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Bowel cancer treatment and side effects

Chelts

Some tips on living with an ileostomy

Some of you may recall from my posts how much trouble I had trying to manage my ileostomy and particularly the leaks at night time, so I thought I'd share some of the things I have done, both myself and working with the stoma nurse, that seem to have made my life with an ileostomy much better......

1. Keep emptying your bag- don't let it fill up to near bursting point as, being fluid, it will soon find a weak point in the seals to burst out from. Overnight, during diarrohea spells, set your alarm clock to go off every 3 hours, so that you can empty your bag (believe me- waking up every 3 hours is much better than being woken up by that feeling of something warm and wet running down your stomach!)
2. Make sure you have the correct type of bag- the flat ones are pretty useless with an ileostomy as the fluid needs to be forced down into the bag rather then being able to seep under the seal. I find the ones with the raised baseplate work for me.
3. Reinforce the seals- I have found that using paste along with a wafer (or donut-ring as I call them) really helps prevent leaks. I also use the 'banana' strips to extend the stuckdown area beyond the edge of the bag edges. What really works for me is extending the area even further by applying a 2nd banana, over the edge of the 1st one.
4. Change your bag regularly- don't use the same bag for more than 2 days- the adhesion will start to weaken and you'll end up with a leak. I've found that the time to change my bag is as soon as you start to get a stinging sensation under the bag - this is a sign that some of the fluid is not going into the bag and is starting to work its way under the donut. (the stinging sensation is caused by the acids in the output coming into contact with your skin)
5. Be prepared for a quick bag change- there is nothing worse than a leaking bag and not having all the bag-change items ready to go. Ileostomies erupt like Mt Vesuvius when active during diarrohea phases and I've actually had liquid shoot out of the stoma instead of just running out of it. Try to time your bag changes to coincide with when Vesuvius is not erupting, otherwise you will get through loads of drywipes waiting for it to settle!
The window of opportunity to change the bag is very short, which is why you need to have everything ready to go, as trying to apply a bag to a wet donut is a waste of time and you will end up having to throw the bag away, as once wet, it won't stick
6. Try not to lie flat when sleeping- if you do, the output from the stoma will not drop down into the bag and will settle around the stoma and eventually work its way under the seals. Try and almost sleep in a sitting position.
7. Use the small absorbent-crystal pouches- they work wonders for absorbing and solidifying stoma output- thus reducing the risk of leaks

Hope you find these tips useful- they've certainly helped me and I can sleep at night now without the worry of the dreaded warm and wet feeling waking me up!

Cathy13

Thank you @Chelts for this. My husband has an ileostomy, and copes quite well with it, but there's definitely some tips here that we'll be trying out. 🙂 :x::x:

KittyMac

Spot on. This was exactly my experience. I did not have a single good nights sleep the entire time I had my ileostomy. First thing I did on waking was to check the wetness situation!

kw1983

Thank u @Chelts I’ve had my ileostomy for 5 weeks now and find these tips very useful. :x::x::x:

Spanner

Regarding the liquid output, my wife was advised by the stoma nurse to eat jellie babies and marshmallows to firm things up while she had the ileostomy. She found it helped her greatly.

Jomo9

Thanks for this post @Chelts. Definitely some useful tips that I wish I had known three months ago. You actually made me laugh out loud at (1) as that’s the experience I used to have before my regular 2.5 hour alarms. One night I changed bedding and pjs three times... I love the Mount Vesuvius description - it’s so accurate, especially with the occasional fireworks! And @Spanner I have a worrying addiction to haribo now :x::x:

Chelts
Quote from @Spanner:
Regarding the liquid output, my wife was advised by the stoma nurse to eat jellie babies and marshmallows to firm things up while she had the ileostomy. She found it helped her greatly.

I was told that too @Spanner but find the small bags filled with crystals are the best for firming things up.

JulietheMeezermum

Hi @Chelts glad to hear you are getting better control . Love your description of vesuvius. Hope you are doing ok and if you are over this way for an appointment give me a shout . Take care

GROBER

I found that using a spray on releasing agent when removing the sealing ring helped prevent skin irritation/damage round the stoma. [ Just be mindfull of any allegic reaction to the spray]
e.g Coloplast Brava [ other makes will be available]
www.coloplast.co.uk/brava-adhesive-remover-en-gb.aspx

Northwesterly

What are these bags of crystals of which you speak? They sound like a good thing!

Northwesterly

Thanks Chelts!