Tag Archives | ostomate

Living An Active Life With An Ostomy; With Colorectal Cancer Survivor Doug Dallmann


Doug Dallman

Doug Dallmann leads a very active life despite his ostomy. That wasn’t always the case; however. When he awoke from his surgery for stage 3 colorectal cancer in 2010 he was devastated to learn he was left with a permanent ostomy. He was “filled with anxiety, depression and uncertainty.”

Adjusting to life as an ostomate took time, but within a few months he achieved his goal of completing a 100-mile century bike ride.

During our interview we covered:

  • Why he wanted to take on the physical challenge of hiking the Pacific Crest Trail and the unique challenges doing so with an ostomy.
  • The emotional challenge of accepting his ostomy and how he moved from “denial” to embracing his new life.
  • Navigating the social and dating scene with an ostomy.
  • Why he decided to compete in a body-building competition.
  • What’s next for him on his list of adventures.

Connect with Doug

His story featured on the Colon Cancer Coalition website: https://coloncancercoalition.org/2018/10/06/an-ostomy-life-unlimited/

On Instagram – https://instagram.com/pacnwtrekker

On Facebook – https://www.facebook.com/doug.dallmann

WE Have Cancer Links

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Know someone touched by cancer who has an inspiring story?

Nominate a guest to appear on the podcast – https://wehavecancershow.com/guest

Email Lee

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How One Person Can Influence Favorable Cancer Legislation, With Michael Holtz


How One Person Can Influence Favorable Cancer Legislation, With Michael Holtz

Michael Holtz is a 6 1/2 year survivor of Stage IIIB rectal cancer and is the author of the book It’s Not Harder Than Cancer. Michael first appeared on this podcast in 2015. You can listen to that interview here.

Michael and I discussed the cancer advocacy work he’s been doing with the American Cancer Society and as the Tennessee state representative for the American Cancer Society’s Cancer Action Network – ACS CAN.

In April 2018 the Provision CARES Foundation recognized Michael Holtz as the Patient Advocate of the Year.

 

Links Mentioned In The Show

Michael Holtz’ website – http://www.michaelholtzonline.com/

Michael on Facebook – https://facebook.com/michaelandrewholtz/

Michael on Twitter – https://twitter.com/michaelholtz

It’s Not Harder Than Cancer – Available on Amazon

 

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Supporting the Ostomy Community, With Deb Fox

Supporting the Ostomy Community, With Deb Fox

Supporting the Ostomy Community, With Deb Fox

Deb Fox has made it her mission to help the members of the ostomy community. She has created a private Facebook group – OstoMyFamily – to provide those with ostomies a private, safe forum to discuss all things ostomy. Her websites – ostomy211.com and ostomy211.org -provide numerous resources, along with support, for the ostomy community.

Deb received a complete hysterectomy in 2012 for ovarian cancer, and an Ileostomy in 2014 due to Ulcerative Colitis. The UC had cut the blood supply off to her small intestine, so she was left with 4 1/2 ft of the normal 25 ft of intestines. At the time, she had no insurance. “What good is having an Ileostomy to save your life when the quality of your life looks to be extremely debilitating?” Deb said. That is when she realized she needed to be one of the people to step up and make a change. The first thing she did was to locate the United Ostomy Associations of America (UOAA), and become a certified visitor. She then volunteered at the hospital where she received her surgery. It has blossomed from there. There are many, many reasons why someone my need an ostomy. Cancers, IBD, Birth defects, traumas, etc. This is why our ribbon is rainbow colors – It gives respect to all of the different colors of awareness ribbons.

Deb’s Links to Ostomy Resources:

  • ostomy211.com – is like a yellow pages directory for ostomates. It is broke down into categories so people can better locate the resources they need.
  • ostomy211.org – will give you a more detailed listing of our programs.
  • facebook.com/groups/ostomyfamily – is the online support group we have created for ostomates. It is a private group with over 2200 ostomates and nurses.
  • OstoMyCare. We are working to improve healthcare, thus quality of life to ostomates through collaborations in palliative care. From the doctors, nurses, clinics, and hospitals to support groups, home health, counselors, etc.
  • ostomysupplies.ostomy211.org – provides ostomy supplies for those who are experiencing financial hardships.

