Do I Even Care About Hiding My Ostomy with Clothes?

So, I'm about 4 weeks into having my ileostomy, and I'm starting to get back on my feet and go places. This necessitates a new wardrobe, both because I have no winter clothes and because, as an 18-year-old girl, I have a lot of little stretchy clothes that don't really work with an ostomy. I'm mostly looking at sweaters in the stores, since it's cold outside and sweaters are really pretty :). But it's actually really hard to find tops of any sort that aren't either really tight or too short to cover my pouch fully if it hangs down. My 9" pouch hangs to just the hem of a lot of shirts, so when I sit or raise my arms it sticks out. So here's what I'm starting to ask myself: Do I even freaking care? The people I spend time with are going to know I have an ostomy, and strangers can think whatever they like because I'm never going to see them again. I don't dress so that other people won't be bothered by the sight of me. What if I had something wrong with my face? Should I wear a bag on my head?

That sounded highly indignant. Anyway, I'm not talking about wearing the same tiny clothes I (sometimes) used to, I just don't want to obsess over whether my pouch is completely entirely hidden at all times. I can put a cover on it or something if seeing the clip is too much for people. In any case, the pouch shows under most shirts when it begins to fill up, giving me a bulge over one leg so I'm weirdly asymmetrical. I've tried wearing it sideways, but I find that *very* uncomfortable, and then when it starts filling up I look pregnant, which is way more embarrassing.

In spite of all my tough talk, I kind of don't think I'll be able to comfortably wear anything but the six or so long, loose shirts I've found that don't show my ostomy at all. It would help a lot if I didn't strongly suspect that seeing the pouch bothers my *family*. I have to live with these people, and I feel like I have to hide the pouch even around my house. When I have my own apartment, I'm wearing whatever the hell I want to at home, but I'm not there yet. So now I wonder, to what lengths do other ostomates go to hide the pouch? Am I actually responsible for making sure other people are comfortable around me, or is that their job? One thing I do know is, better that this happens to me than to some of my friends who TOTALLY couldn't deal with it all. In some cases, their entire identity is wrapped up in (skanky) clothing, (no judgment cause I don't care what they wear but it gives you an idea), and they would sink into an all-consuming depression if they no longer matched their friends when they went to parties. I never matched anyway so whatever. That sounds harsh. I love my friends. They'll be cool about this because they were fine when I had no hair and my entire body was raw peeling skin. So I should shut up about their clothes. The fact that I'm obsessing over clothes in the first place is a good indicator that I've resolved all my real problems for the time being. But I feel like I've got something to prove, and that I won't have fully recovered as long as I'm limited to a wardrobe that doesn't even have an outfit for every day of the week.

Nobody has to care about my rambling, which I would write in a private diary if the internet didn't encourage us all to broadcast our thoughts, but if somebody does read this I'd be interested to know how they felt about concealing their ostomy and if they had an easier time finding clothing than I do. I'm going to stop before I write a novel here. Peace :)

Good day, Lucky Frog. I am about 5 months out from my surgery. I have been able to wear almost all of my clothes. I work at a hotel as a desk clerk and the guests do not know I have a bag underneath my clothes. I thought it would be an issue, but it's not. I make sure to empty it every couple of hours, but that is all I worry about. When you are more comfortable with yourself, you will find that your clothes will fit okay. There are belts that you can buy from Stealth Belt Company that will help hold the bag and hide it even while swimming. Check their website. I hope that this has helped you some. Please drop into the chat room, there is always someone willing to give other pointers on anything. Welcome to the group. Squeak, aka Linda.

