Colonel Justin Blum with Introduction by retired Navy Veteran Douglas R. Stocks

I’ve known Colonel Justin Blum for almost ten years and have learned much of his story over those years. For UOAA’s observance of Veterans Day, I asked Justin to share his story in greater depth. It is typical for us to remember our Veterans as heroes, but we don’t think or even imagine that they also may have been through a life-altering illness or traumatic event resulting in an ostomy. My wife Joanna (an ostomate) and I had the opportunity to spend an evening with Justin and his wife Leah after the Durham Run for Resilience 5K this past October. I was reminded that evening of the hero that Justin truly is, and felt it was time that others knew the story of this humble and well-respected man.

In 1993, when Justin was a Major on active duty in the US Army, he underwent surgery for an ileostomy due to ulcerative colitis (UC) which had progressed to colon cancer. Justin’s ostomy did not slow him down and he became one of the most respected officers in the state of South Carolina and the only member of the Army Junior Reserve Officer Training Corps (JROTC) cadre with an ostomy.  Justin has had a highly successful career and life of public service. Justin has faced the gamut of living with a chronic illness, to receiving a devastating diagnosis, to ostomy surgery, to survival and finally triumph.

Here is his story:

In the Fall of 1971, I was a freshman at Morris Harvey College in Charleston, West Virginia. I was feeling the stress of being away from home for the first time in my life and of getting adjusted to college life.  I began noticing blood in the toilet after every bowel movement. I told my parents, who took me to a gastroenterologist during my Thanksgiving vacation at home. The gastroenterologist performed a sigmoidoscopy and determined that I had proctitis, an inflammation of the rectum and anus.

I transferred to Rider University in Trenton, NJ, for my second freshman semester to be closer to home, a decision made easier by the fact that Rider had an excellent ROTC program. I suffered with the proctitis and colitis for the next four years with only a prescription for the anti-inflammatory drug Azulfidine to combat the disease. In June of 1975, I underwent my physical exam at Fort Dix, NJ, to go into active duty in the Army. In the course of the physical, the Army doctor performed a rectal exam, and asked, “Do you know what you have?”  I acknowledged that I had colitis. In one of those strange twists of fate, my passion for serving the Army outweighed the colitis so the examining doctor wrote “Fit for Duty”.

For the next twenty years I hid my ulcerative colitis from the Army.  On days that I had attacks, I would explain that I was feeling bad due to having had too much scotch the night before.  Stationed in South Korea in 1976/1977, all too often upon returning to the camp motor pool after patrolling along the DMZ, I would have such severe diarrhea that I could not make it to the latrine and instead would jump into the nearest garbage bin since it was the closest “facility” I could find. I spent the next 13 years seeing civilian gastroenterologists for the colitis and who continued to prescribe Azulfidine. Finally, in 1990, my colitis was so bad I sought help at Eisenhower Army Hospital at Fort Gordan, Georgia where I began seeing Major Armstrong, a gastroenterologist, who informed me that due to my heath condition, resulting from severe flare-ups of UC, he strongly recommended surgery for an ileostomy.  My reaction, not unusual I am sure for people receiving this news, was an immediate, “No! Unless I have one foot in the grave with my back against the wall, I refuse to have this surgery resulting in my living with an ostomy bag!” This was twenty years after my first diagnosis of UC in November 1971. However, just a few years later after a colonoscopy, Major Armstrong told me that I needed ostomy surgery as soon as possible.

On February 28, 1993, I had surgery to remove my entire colon due to UC, which had advanced to colon cancer, and I was left with an ileostomy. As was not uncommon in those days, and even sadly still happens today, I had only one session with the ostomy nurse on how to manage my ostomy.  The day after surgery, I developed a leak in my appliance and called for the nurse, but no one responded.  I looked at myself in the latrine mirror with my ostomy bag hanging down, and I thought I looked like the Elephant Man.  After 10 days I was discharged but did not have access to an ostomy nurse or assistance of any kind except for follow up appointments three hours away at Eisenhower Hospital. I wanted to continue to serve on active duty, so I put my mind toward getting in the best physical condition possible. I started walking 9 miles a day, passed my physical fitness test, and was able to stay on active duty. In 1995 I was promoted to Lieutenant Colonel and in 1996 retired from active duty and transferred to reserve status, continuing to work for the US Army as a high school JROTC Instructor.

Life as an ostomate was fine except that I was experiencing pain from irritation of the skin around my stoma and I did not know of any ostomy nurses in the local hospitals and I didn’t know where to turn for help except for the still fledgling Internet of 1996. I was able to find a Crohn’s/Colitis chatroom on AOL (America Online). In that chatroom I was able to talk with numerous people who had either an ileostomy or a colostomy. On one occasion, an experienced ostomate was able to talk me through the steps to alleviate an intestinal blockage saving me a trip to the emergency room.  I was able to find an ostomy support group at the local hospital, but because they met at 10:00 AM and I was working an hour away, I was unable to attend their meetings. Despite all I learned from online resources I was still plagued with skin irritation around my stoma site which continued for the next 10 plus years.

Life took a turn for the better when in 2010, I received a letter from the nurse who ran the local ostomy support group, which talked about (the now former) Great Comebacks Program; a national honor program started by ostomate and former point kicker for the San Diego Chargers, Rolf Benirschke. This program recognized people who had lived an exemplary and inspiring life while living with an ostomy.  In 2011 I was the recipient of the Tony Snow Public Service Award, a subgroup of the Great Comebacks Program which emphasizes those in uniform living with an ostomy.

However, it was not the award that changed things for me, it was my ongoing communication with the ostomy nurses that I met through this program who eventually solved the problem of the skin irritation and pain that I had struggled with for so many years.