 

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Surviving Colorectal Cancer and Thriving With an Ostomy for 29 years

Surviving Colorectal Cancer and Thriving With an Ostomy for 29 years

Ann Favreau is a retired teacher, published author, and consummate volunteer.  She describes herself as a traveler who marvels at the awesome and finds wonder in the ordinary. Here is her story:

If you had told me in 1988 that enduring hours of surgery to have my rectum and part of my colon removed due to colorectal cancer would significantly contribute to a wonderful new journey in my life, I would have thought you were crazy.  However, that is exactly what happened. Not only have I been cancer-free since the operation, but I have been able to turn the experience into a positive one for me and thousands of others.

Colostomy is a dreaded word in most people’s vocabulary. The idea of having a plastic pouching system adhered to your abdomen to hold fecal waste is not a pleasant thought. Yet, I have managed to live a productive life in spite of altered plumbing.

After surgery I joined a local chapter of the United Ostomy Association (UOA).  They provided the information and support I needed. As a trained visitor, I sat by many a bedside to help others with practical tips and offer hope. Soon I became President of the local group and went on to work in the Field Service Program of the national organization helping other chapters work more effectively.

From 1996 – 2002 I served the UOA as Secretary, Vice President and President. Along the way I met hundreds of people whom I now call friends. I wrote The Healing Circle, a book of poems dedicated to all those who have diversionary surgery, and published messages of hope in the Ostomy Quarterly and Phoenix magazines. I just completed 11 years as the volunteer  Secretary for the International Ostomy Association and was aware of the plight of those in the global ostomy community. As President of the Friends of Ostomates Worldwide-USA, I have been able to address these needs in a practical way. This organization sends donated ostomy supplies to needy ostomates in developing countries.

I have been involved in efforts to address the prevention of colorectal cancer since my 1998 invitation to the White House Colorectal Cancer Prevention Initiative Ceremony by then first lady Hillary Clinton.  Katie Couric’s heart wrenching speech that day about her husband’s death due to this disease led to my personal and organizational involvement through the United Ostomy Association to begin prevention activities which included  spreading the message of the importance of knowing one’s family history.  I continue to serve as an individual member of the National Colorectal Cancer Roundtable.

I have served as a Buddy for the Colon Cancer Alliance for over 10 years.  Being able to talk to someone before or after surgery to provide information, inspiration and allay their fears is such a great use of my time. Locally I am facilitating the Venice, FL ostomy support group. I have touched people in small and large groups in a way that I never would have imagined in those early days dealing with pain and despair. My journey has taken me around the world, to the White House, and into the hearts of other survivors. This seemingly dreadful experience has enriched my life and helped me to make a difference in the lives of others.

What can you do to make a difference? Share your story. Revealing your personal journey with an ostomy helps others. Send your story to Colon Cancer Alliance Stories of Hope, Ostomy Connections and to the Phoenix magazine. You, too, can impact someone’s attitude by your revelations. Providing information, education, and support to other ostomates is a worthy endeavor. It has been very rewarding to me that my words have had a positive effect on others. I learned that a woman kept my poem Reclamation on her refrigerator and read it each morning to get through the day.

 

RECLAMATION 

Illness, pain, and surgery.

I’ve been cut apart.

Left to cope with healing,

And sorrow in my heart. 

But as my body starts to mend,

Self care becomes mundane,

A little voice within my soul

Murmurs this refrain…

You’re alive!

Ann’s book, It’s Okay to Have an Ostomy, is available on Amazon.com.

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Celebrating 20 Years Since He Was Diagnosed With Colon Cancer, With Kris Thompson

Kris Thompson

Celebrating 20 Years Free From Colon Cancer, With Kris Thompson

It’s been 20 years since Kris Thompson was diagnosed with Colon Cancer at the age of 18.

From his blog, Papa’s Got a Brand New Bag, here’s how Kris told his story:

“I’m going to lose my hair?!?!” Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer?

