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Adult male tossing and turning throughout the night inside the iris of a bloodshot eye while the pupil doubles as the hands of a clock slowly ticking

UC and the Sleep Struggle

Sahara Fleetwood-Beresford's avatar image

By Sahara Fleetwood-Beresford

4 min read

I recently wrote a post about sleep hygiene and IBD. In that post, I talked about what sleep hygiene means, what it actually involves, and why it's particularly important for people with Crohn's and colitis.

Sleeping with an ostomy bag

I've been on a mission to achieve this seemingly ever-elusive sleep for years. Shortly after my ulcerative colitis diagnosis in 2007, I had to have emergency surgery to form an ileostomy. That impacted my sleep a lot because leaks were a common occurrence. I was afraid to have any output in my bag, so I was constantly up and down during the night.

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Then came the j-pouch. Constant bouts of pouchitis and cuffitis meant sleep remained elusive. I was in pain a lot, which would often keep me awake just as much as the frequent toilet trips.

When the decision was made to remove my j-pouch in favour of permanent ileostomy, I had high hopes that sleep would finally be within my grasp! Bags and supporting items had come a long way since my initial surgery, so I was confident I'd be able to lead a leak-free life.

Chronic pain when trying to sleep

I'd had 6 bowel surgeries already, so I was under no illusion that my pain was going to instantly go away after my j-pouch excision. I knew I had a long road of recovery ahead of me, but I could finally see the light at the end of the tunnel.

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The abdominal pain decreased, but pain everywhere else increased. My hips were so painful, but I blamed that on being laid down all of the time (trying not to put pressure on my butt wound for too long). My knees and my ankles hurt, too. I still couldn't sleep because of pain!

I figured it must be the mattress, so we got a new one, and another, and then another. Not the mattress then. Still, I was laying awake most of the night, feeling lucky if I totaled 3 hours sleep.

So much pain at night

I needed to get a handle on the pain. Pain medications, topical treatments, and exercise were all being trial and errored. I was finally diagnosed with fibromyalgia two years after the surgery, by which point I was already heading in the right direction.

It did give me access to different treatment options and support from physio and occupational therapies. But, I was struggling with pain and sleep, generally getting between 3 and 5 hours. I felt like I was stuck in a  cycle.

I knew that better sleep could actually lead to reduced pain levels, but my current pain levels were preventing me from getting decent sleep.

Sleep hygiene habits

I kept at it. I was very slowly increasing my exercise and trying all of the different sleep hygiene tips that I mentioned in the previous blog. I understand that we're all different, and there’s no concrete list of things we MUST do to improve our sleep. I needed to find what worked for me.

I'm pleased to report that a year on, I average between 6.5 and 7.5 hours a night. Not amazing, but a lot better, which gives me hope that I can continue to improve!

My quality of sleep is poor because I don’t stay asleep long enough to experience the different types of sleep we need to function at "full capacity," but it has improved a little. I tend to wake up every hour and need to change position.

I've found that I need a lot of sleep to function properly, ideally 8-9 hours. I'm currently in bed, head on the pillow for 10.5 hours, and don't feel like I can really increase that.

Working toward better sleep with ulcerative colitis

I try to stick to a sleep schedule. I used to find it difficult, especially at weekends and on holiday. At this point, I generally wake up at the same time, even without an alarm. If I don’t, the dogs like to tell me I'm 5 minutes late.

I try to get outside into the daylight every day, at the optimum time (morning). I take the dogs for a walk around the block, and this usually wakes me up properly.

Other things I do to improve my sleep with ulcerative colitis:

  • I exercise every day: my morning walk, yoga, and I also swim twice a week.
  • I limit caffeine to just two cups a day and have the second 8 hours before bedtime.
  • If I need to snack before bed, I keep it light.
  • I like to use lavender and chamomile moisturizer as part of my relaxation routine.
  • I do gentle stretches before bed. What type depends on what's causing the most pain. My daily yoga practice has taught me which stretches help which areas. I try to focus on my breath to get my brain ready for full relaxation.
  • I occasionally use guided meditation and aromatherapy, if I'm feeling extra stressed.
  • I sleep with earplugs in, to block any unwanted sound.
  • I avoid alcohol.
  • I'm currently trialing blue-light-blocking glasses for 2 hours before bed.

So there we have it. I don't do 100% of the things mentioned in the previous article, but I'm doing what helps me. I'm still exploring – eternally hopeful that I'll crack it eventually!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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