Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he now felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Seven’s death inspired him to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

Little also wanted to do more to help people living with an ostomy. He reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Following your ostomy surgery, you will no doubt have an adjustment period of figuring out your new routines and schedule. You will be learning about your appliance, how to use it, when to change it, and how it works. Although there may be frustrating and discouraging days, as you get the hang of your body and the newness of it all, you may also find yourself fascinated with your body’s adaptability. Some of the most resilient, inventive and strong people are ostomates who are changing the way people think by helping to reduce shame around ostomies as well as creating networks and communities to encourage and support others in similar situations.

Body Love

We live in a world where we are bombarded on a daily basis by media showing us advertisements of what beauty should be. The unreachable goals are already set, and then you throw in an ostomy? How in the world are we supposed to love our bodies when we feel so different? Building confidence begins with you. It begins with self-love and embracing your uniqueness. This can take time, and giving yourself the time to heal (both literally and figuratively) and come to terms with the changes and the new daily rhythms will go a long way in boosting your confidence. The great thing about confidence is that it is contagious. Others can feel it in the way you talk, walk, and are proud about yourself and your body, and when they sense it, it transforms the way they see you. This doesn’t mean that self-love is easy and immediate, but it does mean that it is a possible and attainable goal. One of the ways to lead yourself into recovery and learning to love your body is to get active. Maybe you love to run, swim, or hike in the mountains, or you’ve always wanted to join a gym but your disease was holding you back from the commitment of it. Have you always wanted to learn an instrument, or join a band? There are amazing people out there with stories of how they overcame their fears, and also how they discovered the right product for their unique lifestyle and activity.

Every body is different and being patient with yourself and your healing process is vital, especially within the first few months. While inspirational stories about others can help to normalize your situation, it is also completely normal to feel discouraged and down at times. If you are feeling extreme discouragement or hopelessness, don’t hesitate to reach out to a licensed therapist or a healthcare professional. It is important to be able to share as honestly as possible about your situation so that you can begin to move forward.

Inspirational Ostomates

If you are looking for some inspiration from fellow ostomates, there are many platforms out there with information to connect you with people and resources. Feeling like you need some encouragement in embracing your body and its changes? This video is full of helpful information as well as inspiring individuals just like you. As you begin to enter the world of other ostomates and hear their stories, not only will you be able to relate with them, you will also find that they are paving the way for others to be confident in their bodies and, in many cases, thankful for their ostomy and appliance. Maybe their stories will be the push you need to reclaim your life and find that confidence that you know you have in you. Don’t just stop there, why not become one of the inspirational stories that someone else undergoing a surgery leading to an ostomy can read about? Embrace your new life and body.

For More information, visit www.coloplast.us.

Editor’s note: This educational article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

About 4 years ago, I awoke to the alarm on my cell phone, and for some reason it seemed to be extra loud this time. I had probably only slept for about 2 hours, but still, I anxiously jumped out of bed with a nervous sense of excitement. Today was the day that would forever change the path of my life. Today was the day that I was headed to the Mayo Clinic Hospital in Phoenix Arizona to have an extremely risky abdominal cancer surgery with no real guarantees that I would even survive it. I had no idea that today was the day that would begin the toughest fight of my life.

You see, at the age of 51, I was diagnosed with “Pseudomyxoma Peritonei secondary to Well-Differentiated Mucinous Adenocarcinoma of the Appendix”. Ultimately this means that years ago, a cluster of cancerous cells had formed in my appendix which caused it to eventually explode. Subsequent to this painful event, the cancerous cells spread themselves throughout my abdominal cavity attaching and growing on the exterior of several organs and producing a considerable amount of ascites fluid. My surgeon explained to me that my condition was extremely rare, and risky with maybe a 30% chance of survival. He agreed to perform the surgery, but looked me in the eyes and said only if I will agree to do my part and be willing to fight for my life!

