Finding benefits in an ostomy

By Ally Author Beth Kornegay

An ostomy is an artificial opening in the body created during an operation. For many colon cancer patients, a portion of the intestine is pulled through the skin and bowel contents are expelled into a pouch that is emptied several times each day. People with an ostomy are referred to as ‘ostomates.’

There are approximately 500,000 ostomates in the United States, and many of them are colorectal cancer survivors. Other reasons for having an ostomy include ulcerative colitis, bowel injuries, and diverticulitis. In colorectal cancer, some patients are given just a temporary ileostomy so their colon can heal after surgery. Ileostomies are often ‘taken down’ once the healing process is complete, and the portion of the large intestine is returned inside the body and the outside pouch is no longer required.

Benefits of an Ostomy

While having an ostomy can be an inconvenience and require the ostomate to learn new ways of doing many of the things they once took for granted, ostomate Debi Fox stresses that once someone gets used to having it and seeing the benefits of having an ostomy, they can better understand its importance and find acceptance. Debi’s ostomy is from having ulcerative colitis.

“When someone receives a temporary ostomy, they often focus only on the date it will be reversed instead of focusing on how to live with it. Because of that negative focus, they hate every single day they have it,” Debi said.

Debi, of McLoud, Oklahoma, quickly understood that her ostomy would be permanent. Ulcerative colitis usually only affects the large intestine, but hers was so severe that it cut off the blood supply to the small intestine. Most people have 24’-27’ of small and large intestines, but Debi only has none of her large intestine and only 4.5’ of her small intestine remaining. Her rectum and anus were also removed.

Now Debi says she is able to channel much of her own personal time and energy into helping others deal with their ostomy and realizing, with a few alterations, they can do nearly everything — and sometimes more — that they did prior to having an ostomy.

Transitioning to an Ostomy

Debi’s transition to life as an ostomate wasn’t easy. She was hospitalized three different times for thirty days each with complications including severe dehydration, renal failure, and sepsis. During those hospital stays she began doing research about ostomies. When she didn’t find one central location with all of the information she was looking for, she decided to take matters into her own hands and create a resource that would benefit ostomates around the world by creating direct avenues in which to provide information for ostomy patients.

One of the websites — www.ostomy211.com — serves as a type of yellow pages for ostomy information including accessories, tips on how to change the appliance, events, healthcare information, and clothing designed especially for ostomates. The other website Debi developed — www.ostomy211.org — serves as the main website for the non-profit organization. Both sites are non-clinical organizations and do not take the place of an ostomy nurse, but enhance care by providing a wealth of information and support.

The www.ostomysupplies.ostomy211.org website serves as a supply pantry of donated ostomy supplies. Ostomy patients who no longer need supplies, changed brands, or who have supplies that no longer work for them can send those supplies to the organization for redistribution to people who may be having difficulty obtaining their own supplies. For a small donation, ostomy patients receive a set of ten appliances. Legally, an ostomy nurse cannot directly give supplies that have been donated to another patient, but ostomy 211 can help. While there is a worldwide need for ostomy supplies, the group keeps all supplies within the United States. Friends of Ostomates Worldwide helps ostomy patients outside of the United States.

Support for an Ostomy

Finding out that an ostomy is needed can be both physically and mentally challenging for patients. In addition to a cancer diagnosis, now the patient must “deal with” an ostomy. Nurses are not all necessarily trained on how to help ostomy patients or show them how to work with their bodies and the appliances. There are thousands of ostomy nurses around the United States. But with one million ostomates, their ostomy focus is often secondary to their work as normal or even wound nurses. Peer support is key. In addition to the Ostomy 211 websites, Debi also created an on-line support through a Facebook group called “OstoMyFamily”.

“Ostomy nurses often spend three days, one hour at a time, teaching the patient how to change the ostomy appliance. Over 90% of the time, ostomy nurses themselves do not know how to live with an ostomy. Peer support is needed to help show how to prevent skin breakdown, and actually have a better quality of life. Properly trained peers and ostomy support groups are key for learning to live with an ostomy,” said Debi.

An ostomy nurse certification requires a nursing degree, with additional courses for ostomy nurse certification. Although she is not a nurse, Debi has taken the ostomy classes and holds the certification of Ostomy Management Specialist Trained. She is also a Certified Patient Navigator. As such, she is able to help patients navigate the financial issues of being an ostomate by understanding how insurance companies and coding can help with expensive supplies.

Supporting Other Ostomates

Where can you find Debi now? She volunteers her time with the Colorectal Cancer Alliance as a Moderator for the Alliance’s online community, Ally to Ally. Debi lends her knowledge, experience, and support to members of the “Ostomies Save Lives!” group. If you are an ostomate looking for support, camaraderie, and advice, join Debi in Ally to Ally by registering today.

Debi acknowledges that she is not a specialist when it comes to cancer, but she has learned so much through her own trials and tribulations as an ostomate. While she is not a colorectal cancer patient or survivor, she has attended as many colorectal functions as ostomy functions. 

You’ll recognize her when you see her — she always has an empty suitcase for people wanting to donate unused ostomy supplies. She leaves it at the registration desk and anyone who needs supplies is also allowed to take what they need. All other items return home with Debi to be distributed as part of the ostomy pantry. 

“Dealing with cancer is hard enough that people shouldn’t also have to deal with the potential problems of living with their ostomy. It is not as tough as people think if they have the right support and education to learn to live with it,” she said.