I have accomplished more in my life as an ostomate as a result of the care I have been able to obtain since my story was brought to the national level. If not for my quality of life-improving dramatically as a result of this assistance, these accomplishments would not have become a reality.  I owe so much to three WOC nurses: Donna Sellers, Joanna Burgess, and Joy Hooper. I met them through the Great Comebacks program, and they have always offered their help readily.  I have now been free from pain for the past nine years.

There are many who do not have the same easy access to professionals that I have had. I am very fortunate! That is why I believe everyone should seek out or become involved with a community of ostomates either through an online support group or hospital-based support group if possible. All ostomates should help other ostomates achieve the quality of life made possible by their life-saving surgery. Having UC and then colon cancer at age 40 meant years of pain and discomfort in my life. Ostomy surgery gave me a new life. Before I retired from teaching, I used my experience with my ostomy to motivate my JROTC cadets, inspiring them to never give up on anything and reminding them they can accomplish anything they set their mind to.  I no longer see myself as the Elephant Man, but as a man with a beautiful wife, supportive children and two amazing grandchildren.  Life is good!

The UOAA thanks you for your service Colonel Justin Blum and honors your accomplishments!

  • 1995 – Promoted to Lieutenant Colonel
  • 1996 – Retired from active duty; continued to work for the US Army as an Army JROTC instructor in the United States Army Cadet Command.
  • 2003-Named the United States Army JROTC Senior Instructor of the year
  • 2009 – Promoted to Colonel, in the South Carolina State Guard
  • 2010- Named Volunteer of the Year for the State of South Carolina
  • 2011- Named US Army JROTC Senior Instructor of the Year for the second time.
  • 2011 – Named the Tony Snow recipient for Public Service
  • 2019 – Lawson R. McElroy Award for Engaged Learning

 

How to Keep the Skin Around Your Stoma Healthy

 

 

Keeping the skin around your stoma, or peristomal skin, healthy is important. You can steer clear of many complications by following these simple suggestions from:

Bath and shower tips:

  • You can bathe and shower just as you did before surgery, with your pouch on or off—the choice is up to you.
  • Because soap residue can cause your skin barrier to lift, avoid oil-based and moisturizing soaps.
  • Soap and water will not flow into the stoma and cannot damage it.

Choose a well-fitted ostomy barrier:

  • To help keep the skin around your stoma healthy, it is important that your skin barrier fits properly. Choose a well-fitting pouching system to help prevent irritating stoma contents from coming into contact with your skin.
  • Your ostomy nurse can teach you how to use a measuring guide to determine the size of your stoma and select a cut-to-fit, pre-cut ormoldable barrier.
  • Your stoma size will change up to 10 weeks after surgery, so you will need to measure it periodically.
  • Changes to the abdomen caused by pregnancy, exercise, weight gain/loss or certain medical conditions may also require a new pouching system and/or size.

Changing your pouching system:

  • Make an easy-to-follow schedule for your pouching system. This will ensure your skin barrier is changed before the adhesive has eroded, reducing the chance of urine or feces coming into contact with your skin. Your schedule should be personalized based on your system type and the advice of your doctor or ostomy nurse.
  • At each skin barrier and pouch change, make a habit of looking at the skin around your stoma. Redness, swelling or a rash are signs of irritation. If you see any of these, or other signs of irritation, notify your healthcare provider.
  • Never rip or tear off your skin barrier. Instead, remove the skin barrier gently by beginning with one corner of the barrier and slowly pulling off the remaining adhesive. Adhesive releaser spray and remover wipes can make pouch changes easier and ensure clean skin, ready for your next skin barrier.
  • Make sure your peristomal skin is completely dry before replacing your pouch and skin barrier. Dry skin ensures a good adhesive seal and helps reduce the risk of fungal infection.
  • A skincare routine including skin barrier foam, spray or wipes can help ensure healthy, comfortable peristomal skin for years to come.
  • In hot, humid locations, consider using a pouch with a fabric backing. This will keep the pouch from sticking to your skin and causing skin irritation.

For more information click here.

 

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. 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.

“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

National Ostomy Awareness Day is celebrated this year in the US on Saturday, October 5, 2019. At Hollister Incorporated, we are proud to stand with the broader ostomy community to show how we are #AllinforOstomy. We invite everyone to join together in spreading awareness or engaging in activities that can impact the day-to-day lives of people living with ostomies and their caregivers.

Participate in a Run for Resilience Ostomy 5K Event!

For some, the best way to celebrate and support ostomy awareness is to get out and enjoy the day, even better to do so together with the people we care about. In that spirit, we celebrate Ostomy Awareness Day again this year by supporting United Ostomy Associations of America (UOAA) as the exclusive Diamond Sponsor of the annual Run for Resilience Ostomy 5K events. The events help increase awareness about ostomy and continent diversion surgery and encourage positive dialogue. Bring family and friends with you to participate in one of these fun events nationwide. Many feature kids’ activities, a DJ, a division for people with ostomies, and awards. Visit ostomy5k.org to find a run near you. While you’re there, stop by the Hollister booth and say hello!

If you can’t make it to one of the live events, you can still participate by registering for a Virtual Walk, Run, or Roll at a location near you. Even a treadmill counts! This year Hollister Associates will participate in a virtual event near our Hollister Incorporated headquarters in Illinois, and at our distribution center in Stuarts Draft, Virginia.

Gearing up to participate in one of these events? Get in the mood with the All in for Ostomy playlist on Spotify.

Show off your Stoma Sticker on Ostomy Awareness Day or Any Day!

