ileostomy tiredness insomnia sleep problems

Tiredness and Ileostomies

One of the things Im struggling with at the moment is tiredness.  They tell you before and after your operation that you may need to empty your bag several times a day and a couple of times through the night, but at those times you have bigger fish to fry.  Now on the whole I am well, Im used to dealing with my ileostomy bag and life is slowly get back to normal.  Having to wake two to three times a night is really getting to me.  Im so tired.

I wake at least once a night, but usually two or three times a night to empty my bag, this disrupted sleep pattern is touch to deal with.  I never wake in the morning feeling rested and ready for the day.  My husband has been great and he is getting up with the kids and doing the school run, but I feel guilty about that.

ileostomy tiredness insomnia sleep problems

Im trying to resolve this as much as I can by not eating after 6pm and getting early nights.  The problem is that I have so much going on at the minute that my head is buzzing with all the things I need to do that no matter how early I go to bed, I just can’t drop off.  I run photography company The Picture Foundry and as anyone who runs their own business knows, there is ALWAYS work to be done, Im also planning our wedding renewal which is happening in September and as a little sneaky whisper… we are moving house this year too! Shhhhh!!!!  All this along with having three kids, a dog, two cats and two chickens, running my family, caring for my own health and planning my next surgery means my life is a little hectic right now!!

The months of broken sleep are creeping up on me now, I haven’t had a full nights sleep since probably June last year when I started on the steroids… Man, now I have worked that out, it is NO WONDER Im exhausted!!!!  Im actually shocked at that.  To be honest it was probably before June as my flare up was bad before they steroid treatment began.

I can’t do anything about the reason Im waking through the night, I don’t have a large bowel and so my body can’t store waste, I have to wake to empty my bag and this is never going to change.  So after some extensive googling, I have come up with a few things that Im going to try to get a better nights sleep.


I have a terrible habit of bringing the laptop to bed, where I will either surf the internet, watch netflix or get work done.  This is such a bad thing to do, it means I have no winding down time and all that staring at a screen is bad for sleep, the artificial light apparently suppresses melatonin which is the hormone that regulates sleep patterns.

I have also started putting my phone on aeroplane mode and putting it in my bedside table so the buzzing doesnt disturb me and Im not tempted to pick it up!


I read this in a book recently and so we have been covering any little blinky lights in our bedroom as well as covering the alarm clock and making sure the curtains are shut tight and there is as little external light as possible.  I have an eye mask that Timm and the kids got my whilst I was in hospital and so this is going to make a comeback!

owl eye mask


This is a biggie for me as the reason I wake is because my ileostomy bag is filling with waste overnight.  You are apparently meant to limit drinks in the evening too but due to me being susceptible to dehydration I don’t do this.


Regular exercise really helps with sleep, so Im aiming to exercise at least three times a week, whether it is swimming, the gym, a class or just a long dog walk.


Im trying to make my bedroom a bit of a sanctuary, a peaceful and restful place.  This is not easy with three kids.  Im forever finding lego in my bed and Monster High dolls under my pillow.  There is usually a stack of paperwork on my bedside table along with business books and a stack of laundry to be put away in the corner.  My room is usually a bit of a mess as its the last thing on my list of priorities.  I need to make it a priority.

I read something that said ‘Make your bed a place for ONLY sex or sleep’ – this makes a  lot of sense!!!


As soon as I lay in bed, I start thinking of all the things I need to do, and it sometimes feels endless.  I worry about money, work, kids, my health, my family… Basically everything!!

I need to accept that I have a lot on right now and so Im writing lists.  If its on my mind, it goes on a list and hopefully this will help my inability to drop off once Im in bed.

If anyone has any other tips on sleep and tiredness, I would love to hear them!


Sam xx


12 thoughts on “Tiredness and Ileostomies

  1. Hi! I have set my phone to go to Do Not Disturb automatically at 10pm every night and go off again at 7am in the morning. I then excluded my list of ‘favourites’ from that, which are my family’s numbers, in case of emergency. This means to no email, twitter, facebook or text alerts sound on my phone after this time, but I’m not worried that people can’t get me if they need me. Also, in terms of worrying about stuff etc. I am reading The Secret at the moment and that really helps to focus your thoughts into positive ones (did I tell you this the other night when I was drunk?) My brother recommended it to me, at first I was a bit skeptical, but if you open your mind to what it’s saying, I really think it works! Good stuff has started happening since I started reading it! I’m done now. H xxx


    • Thats a good idea Helen, I do worry a bit about family emergencies but then I think if anyone really needed me, they’d call the house phone anyway. Ill look up The Secret, no you didn’t tell me about it, we were too busy being snarky… 😛 xxx


  2. It’s no wonder you’re so tired after so long without a full night’s sleep. Turning off technology and reading a good book before bed helps me switch off. I also find that when I’m worrying about stuff, it’s better to switch the light on and write it down rather than churning it over and and over for hours. I hope your new routine works for you. x


  3. Many people find acupuncture relaxing and some people even sleep during the procedure. If there is an affordable place near you, trying out a late appointment could help you unwind at night. (I’m too tense and awkward to sleep in public, but I definitely am more relaxed afterwards.) It is also supposed to bring down inflammation, which might help you sleep.


  4. Hey Sam , I have Melatonin slow release capsules, which I take when my brain won’t switch off (which can be often) I took them after I had my heart surgery, to help me relax and have a better sleep. As they are a natural medication and not on prescription, my dr said they were fine to take. I also got them on the internet, as they were much cheaper. Can give you the link if you want it. Keith has them to help him sleep during the day when he has to work his 12 hour night shift too.
    Great having you all with us for the couple of days. Hope you get relief soon. Nothing worse than constant tiredness. xx


  5. Pingback: Cure for sleepless nights with an ileostomy | So Bad Ass

  6. I have the same issue as well. Sometimes I am able to sleep through the night. Oftentimes I am waking up touching my adhesive to make sure I do not have a leak or that there is enough air in the bag or as you said to see if I need to change it. It is a blessing and a curse.


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