Shhh...

You’re about to read a word that makes many feel very uncomfortable. Even some people who have one whisper about it. Its mere mention conjures up all sorts of negative images and false assumptions. Check to make sure no one’s looking over your shoulder because here it comes...

Ostomy. That’s right, OSTOMY!

Did that make you uncomfortable? Then obviously you’re not one of the several million people worldwide whose lives have been saved or vastly improved by this miracle of modern medicine. And while most people only hear the term “colostomy” there are more types of ostomies that serve a variety of functions. One of those is the urostomy.

What’s a urostomy? A urostomy is a surgical procedure to form a new urinary system. Urostomy surgery is needed when the bladder isn't working the way it should. When the bladder must be removed, a surgeon will create a new passage where urine will leave your body. It is also known as an ileal conduit. Like most ostomies, a pouching system attaches to the abdomen to collect waste that exits the body through a stoma. Also like other ostomies, it allows people to live a more full life, less hindered by what otherwise might be a debilitating, or even fatal, medical condition.

One of those lives improved by a urostomy is that of Jeff Kamm. He was born with bladder exstrophy, a rare disorder that occurs early on while a fetus is developing in the womb. The bladder becomes improperly formed and essentially develops outside of the body, which results in the inability to store urine. Jeff had his first life-saving surgery when he was just 12 hours old. Over the next couple of years, doctors made multiple attempts to place the bladder back in his body. However, it was ultimately decided that an ileal conduit was the best option. Jeff’s had a urostomy since he was two-and-a-half years old.

Jeff had many challenges growing up with a urostomy but said, “I tried to be a normal kid as possible.” He played soccer and neighborhood football, joined the wrestling team, and went on camping trips with his Boy Scout troop. His parents weren’t always thrilled with his endeavors, but he was eager to try new things.

Beyond testing the physical limitations of what he could do, Jeff faced another kind of challenge. He did not want other kids to know he had a urostomy. Scared of their reactions, it wasn’t until high school that he felt comfortable enough to open up about it, and even then, only to a small group of close friends.

It took 16 years before Jeff met someone else with an ostomy. He recalls being the youngest attendee at his first support group meeting, yet he finally found people who understood. Jeff was able to talk about things he had only ever experienced in isolation. With his family's support, this group served as a form of therapy to help him cope with the physical and emotional challenges of living with an ostomy.

Having had his urostomy for over 45 years, Jeff knows very well what it was like before social media. For ostomates all over the world, the benefit of connection has moved from in-person groups to online support. It was in one of these private group forums that he was able to vent a recent frustration, one that almost all ostomates have dealt with: having to instruct healthcare professionals on basic ostomy knowledge and care.

In the last few years, Jeff’s dad underwent colostomy surgery. When he first got it, Jeff was able to walk him through the pouch-changing process and how to take care of his stoma. Due to a recent illness, Jeff’s dad needed to be placed in assisted living care and is no longer able to change his own ostomy bag.

“I have had my urostomy for 45 years, and my dad has had his colostomy for almost a year. My dad is in a rehab facility for meningitis and currently can’t change the pouch on his own. He had three leaks today. The last one was while I was there after work. There are no nurses here that have any experience with ostomy patients. I gave a class to four people tonight on how to remove and apply the pouches.”

If only this type of situation could be called a rare occurrence. What ostomate can’t relate to seeing the blank look on the faces of medical professionals trying to understand this strange stoma-thing they’ve only read about in books? Luckily, ostomates are always willing to educate others on the basics of being unique marvels of strength and survival.

It’s the simple things like Jeff sharing his experience that make online support groups so powerful, where previously, this could’ve turned into yet another issue that furthered isolation. It's no secret that the way people connect has fundamentally changed over the years. Today, that sense of separation can be easily dissipated with just a few keystrokes — a feeling of belonging hard to find anywhere else. For new ostomates, the impact of social media and online support groups cannot be overstated. They’re often the first place they go to learn and get encouragement from an incredibly open and supportive group of people who are always ready to help.

Luckily for the rest of us, it’s people like Jeff whose knowledge and experience formed the foundation of these online communities and local support groups. No ostomate or potential ostomate will ever have to wait 16 years to find a sense of acceptance and inclusion. They don’t even have to wait an afternoon.