UC and the Sleep Struggle
Last updated: December 2022
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.
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.
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!
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