Magazine Article: Living with an Ostomy - Stories of Confidence and Acceptance

I was interviewed by a journalist student her article was posted in a magazine

https://theroguemagblog.wordpress.com/2015/10/22/whats-in-a-bag/

What's in a Bag

By: Rida Talpur

Ed Maste stands by the cream coloured wall of The Medical Supply Store with a contagious sense of confidence. He fixes his blue coat and grey dress pants, and has a seat on one of the black leather couches. He's obviously ready to be interviewed.

As we sit down to talk, Ed starts telling me about a notation he got in high school in Holland. He placed second best in his class, something he was content with.

"Why were you proud of being second best?" I ask interested.

He smiles and responds, "Because I didn't do anything... I could have come first if I wanted to."

I quickly learn that's just the kind of brazen attitude this curious man has towards his entire life. Maste has travelled to many places in the world, from Germany to Mexico. He has worked with electronics, construction, and in the hospitality industry. Despite the many fun and enlightening experiences he has had over his 70 years, his response to the change that came on April 2012 is the one that truly surprises me. He was diagnosed with colorectal cancer in 2011. In 2012, he had an ileostomy.

I am amazed by Maste's nonchalant approach to having an ostomy. As he describes the I realize it's easy to take our lives and daily activities for granted. Whether it's the people we love most, our favorite food or even something as simple as using the washroom, anything can change in the matter of a couple months.

Colorectal cancer, though not often talked about on regular fashion media platforms, is a common problem in Canada. The Cancer Society of Canada estimates that 25,100 Canadians will be diagnosed with colorectal cancer in 2015 alone, 14,000 of which are men. Colostomies and ileostomies are often the best way of surviving this kind of cancer.

For some, this kind of survival comes at a price. Tracie Kraft is the manager of The Medical Supply Store in Pickering, Ontario. In her three years of being at the store, she has had a lot of experience with colostomy and ileostomy patients. Tracie tries to make people as comfortable as possible with this private, and to many, embarrassing experience.

" They feel that they are not functioning the way they are meant to function," she explains about many new colostomy patients.

She continues to inform me that a lot of their insecurities have to do with their appearance, and that older patients have a tougher time dealing with the experience of having this bag on them all day, every day. Since ostomy pouches are not flat against the body and, essentially, carry digested waste , people want it to be hidden.

Theresa Henderson has been an ETN (Enterostomal Therapy Nurse) for 15 years, and is one of the owners of Partners in Community Nursing (PICN)- a community nursing company based in the Durham region in Ontario. A lot of her patients have colostomies and ileostomies, and she guides them through the experience. In our email correspondence, Henderson agrees with Kraft.

"[Their] biggest insecurity is body image," she says. She continues to explain that patients worry that the bag will be seen, smelt, and if their personal relationships will be affected. Despite the prominence of ostomies and the insecurities that come with them, she mentions that there are barely any clothing brands that accommodate ostomies (aside from Weir Comfees). Ostomy clients are rarely represented in the fashion world.

The lack in understanding of the issue, and the lack of representation ostomy patients face is alarming. Until clothing retailers and modeling industries start opening their eyes to the prevalence of the issue, and blatant statistics of colorectal cancer in Canada, patients have to find ways to feel secure with and dress it through the help of people like Kraft.

"It's amazing how it's life changing, but you can keep it secret," Kraft says. She proceeds to tell me about helpful products available at the store that would help control the bag and make old and new patients more accepting to the change. She sells Hollister Adapt Ostomy Belts(14.99), which helps patients feel more secure during physical activities and pushes the bag more towards the body. She also tells me about the Hollister m9 deodorant (8 ounces is 37.99), something that drastically controls the odor of colostomy and ileostomy bags.

For men who want something that would make the ostomy bag even more subtle, Kraft's personal recommendation is the CareFX Ostomy Garment (ranges from 30.99- 36.99 depending on sizing). It's meant for people who want to dress in more fitted clothes, and keeps the pouch closer to the body, covering it entirely under one layer. The garment also helps control bag noise, something that makes the ostomy more discreet. Kraft says the garments are becoming more popular, and that it really helps boost patient morale.

Of course, Maste never really needed a boost in morale. Despite being impressed with the professionals who helped him out throughout the process, he thinks the right mindset is what actually enhances patient confidence.

"Your health is your responsibility. The medical profession is there to help you. But it is your responsibility," he says passionately. He takes his ostomy into his own hands, and constantly researches how to make his life easier with one on. He enjoys experimenting with household techniques to hide his pouch, even though he doesn't care who knows he has it. He has a hernia that formed where the stoma is; something that is common for ostomy patients. He made a hernia belt for himself by buying a belt and cutting a hole in it where the stoma is to prevent the herniated area from sticking out. Currently, he uses a sports bra to compress the pouch and bring it closer to his body.

Sports bras not your thing? Henderson goes on to list that tuck-in underwear, bike shorts, and Weir Comfee products are great ways to hide your pouch.

As Maste stresses, however, research and contact with other "ostimates" is beneficial to adjusting to the bag . He is an active member of social media platforms in which he shares his refreshing optimism with other ostomy patients. Facebook groups such as Ostomy Canada allow patients and the families of patients to share stories, ask questions, and relate.

That doesn't mean the rest of us shouldn't do our research too. It's time we stopped considering ostomies so taboo, and stopped making it a private affair. Not everyone can be as comfortable with the change as Maste, but we should be a part in making them feel that comfortable. These patients have incredible stories and experiences that they should feel contented sharing. Ostomies have saved lives, so no patient should have to feel forced into hiding. They are much more than what's in their bag.

Excellent...!

You did ostomates proud, Ed. Good on you!

This is just the sort of article that helps to disseminate information and educate the general public about the world of stomas in a positive way. It is good to see what a journalist can do with such a story and Rida certainly did well. Let's hope many more people get to read and enjoy it. Best wishes Bill

Hey Ed, I think the young lady did a good job describing you, your demeanor and your attitude. With absolutely no disrespect to Tracey and Theresa, you are the most informed on this subject and I thank you for representing us so well.
Sincerely,
Mike

Now you make me blush...
That would be true if I did not have such a brazen attitude, as Rida describes it.
And thanks for all the positive comments.
Cheers,
Ed

Great article, Ed! I really enjoyed reading it as it transported me back to three years ago when I gained my ostomy. Today, I am celebrating Stanley's three-year birthday. It is difficult at times to find the best clothing to wear, I will admit. Shopping takes some patience and lots of trying on in the store. Anyway, thank you for the positive outlook about life with an ostomy. We can do it, and we do. LadyHope

I still wear the same clothing as before, although the hernia is starting to show. I talked to my surgeon about the hernia, who claimed he could fix it, which I am sure he could and would do a great job (again), but I countered that he would have to do it about every two years. We agreed that if I needed a pant size large I would come back. (I didn't tell him that some of the pants have elastic in the belt area so they will last at least one more pant size). LOL