Intro to group

  • 3 replies
  • 22 subscribers
  • 286 views

Hi,

I have had my stoma for a few years now. 

The likelihood is I will always have it and will always have yearly tests forever. 

Being a gene issues I have family with issues relating to the same gene problem but none with my issues. 

I am normally strong and deal with things stoically but presently due to life things occurring as well I am struggling and it's harder to pick myself up.

If it was just that my bag leaks and my body is not my own any more that would be one thing but there is so much more and finding my way has now been tricky.

  • Hi  and welcome to the group.

    I’m sorry to read you are struggling right now..would you like to share what is causing you to struggle to see if anyone can help at all? What kind of stoma do you have? 

    I have an end colostomy and a urostomy, so am also living with these permanently and it’s not always easy. I’ve have both of mine for more than 3 years, so I’m used to them, but that doesn’t mean things always go well.

    I hope we can help you in the group, and maybe offer some advice from our own experiences, and support if we can.

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I can only repeat Sarah and say so sorry you are feeling like this.If you could explain a little more , people will be along Im sure with ideas which may help.

    I have had a permanent Ileostomy for over 4 yrs if that is relevant to you at all.

    Kath

  • I have had two stomas for a couple of years. The ileostomy pouch used to leak in the early days but, with the help of the stoma nurses, that problem was overcome almost overnight. As well as using a drainable pouch I clean the surrounding area with cold water, then an adhesive remover wipe, then apply a Fusion stick to the skin, press the pouch in place (making sure that the hard plastic ring is in full contact + the margins), then apply Brava elastic strips to cover the pouch flange. Works a treat and I've never had a problem since. I always avoid soap and moisturisers to the surrounding areas as these are likely to negate the effect of the adhesive. Confidence restored after a few weeks' apprehension about going out!

    Best

    Dulac