Daily Life
First thing to get into your head is how many people you have noticed that they have a bag?
If you are like us the answer is none, we know people who have a bag who have told us they have a bag, but as I say there are none we noticed ourselves. this should alay fears that people will notice your bag they do not unless something happens to bring it to their attention, like you tell them.
After a While you will find that the bag impinges less and less on your life, in fact some people will feel they have their life back.
When the medical team talk to you about an ileostomy they may give you videos to watch and books to read. The general impression given is that all will be well and do not worry about it. What can be skimmed over is the time it takes to get to a position where life becomes almost normal again after the operation.It is different for everyone. The person that has been ill and unable to eat properly will notice the difference in their life quickly compared to the person who has been feeling well because their disease had been caught early.
It can take upto a year to fully recover and adjust, be assured eventually things will become easier and you will enjoy life again.
You have to learn which system is best for you and your body shape. Which system does not leak for you. Yes sometimes there can be a leak but there are devices and accesories to help with this so do not worry too much.
You will see from the many sites online dealing with ileostomy that it is normal for your stoma to show drops of blood when touched this means it is healthy What I havent seen too much about is when you stoma goes into a concave position which can cause your bag to leak. To counteract this you can get concave bags these are not so comfortable as normal bags but they can help the stome raise back up, as it were ensuring less chance of a leak . You can also get Flanges which extend the sticky back of the back so the bag has a greater area to adhere to and therefore reduces the chance of a leak and gives you much longer to realise that a leak is pending.
The best way to ensure that life returns to near normal is to be organised. Get a routine going, as you get used to the routine the less time it will take to change your bag. If your WC is in the bathroom use the lid as a table. If not see if you can get a shelf put up in a convient place for you. Once you have a place to work from. Make sure everything you need is to hand. If you cut the hole you will need a new bag, scissors, a small tub of warm water, wipes, a disposal bag, if your skin is a little sore the special powder to dust you skin, Do Not Use Talc or creams as the bag will not stick.
In the UK all these items are either on precription or given as complimentary items by the company dealing with your supplies. Some companies will organise the prescription for you although this may depend on the system employed by you surgery.
When travelling it is probally best if you have had a leak or two to pack your travel kit ie. spare bag little pot for water ,wipes scissors, disposal bags ect. with spare clothes for a quick change if needed always best to be prepared.