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Living with a stoma bag.

LindaB
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I did the stick test to screen for bowel cancer that came in the post after my 60th birthday. I was called for colonoscopy on Monday and told afterwards that I will need surgery and have to have a colostomy bag for up to a year and possibly longer if the bowel doesn't heal. Anybody's worst nightmare.

Apart from a bit of blood in my poo I have no symptoms and am facing possibly life with a bag.

How does anyone cope with living with it?

I wish I had never sent the test back. I am seriously considering pretending I hadn't and just get on with life.

What can I expect to happen if I ignore it.

  • Hi Linda,

    Sorry you have had this news, I can't speak from personal experince, But there was a woman who was working in my place of work who had a bag, and I never knew in all the four years I was working there until someone told me (the woman was rasing cash for cancer charity and let it be known she had it). There are many people online who live normal lives doing normal things and write about it. I think this is the sort of thing that is a problem only if you allow it to get to you.

    The worst thing you can do is ignore it, The outcome could be far worse. I think anyone who gets cancer has the thought of wishing they had never had the test, or they think of just ignoring it and getting on with live, but that is not the solution.

    Please try and talk to someone about it, most times things are far less worse than you think they are going to be, you just have to get used to it.

     

     

  • Offline in reply to Space_1999

    Thanks for taking the time to reply. I appreciate it.

  • Offline in reply to Space_1999
    Hi Linda and welcome to the forum. I'm sorry to read of your diagnosis. I think it's only natural to want to pretend it isn't happening. I was in a similar situation to you - a bit of blood in my poo which I kept visiting the GP about and was told it was piles. (I'm under 50, so too young to receive the stick test.) Eventually, I had more symptoms and went to see my GP to ask for a referral which lead to my bowel Cancer being diagnosed. I had a course of chemo-radiotherapy to reduce the tumour and then surgery to remove it. I have been left with a temporary ileostomy (stoma bag) In the early days, I was extremely upset about having this new plumbing, but as the weeks went on, I became more confident about living with my stoma ( I even named him! ) I altered my diet to suit having a stoma and had the help and support of a stoma nurse. I also had a specialist colorectal nurse who I was able to ring if I had any questions. I found this site which has helped me no end and recently have joined a closed Facebook group called the Colostomy Association (which you 'request' to join ad the news feeds don't show on your usual facebook page, so it's all private) I've had loads of useful tips and questions answered there,) Linda, it is very hard to get your head round at first, but my stoma doesn't stop me doing normal everyday things - it's about getting to know your body. Please post anytime and if you have any questions, I'll try to answer them. Take care, it's very early days for you - newly diagnosed and having to deal with the prospect of a stoma, but take it a day at a time. Hugs to you, Jo xx I see your thread has posted 3 times (easily done on the new style forum) and I've posted on one of the others, but I've pasted a duplicate response here too. roz_dog has given you some very good advice. xx
  • Offline in reply to Meerkat@65

    Thank you so much for that. I probably will come back with some questions. Got to have the CT scan and MRI scan first. If the cancer has spread, they won't opeate anyway, so we will just have to wait and see.

    Linda

  • Offline in reply to LindaB
    Hi Linda, just wondered how you're doing? Thinking of you, Jo xx
  • Offline
    I woke up one morning with a tummy ache and ended up with a stoma. Nothing to be afraid of at all, although it sounds grim at the time. fold it and tape it up when I'm out and I don't even know it's there. Honestly, don't ignore the medical advice. Jan
  • Offline

    Hi Linda,

    I've got two stomas, a colostomy and a mucous fistula. From the off I've never had any problem mentally/emotionally. I've had to have the colostomy redone twice due to it closing over. I don't care about it at all, it's just a different method of going to the toilet.

    There are the practicalities to consider which can be a slight embuggerance from time to time but I don't really have any serious problems.

    The main thing about changing or emptying the bags is to remain calm and have everything in place before you start.

    And you should be prepared to laugh at the mishaps, blow outs and such. 

    I'm so at ease with the whole thing that I could happily change the bags in a roomful of people.

    Have you ever changed a baby's nappy? It's just something that needs doing so you get on with it , right? You don't have a meltdown every time you do it. Same attitude is needed with stomas.

     

    Any questions, just ask away.

     

    Best Regards

    Taff

  • Offline

    Hi Linda B 

    Living with a Stoma is the easy part its not so dramatic when you think you may not be here due to cancer - i have a stoma bag and i think how lucky i am its down to keeping it all clean and looking after yourself - listen to the experts be guided by them and deal with it 

    May sound harsh but its facts 

  • Offline

    Hi Linda ,

    know the feeling been fighting the bag now for 3 years running out of time .

    what was your outcome did you pretend it s not happening or did you get a bag .

    kind regards 

    just x

  • Offline in reply to Meerkat@65

    I too reported bleeding to my GP and received the same diagnosis, luckily i was nearing 60 so received a stick test. Which revealed I had rectal cancer, and a now facing the prospect of a permenant Colostomy. Which is devastating as I'm a very active person. My main thing is GPs total lack of care, I complined and all I got was ,we should have done this we could have done this, but we didn't. I'm so angry.

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