Hello luckyfrog. I really enjoyed reading this post. For me it shows a great personality and someone who works things out for themselves without being tied to the dubious 'fashions' of others. There are some neat little stoma-guards that allow the output to drain whilst you can wear a fairly tight hernia-belt. I found this pulled 'everything' in far enough for me to wear all my old clothes and the stoma-guard hardly showed at all. I too was never in fashion but I don't like having to buy anything new if I don't have to.Best wishes Bill

Hi Luckyfrog, I can't really comment on the latest fashions for 18-year-olds, but having had my stoma for 14 years, I have found by trial and error what works and what doesn't. I tend to wear trousers more than skirts as I don't like the feel of the bag hanging, but find if I do wear a skirt, tights (pantyhose?) hold it in without restricting it. I wear a lot of patterns too as this detracts from the bulge. Lighter colors too show the shape of it more than darker colors. I think that the majority of people who don't know you have a bag won't see it as they won't actually know what they are looking for, and as for your family, they will come round when they see what a strong, capable young woman you are at handling it all. Unfortunately, we can't get away with lycra anymore, but for some of us, that's probably a bit of a relief lol. Experiment and see what works for you. Good luck. Karen x

You ask an interesting question when wondering the lengths to which people go to hide the pouch. I'm two years out from surgery, and at first I would do whatever I had to in order to ensure no one knew I had an ostomy. I was embarrassed by the possibility of the pouch bulging under jeans, the odor when I had to empty, etc. I just didn't want to be viewed as different. Fortunately, I got over that, and now I'm to the point where I really don't care if folks know I have an ostomy or not. I change at the gym like I did before. When I swim, the top of my pouch sticks out over my swimsuit and also my triathlon shorts. (You can see it in the picture of me running flashing the hang loose signs). I have yet to have anyone ask me about it, though I would imagine some are curious. So I guess to sum things up, for me, I no longer go to special lengths to hide the ostomy. It was a gradual process, but really the only way to go in my book. You'll get there. Cheers, Dave

My Ostomy Journey: Kimberly | Hollister

Thanks for the input, you guys. I'm probably going to buy a belt or two for physical activity, but in general, I find wearing the bag in that way to be uncomfortable on my stoma as the bag fills-- don't know why-- and I find emptying it sideways to be incredibly annoying. But I really need an exercise regimen after being incapacitated for months, and a Stealthbelt or whatever seems like a good option for that. Karen-- Skirts and tights are something I'd like to try this winter, but I'm gonna have to search a bit because band-aid skirts are in right now, and as far as I can tell, the name refers to how they fit like one. Right, that's precisely what I don't need right now. And Dave, I'm interested to hear that there are indeed people who don't feel like the ostomy is something they need to hide (aesthetically, that is; I know plenty of people who are quite willing to tell anyone and everyone about theirs). I quite often think nowadays that it would be nice if there was greater transparency about this sort of thing in society, so that I would get "Oh, okay" reactions more often than "OMG WTF THE HORROR." I'm not surprised that people don't actually comment when they see you, though. Avoiding awkward conversations with strangers is high on most people's list of priorities :)

Is your ileostomy lower than your navel? I scrapped the belt idea and cover my bag with my thong and let the bottom out. One thing I do is empty the pouch at least once an hour. It helps with the bulge.

It is below my navel. I can't empty my pouch that often, though, because I take too long with it. Do most people hang their pouch inside the leg of their pants? I think what I've been doing might be somewhat unusual: my stoma happens to be located right behind the waistband of all my jeans, so I cut sections out of the waistband around the flange, and the wafer goes under my jeans and the bag hangs out.

Hi there lucky frog. I very much enjoyed reading your blog and find it hard to believe that you have only had your ostomy for only 4 weeks, but already you seem to be coping very well. I haven't really bought any new clothes as I am still putting back on weight which I lost in the hospital (about two stone in total), although I have had to buy a couple of things. I tend to go for things that I am comfortable in and will cover the ostomy. But when I'm at home and sitting comfortably on the sofa, sometimes you just can't help it when your top rides up and the bag sticks out the bottom. I would say don't worry if it does this and no, it is not your job to cover it so other people feel comfortable! Just wear what is comfortable for you, whether it shows or not. If you're comfortable with it showing, then wear whatever the hell you want! I admire your attitude and am glad you are doing well :) x

The below site has some good ideas for adjusting the clothes you already have (which sounds like you already have, so well done!) http://www.stomaatje.com/clothing.html

Hi Lucky... I know that I hang my bag through my underwear and yes, I try to hide it inside my pant leg... However, when I first had the bag, I often thought of myself as a chick with a dick... I don't know how men can stand to have that thing between their legs... Guess that's why they constantly adjust.

