Information | Voices from Girls with Guts
Most of us have been there. It is 3:00 AM before a big day. You are lying in your bed (or sitting on your toilet) and simply cannot sleep. The night is passing quickly and you know that you need to fall asleep soon if you are going to make it through tomorrow in one piece.
While everyone struggles with sleep from time to time, people with chronic illnesses like IBD or ostomies face additional challenges. Pain from chronic illness or surgery (known as painsomnia) can leave us rolling around in a desperate, seemingly futile attempt to get comfortable. People with ostomies and urostomies often have trouble sleeping on their stomachs or fear that their bag will leak.
Keep reading if your chronic illness, IBD, or ostomy is keeping you up around the clock; Your Girls with Guts sisters have some tips for you!
The IBD, ostomy, and j-pouch community tend to make their fair share of midnight bathroom runs. Since switching on a light in the middle of the night is a sure way to disrupt our relaxed state of mind, it is best to leave the lights off for such trips. Of course, running to the bathroom in the dark is not always the best idea (trust me; I have walked into a few too many walls to count). GWG, Heather, remedies this challenge by putting a nightlight in her hallway and bathroom. This allows her to safely travel from her bed to the bathroom without turning on bright lights.
Many new ostomates struggle with sleeping positions. I vividly remember lying on my back and staring at the hospital ceiling wondering how I would ever sleep this way. I was a lifelong stomach sleeper. Sleeping on my back seemed as unnatural as sleeping while standing.
It takes time to find the sleeping position that works best for you post-op. Many GWG use pillows to help. When Christina first got her ostomy, she put pillows under her legs to restrain herself from rolling on her stomach. Other GWGs use pregnancy pillows to help them safely lay on their stomachs. I used to put a large, hard pillow next to my head so that I could trick myself into thinking I was sleeping on my side.
No matter which method you use, it gets easier with time. You may even find that you can eventually return to your original sleeping position!
Chronic illness comes with a fair amount of discomfort. While we have limited control over our pain, we can use various methods to reduce it. Many GWG sleep with heating pads (make sure you set a timer!). These can be excellent for flare cramps! When my cramps are mild, I personally like to turn to my sloth warmie. It is a microwavable stuffed animal that lets off a lavender aroma. Its adorable face always relaxes me.
One of the most frustrating things about chronic conditions and ostomies is the lack of control we have over our symptoms. We cannot prevent or tame a flare anymore than we can circumvent a complication. However, preventive measures help some warriors. Here are a few tricks that help your GWG sisters control their symptoms.
Food can impact our output or bowel habits. Sometimes, it helps to stop eating certain foods before going to sleep. Emily tries to cut off her eating and drinking early in the evening. If she has had veggies, she takes an Imodium to soften her output.
Everyone is different, so you need to listen to your body and determine whether or not certain foods aggravate your symptoms. For example, I know that having dairy in the late afternoon is a trainwreck waiting to happen, even when I am in remission. A food journal can help you identify how your body reacts to different foods.
There is nothing as frustrating as waking up from a well-earned sound sleep to an accident or ostomy blow-out. You are suddenly forced to get up, take care of business, and clean. So much for a good night’s sleep!
While accidents and blowouts are often unavoidable, preparation can help make the response easier. One GWG J-poucher wears a size 5 pad to bed so that she does not need to worry about changing the sheets if she has an accident or leaks.
A woman with an ostomy sets her alarm clock for 2:30 AM so that she can prevent leaking and blowouts. She reflects that waking up once in the middle of the night to empty her back is far more relaxing than worrying about a leak. Another GWG keeps fresh sheets and cleaning supplies right by her bed. This allows her to easily swap out sheets in the middle of the night.
Sleep is critical for people with chronic illnesses. Yet, ironically, painsomnia is very real. Sleep is not as simple as it seems when you are in the midst of a battle with your body. Nevertheless, there are strategies you can use to help you make the most of the time you spend in your bed.