Stoma bags.

Oh I’m sorry Rosie 

You really are having a rotten time. From the very beginning it’s been one thing after another. I really feel for you. 
I had terrible sore burnt skin around my stoma with constant leaks. I phoned my stoma nurses and they said two weeks I told them I was bleeding and my bags were leaking  

Yes I was a Drama Queen!

They switched me to convex bags with optional belt and Eakin slims. That was a game changer for me.

Now I’m tagging SarahH2 as she has lots of experience with getting various styles and is knowledgeable in the products 

Sore skin can be soothed with a little calamine lotion lightly dabbed on the sore skin and dry with a fan or cool hairdryer. See if you can air the skin for a little while too. 
Katz has experience of this too

I tried the foam type too but sadly Whoopi was busy and the foam was not as secure.

I’m allergic to loads but I was okay with the convex Sensura mio. I was allergic to the flat ones though of the same brand. My skin flared up instantly.
So you may find the convex ones will not irritate 

I did have it explained to me here why the flat one’s irritated and the convex didn’t but I can’t remember 

Take care Rosie x

Hi MissTee

Oh Rosie, you’ve had such a hard time. So,  I have a colostomy and could recommend a couple of things. The company Welland  do bags with Manuka honey which I have tried and which are very soothing. Also, Trio healthcare have just brought out a new bag with a very nice soft silicone seal which makes a difference called Genii. I’m not sure why you would need a 2 piece system with a colostomy…you might find you could manage better with something simpler. If I were you, speaking with more than 2.5 years experience with an end colostomy. I would use a neat, closed one piece system. I use Salts confidence B bags..available in nude, white or black. They are very small and neat, and don’t irritate my skin at all. I’ve personally never used 2 piece systems. I like a nice flat bag, so as soon as I have output I change the bag-takes about a minute. I can go up to 3 days without any output but would take some orange at that stage to encourage things along.

Sarah xx

Hi MissTee

I'm so sorry that you're having such a horrible time but once you get sorted with the correct products it will get better, I promise you.  Like you, I've had problems with allergic reactions so there was a lot of trial and error in the early days.  I actually ended up with a Pelican Platinum with Vitamin E pouch which I'm very happy with.  However, it has the foam type daisy shaped seal that you seem to have problems with. The other  OK ones I trialled, which have the same type of fabric type seal as the Dansac ones that they give you in hospital, was the Hollister CeraPlus one. It doesn't contain any latex or rubber so might be worth a try.

Sorry, I can't offer any help with output, (I'm an ileostomy so never any issues there!!), but hopefully your stoma nurse can give you some advice for that if you're wary of drinking orange juice.  I still drink orange juice but dilute it down a bit - half and half with water.

Good luck x

Hi Sarah, I've tried Pelican and Salts and I'm allergic to the adhesive, I've been using Dansac closed bags, I was told about the 2 piece bags by a stoma nurse at the hospital where I had my op, as usually I only change it once a day, and as I can become irritated by the on and off, she thought 2 piece may help. I'm still new to this, and my local stoma nurses don't seem to have ones I'm not allergic to, so I'm sourcing free sample, I've had some from amscare,  with manuka honey, which I'm ok with, and some other suppliers, but some don't do the flanges or flange extenders, or barrier spray,  and I'm trying to get a prescription sorted, I see the stoma nurses again tomorrow.  Other than that other half had to drive 90mins to go get some bags from hospital where I had the op, instead of 10 mins to local hospital. Its a mine field, how on earth does anyone find suppliers of everything?!! I will dew what my stoma nurse says tomorrow. Thanks for the help. 

Hi Rosie

When I came home my stoma nurse who visited very regularly sorted out everything with supplies and samples-she was affiliated to a stoma supply company, although I have changed supply companies twice since then. It’s difficult to get everything sorted out at the start of all this process, and it’s difficult to find help and advice. It took me a good few weeks to get everything running smoothly. The stoma nurse will hopefully be a good source of advice-mine was lovely and I couldn’t have managed without her. 

I use a mixture of companies for my supplies-all on the same prescription through the same supply company-salts for colostomy, Hollister for urostomy, and I also get flange extenders, and extra adhesive sticks, all different brands. You can just mix and match once you find things which suit. It does become easier, I promise. 

Sarah xx

Hi Miss Tee, I struggled for quite some time to find the right pouches for me, and it didn't help when I developed a parastomal hernia.   Have you tried Fittleworth,  a stoma fulfillment company, based in Sussex.  They are good.  Hope this helps.  

All help is gratefully recieved and I do feel very new to this, and my stoma nurse says I have to use the company that they go through, but they don't do any samples, I don't know what products they hqve, I only know that I'm ok with Dqnsqc bags, and she said they do, but nothing about the flanges, extenders or other accessories,  I will have a call from them, hopefully later today, but that's all I know, she says she's added the adhesive remover spray, which also doubles as a barrier spray, so I'm jot sure what to expect, as I've had some samples,one was really good, stuck well, and didn't aggravate the rash I  already had from usi g a pouch that I was allergic to, I asked, she said that they'd be too expensive, as they had manuka honey that helps the skin to heal. I have 2 stoma nurses, one is very good, the other is very matter of fact, and you can't have a conversation about anything without her looking at her watch.

You are being misinformed. You don't have to stick to your stoma nurse's affiliated company and you can get your GP to add items to your prescription. You can request samples online from any company without committing to using them and cost of pouches shouldn't come into your decision. There are many supply companies. I was originally signed up to Medilink but now use Coloplast Charter. It should be your decision once you have decided what is best for you. Good luck!

Hi Miss Tee

I understand where you're coming from in regards to trying to navigate this yourself as I had much the same experience. I didn't see a stoma nurse either before my op or in the weeks afterwards (no-one in post).  In fact, it took 4 months to get a face to face appointment although I did get 2 telephone appointments before that.  So, I took matters into my own hands.  If you go online and find the stoma supplies manufacturers (Dansac, Salts, Pelican, Hollister, Coloplast - I think that's the main ones) you'll generally find that they will supply samples to you direct. Just click on the items that you're interested in and it will tell you if they supply a sample or not.  I tried quite a few different things this way and even managed to find the ideal pouch by myself.  Was told initially that it was too expensive for my prescription but, as I don't get anything else on prescription, they decided that it would be ok.  Some of the companies might phone you up to discuss the sample you've requested but I found them all very helpful.

The company who sends my pouches is Respond and they phone me every month to see what I need.  They also do their own line in sprays, flange extenders and other accessories which I've also had samples of.  My adhesive removal spray is from them.  I order and pay for that myself and it comes direct from them with the regular prescription (not allowed adhesive remover on prescription in Scotland).  They too are a good company to deal with and very helpful.

Are the Dansac ones you use the clear ones without a front cover, hospital issue?  If so, my stoma nurse told me that these are more expensive than the other options.  I think that was one of the reasons for letting me keep the pouch I found myself as, if they hadn't, I would have needed to stay with the Dansac hospital one.

Don't despair.  It will improve.

Hi MissTee.

As Sarah has said  the Welland pouches with Manuka honey are very good. Lots of their care product contain Manuka honey. You do not have to stay with the supplier your hospital set you up with. You can order samples online from lots of suppliers to get the best products for you.

Take care 

Kim x