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.Â
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. Â
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.Â
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.Â
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.Â
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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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Jan Miller
This is an excellent article for everyone. Many of us are also inactive when we actually can be more active. This also makes us more aware of the limitations of many
With handicap . Thank you Hawken.
Kitty
Great article. I am a manifesting carrier of Duchenne, my son has duchenne. I've always struggled with bowel pain, even as a kid. Most of my adult life, I've had what I assumed to be IBS, and avoid wheat and legumes because of the pain. Since my gallbladder removal in 2018, it's been all constipation pretty much, after the post cholycectomy syndrome (or however you spell it) . Now I have it so bad it presses on my nerves and makes it uncomfortable to even sit up or do anything. I'm starting to think it's not IBS thats my problem.
This article has motivated me to bring this up with my GP, and have the poop conversation with my neurologist. Its embarrassing to have speak on it, but I must be brave. If you can write an article on it, I can talk to my doctor. My son with duchenne so far his bowels are fine ans regular, but his caregivers (his dad and paternal grandmother ) I will share this article with. I have spoken to her about the growing evidence of a connection to gut health, but this is good info on how to avoid problems later down the line. Thankyou, great article, this helps us both a lot.