Petrified of lying on her stoma, struggling with leaks, getting up and down to unnecessarily empty her bag, anxious, wired and tired – this is how ostomate, inflammatory bowel disease and ostomy advocate and healthcare patient consultant Sahara Fleetwood-Beresford felt back in 2007, when she’d just had stoma surgery. But now, she gets up less often, experiences fewer leaks, deals with less pain, feels calmer and sleeps more soundly.
Around World Sleep Day in March, this article aims to provide hope and show you that, just like Sahara, you too can sleep well with a stoma.
Rest and recover
Sleep is important, not only for our general health and wellbeing, as well as for increasing energy levels, but also for restoring and repairing, which is particularly important following stoma surgery.
According to an article about postoperative recovery in patients following surgery, ‘poor quantity and quality of sleep can be harmful to postsurgical recovery.’ More specifically, research into patients who had a total knee replacement shows good quality sleep was linked to both better acute pain relief and better functioning 3 months after surgery.
Dealing with leaks
‘What if my pouch leaks during the night?’ This was a major concern for Sahara, just as it is for many ostomates following surgery. It’s important to note that your stoma may be more active initially after surgery, which can result in leaks, but this should settle down.
Sahara says: ‘I can’t pretend that [all ostomates are] leak-free these days; they can happen on occasion, but frequent leaks are not normal.’ Thankfully, there are things you can do to prevent leaks, she adds.
‘Frequent leaks are not normal’
Identify the cause
The first step is to identify the cause of the leak; once you’ve identified the cause, you can find solutions to help resolve the leaks.
‘If you don’t know what the cause is, you will struggle to fix it, because you don’t know what you’re tackling,’ explains Sahara.
Sahara has had two temporary stomas previously, and her current ileostomy sits on an old stoma site, where there is a dip. She began experiencing leaks and identified this dip to be the cause. The solution was finding a convex bag that suited her and fit securely to prevent leaks.
Sleep hygiene tips
Whether you’re anxious about sleeping following surgery or your recovery is causing sleep disturbances, here are some ways you can create a sleep-inducing nighttime routine:
Consume foods that promote calm and sleep in the hours before bed
The Sleep Charity recommends: ‘The best snack is one that contains complex carbohydrates and protein to optimise tryptophan levels. Tryptophan is the amino acid that the body uses to make [the sleep hormone] melatonin.’ Bananas are particularly great before bed, and other foods that can help include almonds, most fish, chickpeas, low-sugar wholegrain cereals or a warm glass of milk.
However, avoid eating too much too close to bedtime, not only for output reasons. The Sleep Foundation claims heavy meals before bed can lead to indigestion and acid reflux, which can disrupt your sleep. ‘However, going to bed hungry can also upset your stomach and make it hard to fall asleep.’ Calming your stomach with a light snack, such as those mentioned, can help with this.
Do gentle stretches or yoga poses
Sahara does this and confirms it helps her to unwind. Find seven yoga poses to help you fall asleep here.
Try breathwork either before bed or when lying in bed. Taking slow deep breaths engages your body’s relaxation response. Sahara also does this to help her drift off. The sleep foundation has some breathing exercises to help ease stress and create a sense of calm here.
Avoid using and looking at electronics
‘Electronic devices, including computers, televisions, smartphones and tablets all emit strong blue light. When you use these devices, that blue light floods your brain, tricking it into thinking it’s daytime. As a result, your brain surpasses melatonin production and works to stay awake’, explains the Sleep Foundation. If you do need to look at your phone, make sure your red-light filter is turned on.
Listen to sleep stories and meditations
There are a range of apps on the market that feature these, such as Slumber and Calm. Just ensure that your red-light filter is on if you need to look at your phone.
Dieting has also been a cause of leaks. Following weight gain, Sahara decided to alter her diet, with the aim of losing weight, which had resulted in her stoma output turning to liquid. The liquid would seep out and under her baseplate, resulting in her having to get up during the night to change her bag. This time, her solution was using gelling sachets, which are designed to be placed directly in the stoma pouch to turn any liquid into gel.
‘They were a godsend,’ says Sahara, ‘if [your leaks are] due to liquid output, then [output thickeners such as] gelling sachets or changing your eating routine are good ways to deal with them.’