After the twelve and a half hour long surgery, I woke up to my family hovering over me, and praying for strength and healing. As I became more aware of where I was, I began to notice the multiple tubes, cords and electronic devices attached to me. The doctors and nurses were constantly coming in to check on me, making adjustments to my I.V., monitoring my pain level, and recording my vital signs. A little later, I was paid a visit by my surgeon and he introduced me to someone referred to as my ostomy nurse. I didn’t even realize that I had this bag attached to my abdomen until she asked for my permission to inspect it. Prior to the surgery, I remember my surgeon explaining to me and my wife that an ostomy bag was a possibility, but this was the least of my concerns and I didn’t really comprehend what that actually meant. Along with a couple of other organs, my colon was completely removed and I now had to embrace life with an ileostomy.

Robert at the Arizona Run for Resilience Ostomy 5k, “the sense of family, acceptance and understanding at this event provided much needed encouragement.”

 

For the first year, I dealt with it as best as I could, but in the back of my mind I believed that soon, I would be able to have the reversal surgery and no longer have to deal with an ostomy. As I was approaching the one year anniversary of becoming an ostomate, on Facebook I came in contact with a beautiful soul by the name of Jearlean Taylor. You have probably heard of her, and know that she has been a double ostomate since early childhood. We chatted for a while, and after a detailed discussion, I was convinced that having an ostomy wasn’t so bad. A few days later, I sat down with my surgeon to discuss the possibility of the reversal surgery, and we concluded that in my case, I would actually enjoy a better quality of life by keeping my ileostomy, which now has been named Paco.

Now that the decision had been made to keep Paco, I began to research ostomies and discovered the United Ostomy Associations of America. Come to find out, they were having an ostomy conference in California the very next month, so I

Robert at UOAA’s National Conference where he discovered he was welcomed into the “ostomy family.”

booked it, and made my way to Cali. Not really knowing what to expect, I was pleasantly surprised and almost overwhelmed with gratitude as I was so warmly embraced into the ostomate family. I learned so much about ostomies, and the stories shared by other ostomates really inspired me and gave me the courage to now tell my story. Last year, I finally felt I was physically strong enough to participate by walking in the Run For Resilience Ostomy 5K in Mesa, Arizona. Again, the sense of family, acceptance and understanding at this event provided much-needed encouragement.

 

I am inspired to inspire others by publicly sharing my journey of conquering cancer and living with an ostomy. Through music, speaking and near the completion of my first book, I am telling it all so that others will realize that life experiences will ultimately make you, and not break you. I have come to the realization that my ileostomy has not only changed my way of life but has actually contributed to saving my life. I am forever grateful…

“It’s easy to say what you’re willing to die for, but there is freedom in knowing what you’re willing to live for”.

–Robert Harrion

Follow me on Facebook, Instagram, & YouTube

www.RobertHarrion.com

BookMe@RobertHarrion.com

Enjoy a trouble-free transit with these travel tips.

If you’re traveling by airplane, car, bus, train, or cruise ship, you might be stressed about your ostomy needs during the trip. Don’t worry. With a little preparation, everything can go smoothly.

It’s also a good idea to start with short trips away from home to build up your confidence. Once you’re reassured that your pouching system stays secure during normal day-to-day activities, you can start to venture farther.

Here are a few tips to help you be fully prepared and comfortable, no matter how you travel.

Luggage weight limits: Are you traveling by air with a lot of supplies? Check with your airline and your country’s federal travel agency (e.g., the Transportation Security Administration in the United States) for the luggage weight limit. Weigh the luggage before you go. It may be helpful to use a portable luggage scale. If you’re over the limit, check to see if your airline has a special allowance for medical supplies.

Forbidden items: The International Air Transport Association (IATA) forbids dangerous items on board airplanes. For example, ether, methylated spirits, or flammable aerosol adhesives and removers are considered fire hazards. Scissors also may not be allowed in carry-on luggage – check with your airline or pre-cut all of your skin barriers before traveling.

Pre-boarding security checks: At airports, your carry-on luggage will be inspected at the security baggage check before boarding. If you have medications, get a card from your healthcare professional that explains why you need them. Some countries do not allow certain medications, such as codeine, to cross their borders. A travel communications card from an ostomy association in your country may also be available. United Ostomy Associations of America (UOAA) offers a travel card to help you be ready for searches or checkpoint questions.

