If you have been diagnosed with colon cancer and your condition makes it impossible for you to work, you might be eligible to receive Social Security disability benefits.The Social Security Administration (SSA) oversees disability programs that provide benefits to those who are unable to work, but who meet specific criteria.

Social Security Disability Insurance (SSDI) is available to those who meet the medical criteria that have been established to qualify as disabled and also have meet the past work requirements. To qualify for SSDI, you must have worked enough to earn sufficient credits and pay enough taxes. Usually, that is the equivalent of five years full-time work out of the last 10 years.

The claims process is very complicated. In addition to applying for benefits, you must make sure the SSA gets your medical records, documentation of your symptoms, any physician notes, details of your treatments and how they impacted your condition, and proof that your condition is severe enough to impact your daily living and ability to work.

While advances have been made in cancer treatment and you might have a good prognosis, you might be unable to work while undergoing treatments such as chemotherapy or radiation because they can significantly impact your ability to function leaving you nauseated and fatigued.

Before completing an application for Social Security disability, talk with your oncologist. Your oncologist should be familiar with the process and will be able to tell you whether or not he or she believes you would qualify for benefits. Your oncologist can even complete some additional paperwork in support of your claim.

When your oncologist is supportive of your disability application and provides additional documentation, and makes a written statement on your behalf and completes a residual functioning capacity (RFC) form, it can have a significant impact on your disability claim and help you get approved for monthly benefits.

Medical Qualifications and the Blue Book
There are strict guidelines involving the medical qualifications that must be met for an individual to be approved for disability benefits. The SSA uses a medical guide that is called the Blue Book. The Blue Book has different bodily systems listed with different conditions listed for each system. In order to meet the medical criteria, an individual must meet the condition requirements that apply to that condition.

If you are unable to meet those specific criteria, your condition’s symptoms might meet the criteria for specific symptoms or for another condition that is caused by the dominant health problem. Some conditions are approved for benefits solely on diagnosis of a condition but others are more challenging to prove per the SSA guidelines.

Colon cancer applications for disability fall under Section 13.18 of the Blue Book, which is for cancer of the large intestines. To be approved based on the listing, your colon cancer must:

Be a form of Adenocarcinoma AND
returned following treatment
OR
Cannot be removed by surgery
OR
Be squamous cell carcinoma cancer AND affect the anus
AND
returned following surgical removal of tumors or cancer cells
OR
Be a small-cell or oat cell carcinoma cancer
OR
Is any colon cancer that spread past the lymph nodes in the area of the cancer’s original development.

Qualifying for Disability Using an RFC
If your colon cancer doesn’t meet the medical criteria of the Blue Book, you might qualify by using the RFC. This form clearly defines your limitations and how your daily life is impacted. Your physician completes the form to show what you can and cannot do at this point. It clearly states limitations with lifting, reaching, carrying, fingering, stand, sitting, and walking. This completed form will give the disability review team or administrative law judge a clear picture of how your life has been impacted and how you are no able longer to perform work duties.

Applying for Benefits
If you are ready to apply for disability benefits, you can go online to www.SSA.gov and complete the application or call 1-800-772-1213 to schedule an appointment at your nearest SSA office to start the process in person. All forms must be completed in detail and you must have as many of your medical records as possible to support your claim. You can enlist the help of a disability attorney or advocate to help you with your claim and to improve its chances of being successful.

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/or by contacting them at help@ssd-help.org.

Bruce and I were so young when we met at a dance, and for the first two decades of our married lives we never thought about life-altering health issues. And then in 1993, I had my first major bowel obstruction caused by an adhesion from a hysterectomy three months before. Suddenly we heard words like peritonitis, bowel resection and small bowel blockages. That vocabulary grew as the ramifications of 22 abdominal surgeries caused more and more scar tissue and concomitant problems. Finally, three years ago, after agonizing episodes and continuous visits to the emergency room, my surgeon and I agreed that it was time to see if an ileostomy would provide some relief.