By wearing a “stoma” where people can see it, you can start a conversation, raise awareness, and show support for the ostomy community on Ostomy Awareness Day and every day. Place the sticker over your clothes on the lower right or left side between your navel and hip, where ostomies are typically located. Then, take a photo or video and share it on social media with the hashtags #AllinforOstomy and #OstomyAwareness. Because any day is a good day to support and celebrate ostomy awareness, Stoma Stickers are available for order year round! Visit stomasticker.com to order a free educational Stoma Sticker, shipped anywhere in the US.

Visit www.hollister.com/ostomyawareness to learn more!

 

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

It’s up to you. Will ostomy awareness, support and education stay in the shadows this year or touch lives and impact those in your community? Will you celebrate the resilience of people living with an ostomy and fight for those still in need?

If you want this shirt simply sign-up for any walk/run or the virtual option. Must order by Sep. 13 to get your size.

Ostomies are Life-Savers. It’s that simple, and that’s both the Ostomy Awareness Day theme and what will be emblazoned on the t-shirts of those gathering at the Run for Resilience Ostomy 5k awareness events September 28 and October 5 and 12, 2019.

You don’t have to run, or even walk a step, to support these charity events. It’s easy. If you’re not able to come out for an event (or simply like to sleep in) ­– donate to an event near you, or the worldwide virtual 5k event. You can also check out all the other ways to make a difference this Ostomy Awareness Day, Saturday, October 5, 2019.

Consider supporting that person who just had ostomy surgery in the past year and is seeking the confidence to get out in the world again. Attend or donate to the event of a double ostomate like Roxanne Camp, who despite countless surgeries, is still bringing ostomy awareness with a smile to her community in Arizona in the form of an Ostomy 5k fun run and a picnic open to all.

 

Phil Moyle in Spokane, WA started a fundraiser for this year’s Ostomy5k in Boise.

Start a fundraiser like Phil Moyle of the Inland Northwest Ostomy Support Groups and let your friends and family know why this cause is so close to your heart. Phil was touched by the passion of the Herrett family in Boise. They started a run for their two children who have ostomies in the hope they’ll be able to live in a world that will embrace their differences.

All around the country, those who are seeking empowerment over their health will be gathering with friends and family to walk, run or roll at an event near them or anywhere they want with the virtual 5k option. Most of the attendees typically do not have an ostomy, yet will be out on the streets to support you.  If you’ve never run before– consider this as motivation. The events are all beautiful park locations. Some of the event locations are simple fun runs while others are on a timed and certified courses that attract a handful of serious competitors. Check out www.ostomy5k.org for all the details.

Gather friends, your support group, co-workers or family and host a Virtual Ostomy 5k walk event and fundraiser wherever you want. We’ll send you t-shirts and race bibs and you can send us photos!

Consider starting a couch to 5k group with some friends (It’s easy with an app like this.). Walk with your support group, friends or family anywhere you want by signing up for the worldwide virtual ostomy 5k. We’ll mail you out a t-shirt and a race bib so you can be a real part of this national movement. If you don’t want a shirt, the event is free! 

You could plan on taking a fun trip to Nashville and meet fashion designer and survivor Manny Cuevas who is helping to organize the event there and is hand sewing ostomy pouch covers for top ostomates that complete the run. Run for those who are still battling illness and can’t host a run this year like Stephanie Urzi in New Jersey.

Lucky competitors may get an exclusive pouch cover from designer Manny Cuevas.

Support and donate to events hosted by dedicated ostomy nurses who have volunteered their time for you, such as Lara Leininger and Angela Richardson in North Carolina, Gina Day in Pennsylvania, Misty Edwards in Alabama, Deborah Nelson in Tennessee, and Amber Lords and Jessica Blakeslee in Idaho. They work all day with patients but still want to do more to create awareness in their own communities, and to benefit all people living with an ostomy in the United States.

UOAA’s national advocacy, trusted resources, and support groups nationwide help turn around countless lives. Event proceeds benefit UOAA as this is our major fundraiser.

Thanks to our national sponsors who help offset the costs of the events and believe in this mission. They volunteer, have reps, products and information on hand. Exclusive Diamond Sponsor Hollister will have employees in Stuarts Draft, VA that will be running in solidarity. Gold Sponsor Coloplast’s Vincent Faiola, who is also a support group leader, is gathering the ostomy community for an event in Vancouver, WA. Silver Sponsors Byram Healthcare and Colo-Majic are excited to connect with you and support the cause. Bronze Sponsor Safe-n-Simple’s Michele Pitylack and Holly Loos are hosting an event in Michigan and promoting the event nationwide. Bronze sponsors ConvaTec will also be on hand at the events to answer your questions and new sponsor Osto-EZ-Vent is proud to be a part of this event. And thanks so much to our local sponsors who do so much for the community spirit of these events.

Walk or roll because you can. Run if that is your goal. Donate or fundraise if you have the means. Or volunteer at an event near you and cheer on others. We’re sure friends and family have encouraged you to support a charity close to their heart before ­– now may be the time to ask a favor in return. Ostomy awareness simply saves lives, and it needs to start with us, the time is now. Show the world we’re alive and why they should care.

Click Here to Register at an Event Near You

Click Here to Donate or Start a Fundraiser

Click Here for a T-shirt and a Virtual Walk/Run you can do Anywhere

Working with Takeda to Educate Others about Gastrointestinal Disorders

 

Ten years ago, I would have introduced myself as Gwen. Today, I am Gwendolyn, a version of me that’s been to hell and back with Short Bowel Syndrome, or SBS. A me who’s come to know a strength she had no idea she possessed. Gwen, before SBS, was career-driven, rushing through life. Everything for me was fast-paced—work, home, and family. But that was ten years ago, before SBS barged in and reshaped my entire life, stripping me of my identity. With August being SBS Awareness Month, I am sharing my story about living with SBS and an ostomy, as a way to drive awareness of this disease among others like me who are impacted.

