Enjoying Life in Minimal Amounts of Clothing - Uncover Ostomy
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Enjoying Life in Minimal Amounts of Clothing

It’s a common misconception that if you have an ostomy you are destined to live your life drowning in sweatpants.

Well, if you’re a little late to the Uncover Ostomy party, you may not have yet realized that I don’t live that life. 

I live fashion.

In the 10 years since I’ve had surgery, I’ve spent copious amounts of time mastering the art of clothing and an ostomy. I refused to let a little ol’ bag stand in my way of looking good. 

While I feel confident in my ability to dress fashionably with an ostomy, I’ve always had two female clothing categories that have kind of, well, challenged me: party dresses and bathing suits.

A number of years ago, when I joined my sorority, party dresses became a necessity that threw me for a loop. All the sexy, sophisticated, and unique dresses that I wanted to wear to the various semi-formal and formal events seemed to highlight, rather than camouflage my ostomy. Whether it be the material, the colour, or the amount of tightness, all the “statement” making dresses I came across didn’t seem to quite… well…work. 

I’m totally proud of having an ostomy and all (obviously), but the statement that these dresses made weren’t exactly the statement I wanted to make.

Eventually, as some of you may recall, after months and months of spending too much money, I built a comprehensive wardrobe full of fashionably sexy dresses. They not only kept my ostomy neatly tucked away, but they looked pretty awesome too. Even now, a number of years later, I’m still rocking the little black dress. The tight little black dress.

Me and my brother at his Fraternity Semi-Formal this weekend. Can you see my ostomy?

Challenging as it may have been, finding party dresses paled in comparison to the challenges I faced trying to find bathing suits.

Bikinis suck for any girl, but they suck a million times more when you’re trying to cover a bag on your stomach with an insanely small amount of fabric. It didn’t take long to realize that I needed to be creative when it came to bathing suits. 

I quickly discovered that boy-short bikini bottoms with a bikini worked, and that duo became my longstanding go-to bathing suit option for a number of years. There was enough fabric to cover my lower half and I could still wear a bikini top to get a decent tan. A few years later, when they came back in style, I started wearing high-waisted bikini bottoms, which worked quite well and  made me feel almost normal in swimwear. My most exciting bathing suit revelation was last winter when I discovered that I could wear a pair of regular, skimpy bikini bottoms with a band of bathing suit material around my stomach.

Well, that was my most exciting bathing suit moment until this past month.

This past month, I went into a bathing suit store in search of a new bikini top to replace one that I had lost. I scoured the store looking for a replacement, but couldn’t seem to find anything I liked. I then came across a bikini that caught my eye. I pulled it off the rack and thought that I would try it on for fun just to see exactly how much bag it would show.

And as if sent down from the ostomy gods themselves, the bathing suit, somehow, miraculously fit.

Perfectly.

The holy grail of bikinis.

Not one single modification necessary.

If you had asked me 10 years ago if I thought I’d ever be able to wear a tight dress or a regular bikini, I would have laughed in your face and told you that I knew I couldn’t. I would have said that it was an unfortunate circumstance, but that it was a small price to pay to be alive. I would have told you that it was a fate I was simply going to have to deal with.

Ha, yeah… I guess I don’t really “deal” with anything.

And neither should you.

I wrote this blog to start the conversation on clothing and the bag. It’s not an easy topic, and it can be fairly difficult for someone who doesn’t know where to start. I didn’t know where to start those 10 years ago, but with lots of time, research, and experimentation, I have been able to wear anything I’ve ever wanted to wear. This post is the place to start so that you too can wear whatever your heart desires.

So let’s get talking.

What is the most important thing you’ve learned about how to dress with a bag? What tips and tricks have you learned since you began your ostomy journey? What is your favourite article of clothing that you couldn’t live without? And what do you wish the doctors or nurses had told you about how to dress after surgery that they may have, well, uh, forgotten to mention?

Let’s help each other out.

Remember that time you thought you’d be stuck in “mom” jeans for the rest of your life?

Thank god it’s only a memory.

——————–

It must be noted: While what I have discovered works for me, it may not necessarily work for others. Whether it be larger or smaller, higher or lower, ostomies differ for everyone; as do the associated clothing options. So though the pictures above highlight how I am able to dress, it may not translate directly to you.

As well, if you prefer, you can send your questions my way either here, on the Facebook Page, or by tweeting to me at @JessGrossman. I will help in any and all ways that I can!

This post has been brought to you in part by shopping, in tandem with malls everywhere. 

