About IBD Ep 197 - The Insidious Reasons Why IBD Destroys Sleep

The Insidious Reasons Why IBD Destroys Sleep – About IBD Podcast Episode 197

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Everyone needs sleep, but so many of us struggle to get enough. People living with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) know that a good night’s sleep can feel like a distant dream, whether it’s pain, urgent bathroom trips, or racing thoughts keeping us up. But why does IBD disrupt our sleep even during remission? And what is your sleep telling you about the risks of a flare-up? Learn more in this episode of About IBD Podcast, hosted by Amber Tresca, a longtime IBD patient and medical writer.

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More information on sleep:

Sources:

  • Su XY, Wang YN, Huang YH, Dai C. The sleep quality and its association with disease activity in patients with inflammatory bowel disease: a meta-analysis. Rev Esp Enferm Dig. doi:10.17235/reed.2025.11305/2025.
  • Zhang JZ, Song XZ, Song XN, Shen YL, Tang H, Li H. Prevalence and risk factors of sleep disorders in inflammatory bowel disease: a cross-sectional study. Int J Colorectal Dis. 2024;39(1):140. doi:10.1007/s00384-024-04712-w.
  • Chaemsupaphan T, Pimolsri C, Subdee N, et al. Poor sleep quality is common and independently associated with disease activity and poor quality of life in inflammatory bowel disease: a long-term follow-up study. Therap Adv Gastroenterol. 2025;18:17562848241311142. doi:10.1177/17562848241311142.
  • Kuzoian S, Jerson B, Brimacombe M, Schneeberg L, Hyams JS. Sleep tracking and sleep hygiene counseling improve fatigue in pediatric patients with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2025;81(1):62-68. doi:10.1002/jpn3.70066.
  • Xu TY, Zhang Y, Zhao SL. Association of Poor Sleep Quality With Adverse Outcomes in Patients With Inflammatory Bowel Disease: A Systematic Review and Meta-Analysis. J Dig Dis. 2024;25(11-12):664-673. doi:10.1111/1751-2980.13328.

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Transcript

[Music: IBD Dance Party]

Amber Tresca 00:00:04 I’m Amber and this is about IBD. I was diagnosed with ulcerative colitis as a teen and had surgery ten years later. Now I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen on About IBD. You’ll get real talk on symptoms, treatment, and life with IBD straight from patients, caregivers, and experts. You’ll learn, feel less alone, and even have a laugh along the way. I have a question for you. When was the last time that you got a really good night’s sleep? I am not talking about the times where you sleep for six hours. You wake up four times and now you look and feel like a zombie. And I’m not talking about the fast, scary zombies. Like in 28 Days Later. I’m talking about the slow zombies like in Shaun of the dead. I want you to think about when you got actual restful sleep. Take a minute. Think about it. I’ll wait. If you don’t know the last time you slept well, that’s because living with an inflammatory bowel disease like Crohn’s disease or ulcerative colitis can negatively affect your sleep.

Amber Tresca 00:01:32 For many people with IBD. Bedtime doesn’t feel restful. We might have pain, insomnia, or pain. Somnium. We might wake up to go to the bathroom, sometimes with urgency. We may worry about these problems, or about an ostomy blowout or a pouch leak. And then we’re lying there wondering if we’re in a vicious cycle of worrying symptoms and lack of sleep. Today’s episode is all about why IBD affects sleep, why sleep is so important to managing a digestive condition, and what the research tells us about how we can get better sleep. Some of the things I’m going to cover in this episode include inflammation, nighttime bathroom trips, steroid insomnia, and why your smartwatch or your smart device might know you’re headed for a flare up before you do. Sleep is a major part of wellness, but we treat it like a luxury. We cheat our sleep all the time because we’re busy, or we don’t have enough free time to ourselves, so we stay up late scrolling. But those of us who live with an IBD can’t afford to wait until we have the perfect chance to get restful sleep.

Amber Tresca 00:03:00 We have to prioritize it in the first place, even when it’s inconvenient. There’s been some research into IBD in sleep, and the results are pretty compelling. More than half of people with IBD say their sleep quality is poor, even when they’re in remission. What this tells us is that everything can be going well with the IBD. Otherwise, but our sleep can still be affected. Sleep problems aren’t only because of flare ups, they can happen at any time. However, here’s the really important part. Problems with sleep can begin even before a flare up, so when you aren’t sleeping well, it’s a big clue that a flare up could be starting. Even if you’re not feeling bad, it’s important to remember that sleep could be your early warning sign. Adding insult to injury, inflammation and sleep can affect one another. The IBD can lead to a lack of quality sleep and a lack of sleep can worsen inflammation. And we know that while the symptoms of IBD can negatively affect us in all sorts of ways, it’s the inflammation in our bodies that is the real cause of the problem.

