11 Girls Wearing Ostomy Bags: And 11 New Learning Curves

We had a goodbye party for my ostomy and it was amazing! With my final surgery approaching on February 17th, and my ostomy being closed, I decided to celebrate the past year and a half by having a farewell party. And with the help of my friends, we bid adieu to my little life-saving intestinal button. We have just over a week left before I go into full on potty-training mode and we had to do justice to the fact that I have been flare-up, ulcerative colitis free for almost the past 2 years and plan on continuing that trend, all thanks to my little stoma.

Processed with VSCO with a5 presetAnd what better way to throw an ostomy goodbye party than making 11 of my girlfriends WEAR one for the night?! Before I go further I will be clear that I have boxes of unused products that are ready to donate. And I don’t just throw away any ostomy product without consideration since I can definitely appreciate the expense behind them. And I made it clear to the girls that if they were going to participate in this experience for me (with me) they needed to give me that honest feedback, as part of a learning process.

So here it is: I’ve assimilated all their notes and feedback and thought I would provide readers with a perspective other than my own. I’ve organized it into the common areas all of the girls touched on.

1. Approach to the idea:

When I first pitched the idea not one of the girls even hesitated at participating. In fact more than I expected offered to try it out, and even ASKED if they could join in. I had responses like “I’ll do it!” “Love it,” and “Yep, bag me up!” (Hence our hashtag #bagmeup)

2. Clothing:

Knowing the girls were going to participate in the experiment for the night, most of the girls dressed appropriately, however the topic of clothing still came into conversation.

  • “I was wearing high waisted leggings and a loose top so I think that helped. I couldn’t imagine wearing jeans or a tight top with it. I feel like that would be uncomfortable, especially when it fills up a bit.” – Lindsay

  • “ I think if it was for real and perhaps if I didn’t have a long shirt and dark pants on I would be a lot more conscious of it showing through clothes.” – Carly

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  • “It felt like I had my cell phone sitting in a pouch in one of my Lulu pants.” – Lexie

  • “I was wearing a bodysuit when I showed up and immediately wondered how I was going to put an ostomy bag on underneath my jeans, and body suit. I began wondering what kind of clothing would be appropriate to wear in normal circumstances.” – Sara

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  • “ I changed my outfit 3 of 4 different times before we came because I wasn’t sure if they would cover it. One outfit was too tight and I didn’t want it to like outline the bag!” – Sheileen

  • “I was wearing a higher wasted pant, so my bag was supported by the waist band.” – Bianca

  • “I normally wear looser clothes, so having the bag under my clothes didn’t bug me. I did feel the need to constantly pull my legging over the plastic part attached to my body (or to cover the most of it as possible)” – Victoria

  • “Knowing I was going to be wearing a bag for a night impacted my outfit significantly. I wore my loosest pants and a very baggy shirt as I had no idea what to expect, how big it would be and if it would be uncomfortable with a certain outfit.” – Meaghan 

  • “I wore a flowy top so it wasn’t always noticeable in pictures, but wearing jeans made it a little uncomfortable at times, especially when sitting.” – Michelle

3. Application

I applied all of the bags for the girls and it was REALLY interesting to see how some of them wouldn’t initially stick on. I used a combination of Hollister AND Coloplast and some of the girls really had trouble with the adhesive, making it evident that some product may not work for others.

  • “The stickiness was amazing! I said I needed a backless bra with the same sticky strength!” – LindsayProcessed with VSCO with a5 preset

  • “I kind of always imagined if I had one it would be on my left side for some reason?” […] “I did not realize how low it had to go […] this got me thinking about if your bag was full and you sat down and squished it … would it bust open?? That scared me a bit.” – Bianca

  • Processed with VSCO with a5 presetOne thing I was most surprised by was how sticky the seal was on your skin. It makes perfect sense as it would need to be.” – Meaghan

  • “The adhesive part didn’t really stick to my skin, so I was frequently pressing it back down.” – Michelle 

