IBD patients often complain about being tired. The kicker is that most of the time no matter how tired we are, we can not sleep. Why is that? Is it because of the pain, the medications, the psychological aspect of chronic illness, or is it the disease itself? I have been at a loss for answers myself for a while, so I decided to do a little research of my own. Guess what I found out. It’s a little bit of everything rolled into one.
According to an article published by The Journal of Pediatric Gastroenterology and Nutrition in 2006 all of the 41 patients they studied with IBD had some degree of sleep disturbance. 54% had mild insomnia, 24% had moderate insomnia, and 29% had severe insomnia. All 41 patients complained of day time fatigue. No wonder because if you didn’t sleep well wouldn’t you be tired too?
Insomnia can be caused by a lot of different factors. The steroids we must take to fight inflammation causes it. Along with half or more of the other medications we take having a side effect of altered sleep. The pain we’re in constantly, and it is constant for some, plays a huge role in sleeplessness. I know when I hurt particularly bad, I don’t sleep at all no matter how tired I am or how long I have been awake. What about the stress and worry we feel all the time not knowing what is coming next for us? It is enough to drive us crazy so it’s definitely enough to lose some sleep over.
I know how tired I am all the time. There is rarely a day that I have where if I sit down for more than a few minutes, I’m not asleep. I know several IBD sufferers who complain about the same thing. One of them just had a sleep study done to find out if she is also narcoleptic because she has such a hard time sleeping at night and staying awake during the day. It’s both amazing and horrifying that you can be both absolutely exhausted and completely sleepless at the same time.
Almost all IBD sufferers complain of fatigue. It’s a complex phenomenon that frankly, there aren’t a whole lot of answers for in the medical world. The closest answer I can give you is that it has both primary factors such as the disease itself, and secondary factors, such as medications and nutritional deficits. Garth Swanson who wrote the article Sleep Disturbances and Inflammatory Bowel Disease; a Potential Trigger for Disease Flare? in the “Expert Review of Clinical Immunology”, might have an answer for us. He writes that altered sleep can affect the GI tract itself, but it can also alter the immune system. How crazy is that? Not sleeping can alter your immune system. I always knew it could weaken it and make you more susceptible to common viruses like the cold, but if I had known it could literally alter it, I might have opted out of the late nights a little more often. He then goes on to say the inflammatory process caused by not sleeping can then impact the ability to sleep thus causing a vicious cycle and a positive feedback loop that both maintains and perpetuates inflammation.
One really does have a direct effect on the other. Not sleeping releases a protein that causes inflammation and the inflammation releases a cytokine that causes insomnia and daytime sleepiness. Its almost like you can’t win for losing. As with everything else that goes along with this disease one thing leads to another and that thing makes the first thing worse. That right there is enough to make me want to pull my hair out. I don’t know about you, but I think it’s madness. In the complicated would of immunology and autoimmune diseases we are stuck somewhere in the middle of being noticed and being totally ignored. And all we want is to be able to sleep, eat, and not be in pain. Is that too much to ask for?
Between the medications and the stress, and the unknown, sometimes its nice to have some kind of answer to at least one question. Yes, IBD and Insomnia and Fatigue are all linked and unfortunately feed off each other. I wish I had advice for how to sleep and how to stay awake, but unfortunately both of those things are out of my realm as well. Many people use yoga and meditation to calm their minds before sleep. I personally like essential oils such as lavender and a hot bath. While nothing is going to work perfectly and no one thing works for everyone it could be worth a shot. If any of you have any tips for the rest of us we would love to hear them.
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