Sleeping with an ostomy

Through all the adaptions to life you will have to make during your recovery from ostomy surgery, learning how to get a good nights sleep is arguably one of the most important and difficult. Your body needs sleep to heal and mentally you need it to process the trauma of surgery. It may be difficult to start with if you are in some discomfort as things settle down. You have to learn to accept your body in its new state, this alone takes great courage and strength which in turn may be affecting your ability to shut off and get a good nights sleep. Post surgery I was eating very light for the last meal of the day in fear of having a leak in the night. As my confidence grew and management of my stoma became easier I found a new normal. Not eating food past 6pm helped reduce the amount of output over night and remove the need to empty during the night. Roll on 18 months and I am less strict and have found a compromise. If I do eat later I know to empty in the middle of the night and being a light sleeper I seem to wake up when needed. Whilst I am dreaming a toilet situation appears and I wake up needing to empty my bag. Does that happen to any of you? Freaky huh?! Reducing (to eventually eliminating) caffeine from my diet was necessary for me. This isn’t to say this is needed for everyone but from following ostomates on social media for some years now I have noticed this is one change many make when high output is a concern causing bag leaks. I can honestly say this made a big difference to the volume and frequency of bag emptying. 

One minute you are afraid to move in the bed as you don’t want to risk your new bag to leak, then the years go by and you are waking up on your front! This takes time and security in establishing a bedtime routine that minimises the risk of leaks. A v shaped pillow was a god send when I first came out of hospital as I could lay with my legs wrapped around it leaning on my front with the pillow cushioning my bag. Waterproof mattress protectors are a great investment long term and for going away when you don’t have your own bed to stay in, puppy training pads are an affordable throw away solution to protect any mattress. It goes without saying that making sure you have a good functioning stoma bag and correct supplies for your skin are key. Absorb capsules by Respond Healthcare are my secret weapon for night time as they solidify the output to prevent leaks which with an ileostomy is very possible. Flange extenders are another extra arm to your bow, giving you that extra time for the output to penetrate the outside skin. Most ostomy supply companies have their own versions of these products, mine are from Pelican Healthcare Ltd which I couldn’t rate highly enough!

Finally finding the right support wear - a very individual choice. It may be support knickers, waist bands or waist belts. Wearing a tighter top is preferred by some but not all. For me loose over sized pyjamas were my nightwear of choice with high waisted underwear. This felt like a good compromise between being comfortable whilst still healing and feeling my ostomy bag was supported during sleep. There is no right or wrong answer to this. Try a few ideas and go with what gives you the most sleep. For young ostomates the Junior Waistbands by Comfizz start in size XS which we have used for my little one since he was 1 years old. Available on prescription in Wales you are entitled to 6 pieces of support wear per year, and if you have children who have grown out of theirs and need the next size up ring your GP and explain. They should be more than happy to order the next size up. Sleep is one of the more difficult transitions I found following ostomy surgery. You sleep a certain way for years to needing to find a new normal. Don’t put too much pressure on yourself and have a good book ready for if you can’t sleep to help you nod off. An app for calming bedtimes such as Calm or a You Tube video of relaxing bedtime music is also a lovely way to relax into your sleep too. 

Until next time, Rach x