I was pretty upset when I first read about Matthew Perry's ostomy comments. Here is someone just spewing misinformation about ostomies and telling only the bad side of things. But then I took some time to sit with my thoughts over the past week. I re-read many of the articles written about his memoirs and I have come to a different realization. I am not upset at what he wrote. I feel 'understanding and disappointed'. I understand how his experience could be so terrible. I am also disappointed he used his platform to spew stereotypes and play into stigma; instead of advocating for better care.

You Have a Friend
Spotlight: Ellyn Mantell

The road can be long or short when it comes to accepting life anew with an ostomy. You and practically every other ostomate you talk to will admit to dark days getting adjusted as well as the coups of finally mastering the maintenance and lifestyle of your new normal. It’s not having the fear or the anger that’s unusual or unacceptable. In fact, it’s normal. But not accepting your new life, not seeing the good, not somedays finding the humor... that’s what will hold you back and prevent you from finding the quality of life that’s yours for the making.

Enjoy these profiles of 3 ostomates who have not only come to terms with their ostomy but are also living life to the fullest.

Ostomy: A Blip on the Radar for This 30-Year Ostomate Veteran
Spotlight: Stanley Cooper

The road can be long or short when it comes to accepting life anew with an ostomy. You and practically every other ostomate you talk to will admit to dark days getting adjusted as well as the coups of finally mastering the maintenance and lifestyle of your new normal. It’s not having the fear or the anger that’s unusual or unacceptable. In fact, it’s normal. But not accepting your new life, not seeing the good, not somedays finding the humor... that’s what will hold you back and prevent you from finding the quality of life that’s yours for the making.

Enjoy these profiles of 3 ostomates who have not only come to terms with their ostomy but are also living life to the fullest.

Being a Lifeline and Shining Light on Ostomy
Spotlight: Lois Moskowitz

The road can be long or short when it comes to accepting life anew with an ostomy. You and practically every other ostomate you talk to will admit to dark days getting adjusted as well as the coups of finally mastering the maintenance and lifestyle of your new normal. It’s not having the fear or the anger that’s unusual or unacceptable. In fact, it’s normal. But not accepting your new life, not seeing the good, not somedays finding the humor... that’s what will hold you back and prevent you from finding the quality of life that’s yours for the making.

Enjoy these profiles of 3 ostomates who have not only come to terms with their ostomy but are also living life to the fullest.

The Invisible But Strong Voices Behind the Scenes

It always seems like ostomy is a well-kept secret or so Paul Rea thought, especially early on after his ileostomy surgery. But he learned that behind the scenes there are people—knowledgeable groups of people working on behalf of ostomates nationwide ... huge groups of people who’ve got your back.

Looking Back on His 30 Days in the Hospital

For Paul Rea, it’s been 2 years since his ileostomy. There was the magnitude of the surgery itself and all the other irritations of being in the hospital. Looking back, he recalls his top 5. He’s sharing them here to see how his list measures up to yours…and also to help you know what to expect if you face a trip to the hospital.

Sometimes you find parallels in the most unusual places. That’s what Paul Rea discovered when he watched Schitt’s Creek.

Food For Thought on Your Early Post-Surgery Transition: How Your Caregiver Can Help

Paul Rea is always grateful about the support and help from his wife Michelle as well as from his family. Caregivers, whether partners and spouses, family, or professional aides, who have a sense of what will best help you through your early days at home can ease you back to life at home. Here are some things Paul found helpful. Use these to help create your list or brainstorm those things that will matter to you.

Following years of stomach issues, many hospitalizations, and several surgeries, Paul Rea’s passing, but worst, nightmare came true. He needed an ileostomy. With literally little time left to argue with his physicians, his one overriding worry as he was wheeled into the operating room, was that this unwanted monstrous bag would drastically change his life for the worst. Two years since that landmark day, he has learned some other important lessons that have made him think differently.

Breaking with typical format of my Ostoh blogs, to honor my grandmother, Concetta, who died in June. Her incredible spirit, tenacity, and determination inspire and motivate me.
Paul Rea

Gain Knowledge. Think Positive. And Break Away from Stereotypes

Like most ostomates, Paul Rea is sometimes faced with the stereotypical perceptions of what other people think life must be like for him. For the most part, it doesn’t bother him. Still, he’d generally be happier if people gain the knowledge to break away from these stereotypes. By reading and seeing the social media posts of ostomates who are both vocal and visual about their stomas and their ostomies, he himself feels empowered. Through his writing and his Ostoh invention, he wants to pass along this empowerment to others.

To Help Others, Paul Shares His Experiences

Paul Rea had the same questions so many ostomates ask about eating when they’re first out of ostomy surgery. In addition to working out a regimen recommended by the hospital nutritionist and cleared by his gastro physician, he became very rigorous about his diet – rigorous in terms of food choices and the habits with which he introduced and ate food. He also kept detailed records of everything he ate and how he felt after eating. Two years in, he has a strong sense of what works, even considering the fact that everyone is a bit different. Just as with his development of Ostoh, a device that helps alleviate the bothersome gas that can occur with an ostomy, he wants to share his observations with you so that you can adjust to your new life more easily. He even has a free gift that can help you settle into life as an ostomate.