I virtually bounced into the room with my ostomy nurse as she prepared to mark me right before my surgery, so hopeful that the tide would finally turn. She then walked us to the operating room prep area, preparing me for what was to come. But nothing prepared me for the way I saw myself the first time in my own full-length mirror. My body had betrayed me and I was now “marked” in a very different way. I looked to my lifelong dance partner with tears in my eyes.

Bruce took me in his arms and told me that not only did he love me, but that he had such respect and admiration for me, and I suppose “Lily,” as I refer to my stoma. My mother was Lillian and she gave me my first life, while Lily gave me my new life, and with that a sense that I can do anything. And the best news is that instead of spending time in the emergency and operating rooms, we have time to dance…even closer than ever before!

By the way, I am very proud to say that I am the president of my Ostomy Support Group in New Jersey, and I never miss an opportunity to welcome new or prospective members…how wonderful to be associated with this new life I so desperately needed, and so very much appreciate!

By Megan Herrett

Adequately summarizing what our family has gone through over the past almost ten years requires going back to the very beginning.  Our daughter, Maggie was three months old when we realized that she looked a little jaundiced.  Our pediatrician agreed and ran what would be the first of hundreds of tests to determine what was wrong with our baby and why her liver function tests were so elevated.  After being seen by multiple specialists here in Boise for a few months, we were referred to a doctor at Primary Children’s Medical Center in Salt Lake City in November of 2008.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

When Maggie was about six or seven months old, we noticed that she was starting to scratch quite a bit.  Her arms, feet, and ears were covered in scabs and scratch marks.  This itching was a side-effect of her liver not processing bile correctly – when not processed by the liver, the bile backs up into the bloodstream and circulates back through the body, resulting in an increase number of bile salts in the body.  It is these bile salts in the bloodstream that make an individual with a liver disease very itchy.

At first, we were able to control her itching through several medications but by the time she was 12 months-old, her itching had become unbearable.  At that time, her liver was deteriorating quickly and she was exhibiting some developmental delays as a result of the incessant itching.  In a matter of weeks, she had pulled out all of her hair and she was maxed out on her medication dosages.

We were presented with the option of an ostomy-placing surgery when Maggie was just over one-year-old as an alternative to a liver transplant.  The purpose of her ostomy would be to (1) drain bile from her body to combat the itching, and (2) slow the progression of her disease by giving her liver a much-needed reprieve.

To be honest, I was devastated when I first heard the words, “ostomy bag.”  I imagined a life where Maggie would never wear a bikini or be a cheerleader or be captain of her swim team – all very big concepts when you are talking about a one-year old child.  I imagined her being bullied because she was different.  But, we needed a solution…and we needed to act quickly.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Maggie underwent ostomy surgery on October 30, 2009, and we haven’t looked back.  She is now eight-years-old and is thriving health-wise as well as academically.  Additionally, she is also excelling on a competitive gymnastics team.  And although Maggie absolutely beams on the outside, she struggles with confidence because of her ostomy pouch.  She is fiercely private and does not want any of her peers to know.  My husband and I have worked tirelessly to emphasize to her that her pouch is nothing to be ashamed of – after all, it saved her life and she would not be the person she is today without it.

In 2010, we were blessed by the birth of our son, Winston.  We soon discovered that he was plagued with the same disease and would then undergo the same surgery when he was just over one-year-old.  Although this news was devastating at the time, we have come to realize that it was a blessing in disguise.  Both of them have the same liver disease and both wear ostomy pouches – commonalities that they can rely on when the going gets tough.

I can still recall my “aha moment” though – that moment when I realized that we would not be a family that sat idly by and let her pouch be a source of shame or embarrassment for her.  Maggie was probably two years old at the time and we were in the throes of potty-training, where our previous line of attack of onesies and bib overalls to prevent her from yanking her pouch off, were no longer an option.  She was finally in a shirt and a pair of pants…and her ostomy bag was peeking out from the hemline of her shirt as we left a restaurant.  A man entering the restaurant noticed her ostomy pouch and said, “Ewwwww!  What IS that?”  Although my initial reaction was one of anger and dismay, it was then that I realized that working with her would be only one piece of the puzzle – we also needed to work with the community to help educate, support and raise awareness for those like Maggie so that the shame, fear and embarrassment would fade away to empowerment and pride.