Jessica Grossman
info@uncoverostomy.org
23 Comments
  • Lauren Beach
    Posted at 22:51h, 05 March Reply

    Okay, first of all I want to say how insanely jealous I am of where your ostomy is on your stomach. So lucky to have it be so far down you can pretty much pull off a regular bikini. I had my first ostomy surgery two years ago, and since then I have had two more surgeries. It started off as a temporary ostomy put in for emergency surgery due to a total bowel obstruction. Turns out it couldn’t be reversed and some of my colon had to come out two months later. Then after a year of dealing with a prolapsed stoma and ugly colostomy that was higher than my belly button, I finally had my third surgery two months ago when the doctors decided my colon didn’t want to be my friend anymore and had the whole thing taken out complete with an ileostomy. I have been super into fashion my whole life and I would definitely agree with you that this ostomy did not stop me from looking cute or wearing skimpy clothes on the weekends at college. I totally used to rock the high waisted skirt and rib cage.

    I would say though, you are able to wear a bathing suit much better than me. Not to mention my huge seven inch scar on the left of my stomach, but also my “frankenstein” scar as I call it where my first stoma used to be. Last summer I had to rock the one piece bathing suit which I felt totally stupid in at the beach while all my other 20 year old friends showed off their abs. Now that my ostomy is a bit lower I think I will be able to invest in some high waisted bikinis – thank god those have come back in style! Where did you get your bathing suit from because I love the top!!

    I don’t think anyone should feel that they can’t dress how they want to and hiding the ostomy is easier than it sounds. Plus, most people have no idea what an ostomy is, so they would never suspect that little bump on your stomach is actually a bag filled with poop! I think the best advice I can give to girls with ostomys is the ostomy secret bands. I prefer the swim wraps because they are skinnier and more of a silky material so tight clothing slips over them easily.

    Love your blog and glad there are other people out there going through the same thing as me!

    -Lauren Beach

    • Jess
      Posted at 23:11h, 06 March Reply

      So glad you love the blog – thanks!

  • Krystal Maher
    Posted at 23:23h, 05 March Reply

    Your stoma is so low! I’m jealous. My stoma is about level with my belly button. BUT, that doesn’t stop me from wearing pretty clothes when I want to. I rock a bikini with my bag fully visible, some people ask questions others assume it’s a bandage & it’s a great way to educate people. I’m thinking about sewing myself some bag covers that match my bikini this year since my opaque bags seem to be getting less and less opaque. When I was younger I’d wear long tankinis and my mom would sew skin colored fabric between the bust and the bottoms so if my shirt came up no one would see my bag. There’s some super cute one-pieces for this year. I’m thinking about trying this one http://www.zumiez.com/volcom-girls-waroses-one-piece-swimsuit.html it comes in a few different patterns and the cutouts are perfectly placed for where my bag is.

    I recently bought a really tight black dress. It’s skin tight but it has lace overtop so it camouflages really well. Chiffon shirts are really flattering. Scarves are great if you let them hang down your stomach. I’m honestly having trouble finding t-shirts that aren’t horribly thin these days. If anyone has any suggestions, please let me know! The unisex t-shirts at American Apparel are thicker but they’re ~$30.

    • Maureen Schill
      Posted at 00:53h, 06 March Reply

      I too am quite jealous of your location! I’ve had my ileostomies ( right, then left, back to the right after a disastrous attempt to relocate for better adherence using a tummy tuck approach) mine is 4cm to the right of the midline incision just a little south of my belly button. The high top bathing suit bottoms still reveal the top of my pouch. Tankinis work really well, but I’ve been rockin a one piece for 28 years. I finally started putting on weight was a solid 115-120 for years but I’m now at 150… Would like to drop 10 or 15. . But I wear asize 8 or 10 most of the time- cant find decent jeans though. Low rise jeans cut right across the bag and are pretty uncomfortable. Target pants in style #1 work really well. touched blouses and tops help conceal the pouch too, I don’t fret about clothes too much, if it looks stylish and feels comfy I wear it! Check out “Aw set my!” On Facebook they have a promotion going on right now for people sporting their bags…. Lots of photos with decorated bags, photos of bags also seen/ found on FB page “Girls With Guts”. There’s tons of sites out there, and lots of folks like us just trying to share constructive ideas for everyday life. Whatever you do… Try and form a team and participate in a CCFA “Take Steps ” walk this year- you will never feel so gratified as you do after doing it! I did my first one last year with family and friends and raised $1900.00. Did a holiday fundraiser for CCFA and raised $4200! I’m bound and determined to find a cure for crowns in my lifetime and I’m 53…. Hang in there everyone and remember YOU LOOK GREAT EVERY DAY , NO MATTER WHAT YOU’RE WEARING!

    • Jess
      Posted at 23:12h, 06 March Reply

      AA tshirts are the besssst. So worth the $30.

