United Ostomy Associations of America
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Tag Archive for: colorectal cancer

Smashing Cancer and Stoma Stigma

Colorectal Cancer, Colostomy, Emotional Health, Exercise/Sports, Ileostomy, Ostomy Awareness, Ostomy Tips, Ostomy Videos, Patient Stories, Personal

By Kevin Smets

I never imagined that one of the most defining chapters of my life would begin just one month before my daughter was born.

In 2020, I was diagnosed with stage 3 colorectal cancer. A few weeks later, as my family was preparing to welcome my daughter into the world, I was preparing for something entirely different. I started chemotherapy and radiation the very same week she was born. While most new dads are figuring out diapers and sleep schedules, I was learning how to fight for my life at the same time I was learning how to be a father.

Through it all, my wife Dasha was the backbone of our family. She took care of both of us, stepping into a role that no one ever expects to have to play. Watching her carry that weight with strength and love is something I’ll never forget.

Before everything changed, I was part of something truly special called The Schmoedown – it was like WWE meets movie trivia, where larger-than-life characters and real competition collided. I stepped into that world as “The Smasher,” and what started as a persona quickly became something the fans rallied behind in a very real way. They even started a #SmashCancer movement that really carried me through it all, along the way the fans even held a 24-hour stream fundraiser that literally lifted my family up financially while I couldn’t work for nearly a year.

That preparation didn’t just help me physically, it gave me control in a situation where most things felt out of my hands.

And then after nine months of fighting, under the care of such wonderful oncologists and surgeons at UCLA medical center, I underwent stoma surgery. But here’s something that made a huge difference for me mentally. About five months before the surgery, I already knew there was a strong chance I would end up with a stoma. So instead of avoiding it, I leaned in. I researched everything I could. In my research and quest to be more educated I leaned on sites like Ostomy.org and colonclub to really acquaint myself for the journey ahead, and it was a crucial part of my surgery prep.

By the time ostomy surgery came around, I was so prepared that nurses actually commented that I knew as much as they did. That preparation didn’t just help me physically, it gave me control in a situation where most things felt out of my hands.

Today, I’m proud to say I’m in remission.

But the journey didn’t stop there.

I decided to start sharing my story online, documenting my stoma and ostomy journey. The reason was simple, and honestly, a bit personal. A friend once told me their cousin said they would rather die than have an ostomy. That stuck with me. I couldn’t shake it. And I knew right then that there was a stigma that needed to be broken.

So I made it my mission to smash that stigma.

Since then, I’ve received messages from people still in their hospital beds, sometimes just waking up from emergency surgery, telling me they found my content and it helped them feel less alone. Those messages mean everything to me.

If sharing my experience can help even one person feel stronger, more prepared, or more hopeful, then it’s all worth it.

This journey isn’t just about survival. It’s about mindset. It’s about showing that life doesn’t end with an ostomy, it just changes. And sometimes, that change can lead to a purpose you never saw coming.

———

In addition to Kevin’s Youtube channel you can find him on TikTok and as @Kevsmashcancer on Instagram.

March 21, 2026
https://www.ostomy.org/wp-content/uploads/2026/03/smash-cancer-logo.jpg 958 959 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-03-21 22:05:182026-03-21 22:05:18Smashing Cancer and Stoma Stigma

Finding Community, Purpose, and Voice After Colorectal Cancer and Permanent Colostomy

Colorectal Cancer, Colostomy, Ostomy Tips, Ostomy Videos, Patient Stories, Personal, UOAA Conference

By: Sandra James, ACSW

Instagram.com/@colostomyforever

www.youtube.com/@SandraJames-LivingIt

When I was diagnosed, the first emotions that hit me were disappointment, confusion, and shame. I had spent months believing hemorrhoids were the only source of my problem. There were no other symptoms at first that would alert me outside of hemorrhoids, and when I saw the blood, I attributed it to hemorrhoids and something common and manageable. Cancer never crossed my mind. I never imagined that something as serious as colorectal cancer was there quietly invading my body without my knowing. When the diagnosis came, it felt disorienting. I kept replaying the past in my head, wondering how I missed it, how something so big could have been there while I carried on with my life.

When people asked what kind of cancer I had, I struggled to say the words out loud. Saying it was in my rectum felt heavy, embarrassing, and deeply shameful. I found myself wanting to deflect, minimize, or avoid the conversation altogether. That shame added another layer to the confusion and disappointment I was already carrying—an emotional weight I never expected to come with a diagnosis.

I had no one I could sit across from, look in the eyes, and say, “Do you understand this?”

