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Stomas & Sleepwear | Choosing Nightwear With a Stoma

Even before my ileostomy surgery in 2011, clothes were one of the big worries on my “worry list”. What would I be able to wear with a stoma bag? What clothes would I have to cut out altogether? Was I going to be confined to a life of baggy clothes to hide the bag underneath? Would I be able to wear pretty dresses & actually feel confident?

These questions often went round my head until I tried to do some research, whilst getting overwhelmed with everything else to do with having a stoma, pre surgery. There wasn’t a great deal out there about seeing other people of my age living with a stoma and how they adapted to it, let alone what clothes they found worked for them or fashion tips and tricks.

Then it dawned on me, what would I wear to sleep in? I’d been focusing that much on a life outside my bed that my ileostomy would hopefully bring me that I’d forgotten about the place where I spent the majority of my time when my Crohn’s was flaring.

What nightwear did you wear for your operation?

My stoma nurse advised me to wear a nightshirt with buttons down the front for after my operation so that it would be easier and quicker to access my stoma bag for observations, changing and so that I was unrestricted. I obviously got to wear a lovely, sexy hospital gown for my operation itself, but when I woke up covered in blood stains it became apparent that I wasn’t going to feel clean until the day or so after surgery where the nurses and/or my Mum would change me into a nightshirt.

This worked really well post-surgery, especially with a stomach drain attached, a catheter, various intravenous drips and wires everywhere for observations. Because I’d had my rectum and anus removed and my bum sewn up (otherwise known as a “barbie butt”) it worked well with this also because I could have help to change my underwear and pad frequently that was absorbing any blood from the wound.

I’d definitely recommend this! Buttons were a lifesaver as well so I didn’t have to be removing my clothes over my head. There was no way early doors that you would get me raising my arms above my stomach, let alone reaching up above my head. The pain was definitely raw from the 6-inch wound down my stomach.

Do you have any tips for bed time in general to make sleeping with a stoma bag easier?

Everybody finds a routine and tips and tricks that work for them as time goes on post-surgery. A few tips and tricks I have learnt and used in the past or I currently use, to enable me to feel confident and able to rest without worrying about my bag, are as follows:

  • – Sleep on an incontinence sheet underneath or dark towel if you have increased leaks/problems with your bag sticking. Dark towels are easier I find to use over and over after they’ve been washed as stomach acid stains fabric.
  • – Get a waterproof mattress cover for that added peace of mind for when leaks do happen (I’ve thankfully only had less than a handful of leaks in bed since 2011 & they were manageable)
  • – Change your stoma bag about half an hour to an hour before bed. This means the filters will be fresh so ballooning will be less likely (where your bag fills up with air)
  • – Limit what you eat into the evening so that your bowel is less likely to go into overdrive when you sleep
  • – Dark fitted sheets and duvet covers and patterned ones can give you more peace of mind if you are worried about not being able to get rid of smaller bag leak stains completely
  • – Set an alarm for part way through the night if you are worried you won’t wake up in time to empty a full bag. This can be less than ideal but is definitely worth it if you’ll get more sleep knowing you have an alarm to wake you up then trusting your body to wake up early days post-surgery. I find my body now automatically wakes me up when it’s time to empty 9/10 times.

What nightwear do you find works best with a stoma bag?

For me, it’s definitely crop top pyjamas and normal rise or high waisted bottoms/leggings. I’ve never been a t-shirt nightshirt fan as I don’t feel there’s as much room for my bag to expand if I get wind in the night, even under a baggy nightshirt. This is something that mentally doesn’t make me feel relaxed to sleep, but I know it works fine for others. It’s very much a personal preference.

In Winter, I usually wear long sleeved pyjamas. In Summer, I sleep in a crop trop or comfy bralette and my knickers.

In all circumstances, I make sure that my bag is hanging out of my pyjamas so that it has as much room as possible when it fills up during my sleep. I also ensure that the waistband on my bottoms doesn’t interfere with my bag when I sleep by rolling it down a few times, especially if the top of the waistband is going to push up against the bottom of my bag in my sleep and potentially cause the adhesive to become creased and/or loose and then increase the likelihood of bag leaks.

It’s very much a case of trial and error. You will find what works for you.

My experience is not a “one size fits all” but is what I’ve found what works for me. I definitely found the first several months and few years post stoma surgery were a huge learning curve in all areas and what to wear was just one aspect of stoma life I worked my way through and spoke to other people about to find out what works for them and I tried different things until I found something that works for me.

Some people wear support bands for bed, especially if they have a hernia or if they have problems with their bag staying stuck to their skin. I choose not to have my bag covered because this is what works for me, but be reassured that if you’ve tried one thing and it isn’t working, it doesn’t mean there won’t be anything that works. You will find what works for you. Make use of the resources around you such as your stoma nurse, support groups, people who have had stoma surgery (I follow so many useful accounts & inspiring people on Instagram) and don’t be afraid to ask questions.

You can read Amy’s blog here

Follow Amy on Instagram here

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