Hate this ileostomy

Hi . Sorry to hear that you’re struggling but it’s early days yet so please don’t get disheartened. Normally convex bags are given to sort of raise the stoma away from the stomach as there may be uneven bits where you’ve had the surgery? If you don’t like these sort of bags then have a chat with the stoma nurse and see if there are other suitable ones?

Top tips got emptying? I tried to do it sitting on the toilet but never managed it so used to kneel on the floor although it’s not good on the knees. Put a bit of paper in first to avoid splash back and try and aim down the side of the bowl. The smell from my bag for the first couple of weeks was not very nice but it seemed to settle down after that unless I’d had fish and chips! I’d then clean the bottom output bit of the bag with a bit of toilet paper and then fasten it back up.

Changing. Set your stall out with everything you need. I used to do it over the bathroom sink and have everything lined up on the window sill and toilet paper to hand. I also had a little mirror propped up. I used to remove the bag with the removal spray and put it in the poo bag then clean off the worst with toilet paper. Id then wash the stoma and surrounding skin with a damp wipe and dab it dry with kitchen towel or a dry wipe. My stoma was a bit floppy so I used to struggle getting it out of the way to get the bag up close so I used to use a quarter of those rings and just put it on the bit that tended to get sore then put the bag on. I then ran my fingers round it pressing it on well and then held my hand over it for a minute -this warms the adhesive so you get a good seal.

Your stoma will change in size over the next few weeks so it’s important to measure it regularly then cut a couple of bags to size - there’s nothing worse than nearly getting the bag on, the stoma having a spurt and you have to start over again only to find that you need to cut another bag. Once you’re stoma has stopped shrinking then you can get your bags pre-cut from your supplier.

Try not to panic and fluster - you will get into a routine and be able to do it in 5 minutes before too long. I never had to change my bag when out and about but always had a little emergency make up bag with me with a kit in just in case. Do you have a disabled toilet key? My nurse gave me one but I think you can get them online. It’s handy to have for some places as the toilets are bigger and better equipped if you needed to do a change.

Hope this helps. It’s a while ago that I had my bag so hopefully a few of the others might be along with some more up-to-date tips but if there’s anything specific that you’re struggling with then please ask

Take care

Karen x

Oh Shebu, I do feel for you having been in exactly the same position just a few weeks ago.  It does get easier though, honestly.

Take your time changing the bag.  Like Karen says, have everything to hand before you start and have a couple of spare bags cut too.  I usually change mine after a shower - I put the new pouch under the towel I'm using to dry myself off and then sit on it to warm it up whilst taking off the used pouch (sticks better).  I also line the disposal bag inside an old soap powder box to hold it open and keep it stable (that way, once you've removed the used pouch, you can work with one hand and use the other to hold some paper towel over the stoma to try and keep it under control till you get organised!).  The smell does improve too, but I've also been using some drops of peppermint oil in the pouch which makes a big difference.

Remember as well that you've just had major surgery which you're still recovering from so don't be too hard on yourself.  I honestly thought that I'd get out of hospital one day and just get on with my life (albeit a bit slower) the next day.  It didn't work like that!  It's been just under 10 weeks since my op and it's only in the last couple of weeks that I've started to feel more like my old self.  Yes, things are different to what I'd like but it is getting easier

I'm sure others will have some more tips for you too.  Take care & best of luck.

I so get how you feel but remember the stoma is part of the process to save your life. I gave mine a name so I could curse it but finally thank it. It is such early days, only 9 days ago goodness you must only just of got home !!@. You need a big mirror so you can see what's going on. Take your time changing it. Lay everything out you need and take your time.

As it's new you may need other products, contact your stoma nurse and keep seeing them until you are confident changing and your skin is pain free and healthy. 

It's new to so many of us, keep asking questions we can try and help xXx

Hi Shebu,

Sorry to hear about how you are getting on with your ileostomy. I had a temporary one for a year and it did take a few weeks to get used to it but once I accepted that it was helping to save my life and that it might be reversed as some point it just became part of me.

I can absolutely relate to Karen's and Blueblue's advice and I used to do most of the same things. The only difference was that after starting off emptying it by kneeling I found that if I sat far enough back on the seat it was more comfortable that way. I wont try and add anything to what they have said except  to say to try to build a good relationship with the stoma nurse, they have so much experience and know how to overcome any of the worries you may have. Also, if you don't get on with one product there are plenty of different ones to try.

You will succeed!

All the best, John

1. Sorry you are having such a tough time.

Try to relax(harder said than done)  about emptying and changing the bag.I couldnt empty sitting down initially as my Barbie butt took 6 weeks to heal,so I did it standing up.can now empty sitting but just do what you find easier.there is no right or wrong with this.

Changing I do alternate days first thing as my stoma is less productive then.like karen I do it over the bathroom sink and have got the time down to a couple of minutes.I tend to have a shower first,with the bag attached,so I can then attach a nice fresh dry bag .

I cant add much more to what the others have said.just do what is comfortable for you.there is no right or wrong way as far as I can see.

I do keep all my supplies easily accessible in one drawer so that I can easily grab everything I need to change the bag.

I always carry a small bag of supplies in my handbag along with a toilet key but touch wood havent had to change the bag when out and about in the two years I have had"fred"

All the best.you will get this sorted

Kath

1. yes it's tough- I found my illiostomy more tricky than the colostomy. I also had a high output one. It will get easier with time. You will get used to it. Just take one day at a time.