It was this “aha moment” that led me to contact the United Ostomy Associations of America in January of 2016 about bringing their Run for Resilience Ostomy 5k to Boise.  My inquiry was met with a resounding “YES!”  We held our inaugural race on Saturday, October 8th and had over 160 people registered for the 5K and Kids’ Mile events.  We even had participants, including ostomates and ostomy nurses, drive in for the race from Spokane, Washington and Lewiston! And Hollister even donated ostomy pouches to include in our race registration bags.  If nothing else, I am hopeful that this year we laid the foundation for many successful years to come and got some ostomy-related dialogue started.  Instead of “ewww,” maybe people will say, “Oh, I know what that is and that saved their life!”

The Boise Ostomy 5k is now in its 4th year! For more information on our Run for Resilience events around the country visit www.ostomy5k.org

Stephanie shown here with the proclamations she had declared for Ostomy Awareness Day in 2016. (Left side proclamation is from Governor Chris Christie for the State of New Jersey; Right proclamation is from the NJ Ocean County Board of Chosen Freeholders)

Stephanie shown here with the proclamations she had declared for Ostomy Awareness Day in 2016. (Left side proclamation is from Governor Chris Christie for the State of New Jersey; Right proclamation is from the NJ Ocean County Board of Chosen Freeholders)[/caption]

In 2003, at the age of 29, I was diagnosed with Crohn’s Disease. I remember telling my family that if I ever had to “poop in a bag” to just kill me. But in 2009, at the age of 35, what 29 year old me would have thought to be a worst nightmare ended up being the thing that saved my life.

In November of 2009, a complication of Crohn’s Disease, Toxic MegaColon, almost took my life. Without surgery, there was a 100% chance I would die. With surgery there was still only a 20% chance I’d survive, but at least there was a chance, so a subtotal colectomy with ileostomy was performed, and 4 days later, I was brought out of a coma.

So grateful to be alive, it was then that I realized that “pooping in a bag” was not what I once thought it was. In fact, having an ostomy was life saving! But the thoughts I had regarding ostomies are not mine alone. For too long, there has been a stigma and much misinformation surrounding ostomies and ostomy surgery.

Because of this, some have chosen suffering and death instead of an ostomy and life. Therefore, raising ostomy awareness is important to me because LIFE is important to me. I want people to know that having an ostomy is just another way to live life to the fullest.

My favorite saying regarding an Ostomy/Stoma is this: You can make it your friend or you can make it your enemy. If you make it your enemy you will have a hard time surviving. But if you make it your friend, not only can you survive, you can thrive.

Love your Ostomy and embrace life!

My colostomy story began when, at age 56, I discovered that I had late-stage colorectal cancer.  A large tumor was discovered during my first colonoscopy, and it was cancerous.  Thus began a long journey that eventually led to colostomy surgery on my 64th birthday.  After the initial surgery to remove the tumor and part of my colon and rectum, I had radiation and two rounds of chemotherapy.  The radiation permanently damaged my intestines and caused a bowel blockage that required more surgery, followed by years of chronic diarrhea and abdominal pain.  I finally found a surgeon in my home state who cut out some of the intestinal damage and gave me the surgery that infinitely improved my quality of life.

Before the colostomy, I was on a very restricted diet, but I can now eat many raw foods, including what I had missed the most for six years—salads!  It has taken me a while to adapt to changing and wearing the pouch, and I have had some “accidents” along the way.  These are usually caused by my skin allergy to adhesives, which causes the skin barrier to fail when I have had a significant amount of stoma output.  Still, I usually have enough time to get to the bathroom before the leak causes a major problem.  I have, however, received some valuable tips on handling and preventing problems online, because there are no ostomy nurses or support groups near where I live.  I have also shared information on how to reduce skin allergy problems and passed on what has worked and not worked for me.

