As reported by Harriet Baskas of MS NBC, the case of the enhanced pat-down of retired special education teacher Tom Sawyer at Detroit Metropolitan Airport in March of 2011 was humiliating. It showed a lack of empathy for the fact that he wore a urostomy bag to collect his urine from a stoma on his abdomen. It also bespoke the need for an awareness of the challenges facing men and women wearing ostomy pouches and flanges. Self esteem is vital to mental health and nothing is more challenging to survivors of diseases such as cancer and Crohn’s than a pouch collecting their fecal matter or urine. As the Japan Ostomy Association pointed out, it can be “stressful and instills panic to deal with leakage of stool or urine while in public.”
I deal with and, to a certain extent, am a caregiver to an ostomate. As such, I recognize that in many ways an ostomy is a life saver - no more colon cancer, Crohn’s in remission, etc. On the other hand, the management is also a life-changing experience that affects 70,000 Canadians.
No Respecter of Position or Lifestyle
The Evansville Ostomy News is lending its support to public awareness and inspiration by featuring famous ostomates. Its editorial writer noted that ostomy surgery respects no one and that there are probably many public persons who choose not to talk about it. However, it was also noted that "some mention does come to light from time to time and knowing these people have lived active lives of great accomplishment, can serve as an inspiration to all of us."
Highlighted ostomates from the past that we might not have suspected are:
- Former Vice President Hubert Humphrey and President Dwight Eisenhower.
- The late Queen Mother Elizabeth of Great Britain who was over 100 years old before passing away
- The late Moshe Dayan, former Defense Minister of Israel.
- Rolf Bernischke, ex-kicker for the San Diego Chargers
- Senior PGA Golfer Al Geiberger.
"You may never be a queen, king, President of the United States, or a top athlete, but whatever you do, you can see that your ostomy should not keep you from trying, ” concluded the editorial.
Ages of Ostomates
Stomas or fecal diversions can be found on people of any age, even premature infants. With preemies it is often for the management of intestinal necrosis under the direct care of Wound, Ostomy, and Continence (WOC) nurses. On the other end of the age scale, Debra Rooney of the United Ostomy Association in Vancouver reports of a 93-year-old member who has been managing a colostomy for over 40 years. In between, there is even Young Ostomates United (YOU), a support group offering social and educational focus for young people (ages 0-40) with stomas.
Challenges Facing Ostomates
What is needed to help ostomates function normally and with dignity in society?
The Japan Ostomy Association reported that “many Japanese ostomates are hesitant to leave home and have active lives in the community because they worry about how they will empty their pouches or handle leakage problems should they occur away from home.” In a JOA survey, 50% of ostomates reported these helpless feelings.” The JOA stressed that “the availability of (special) public toilet facilities to meet ostomates' needs is the key to their sense of well-being and rehabilitation in the community.” A prototype facility has been built in a spacious room in a city office. It has been equipped to meet the maintenance needs of ostomates in a variety of situations (see image).
The International Ostomy Association (IOA), an association of ostomy associations, claims to be committed to the improvement of the quality of life of Ostomates and those with related surgeries, worldwide. To help raise awareness a World Ostomy Day is being planned for October 6, 2012 in order to highlight "to the general public and global community the challenges faced by Ostomates.”
The Varying Attitudes of Ostomates
Jonathan Sher of the London Free Press reported on Jess Grossman’s campaign to make ostomies, or to use her term 'poop bags', sexy. At the age of 13, after five years of Crohn’s disease and a body that had withered to 53 pounds, she had her colon and part of her small intestine removed. During her last year of high school she was asked by a teacher to create an ad campaign for a charity. She chose the United Ostomy Association of Canada. For the campaign, she chose to create a sexy poster of herself “wearing nothing but an ostomy bag and a strategically placed bedsheet that showed lots of skin.” At the time It was not well received by either the teacher or the UOAC. Now she has her own blog which last year drew 30,000 hits:
Some ostomates desire independence. As Jess Grossman put it, “I needed independence after being sick and babied all those years.” But other ostomates feel differently. Last week I went to purchase ostomy supplies and was talking to the supplier about writing this article. She related a recent story of how she’d delivered supplies to an elderly lady in town. The supplier had recently put her business name on the back of her vehicle which included the word ostomies and the client had reacted negatively. “Now all my neighbors will know!” she’d exclaimed. The supplier had responded by pointing out that, in her opinion, if you asked ten people what an ostomy was, only one would know. Apparently, the client had not been impressed.
Disclaimer: The information contained in this article is for educational purposes only and should not be used for diagnosis or to guide treatment without the opinion of a health professional. Any reader who is concerned about his or her health should contact a doctor for advice.
Sources:
- Valerie E. Rogers. Managing Preemie Stomas: More than just the Pouch. Access Medical Supply. 2003
- Harriet Baskas. TSA Pat-Down Leaves Traveler Covered in Urine. MSNBC. Apr. 25, 2011.
- Debra Rooney. Irrigation: A Personal Account of Managing a Colostomy. Ostomy Organization. 2007
- Jonathan Sher. Londoner Looks to Make ‘Poop Bag’ Sexy. London Free Press. July 12, 2011.
- Toilets for Ostomates. Japan Ostomy Association.
- Famous Ostomates & IBD Patients. Evansville Ostomy News
James Gibson - James Gibson is a retired teacher and small business owner. He is a published writer and has a wide spectrum of interests.
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