Using airplane toilets: During a long flight, there can be long lines for toilets, especially after meals. Be alert for a chance to use the toilet when most people are in their seats. It’s also a good idea to request a seat near a toilet.

Car travel: Your car seat belt should sit across your hip bone and pelvis, not your abdomen and stoma. If you want to give your stoma extra protection from the strap, you can buy a seat belt pad. You can also use an extension bracket to lower the angle of the belt across your body.

Cruising with a stoma: Are you worried about taking a river, lake, or ocean cruise? Don’t be. If you’ll be away from land for a few days or more, just pack double the supplies you need. Plus, follow these simple precautions and you’ll have a trouble-free voyage.

View or print the full PDF booklet Living with an Ostomy: Travel from Hollister.com.

For similar articles on traveling with an ostomy and other topics, visit the Hollister Ostomy Care Learning Center.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Whether Temporary or Permanent UOAA information and Support can help you Succeed in Life with an Ostomy.

By Ed Pfueller, UOAA

March is Colorectal Cancer Awareness Month. Colorectal cancer often has no warning signs or symptoms, and it affects more than 140,000 men and women each year. It is largely preventable with screening and treatable if caught early.

What can you do? Congress has introduced a bill Removing Barriers to Colorectal Cancer Screening Act (S668/H.R.1570). This act would fix a problem in Medicare that is a major deterrent to senior citizens getting screened. Currently, Medicare covers screening colonoscopies at no cost to the patient, but if polyps are removed during the screening procedure, beneficiaries are hit with unexpected costs.  Ouch!  This bill waives Medicare coinsurance requirements with respect to colorectal cancer screening tests, regardless of the code billed for a resulting diagnosis or procedure.

You can click here to help UOAA and other advocacy organizations advocate for final passage of this legislation in 2019.

You’ll also find that colorectal cancer survivors engage with United Ostomy Associations of America (UOAA) all year long.

If your cancer requires surgery you may have been told you’ll need an ostomy. In many cases, this is 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. A permanent colostomy may be required however when a disease affects the end part of the colon or rectum.

A colostomy is a surgically created opening in the abdomen in which a piece of the colon (large intestine) is brought outside the abdominal wall to create a stoma through which digested food passes into an external pouching system. A colostomy is created when a portion of the colon or rectum is removed due to a disease process such as colorectal cancer or a damaged area of the colon.

If you need lifesaving 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. You too can do this, but it is critical to connect with UOAA resources. Especially seek out one of our almost 300 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 will be a challenging time both emotionally and physically.  Ask if the hospital has an 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.

Our new ostomy patient guide is available to all who need it and is a great overview of what to expect. Our colostomy guide has even more in-depth information. 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 question medical contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

Let’s clear up a few myths right from the start and learn some 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.

Certified Wound Ostomy and Continent Nurse Diana Gallagher has outlined Tips for a Succesful Recovery After Ostomy Surgery for us that you should use as a roadmap for success.

Contrary to what it may seem from social media not everyone with an ostomy will be a candidate for a reversal operation. We also have a blog post to learn more Facts About Ostomy Reversals.

We do encourage you to read patient stories and tell your own story. People have ostomies for a wide variety of reasons and people with bowel diseases you may not have been aware of often 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.

Celebrate Colorectal Cancer Awareness Month and connect with Fight Colorectal Cancer or the Colon Cancer Alliance on how to make an impact. And even if your ostomy is temporary, remember to speak out on Ostomy Awareness Day on October 5th, donate or join our advocacy efforts, or a support group to give back to the next cancer survivor in need.

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.

By Karin, Newbieostomy

Whether you’ve been a part of the ostomy community for 20+ years or joined it yesterday, United Ostomy Associations of America’s (UOAA) National Conference is worth attending. There are two main themes that come up time and time again when talking to people about their experiences at the conference: education and friendship. You can read about the bonds that are formed at the UOAA conference in the post Ostomy Camaraderie.

Regarding education, it doesn’t matter if you just got your ostomy or you’ve had it for years, there’s always something new to learn because technology advances and our bodies change over time. If you’re like me, you’ve scoured the internet looking for answers to all your questions and have probably found quite a few answers hopefully here on ostomy.org or on my blog newbieostomy.com, but you might still have some other questions that are left unanswered.

