Opening up about my ostomy

Last weekend I took a course to recertify my Wilderness First Responder credential with the Wilderness Medicine Institute. The first order of business in the course was to do short introductions with the other class participants. My heart pounded as my turn to introduce myself to 25 absolute strangers fast approached. I had planned to say something about my ostomy to the group, but I was having second thoughts. Maybe I should just stick to a standard intro and move on to the next person? After all, we only had to say four basic things: our name, where we were from, what we would be doing outside at that moment had we not been in class, and what our previous pertinent medical experience was. None of these things really had to do with my ostomy, right? Why did I feel this huge need to let everyone know?

It would not be my standard practice to announce my ostomy if I was taking a class on computer programs or art techniques. However, wilderness medicine courses involve a lot of mock wilderness medicine scenarios where we role-play rescuer and patient. As course participants practice patient assessments on each other, abdomens are palpated and shirts get peeked under to see if there are any clues to injuries. It is not unusual to have fake bruises or wounds put on our bellies and other body parts with stage make-up to make things more realistic. I knew it would be impossible to hide my ostomy. I wanted to have everyone know about it right away so there were no awkward surprises. And I didn’t want to explain it individually to each team I worked with — I only wanted to have to mention it once.

Recovering from a fake head injury after a wilderness medicine scenario.

As my turn to introduce myself crept closer and closer, and my palms became sweatier and sweatier, I had a decision to make. It would have been so easy to give into my fears and not say a thing about my ostomy — but that is not what I did. Instead, I took a deep breath and spoke:

Hi, I am Heidi. I am from Golden, Colorado. If I wasn’t in class today, I would choose to be rock climbing with Doug, who is my husband. (I motioned toward Doug who was sitting beside me as a classmate.) I have been a Wilderness First Responder since 1998. I have also had a lot of medical experience in dealing with one of my own health issues. Eighteen months ago I became severely ill with a disease called ulcerative colitis and had my entire colon removed. I now have an ostomy where my small intestine sticks out of my belly and I wear a pouch over it. If you see this over the next couple of days, it is not part of a scenario (I smiled and chuckled).

I looked around the room to see if anyone was looking at me in a strange way, but they weren’t. The instructor nodded and smiled at me like he did with each person, and the introductions continued without the loud sound of a record-scratch. As the heat in my flushed face dissipated, a huge sense of relief washed over me. Now I could relax and enjoy the course, knowing that everyone would know what the pouch on my belly was for, should they see it.

Sure, I probably could have worn a wrap. But it is likely that people would have been just as curious about that. Anyway, as much as I like ostomy undergarments, nothing is quite as comfy for me as my regular low-rise undies with my pouch flopped over the top. I knew I was going to be sitting in class for two days and wanted to be comfortable.

My pouch is easily visible when my shirt is lifted, but it ended up being no big deal during the course.

As the class unfolded over the next two days, I was happy to discover that people didn’t treat me any differently because of my ostomy. When we ran through head-to-toe exams and practiced “log rolling” to check each other’s spines in the wilderness medicine scenarios, there were times that my shirt rode up and everyone could see my pouch. Yet not one person acted awkwardly towards me and no one tip-toed around me when it came time to touch my belly or move me around. I had a great class, refreshed all my skills, passed my exams, and was successfully recertified.

My mock broken radius is all splinted up.

Looking back, I am so glad I decided to share the information about my ostomy with the group in those initial moments of class. Being open about it not only helped me feel more relaxed about people seeing my pouch, but it allowed the other course participants to be more comfortable with it as well. More and more, I am discovering that this is true in so many aspects of my life with an ostomy.

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9 thoughts on “Opening up about my ostomy

  1. Well done and I’m proud of you for being so brave. I said “oh, no” to myself before I read that you had a fake head injury, the pic injuries look so real. Great to see you out. Your belt hits your ostomy the about same place mine does….how do you maintain flow to the pouch bottom while keeping pant waist snug enough from falling down? If I wear my pouch inside my pants, the waist band sits right on the lower edge of the barrier opening and cuts off flow. Very frustrating. So I end up having to wear a Classic Wrap over REI fleece pants. Haven’t been able to wear other pants since my ileostomy as jeans and slacks just don’t work well with a wrap. Looks like you’ve solved that problem … tips much appreciated.

    1. Thanks Cary. I am glad you read the caption on the photo:)

      My jeans work thanks to my body shape. I have a narrow waist compared to my hips. Therefore, my jeans hug my hips, but still gap at the waist. It is in this gap that my stoma sits. So, even though my waistband often rests across my stoma (especially after my pants stretch a bit and sag down), it isn’t tight there. I can actually fit my hand between my waistband and stoma even in my jeans that are tighter everywhere else. Because my hips are holding up my pants, my belt doesn’t have to be that snug so it doesn’t compress my stoma. I am guessing it might be harder for those with a straighter body type who don’t have defined hips to help hold up their pants and must rely on a tighter belt.

      It also helps that my stoma is on the longer side (1.5 inches). It flops down towards the bottom of the pouch so even when it is sort of squished, it still outputs downward. My output also tends to me more liquid or applesauce consistency so it usually makes its way to the bottom of the pouch easily. I rarely get the pancaking effect that some do.

      I don’t have too many tips to offer except to try on a lot of pairs and find a brand that has a rise that works with where your stoma is located. You might have to find something with a higher rise (hard to find now days) that rests above your stoma. When I find something that works well, I often buy a couple of pairs. 90% of my pants and shorts are mid-rise ones from Eddie Bauer. They are what I wore to my stoma placement meeting and now they work so well with my location. I cringe to think of what will happen if Eddie Bauer ever goes out of business!

      Have you tried the Comfizz boxers? They are like a wrap with legs and I often wear them under my jeans when I really want the pouch to not show. I don’t have much luck with wraps under my jeans… they always roll up on me.

      Best of luck.

      -Heidi

  2. Hi again, great report Heidi, made a comment on another ostomy blog the other day about calling “it” a medical device and carrying on – such as at airports etc, but I think it does seem to help others if we are just up front and say what it is like it is and move on , no one ever seems too bothered !!
    Thanks again Darren

    1. Darren,

      Thanks for the great comment. I think it does help to just be open about one’s ostomy. I get so tired of trying to hide it all the time as if it is something to be ashamed of. Worrying about people seeing it and what they will think is such a waste of mental energy. It was soooo liberating to know that everyone knew about my pouch and I could just be carefree in my own body without concern.

      -Heidi

  3. You never know what the other people will come across when they rescues someone they could have a stoma, and am sure they were glad of the chance to work with someone with one. Well done

    1. Thanks Michelle. It did feel amazing to help educate others. Not only might it help them in their role as Wilderness First Responders, but there are now 25 more people out there who have met someone with an ostomy and have seen the active and adventurous life that is possible after this surgery.

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