drawing the line: terms, tips and tools for ostomates

Let’s keep it real. We all need a little humor in our lives when going through something traumatic. There are not many things I can think of that are more personally traumatic than when something happens physically to your body that changes your appearance.

Having any kind of bowel surgery that includes wearing an ostomy pouch is one of those experiences. Why is it so traumatic? Because there are stigmas associated with wearing an ostomy. NEGATIVE stigmas and rumors and opinions at that.

I am big on correcting the polite usage of reference to an ostomy. It is a pouch. It is not a bag, it is not a device, it is not an appliance. For all of us that need a reminder of what an ostomy is and does, here is a great description and definition:

What is Ostomy surgery of the bowel?

“Ostomy surgery of the bowel, also known as bowel diversion, refers to surgical procedures that reroute the normal movement of intestinal contents out of the body when part of the bowel is diseased or removed. Creating an ostomy means bringing part of the intestine through the abdominal wall so that waste exits through the abdominal wall instead of passing through.

Ostomy surgery of the bowel may be temporary or permanent, depending on the reason for the surgery. A surgeon specially trained in intestinal surgery performs the procedure in a hospital. During the surgery, the person receives general anesthesia.”

What does that include?

Ostomy surgeries of the bowel include

  • ileostomy
  • colostomy
  • ileoanal reservoir
  • continent ileostomy

What a great way to refer to an ostomy’s responsibility. Oh, other than saving lives. Re-routing the normal movement of intestinal content.

I cannot begin to explain how much time I have taken out of my life to explain that it is not “shit” it is not “crap” that comes out of your stoma and into your pouch. It is stomach acid, digested food, sometimes small amounts of blood. It is a mixture of things.

I love reading positive articles and statements about ostomies in the press and on social media. But, when we allow the negative commentary about ostomies to continue through these channels, whose fault is it when we are offended by those that are too ignorant to understand what an ostomy does? Why am I seeing educated individuals in the IBD community refer to ostomies with words such as “crapsacks” (that’s the most disgusting word I’ve ever heard in reference to an ostomy and it was used in an article BY an ostomy foundation just today).

How you portray your own ostomy and what it does is up to the individual, but Companion Magazine, the editors, founders, contributors and myself will never be associated with any content that refers to ostomies in a negative manner.

Now that I’ve made myself perfectly clear on my stance, here’s a little more information on how an ostomy works.

Vocabulary Words:

  • Flange or wafer: the “band-aid” part of the ostomy that you wear on your stomach around the stoma. this is what the pouch connects to. Patients work very hard to keep their flanges clean so that they stick to the skin with ease. I also had to change my flange every week to 10 days which was a process that was very private and complicated to me. I would sit in the bathroom, usually on the side of my bathtub. I would take out a new flange, which looks like this:

hol_1580x_flange_mb_3

See that hole in the middle? It takes a lot of time to cut in a circle to size that hole to fit your stoma (everyone’s is a different size). It’s very hard work to adapt to your stoma and how your flange fits. 

  • Stoma: “Stoma is a Greek word meaning ‘mouth’ or ‘opening’. Stoma surgery results in a small opening on the surface of the abdomen being surgically created.” After sizing my new flange, I would set that aside and disconnect or “un-snap” my current pouch from the flange that I was wearing. I always completed this process at night, when I had the least amount of stomach acid coming through my stoma. I would then start peeling my old flange from around my stoma. This process could be painful, difficult, and always a little jarring for me to see. The sight of your small intestine coming through your stomach never got easy for me. It was and always will be traumatic, and a sight that only myself, my father and my mother saw. No one else ever saw my stoma. If I ever have to wear another ostomy (God forbid) no one else ever would, either. I shared the image of my actual pouch with the world, but that was where I would stop. To me, I felt naked in public without my pouch over my stoma.
  • Ostomy Pouch: “An external pouch that is worn on the abdomen after bowel surgery to collect contents of the stomach and digestive system.” Once my old flange was off the hard part was over. I would quickly and carefully take the paper off the back of the new flange so that I could place it around my stoma. Then, I would take a new pouch and snap it onto the second plastic ring on the flange. Holding down on the pouch and pressing the flange into your stomach a little bit is important so that the “stick” really seals. I would always put a blow dryer over it with soft heat for a minute or two.

hollister-new-image-9-2-piece-closed-ostomy-pouch-with-filter-GOIKUKNKY

This is what my ostomy pouches looked like. I preferred the close ended pouches, but sometimes I would change between this and the open-ended. 

I think it’s important to write and share the process of caring for an ostomy and how much responsibility goes into having one. That process is a big part of the reason why I’m so proud of mine. I took such care, such pride in my ostomy. I was always determined to keep it clean, safe and comfortable for myself.

Now I take great pride in explaining how and why I was that way. It took care of me so I took care of it. I still do.

My ostomy was never a “crap sack,” my ostomy never smelled, it never “collected shit,” it never did any of that.

You know what it did do, though? It saved my life. It let me heal. It freed me from the prison that was ulcerative colitis. That’s what we should all focus on when we speak about ostomies. All of us. Including those of us who wear ostomies today.

You will never hear me disrespecting what an ostomy is or does. Nor will you ever hear me be negative about one. I choose to make this my strongest stance in life because it’s WHY I’m alive.

Everyone has the right to their own opinion. The above is mine.

photo 1

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2 thoughts on “drawing the line: terms, tips and tools for ostomates

  1. Hey Brooke. My name is Lucas, and I’ve had UC for 2 years roughly and just got my first part of the surgery done where they take out my colon and now I have a bag for a little until I get reversed. I have a lot of questions. Please email me to help me out . Thank you!!

  2. Reblogged this on The Morbus Crohnicles and commented:

    Since I haven’t had an ostomy, I can’t speak to it, but fiercelyflared does! Check out these terms, explanations and thoughts on he topic! As always, education is so important!!

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