So there I was, barely eighteen years of age checking in at Johns Hopkins University Hospital for my colonoscopy. I had just walked the stage no more than a month ago to receive my high school diploma, now I’m lying on my side as nurses prepped me for my colonoscopy. I don’t remember being nervous as my grandparents and I waited for the results, as the whole experience felt surreal; I mean here I am waiting on the results of a colonoscopy at an hour no teenager should be awake, while all my friends were laying peacefully in their beds sleeping off a summer’s night of being a “normal” teenager, but I digress. It seemed like a lifetime before we received the results, and as fate would have it, not only did I have polyps, but so many in fact, that my colon was deemed unsalvageable, and in turn I would need a total colectomy. Little time was wasted as my surgery was scheduled for September 4, 1996 at the Mayo Clinic in Rochester, Minnesota, by one Dr. Roger Dozois, the same surgeon who performed my uncle’s colectomy many years earlier.

The summer flew by as they usually do, and the next thing I know I’m on a plane with my grandparents and uncle, flying from my hometown of Washington, DC to Rochester, Minnesota. We arrived two days prior to my surgery so I would be able to meet my surgeon, get marked for my temporary ileostomy, and complete the necessary paper work. Other than getting marked for my temporary ileostomy those two days prior to surgery were pretty much a blur, as the next thing that I remember is the night before surgery. After I was checked into my room the “real” preparation began. I was fed pills the size of quarters, while given enema after enema to clean out my system. Most of the night was spent in the bathroom, as my nurse was very liberal with the dispensing of the enemas, and if I wasn’t on the toilet having my life sucked out of me, I was vomiting up the lining of my digestive tract. After hours of being fed pills that could choke a horse and given enough enemas to clean out a cow, I was finally able to get some sleep before my big day.

The morning came with a knock at the door, and a nurse who greeted me with a valium to “relax” me before surgery. Moments later I was on a gurney destined for a surgery that I wasn’t prepared for. More than nervous and hardly “relaxed” my heart rate increased with each wheel rotation of the gurney, scheduled for a nonstop trip to the O.R. I had reached my final destination; it was white, bright, cold and unfamiliar. I was moved from my gurney to the operating table, and by this time I was all strapped in while having an oxygen mask was placed over my nose and mouth. “We’re going to take real good care of you Kristofer.” said the anesthesiologist, “now take a few deep breaths for me and count back from one-hundred.” “One-hundred….and that’s all she wrote, as my next memory was waking up in my hospital bed.

When I came to, I awoke to a packed hospital room, with my grandparents to the right of me, and my surgeon at the foot of my bed. My surgeon wasn’t alone as he was flanked with an entourage of white coats. I was confused enough without all these unknowns standing in my room, and before I had time to question, my surgeon walked to the side of my bed. “Kris, we found a tumor in your rectum during the surgery.” Wait! What? My mind was racing, trying to grasp the situation, and that’s when my vanity came into play. “Gramps, I’m going to lose all my hair?!?!” So after finding out I had cancer, my biggest concern was my hair, talk about priorities. Being the most caring, compassionate, empathetic and understanding man I have ever known I shouldn’t have been surprised by his response, “Kris, don’t worry, we’ll get you the best wig money can buy.” Now take a moment to realize the magnitude of my grandfather’s response. My grandfather just found out that I had cancer, and in a matter of moments he was able to process the severity of my situation, listen to my ridiculous concern, and without missing a beat, console me with what I needed to hear. Ridiculous or not, it was nothing short of amazing.

My surgeon informed me that I had stage III colorectal cancer, and with that I was given a forty percent survival rate. Listen, I am no math whiz, but if I had only a forty percent survival rate, that means I had a mortality rate of sixty percent, I was only eighteen! With the very next breath my surgeon leaned down next to me and said, “Kris, this is game seven, I need you to fight.” I was at a total loss, I didn’t know what to say, what to do, or how to feel, I was just so confused, so I did what I do best, pretend. I pretended that I was okay, and that my illness wasn’t that serious as that was the best way I knew how to deal. My psyche was just too fragile to handle the reality of the situation.