Queue UOAA’s National Conference. Held every two years UOAA does a fabulous job of bringing in professionals to share the most up-to-date research and information. At the last conference in Irvine, California they brought in doctors, surgeons, WOC nurses, nurses who also have an ostomy, a geneticist, a pharmacist, a psychologist, scientists, a dietician, TSA officials, and people with inspiring stories, and probably others that I’ve missed – all who are happy to answer your specific questions and share their knowledge. That’s quite a toolbox for us ostomates to have all in one place! Here is a tentative program of what to expect at the upcoming conference August 6-10, 2019 in Philadelphia, PA.

Conference attendees speaking directly to TSA agents about traveling with an ostomy.

This year there are even suggested sessions and reserved meeting space for people with similarities. There is a Young Adult Track (Discount if 25 and under), Pediatrics Track and a Caregivers Track, so feel free to bring your family or partner along as well.

As a first-timer it was great, so much info.” – Eric, first-timer

I lean toward the studious side, so I brought a notepad and paper to every session I attended to help me soak up and remember as much knowledge as possible. In addition to (or in lieu of) taking notes during sessions, I’ve taken pictures of the slides I thought were really valuable.

Don’t want to draw attention to yourself with your hefty notebook or by holding your camera up every time there’s a new slide? Some speakers might also be willing to share their powerpoint presentations with you if you reach out to them after the event, or they might let you record the sessions if you get there early enough to ask permission.

I have learned more in these few days than I have in the almost 6 years with my permanent ostomy. – Daniel, first-timer

Wow. Right?

That’s pretty powerful.

With dozens of sessions offered, it’s can be hard to choose which one to go to if a couple of them conflict with each other. Luckily, each person has their own needs and interests so it’s likely that someone you know will go to a different session from you, which gives you both an opportunity to share what you’ve learned.

You might think that the sessions are only useful to a first timer, but not so. Derek has gone to every conference and has had his ostomy for almost 20 years, yet he still chooses to attend the “Basic Colostomy” session because there’s always something to learn and the other people who attend might ask a question he hasn’t thought of. While there are many repeat (basics) sessions offered every conference, the UOAA does a great job of bringing in new speakers to talk on different subjects as well. This year UOAA is also highlighting talks that will be of interest to both the new and experienced ostomate.

Like Derek, I also found value in the sessions from this conference even though I went to a ton of sessions at my first conference in 2015. I was happy to see new sessions offered, and to be able to attend a couple sessions that had conflicted with something else I’d prioritized hearing. I went to at least one repeat session that I noticed was really similar, but even there, I felt like I gained new knowledge and perspective because my brain can only hold so much information (even if we take notes).

In addition to attending the educational sessions and exploring the ostomy product exhibit hall, there was a hospitality area open every day where you could put a pushpin in the map of the United States to show where you’d come from, ask questions of local volunteers, and talk to members of the UOAA Advocacy and Communications team. There was also a free stoma clinic where attendees could sign up for an appointment to meet with a WOC nurse to troubleshoot pouching and skin troubles. On top of that, there were great speakers at the opening and closing ceremonies, and a really fun closing night party complete with dessert, dancing, and a perfectly executed fashion show.

This year the conference is at the Philadelphia 201 Hotel in the heart of the city and there are even more social events such as a free improv comedy show and music act, a Roaring 1920s Casino Night, and plenty of free time to explore an awesome city with new friends.

The Black and White of it? Support is Everything.

By Tricia Hottenstein  stomamama.com

I recently shared an article about a little boy who was bullied so badly that after twenty-six surgeries, he decided to take his own life. It hit me so hard. I read it with tears rolling down my face, my heart hurting for his loved ones and my soul hurting for the things he must have felt. I read it after spending a long weekend in the hospital and after undergoing three of four surgeries in just two months. I read it knowing the hurt of bullying and the feeling of people looking at me with any variant of disgust when seeing or talking about my ostomy bag. I read it after writing and sharing what was basically a diary entry of overwhelming emotions. It is by no means comparable, but it made me think a lot about the strong support system around me. I know that my mindset is shaped so greatly by those handpicked few who always have my back and in the midst of this article, fresh in my own rehashed wounds, my gratitude for life and the way it all works out has increased. I can’t be certain I’d have made it through the last few months had they happened to me a year ago when I was already down and struggling. Support is everything.         