  • Heather Jensen
    Posted at 23:44h, 05 March Reply

    I have had my ostomies (colostomy & urostomy) for just about 6 years now. Of course, I don’t have the body that Jessica has (yes, I am a bit envious), but I still dress in clothes that I used to even before my operation. Nothing really changed…..except for the bathing suit. Both my ostomies are level with my belly button and I try to wear the high waisted bathing suit bottoms, but you can still see the top of my pouches, but I don’t really care. The only thing that bothers me is with my urostomy and how I get this unsightly bulge on my right side when the pouch fills with urine, and I feel like I have to drain it every 20 minutes or so. 🙂 But I’m not going to complain, it’s that operation that helped me live!!

  • Dana
    Posted at 23:45h, 05 March Reply

    Hey Jess! Thanks so much for this post. It really is important to talk about this–especially for women who are trying to love their new body! I am so grateful for all of your input on this topic!

    I’m coming up on a year of having an ileostomy (permanent) and I honestly am at the point where I’m like, “Screw it!” I’m gonna wear what I want! haha! I love my bikinis and I don’t want to be held back from wearing them anymore–however I do have a bikini wrap from Ostomy Secrets that I’ll be rockin this year to help that cause. I’m also going surfing next week in San Diego, so I’ll be testing it out then! 🙂

    It’s just funny that this was posted today because I just finished ordering a dress for a wedding this summer that is definitely form fitting. ( http://www.freepeople.com/night-out/sleeveless-medallion-slip/ ) I know it might not completely hide everything, but I’ve got some little tricks up my sleeve that might help. And if someone asks what’s going on on my lower right side, I’ll first of all, be surprised if someone’s really that concerned with how I look, and second, it’ll just be an opportunity for me to raise awareness. Then I’ll excuse myself to empty! 😉 haha

    You said it right, Jess, if we don’t want to, we don’t have to “deal” with anything! 🙂

    xoxo
    Dana

    • Jess
      Posted at 23:13h, 06 March Reply

      Thanks for the support!

      Love that dress, by the way. You’re going to rock it.

  • Chloe
    Posted at 23:59h, 05 March Reply

    you’re so lucky, ileostomies are so low!! it truly is AMAZNG how you managed to hide your bag with such a short skirt (it is soo cute though). i wanted to wear a bikini this year for the 1st time, but i cant even hide it wearing mid-riff shirts! how on earth do you hide it so well?? and i loved your dress too! dresses have been less of a problem for me; i love wearing tight dresses, but i always end of having to empty my bag alot when i wear them. any advice for that?
    and about your questions, ive pretty much worn anything most of my life, because ive had it forever. as a toddler my parents would dress me in EXTREMELY baggy dresses to hide it, and several tubes i also had in my stomach at the time. from ages 5-9 i wore tight, stretchy pants because my mom wouldnt let me wear jeans, and that became a HUGE challenge to hide it. but since i was 10, ive basically worn whatever i wanted to (within reason), without a care at all. but now, getting into my teenage years, clothing is becoming more of a challenge :/ i know you got your ostomy when you were my age, how did you cope?? im very interested!!

    • Jess
      Posted at 23:14h, 06 March Reply

      I am very lucky at how low my bag is.

      I am just able to hide it well because of it’s location and a lotttt of practice!

      I got my ostomy at 13 and just spent a lot of time shopping and trying on tons of different types of clothing until I figured out what worked!

  • Tijana
    Posted at 04:43h, 06 March Reply

    Jessica, this is an awesome blog. I still remember our conversations from that New York band trip years ago, and how much these issues bothered you. You have done an amazing job, and I highly respect you for putting yourself out there to help other people who have similar health issues. Keep up the good work.

    • Jess
      Posted at 23:14h, 06 March Reply

      <3

  • Sam
    Posted at 06:06h, 06 March Reply

    If I want to feel comfortable wearing something tight, I eat as little as possible. Not fun, but makes it a bit easier

  • Natasha
    Posted at 06:36h, 06 March Reply

    You look amazing! My stoma is too high for a bikini but I discovered some great monokini’s a few years ago. Excellent alternative to a bikini for us who are not that fond of a one piece swimsuit!

  • Klara Strandberg
    Posted at 07:18h, 06 March Reply

    I rarely ware pants at all. That is my way of being comfortable with my ileostomy. I almost always have dresses on an I love that fashion has so many variations today and that high waisted skirts and pants are in stores! I usually ware tights with the pouch tucked in and high waisted underware to keep the pouch in place.
    When it comes to swim ware I haven’t gone towards bikinis yet. I have a 22 cm vertical scar that has to be protected from the sun at least one more year. I am rocking one peice bathing suit, 50s style! There are a massive amount of cool one peice bathing suits out there, just ware it with pride!
    As a note, I tell people about my ileostomy and is really open about it which makes it easier when I want to sauna or swimming.