After a several months of being home, and finishing up my chemo treatment, it was time for me to go back to the Mayo Clinic for follow up testing. It would be a two day trip for my grandparents and me. The first day was spent being poked, prodded, scanned and stuck, nothing short of the usual, with instructions to follow up the next day. With my grandparents by my side, I sat silently staring at the floor waiting for the doctor to come in, and send me home with a clean bill of health. My head shot up as I heard a knock at the door, and in walked the doctor with my results. “Kris, the CT showed spots on your liver, and I would like to do a biopsy first thing in the morning.” Confused, I looked at him and said, “Doc, I can’t, our flight leaves in the morning,” then shot out my seat found an empty room down the hall and preceded cry every tear my ducts could store. Eventually I wiped the tears from my face, gathered myself the best I could, and made my way back to the doctor’s office. Once back in the room I pleaded with my grandparents as well as the doctor to let me go home as planned, and promised that I would have the biopsy done then. I was scared, I wanted out and home was my only salvation.

Once I was home there was a window of a few days before I was able to see my oncologist, and during that time I felt nothing. I couldn’t laugh, couldn’t cry and I couldn’t feel. I was completely numb, and as far I was concerned I was a dead man walking. Nothing would’ve prepared me for what I would find out the day of my appointment. When my oncologist took my grandparents and I back to his office, he had my CT results next to those of another patient. “Kris, you see those spots” he said, “They’re supposed to be there,” and pointed to the other CT scan who’s was a patient with a “healthy” liver. “That’s just the way the liver looks when scanned.” I didn’t know what to say; I was relieved, yet angry. I just spent the last few days walking around like a zombie, waiting what on what I was sure to be my imminent death. I left my oncologist’s office shaking my head, it’s not like I was told I had “spots” on my liver at some random clinic on the side of the highway, this was the Mayo Clinic, “thee” place to go for cancer treatment. Goes to show, never judge a book by its cover.

“Just when I thought I was out, they pull me back in.” It was once again time to go back to the Mayo Clinic for another follow up visit, and wouldn’t you know it, my CT results didn’t come back clean. I was told that I had a mass of what looks to be a tumor wrapped around my left ureter, which I was a little hesitant to believe considering what I was told during my last visit. Unfortunately for me there were no mistakes being made this time. I was shook to my core, didn’t know whether I was coming or going, or when, if ever this rollercoaster ride would end. The results came back from the biopsy, and thankfully the tumor was benign, but I wouldn’t get off that easy. The tumor I had was inoperable because of its location; it was also a “desmoid” tumor, common in patients with F.A.P. I was then put on a trial medication which I was told had some success with shrinking desmoid tumors, along with a referral to an urologist as the tumor was causing me bladder and kidney pain. Upon meeting with the urologist, I was informed that I would need to have a stent placed in my kidney to keep it dilated. After a few years of urine tests, sent placement, and replacements, my kidney showed that it was able to function without the stent. Oh, and the desmoid tumor? My last MRI showed no evidence of any mass around my ureter.

Fast forward to the fall of ’97, I was home recovering from my j-pouch surgery, I was feeling better, looking better and best of all living without an ileostomy, but I was about to receive the best news yet. While at the mall hanging out with my best friend my phone rang and it was my grandfather. “Kris, I just got off the phone with your doctor, and all of your latest tests have come back clean, you have no cancer in your body.” I ran out of the mall screaming “yes “at the top of my lungs, I was one year cancer free and I knew exactly how significant that was.

One year turned into two years, then five and here I sit today, almost twenty years later, free of cancer and lucky to be able to call myself a survivor. With all that being said I would be remiss to say that’s where my cancer story ended. The effects of cancer and its treatment will be with me for life as I still live with bladder and kidney pain due to what my urologist calls “radiation cystitis.” Also a few years after my j-pouch surgery I developed anal stenosis due to the radiation treatment. I was dilated a few times under anesthesia, and even had a surgery to try and rectify the situation, (no pun intended) but to no avail. The surgery left me not being able to control my bowels, and having to where a pad during the day and diaper at night. I lived this was for ten years, painting myself into a corner as my shame grew larger with each passing day. A decision needed to be made. On August 5, 2013 I decided to have surgery to receive a permanent ileostomy, and not only is it not nearly as bad as I remembered, my ostomy has given me my life back. Chalk my new found acceptance up to age, maturity or simply just knowing things could always be worse.