My background:  I am originally from Baton Rouge, LA, and have a Master of Journalism degree from Louisiana State University.  I am a retired Army officer, having spent 20 years on active duty, mostly as a Public Affairs Officer.  I served two overseas tours in Germany and met my husband when we were both Army majors stationed at the Presidio of San Francisco.  My cancer was diagnosed in 2007, while I was working as a civilian for the US Army Cadet Command at Fort Monroe, VA.  My colostomy surgery was performed by Dr. David Beck at Ochsner Medical Center in New Orleans.  He is also retired from the Air Force.

Saying that my ostomy gave me my life back is not an understatement. I don’t think I have ever felt better in my entire life. I was diagnosed with Crohn’s when I was 15 and in the 12 years I suffered before having surgery, I never once achieved full remission. I missed more school than I attended, had to take a medical withdrawal from college, and struggled to find and keep a job. I was in so much pain and having so many symptoms that I couldn’t leave the house for entire days at a time.

After having my son I finally agreed to undergo ileostomy surgery after I had refused it for years. I was concerned about having a bag on my belly and the effect it’d have on my life. When I had a bunch of questions I referenced UOAA’s resources including the website and Facebook page especially when finding a bag that wouldn’t leak or cause skin issues. It has been incredibly helpful to see what products others are using. There’s always a great tip or trick within the community.

The truth is since my surgery I never felt more alive. I’m not afraid of road trips or adventures and I finally have the health and strength to do whatever I want to do. My entire outlook on life changed for the better and instead of being embarrassed about my symptoms, I am now confident and happy and proud to tell the world I’m an ostomate! I go to ostomy support groups and will always share my story and be available for questions. Sometimes it’s good just to know there is someone else like you.

I had ulcerative colitis that was unresponsive to any treatments including remicade infusions. In January of 2006 I had ostomy surgery. My first comment was “It is so quiet down there.”

After three horrible years my life was given back to me. I am now disease free and colon cancer is no longer a worry. My ostomy surgery has allowed me to have a more rewarding relationship with my wife and family. Having an ostomy has not stopped me from enjoying activities such as cycling that I participated in prior to surgery.  I still ride whenever I can.

As soon as I was physically able one of the first things I did was join a local UOAA affiliated support group. The support group was a lifesaver for me. When I first joined I was having terrible skin problems and there seemed no solution. The support group facilitator made one suggestion and my skin problem was completely resolved!  

As a result of my ostomy I have discovered a new passion in my life that I probably never would have done otherwise. I am now a freelance writer on ostomy topics that are of interest and concern to ostomates and their families and friends.  My articles appear in our support group newsletter and the Phoenix magazine. I want people who are facing this surgery to know that their quality of life can be restored through ostomy or continent diversion surgery. It truly is lemons into lemonade.

After healing from ostomy surgery, people of all ages and types enjoy swimming, surfing scuba diving or just relaxing in a hot tub. We understand the anxiety from worrying about leaks can keep some people out of the pool. There are no ostomy specific restrictions to swimming in public places. “Swimming has made me stronger both physically and emotionally. It is a great outlet and has made me even healthier. I feel and look more beautiful” says Lynn Wolfson of Florida. Lynn has two ostomies and swims in triathlons. Here are some solutions to common concerns.

I’m afraid that my pouch will leak or my wafer will loosen while I’m in the water.

Remember, your pouching system is resistant to water and with a proper fit, it is designed not to leak. If you have output concerns, eat a few hours before swimming. A good habit is to empty your pouch before taking a dip. If you are hesitant about how your wafer will hold, take a practice soak in your bathtub. It is best to avoid applying a new skin barrier/wafer or pouch right before swimming. The WOCN Society recommends allowing 12 hours for proper adhesion. Using waterproof tape or water-specific barrier strips are not necessary for most, but can provide peace of mind. There are a wide variety of ostomy supplies on the market for swimming and you should be able to find a solution that works best for you. If your pouch has a vent, use the provided sticker over the air hole so that the filter remains effective.

What can I wear or do to help conceal my pouch and keep it secure?