After my diagnosis, my medical team gave me pamphlets and printed materials explaining my condition and treatment such as colostomy surgery. The information was thorough and medically sound, but it wasn’t what I needed at that moment. I wasn’t looking for a curriculum or clinical language—I needed to understand what was happening to me right then, in real life. What helped me most was hearing from real people.

Sandra at UOAA’s 2025 National Conference in Orlando.

I spent long stretches of time watching videos on YouTube where people openly shared their cancer journeys, their fears, their side effects, their recoveries, and their lives beyond diagnosis. Some had their own YouTube channels. Others were featured on platforms like The Patient Story. Watching them helped me process what I was facing in a way pamphlets couldn’t.

While YouTube helped me feel less alone in the early days of my diagnosis and treatment, it didn’t fully replace the need for real, human connection. I didn’t know anyone in my immediate community who had an ostomy. I had no one I could sit across from, look in the eyes, and say, “Do you understand this?”

At some point, I came across another ostomate on social media who mentioned the United Ostomy Associations of America (UOAA) National Conference. I remember feeling something shift in me when I heard about it. It felt like an invitation — not just to an event, but to belonging. I registered, booked a flight, and went — not fully knowing what to expect, but knowing I needed to be there. Those three days became one of the most meaningful experiences of my entire cancer journey. From the moment I arrived, I felt an overwhelming sense of familiarity and ease. I was surrounded by people who felt like they had known me my whole life, even though we had just met. There was no shame, no need to explain myself, no awkwardness. Just understanding. UOAA’s conference wasn’t simply educational — it was grounding. It wasn’t just supportive — it was life-sustaining. For the first time since my diagnosis, I felt whole again. Not fixed. Not “back to normal.” But grounded in who I was becoming.

From Watching to Sharing: Why I Started My Own Channel

The realization to start my own channel came while I was writing my book, My Colorectal Cancer Journey. By the time I reached chapter two, I understood that telling my story solely through a book would take time — time that many people facing a new diagnosis surgery simply don’t have. I remembered how desperately I needed immediate connection and reassurance, and I knew I wanted to offer that same immediacy to others.

Starting a YouTube channel felt less structured, more human, and more accessible. It allowed me to speak honestly, show the realities of ostomy life, and create space for conversations that often don’t happen elsewhere — conversations about fear, shame, stigma, resilience, and growth.

My channel wasn’t created to educate in the traditional sense, even though many people now describe it that way. It was created to connect. To say, “You’re not alone,” without conditions or explanations. To show what life can look like after diagnosis, after surgery, after everything changes.

The same connection I once searched for, I now try to offer — one video, one conversation, one shared moment at a time.

View a selection of Sandra’s videos at the links below and look for her unique perspective on UOAA’s YouTube Channel soon!

Caring for My Stoma: What Works for Me

My New Travel Bag: What I Take with Me

My New Reality Bag Change: Living with a Permanent Colostomy Bag

The Truth About Living with an Ostomy Bag (Myths vs. Facts)

How to Measure Your Stoma

March 3, 2026
https://www.ostomy.org/wp-content/uploads/2026/02/Sandra-James-1-scaled.jpg 2560 1920 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-03-03 14:32:302026-03-04 11:32:09Finding Community, Purpose, and Voice After Colorectal Cancer and Permanent Colostomy

UOAA Supports Colorectal Cancer Survivors

Advocacy, Colorectal Cancer, Colostomy, Ileostomy, Ostomy Basics, Ostomy News, ostomy reversals, Support Resources

By Cheryl Ory, UOAA President

While advances in cancer treatments rise the news on colorectal cancer has been alarming. Colorectal Cancer is the 2nd leading cause of cancer death in the U.S. and the number one cancer killer of people under the age of 50 according to the American Cancer Society.

The deaths this year of the beloved actors James Van Der Beek and Catherine O’Hara have brought more awareness to colorectal cancer. Hopefully the spotlight during this National Colorectal Cancer Awareness Month continues to encourage more people to be screened. UOAA stands alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving more funding and attention to what is a colorectal cancer crisis.

United Ostomy Associations of America (UOAA) has been supporting cancer survivors and others living with an ostomy for over twenty years so that they can have the best quality of life possible. If your cancer requires life savings ostomy surgery, remember – you are not alone. UOAA estimates that between 725,000 to 1 million people in the U.S. of all ages and backgrounds are living with an ostomy, and over 100,000 ostomy surgeries are performed each year.

UOAA President Cheryl Ory at the Fight Colorectal Cancer United in Blue Rally in Washington, D.C. in 2024.