Cancer did a number on both my mind and body, but through it all I am still here. I’ve said it before, and I’ll say it again, it’s not our afflictions that define us, but how we choose to deal with them.

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No You Can’tcer, With Melissa Marshall


IMG_1462Melissa Marshall, the founder of The No You Cant’cer Foundation, was inspired to write Cancer’s First Fight song and start The No You Cant’cer Foundation after her own battle with colorectal cancer.

Melissa was first diagnosed in September of 2013 while prepping for a hip replacement surgery. A life-long dancer and singer, Melissa assumed the rectal bleeding, fatigue, and weight gain were all a result of thousands of high-energy performances. After months of escalating bleeding, constipation, and irregular bowel movements, she confided in a friend about her struggles. The friend urged Melissa to speak with a colorectal surgeon who, in turn, immediately paused the hip replacement surgery and sent Melissa for a battering of medical tests to determine what was causing all of these irregularities. After a colonoscopy, a tumor the size of a golf ball was found very low near her sphincter. It was cancerous.

After being diagnosed with stage III colorectal cancer, Melissa began the arduous wait to see a colorectal specialist that could offer her the care she needed to survive. Melissa ended up receiving a colostomy bag on November 14th, 2013 with little chance of a reversal. This meant that, for the rest of her life, she would be living with an ostomy bag. As she began chemotherapy on January 31st, 2014, as well as undergoing radiation from April to March of that same year, Melissa found her body ravaged by their effects. She was frightened that due to the ostomy bag, and the months of chemotherapy, she would never again resume her singing career.

However, Melissa beat cancer on July 17th, 2014, regained her strength, and began preforming, once again to rave reviews. From her victory over colorectal cancer, she was inspired to record Cancer’s First Fight Song, “No You Cant’cer”. From that liberating piece of music, The No You Cant’cer Foundation was born in an effort to inspire through song, raise awareness about colorectal cancer, and get rid of the stigmas surrounding the life-saving ostomy bag. During her battle against cancer, Melissa found her strength in the love of her friends, family, and other cancer fighters. Now, as she is free from cancer, Melissa sees it as her opportunity, and duty, to empower those affected by cancer and help them find their voice to say, “No You Cant’cer”!

The focus of this foundation is to not only inspire, but to educate. Colorectal cancer is not seen as “glamorous” and the ostomy bag is seen as something to be ashamed about. The No You Cant’cer Foundation believes that colorectal cancer deserve the same amount of research and visibility as the more mainstream cancers and that the ostomy bag is a life-saving prosthetic that helps people lead happy, healthy, lives. This is why the “It’s in the Bag” publications have come into effect. These informational pamphlets will be nationally distributed in hospitals and doctors offices. They will answer the frequently asked questions, dispel ostomy bag myths, and get readers in touch with some of the best resources available both locally and nationally.

Join the fight against colorectal cancer and ostomy bag stigmas today!

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Semicolon: Memoir of a Colon Cancer Survivor, With Mark Arsenault


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Semicolon: Memoir of a Colon Cancer Survivor, With Mark Arsenault

Mark Arsenault is a six-year survivor of colon cancer. He was diagnosed with Stage III colorectal cancer in July, 2009. He underwent chemo and radiation therapy, followed by surgery (anterior resection) in November, 2009, another round of chemo followed by “takedown” surgery in April, 2010. He wrote a blog about his experiences through his journey. His book, titled “Semicolon; Memoir of a Colon Cancer Survivor,” details his experience with colon cancer. Proceeds from the book, benefit The Colon Cancer Alliance.

