Vulva cancer

Affected by VIN (a pre-cancerous condition) or vulva cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

colostomy bag

Posted by

hey peeps has any1 got or had a colostomy bag i have just been told my cancer is curable but i will need a permanent colostomy bag, i am a bit apprehensive about this wud any1 be willing to share their experiences pls xxx

Posted by

Hi Emmy

Great news that your cancer is curable!! Sorry I don't know much about the colostomy bag side of things. I am sure one of the ladies will be along to offer their advice as soon as. xx

Posted by

Hi Emmy,

I have a colostomy following my surgery in January. Mine isnt permanent. Colostomy is supposed to be getting reversed in 6-9months. Like you I was very apprehensive beforehand. I met the stoma nurse once before I went into hospital and she had a long chat with me. She also tried to arrange for me to have a chat with someone who already had a stoma but this didnt happen as I was admitted within 4 days of seeing her. Stoma nurse gave me a dummy stoma to take home with me and i wore this for 3 days and practised attaching bags etc. Whilst in hospital she came in once a day to see me and taught me how to change bags etc. Since coming home I have regular phone contact with her & see her every 2 weeks meantime. I wont pretend having the colostomy is easy. At first I was very embarressed at the wind/noises passed through it as I had no warning or control over this. Glad to say that has settled down a bit!! I have had a few mishaps with leaking which has made me less confident to go anywhere but stoma nurse is working with me just now to rectify this. Fortunately I havnt been mobile enough to get out much so this hasnt been that big a problem. I am still a bit paranoid that others can see bulge of the bag. This is despite my daughters & husband telling me that you cant. I tend to wear a cardigan all the time now. Its only been 4 weeks since I had surgery and despite what I have said above I have surprised myself with how well I am coping and learning to live with colostomy. Before surgery I said I wouldnt tell anyone I had colostomy but on a few occassions I have found it easier for me to say " I have a colostomy and still gettin used to it ". It puts me more at ease & if others have prolems with it then they need to deal with it. My grandaughter who is 2 kept trying to pull my bag of one day she was visiting so I showed her it. Now when she visits she has to have one stuck to her clothes so she can be just like me. Wee things like that help me adjust to life with my "new friend" and I am sure you will find ways to cope/adjust to. Anything you want to ask just contact me. Do you know when operation is.

Take care

Fi :-)