How to sleep with a Stoma

I’m pretty well rehearsed at sleeping with a stoma due to having one for 3 years from 2009-2012 & now a permanent stoma as of 11/2016. I am writing this as a guide and to give tips to other people and maybe help in some way. So how to sleep with a stoma. Well this is how I sleep.

So I’m writing how to sleep with a stoma.

Sore Stoma

My Sore stoma from surgery in 2016, This was due to leaks

My first experience with a stoma was rather horrendous, to say the least. I didn’t have a clue on what to do or how to deal with the leaks that were a regular occurrence.

I went through two mattresses. Threw away about 30 pairs of pyjamas and not to mention other articles of everyday clothing due to leaks.

After the first year, I finally got a handle on my ileostomy and how to protect my clothing and more importantly my bed.

After the initial surgery, you will only be able to sleep on your back until you start to recover and get used to the surgery pain.

The other key to trying to get to one leak in a blue moon is to make sure you’re stoma supplies are correct and for you. So please see your stoma nurse for regular stoma reviews and make sure that the size your cutting for your stoma is as precise as it can be.

Tips to protect your bed

  • Waterproof mattress topper
  • Plastic sheet
  • Foam topper
  • Conti sheets – you can lay these directly beneath you or between your sheet and mattress topper

Bed Linen

  • Go for darker bed sheets. I know everyone likes a white bed sheet. However, ileostomy leaks tend to stain due to the stomach acid. I pretty much gave up trying to get rid of the stains
  • Use an old pillow as a stomach support so if the pillow gets caught with a leak then it’s not too much of an issue to throw away
  • Go for patterned Duvet covers as it masks small stains that don’t always wash out

Pyjamas

  • Nighties are easier when you have leaks as I find a pooled mess in Pyjama bottoms is more difficult to clean in the freezing cold early hours of the morning
  • Darker colours as it masks the stain if it doesn’t wash out completely

Since having the ileostomy second time around I’ve only had daytime leaks 4 weeks post op due to the flange on my bag being too big for my ileostomy.

My sleeping habits have changed. I use a maternity pillow which I stick between my thighs and it also supports my stoma bag. I have a 6th sense and automatically wake up when my bag is full at the random hours of 1 am, 3 am & 4 am to empty.

Eating habits

With your stoma, it’s better to eat before 7 pm in the evening as it takes several hours for your food to digest and makes its way through to your bag. The later you eat then the likelihood of getting up more than once in the night is more probable and heightens the risk of 2 am pancaking and leaks. The main issue with leaks being the damage it causes to your bed clothes along with your confidence and sanity in the twilight hours. It can also cause damage to the actual stoma site and no one likes 4-7 days of burned skin.

Nightly stoma routine

I always have a bath around 9/10 pm in the evening every other day.I change my stoma bag around 10 pm before

Nightly change routine

Always try and have a regular change routine

Bedtime. Which is normally around 11 pm. Reasons for this are I don’t sleep well if at all on the days I don’t change my bag. I’m paranoid about leaks due to past experiences. My last partner stood there at 2 am screaming at me because I had leaked in the night and it had gone all over him. He proceeded to dig at me for about a month after the episode. I sleep a lot better now I have the convex bag and support belt. I’ve only had the one near miss and that’s purely because my stoma was rather windy and the build-up lifted the flange half way off and left a small mark on my white PJ bottoms.

Alarm System

For those of you with newly formed stomas, I would suggest having a nightly alarm system (sounds mad). But what this does is put your body into a nightly routine of getting up to empty your stoma and check the flange to make sure it’s not compromised at all.

  • Soft Alarm sound to wake you gently and not scare the living hell out of your partner or yourself for that matter
  • Set it for 2-3 hours after you’ve gone to bed as the stoma likes to be more active during your sleeping time
  • Always leave some sort of soft light source on just so you don’t disturb your sleeping patterns more than normal(toilet lights are brilliant)

All of this above will help to some degree. But you can’t always stop a leak, life’s a bugger like that. But if this helps someone to maybe get 3-7 nights of decent sleep before having the dreaded leak then I will be happy.

For any of you that need advice, help or just a let it go place then please follow Making Ostomies Cool on Facebook. It is the most lovely and inspirational people you will ever talk to. This is strictly for Ostomy patients.

 

2 Comments
  1. I’m sorry to hear you had such a rough first year or so, and still hjave regular leaks. In my experience that really should not happen, and I think that your stoma nurse should be able to advise you best.

    I’m goign to do a post on my site about this, because I really don’t think it has to be like that for you, or anyone!

    • Thank you ever so much for your feedback, Richard. Indeed the first time around with an Ileostomy was terribly frightful due to it sitting on an incisional hernia and open wound.Once the open wound had closed life did indeed get easier.
      The second time around My stoma nurse and surgical team were a lot more on the ball and helped me Immensely so this wasn’t a re-occurrence. I had several leaks post-op due to allergies to the bag I was using and have since changed this with my stoma nurses help. I still get the occasional night time leak averaging 1-2 a month.
      Many Thanks
      Louise xx

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