What do you wish you had known before living with a stoma?

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Hi everyone,

You may have seen the Community team have started a ‘What do you wish you had known’ blog series where we ask Community members with different lived experiences what they wish they had known, in the hope this may be helpful to others on a similar journey.

In the latest of our new series of blogs sharing hints and tips from members, we are asking:

"What do you wish you had known before living with a stoma?"

This could include questions you might want to ask, practical tips or help with anxiety when approaching appointments and some reassuring messages of living with a stoma.

We will be featuring some of your suggestions in an upcoming Community News Blog, but this thread will remain as a resource for anyone who needs it. 

Thank you in advance for sharing your experience and support. If you have any questions, would like to be a guest blogger to share your individual story, or need additional support, please email community@macmillan.org.uk and we will be happy to help.

Best wishes, 

Megan
Macmillan's Online Community team

  • Have been living with my stoma for 52 years now (got it at age 23) and back in those days the equipment given by the hospital was very basic.  I quickly learnt to try whatever was available to find what best suits you.  Register with an online specialist delivery service and they will do everything for you from requesting prescriptions from your GP to delivery and they will help you find what's best for you. Always make sure you keep plenty of items in stock to cover any supply issues.  You'll get used to it and it becomes part of your normal like.  There is loads of info available online to help you with any issues you have with it.

  • We have tried the hairdryer but still,l they come unstuck, a y further tips? 

  • Are you using anything apart from water to clean the stoma?other things can affect adhesion of the base plate.

    Also some people recommend baby oil in the bag .if this gets on the sticky surface it will prevent the bag adhering properly

  • It never worked for me either - very upsetting. My tips,

    • for a few minutes before bag change hold the new bag under your arm or if female inside your bra so it warms up next to your skin. I do that while putting my spray, wipes, warm water etc ready to use.
    • Remove old bag, wash around stoma with warm water, dry with dry wipes or absorbent toilet paper and plug stoma with a dry wipe to catch urine (mines a urostomy but adhesive is the same regardless of type of bag)
    • then pull out the new bag from armpit/bra, remove the plastic protector from it and the bag is now warm, take away the wipe over the stoma and press the bag against the skin around the stoma. Firmly rub the back of the bag collar around the stoma and the bit around the outside edge firmly to get the adhesive even warmer and start it sticking. 
    • I attach a narrow stoma belt - my stomach area is flabby so that helps it stick and pull up my elasticated stoma pants with pocket (M&S). You may not need this.
    • Then I cup my hand over the bag , covering the adhesive and hold it for 2 minutes (I do a breathing exercise on my Fitbit). This really makes it warm so it sticks well.

    All done. Then I tidy everything away and finish dressing.

    And since doing this I only have leaks when I let the bag get too full ie heavy so it pulls away from the skin.

    I hope it helps.

    All the best,

    Latestart

  • Use a Salts wet wipe to clear the skin of adhesive remover; it will dry in a few seconds then apply a Fusion stick to the skin to prime the area to receive the adhesive flange. I run my thumb around the inside of the cut out in the new bag to lift the cut edge to ensure full contact, then apply the bag by pressing the hard ring around the stoma first then smooth outwards and try to press inside the ring for maximum effect. For all that I have to say that the only way for me to be free from leaks is to supplement the flange with elastic strips (from your equipment supplier). Without them I would not be as confident about going out.

    I had a few leaks in the early days but since adopting this routine no distressing leaks have occurred; even though the bag flange has failed (usually after being crammed into an aircraft or car seat for a long journey) the elastic strips hold very well indeed. Early on I would never venture out without carrying my stoma kit with me, but now I only do so on long journeys - say more than three hours - just in case!