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When ostomy care was hard to find, Jeff Kamm reached out to an online community for help

From life-saving operations to life-changing connections.

Shh… you’re about to read a word that makes many people very uncomfortable. It’s sometimes even whispered among those who have one. Its mere mention can conjure up all kinds 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 many millions of people whose lives have been saved or vastly improved by this miracle of modern medicine. And while most of the public only hears about "colostomy bags" in mass media, there are actually more types that serve various functions. One of those is the urostomy.

What is a urostomy? A urostomy, also known as an ileal conduit, is a surgical procedure for the urinary system. This surgery is needed when the bladder is damaged, defective, or diseased. You can live without your bladder (it's amazing, right?!) but a new passage is needed through a stoma for urine to leave your body. Urostomates wear a pouching system over the stoma to collect waste. 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. There are different severities of exstrophy, but essentially what happens is the bladder forms outside of the baby's body and it cannot store urine. Jeff had 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 which he's had since two-and-a-half years old.

Ziplining at Los Veranos Canopy Tour in Mexico.

Ziplining at Los Veranos Canopy Tour in Mexico.

Jeff had many challenges growing up but said, “I tried to be as normal a kid as possible.” He played neighborhood football, soccer, wrestling, and also 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 — keeping his bag a secret. 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, and even then, only to a small group of close friends.

It took sixteen years before Jeff met someone else with an ostomy. He recalls being the youngest person at the first support group meeting he attended as a teenager. It was there he finally found people who understood and was able to talk about things he had only ever experienced in isolation. Along with the support of his wife and family, these support groups enabled him to cope with both the physical and emotional hurdles of living with an ostomy.

Jeff and Cindy Kamm

Jeff and Cindy Kamm

Having had his urostomy for over 40 years, Jeff knows very well what it was like before social media. He's thankful ostomates all over the world have a place to turn for advice, especially online support groups. "I know that whenever anyone needs help, they will be there," he said. "I think this is why I feel close to so many ostomates in our online group, and I haven’t even met these people in real life. They have been my virtual friends for years now." It was in one of these private forums that Jeff was able to vent a recent frustration, one that almost all ostomates have dealt with: having to instruct healthcare workers about ostomy care.

“I've had my urostomy for 45 years and my dad has had a colostomy for almost a year. My dad is in a rehab facility for meningitis and currently can’t change his pouch on his own. He had three leaks today. The last one was while I was there visiting him. There are no nurses at this facility who have any experience with ostomy patients. So, I gave a class to four people tonight on how to change and apply the pouching system.”

If only this type of situation could be called a rare occurrence. What ostomate can’t relate to seeing a blank expression on the face of medical professionals as they try to comprehend this strange thing they’ve only ever read about in books. Luckily most people, like Jeff, are more than willing to educate others on the basics. It’s answering the day-to-day things about living with an ostomy that makes online support groups so powerful.

The way ostomates connect with each other has fundamentally changed over the years. Today, that sense of separation Jeff once felt can be easily dissipated with just a few keystrokes. Especially for people new to ostomy life, the positive impact of online communities cannot be overstated. As for bladder exstrophy, hearing about it might be as rare as the condition itself, but it's no secret that surgery saved Jeff's life. Because of a urostomy, he can drive a semi for a living, take a vacation with his wife to Rocky Mountain National Park, and enjoy time with his grandkids and pets. We should take Jeff's advice to heart: "No matter how long or awful your journey is, one day it will lift."