Ileostomy stoma bag advice

Hi Melly73 and I’m sorry to hear that you’re having such a hard time of it. The stomas in a dip can be quite tricky but I understand that the convex bags are the best type for ‘pushing’ the stoma out. I think you can also get a sort of paste to fill the dip? The best person to speak to is your stoma nurse as she will have lots of different bags for you to try. It’s also important to measure your stoma every few days before cutting your bags as the stoma shrinks quite significantly in the first few weeks and if the hole is too big then the skin around it can get sore. If you can manage to only change your bag every other day then that might help. Do you use a removal spray when taking the bag off? 

Can I suggest you post on the Ileostomy, Colostomy and Stoma board as well as there may be a few who can help you? I’ve attached a link below to a recent post from someone experiencing a similar problem

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/new-here-say-hello/221536/new-here-can-t-find-the-right-product

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

Please don’t get disheartened - it will improve but sometimes it can take a few go’s before you find the perfect bag but you will get there - honest 

Take care

Karen x

Thanks Karen. I do use a removal spray which is great.  The stoma nurses I have are great and we are trying different bags, but it's good to hear tips and advice from others too.  I I didn't know about the paste so I'll ask the nurse when she visits next week.

Thanks again

Mellyx

Hi Melly73,

Sorry to hear of your problems, I think having the stoma in a dip is a problem and the convex bag is supposed to be best. I think the paste, which I tried, is for filling irregular dips around the stoma.

The products I found good in the year I had the ileostomy were Stocare Removal spray and Protect barrier spray ( not only helped protect but helped adhesion as well) together with Coloplast sealing rings. (no Manuka but very effective) together with Salts bags. Salts do all sorts and stick well. If sore I just used calamine lotion. It is essential that the skin is really dry before putting on the bag and worth warming the bag under your arm and holding your hand over it for a minute or two when on.

The only leakages I had from this kit were caused by me!

All the best in finding a solution, John

Hi I dont want to repeat what others have said but just to add that if all goes well you shouldnt worry about changing the bag in public toilets.I change mine alternate days at home and although I always carry spare kit with me have never had to use it.

All the best

Kath

Thanks John

Hi kate, 

I'm hoping that will be the case for me too. 

Thanks 

Melly

hi! I also have problems with my stoma, leaks, infection, etc. My nurse gave me the bell to support the stoma bag and it’s great. I put it on when I change my stoma bag so it helps to close all the open bits (near my belly bottom) ask for one, I hardly recomen it. I take it off once I’m sure there won’t be a leak.

Hi Melly 73.

Well done re getting through the surgery, but sorry to hear you’re having a bad time with leaks, they are so depressing and demoralising aren’t they. It’s early days yet and hopefully things will settle down. I had lots of leaks while in hospital but they reduced for the first 4/5 weeks once out of hospital and using a convex bag. They then started again and I was having up to 4 leaks a day and it was really getting me down. I posted on here and got lots of useful advice and this is what now works for me. I’ve been using this for almost 6 months now with only 1 leak which was after the stoma nurse changed the bag at a review appointment (I don’t think she didn’t take the time to put everything on properly).

I use:
Adhesive Remover, then just warm water to clean the area.
Salts Aloe rings (Ref: SAR25) – this sort of puff-up as you’re wearing it and creates a good seal
Coloplast Brava Skin Barrier
Coloplast Sensura Mio Light Convex bag with belt ears
Coloplast Sensura belt

If my skin does get sore and a bit weepy the Stoma nurse gave me some powder which I use then dust off with cotton wool before applying new bag etc.

I make absolutely sure my skin is completely dry before using the barrier spray and the barrier spray is completely dry before attaching the ring. I warm the ring first then spend about a minute pressing it to my skin by running my finger around it. I then attach the bag (again after warming the seal) and spend another minute pressing the seal before attaching the belt. I wear a belt 24/7.
Earlier on as an experiment I left the bag on to see how long it would go without leaking, after 5 days it still hadn’t leaked, but I changed it anyway as I was rather concerned at how long I’d had it on!

Hope you find a solution that works well for you.

Take Care,

Net77

Thanks Net77.  I'm so thankful for all thegreat advice I'm getting. Ive got a brill stoma nurse so have been doing everything you suggest. I guess it's just about getting the right combination of products. I'm going to ask my stoma nurse about the aloe rings as they sound really good. I think a belt might help too; I'm using a convex bag with the little loop fasteners at the side anyway so using the belt too might just keep it that bit tighter.

Many thanks Mellyx