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ostomy, ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have two guides written from a patient’s perspective, Living with a Colostomy and Living with an Ileostomy, to help you learn as much as possible before and after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Even online peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations.

As you recover, if you have a descending or sigmoid colostomy you may want to ask your doctor or ostomy nurse if you are a candidate for colostomy irrigation. I utilize colostomy irrigation, which is similar to an enema, as a way to have control over my output schedule that fits my lifestyle. UOAA seeks to raise more awareness for the practice and encourages medical professionals to discuss this treatment option with patients who may benefit.

If you have a  medical question contact your doctor or ostomy nurse. If you need help finding an ostomy nurse use or our outpatient ostomy clinic finder or make plans online with a virtual ostomy clinic. If you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

March 2, 2026
https://www.ostomy.org/wp-content/uploads/2026/03/colorectal-cancer-survivors.png 788 940 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-03-02 13:11:302026-03-10 23:26:39UOAA Supports Colorectal Cancer Survivors

We’re here for Colorectal Cancer Survivors

Advocacy, Colorectal Cancer, Colostomy, Ileostomy, Ostomy Basics, Ostomy News, ostomy reversals, Support Resources

 

By Cheryl Ory, UOAA President

President Biden has proclaimed March 2023 National Colorectal Cancer Awareness Month. The American Cancer Society says that colorectal cancer is the third leading cause of cancer related deaths in both men and women. On another note, the death rate has been dropping for several decades. One reason is that treatments have improved. Another reason is that colorectal polyps are now being found more after screening and removed before they can turn into a cancer.

UOAA Advocate, ostomate and colorectal cancer survivor Allison Rosen speaks on the National Mall as part of the United in Blue Rally sponsored by Fight Colorectal Cancer. Video: United in Blue Rally on the Mall (1)

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

I’m happy that UOAA is standing alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving attention to the alarming rise in young people with colorectal cancer.

With younger people being as risk and diagnosed , The U.S Preventative Services Task Force lowered the recommended screening age to 45 in 2021.  One in five colorectal cancer patients is between the ages of 20-54. Talk to your doctor about options for colorectal cancer screening. As the Colon Cancer Coalition states with earlier screening and detection, “Colorectal Cancer can be  Preventable, Treatable, Beatable.”

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Here at United Ostomy Associations of America (UOAA) we have a long legacy of supporting the survivors of cancer and many other conditions so that they can have best quality of life possible. If your cancer requires a life-saving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have new Living with a Colostomy guide and ileostomy guide to help you learn as much as possible before or after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a  medical question contact your doctor or nurse, but if you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

March 14, 2023
https://www.ostomy.org/wp-content/uploads/2023/03/colorectal-cancer-awareness-month.png 389 648 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2023-03-14 14:11:472023-03-14 17:21:49We’re here for Colorectal Cancer Survivors

Twists and Turns of J-Pouch Recovery

Continent Diversions, IBD, Ileostomy, J-Pouch, ostomy reversals

By Robin Glover

The recovery process for a j-pouch is just that. It’s a process. It takes time and patience and is different for everyone. For some, it can be relatively easy. For others, it can be a winding path with twists and turns just like the colon that was removed for it.

But one thing is the same for practically everyone: j-pouch surgery offers hope for a return to a life that’s less encumbered by the alternatives. Seriously, who doesn’t want to poop out of their butt again if given the opportunity? Oh, and getting rid of that disease-ravaged large intestine is a plus, too.

What Is A J-Pouch?

In case you’re reading this to research information for yourself, friend or family member, here’s a quick explanation of what a j-pouch is:

Medically known as Ileal Pouch Anal Anastomosis (IPAA) surgery, it involves removing the entire colon and rectum and then connecting the small intestine directly to the anus. The term j-pouch refers to the shape of the “pouch” that’s created when the surgeon folds the small intestine on itself and creates a reservoir to hold waste until it is passed through the anus. It can also be known as an s-pouch or w-pouch based on how it’s surgically constructed. J-Pouch surgery is most often done in cases of ulcerative colitis where there is no disease in the small intestine or as a result of FAP, colorectal cancer or a bowel perforation.

The surgery for a j-pouch almost always involves two or three steps. The first step, and usually the more major surgery, is to remove the large intestine. At the same time, an ileostomy is created that will be used until the small intestine is reattached. This will be a temporary external pouch.

Stages of J-Pouch Surgery

Depending on individual circumstances, the first surgery can also involve removing the rectum and creating the internal j-pouch. However, it can also be its own separate procedure. But either way, the final step is to reverse the ileostomy and connect the small intestine to the anus. At this point, no external pouch is needed and the traditional route of passing stool can resume.

