#Bagroulette How I Sleep With A Stoma

#Bagroulette How I 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 with mine.

Please be warned this contains a bare burnt stoma due to leaks.

 

#Bagroulette How I 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.My stoma was sited on top of an incisional hernia. 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.

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

As long as I have the protective sheets under my top sheet anything goes for bed linen

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 had leaks 4 weeks post op due to adhesive allergies with the Hollister bag and the base plate was too big for my stoma site.

I’ve had the odd night time blow out with the bags but that’s normally alcohol or Thai curry induced.

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.

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.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.

I’ve had other ostomates on Instagram who tell me that they still use the alarm system to wake them up for a night time empty a year or so after having their stomas formed.

My friend Rachel a fellow blogger also uses the alarm system and has two alarms due to high output and a prolapse with Bob her ileostomy. Please check out her blog post on how she sleeps with hers.

  • 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

In time your body will get used to waking up when it needs an empty. It’s like having a sixth sense. So you may not need the alarm after a while.

Summary

8 months post op I still don’t always sleep straight through the night. I now have the biggest Pelican bag they have to help with night time output. I’m now averaging one or two wake-ups to empty due to high output in the early hours of the morning. At least once a week I sleep straight through the night which leaves me with a spring in my step.

I can stay in hotels and not panic about my sleeping arrangements. However I’m still slightly worried about staying at peoples houses just incase I leak in the night. Hopefully this paranoia is something I will overcome in time.

I was offered the night time drainage bags for my ileostomy but declined the offer as didn’t want to be restricted to my bed and due to allergies to adhesive on the bags I didn’t want to open pandora’s box on that one as my skin around the stoma is now pretty healthy.

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.

 

6 Comments
  1. Hi- I’ve had my ileostomy for 49 years -1968 (Crohns Disease). I did have the odd leak at the beginning – bags had metal face-plates back then. In the early 80’s I tried my first disposable bag – Eakins – and used it for about 34 years til it went out of production a couple of years ago. I had the awful task of finding a replacement and tried quite a few different bags including SenSura Mio 1 piece which I now use. I use flange extender strips to complete my bag change and give me extra security as my bag fills. Thank God I’ve had only a one leak – didn’t put the bag on properly (I discovered. I empty my bag before bed and have no problem sleeping. I usually get up around 5/6am to empty my bag.

    As a rule I change bag every 4th morning at 8am before breakfast as this means my last meal was at least 12 hours before, so “His Lordship” is quiet whilst I change making change easy. At times the 4 morning routine may change if I’m doing something and don’t want to have a change on a particular day.

    I think perhaps as best we can we need to take time to clean skin off when changing, use the barrier film we find best taking time to let it dry and carefully put on new bag. Make sure everything is sealed/stuck down as well as possible. Use flange extenders/belts whatever suits best to support the weight of the bag as it fills. The drag caused by the weight could loosen the bag. Have you ever weighed yourself before and after you empty a full bag? No wonder it might become unstuck!

    All the best. Paddy (Pamela)

    • Hi Paddy (Pamela)

      Thank you ever so much for taking the time to read my blog post. Thank you for giving some insight into how you got your stoma and how the original stoma bags were designed. I do believe they have come along way in making them more user friendly in the last 30 or so years. I’m now going to research how the original stoma bags were for users as I find the metal baseplate fascinating.
      I’ve yet to weigh myself in the mornings with a full bag but can hazard a guess at how much the blasted thing weighs. Hoping your bag regime works well for you. I change mine daily due to extremely high output and bile salt malabsorption.

      Many thanks
      Louise xx

  2. Thank you for your post about sleeping

    • Hi Joyce,

      Thank you for taking the time to read my blog post about How I Sleep with a stoma. Hoping you gained some advice and tips from the post.

      Many thanks
      Louise xx

  3. Thank you for sharing your tips! I’ve had a very high output Ileostomy for 2 years.I use a convex drainable bag,and empty through the night anything from 3-6 times! I also have bigger high output bags,that I connect to an even bigger bag when I can’t take another sleepless night,however like you,I don’t want to tempt fate by changing from my day bag to a night bag every night.My skin is good and I don’t want to risk it breaking down,also I think if my bag has a good seal,I don’t want to risk putting a drainable night time on incase that leaks.Damned if you do and damned if you don’t! Lovely to read a blog that I could relate to on so many levels.Thank you Louise xx

  4. Hi Kelly,

    Thank you for taking the time to read my blog post on How I sleep with a stoma. Yes the Maxi bags are a godsend and thats all I use now unless Im going out out then I will use a smaller sized bag. Im glad to hear that you are using the night time drainage system for your ileostomy when its needed. I wouldn’t say damned but it does indeed make life interesting. On that note I had a leak last night and my mattress protector is damned good.
    Im hoping you found some of the tips useful.

    Many thanks
    Louise xx

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