I’ve had an ex who was (and still is) really supportive and caring, and one who made me cry and feel worthless in a hospital room. I’ve also had an ex who couldn’t hide his lack of understanding or his overly dramatic gags when he saw me changing my bag. The embarrassment and disrespect was the exact reason why I decided to mention my stoma the very first time I met my boyfriend. I had since decided that anyone who was less than understanding would be an immediate no. I was afraid of dating with an ostomy, but I was no longer willing to feel like a burden or anything less than sexy. I would be okay being single and building myself back up on my own.

And then practically out of nowhere, I was on a date. I was nervous in spite of it going so well, or maybe because it was. I spent many moments of conversation wondering if they were the right moments to bring up the surgery. I speak so freely of my bag to everyone. I answer questions from coworkers, friends, family, and strangers without thinking twice. This is my bag; it saved my life! It is worth talking about. But how do I casually bring this up without awkwardly ending a date? What if his response wasn’t what I wanted it to be? Although, that’s the point, right? I’m old enough, I’ve been through enough. No more on the fence with anything. It is black and white and I’m not moving forward with any more gray.

“Tell me something about yourself that would surprise me.” To be honest, I don’t even remember if he eventually answered the question. All I know is he stared at me. This moment of oh shit in my mind as he was staring at me, half laughing, shocked to be put on the spot. So I just went for it. “I don’t have a colon!” More stares, more shock. I explained the scenario in a nutshell. The disease, the surgery, and the bag I’ve had for several years.

“Well… I guess…that’s kind of shitty, huh?” The words hung in the air before we both laughed. And in all honesty, my reaction to that response could have been a variable one depending on many factors. But really, how better to respond? Because I don’t want someone who will constantly feel sorry for me, or who will treat me any differently. Rather, I want someone who will make me laugh, who will be understanding and upbeat, and who will continue on with the conversation afterward as if it is no big deal. Sure, there were questions to be asked, but not a single one of them seemed to really matter. And there it was, in black and white and bar lights: this glimmer of hope.

As it would turn out, it couldn’t have come at a better time. A few short months later, I was back in hospital gowns and waiting rooms. And not once did he flinch. Not when I delivered awful news, not while he sat next to me in pre-op, not when my bag leaked in the middle of the night or I got frustrated and had tears running down my face. The reality is, most of the time I didn’t even have time to process things before he was reassuring me I’d be okay and distracting me with nonstop laughter.

When I’m in the trenches, when I’m alone, when I think too much, it is easy to go to a place of overwhelming emotions. I have spent more than half of my life with this disease, and surgery went so well that I thought the rest of my life would be smooth sailing. I was finally meeting people who had never known me as sick. It sounds so irrelevant, but it is a huge deal. I remember several years ago when a family member introduced me as “the sick one.” It was intended to be harmless. Intended simply as a way for their friend to put a face to the person they had obviously spoken of. The person undergoing IV therapy, taking twenty-some pills a day, piling up medical debt, and seeing the best physicians while still unable to leave the house most days. It cut through me and it scarred deep. But post-op, there was this moment in life where that was no longer me. Now I was strong. I was an adventurer. I was healthy.

The frustration when that all came crashing down was audible. Suddenly I was right back down to the some of the lowest points in my life. I was again “the sick one.” Somehow even when things had been slowly going downhill, I was blinded enough by the highs to be shocked when I was back to square one. I was angry. I felt sorry for myself and felt alone despite the people around me. I started to prepare myself again for the life full of battles, ready to sink back to that person who laid in the fetal position on the sofa, unable to eat or move or laugh from deep within my belly. I just kept thinking, over and over, that this is my life. I had a whole other vision for it after my ostomy surgery, but this person, right here, in a hospital room getting bad news? This is my life.