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4. Skin: 

  • “ A little bit of irritation with my leg sometimes with the bottom of it.” – Carly

  • “When I was driving home the sides of the pouch were scratching my skin a bit.” – Lexie

  • “Mine had trouble staying on (which I can see how this would pose a very difficult issue).” […] “But it was not itchy to wear.” – Bianca

  • “Mine stuck pretty well to me.” […] “It didn’t bug me on my skin all night. But I do still have some sticky residue left behind.” – Victoria

  • “By the end of the night the pouch lost it’s stickiness.” – Lexie

  • “I was worried about my skin around it.” – Sheileen

  • “My skin was pretty red for the next 2 days, and a little bit irritated when using any lotion or body wash.” – Michelle

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5. Comfort: Throughout the night I kept asking the girls how they were, and most of them had forgotten they were even wearing an appliance each time I asked.

  • “Another thing I found was how it was in a way awkward to sit down with the bag.” – Meaghan

  • “At times I forgot it was there.” – Carly img_7677

  • “Pretty comfortable (did not notice too much after an hour or so)” – Bianca

  • “My bag felt fine all night (probably because I was drunk)” – Maegan

  • “At first left very weird! I constantly felt the urge to hold the bag against my skin to make sure it stayed there. I later realized I was equating this feeling to having my phone in the waist band of my leggings. I also reached there a few things thinking it was my phone.” – Victoria

  • “I found myself trying to hold it all night because it felt like a foreign object against my body.” – Sara

  • “The bottom of the bag pinched my skin at times.” – Michelle

6. Water Simulation 

We gave a couple of girls the experience of filling it up with water so they could feel the weight of it, adjust their clothing and then empty it

  • “When I filled the bag up I felt like I had so many concerns the whole time. Like will it open when I sit down? Can people see the bulge that it might make? What would I do at someone else’s house if it opens and everything got wet? What clothes will I change into or will I just have to go home?” […] I felt worried when I was emptying it that it was going to get all over me as well. It just changed my entire mind set throughout the night as I feel as I was worrying about it.” – Sheileen

  • Carly forgot to empty hers and wore it full of water all night…which in turned to a difficult moment removing the appliance.

  • Sam asked if she could empty hers into my kitchen sink (weird but OKAY) and then spilled it everywhere. I gently reminded her that the splatter all over her shirt would not be water had that been me. To which she replied, “This is traumatizing!” (She’s dramatic)

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 7. Throughout the night: After a couple of hours at my house, we moved to the bar so the girls could actually experience being out in public with their ostomy

  • “Mine was empty and it was barely noticeable to me.” […] The only time I ever noticed it was when I went to the bathroom and had to remember to tuck it back it back into my pants. I almost ripped if off the first time!”– Lindsay

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  • “Going to the bathroom for the rest of the night was more tiring than usual because I wasn’t use to having the bag and would often forget it was there or try to pull it away from my skin.” – Sara

  • “It was just weird when I went to the washroom when I pulled my pants down I went to grab it because it felt like it was going to fall when my pants weren’t holding it up.” – Maegan

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  • “By the end of the night I felt really normal with it on, casually tucking it into my leggings after peeing like it had always been there. Although I’m sure that if it started filling I wouldn’t feel that way haha.” – Victoria [..] “By the end of the night it was interesting that people in the bar had clued in to us having bags (not sure if it was because we were talking about them in the bathroom, or maybe they saw us pulling them out) but someone even came up to us to ask us about it, which I thought was interesting (I’m sure the alcohol helped her with the courage to come up randomly).” – Victoria

  • “ I felt like I wore it proud which I can only really say is because of you. […] “I wasn’t afraid to whip it out in the restaurant.” – Bianca

  • “I found myself reaching for it throughout the night, almost as confirmation it was still there. I would temporarily forgoet, but then I would sit back down, or go to the washroom, or reach for something in my pocket and it would remind me.” – Michelle