‘They were a godsend’
Preparation is key
Learning what works for your body and altering your routine around this can also help to prevent leaks. Plus, being prepared for any potential nighttime leaks will help to reduce anxiety. Sahara recommends planning mealtimes around your sleep times to reduce output at night. For instance, you could try having your dinner earlier in the evening or your main meal at lunchtime and a smaller evening meal, according to Colostomy UK. This is because eating a large meal before bed is likely to increase your output overnight and cause sleep disruption.
The charity also advises emptying or changing your bag before bed. This can help to avoid your bag from overfilling, reduce anxiety about leaks and improve the quality of your sleep. Checking your bag is secure is also crucial, according to Colostomy UK, who advise making sure your skin is completely dry and avoid using creams on your skin that could interfere with adhesion when putting your bag on. Also, ensure the hole is the right size for and fits well around your stoma, because a hole that is too large can cause leaks, affect adhesion and harm your skin, the charity adds.
‘If you have dips and creases that are causing leaks, there are products that you can use to level out uneven skin surfaces and ensure a good seal. Flange extenders may also help.’
A nighttime drainage bag, which is essentially a bag with increased capacity, might be a solution to leaks that works for you. Colostomy UK says: ‘If you have a high output stoma, then a high output bag will reduce the number of times you need to get up in the night to empty your bag.’
However, if a leak should occur, sleeping on a mattress protector or incontinence pad can ease stress, explains Sahara. ‘It can be a game-changer,’ she adds, ‘because you only have to clean yourself and not the entire bed as well.
‘There are so many options now that there should always be something that works for you.’
Yoga can help relax and prepare the body for sleep
Getting comfy
‘Will I be able to sleep on my stoma?’ ‘Will I squash it?’ ‘Will doing that hurt?’ These are also common questions that can concern ostomates post-surgery.
According to Sahara, the answer is that: ‘Most ostomates should be able to lie on their stomach. The stoma itself doesn’t have any nerve endings, so there shouldn’t ever be any pain from it. When you’ve first had surgery and it’s very fresh, it probably will be quite sore, but once it’s healed you shouldn’t feel any pain.’
However, lying on your stomach can increase the chance of leaks, she adds. ‘If you usually eat and drink on a schedule and know what time your stoma is normally active, you can use that to identify a period you can lie on your stomach.’
To reduce the chance of leaks in this position, Colostomy UK also suggests bending the leg on the side with your stoma, as this creates space beneath your abdomen, which allows the bag to fill.
Although, the charity claims: ‘The best position to sleep in when you have a stoma is on your back or your side.
‘Sleeping on either side of your body is fine. On the side with your stoma, your mattress will support the bag as it fills. If you sleep on the other side, you can lay next to a pillow to support the weight of your bag.’3
Sahara also recommends using a pillow to prop yourself up if you’re trying to prevent rolling onto your stomach. She uses a V-shaped pillow herself, but maternity pillows can work too.
Be sure to speak to your stoma care nurse or a healthcare professional before trialing any new products or medications and making any changes to your lifestyle. Wishing you all a peaceful night’s sleep.
Sources
Sipilä RM, Kalso EA. Sleep well and recover faster with less pain: a narrative review on sleep in the perioperative period. J Clin Med. 2021; 10(9):2000.
Cremeans-Smith J K et al. Sleep disruptions mediate the relationship between early postoperative pain and later functioning following total knee replacement surgery. J Behav Med. 2006; 29:215–222.
Colostomy UK. Getting a good night’s sleep. 2022. (accessed 27 January 2022)
The Sleep Charity. Foods that help you sleep. 2020.(accessed 27 January 2022)
Grant C L et al. The impact of meal timing on performance, sleepiness, gastric upset, and hunger during simulated night shift. Ind Health. 2017; 55(5):423–436.
Pacheco D. Bedtime routines for adults. 2021. (accessed 27 January 2022)
Lockley S W et al. High sensitivity of the human circadian melatonin rhythm to resetting by short wavelength light. J Clin Endocrinol Metab. 2003; 88(9):4502–4505.
Burgess H J, Molina T A. Home lighting before usual bedtime impacts circadian timing: a field study. Photochem Photobiol. 2014; 90(3):723–726.
Gemma Harris is a freelance journalist and health writer who blogs at thegutchoice.com