Wearing a patterned or darker color is less transparent than a light-colored swim garment. Options for women include patterned and boyleg one-piece suits. For a two-piece suit, consider a mix and match of tankini tops, high-waisted bottoms or boy shorts. You can also look for a suit with a concealing ruffle or skirt. Men often favor a higher cut waist for trunks, or suits with longer legs. Stretch fabric undergarments and swim or surf shirts also provide support. Ostomy bands and wraps are also commonly used. On the beach or poolside don’t be surprised to know that some ostomates are comfortable with simply wearing the swimsuit of their choice- with swim fabric pouch covers or just an opaque pouch. There is also swimwear and accessories specifically made for ostomates by a variety of manufacturers.

What do I do if I am approached by pool personnel concerned that my ostomy is an open wound or believe ostomy pouches are not allowed in pools?

The best approach here is to stay calm and try to educate. However, unless you or another person tell pool personnel, no one should know you have an ostomy. Contact UOAA Advocacy Manager, Jeanine Gleba if this is a recurring issue at your swim location. The Americans with Disabilities Act ensures your right to pool access and most disagreements can be solved through education before exploring any legal recourse. Some scuba diving operations also incorrectly list having an ostomy as an exclusion on pre-dive paperwork. Contacting PADI (800) 729-7234 can help educate them that there is no reason to avoid diving if you have an ostomy pouch.

Meet with a WOC nurse for questions about what supplies may work best for you and stop by your local UOAA Affiliated Support Group or visit our discussion board at ostomy.org to ask what your peers do to feel confident and secure while swimming.

Get yourself a bathing suit and start swimming!

The 5th Annual Run For Resilience Ostomy 5k will be held on Saturday, October 6, 2018.  All proceeds benefit the United Ostomy Associations of America, Inc (UOAA) charity, a 501(c)(3) organization. Donations are tax deductible.

Registration Coming Soon!

RACE DAY SCHEDULE (tentative)

7:00 a.m. Registration
8:00 a.m. 5K Run/Walk
9:00 a.m. Kids Fun Run
9:15 a.m. Awards Ceremony

Kids Activities and bidding at the silent auction throughout the morning

RACE COURSE

The race will be held near the Southpoint Mall area of Durham. The race will take participants on the scenic American Tobacco Trail (ATT) over the new I-40 bridge extension.  The out-and-back course will start and finish at the parking lot on the grassy knoll next to the ATT located off of Renaissance Parkway in Durham, NC.  The turn-around will be on the ATT, just before where the trail crosses Dunhill Drive. This 5K course is flat except for one uphill section on the ATT just south of the I-40 bridge.  This course is a timed race.

PARKING

Ample parking is located at the Renaissance Village shops off of Renaissance Parkway at 8160 Renaissance Pkwy, Durham, NC 27713

PACKET PICKUP

Pre-race Packet Pick up:  To be Announced…

PRIZES

Prizes will be awarded to the top 3 male and top 3 female overall finishers, age group winners, Stroller winner, and the top 3 ostomates.

AGE CATEGORIES
<15
15-19
20-29
30-39
40-49
50-59
60+

T-SHIRTS

Tech T-shirts will be included with registration if registered before the deadline. Race shirts will be either unisex or female v-neck cut. You are guaranteed a race shirt if you register by September 20th. You may purchase additional race shirts for $10 each.

OPTIONAL OSTOMY POUCH

Race registration bags will have typical race/sponsor promotional items, ostomy education materials, and most importantly an ostomy pouch. We encourage non-ostomate participants to put on the pouch for the race to improve awareness and empathy for the challenges faced by people living with ostomies.

FAMILY ACTIVITIES

The Run for Resilience Ostomy 5k will be a family-friendly event including kids’ activities during the event.  Specific kids’ activities include:

– 50-meter dash

– Face Painting

-Cornhole

-Coloring

FUNDRAISING

Set up your own personal or team fundraising site and get your friends and family to reach your fundraising goals.  If you raise over $250, you will receive a unique and limited fundraising tech shirt.  Stay tuned for the new fundraising site.

SPONSORSHIP

If you are interested in sponsoring the race, please contact us at 5kregistration@ostomy.org!

DONATIONS

We will be having an incentivized fundraising challenge for those individuals who raise over $250. Those who raise $250+ will receive a custom t-shirt.  Please visit www.ostomy5k.org for more information!