What Keeps You Up at Night?

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Sleep is vital for health and healing. Hormones released at night are responsible for cell growth and repair. We also need quality sleep for healthy cognitive functioning and so we can complete everyday tasks. A lack of sleep can lead to confusion, delayed healing, immunosuppression, elevated blood pressure, decreased pain tolerance, and many other negative effects.

If you have an ostomy, your quality of life may be impacted by the condition of the skin around your stoma (i.e., your peristomal skin), and issues like pouch ballooning and leakage. One area often not given much attention is how having an ostomy affects your sleep. Based on anecdotal evidence (i.e., clinician experiences and patient stories), we know that living with an ostomy can negatively impact sleep. But to what extent?

Ostomy Sleep Survey

To answer this question, Hollister Incorporated conducted an Ostomy Sleep Survey1. The results revealed some interesting insights on how having a stoma impacts sleep and on how ostomates address their sleep issues.

To conduct this research, we collaborated with product distributors and patient organizations to provide nearly 6,000 people with a detailed 15-question online survey. Participants varied in type of ostomy and length of time living with an ostomy.

The survey included both those with healthy and unhealthy/compromised peristomal skin. Nearly 60% of participants were in the unhealthy category, although most of them (40%) reported only reddened skin and no other symptoms. (n=5,690)

The impact of sleeping with an ostomy

Many people experience interrupted sleep for various reasons, including insomnia, sleep apnea, stress, and environmental factors. However, those with an ostomy have an added layer of potential sleep disruption.

The survey results provided strong evidence of an ostomy’s impact on sleep:

  • Nearly 50% of respondents said their pouching system disrupted their sleep in the past 30 days (n=5,648)
  • 75% experienced pouch-related sleep disruptions at least once a week (n=2,476)
  • 64% of participants — nearly 2 in 3 — cited pouch ballooning as a sleep disrupter (n=2,676)
  • 50% said that sleep disruption was due to pouch leakage or worry that the pouch would fail (n=2,676)
  • Nearly 20% said their sleep was disrupted by itchy skin with no visible sign of irritation (n=2,676)

To read more about the data collected and how to address sleep disruptions, keep reading here.

  1. Hollister Data on File, ref-02989, 2022.

This article was contributed by Hollister Incorporated. Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. For more helpful resources, visit http://www.hollister.com/ostomylearningcenter.

Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. Hollister is a trademark of Hollister Incorporated.

15 replies
  1. David Knollman
    David Knollman says:

    Regarding the Hollister survey, I think one topic was overlooked that affects sleep.
    I set my alarm every 3 hours to empty my
    Bag.
    Thanks.

    Reply
  2. Paul Reich
    Paul Reich says:

    I haven’t heard anyone else with this problem, but I hope someone can relate. My problem is with ‘phantom pain’. I have to take Gabapentin at night in order to sleep thru the night. This works but I wonder about the long term effects of doing this. I have taken a variety of this medicine but have settled on 2 100 mg at 8:00 and then 2 more at 10:00. This seems to work but usually it puts me to sleep for around 7 to 8 hours depending on what I have eaten that evening. I do have a concern as this will make me a ‘heavy’ sleeper and hardly any kind of noise will wake me up. Sometimes I will have these pains during the day but they will go away after a couple of minutes. Anything that is cold will cause these.

    Reply
    • Tracy
      Tracy says:

      Please do some research on gabapentin. I know medication effects everyone differently but this med has some serious long term side effects. I believe they actually have a lawsuit going on so please be careful while on and watch for signs of depression

      Reply
  3. Susan
    Susan says:

    I noticed that there was no mention of sleep position disrupting sleep. I was a stomach sleeper; I’m 66 years old. It’s a hard habit to change, but now because I have an ileostomy I can’t physically sleep on my stomach. I think that it would cause my bag to burst or hurt my stoma. So I try to sleep on my side or my back. For the most part I get a solid 3 to 5 hours of sleep a night, and sometimes I’ll even fall back asleep after emptying my pouch.
    Anyway, just thought I’d share my opinion. I’m pretty sure there are others who deal with my issue as well.

    Reply
    • Dee
      Dee says:

      I was also a stomach sleeper but now have learned to be a side sleeper on my ostomy side cos will have leaks if I sleep on the opposite side. Depending on what time I eat > will wake up once after 5 hrs to empty bag. Just had to get used doing this. Have had my ileostomy for over a year now.

      Reply
  4. Jim
    Jim says:

    As a 72 year old male living with an ileostomy (9 years now) I can say that sleeping comes in short (one and a half to three hours at a time) sessions. This continues all night until all my intestinal tract has completely emptied. I find myself to be tired most of the time and end sleeping most of the day again in short sessions. I find that my life has been severely affected and much quality is gone. I loved the outdoors previously but now find I am not able to spent very much time in it. I know that some of the change in my life’s quality is due to my age and all the joys of the aches and pains. Still a lot of the problem is being tired all the time from the lack of sleep. Yes having a stoma does affect my life but so did having Ulcerative Colitis which developed into cancer.

    Reply
    • Dee
      Dee says:

      U.C gravely disturbed my life. Work eating and general welbeing. Won’t lie having an ileostomy has changed my life but at least can work and go to social gathering s without messing on my self but of course concious of not having a leak. I will take the stoma over the U.C

      Reply
    • Dee
      Dee says:

      I have and still use different bags to help avoid leaks. Sometimes I say I’m just going to sleep or eat this and deal with the leaks later. Yes they drive me mad also and had actually gone into a state of depression after having my surgery. Dont let this define your life. Can chat more if you like.

      Reply
      • Terrie
        Terrie says:

        Recently had surgery having a lot of issues with leaks sleep emotions need to talk to someone whom gone or going through this

        Reply
  5. Jackie
    Jackie says:

    Yes my ostomy affects my sleep. I have heavy output and have to set my alarm to get up several times a night. I am always fatigued.the article did not give any help solutions this is my first post on this site

    Reply
    • Brenda
      Brenda says:

      I use a 2000ml bag and I drink a lot of water at night. When I wake up, the bag is almost full but still have plenty of room for more urine. I have just passed one year of having a urostomy and find that using the Bard bag for night-time works well for me.

      Reply
  6. Tracy
    Tracy says:

    Sleep what’s that 🤷🏾‍♀️🤦🏽‍♀️😂I had my surgery 12/11/2023 . I honestly haven’t had a good night sleep after the surgery. If I sleep on my side all the poop in the bag gets on one side of the bag then leaks I guess cause of the pressure. So, I find myself sleeping on my back which is VERY uncomfortable. It seems like the bag needs more emptying out in the evening vs in the day it’s just annoying and I am so sleepy and solutions?

    Reply
  7. Carley Wilkins
    Carley Wilkins says:

    I have chronic Liquid Diahrea. I take codiene to help control it but, it does not always work so when I should be sleeping I am in the bathroom every 10 minutes empting my bag. I get so frustrated. I had a Gastric by-pass. Then had to have my Galbladder out. It was after the galbladder My bowels got so bad. I have tryed every medicine the Gastrologist could give me. I just got some of the turn liquid to absorb all. I am going to try that. I sure would love a good night’s sleep. I really have to watch what I eat.

    Reply

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