy. I’m glad that this has given me a new freedom in many ways, but I just hate having a bag with poo on me. I think it’s disgusting. Sometimes I could just wish this was not my own choice, so I could just be angry with the surgeons and nurses when I felt like it.
    • 8 comments
    • 680 views
  • MarkP_AUS

    12 Months on

    By MarkP_AUS

    Well it was 12 months on the 20th April since I had my little spouting friend installed. It has been quite a roller coaster ride. My current health status is 1. ileostomy is fine with little bag troubles (I am lucky with that). 2. Crohns active causing pain and possible cause of the partial blockages i currently have, mouth ulcers come and go depending on the Crohns activity. 3.Staph infection in the anal area which has not heals since original op, under treatment which seems to be working but slowly. I have returned to work again with a VAC pump on, luckily my work is good with my medical issues. My family are happy to have me home again after this last 8 week stint in hospital. I am really happy my wound is healing as the 1 and 1/2 hrs it takes to change it is a real pain in the butt LOL.
    • 1 comment
    • 418 views
  • Scarlet Moon

    8/9/2012

    By Scarlet Moon

    I've been thinking about starting a blog about life with my stoma, Squirt, but was concerned it might turn into a major whining session or have people respond by telling me how lucky I am and go into their saga or leave sympathy or hang in there comments. My goal is not to make this a pity party but to make info available. When I was healthier, I used to frequent ostomy forums and try to reach out to new or future ostimates to at least offer some support, but there's a lot of idiots in this world filled with rude and cruel comments. So I turned off comments and have no guilt about being honestly brutal about what it's like to be 38, and sick. . and sick of being sick. I've been an ostimate on and off for 12 years and my current stoma is permanent as of 3 years ago. I know family and friends try to understand, but until you wake up in your own dookie or experience a bag/wafer blow out, you don't really get it. It happens and you move on. I'm used to Squirt but do wish he'd be better behaved. After 6 bowel surgeries I am left with short gut syndrome and on TPN--fluids only. I should probably be grateful for that, but it's hard to remember when I'm on an IV for 12 hours and seem to go septic every 6-9 months. The last episode just about a month ago and it seems the accompanying pneumonia and lung nodules may be lingering. Time will tell. And in time, my tale will unfold.
    • 0 comments
    • 405 views

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    Recent Entries

    Who am I now? Still a person, a woman, a partner, mother, daughter, sister, friend, teacher, urostomate, cancer survivor, me... I'm still me. My ostomy journey began in mid 2007 with bladder incontinence symptoms that were treated for UTIs and menopause for six months. Finally diagnosed in January 2008 with bladder cancer, I had a procedure to try to get the tumour out but it had invaded the bladder wall.

    In late February 2008, I had a radical cystectomy, where I got three operations in one. I had a hysterectomy because those organs were so close to the bladder. Then to enable the ureters to carry urine from the kidneys to outside my body without a bladder, a conduit was made from my ileum and the small intestine sewn back together.

    So I awoke finally, to discover my stoma, a part of me, poking out cheekily. It had a good spout and performed well. I was truly amazed by it. Before leaving hospital, I was trained to care for my stoma. Gradually my strength returned, going back to work after nine weeks. Interests such as bike riding, gardening, walking returned soon after that.

    So what's my new normal? For a start, I'm here! Without the urostomy, I wouldn't be here full stop. So how do I manage to work full time, garden, bike ride, camp, travel, trips to Melbourne, etc? Fortunately, from the start, I had a supportive family who say mainly all the right things. Some have moved on and say they have largely forgotten about my urostomy. Most friends either do not know about it at all or don't understand much past the basics. But all treat me as normal which helps. Funny though, I'm never on my own. I have a good support base.

    Fortunately the practicalities of a well-formed, well-positioned stoma have also assisted me. I try to keep pouch and base plate changes to a minimum of fuss- quick and precise. The reality is leaks and frequent toilet trips could happen. My leaks have all been due to human error- mine! But they are infrequent and I have confidence in my appliances. Also I'm pretty upfront. If I gotta go, I gotta go! I ask people to look after my class or nick out during shows, movies, etc. I'd rather do that, than leak.

    During the day I live a full active life. And at night and weekends, I've surfed the internet for ostomy sites. The forums for ostomy questions and answers and the live chatrooms, where I can talk to other ostomates, provide all the support I need between my real support meetings. Armed with a great stoma, basic training, acquired knowledge and continued support I'm ready for anything. Last December, eight months after my operation, I rode the last three days of the Great Victorian Bike Ride, covering 250kms.

    I realise it's not always easy. But I never truly felt sad about having a stoma. For me it's a celebration of life. My suggestion to those who want a better normal is to get fitted out with the best appliance possible; seek support from those who can give it; set yourself little challenges; and always be prepared for whatever this wonderful life sends your way.

  1. Hi all ,

    sorry not been back here could not get online with lap top and this is to footery to do from phone.

    Cammys surgery went as planned stomas no more!!!! he went to theatre at half eleven ish and was not back on the ward till half six

    boy did that feel like an eternity .When he came back down to the ward he had morphine infusion and an epidural which they kept topped up,

    he was on IV paracetamol and three different iv antibiotics .

    He had packing in his rear end which caused him great discomfort ,that came out Friday nite to his reilef.

    We are now day four epidural is down ,back ground morphine is off he is only getting what he presses the pca he is still having anti biotics

    IV fluids which they have had to add to as he was loosing so much through his ng tube.

    He is sleeping pretty much all of the time which is good .

    Later thanks for all the well wishes

    Pauline & Cammy xxxxx

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    Recent Entries

    Well maybe not prime minister - but today Hannah got voted onto the school council. I am not sure what her campaign speech was, i dread to think really lol

    So they meet once a week, two kids from every class,except reception, so 10 kids,plus the head teacher ....12.30 every thursday in the library pmsl serious stuff- i can just imagine it now LOL

    I aksed Hannah what her duties were and she said "to improve the school for the pupils AND MUMMY I AM STARTING WITH THE TOILETS !" Hhahahahaha i knew that would be the reply, as she has serious issues about the unfairness of the toilet use policy lol now it does not affect Hannah as she has permission to go when ever she wants to go - but as the kids get older Hannah's class mates have found that toilet times are restricted a little, with good reason to be fair else they would all be in there lol.Some teachers are worse than others, i have witnessed it myself so tis not porky pies lol Tis just all part of growing up.........but YAY Hannah pmsl i shall carefuly say nothing to her re the toilet debate, else the head, who i have had erm "issues" with and she has had a good bollo***ng from Hannah's urology nurse before, will know its come from me:)

    Hannah,s not as daft, or as meak and mild as she looks- the sneak !!Cant expect anything else from a child who's life has been ruled by the toilet so far!!!

    *titter* :icon_mrgreen::icon_mrgreen::icon_mrgreen:

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  2. Row's Blog

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