Sleep is one of the top things a new ostomate worries about and can struggle to get into a new routine with following surgery.
For sometimes decades, they may be used to sleeping a certain way bag free. To then have to find a new normal with your ostomy bag going nowhere soon is mentally and physically hard. If you have had a rough road with your illness and surgery, bedtime is where you want to try and relax and unwind which can be difficult as you get used to having a bag in the way. It won’t always feel that way, I promise.
You will find a new way of sleeping that allows you to not worry about bag leaks and how and where you rest your head. You may very well lose sleep in the initial stages - this is perfectly normal as you navigate accepting your new body, healing physically and learning to accept what has happened.
During the early days I finished my last meal of the day by 6pm so that by bedtime I could make sure the majority of my output would have left the building! It wasn’t until I found the right bag and was confident in the management of my ostomy that I went crazy, and started eating a bit later and allowed myself to have some treats before bed time.
To start off, stick to an earlier meal time to avoid a large volume of output during the night. As you get further into your recovery you can push this onwards and test the limits. I found that I would naturally wake up when my bag needed emptying as my brain synced up to my new little friend. It is possible but doesn’t happen for all. I set an alarm at first, as for me it was not worth the risk of waking up to a poonami in the night and having to change the sheets while I'm half asleep. Nobody needs that!!
Unfortunately the position you lie in may not lend itself well to sleeping comfortably in the early days. If you are lucky enough to have keyhole surgery then this will pass much quicker than if not. Avoid sleeping on your front as you heal. I used a V shaped pillow to give my tummy a soft support and hold so my body was elevated more allowing my bag to fill without squashing it as I learnt how my output would work during the night.
The behaviour of your output will change from when you have had surgery to further on down the line. You may have had to change your diet slightly or even drastically. You may find a position you can not get comfortable in from the start won’t still be the case forever. Don’t be too disheartened. Struggling to get comfortable won’t last forever.
You will understandably be anxious in those first few weeks of sleep fearing a bag leak but when you find the right bag for you and get your meal times in order things will get better. You may find you sleep even better if your surgery was a result of a lot of pain and suffering. This is experienced by many ostomates.
Reduce gassy foods that will create air in your air making it uncomfortable to lie on. Nothing gives me more anxiety than waking up to a bag full of gas thinking it's only a matter of time before it goes POP! Now, it never has happened but seeing it so full can be alarming so I ensure I keep gassy foods to a minimum in the last meal of the day or any evening snacks.
Keep a food diary in the first few months in case you experience problems with your bag leaking, stomach pains, or blockages as it may be diet induced. Record it in as much detail as possible and share with your stoma nurse. Their knowledge is invaluable and they may spot something straight away that could potentially cause you problems. I always team this with photos of my bare stoma from all angles so I can monitor physical changes.
You can never be too cautious in the early days, especially if it is all new to you. It is a great way to learn more about your new body, how it functions and how to take care of it.
Less of an ostomy tip to avoid and more of a human behaviour one, avoiding looking at your phone straight before bed and during the night if you wake up. I used to be terrible at this.
When life gets too much and I can’t shut the noise in my head I would watch you tube or scroll endlessly to try and distract myself. As much as it works during the time I was guilty of craving instant gratification which is so easily done and certainly a generational problem for the youth of today.
Create a calming nurturing space for bedtime. Light a candle, listen to a bedtime app if you want to have input to help the noise. Read a book, journal, practice meditation or chat to your partner about your day. Avoiding the blue light from a screen helps maintain your levels of melatonin, the hormone that your brain produces in response to darkness. It helps with the timing of your circadian rhythms (24-hour internal clock) and with sleep. Being exposed to light at night can block melatonin production making it harder to get to sleep and get quality sleep.
If you are struggling with sleep and your stoma nurse/medical team can not offer any more practical advice, don't hesitate to book an appointment with your GP. A medicinal or herbal remedy may be recommended. Don’t leave it and struggle. Your body needs sleep to repair and after major bowel surgery and the trauma that comes with that, you owe it to your body to create an environment where the maximum amount of sleep is possible.
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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