Most people may not immediately make a connection between inflammatory bowel disease (IBD) and sleep, but the two are intertwined. IBD affects the entire body and that includes the ability to achieve restful sleep. Living with Crohn’s disease or ulcerative colitis can significantly affect the quality and quantity of a person’s sleep, even when the disease is well-controlled. 

Quality, restorative sleep is important to long-term health. However, most people don’t get enough. In fact, the Centers for Disease Control and Prevention (CDC) consider the low quality and lack of restorative sleep among adults in the United States to be a public health epidemic. This makes sense when you think about it, because fatigue affects every aspect of a person’s life. A lack of sleep is associated with many common chronic conditions, including diabetes, high blood pressure, and depression.

With IBD, there are several reasons for the lack of sleep and the low quality of sleep. One obvious reason is the need to get up to use the toilet during the night. This could be because of a flare-up, or in the case of those who have had surgery, including ostomy surgery and j-pouch surgery, due to a need to empty the appliance or pouch. Other common reasons for interrupted sleep include untreated pain and the side effect of various medications used either to treat IBD or for complications or extra-intestinal manifestations. Of course, hospitalizations will also wreak havoc on sleep: patients often do not sleep well while in the hospital.

Sleep Interruption During Remission

While a flare-up is commonly associated with sleep difficulties, even IBD in remission can continue to disrupt rest. About half of people who live with IBD and are in remission also report sleep problems. Fatigue is not only an issue that affects the ability to think clearly and have a productive life in the daytime, it has an actual affect on the IBD as well. It is certainly not a case of “oh, everyone is tired” in the setting of IBD because it is important to keep IBD from progressing and leading to complications. 

In fact, this aspect of IBD has been studied and one large survey of 3100 patients showed that poor sleep could precipitate symptoms of IBD. Obviously this is something people with IBD will want to avoid if at all possible, which means that it is vital to make sleep a priority. However, like many aspects of coping with IBD, it is almost impossible to achieve these goals alone, which is why it is important to engage healthcare providers and enlist their help in understanding and correcting problems with sleep.

How to Talk to Your Doctor

The problem: people with IBD don’t get enough restorative sleep and this poor quality of sleep can adversely affect symptoms. For that reason, it makes sense that problems with sleep should be brought up with a gastroenterologist. However, that’s easier said than done when there are often more seemingly pressing problems to address (such as abdominal pain, bleeding, or weight loss). 

I asked Tauseef Ali, MD, Director of the IBD Program at The University of Oklahoma and a specialist in the connection between IBD and sleep about how patients and providers can connect regarding this issue. He recommends that patients and physicians discuss sleep at every office visit. However, how should patients approach the topic and what is it that providers need to know?

A Sleep Diary

One thing that will help in addressing sleep is a sleep diary. One important part of this, however, is having enough information in the sleep diary to understand some of the issues. For that reason, starting a sleep diary as soon as possible (today, even), is an important part of the process. Keeping notes in a day planner is easy enough to do but there are also a variety of apps and devices, such as smart watches, that can help with sleep tracking. The key aspect is to be consistent so that enough data is available to analyze.

Some of the aspects of sleep that are important to record include:

• Duration: The length of time one spends asleep.
• Falling asleep: How long it takes to fall asleep at night.
• Staying asleep: How often one wakes up during the night and for how long.
• Fatigue: How sleepy one feels during the day and its impact on regular activities.

Bringing It Up

IBD also causes fatigue, which may be independent of not only sleep but also disease activity. For that reason, addressing issues that are causing a low quality of sleep may not provide a complete fix. However, ignoring the effects that IBD has on sleep will not help at all when it comes to reducing daytime sleepiness and associated effects such as brain fog. When there are many issues happening with the IBD it may be challenging to bring up problems with sleep, which is one of many reasons why it is also important to go to appointments when the IBD is in remission (or quieter) as well. Those appointments in between the more urgent visits are a good time to go over a sleep journal, discuss why sleep is being disrupted, and talk about how that is affecting daily life.

Resist the Urge to Minimize Symptoms

How is the lack of sleep or the interrupted sleep truly affecting your life? We tend to gloss over it because it may seem trivial in the grand scheme of things and compared with the other serious complications that can occur with IBD. However, there can be serious consequences from daytime sleepiness and a lack of sleep may actually contribute to an IBD flare-up. Being honest about how sleep is affected by IBD or medications or other factors like depression or anxiety and how this is all affecting daytime activities is important.

Next Steps

Some problems with sleep might be challenging enough that they warrant a referral to a sleep specialist. According to Dr Ali, there are currently “no guidelines” to follow when it comes to helping patients who live with IBD and also have sleep disorders. If a sleep disorder is suspected, a sleep specialist should be consulted in order to make a diagnosis and proceed with treatment.

Sources:

• Ali T. “Sleep Disturbances and Inflammatory Bowel Disease.” Personal e-mail correspondence.
• Ali T, Orr WC. Sleep disturbances and inflammatory bowel disease. Inflamm Bowel Dis. 2014;20:1986-1995. doi:10.1097/MIB.0000000000000108.
• Canakis A, Qazi T. Sleep and fatigue in IBD: an unrecognized but important extra-intestinal manifestation. Curr Gastroenterol Rep. 2020;22:8. doi:10.1007/s11894-020-0746-x
• Centers for Disease Control and Prevention (CDC).  “Insufficient sleep is a public health epidemic.” CDC.gov. 13 Jan 2014.
• Hashash JG, Ramos-Rivers C, Youk A, et al. Quality of sleep and coexistent psychopathology have significant impact on fatigue burden in patients with inflammatory bowel disease. J Clin Gastroenterol. 2018;52:423-430. doi:10.1097/MCG.0000000000000729.