Amber Tresca 00:04:14 Okay, now we’re talking about the connection between IB and sleep. And so we also need to define what it means to have your sleep disturbed. Because there are a number of ways in which it can happen. Some of the problems with sleep that people can have include trouble falling asleep, trouble staying asleep, waking up feeling exhausted or not feeling refreshed. Having brain fog during the day, experiencing mood swings, having trouble concentrating, or feeling like you actually did sleep but it didn’t take away the fatigue. One of the major problems with IBD and sleep is getting up to go to the bathroom in the middle of the night. We tend to normalize it in IBD, but it is far from normal. If you have a J pouch or an ostomy getting up in the middle of the night to go to the bathroom might be part of your new normal, but if you’ve not had surgery, moving your bowels in the middle of the night is a red flag and something to tell your doctor about. But heading to the smallest room in the house in the middle of the night isn’t the only reason for disturbed sleep.

Amber Tresca 00:05:23 Your sleep can be off even if you’re not waking to go to the bathroom. The reason you’re not sleeping well could be from the ultimate source of our problems inflammation. So let’s get to the bottom of why inflammation could be the problem. Let me first say this IBD is not all in your head, but the inflammation that’s going on in your body can affect your brain and your nervous system. We know that certain inflammatory cytokines such as interleukin six, interleukin 17 and interleukin 23 play a role in IBD inflammation. That’s why some IBD drugs block those cytokines and help calm inflammation and help us get into remission. But it’s not like these pro-inflammatory proteins stop at our digestive system. They affect other parts of the body, too, which is why IBD can cause problems outside the gut, such as with our skin, eyes, and joints. You might know these as extra intestinal symptoms or manifestations. Plus, pro-inflammatory cytokines affect sleep. Higher levels of interleukin 17 and interleukin 23 can cause poor sleep quality. Poor sleep quality can increase the levels of pro-inflammatory cytokines, and that’s where we end up in a cycle of I can’t sleep because of the IBD symptoms, and the IBD symptoms are increasing because I can’t sleep.

Amber Tresca 00:07:08 We know some of this because of studies that used wearable devices to track sleep in people with IBD. And it turns out people with IBD are lighter sleepers who get less REM sleep and also wake up more than people who don’t have IBD. In some cases, the sleep problems begin before a flare up starts. This makes sense if you think about it, because those cytokines are starting to increase and stir things up, which disrupts sleep, which leads to more cytokines. And then we’re off to the races. Another reason that people lose sleep when they have IBD is because of the way it affects mental health. And let me say again, people with IBD don’t make themselves sick because they’re stressed out or anxious. I myself was told many times that if I just calmed down that my health would improve. My response was that my brain must be really powerful. If teenage angst could cause literal ulcers in my gut, that made the inside of my colon look like raw hamburger. However, having that inflammation in the body does affect the brain as we already covered.

Amber Tresca 00:08:29 And it’s true that people who live with IBD are more likely to live with anxiety or depression. It makes sense to me, because my experience of being in the bathroom 20 times a day during flare ups and being unable to do much more than lie in bed didn’t exactly set me up to feel happy and fulfilled. Anxiety and depression can also disrupt sleep, the pain of IBD, which can be so bad that it actually inspired Dan O’Bannon to write the chest buster scene in alien cannot help but affect our sleep. There’s also the calculation about going to the bathroom one more time before going to sleep, which can turn into several more times, plus the anticipation of waking up in pain or with a full bag. Our lives are so busy and noisy, so sometimes the only time we’re alone with our thoughts is at night. That’s why the worries creep in and we’re more aware of what’s going on with our bodies. We’re not distracted from the realities of IBD, so our body and brain are on full alert. We also can’t discount the way some medications affect our sleep, such as steroids like prednisone.