  • Leah
    Posted at 11:46h, 06 March Reply

    Hi Jess,

    I applaud you for talking about these issues so openly, it’s very inspiring.

    I have not yet managed to bite the bullet and actually go swimming, and it’s been 8 years. I’ve paddled in the sea a few times but never been to a pool. Consequently, though I promised myself last year I would, I’ve not even tried to find any swimwear yet. Maybe this’ll be the year I do it? I am not fortunate enough to have a low stoma so a bikini would be out (unless I had my own beach, in which case I wouldn’t care!!) but I’m sure a regular swimsuit would be ok.

    In terms of clothing, I’ve not made a lot of alterations to my wardrobe apart from investing in as many pairs of American Apparel high waist leggings as I can afford. They cover everything and you can dress them up and down really easily and a few body suit leotard things (definitely the ones with an opening at the gusset, otherwise it’d be a total nuisance) so that I can wear low cut jeans without worrying about everything being on display. I love jeans so much but they’re not the easiest thing to wear, especially as they don’t tend to have elasticated waists (did once try maternity ones, but they were really chunky and actually made the bag MORE obvious) but with an all in one thing on I can wear them if I want to. It just looks like a second skin and covers up everything, and from the top they just look like a vest. I did try vests but they always ended up rolling up and not really doing the job properly. Dresses and tights and leggings work really well, though I find the more surgeries I’ve had (3 open) the harder I find to wear anything tight on my waist. I don’t know if this is a common thing or not? After about half an hour I can’t wait to get them off, though it’s easier with leggings as they’re softer. I’ve got some tighter things and as long as I empty regularly, during the day there’s no reason not to wear them. If I go out at night, I admit I do tend to wear things that are a bit looser, just so I don’t have to be worrying unnecessarily and have it ruin the evening. But there are so many nice, floatier dresses around. I don’t really have the figure for body-con type stuff so dresses with a proper waist, more of a 50’s style I guess tend to fit better and they’re not restrictive over the stoma at all.

    I think with clothes you just have to experiment as much as you can and be creative and when you find something that works for you stick to it. And also you can accessorize an outfit with a good scarf or bag or whatever, I love a good scarf because it can also hide your tummy if you need to for any reason. It’s a bit like a comfort blanket for me, lol.

    Anyway, thank you for your blog and having the courage to talk about things so openly 🙂 You look fantastic!

    • Jess
      Posted at 23:15h, 06 March Reply

      Thanks so much!

      Sounds like you’ve got some really good tips. I may have to try some of those out…

  • Pewick
    Posted at 11:58h, 06 March Reply

    I must say you show great strength and demonstrate great pride. I’ve had my ostomy for over twenty years now and still struggle with many of its restrictions. You inspire me in many ways, Thank You!.

    • Jess
      Posted at 23:16h, 06 March Reply

      Thank you!

  • Natalie
    Posted at 21:41h, 06 March Reply

    Love the bathing suit. Great find. My stoma is low, but not that low. I have worn a bikini, but feel a bit more comfortable in a one piece. Patterns are my friend, I have discovered. Whether it is underwear, bathing suits or dresses, patterns hide a lot of flaws, wrinkles and bumps.
    I haven’t made too many changes to how I dress. I avoid low-rise pants, but as someone with narrow hips I never wore these a lot anyway, as they just don’t flatter me. Control top pantyhose are great for smoothing things over – I have been known to cut the legs out of old pairs just to make a cheap & easy ‘girdle.’
    Love what you are doing with this site, keep it up.

    • Jess
      Posted at 23:16h, 06 March Reply

      Thanks, Natalie!

  • Sonja
    Posted at 12:02h, 10 March Reply

    Thank you, it’s great to feel like part of a group, especially one that understands! Here’s what I do: For intimate times with my husband I have a wrap from Ostomy Secrets which I absolutely adore. It makes me feel confident and I’m not thinking about whether he accidently touched it or that it’s in the way. For a one piece bathing suit getting a print will disguise the bag but I wear a tankini with a skirt for the bottom. There is a variety of skirts now and I love them because there is two layers of fabric to conceal the appliance. As for dresses I have underwear from Ostomy Secrets and they work great! I even forget I have an ostomy sometimes, I think of it as my “ostomy holiday” which always brings me joy.
    After a year of having my ostomy I realized one day that Iove it. It took pain away and has enabled a wonderful quality of life. When I was recovering in the hospital my Mom told me something amazing, to make sure I love my ostomy because it is a part of me now and I should love ALL the parts of myself. It was game changing advise for me. Thanks Mom!!

    • Sonja
      Posted at 12:25h, 10 March Reply

      Before when I used a clip for my bag I would make the clip discreet by aligning the curve of the clip with the curve of my pubic bone for swimming. It was quite comfortable, I would forget it was there.

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