I’m your typical New Yorker. What comes up, comes out. But not when it comes to SBS. It’s not the prettiest of conditions, is it? Intimate details aside, no one really understands what we’re going through. When I was diagnosed, I felt so isolated. To this day, I still have flashbacks of being in that hospital bed, wondering why. I wasn’t comfortable discussing what I was going through. No one deserves to feel alone with SBS. We are not hopeless. I don’t believe that. I’d like to believe that what I’ve been through is for a reason. Maybe sharing my story is my reason—to help people see that SBS can be a beginning, and not an end.

I entered the workforce shortly after completing high school. In 1991, I began working in construction. The minute I walked onto a job site, I felt at home. I started out as a temporary receptionist and after various projects, I worked my way up to office manager. I worked in construction for over 20 years. Come 2009, I was the administrative manager for the largest construction project in the country. I was happily married, living in the Atlanta suburbs, and enjoying any time I got to spend with my precious granddaughter. Life was good. I really felt like I had arrived. In fact, I was so focused on my job and being everything to everybody that I wasn’t giving the pain I’d been experiencing the attention it deserved.

By then, I’d undergone three separate abdominal surgeries: one to remove my appendix at age four, another to address a small bowel fistula at age 27, and finally a hysterectomy at age 40. For years, I’d been experiencing intense abdominal pain, which I’d alleviate with a pain reliever here and a pain reliever there. Until, one day, the pain relievers stopped doing the trick, and I’d just about had enough. I decided to finally seek medical attention. Turns out, I had quite a bit of scar tissue and adhesions leftover from my past surgeries. After talking it over with my doctors, I decided to go ahead with surgery to clean it up.

As far as I knew, the surgery was a success. I was released from the hospital on my 54th birthday. Two weeks later, my daughter came over and found me, incoherent, with a greenish fluid seeping through my surgical dressing; my temperature had spiked to 104 degrees. I was rushed to the hospital and immediately sent into surgery. I had developed a bad sepsis infection as a result of multiple fistulas found within my small bowels. I underwent two additional surgeries, which required the removal of portions of my small bowel, and was placed in a medical coma. While in the coma, my husband made the decision to have an air ambulance fly me to a larger facility where I was immediately rushed into surgery—again. This surgery would end up costing me additional portions of my small bowel and my colon as well.

I remember waking up days later and having no idea what had happened. So where am I? At a different facility, and in critical condition, so bad that they’d previously advised my daughter to say her goodbyes. My abdomen was completely opened and connected to wall suction. I also was left with an ileostomy. I’d have to now receive nutrition via total parenteral nutrition (TPN) twenty-four hours a day, seven days a week. At no point did anyone say a thing about SBS.

I was admitted in May of 2009. I ended up going home in April of 2010. My body couldn’t seem to hold off the ongoing infections. It seemed that everything that could possibly go wrong did. Let me tell you, I cried a lot. I couldn’t help but think, Why me? What had I done to deserve this?

My husband came to visit every day after work and stayed with me in the hospital on the weekends. One day he came in and I was having one of my uncontrollable crying spells. He lost his temper. He said to me, “What the hell are you doing? You are not doing anything to help yourself!” He spoke the truth; no sugarcoating it. I got angry. But you know what? I needed to get angry. I needed to feel something other than self-pity. I stayed angry for a long time after that day—not at him, not at the doctors, but at myself for not doing my due diligence. It was hard for me to admit that. As an administrator, I was used to surveying contracts, invoices, as well as familiarizing myself with the details. Yet when it came to my health and being my own advocate, I felt I had failed. But that didn’t mean I couldn’t start now. My husband helped me see that. He got me out of bed every single day to walk. He would wrap me up in blankets, place me in a wheelchair, and take me outside in the dead of winter in order for the sun to hit my face.

I managed to make it back to see my original gastroenterologist in April 2010 after I was discharged from the acute care facility, who for the first time diagnosed me with Short Bowel Syndrome (SBS), or what he called “short gut.” After my diagnosis with SBS, it took me a long time to come to terms with it; no one told me how different my life could be. I had no choice but to do a little soul searching, and it was there I met Gwendolyn. Gwendolyn wasn’t scared; she wanted some answers. Gwendolyn knew that, in terms of healthcare, there had to be more options out there.

After I was discharged, I returned to the hospital in May of 2010 in order to reverse the ileostomy and close the opening in my abdomen. I prayed that, afterwards, things would go back to normal. Boy, was I wrong. I had lost 75 percent of my small bowel and 25 percent of my colon.

I was tired of relying on TPN. By that point my doctor and I reduced the amount of time for my infusion requirements at home. There were nights I couldn’t bring myself to connect to TPN, and my husband had to do it. I got tired of wearing the backpack if I went out, and people asking, “Are you going camping?”

My infectious disease doctor recommended a gastroenterologist he thought would be a good fit. He was right. At my first appointment with her, she listened to my case and evaluated treatment options that would help me reach my treatment goals.

To help monitor my health and stay where I want to be medically, I keep a daily log, which includes voids, bowel movements, when I take my medication, daily activities, and what foods I’ve eaten. I even log my blood pressure and temperature. I see my gastroenterologist every two months. A log takes the burden of remembering off my shoulders, and all of my doctors seem to appreciate the effort. I have an amazing medical team. My gastroenterologist. My infectious disease doctor. My therapist. My nephrologist. And my primary care physician. But my surgeon, he was a gift. The last time I saw him was in April of 2017. I had been his patient for eight years. Before I left his office, he gave me some of the best advice to date; he said, “It’s time to go ahead and live your life.” I can hardly talk about that man without crying. He saved my life, in more ways than one.