Clothing: My latest discovery is maternity jeans. Some of them look just like regular jeans but have an elastic top - where my bag is. Depending on where yours is, these may work great for you. I don't have to wear a very long sweater, just long enough to cover the elastic part (get elastic the same color as the garment). Try Motherhood Maternity. Also - I wear elastic waist skirts (or long sweaters) with loose leggings boots. The skirts I like are the tiered ones with the wide elastic. Old Navy had some, Target does too. If I think of anything else, I will write again. If you want to talk over the phone, please call - I have been around the block a thousand times on this.

Thanks, HappyGirl!! I love skirts so I'll look into what you've described. Jo, I checked out that website; yeah, the way she alters her pants is similar to what I've done, but maybe if I try it her way and wear the pouch inside the pants it will be easier to find shirts. @moonshine-- Lol, I don't think I ever thought of it quite that way before. Luckily when I'm just sitting around the house I'm not constantly worrying about how things are positioned-- only when I'm walking around in public :P

Oh geeze, how could I forget this website - Ostomy Secrets? If you have never visited, treat yourself. I bought a garment for a wedding I had to attend that not only has a pocket for your pouch (left or right), but it also has a slight ability to hold in your stomach and pouch.....

Hey! I'm still fairly new to this too. I've had Crohn's for almost 17 years before finally getting a colostomy. I tend to go for more fitted pants/jeans and lots of oversized/off-the-shoulder sweaters. The off-the-shoulder just makes it feel a little more feminine rather than big and baggy all the time. As far as bandage skirts... I will have to post a picture for you! 6 months out of surgery, I turned 27, which is also Valentine's Day. I wanted to go all out considering what I had been through. I wore a hot pink bandeau (bandage) skirt with an off-the-shoulder, oversized black sweater! I wore an Ostomysecrets lacy wrap underneath and it all worked out perfectly! No leaks and no one saw a thing!! I'm still learning to navigate my closet without getting a new wardrobe, but there are definitely a few things that are in the donation pile... Good luck.

Oh yeah, and clothing has been made easier when I wear the bag inside my jeans. I typically put the wrap on over the bag then pull my jeans up and my top on over it all. The only time I have a hard time with this is when I have a day and have a lot of output, then sometimes I take the wrap off and free up some room...

Hi luckyfrog. I'm a very petite girl (112 lbs) and before surgery, I wore very form-fitting clothing. I can no longer wear any of my jeans, and that sucks! What I did was went out and bought a bunch of form-fitting stretchy pants and pulled them up over the bag. It keeps the bag really secure, but it does show the bulge when it fills. I also bought a few tops that sort of flare out at the bottom and are tight up top, and most times you can't tell I have a bag. And it looks cute! Hope that helps.

Hi Lucky! I teeter between petite and regular length sizes, and upon getting ready to return to work (ostomy was on Sept 18), I finally got up the nerve to try on my closet clothes and set some aside that won't work in my opinion. I found that frequently the petite sizes were too short, so perhaps if you are petite, try out some regular-sized stuff. I am definitely no fashionista and never have been, but I did find luck shopping the other day. I went for patterns and shirts that gathered at the top with some pleats or folds - they all distracted from the waist area. I also got some really pretty sweaters to layer over the bulge. I finally worked up the nerve to try all my jeans on too (I also was thinking about getting some maternity stuff) and lo and behold, I can comfortably use one pair. The rest are too large from weight loss or too uncomfortable on the waist (mine is at the waistline also). I eventually started to put my bag on the inside of my pants on some pants. It's been a process, and I believe if you keep up your current attitude, you too will find that more of what you have might work, and a little shopping for patterns and distraction shirts will do the trick.

Check out Uncover Ostomy - it's really encouraging!

