From In Register June 2019. Written by Amy Alexander. Photos by Collin Richie.
Itโs a subject no one wants to talk about. But that doesnโt make it go away. In fact, not talking about a significant disease only makes it less understood and more difficult to navigate. Anne Milneck is trying to change all that.
In the summer of 2016, Milneck got a call from her son, Clay.
Heโd gone to the bathroom, again, and this time, there was blood. A lot of blood. Soon after, Clay was diagnosed with Crohnโs disease. After years of dealing with a host of seemingly unrelated problems, the Milnecks finally had an answer. And yet this was just the beginning.
Crohnโs is an autoimmune illness in which a personโs own immune system, set up to fight off sickness, gets confused and attacks the bodyโs own cells. People often tell those living with Crohnโs that they donโt look sick. Itโs an illness that flares and goes into remission, so it can be difficult to track. Whatโs more, talking about it is awkward. Its symptoms include, among others, diarrhea, rectal bleeding, the urge to use the bathroom, and constipation.
โThis disease often comes along with a good dose of embarrassment and shame, unfortunately,โ Milneck says.
Soon after the Milnecks got their diagnosis, Anne learned as much as she could and started helping other families. Increasing numbers of young people are being diagnosed with Crohnโs, likely because the science has improved.
As a chef, a mom of three, and the owner of the Red Stick Spice Company, Milneck knows food can impact how a person feels. She still believes this. In the case of Crohnโs, though, diet alone doesnโt cause or cure the disease. So Milneck developed a handful of tactics that do make a difference.
She got active with the Louisiana and Mississippi chapter of the Crohnโs & Colitis Foundation and, ultimately, became the organizationโs chair.
โThis disease is best managed when the whole person is managed,โ she says.
The notion of aligning mind, body and science was a highlight of a recent education day the foundation organized.
Learning to speak upโto coaches, teachers and every single one of your doctorsโwhen it comes to Crohnโs plays a big role in coping with it and navigating life when itโs flaring up.
Soon after his diagnosis, Clay headed to college. He worried about what people would think. The Milnecks sought help from LSU Disability Services for extra support. Since stress is known to trigger Crohnโs flare-ups, this small, and relatively easy, measure made a huge difference. Clay plans to graduate next year with a film degree.
Stigma is a big issue. Coaches, teachers and administrators who give kids grief for using the restroom donโt help. Milneck is on a crusade to change that.
โWe need to normalize this business,โ she says. โWe talk about breasts and breast cancer and no one blinks anymore. Men talk about their prostate at the dinner table. We need to be okay talking about bathroom issues.โ