This post appeared on IBD Baggage Claim.
The final surgery to create my J-pouch was in 2017 on February 17, 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 surgery I pitched the party idea to my friends and not one of the girls hesitated, in fact, more than I expected offered to wear an experimental system 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 the hashtag on my Instagram #bagmeup). I made it clear to everyone who participated in this experience for me (with me), that they needed to give their honest opinion as part of the learning process. So here it is… all the notes and feedback from a "non-ostomate" perspective.
“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 a bag. I feel like that would be uncomfortable, especially when it fills up.” — Lindsay
“I think if it was for real – and if I didn’t have a long shirt and dark pants on – I would be a lot more self-conscious of the bag showing through clothes." — Carly
“I was wearing a bodysuit when I arrived at the party and immediately wondered how I was going to put an ostomy bag on underneath my jeans and bodysuit. I began wondering of 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 it to outline the bag." — Sheileen
“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 leggings up over the plastic part attached to my body in order 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 on the bags and it was REALLY interesting to see how some of the flanges wouldn’t stick initially, which is probably why newer ostomates go through a trial and error period trying products from different ostomy manufacturers.
“The stickiness was amazing! I said I needed a backless bra with the same sticky strength!” — Lindsay
“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
“One 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
“I had a little bit of irritation on my leg sometimes with the bottom of the bag.” — Carly
“When I was driving home the sides of the pouch were scratching my skin a bit.” — Lexie
“Mine had trouble staying on. I can see how this would pose a very difficult issue. But it was not itchy to wear.” — Bianca
“By the end of the night, the pouch lost its stickiness.” — Lexie
“I was worried about my skin around the bag.” — Sheileen
“My skin was pretty red for the next two days, and a little bit irritated when I used any lotion or body wash.” — Michelle
Throughout the night I kept asking the girls how they were feeling. Most of them had forgotten they were even wearing an ostomy appliance.
“Another thing I found was how it was, in a way, it's awkward to sit down with the bag on.” — Meaghan
“At times I forgot it was there.” — Carly
“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 filling up the bag…
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 the whole time. Will it open once I sit down? Can people see the bulge that it makes? What would I do at someone else’s house if it opens and everything came out? What clothes will I change into or will I just have to go home? I felt worried when I was emptying it. I thought that it was going to get all over me. That just changed my entire mind set throughout the night. I was worried about it.” — 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 hers into my kitchen sink (weird, but okay), and then water spilled out everywhere. I gently reminded her that the splatter all over her shirt would not 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 actually experience being out in public with their ostomy bag.
“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 if 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 washroom. I went to grab it because it felt like the bag was going to fall when my pants weren’t holding it up.” — Maegan
“By the end of the night, I felt really normal with it on. It was interesting that people in the bar had clued into 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.” — 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 there.” — Michelle
I didn’t help any of them remove their bags so this feedback was from the next day.
“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
“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
“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. 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
“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 affect your everyday life.” – Lexie
“I’m so glad it exists.” – Bianca
“Thank you for answering all of our weird questions and letting us get a tiny glimpse of what you do every day!” – Michelle
For me, this experience showed me how amazingly supportive people can be. The girls (and others) had tons of questions throughout the night. 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. I can’t thank my friends enough. I’m so grateful for having them in my life, not only to celebrate but also through some tough times with my “extra baggage.”
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!