 8. Removal: I didn’t help any of them remove their bags so this feedback was all from the morning after

  • “Taking it off was fine – but I only had it on for a couple of hours.” – Lindsay

  • “It also hurt to take off and I don’t have a stoma so I can’t imagine how much it hurts you.” – Maegan

  • “By far the worst part was peeling the flange off my skin. It is adhesive and stuck to my skin nicely but coming off was highly discomforting, my eyes teared up as I peeled it away from my skin.” – Sara

  • “When we got home I was scared to rip it off cause it started to hurt a little. So I asked Ry to rip it off quickly so it was done and he ripped the whole bag and the water exploded everywhere.” – Carly ….This conversation proceeded by me telling Carly I couldn’t believe she had kept the water in all night, and asking her why she hadn’t emptied it before taking it off, to which she replied, “Lmao I don’t know. I didn’t think of that.” – Carly

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  • “Mine stuck pretty well to me, and hurt coming off! But at least I had a good seal.” – Victoria

  • “I would say it hurt pretty bad to take it off.” –Bianca

  • “Taking it off was like taking off a bandaid, I had to do it quick so it wasn’t too painful.” – Michelle

9. Sleep: Only a couple of girls slept with their bags on

  • “I slept with it overnight and found to be a bit discomforting.” – Sara

  • “When I slept with it throughout the night and Bryan would put his arm around me, I feel like I always tried to turn or adjust his arm so he wasn’t touching it. I almost felt weird and uncomfortable or wondered what he would think if it was real!” – Sheileen

10. New Perspective:

  • “It was so helpful with my nursing practice! I feel like when I have patients who have ostomy bags now I am more understanding of what it feels like and it encourages me to discuss this with them and ask for their input about it. And what makes them feel more comfortable or any concerns they have. It was nice to see it from that perspective. I feel that I used to just go into the room and perform the necessary care that I needed to for these patients and I wasn’t really aware/ didn’t think about the emotional side of it and the body image changes or anything that they might have been going through!” – Sheileen

  • “Having seen yours a million times, and even helping you change yours in bathroom stalls, wearing one for the night brought a new appreciation to life with an ostomy.” – Michelle

11. Overall experience

  • Wearing on ostomy bag for the night was a very enlightening experience. It gave me a small, small glimpse into Stacey’s journey […] The whole night and education from Stacey was amazing. Learning the difference in sizes and what cutting needs to be done, different ways to wear the bag, the types of bags and clips that exist was extremely interesting and again just a small glimpse into the world of an ostomy.” – Meaghan

  • “I felt emotional wearing the pouch. It really made me stop and think about how this (because I don’t know) would effect your everyday.” – Lexie

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  • “For sure an eye opening experience!! And it wasn’t even real.. “ – Victoria

  • “It really is amazing to see how much education and personal experience that you express with it and share with people. I think it’s something that would help so many people going through the same things!” – Sheileen

  • “I’m so glad it exists.” – Bianca

  • “I had to hand out more of your cards because people were asking what was going on when they saw all the snapchats. Thank you for answering all of our weird questions and letting us get a tiny glimpse of what you do everyday!” – Michelle

For me, this experience only showed me how supportive people can be. 11 (!) girls offered to join in on this fun night and offered such good feedback that I can only consider myself extremely fortunate. Aside from them, all the other party guests, and people at the bar were nothing but curious, encouraging and interested in our fun night out. The girls, (and others) had tons of questions throughout the night that someone reminded us all that you would never even think to ask them unless you were actually participating in something like this. And imagine I wasn’t as open as I am to begin with? I think this whole experience only reiterated my point that being honest, open, and raw about what I’ve been going through has been the best method of healing for me, and I hope others can be too!

Girls: I can’t thank you enough. It was such a fun night (not a fun morning) and I’m so thankful I have you in my life who not only helped celebrate with me, but have been there for the past 2 years to help me carry my baggage.