Thanks for the advice, everybody. I really want to look into maternity jeans, but have been reluctant to shop for them because then I look like a pregnant teenager. Grr. Talk about something people really judge. And I look years younger than I am in the first place... Seriously, I have become a major advocate of people minding their own damn business.

On a related note—though I've seen Uncover Ostomy and it's a very interesting idea. Some people complain about the sexualized imagery, but they're missing the point. Body image is very important to ostomates, and getting other people to realize that a bag is not an impediment to intimacy would be a huge accomplishment. I'm still getting over the irony of remembering that, about 3 years ago, I was refusing to wear a two-piece swimsuit because of my tiny scars from laparoscopic surgery. What an idiot. This past summer I had decided it wasn't such a big deal—right before I went and got my freaking intestine pulled through a hole in my stomach. Starting process over...

Tiny Scars... My scar (because of septic shock) left me with a 2-inch deep and 6-inch long scar... Jello shots in the navel... LOL, you could put a pint of Jack Daniels in my scar. I would like to decorate my scar with bling-bling... Let's embrace ourselves. Actually, I thought of skin-colored bandages.

One of my old scars is exactly the length of my index finger, though not deep, and putting my finger over it has become a nervous habit. Now it is covered by my wafer. It's weird how much that annoys me.

My scar isn't deep but it's really long. Swarovski makes some gorgeous crystals that we could glue all along the length of our scars so that when we drop our drawers to people who give us grief (as moonshine advised in another thread) they'd be decorative!

I like that idea - I would think of piercing my scar as some do belly buttons, but I am afraid of infections as sepsis is the reason they took out such a big chunk of necrotic tissue.

Hi, I am new here. I just had to have emergency ileoscopy surgery. It was my 3rd surgery, and a month in the hospital. I am hoping someone can help me because my bags won't stay stuck to my skin. Once I have a movement, it leaks right through the glue. I have nurses coming, and no matter what we try, it doesn't hold. My nerves are about shot dealing with this problem, and many of my clothes are getting ruined and stained. We use barrier and glue, and it still leaks through. Also, my skin is very sensitive and getting raw. So, I am hoping maybe someone can give me some suggestions if they have had the same problem? I am desperate for help. And to some of your posts, don't be ashamed. It was something that was better for your health. I almost died a year ago from diverticulosis attacks. I had three in only three years. I did the surgery so I would no longer have to worry about another attack. But, there were complications, and now this ileoscopy. I sometimes regret doing it, but mine will be reversed in 3 to 4 months. And also in reference to clothes, just wear bigger clothes. Who cares what others think? It's your health that matters. And blessings to all who had to have this or coloscopy surgery. Just need some ideas to help keep the bowel from getting on my skin, and a way to keep the bags on longer. Thanks.

I so had a leakage problem, which led to my medical leave from work and disability... My skin was so raw at one point I could not put a bag on. I use stoma powder when raw, then pat it down with barrier wipe. I use Hollister medical adhesive spray, let that set, then use a stoma ring as sort of a gasket. Use adhesive paste around stoma opening in bag, like caulk... Hold all as tight as you can to skin and hold for 60 seconds... I can get 7 days on a single bag.

We have tried the adhesive paste. I have also put it around the stoma just like a gasket. I would use about the size of the tip of a pinky finger, and still get leaks. How could you stand the products with such raw skin? I jump; it hurts so badly. Now, we also use the adhesive spray. It just seems there is a lot of acid in my system, and it just eats away any adhesive. Also, I don't know how far your stoma sticks out. Mine's almost flush with my stomach. It doesn't protrude but maybe 1/8 of an inch.

Inch

I use a convex bag. My stoma maybe sticks out about an inch. However, the opening points down so the convex bag holds it up. Do you use stoma powder? I use the rubber rings, which helps with leakage. I was told that because of the ileostomy coming from the small intestine, it is full of acid and digestive enzymes, so yes, it will burn the skin. I change the bag and shower to make sure none of the output is left on your skin. The stoma powder I use is from Hollister, and it heals quickly. Do you have access to an ostomy nurse?