We understand that people with cancer are worried about coronavirus.
Here is the
We will update it regularly.
Go to your personalised cancer information and support area
Existing Macmillan user? Access your events, volunteering and Macmillan Online Community
Hello, I only got home from hospital yesterday evening. Struggling with leaking bags and because of having to change so often sore skin. I was scared to go to bed last night in case it leaked everywhere but have slept well, my own bed felt so good after 3 weeks in hospital, and no leaks. I feel as though I will never have the confidence to go out again. Any tips?
Hi NewtostomaDaisy and a very warm welcome to the online community
I'm sorry to hear how you're struggling at the moment and, although I don't have a stoma, I would imagine it's a lot to get used to. Could I suggest that you join the ileostomy, colostomy and stoma support group as I'm sure the folks there will be able to help you.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
What is a Community Champion?
My welcome to the community
I'm sorry to hear that you are experiencing leaks so soon after being discharged from hospital
Can I assure that you will have the confidence to go out again, having a stoma is no deterrent to living a normal life for example there is currently a rugby team comprising of people with a stoma and they play regular games, also with a stoma, bus drivers, policemen, tradesmen in fact people just like you all leading a normal life.
About your leakage and sore skin
Leakage is normally caused by poorly fitted bags as you only left hospital last night can I ask if you cut your own base plate. It is imperative that when cutting the base plate that the hole you cut should fit snugly around your stoma,
Too small you will get a leak and strangle your stoma
Too big you will get a leak
Did the hospital stoma care nurse show you how to measure your stoma and did you get a plastic gauge with lots of hole sizes to enable you find the correct size
This is caused by the leakage of the faeces and the enzymes in them breaking down your skin and causing soreness
If your skin is not broken but just sore you should apply a barrier film to your skin before you attach your pouch
If your skin is broken you could try stoma powder, which you LIGHTLY dust over your skin, THEN WIPE OFF ANY EXCESS before applying pouch if you don't wipe it off the pouch base plate won't adhere to your skin and cause more leakages.
Taking off the used pouch can cause soreness when you are removing it and you should use an adhesive remover, start at top and carefully pull off the pouch downwards
If you use adhesive remover please ensure that you wash your skin around the stoma very well otherwise your new pouch won't attach.
Adhesive removers come as wipes or from a spray can.
When you attach your pouch you should inspect all round the base plate to make sure you have good adhesion all round, you should have been supplied with a mirror to assist you. To give additional sealing of the base plate you could try flange extenders which make the base plate larger.
Any spot on your skin with poor adhesion your output will find it and cause a leak.
Leaks can be avoided with care in applying your pouch, you will no doubt have a visit from a stoma care nurse ask her to go over everything with you again
Measuring your stoma
Tracing the hole shape on to the pouch base plate
Cutting the hole in your pouch
Applying your pouch
Making sure you get good adhesion hold the pouch against your skin for about a minute
Please do join us over in the Ileostomy, colostomy and stoma support group where I can give you all the help you need to give your confidence to start living your life with a stoma.
If you have any questions, no matter how small don't hesitate to contact and I will answer you, I have also sent you a friend request please accept then you can contact me directly with any questions on any subject, even the ones that may be delicate to ask, I will answer ANY questions.
Hopefully you will get over your leakages very soon and get your life back on track very soon.
You asked for a tip, set yourself a cut off time for your last meal of the day, select a time between 5 and 6 pm to eat which should be a small meal, eating at this time will allow your food to pass through your body and you should empty your pouch before going to bed at which time you should inspect all round the pouch base plate and if you see any sign of a leak don't risk it change your pouch immediately, you may find that you may have to get up during the night to empty. Pouch should be emptied when it is ⅓ to ½ full,do not allow your pouch to over fill as this also can build up the pressure on the base plate and lift it off your skin.
Can I ask that you come back to me in the stoma support group (poo corner) or to give it the correct title Ileostomy, colostomy and stoma support group and let me know the following
The type of stoma you have Colostomy or ILEOSTOMY.
Are you using a one piece system or a two piece system
Are you using a drainable pouch or is it closed
This helps me to quickly answer your questions
I'm on site every day of the week, usually early morning till late at night, to answer any questions and give to all the help, support and advice you may need
My name is Ian and they call me The BODACH and I look forward to seeing over in the other group very shortly
Please do accept my friend request
On your first outing away from home, I want you to play Spot the person with a stoma game, look at everyone you see from the very young to the elderly, male and female, look closely, I can say with confidence that you won't spot anyone, obviously if you attend a stoma clinic that doesn't count!
See you soon
With 2 Certificates in Stoma Care and Management.
You can find me in * Stoma Support * Bowel * Carers * Anal * Family & Friends * Bereavement * Diagnosed at a Young Age * Parents of Young Children * New to the Community * Living with incurable cancer - incurable patients only / End of Life (and others)
Macmillan Support Team 0808 808 0000 Monday to Sunday 8 am to 8 pm, a delay in answering might be experienced.
The BODACH is LIVING WITH A ST● MA
Thank you I will come over and explain my journey now. I'm also trying to work out how to use this site and haven't seen a friend request. I will accept when I find it.
If you go to your PROFILE PAGE at the top you will me see an image of two heads¹ and it should have a "1" to the right click on it and you will see that I have made a friend request all you have to do is click on accept request and we're good to go.
Any problems come back to me anytime.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: