Lacking in confidence.

Things will get better. Hope you meet a nurse soon as they are very helpful, mine were. You can get fastening strips for round the end. I found that the banana shaped ones were the best. Accidents will happen but you can minimise the incidents. By the way I am now bag free, had a reversal last December after about 10 months with "Gollum" as I called it. Very best of luck I would push to see the nurses as they can set you at ease. Peter.

Hi BluBlue

Did you find any particular difference with the original bags that seemed to work ok and the ones you tried?  Also, if you haven't had much time with the stoma nurse has anyone given you good instruction as to how to fit the bags?

I used Salts BE Confidence bags for the year I had my ileostomy. Because I had a distorted area at one side of the stome I also used a seal from Coloplast. These are double sided adhesive flat rings that you mould around the stoma and put them on the skin before the bag. I also used a barrier spray called Protect that helped protect the skin and also helped adhesion.

When you change the bag and clean the area around it must be dry before you fit anything, don't use creams, powders or soaps that might prevent adhesion, warm the bag slightly, under you arm for instance, that also helps adhesion and keep you hand over the bag for a while to help warm it as well.

As you progress the stoma will shrink so you need to make sure the hole is cut the right size to fit snugly. The wafer seal can help and also you can get flange extenders you can put on the flange of the pouch to give extra adhesion.

You will find find a product that suits you and you will get a routine that works for you.  I hope you get a raport going with the stoma nurse as I found mine really helpful.

All the best

John

Hi BlueBlue. You’ve had some great advice so far. I also used to use the salts confidence with aloe Vera and also the mouldable seals. These are little pliable rings and I used to tear them into quarters and put it on up close to my stoma to fill the gap where I never seemed to get the bag tight enough. I then used to apply the bag and hold my hand over the wafer bit to warm the adhesive and get a firm join.

I always wore big knickers as I felt it supported the weight of the bag and never let it get more than half full before emptying. I also carried a little emergency kit with me with wipes, spare knickers, spare bag, removal wipes (although I prefer the spray generally). I also had a key to the disabled toilets. My nurse gave me mine but I think you can also buy them online and also little cards which you can show people to say that you have a medical condition and urgently need to use the toilet.

Im really surprised that you haven’t seen a stoma nurse - that’s really not acceptable - but well done you for getting to grips with it on your own. I think I’d be tempted to get in touch with them yourself and just ask for a checkup appointment? Your stoma shrinks in size over the first few weeks so I used to see the nurses fortnightly, get them to measure the stoma, cut a few bags and then I used the pull off plastic bit as a template. Once it’s stopped shrinking then you can get the bags pre-cut to size from your supplier if you want

Hope things start to settle down again for you

Take care

Karen x

Thank you so much everyone for your replies and helpful advice.

So far I've found the bags that just have a fairly narrow silicon ring to be the most unreliable (leak at the sides) so will definitely avoid them.  The ones that have a bit of fabric in addition to the silicon ring (Hollister or the basic Dansac ones from the hospital) have been absolutely fine which is why I just can't understand myself for suddenly not trusting them. I do warm the pouch up a bit before I stick it on (the surgeon himself gave me that handy hint).  I didn't know that you could get extenders so I think I'll ask the lady from Respond (who send my supplies) if she can send me a sample.  If that works then I think I will feel much more secure in future!  I also have a Salts pouch sample still to try so I've cut it out ready for tomorrow.  Phew - progress!

I'm not expecting any sort of appointment with the stoma nurse but if worries continue then I'll give her a call. 

What a great lot you are - many thanks again.

• Hi BlueBlue. The stoma nurse should have seen you by now. They have regular clinics and you can phone to ask for an appointment.  It is not reasonable to expect you to do this on your own. It's a minefield and they should be advising you on different products. When I first had a temporary stoma 14 years ago they used to come to the house. I had lots of leaks until I  was advised to try a convex 2 piece. This is a separate flange that you stick around your stoma and a bag that clicks onto flange with a Tupperware type connection. I never had any problems after that. The convex type is for stomas that are in a bit of a dip or don't stuck out very much.. When I acquired  my present stoma I requested the same product and it was 100% reliable until my stoma shrunk and changed shape. You can go online to the various companies' websites and request samples, but your stoma nurse would be able to give you samples in clinic. It will get better eventually but it can be a lonely time when you're struggling in the middle of the night. X

Respond are part of the Eakin group who have a national network of stoma nurses and will visit if you ask.

Seals are great, but I was exploding for ages before I got a convex bag large enough to cope with my telescoping nut, but the real hand changer was some extra tape, which stabilised everything!  Call your hospital and get them to sort you out with a nurse.  They're lovely and will try you with things that work for you. 

Hi Folks, A progress report;

I phoned the stoma nurse and she kindly dropped off some samples of flange extenders for me to try.  That was a couple of weeks ago and she was going on holiday but I can phone again for an appointment if I feel I need it.  It was nice to see her face to face.  She also arranged for some additional pouch samples to be sent out to give me a bit more time to make an informed choice.  I've had the same negative issues with the same ones though so I know now to definitely avoid these at all costs!!  I'm sticking with the original hospital issue pouches for the time being as they're the ones I've felt most confident with - I add a flange extender if I'm going out for the day as a belt and braces safety net which has helped me feel a lot less anxious.  Because of this I've gone out and about a bit more, to restaurants etc, and forced myself to use public toilets.  It's still early days but by making myself persevere it's getting a bit easier.  (Meant to be going on holiday soon so I really need to get on with this)

Thanks again to everyone for all your helpful comments and invaluable support.

Hi Blueblue,

My Operation was the 4th August, I was sent out of hospital five days later absolutely clueless on what to do.  

The stoma nurses were fantastic and changed my bags to convex with a belt and as my stoma looked inflamed they gave my Eakin rings that protect the stoma and stop leaks.. they really gave me confidence.

I would definitely recommend you asking for some.