This post appeared on IBD Baggage Claim.
The final surgery to create my J-pouch was in February 2017, and my life-saving stoma was closed. To celebrate the past year and a half as an ostomate I threw a "Farewell Stoma Party" to teach my friends about ostomies. What better way to say goodbye to my ostomy bag than making 11 of my girlfriends WEAR one for an entire night!
A few weeks prior to my surgery, I pitched the party idea to my friends and not one of the girls hesitated, in fact, more than I expected wanted to wear an experimental bag and some even asked ME if they could join in. I had responses like, “I’ll do it!” and “Love it,” and “Yep, bag me up!” (hence #bagmeup). I made it clear to everyone who participated that they needed to give their honest opinion as part of the learning process. So, here's some of the feedback from "non-ostomate" perspectives.
“I was wearing leggings and a loose top so I think that helped. I can’t imagine wearing jeans or a tight top. I feel like that would be uncomfortable, especially when the bag fills up.” — Lindsay
“If I didn’t have a long shirt and dark pants on, I think I would be a lot more self-conscious of the bag showing through my clothes." — Carly
“I wore a bodysuit that night and immediately wondered how I was going to put an ostomy bag on underneath my jeans and bodysuit. It made me think about what kind of clothing would be appropriate to wear.” — Sara
“I changed my outfit 3 or 4 different times because I wasn’t sure if my clothes would cover it up. One outfit was too tight and I didn’t want an outline of the bag to show." — Sheileen
“Normally I wear loose clothing, so having the bag under my clothes didn’t bug me. But I did feel the need to pull my leggings up constantly to cover it up as much as possible.” — Victoria
“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
I helped everyone put the ostomy bags on and it was REALLY interesting to see how the wafers wouldn’t initially stick on some. When I was a new ostomate, I went through a trial and error period with different ostomy manufacturers.
“Mine had trouble staying on. I can see how this would pose a difficult issue, but it was not itchy to wear.” — Bianca
“The stickiness was amazing! I said that I needed a backless bra with the same sticky strength!” — Lindsay
“One thing I was most surprised by was how sticky the seal was on my skin, which makes perfect sense as it would need to be.” — Meaghan
“The adhesive part didn’t really stick, so I was frequently pressing the bag down. Afterward, my skin was red and a bit irritated for a few days.” — Michelle
“By the end of the night, the pouch lost its stickiness.” — Lexie
Throughout the night I kept asking the girls how they were feeling. Carly and most of the others had forgotten they were even wearing an ostomy system.
“Another thing I found was how, in a way, it's awkward to sit down with the bag on.” — Meaghan
“Pretty comfortable. I didn't notice it too much after an hour or so.” — Bianca
“At first it felt very weird! I constantly had the urge to hold the bag against my skin to make sure it stayed there.” — 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
On the bag full…
I had a couple of girls fill the ostomy bag with water so they could feel the weight of it on their body, and how to empty it.
“When I filled the bag up, I felt like I had so many concerns. Will it open once I sit down? Can people see the bulge it makes? What would I do if it opened and everything came out? I felt worried when emptying it and thought it was going to get all over me. The bag full changed my entire mindset.” — Sheileen
Carly forgot to empty hers and wore the bag filled with water all night… which turned into a difficult moment when she removed the appliance from her body.
Sam asked if she could empty it in my kitchen sink (weird, but okay), and water spilled everywhere. I reminded her that the splatter all over her shirt wouldn't be water had this been a REAL ostomy. To which she replied, “This is traumatizing!” (she’s dramatic)
On being in public...
After a couple of hours at my house, we went to a restaurant so the girls could experience being out in public with their ostomy bags on.
“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 in my pants. I almost ripped it off the first time!” — Lindsay
“Going to the bathroom for the rest of the night was more tiring than usual because I wasn’t used to having the bag. I 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 bathroom. I went to grab the bag because it felt like it was going to fall off if my pants weren’t holding it up.” — Maegan
“By the end of the night, I felt really normal with it on. Someone even came up to us to ask us about it, which I thought was interesting.” — Victoria
“I felt like I wore it proud, which I can only really say is because of Stacey. 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 on.” — Michelle
I didn’t help any of the girls remove their ostomy system, so this feedback was from the next day.
“By far the worst part was peeling the flange off my skin. The adhesive stuck nicely but coming off was highly discomforting. My eyes teared up as I peeled it away from my skin.” — Sara
“I was scared to take it off because it started to hurt a little, so I asked my boyfriend to rip it off quickly. He ripped the whole bag and the water inside exploded everywhere.” — Carly
“Mine stuck to me pretty well and it hurt coming off. But at least I had a good seal.” — Victoria
“Taking the bag off was like taking off a bandaid. I had to do it quick so it wasn’t too painful.” — Michelle
“Being a nurse this was so helpful. I feel like now when I have patients with an ostomy, I'm more understanding of what it feels like. I didn’t really think about the emotional side of it and body image or other things they might be going through.” – Sheileen
“Having seen your bag a million times and even helping you change it in bathroom stalls, wearing one for the night brought a new appreciation for your life.” – Michelle
“Learning about the sizes and what cutting needs to be done, plus different ways to wear it, and all the types of bags was extremely interesting. Just a small glimpse into the world of an ostomate.” – Meaghan
“I felt emotional wearing the bag. It really made me stop and think about how this would affect everyday life.” – Lexie
“I’m so glad it exists.” – Bianca
“Thank you for answering all of our weird questions and giving us a tiny glimpse of what you have to do every single day.” – Michelle
Being honest, open, and raw about what I’ve been going through the past few years has not only helped me heal but educated others too. This experience showed me how amazingly supportive people can be. I’m so grateful for having close friends, not only to celebrate the good times but also through the tough times with my “extra baggage.”
p.s. I also wanted to share that I had several boxes of unused products that were donated to Friends of Ostomates Canada. I would never throw away the ostomy supplies I no longer needed since I can definitely appreciate the costly expense behind them!