Amber Tresca 00:09:46 And despite all the new medications we have to treat IBD, steroids are still commonly used because they’re cheap and they work well. But they have significant downsides, including disrupted sleep, even at lower doses. And sleep is so important to calming down inflammation and feeling better, it starts to feel like a race against time. I was diagnosed with ulcerative colitis in the pre biologic age, which means that I was on high doses of prednisone for long periods of time. It ruined my appearance because I developed moon phase and acne. It gave me stretch marks. It affected my bone health. But I’m not going to lie. Sometimes I wish I had the energy prednisone gave me because my apartment was always really clean. We’ve talked about how IBD negatively affects sleep. I know I’m not the only one who short changes myself on sleep, especially when I’m feeling well. When things are good, I want to do all the things and sleep somehow seems less important. Now I want to give you some evidence on why sleep matters so much, and feel free to remind me of these facts when you see me shortchanging my own sleep.

Amber Tresca 00:11:06 I probably won’t block you. Probably. So here’s what we know. For people with IBD, poor sleep is associated with higher disease activity, increased fatigue, worse quality of life, and a higher risk of flare ups, especially true in Crohn’s disease. So let’s sum it all up. As a society, we don’t prioritize rest and sleep. Poor sleep affects our health in a number of negative ways. Inflammation causes sleep disruptions, the stress of IBD leads to poor sleep, and the medications we use to treat IBD can disrupt sleep. I know this all seems really dire, but here’s the good thing we can do something about it. Let’s talk about what will actually help you get better sleep. You can try some or all of these things. Or you can tell me to get stuffed. The choice is yours, but I want you to have options. So here are some things to consider when you’re trying to get better sleep. If you’re taking steroids, talk to your health care providers about taking all your doses earlier in the day, or at least several hours before bedtime.

Amber Tresca 00:12:30 They may not have thought to tell you this, so you may have to ask. Try to avoid eating bigger or heavier meals within a few hours before going to bed. People with IBD have really complicated relationships with food. I’m not going to cover that here, but think about how your last meal or snack before bedtime might affect your sleep, especially if you have reflux or Gerd. Avoid caffeine later in the day or cut back on it altogether if you can. And I know I violate this one all the time. So if you are watching my socials. Feel free to ignore the urge to tell me to cut back on coffee. Getting some exercise earlier in the day can also help with sleep. No, you don’t need to train for a marathon, but some kind of gentle movement. And yes, I’m going to say it. Yoga does help. You can be mad at me, but there’s lots of good evidence for yoga. You can also try some techniques to quiet your nervous system and your brain.

Amber Tresca 00:13:39 This can include a calming bedtime routine, some breathing exercises, or meditation. Yes, bedtime yoga or stretching might also help. I famously do not find meditation helpful and I stopped trying to force it. So like I said, look for something that’s going to work for you. Okay, so for my estrogen makers, it’s worth considering how hormonal fluctuations or lower estrogen levels may be affecting your sleep. I have just been through getting treatment for perimenopause so I will be honest with you. It wasn’t easy. I had to go through several different physicians to get hormone replacement, but it has helped with my symptoms. Look for a health care provider that specializes in perimenopause or menopause, and here’s a piece of advice that you are really not going to like. And I don’t like it either. But getting away from screens before bedtime and sleeping in a cool, dark room is helpful. And if you see me on the Instagrams at 3 a.m., no you didn’t. And the last thing, don’t forget to tell your health care providers that you’re not sleeping.

Amber Tresca 00:14:57 I can’t promise that they’ll have all the answers, but it is an important part of your IBD journey. It’s a symptom. Just like how many times you’re going to the bathroom every day. There are so many reasons our sleep can be disrupted and your team might have some helpful suggestions. It’s not hopeless, and you don’t have to accept poor sleep as a part of IBD. In fact, don’t accept it. Prioritize your sleep. Talk to your family, talk to your roommates, and also talk to whoever you share your bed with. And that includes your pets. Let them know you are on a journey to improve your sleep quality, that you could use their help, and that it’s going to improve your quality of life and maybe your mood. There is much more advice on getting better sleep from actual sleep experts, so I will link to some resources in the show notes and don’t sleep on my show notes, y’all. They’re pretty good. If you found this helpful and you learned something about sleep and IBD, consider sharing this episode with the people that you’re texting at 3 a.m. because you know they’re also awake.

[Music: IBD Dance Party]

Amber Tresca 00:16:12 They might thank you for it. And then you get to be the hero.

Amber Tresca 00:16:17 Sleep well.

Amber Tresca 00:16:20 Hey! Super listener. Check the show notes to find links and information about the topics discussed in this episode. Plus, get a written transcript and much more on my website About IBD. If you enjoyed this episode, please consider sharing it with someone else or leaving a rating in your podcast app. Reviews and ratings help me grow this show and bring you more great content. Thanks for listening and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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