How To Talk To Your Doctor About Sleep

You Probably Don't Talk Sleep With Your Gastroenterologist -- But You Should

Yawning
Daytime sleepiness it not something you should have to live with. If you are having trouble sleeping, there is help available. Image © riesma pawestri / Freeimages.com

Inflammatory bowel disease (IBD) affects more than the digestive system, and in fact, more than just the body. IBD (Crohn's disease and ulcerative colitis) can also significantly affect a person's quality of life. One aspect that many people may not consider when it comes to IBD is sleep. 

Getting quality sleep is, of course, very important to long-term health. The Centers for Disease Control and Prevention (CDC) actually considers the widespread lack of sleep in adults in the United States to be a public health epidemic.

Sleep insufficiency is linked to chronic disorders such as high blood pressure, diabetes, and depression. People with IBD have their own struggles with sleep. Many with IBD wake in the night to use the toilet, while others may have difficulty falling or staying asleep because of pain or as a side effect of medication. 

The Scope Of The Problem

Interrupted sleep might seem par for the course during a a flare-up, but it can still be an issue when the disease is quiet. Even in remission, about half of all people with IBD still report problems with their sleep. While most people might shrug off sleep insufficiency as just being part of life, it may actually have an effect on the course of IBD. One survey done on 3100 people with IBD showed that poor sleep could actually be associated with a return of IBD symptoms. The bottom line is that people with IBD need to make good sleep a priority, and some may need help from their regular physician or a sleep specialist.

Marisa Lauren Troy, an ulcerative colitis patient, IBD advocate, and blogger at JournalingIBD.org, has first-hand knowledge of the unique challenges people with IBD face when it comes to sleep. Her difficulties with insomnia are well-documented on her blog, and her doctors have called her "a very complicated case." She was referred to a neurologist and then a therapist and next to a psychiatrist.

"[N]o doctor could figure anything out," she says about her sleep disturbances. "Or, it was always attributed to something else."

Talking To Your Doctor

People with IBD need quality sleep, most don't get enough sleep, and sleep can negatively affect symptoms: and this means sleep should be brought up with the gastroenterologist. Tauseef Ali, MD, Director of the IBD Program at The University of Oklahoma and a specialist in the connection between IBD and sleep, recommends that patients and their physicians discuss sleep disturbances at every visit. But how do you start the discussion, and what does your doctor need to know?

Start A Sleep Diary Today. To speed things along, start a sleep diary that will be ready to bring to the next doctor's appointment. A simple journal with pen and paper will work, but there are also many phone apps and devices that can also help in tracking sleep. Items to keep note in the journal include:

  •     Duration of sleep: The length of time spent actually sleeping.
  •     Difficulty falling asleep: How long it takes to go to sleep at night.
  •     Difficulty staying asleep: How often night waking occurs. 
  •     Feeling tired: The severity of daytime sleepiness, and when it occurs.

Go Beyond Just "Fatigue."  IBD is associated with fatigue, which goes hand-in-hand with sleep. Quality sleep won't necessarily fix problems with fatigue, but getting a poor night's sleep is most certainly going to contribute to fatigue. One way to start the conversation is to bring up any current problems with sleep, especially when the IBD is flaring, but also when it is not. The sleep journal will be very helpful in highlighting exactly how sleep is being affected, and how that translates to difficulty in day-to-day activities. 

Honestly Portray Your Symptoms. Take a step back in order to truly asses the affects of a lack of sleep. A poor sleep cycle is more than an annoyance, it can cause serious problems with work or school, as well as pleasurable activities. Many people with IBD may not see sleeplessness as a serious consequence of the disease, especially when put in the context of other potential complications, and yet it can still negatively affect IBD. Being truthful about the extent of sleep problems, including how often they happen and how they affect daytime activities, is extremely important.

What Happens Next?

Depending on the nature of the sleep disturbances, a referral to a sleep specialist might be in order. Dr Ali advises that there are currently "no guidelines" for gastroenterologists when it comes to managing IBD patients who have sleep disorders. Every person with IBD will need a different plan of action, but once a diagnosis is made, Dr Ali notes that patients should expect a referral to a sleep specialist for further evaluation.

Troy says that it took "several appointments with a doctor" before her problems with sleep were understood. In her case, more specialized care was necessary, because typical sleep hygiene routines were not proving to be effective. It took time to find a physician that listened to her and was willing to offer an individualized plan. Troy also points out that she must do her part when it comes to managing her sleep at night. "It's all about training my brain that it's calming time and no need to worry."   

Sources:

Ali T, Orr WC. "Sleep Disturbances and Inflammatory Bowel Disease." Inflamm Bowel Dis. 2014 Jul 13. [Epub ahead of print] Accessed 11 Sept 2014.

Centers for Disease Control and Prevention (CDC). "Insufficient Sleep Is a Public Health Epidemic." CDC.gov 13 Jan 2014. Accessed 11 Sept 2014.

Tauseef Ali, MD, "Sleep Disturbances and Inflammatory Bowel Disease." e-mail message, August 21, 2014.

Continue Reading