The reality is, I have good days and bad days. On my good days, I spend that time making cupcakes for my granddaughter. I make a mean cupcake. I do laundry. I go out with friends. That’s right—I leave my house! I don’t go anywhere without my little toolkit. Inside my purse, I’ve got baby wipes, disinfectant spray, odor eliminator, rubber gloves, and hand sanitizer. But you know what? It works for me.

While I don’t miss some of the old Gwen, I do miss her tenacity. So I’m working on getting a little of the old me back—saying “yes” to opportunities and working on relationships with others.

When I was diagnosed with SBS, I wish that I had done more research to learn what the future could be like living with SBS. I think that would have saved me a lot of pain and heartache. So I’m going to tell you what I wish someone would have told me. If you’re not comfortable with where you are, do something to get where you want to be. If you feel like something is wrong, do something about it.

To learn more about Short Bowel Syndrome (SBS), please visit shortbowelsyndrome.com. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

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

Many people with an ostomy find that once their stoma has settled and they are in a normal routine, they are able to live their life with few ostomy related issues. However, as you are adjusting to life with a stoma, you may experience some problems that are quite common. We have put together a list of some common ostomy related problems and solutions so you can be well prepared if and when they occur.

Many ostomates continue to live with stoma issues and problems unaware that there are solutions available to them. Learning how to care for your stoma and understanding these common problems will help you to find normalcy and routine after your surgery. Access to this information will help you to take charge of your life and increase your confidence.

Before we get into the common problems and solutions, it might be helpful to mention proper cleaning and application. With proper care of your stoma and the skin around your stoma you may reduce the risk of the below problems. Proper care begins with proper application. Make sure your barrier hole fits tightly around your stoma, and that the skin is clean and dry for application. When removing your barrier, it is important to lift it gently off of your skin while using your other hand to press down on your skin. Ripping the adhesive off quickly can cause redness and irritation that can lead to other problems. To clean your stoma and the area around it, use a soft cloth or towel and warm water. Be gentle when cleaning, as aggressive rubbing or wiping can irritate the skin. It is not necessary to use soap, as soaps can leave residue and irritate the skin. When changing your pouching system, it can be helpful to use a small hand-held mirror to see all around it. If there is leakage, use the mirror to check all areas of your barrier and stoma for gaps and creases. Once you’ve identified the problem area, it will be easier to address.

Leakage

Two of the main factors of leakage problems are: how you prepare your skin before you apply your barrier, and your barrier size. You should make sure to clean and dry your skin completely before applying a new pouching system. If you are having trouble getting the area dry, an absorbing powder might be a good solution for you. If your pouch gets too heavy and tends to pull away from your skin, or if your barrier does not fit correctly, a protective seal between your stoma and the barrier can prevent leakage and seal the pouching system.

Skin Problems

The skin that surrounds your stoma is called peristomal skin­—it should be smooth and healthy and look like the rest of your skin. If it is red or irritated, you should address the problem immediately. If you have problems with adhesive residue or are unable to get the area completely clean before application, you may want to try to use an adhesive remover.

Odor

New sound and smells coming from your pouching system can be embarrassing and induce anxiety. Many new pouching systems have filters to neutralize the odors caused by gasses in your pouch. What you eat can have an effect on gasses you produce. It is recommended to avoid carbonated beverages and limit high-fiber foods. If the filter in your pouch gets blocked, you may experience ballooning. Ballooning happens when air from your stoma cannot escape the bag and it fills up like a balloon. Depending on the type of system you are using, you may want to release air from it throughout the day. If the odor is strong when you are changing your pouch, you may want to try a lubricating deodorant which can help mask, the smells during a pouch change. Simply place 6-10 drops into the pouch when you change and empty it and spread it around inside the pouch by rubbing the inner sides together, avoiding the filter. This helps the output to make its way more easily to the bottom of the pouch.

Should you need more assistance dealing with a problem you are having with your ostomy, consult your healthcare professional. For more assistance and personalized support, check out Coloplast® Care, which is an ongoing comprehensive support program that gives people with an ostomy support throughout their life.

Editor’s note: This 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.

Walk Through that Door and You Might Surprise Yourself

 

By Ellyn Mantell

There are support groups for many issues but until I, myself, was in need, I never gave much thought to what they can provide. We have seen representations on television and in the movies, and they seem to have merit, but I have learned that they can be a lifesaver, or at the very least, a way to begin to live a life.

During all of the over 20 years that I suffered from constant bowel obstructions and abdominal surgeries, I longed for others to tell me “it would be alright.” But there were no “others” to be found…nobody seemed to have what I had, and therefore, I could never ask what I could do, what did he/she do to live a fuller life? And then I had my ileostomy, and everything changed. After my 23rd abdominal surgery,  something happened that hadn’t happened before…I now had the name of something that could actually garner support, and I took to it like a duck to water!

My ostomy nurse, Angela Natale-Ryan invited me to the Union County Ostomy Support Group in New Jersey, and I was quick to take advantage. Little did I know that, fast-forward, I would find a home for myself, become president for the past five years, and go on to start other support groups. But that is only one piece of the wonderful puzzle I find myself putting together. As president, my name is given to those in need who call the American Cancer Society, or United Ostomy Association of America, or even the local hospitals. The connection I have to so many reaches into every interaction I have, since each new encounter teaches me something.

