As Told To: My life with Hirschsprung disease and bowel incontinence

'Talking about poop is considered very shameful, a private thing,' says Beau Brockett, who is an advocate for people living with incontinence.

As told to Sadaf Ahsan 6 minute read December 14, 2021
incontinence Hirschsprung disease

'My parents are a major reason I am the man I am today,' says Beau Brockett, left, with his parents. (SUPPLIED

Beau Brockett is Michigan-based, and works in communications for the Michigan Environmental Council. He was born with Hirschsprung disease, a rare birth defect that affects the nerve cells that help move food and waste through the large intestine. Those who live with this disease are missing some of those cells, which can prevent stool from moving forward, causing blockages in the intestine that result in constipation, swelling, pain, and infection. While this was a difficult part of his youth, over the last decade, Beau has come to manage the disease, though it has shaped his life in many lasting ways. Today, he shares his story to help others erase the shame around incontinence, and bring awareness to a rare and difficult disease. This is his story.

My incontinence stems from a disorder that I was born with, called Hirschsprung disease. Typically, your colon moves things along through your nerve cells, but part of the nerve cells in my rectum area never came to be. Which means, when I was very young, things would get clogged up, giving me severe constipation. I went through a number of surgeries, one where they took out the diseased portion of my intestine and then put the two healthier ends together, but that caused inflammation, which made me even sicker than before. They then did a colostomy for about a year and took out the inflamed portion of my colon, put it outside of my body, and that made the inflammation go down. 

But by the time all those surgeries were done, I was in the preschool age bracket, and at that late stage, I was learning how to toilet train. Because of that late start and some of the complications from those surgeries, I remained very incontinent for the next nine or 10 years. The rectum is the place that holds your waste before it goes through, and I lost that entirely. So things move through me very quickly. For someone with a healthy colon, your intestine moves in contractions and usually only a few happen in a day. But mine does that several times in an hour. All of that made it a struggle to become continent again.

Today, at 24, my incontinence is very few and far between. If there is a slip up, it’s very mild. My worst days now used to be my best days. When I was younger and in school, there was a greater mental toll, particularly when I was in the classroom and needed to use the bathroom often. It made me feel feeble, unable to manage something so seemingly simple. I have memories of being in my fifth grade class and not wanting to get up or move because it would unlock the smell. I remember grabbing the teacher’s Vicks VapoRub tissues, putting them on my seat and sitting on them to mask the smell. 

Hirschsprung disease and bowel incontinence

‘I have memories of being in my fifth grade class and not wanting to get up or move because it would unlock the smell,’ says Beau Brockett. GETTY

Up until the sixth grade, I was fairly incontinent most days. And then I remember seventh and eighth grade being really great and not having an issue. Part of it was just being able to get comfortable speaking up and raising my hand if I needed to use the bathroom — being proactive. That, and taking care of my body, helped me reach this point where it’s all become manageable, and reading up on some of the literature and learning how to train my body a little bit better. Having a routine has really helped, in terms of exercising in the morning, eating at generally the same time, not snacking a lot and keeping my days to two big meals so things flow through easier. As I grew older, my body adjusted and so did I, mentally.

Everyone has good and bad poop days

It’s also led to me becoming a big advocate for public bathrooms, particularly since the COVID pandemic hit. When so many of them closed, that was tough for me, and it was, too, for those with even more intense symptoms of a gastrointestinal disorder. But also, just talking about my experience is helpful — as is talking about Hirschsprung’s disease, which is so rare; it occurs in about one in 5,000 live births. Because it’s considered a children’s disease, and the issue is usually resolved when you’re young, most of the discussion around it is with the parents of patients. But there are lingering effects, and so advocacy and sharing my story has been a way to provide another perspective. In general, talking about poop is considered a very shameful, private thing. But when you have a disorder associated with it, I think it’s important to not be ashamed and to be open about what you’re living with. Everyone has good and bad poop days, and talking about it can help you get educated, change your routine and make healthy choices. 

So if you’re young, if you’re in school, what I want you to know is that your teachers and your classmates will not care if you have to use the bathroom every so often. If they’re aware of the disease itself, they’re going to be more than willing to accommodate your needs. When I was in middle school, I was given access to the teacher’s bathroom, which really helped, and that’s because I didn’t hide it. I could set up my little station there, with my wipes and spare underwear. For those outside of school, be cognizant of where you’re going and accommodate accordingly. Know what resources are available to you.

Find a poop friend

To everyone experiencing incontinence, I recommend having what I call poop friends, or people  who you can talk all things GI [gastrointestinal] with. My parents are mine. They are a major reason I am the man I am today. They were right there with me through my surgeries, my follow-up tests, and the slow — sometimes smelly — work of taking control of my disorder. I owe them so much. Having folks who can listen to your daily GI issues, both good and bad, is really helpful as a way to vent and to gain a new perspective. Find your very own poop friend.

Many medical conditions are talked about openly, but others — like incontinence — are rarely discussed because we find them embarrassing or shameful. Stigma can stop people from seeking the help they need, and shame can prevent them from making meaningful connections with other people who have had similar experiences. No one should be embarrassed to talk about their health, and we’re proud to help people like Beau tell his story.

Sadaf Ahsan is a Toronto-based culture writer, editor and stereotypical middle child. She can be reached here.