Be aware that the patient has the right to decide between a J-pouch or keeping the ostomy and should know not all temporary ostomies are able to be taken down and not all J-pouches are able to be connected.

Early Recovery From J-Pouch Surgery

It’s an exciting experience when you wake up from the final surgery and see that there’s no longer a need to have a pouch attached to you. What was once your stoma is now a still pretty nasty wound, but one that will heal and become just another proud scar.

Things won’t be working quite yet though. It will be a few days before you actually have a bowel movement. Sometimes it can take longer, but that’s not a big deal. When you’re in the hospital you’ll be monitored and well taken care of. You likely won’t go home until your doctors are sure everything is working correctly, including being able to eat and pass solid food.

Everything that comes out will still be liquid, though. It will be a little bit before you start passing anything even semi-solid. And you might not ever get to that point or only have it happen on rare occasions. There’s nothing unusual about that.

J-Pouch Guide

Diet Right After Going Home

The diet you follow after getting home from the hospital will be communicated to you by your doctor and you’ll probably go home with many guides and resources. Mainly, staying hydrated is very important and avoid raw fruits or vegetables, nuts, whole grain, seeds, or anything else that doesn’t digest in around two hours. Since you no longer have a large intestine, food has much less time to be processed and if you eat a handful of nuts they’re going to come out the same way they went down.

Check the Eating with an Ostomy Guide for a much more complete diet guideline.

But, even worse, it can cause a blockage. Blockages are the bane of a j-pouch’s existence. You need to be careful about what you eat (typically called a “low residue” diet) and chew your food thoroughly. Chew extra. And then some more. Take small bites and don’t take any risks right away. Introduce new foods slowly.

NOTE: Your doctor or dietician will know the best foods to eat and what to avoid for your specific needs. Always follow their directions before anything you read on the internet.

Getting To Know Your J-Pouch

It can take a while after surgery to completely adjust to your new plumbing. You’ll learn what foods are “safe foods” and which to avoid. You’ll also learn about how your j-pouch behaves and how it affects your daily life.

For example, you’ll start to get an idea of how many times per day you’ll go to the bathroom and what consistency you can expect. You’ll also learn what each sense of urgency means and when you need to go to the bathroom right away and when you can hold it. It will feel like you need to go to the bathroom a lot and you’ll probably actually need to at the beginning. But, over time, your j-pouch will stretch and grow to be able to hold more before needing to be emptied.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

You’ll Experience Butt Burn

Speaking of going to the bathroom a lot, you may experience what is known as “butt burn.” This is because, on top of going to the bathroom more often, without a large intestine your stool will be much more acidic from digestive enzymes.

It’s necessary to take special care and make sure everything is extra clean. A bidet is a great idea because rubbing with toilet paper can also cause irritation. There are also many creams and lotions you can use to soothe and protect. Zinc-based lotions are a good place to start. And get some disposable gloves while you’re at it.

You may go to the bathroom up to 20 times a day (or more) and experience irritation from going so much. But, it will get better as you learn more about your j-pouch and develop processes that work best for you. In the end (no pun intended), you’ll get to a point where you’re comfortable and know how to manage it like an expert.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

It’s Not Always Easy

As mentioned, j-pouch recovery is a process. At the beginning, there will be accidents (typically nighttime) and discomfort. It’s a whole new way of digesting food and your body needs time to adjust. And you will need time to adjust to it too. It’s a major change.

Be aware of possible complications such as pouchitis and tell your doctor if you have more frequent or blood in your bowel movements.If you have a j-pouch or need one, you’ve already been through a lot. You know you’re resilient and can make it through almost anything. This is just another step in your journey.

Don’t let any of this discourage you. There’s a reason you decided to get a j-pouch and there’s a wealth of resources and support out there to help. Everything you will experience has been experienced before and the j-pouch community is always ready to help. But keep in mind that social media is often a place to vent so you might see more negative than positive posts.

So focus on the good, be patient, and look forward to enjoying pooping out of your butt again!