As much as we are all individuals, new members are frightened and worried, hesitant to walk through a new door, and filled with misconceptions. Letting someone know “it will be alright” because we have all been through it, is invaluable. And most importantly, we welcome each new member of the group with open arms.

At the beginning of our meetings, we go around the (ever-growing) group and say our names and type of ostomy we have, and if we are new ostomates. Additionally, I ask if anyone has any issues that they would like discussed, and we will circle back to those after everyone has a chance to introduce themselves. Our Wound Ostomy Continence nurses address the medical concerns, and we discuss lifestyle concerns with each other.

I have garnered a wealth of knowledge about the medical, the physical and daily life of living with ostomies. I also now know where to gain more information and knowledge when needed. Rarely does too much surprise me in those areas over these past five years. But I am so appreciative, and feel forever treated to the magnificence of the human spirit, as I see the emotional growth that takes place as we lean on each other for support, and I can count on that!

 

United Ostomy Associations of America (UOAA) has over 300 Affiliated Support Groups around the country. To find support and information near you click here. To start or affiliate an existing group with UOAA click here

For people living with an ostomy, humid climates and certain situations may cause concern in pouch wear time. The me+ support team has put together some useful tips just for you to help optimize your pouch wear time.

Feel more confident when facing humidity with these tips:

  • Review your peristomal cleaning routine. Using baby wipes or cleaners that include moisturizers may affect your pouch seal in hot, humid weather. Clean your peristomal skin with warm water and a simple bar of soap.
  • Try a barrier wipe or spray before applying your pouch. Barrier wipescreate a film that protects the skin from the damaging effects of adhesives, body waste and enzyme attack. Using barrier wipes in combination with a protective powder may help extend overall pouch wear time.
  • If you are having an issue with tape collars starting to peel, try adding strips around the skin barrier where it meets the skin for extra security.
  • Using a seal with your pouching system may help absorb additional moisture. Seals can help prevent leaks and skin irritation by forming an absorptive barrier around your stoma.
  • Try using an ostomy belt or wearing an ostomy wrap to help keep your pouch secure and supported against your body, which may help increase wear time.
  • You may find in humid climates and situations that you need to change your pouch more often.

If you have any other questions in regards to humidity and potentially extending pouch wear time, requesting samples, or where to buy ostomy products, contact the me+ Team at 1-800-422-8811 or cic@convatec.com.

 

me+™ Answers provides tips and tricks for living with an ostomy.

Find in-depth articles on topics like diet, activity, travel, relationships and everyday life. Helpful information for people living with a colostomy, ileostomy or urostomy.

 

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. 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.

 

Imagine if there was a place where over forty ostomy product manufacturers, accessory makers, distributors, lifestyle experts, and related support organizations could gather with ostomy patients from around the world? Well, UOAA’s 7th National Conference Exhibit Hall is that place, and everyone is invited. It will be open August 8 and 9, 2019 at the Philadelphia 201 Hotel in the heart of Philadelphia, Pennsylvania.

People return to UOAA’s biennial national conferences not only because of the lifelong friendships, education, and social events but also because of the exhibit hall. It is a fun one-stop experience to ask questions about your favorite supplies or discover what is the latest and greatest in the world of ostomy care. Attendees have the chance to sign-up for sample products and talk one-on-one with representatives of all the major and specialty ostomy product manufacturers. Visitors often find the passionate owners and inventors of unique ostomy products on hand to introduce you to their products.

 

UOAA is proud to be able to provide this space for our community to gather.  The conference runs Aug. 6-10, but If you can only come to our conference for one day you’ll want to consider registering for the exhibit hall days Thursday and Friday. There is even a free box lunch Friday for all those registered attendees who enter the exhibit hall. You may want to consider staying longer, however, to take advantage of the free stoma clinic, expert educational session and surgery specific meet-ups. And don’t miss social events such as the Roaring 20s Casino Night and Music Thursday and the Saturday night fashion show, desserts, and dancing. Be sure to stop by UOAA’s table where you can sign an important petition for the Ostomy and Continent Diversion Patient Bill of Rights and learn about all the upcoming events such as Ostomy Awareness Day and the Run for Resilience Ostomy 5k.

 

Here is a list of all the businesses and organizations exhibiting this August. Like UOAA, they are dedicated to improving the quality of life of people living with an ostomy. 

 

11 Health and Technologies Inc.
www.11Health.com • 657-266-0570

11 Health helps people living with medical bags by combining peer-to-peer support with unique patented SmartBags that collect patient generated data for preventative care. 11 Health thinks and acts differently from all established medical bag companies because we see the patient as a patient – not an end user.

ASCRS – Colon/Rectal Surgeons
www.fascrs.org • 847-290-9184

You are invited to visit the ASCRS Booth and receive information regarding services ASCRS can provide, including patient referrals and patient education brochures. The scope of colon and rectal surgery includes the small bowel, colon, rectum and anal areas.

Avadim Health, Inc.
www.theraworxprotect.com • 877-677-2723

Avadim Health Inc. is the Bionome Life Science company. Avadim’s flagship product Theraworx® Protect is a topical solution that supports the skin’s outer most layer, the stratum corneum, while remaining Non-Toxic and Safe.

B Braun Medical
www.bbraunusa.com • 800-227-2862

B. Braun Medical Inc. develops, manufactures, and markets innovative medical products and offers ostomy products including Flexima® 3S two-piece appliance with a unique guiding system and a High Output System. The myosto™ resource offers ostomates the ability to request product samples and educational resources on the website. Visit www.bbraunusa.com and www.myosto-mylife.com

Byram Healthcare
www.byramhealthcare.com • 800-227-2862

Byram is the leading service and solutions provider of disposable medical supplies delivered directly to the home while conveniently billing insurance plans. We provide convenience, affordability and choice™ to make a positive difference in the lives of the people we serve.