Until the person next to me, the person who responded to the news of my ostomy when we first met with a poop joke, responded with another poop joke. The kind that made me laugh so hard that all the ugly tears shook off my face. And as he wiped the remnants of them away, he reassured me. With a few simple words, he reminded me of my actual life. Reality. Yes, I am the sick one. But I’m also the healthy one. In black and white, that is my life. Some days I will be an adventurer. I’ll feel healthy, I’ll laugh, and I’ll enjoy the smooth sailing. And some days I will be sick. I’ll be a warrior. I’ll look for hope and rely on others. And their support will be everything.

 

UOAA Resources:

Emotional Concerns

Sexuality

Living with an Ostomy

 

Learn how to spot peristomal skin irritation and damage.

 

After your ostomy surgery, your healthcare team likely taught you how to care for your peristomal skin and what it should look like when it is healthy. Ideally, it should be intact without irritation, rash, or redness. The skin around your stoma should look just like the skin on the other side of your abdomen, or anywhere else on your body, free of redness, irritation, or damage. Healthy skin should be the rule, not the exception.

However, if your peristomal skin is irritated or damaged, there may be some signs of a peristomal skin complication (PSC), such as:

  1. Discomfort, itching, soreness, or even pain around the stoma
  2. Recurrent leakage under your pouching system or skin barrier
  3. Excessive bleeding of your stoma – it’s normal for your stoma to slightly bleed after you wash it, but the bleeding should resolve quickly
  4. A bulge in the skin around your stoma
  5. Skin color changes from normal pink or red to pale, bluish purple, or black
  6. A rash around the stoma that is red, or red with bumps – this may be due to a skin infection or sensitivity, or even leakage
  7. Wart-like, pimple-like or blister-like bumps under the skin barrier – this type of irritation can happen any time, even if you’ve used the same product for months or years
  8. Any type of wound or scratch on the peristomal skin

Peristomal Skin Complications — Potential causes and what to do

Irritated and damaged peristomal skin can occur for a variety of reasons. It can be caused by anything from a poor-fitting pouching system, to frequent skin barrier changes, to an allergic reaction to anything that contacts the skin, such as soaps or products used to prepare the peristomal skin. Some studies report up to 75 percent of people with an ostomy experience a PSC.* Although it is a common issue, it should not be ignored.

If you experience any signs of a PSC, contact your stoma care nurse. You should work with your healthcare team to determine the exact cause and the appropriate solution.

For more information on maintaining healthy skin and other topics, click here to visit the Hollister Ostomy Learning Center.

 

* Rapp CG, L Richbourg, JM Thorne. Difficulties Experienced by the Ostomate After Hospital Discharge. JWOCN. 2007;34(1):70-79.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

I am Alan Thompson, a New Jersey native who moved with my wife, Vita, to Florida in 2015. I recently joined the Daytona area chapter of the United Ostomy Associations of America; however, I am not a new ostomate, I had ileostomy surgery when I was 30 years old in 1986. I suffered from ulcerative colitis for about four years prior to the surgery and thankfully I never needed serious follow-up medical attention. I view the ileostomy surgery as a positive event in my life that ultimately motivated me to have a successful career in Federal Law Enforcement.

My first symptoms of ulcerative colitis occurred in 1982, when I was a clerk for the Postal Service in Phillipsburg, NJ. The symptoms significantly worsened in 1984 resulting in hospital stays that included hyperalimentation. I was even initially quarantined at a rural New Jersey hospital. The local gastroenterologist did not have a handle on my illness, but thankfully my Mom shared with me an advertisement in Parade magazine that described ulcerative colitis (UC) which matched all my symptoms. I was given Prednisone and Azulfidine to manage the UC. At first the medications worked but ultimately the UC symptoms kept coming back at shorter and more intense intervals. By 1986, I realized that surgery was my only hope. We had two small children and I had nearly exhausted my sick leave with the Postal Service. Vita and my parents, Madeline and Jessie Thompson, were very supportive through this entire ordeal.

Alan Thompson with wife Vita on Capitol Hill in 2017.

