A family copes: How to manage bowel incontinence in our Angel

When you’re living with Angelman syndrome, some topics are just hard to bring up. Incontinence is one of them. But now that we have a plan to tackle this challenge with our 13-year-old Angel, Juliana, I feel more comfortable writing about it.

Gastrointestinal issues are quite common for those with Angelman. Our earlier parenting years were spent navigating an eating maze for a better diet. After all, the right foods going in will mean a better end to what comes out.

Yes, that pun was intended.

As an infant, Juliana struggled with eating, but when she learned to chew her food well, constipation and reflux weren’t far behind. Then, her system seemed to go nuts and expel everything at once. She has some of the biggest bowel movements you could imagine.

But that’s not the end of it. True to an Angel’s state of hyperactivity, Juliana can be busy at night. And if a bowel movement happened to occur during the busyness, Juliana would find a way to discover what was in her pull-up. Yes, this image is a cringeworthy moment.

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Oh no, she didn’t

You can imagine my horror the first time I discovered Juliana had dipped into an area that should have been off-limits. She made a lovely abstract masterpiece on the wall, too.

As I gathered supplies to clean it up, I sat in her room and wept. How was I supposed to deal with this? No one ever said to me, “Hey, watch out for your toddler getting into her soiled pull-up!”

When the tears subsided, I handled the cleanup and started pulling supplies together. Later, I bought an oversized waterproof changing pad and lots of disposable gloves. I knew there’d be a next time. No matter what sleeping gear she wore, Juliana seemed to find a way out. Nothing was fun about that season.

But what did come out of those emotional cleanups is what I fondly call the Potty Protocol. Whenever Juliana had what we call a “blowout,” my husband handled cleanup differently. What took me half an hour might take him much longer.

Juliana’s Potty Protocol hangs next to a butterfly sign in her room to keep an air of lightness to the process. (Photo by Sabrina L. Johnson)

We also had to keep Juliana’s hands occupied so that she wouldn’t make matters worse. Cleaning poo from a carpet is not fun. To avoid messes, I wrote out a step-by-step plan to make the process easier. The plan covers actions from discovery to cleanup and clothes washing.

Today, we’re far removed from that wild season of incontinence. Juliana successfully sleeps in layers to keep her away from her pull-up. However, she still puts out more than her adult-sized disposable underwear can handle. Last Saturday was one of those times.

And of course, the incident occurred first thing in the morning when we were trying to get out of the house. Still, we managed to leave on time. The Potty Protocol always helps.

All in my head

Handling the process is mental, too. In those moments, it’s easy to compare my life with that of the average parent. It’s not easy to deal with the emotional and physical mess of an incontinence disaster.

However, I focus on the task at hand and don’t throw a pity party. Sometimes, I change our plans or do something to give myself a little more respite. And to balance out the ordeal, Juliana gets a nice bubble bath to polish off the cleanup.

Incontinence isn’t party conversation; I certainly don’t talk about it outside the company of special needs parents. Once, I had a conversation with another parent about cleaning up after a big incontinence episode.

We both had a big laugh about how many gloves and cleaners we keep around the house. There was comfort in not feeling alone in this challenge.

Sometimes in life, we simply have to face the yucky stuff. But beyond those realities, I’m glad to have a solid plan so the yucky stuff no longer leaves me in tears.

Note: Angelman Syndrome 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 other 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 Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.