Calmoseptine, Inc.
www.calmoseptine.com • 714-840-3405

Calmospetine® Ointment protects and helps heal skin irritations from moisture such as urinary and fecal incontinence. It is also effective for irritations from perspiration, wound drainage, fecal and vaginal fistulas and feeding tube site leakage. Calmoseptine® temporarily relieves discomfort and itching. Free samples at our booth!

Cancer Support Community
www.cancersupportphiladelphia.org

Cancer Support Community is a leader in cancer support, and is the largest cancer support organization in the world that provides 100% free services and programs for individuals and families impacted by cancer. The Community serves those with cancer, who have a family member or friend with cancer and who have lost a loved one to cancer.

Celebration Ostomy Support Belt 
www.celebrationostomysupportbelt.com • 413-539-7704

Our ostomy Celebration Belt systems are designed to protect your dignity while allowing you to lead an active life. Learn how to measure for a correct fit, get wear and care information, and order your belt with confidence.

Colo-Majic Enterprises
www.colomajic.com • 866-611-6028

Colo-Majic® Flushable Liners are designed to be inserted into a two piece closed end pouch system to collect colostomy/ileostomy output. Liners will keep your pouch clean allowing for reuse and makes output disposal quick and easy.

Coloplast
www.coloplast.us • 888-726-7872

Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, interventional urology, continence care, wound & skin care.

ConvaTec
www.convatec.com • 800-422-8811

At ConvaTec, we exist to improve the lives of the people we touch and are committed to helping people living with an ostomy live the life they want with more confidence and freedom. Our me+ program gives you the support, insights and products you need. For more information, visit convatec.com.

Crohn’s & Colitis Foundation 
www.crohnscolitisfoundation.org  888-694-8872

The Crohn’s & Colitis Foundation is dedicated to finding cures for Crohn’s Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. The Foundation is at the forefront of research in inflammatory bowel diseases in addition to educating, supporting, and empowering patients and caregivers.

Edgepark
ww.edgepark.com • 800-321-0591

Edgepark is a leading provider of home-delivered, disposable medical products. We specialize in ostomy, wound care, urological, incontinence, diabetes and more, offer comprehensive insurance options and provide free nationwide delivery. To learn how we can help meet your supply needs, please call 800-321-0591 or visit www.edgepark.com.

Friends of Ostomates Worldwide
www.fowusa.org • 502-909-6669 • info@fowusa.org

Friends of Ostomates Worldwide-USA is a volunteer-run, non-profit organization that collects donated ostomy supplies from individuals and organizations in the United States and sends them and educational materials at no cost to ostomates in need around the world.

Girls With Guts
www.girlswithguts.org • info@girlswithguts.org

The vision of Girls With Guts is to establish a national support network that assists women with IBD and/or ostomies in their search for community, acceptance, and empowerment. This rapidly growing sisterhood helps to ensure that no woman will ever feel isolated by her disease.

Hollister Incorporated
www.hollister.com • 888-740-8999

At Hollister Incorporated, we are dedicated to delivering the highest standard of quality in medical products and services, and each member of the Hollister team is committed to making a difference in the lives of people who use our products and services.

Hy-Tape Int. 
www.hytape.com • 800-248-0101

Hy-Tape’s latex-free, waterproof, zinc oxide-based adhesive is soothing to delicate skin, and removes without compromising skin integrity. Our tape is perfect for extended ostomy wearing time, adhering securely so the end user can resume normal activities such as walking, exercising, bathing and swimming without worry of detachment.

KEM Enterprises, Inc.
www.kemonline.com • 616-676-0213

KEM Enterprises, Inc. manufactures the Osto-EZ-Vent.® The Osto-EZ-Vent® is the unique venting device designed for any Ostomy pouch, which allows quick, discreet release of air pressure. Invented by an Ostomate, the OEV™ gives the wearer complete control and confidence to lead an active life. Medicare code A4366. Visit us at kemOnline.com.

Marlen Manufacturing
www.marlenmfg.com • 216-292-7060

Since 1952, Marlen has been a leading innovator in ostomy care. Offering an extensive line of one-piece and two-piece systems for Ileostomies, Colostomies and Urostomies, Marlen has always strived to provide the highest quality products while meeting the comfort and security needs of our customers. Visit our website at www.marlenmfg.com

McKesson Patient Care Solutions
www.mpcs.mckesson.com • 855-404-6727

From doctor to doorstep, McKesson Patient Care Solutions provides healthcare that fits into your everyday life. With online support to answer all your questions, a team of customer service Reps to help you choose the right supplies, and fast, convenient shipping right to your door.

No You Cant’cer Foundation
www.noyoucantcerfoundation.org • 609-464-4647

The No You Cant’cer Foundation is a nonprofit organization working to dispel the negative stigmas surrounding ostomy bags and colorectal cancer while inspiring through song. By nationally distributing informational pamphlets and creating her awareness ribbon necklaces, cancer survivor and ostomate Melissa Marshall aims to help everyone say No You Cant’cer.

Nu-Hope Labs
www.nu-hope.com • 800-899-5017

Nu-Hope manufactures ostomy devices, accessories, belts, barriers and adhesives. We specialize in custom molded pouches and custom ostomy/hernia belts. Other highlights are our oval convex pouches, and stoma wafer hole cutters. Check out the Nu-Comfort belt and new for 2019, our moldable extended wear barrier. Don’t forget the Fun Run/Walk!