I met with Dr. Robert Riether in Allentown, PA. We first tried ileoanal anastomosis surgery in May 1986 at Lehigh Valley Hospital. But by September my condition worsened, and it became clear that an ileostomy was needed. During this tumultuous time, Vita became pregnant with our third child. My surgery was performed on September 19, 1986. I am eternally thankful for Dr. Riether who unfortunately, passed away at a young age in 2006.

Overcoming UC motivated me to reach new heights with my career. I eventually became Superintendent of Postal Operations in Flemington, New Jersey. In 1989, I took a test to become a Postal Inspector, which is a federal law enforcement position that enforces criminal laws related to the U.S. Mail. I passed the test and started the arduous process to become an Inspector which included an intense assessment interview, background checks and a medical physical. At the time, the maximum age for starting a career as a Federal law enforcement agent was 35, which meant that I needed to complete this process and commence a three to four-month training regimen in Potomac, Maryland by March of 1991. Unfortunately, due to budget reasons the training classes were suspended and I “aged out”.
In 1992, the maximum age for commencing a Federal Law Enforcement changed to 37 years old. I now had up to March 1993 to get into a Postal Inspector class. I had another round of background checks and another physical. The local postal doctors knew I had an ileostomy but found me to be in good shape to become an Inspector. I made it! I was slated to start at the Inspection Service Training Academy three days before my 37th Birthday.

To celebrate my potential advancement and spend time together as a family before I left, Vita and I took the kids on a long ride to the Camden, NJ Aquarium on February 26th. We travelled through a snowstorm and came back to a message on the answering machine. A doctor in Washington DC rejected my application because of my ileostomy. I was devastated. I made several calls and wrote letters to the postal hierarchy with little or no response from them. I heard that other Federal Law Enforcement Agency doctors were consulted, and no one had been known to have previously entered Federal Law Enforcement training with an ostomy. Fortunately, I still had my job as a Postal Supervisor.

Over the next several months we fought and secured another physical from a gastroenterologist with Vita’s advocacy on my behalf, the doctor approved of my candidacy to become an Inspector. I believe strongly that letters that we sent to New Jersey Senators Bill Bradley and Frank Lautenberg helped my cause. Our daughter Jessica, at age 11, also wrote a letter to Congresswoman Marge Roukema urging her office to intercede. That letter really turned things around and ultimately, I was granted an exception to the Federal law enforcement maximum age requirement and I was accepted in the next training class that commenced in September of 1993.

Under the heading of things happen for a reason, I learned after my initial rejection that my Mom had been diagnosed with colon cancer in February of 1993. She and my Dad didn’t want to tell me because I was headed to the training academy. My Mom ended up with a colostomy which, with my Dad’s hands on help, she lived with until she passed away in 2006. She always said that my having an ileostomy gave her the courage to handle a colostomy. Obviously, Mom inspired me too!

I passed the training academy and commenced a career in New York City as a Postal Inspector. My assignment was mail theft investigations which required surveillances during all times of the day. Firearms and Defensive Tactics training and annual physicals were also requirements. I also participated in the initial Anthrax investigation and assisted the Secret Service on a protection detail for President Clinton. Having an ileostomy certainly presented some difficulties but it never interfered in my daily activities that included investigating and arresting thieves and testifying on behalf of my agency. Ultimately, I became a Team Leader in New Jersey. In 2006 I transferred over to the USPS Office of Inspector General and continued investigating and supervising mail theft investigations in New Jersey and New York.

At the time of my mandatory retirement in September 2013, I was an Assistant Special Agent in Charge for the last five and a half years of my career. All told I had 33 years with the Postal Service. At no point after I was accepted into the training class in September 1993 until my retirement 20 years later did anyone mention my ileostomy. I am sure that upper management must have known about it, but I let my work speak for the opportunity that was given to me in 1993.

One tip that I can offer is that I quickly recognized foods to avoid and realized early on that weight control was essential in managing my ileostomy. I currently work out at least six days a week riding a bike and doing some weight training. I recently took up golf with low expectations and I love meeting those low expectations. Now as a retiree in Florida, I am grateful that I did not accept the rejection and instead pushed and advocated for the opportunity to demonstrate that my ostomy would not interfere with a career in law enforcement.