Newbie

Hi Ali Bali and welcome to the board although I’m sorry to hear that you’re struggling. Please be kind to yourself and not expect too much - I was told 5 weeks recovery and that was for a basic Low Anterior Resection. Your back may be aching from lying on the hard operating table or from doing too much - I found I had a horrible pain right in the bottom of my back/top of my bum after walking across the supermarket carpark but the nurse said it was everything settling back down inside and generally healing so to just take it a bit easier the next day.

The stoma can be a shock initially but you will honestly get used to it and get into a routine. I used to set my stall out on the bathroom windowsill and stand over the basin to do it with a mirror in front of me. I’d remove the bag with the spray and put it in the waiting poo bag. Clean off the worst with some toilet paper then give the stoma and surrounding area a wash with a wipe and water. I’d then dry the area with a piece of kitchen towel or a dry wipe and pop everything in the poo bag. Some people like to ‘warm’ their bag as it helps the stickiness so you could pop it under your arm or on a radiator for a minute or so. I used to then apply the bag by looking in the mirror and, once in place, press all around the seal to make sure it’s firmly stuck - I then used to hold my hand over it for a minute to make sure it was stuck firm.

I used to have a few bags cut ready. I used to get the stoma nurse to measure my stoma at each checkup and cut me a couple of bags. I then used the plastic peel off bit as a template and rolled and fastened the bottom ready to apply. Once your stoma has finished shrinking after a few weeks then you can arrange for your bags to come pre-cut from the supplier.

I seem to remember the contents of my bag being quite smelly in the early days but it did settle down a bit although certain foods do have an effect - be prepared to open a window after fish and chips! Try to think of your output as digested food and although you may feel conscious of your bag you can bet that people walking past you in the street will be none the wiser.

Im sure in a few weeks you will be feeling much better but please post if you’ve any specific worries and someone will be sure to help. Have a look at the stoma page too?

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

Take care

Karen x

Hi Ali Bali,

I only had my surgery 8 weeks ago and found it a huge shock and struggle at first to deal with my stoma. Like you I used to feel sick, even emptying it madame retch. I initially wore a mask as found the smell the biggest problem. Now 8 weeks down the line i have no problems dealing with it. I even went out for dinner last week and had to empty my bag whilst I was out. If you'd asked me 7 weeks ago I would have said I'd never be able to do this. I totally understand where you are but honestly it wiiget easier, in fact it will become second nature to you. Also I had back pain that probably took about 2 weeks to settle so hopefully things are getting better for you. If I can help in any way please feel free to message me. You are not alone, please remember that.

Carol x

Thanks Carol at this point I have resigned myself to never seeing anyone again, I can’t even imagine going out! Like you just having to empty the bag let alone change it is horrific. This morning all the glue from the bay was left on my skin and it took me 20 mins to pick most of it off and there was still some left, I have no idea how to get this off or avoid it happening again? I am having to force myself to eat too as I have no appetite. Thanks for your encouragement fly best friends name is Caz I’d like to see her this week but the thought of a visit from anyone is terrifying x

Ali Bali,

I was exactly the same, I put visitors off from coming to see me and thought I would never leave the house again. But time certainly is a great healer. Have you had you follow up appointment with your stoma nurse yet? If not   I'd call them and request adhesive remover, which helps in removing your bag and the glue. I also use a barrier film to help protect the skin where it sticks and its a bit easier to come off with that too. You can also request free samples from some of the stoma sites online.

I am a qualified nurse of 40+ years and have had some experience in dealing with stoma on others but I really struggled with my own. I didnt want to eat and lost almost 2 stone in weight post op. I still can't eat certain foods as they make me nauseous and find I can only eat and drink things with a stronger flavour, like salt and vinegar or picked onion crisps lol, or chips with lots of vinegar. I suggest small meals frequently and I was advised not to drink lots of water. My saviour was lucozade with all the fizz removed.

Is your stoma permanent or temporary?

I hope this has been some use to you. Let your friend come visit it really will make you feel better, even if its just someone to vent to, we need others around us

Take Care xx

I am hopeful it’s temporary that is what the surgeon said, I haven’t had my follow up appointment it’s next Wednesday. I was told not to put anything on my skin at all as it might stop the bag sticking. I will request adhesive remover next week, what barrier cream do you use, I have also been told to stay off water and have been drinking sport lucozade as it isn’t fizzy, thanks again xx

Dear Ali Bali

I found that using Cavalon both helped the bag to stick and also reduced the risk of rashes and irritated skin. 

3M Cavilon Barrier Film Foam Applicator, 3 ml,

You might want to ask the stoma team about this and getting it prescribed. 

Hi Ali bali

you should be able to get everything from your stoma provider, I myself are with frittleworth and they provide everything from adhesive spay, wet wipes, dry wipes and a protective cover for the bed in case of leaking. 
I know that bullpens do the same. 
hope this information helps, best wishes 

• skye3

Hi Ali Bali 

Reading your post reminded me of how I felt. I joined the stoma support group and things improved quite quickly. Talking to others really helped. Karen and Caza have said all that I would, I just wanted to add 

You should have had remover spray on discharging as your skin will be sore by pulling it off.

 At two weeks I had a melt down I dreaded changing it every other day it was traumatic. Yes I was a drama Queen but I really felt at the end of my tether. I was on heavy pain med no sleep and this smelly stoma to deal with. I put mints in the bag, burnt matches after emptying you name it and I did it. 
Then I had a Poonamie, phoned my nurses and bang 

Sorted…..I came out of there a different person 

They changed me to convex pouches Eakin slims for my poor burnt skin and belted me up. 
The smell lessons and the stoma forms it becomes second nature. I was in and out of the toilet quicker than before. Travelling eating out and enjoying life. 
You are early days and once the nurses sort out your products you’ll find it so much better

I drank the cheaper isotonic drinks they were about 50p non fizzy plus pints of weak Vimto. Having an Ileostomy I dehydrated really quickly and felt unwell. 
I kept a food diary and introduced slowly but surprisingly my diet was healthy and colourful in no time 

Take care. You’ll get there. 

Hi Artsie Ann, yes im having a tough time of it. Firstly when my surgeon phoned he said i should have been discharged with loperamide which i wasn't so basically my bag was filling up really quickly and it was just fluid I have the tablets now and they are making a difference. Can i purchase remover spray locally rather than waiting for it to come from the internet? the other day my skin was actually pulled off and was bleeding quite badly. Any tips on how to minimise the odour as i feel like vomiting when I empty the bag and as for changing it!!!!! I am due to change again tomorrow and im dreading it, ive phoned the stoma team 2 days in a row now and nobody has got back to me yet, I realise they are busy and have other patients and dont want to seem like a diva, like you I am not sleeping at night but feel my pain killers could have been much stronger x

Thanks Ali Bali xxxx

Thank you x