Oley Foundation
www.oley.org • 518-262-5079

The Oley Foundation is a non-profit organization providing information and support to those sustaining themselves on home infused and/or tube fed nutrition. Outcome data demonstrates that those connected to Oley have better outcome: significantly higher quality of life, less reactive depression, and a lower incidence of catheter-related sepsis.

Ostomy Canada Society
www.ostomycanada.ca • 888-969-9698

Ostomy Canada Society is a non-profit volunteer organization dedicated to all people with an ostomy and their families, helping them to live life to the fullest through support, education, collaboration and advocacy. www.ostomycanada.ca

Parthenon Co., Inc.
www.parthenoninc.com • 800-453-8898

Family owned and operated for over 50 years. The Parthenon Company is a manufacturer and discount retailer specializing in ostomy supplies servicing customers throughout the United States.

Philadelphia Ostomy Association
www.philaost.org

The Philadelphia Ostomy Association was established in 1949 as the Colostomy Ileostomy Rehabilitation Association. As time went on and Urostomy surgery was developed, we changed our name to the Philadelphia Ostomy Association to support all types of ostomates.

Pouch Place
www.pouchplace.com • 865-531-1285

Nurse owned and managed ostomy care and supplies. For more than 27 years the Pouch Place has offered a complete selection of ostomy, wound care and incontinence supplies treating each patient’s needs with thoughtful and respectful care from two store front locations and an online store serving patients nationwide.

Pull-thru Network, Inc.
www.pullthrunetwork.org • 309-262-0786

Pull-thru Network, Inc (PTN) is a volunteer-based non-profit organization dedicated to providing information, education, support and advocacy for families, children, teens and adults who are living with the challenges of congenital anorectal, colorectal, and/or urogenital disorders and any of the associated diagnoses.

Quality Life Association, Inc.
www.qla-ostomy.org • 662-801-5461

The Quality Life Association, Inc. (QLA) is a non-profit nationwide association aimed at meeting the special needs of the continent ostomate and to educate others on the latest advances in ostomy options.

Safe n Simple
www.sns-medical.com • 844-767-6334

Safe n simple is an innovator that develops and markets a full line of high quality, cost-effective ostomy accessory products. The patented Peri-Stoma Cleanser and Adhesive Remover wipes are their most popular product. Now offering Security Hernia/Ostomy Support Belts.

Sanitary Ostomy Systems, Inc.
www.sanitaryostomysystem.com • 805-441-6708

Discover Our Exclusive Pouch-Emptying Systems For Use At Home And Everywhere Else. THE SOS KIT: Compresses pouch contents into a detachable, disposable collection bag. The perfect reusable solution for ostomates & caregivers. THE TRAVELER KIT: Empties your pouch anytime, anywhere – even in your car! Completely disposable, discreet and easy.

Schena Ostomy Technologies, Inc.
www.ostomyezclean.com • 239-263-9957

The revolutionary EZ-Clean Pouch system can be cleaned in less than 3 minutes. Water under pressure is dispersed via a manifold inside the pouch to provide thorough, hygenic cleansing of the pouch and stoma while sitting on the toilet. See details on how to normalize life with an ostomy online at: www.ostomyezclean.com.

Simply Beautiful
www.simplybeautifulstore.com • 304-771-1773

Wraps and Lingerie that empower women and preteens to feel more confident and reveal your true beauty while thriving with an ostomy.

Stealth Belt Inc.
www.stealthbelt.com • 800-237-4491

A Stealth Belt is an ostomy support belt that is specially designed to hold an ostomy appliance securely and discreetly. A Stealth Belt may be worn 24/7 to provide comfort and give you privacy. Stealth Belt’s great design features include, light weight fabric, a zippered pouch compartment, and a range of adjustability for ease of sizing.

Stomagienics, Inc.
www.stomagienics.com • 225-939-1460

Stomagienics Inc., was created based on an extraordinary situation involving a family member who, after having ostomy surgery, solved a plaguing issue that occurs during the ostomy pouch replacement process. We use many of his original design principles to create a revolutionary new product that will change the lives of ostomates worldwide.

Surviving to Thriving
www.elaineorourke.com/ostomyprograms • 978-281-6126

Are you struggling to live a fulfilling life with your ostomy? Elaine O’Rourke, creator of the “Surviving to Thriving: Overcoming Ostomy Challenges Program, has had an ostomy since 2005 and understands the struggles are real! Stop by to claim your gift, 3 Simple Ways to Eliminate Fears About Your Ostomy.

Takeda
www.takeda.com • 877-825-3327

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to bringing Better Health and a Brighter Future to patients by translating science into highly-innovative medicines. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Gastroenterology (GI), Neuroscience and Rare Diseases. We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines.

Trio Ostomy Care USA  

www.trioostomycare.us • 863-421-9400

Trio Ostomy USA, has an over-riding commitment to patient care with improvements to quality of life being at the heart of our business. We ensure that our products reach healthcare providers at an affordable level, offering the benefits of the most advanced silicone technology for all.

United Ostomy Associations of America (UOAA) Inc.
www.ostomy.org • 800-826-0826
United Ostomy Associations of America provides educational material, resources, support and advocacy for those who have or will have ostomy surgery, their family, caregivers and medical professionals. Stop by our booth to view our resources and show your support of the Ostomy and Continent Diversion Patient Bill of Rights by signing the online petition.

Youth Rally
www.youthrally.org • info@youthrally.org
More than 30 years after inception, the Youth Rally continues to provide an environment for young people to meet others who live with conditions of the bowel and bladder. Lasting friendships are formed, in a short 5 nights, in an atmosphere that promotes self-confidence and independence.

 

Click Here to learn more and register for UOAA’s 7th National Conference Aug. 6-10, 2019 in Philadelphia, PA.