 

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

February 28, 2022
https://www.ostomy.org/wp-content/uploads/2022/02/J-Pouch-Recovery-twists-and-turns.jpeg 924 1640 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2022-02-28 12:36:302022-03-01 14:33:39Twists and Turns of J-Pouch Recovery

Katie Lee’s Story

Colorectal Cancer, Colostomy, Patient Stories

My name is Katie Lee, and I was diagnosed with stage 1 rectal cancer at age 33, only eight months after the birth of my second child. My tumor was […]

Read more
May 12, 2021
https://www.ostomy.org/wp-content/uploads/2021/05/colon-club-2016.jpeg 480 480 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2021-05-12 11:01:322021-05-12 11:20:57Katie Lee’s Story

A Tribute to a Real Life Hero

Colorectal Cancer

By Ellyn Mantell

The untimely, shocking and terribly sad death of Chadwick Boseman added to the pall in the air last Saturday morning. I looked at my CNN feed on my desktop with my mouth agape. How could it be that such a beautiful and talented man could die so young? And what evil transgressor claimed his life? Like so many, I admired his work for the past few years. He broke my heart portraying the challenging life of one of my husband Bruce’s baseball icons, Jackie Robinson in the movie 42. He played him with bravery, grit and quiet determination and I immediately fell in love with him! As the expression goes, “he had me with his smile,” when he was treated fairly. Sadly, Jackie Robinson was mistreated by the very society that valued him as a ball player. Chadwick Boseman got that, and made us all get it! And in the movie Get on Up, he portrayed James Brown, showing his incredible versatility, as well.

Black Panther, although I assumed would not be my jam, as the kids would say, turned out to be fantastic, and once again, Chadwick carried the film. He was such a likable actor, and his warmth and dignity always came through.  And I felt the same warmth and dignity from him in Da 5 Bloods, as he captivated and commandeered the screen.

In real life, where there were no cameras, Chadwick Boseman was a true, real-life hero. Apparently, eschewing publicity and accolades, he visited sick children and became someone in whom they could trust. Little did any of them, or us, know what was happening in his own life.

Suffering for 4 years with colon cancer, he handled every series of meds, chemotherapy and surgeries privately and quietly. Bulking up or slimming down for a role in a movie, he did it with little fanfare, and certainly, no hint of what his body was enduring over the grueling months and months of treatment. His is truly not a story of how he died, but of how he lived.

However, in his death, there is a message for all of us. Chadwick was 43 years young when he succumbed to this horrible disease. We think of colon cancer as an older person’s disease, but clearly, it is not, and there are many younger with it. The statistics also say that black and brown young people are more vulnerable. Let this be a warning for all…get tested! A colonoscopy isn’t fun, but it is imperative. It isn’t the first thing people want to do during the pandemic, but it is not to be ignored. A test widely available, and not to be missed, could not only save your life, but save the demanding treatments that our poor hero endured. I have read he had a temporary ostomy, which was reversed, and we will probably never know if that is true. It doesn’t matter…in his usual way, our hero drew attention to the deadly disease that needs to be identified and treated early for best chance of survival.

Deanna Brown-Thomas, daughter of the late James Brown said Chadwick visited before filming Get on Up, and that he was “the epitome of Black Elegance.” May I take that comment one step further? I would like to point out that Chadwick Boseman was the epitome of Human Elegance, a man in full, to be appreciated, to be admired, to be emulated, and a leader for us all.

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

September 8, 2020
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Gina Day, left, an ostomy nurse and affiliated support group leader confers with Certified Ostomy Visitor, Tim Slutter “It really takes another ostomate to help reassure new ostomates they are not alone and there are many others out there living a normal life. I hear time and time again how important this program is in making patients comfortable having an ostomy,” Tim says.

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UOAA’s Ostomy Patient Visiting Program is one of the most important services we provide through our over 300 Affiliated Support Groups (ASG). This program offers person-to-person support, reassurance and practical information to those who have or will have ostomy related surgery and their caregivers. Ostomy visitors who have completed UOAA’s Certified Visitors Training Course through their ASG will have a clear understanding of their role and responsibilities, and will strive to be a central member of the ostomy patient’s rehabilitation team (includes the surgeon, WOC nurse, hospital floor nurse and ostomy visitor.)

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United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax-deductible. For more information about giving to UOAA click here.
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December 2, 2019
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March is Colorectal Cancer Awareness Month

Colorectal Cancer, Colostomy, Ostomy News

UOAA Supports the Survivors of Colorectal Cancer

 

Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.

Recent research has confirmed what many have long suspected–more young people are dying of colorectal cancer. Ten percent of all new colorectal cancer patients are under the age of 50 and are too often misdiagnosed.

People with other bowel diseases have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

If you need to have lifesaving ostomy surgery because of colorectal cancer or any other reason, education and peer-support is available from the approximately 300 affiliated support groups of United Ostomy Associations of America. Ostomy patients of all ages and their families, friends and caregivers are welcome. Find a meeting near you today. You are not alone.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

March 6, 2018
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