How I’ve Managed Constipation as Someone With Duchenne

This is the dirtiest column I have ever written because it’s about poop. And whether you love it or hate it, it’s an especially relevant topic to the Duchenne muscular dystrophy community.

Sitting in a wheelchair for long periods and experiencing overall muscle weakness can cause increased constipation, so it’s important to be vigilant. A mixture of eating healthily, paying attention to my body, and standing when possible have all helped me regularly attend the bathroom. 

Not going for days at a time isn’t a fun experience, to say the least. It can make you feel bloated and, if it gets bad enough, sick to your stomach. And passing that poop is an exercise in determination. It can also back up your intestines, cause health problems down the line, and become painful.  

During the COVID-19 pandemic, I’ve had a chance to look at my diet and find ways to reduce my constipation, which is an issue when I’m not careful with what I eat. I had always used grapes, prunes, All-Bran cereal, broccoli, and Miralax to help manage my regularity, but I’ve recently discovered that kale is an excellent tool as well. 

My mom started making me kale and spinach salads for lunch, and since I can’t cook anything on my own, I was forced to eat them. I admit I wasn’t a salad fan at all, but the results speak for themselves. I go almost every day now, and I feel a lot better. All it takes is three salads a week, and I am golden. We add garbanzo beans, leftover chicken, turkey, red peppers, tomatoes, avocado, and whatever else is in the fridge to make it taste better. Sometimes I dread having to eat kale ever again, but I’ve realized that it is well worth it. 

When things aren’t coming out right, you have to learn to speak up. Your caregiver, parent, or loved one can help you correct course either through medication or diet. Once things get out of hand, it’s hard to get regular again. It’s an awkward conversation, but your poop health directly relates to your overall health. 

Standing allows gravity to do some of the work for you. Most physical activity helps pass your stool because doing an action over and over again can help jiggle certain blockages free. With Duchenne, we can’t really do that, but some of us can still stand and others can use standers that do it for us. Just a couple of minutes a day can be all the difference between abdominal pain and a free-flowing intestine.

Managing your constipation is doable, and it’s not always fun, but I believe it’s worth it in the butt (oops, I mean the end).

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