Colorectal cancer survivor Allison shares her ostomy story. “No one truly understands what you are going through physically and psychologically more than those who have been there themselves.” Check out her mythbusting videos and more.
By Ellyn Mantell
The untimely, shocking and terribly sad death of Chadwick Boseman added to the pall in the air last Saturday morning. I looked at my CNN feed on my desktop with my mouth agape. How could it be that such a beautiful and talented man could die so young? And what evil transgressor claimed his life? Like so many, I admired his work for the past few years. He broke my heart portraying the challenging life of one of my husband Bruce’s baseball icons, Jackie Robinson in the movie 42. He played him with bravery, grit and quiet determination and I immediately fell in love with him! As the expression goes, “he had me with his smile,” when he was treated fairly. Sadly, Jackie Robinson was mistreated by the very society that valued him as a ball player. Chadwick Boseman got that, and made us all get it! And in the movie Get on Up, he portrayed James Brown, showing his incredible versatility, as well.
Black Panther, although I assumed would not be my jam, as the kids would say, turned out to be fantastic, and once again, Chadwick carried the film. He was such a likable actor, and his warmth and dignity always came through. And I felt the same warmth and dignity from him in Da 5 Bloods, as he captivated and commandeered the screen.
In real life, where there were no cameras, Chadwick Boseman was a true, real-life hero. Apparently, eschewing publicity and accolades, he visited sick children and became someone in whom they could trust. Little did any of them, or us, know what was happening in his own life.
Suffering for 4 years with colon cancer, he handled every series of meds, chemotherapy and surgeries privately and quietly. Bulking up or slimming down for a role in a movie, he did it with little fanfare, and certainly, no hint of what his body was enduring over the grueling months and months of treatment. His is truly not a story of how he died, but of how he lived.
However, in his death, there is a message for all of us. Chadwick was 43 years young when he succumbed to this horrible disease. We think of colon cancer as an older person’s disease, but clearly, it is not, and there are many younger with it. The statistics also say that black and brown young people are more vulnerable. Let this be a warning for all…get tested! A colonoscopy isn’t fun, but it is imperative. It isn’t the first thing people want to do during the pandemic, but it is not to be ignored. A test widely available, and not to be missed, could not only save your life, but save the demanding treatments that our poor hero endured. I have read he had a temporary ostomy, which was reversed, and we will probably never know if that is true. It doesn’t matter…in his usual way, our hero drew attention to the deadly disease that needs to be identified and treated early for best chance of survival.
Deanna Brown-Thomas, daughter of the late James Brown said Chadwick visited before filming Get on Up, and that he was “the epitome of Black Elegance.” May I take that comment one step further? I would like to point out that Chadwick Boseman was the epitome of Human Elegance, a man in full, to be appreciated, to be admired, to be emulated, and a leader for us all.
Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy
By Ellyn Mantell
Setting the scene for you, imagine the patient who has controlled ulcerative colitis or Crohn’s Disease, or diverticulitis and is suddenly terribly symptomatic with infection and unremitting agonizing pain. Or consider the patient who has an accident in the intestinal region of their body. Or the patient who hears the news following a colonoscopy that there is colorectal cancer. Or the patient, like me, whose motility issues have made it impossible for the bowel to function. All of these scenarios are happening every day, all day, in hospitals and households and they all may very well lead to either a colostomy or ileostomy. (I believe a urostomy is always a permanent surgery)
Frequently, depending upon the physicality of the ostomy, a reversal in a matter of six months to a year is either discussed or promised to the patient. It is usually explained that for the connection to heal, it requires that time, and once healed, the reversal is smooth sailing. Except, in many cases, it is not, and that is what I want to bring to your attention, based on the people with whom I have spoken. Please remember, I am not a medical professional, but I interface closely with many patients in many situations, so I speak from my observations.
Sometimes, during those 6-12 months, the sphincter muscles of the rectum stop fully functioning, and the patient may be tied to the bathroom as never before. Or the connection is narrow and there may begin a pattern of bowel obstructions due to the backup of stool. Other times, the surgeon had good intentions for a reversal, but the patient is simply not a good candidate due to illness or stepping out of remission of some disease process.
The reason I am writing this graphic and perhaps uncomfortable blog for many to read is that an ostomy can happen to anyone for a variety of reasons. UOAA estimates there are 725,000 to one million of us in the United States who have ostomy or continent diversion surgery. I want to educate all ostomates that making peace with their new anatomy may be safer and provide a more predictable future than hopes for a reversal. I believe and have heard from others who give ostomy support that those who know they will be an ostomate for the rest of their life tend to be more open to embracing their new body, physically and emotionally. Those who have been given (false, in some cases) hope for a reversal are frequently disappointed and angry, feel betrayed and lose faith they will ever be “normal” again.
Support Groups are a wonderful way to begin to think of the new normal. It is so beneficial to meet like people, learn about appliances, clothing, foods, sleep, intimacy, maintaining health and to simply share experiences. If you cannot find one in your area, contact the United Ostomy Association of America or your local hospital. Take a family member, caregiver or friend if it gives you comfort. I guarantee you will feel empowered by taking this step, whether you are having a reversal in your future, or are embracing your ostomy for life.
Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy
Give back to those in need with a gift to sustain this website and programs such as the Ostomy Patient Visiting Program
Imagine if everyone dealing with the emotions and physical changes of ostomy surgery could see a friendly face before them in their hospital room? Someone who knows what they are going through from their own experience and can tell them things will be alright – that they too can thrive in life with an ostomy. Someone who can listen to their feelings and make them feel less alone in those vulnerable first days.
UOAA’s Ostomy Patient Visiting Program is one of the most important services we provide through our over 300 Affiliated Support Groups (ASG). This program offers person-to-person support, reassurance and practical information to those who have or will have ostomy related surgery and their caregivers. Ostomy visitors who have completed UOAA’s Certified Visitors Training Course through their ASG will have a clear understanding of their role and responsibilities, and will strive to be a central member of the ostomy patient’s rehabilitation team (includes the surgeon, WOC nurse, hospital floor nurse and ostomy visitor.)
Your gift will enable UOAA to continue to provide services, such as this website filled with trusted information, and our Ostomy Patient Visiting Program. One of our goals is to update the certification course training manual and instructional video, and make the training program more internet-friendly which is critical to its future success. With the estimated 100,000 ostomy surgeries performed annually, it is vital for ASGs to have access to an up-to-date course to teach key skills to those who would like to become certified ostomy visitors. Click to donate.
This is your opportunity to make a difference, providing a vision of hope and reassurance to new ostomates and their caregivers that they are not alone. Thank you for your support.
UOAA Supports the Survivors of Colorectal Cancer
Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.
Recent research has confirmed what many have long suspected–more young people are dying of colorectal cancer. Ten percent of all new colorectal cancer patients are under the age of 50 and are too often misdiagnosed.
People with other bowel diseases have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.
If you need to have lifesaving ostomy surgery because of colorectal cancer or any other reason, education and peer-support is available from the approximately 300 affiliated support groups of United Ostomy Associations of America. Ostomy patients of all ages and their families, friends and caregivers are welcome. Find a meeting near you today. You are not alone.
UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.
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
Cannot be removed by surgery
Be squamous cell carcinoma cancer AND affect the anus
returned following surgical removal of tumors or cancer cells
Be a small-cell or oat cell carcinoma cancer
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 firstname.lastname@example.org.
Colorectal Cancer: Be informed if you are a candidate for an ostomy reversal
By Joanna Burgess-Stocks, BSN, RN, CWOCN
- Not everyone who has an ostomy as a result of colorectal cancer and other diseases will have the option of having their ostomy reversed. Some people will need to keep their ostomy for life.
- Your surgeon will determine when an ostomy will be reversed. There are many factors that determine a reversal such as the extent of the disease, a patient’s overall health and treatment process (radiation and chemotherapy). Most patients with temporary ostomies will have the ostomy for about 3-6 months.
- Surgery for reversal of an ostomy is usually much less involved than the surgery that you had to create the ostomy. So if you are feeling nervous, keep that in mind. A typical hospital course is 3-4 days on average.
- For some patients, interrupting bowel function with a temporary ileostomy increases the chances that you will experience alterations in bowel function after reversal of your stoma. These symptoms can include rectal urgency, frequency, fragmentation of stool and incontinence. It is important that you notify your surgeon as soon as possible with these symptoms. Treatment includes behavioral strategies based on the symptoms and includes dietary modifications, incontinence products, skin care (use of barrier creams such as zinc oxide) and medications such as loperamide. More involved but helpful recommendations are pelvic muscle retraining (PMR) to regain sphincter strength and biofeedback. This therapy is done by a highly trained physical therapist.
- Some physical therapists recommend PMR prior to surgery or radiation to assess muscles and teach strategies for ongoing muscle strengthening that can be carried over after surgery. This helps to address any coordination or existing weakness prior to radiation due to chemo or post-operative recovery. If PMR is recommended after surgery, it is best to wait at least 6 weeks and with the surgeon’s approval.
United Ostomy Associations of America
P.O. Box 525
Kennebunk, ME 04043-0525
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm (Wednesday until 2pm) EST. If you have an emergency, please dial 911 or contact your local medical professional.
Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice.
UOAA is the leading organization proactively advocating on behalf of the ostomy community. Recognizing that we are always stronger together, we encourage everyone to get involved by joining our Advocacy Network. We’ve also created several Advocacy Tools and Resources to help you successfully advocate on behalf of the ostomy community to ensure every ostomate receives quality care.
- Bringing People Together Around the Globe for Ostomy AwarenessSeptember 17, 2021 - 2:07 pm
- Physical Rehabilitation After SurgerySeptember 15, 2021 - 2:14 pm
- A Worldwide Movement For Ostomy Rights!August 18, 2021 - 3:05 pm
- Jasmine’s StoryAugust 11, 2021 - 9:16 am
- Matt’s Story: Living Life Intentionally with Short Bowel SyndromeJuly 20, 2021 - 2:00 pm
UOAA does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.