Takes Trial & Error and Some Sound Advice to Get You Where You Need to Be

Paul Rea, like all ostomates, is set on staying hydrated. That’s important when you’re an ostomate, especially if you’re an ostomate who’s had an ileostomy. Sure, Paul will tell you there’s no free lunch after ostomy surgery and hydration is one more thing to think about. He’ll also be the first to tell you that compliance trumps resistance, because dehydration is no small or laughing matter. Your doctor has certainly emphasized that. Yes, Paul has had some near misses with staying hydrated. But trial and error with timing when drinking water or other liquids, tracking his intake, and monitoring exactly what was going on in his body, especially when in-taking liquids, helped. Today, just short of 2 years in since surgery, he feels pretty confident that he knows how to manage hydration, so that his body stays in stasis – and when it starts to go a little off, he knows what to do. Knowing how vulnerable ostomates can be to dehydration, in today’s blog he sets out to share the habits and lookouts that keep him on track. He even has a special gift to give you.

Learning How to Deal with the Bumps in the Road Is

Like most ostomates, Paul Rea went into his ostomy surgery a lot scared, desperate to be relieved from pain, and motivated by the promise of a better, healthier life. Like most ostomates, he experienced the early all thumbs experience with the logistics of taking care of his new “appendage.” Like most ostomates he got used to the additional things he had to do to maintain his daily hygiene. And again, like most ostomates, he wasn’t fully prepared for all the unexpected stuff that started to come up. He soon came to realize that the hard part isn’t wearing the bag but taking care of all that unexpected stuff that crops up in between. Still, he’ll be the first to tell you that staying positive is always the ultimate solution. So is realizing that living a “normal” life inevitably means that there will be bumps in the road.

A Little Prep for A Day At the Pool

Paul Rea grew up in the water. That is, he spent a lot of his summers swimming in his parents’ pool. In fact, he decided as early as 2 months after his surgery that he wasn’t going to let potential awkward situations when his ostomy hit the water keep him out of the pool. So, he dove right in and, to this day, continues to swim in hot weather. He’ll be the first to admit that some of the awkward things that you imagine could happen when you step into the water could actually crop up. But every one of them has a simple solution to head any of these awkward situations You may have to be a little thoughtful about your prep just like with many of your other activities, but nothing – and Paul would repeat nothing – is so difficult that you would decide not to stick your toe in the water. So, jump right in, Paul says. The water’s fine!

Following his ostomy surgery, Paul Rea found some kinks in the road. These surfaced particularly when he opted to return to what were once treasured pastimes. One such pastime was travel, and he realized a good ole road trip wasn’t quite as easy as it used to be. Fortunately, some light research, talking things through with his wife, Michelle, and a strong dose of common sense taught him that getting ready to hit the road would simply take more planning than it had in the past. Undaunted, he learned to design even the shortest of trips with intention, took things in tiny bits and slowly. He considered even the smallest detail like the way he would have to adjust his seat belt for extended time spent in the car. Paul’s reading showed that he was not alone. His early trials were like those of most of his fellow ostomates. To give those coming up behind him, in today’s blog post, he shares 5 helpful tips to get back on the road.

Paul Rea says he is in no way a relationship or intimacy expert. But intimacy and sex are an important part of life. It’s a fair to say, after an ostomy, initially anyway, the subject may take on more significance. The physicalness of intimacy could seem awkward and initially more cumbersome. But it’s the emotional stuff that really stands front and center as ostomates worry how their new look could lead to rejection. So while Paul may not be an expert, he’s been there and realizes open communication, a good cuddle and a bit of a “whatever” may be the keys to a meaningful intimate relationship post-ostomy surgery.

Like most ostomates, Paul Rea felt the challenge of adjusting to everyday life following his ileostomy surgery. Plus, there were a few close calls with near mishaps. Whether general concern or near misses, Paul came to learn what could go wrong that would cause him on-the-spot embarrassment. That said, after some reflection and a bit of research, Paul an experience from his earlier years reclaimed his attention and paved the way for his learning that humor is, after all, the best lesson.

Don’t Let Your Ostomy Put Black Clouds on Your Return-to-Work Horizon

Paul Rea has worked in many environments both in and out of the office. He’s also gone through the throes of adjusting to life following his ileostomy. If there’s one thing he’s learned in the almost 2 years since his surgery is that freedom following an ostomy comes with planning before action. A return to work and/or the need to go to meetings is no different. When you plan yourself into a routine and get yourself into the right mindset, you can turn your fear of returning to the office into pretty much a piece of cake.

Life’s 180s can Happen so Quickly You Don’t Even know You’re Feeling Down

Paul Rea’s life had taken a true 180 since his ostomy surgery. But everything had happened so quickly, especially the surgery, that he hadn’t really given much thought to how he actually felt about the events of summer 2019. Yes, there were times when he’d felt he was all thumbs with physical self-care. And there were times when he had to take special precaution before heading out for a ride or to think about what to wear. But down, depressed, blue? These were never words he’d never used to describe himself. That was until a recent talk with a good friend. To his surprise, he discovered that he actually had been down at times. Blessed with support and carrying the lessons of positive upbringing, he’d always managed to turn his mood around. He recognizes others aren’t always so lucky. His advice to fellow ostomates: do whatever is necessary, get help, find support to hang tough and keep on keeping on as best you can.