Mark is also a former smoker. He has worked closely with the Centers for Disease Control and Prevention and was featured in this story on the CDC website. Mark also appeared in this CDC Anti-Smoking TV commercial:


Purchase Mark’s Book:

 

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Choosing to Lead a Positive Life With AFAP, With Daniel Shockley

Daniel Shockley

Choosing a Positive Life With AFAP, With Daniel Shockley

Daniel Shockley is a veteran of the U.S. Navy. At the age of 50 he was diagnosed with AFAP, Attenuated Familial Adenomatous Polyposis. AFAP is a subtype of a condition known as Familial Adenomatous Polyposis (FAP), which causes an increased number of colon polyps, and therefore, an increased risk of colon cancer in the people who have it.

Though faced with life saving and life-altering surgery, Daniel has chosen to live a positive life.

My mindset from the onset can best be described as: I tend not to think about things I am unable to control; medical issues I am unable to control. What I can control is my positive attitude – Daniel Shockley

What I Learned From Daniel Shockley

  •  Understand as much as you can about your condition

    • Understanding your condition will help you adapt and will allow you to press on with your life.

  • Worrying doesn’t help.

    • In Daniel’s words “worrying didn’t cause my condition;  therefore,worrying will not make it go away.”

Daniel has made advocacy his life’s work. Here are the organizations that Daniel is working with:

The Colon Cancer Alliance

Fight Colorectal Cancer

Hereditary Colon Cancer Foundation

National Organization of Rare Disorders

Wound, Ostomy and Continence Nurse Society

United Ostomy Associations of America, Inc.

Chris4Life

Michael’s Mission

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“It’s Not Harder Than Cancer” – With Author, Michael Holtz

Michael Holtz

Michael Holtz – “It’s Not Harder Than Cancer”

Michael Holtz is a stage 3 colon cancer survivor and author of the new book, It’s Not Harder Than Cancer. During our conversation, Michael talks about his career with the American Cancer Society, and how his personal experience with colon cancer, compelled him to make a career change and leave the American Cancer Society. Disagreeing with those who call their own experience with cancer, “a gift” (he said it’s a gift he would like to return), he does acknowledge how his experience with the disease has resulted in new friendships, a stronger marriage and a greater focus on gratitude for even the smallest things life has given him.

What I Learned From Michael Holtz

  • You can live a normal life with a colostomy.

    • Michael recently completed a 26.2 mile marathon!

  • Surviving cancer can impact your life in a positive way.

    • Michael has experienced new friendships, new career opportunities and stronger personal relationships since conquering colon cancer.

  • Your friends & family “portrait” after cancer will not look the same as the one before your illness.

    • A common theme; some friends and family will vanish into the shadows during your illness, only to be replaced by people you weren’t expecting to be there for you.

Links for Michael Holtz:

Michael’s website: Michael Holtz Online

Buy Michael’s Book on Amazon.com: “It’s Not Harder Than Cancer”

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Living Life With a Colostomy, With Tony Pace


Lving life with a colostomy - Tony PaceStage 4 Colon Cancer survivor, Tony Pace, made a life-changing and brave decision after completing a very difficult journey through his treatment.

After bladder reconstruction surgery, a partial colectomy, a partial hepatectomy, followed by chemotherapy, he made the decision to have a permanent colostomy.

During his quarterly colonoscopies, his doctor would remove between 6 – 8 polyps. This continued for over a year and a half. Tony was concerned about both the risk of a tear each time polyps were removed, and the risk that a potentially cancerous polyp may be overlooked. These were chances that Tony no longer wanted to take; hence, the decision to have a permanent colostomy.

What I Learned From Tony Pace

  • It’s your body and your life

    • Make the decisions on your medical care that are right for you.

  • You can lead an “almost” normal life with a permanent colostomy

    • Tony works in a physically demanded job. While he has had to make some minor adjustments to his daily routine, he continues to lead a very active lifestyle.

  • Attitude is everything! Tony has a terrific sense of humor and a great outlook on life.

    • My favorite quote from Tony is “Never take things too seriously and learn to laugh. You don’t have control over most things that happen to you on this journey.”

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