Ostomies and Bikinis????

Hi! I have Crohn's disease and I also now have an ileostomy. I swim all of the time...have my own pool.

I just saw this article and thought some might be interested in it. This gal has it all together!

http://www.people.com/article/bethany-townsend-bikini-colostomy-bag-crohns-disease-inspiring-viral

Sherrine

      I saw her on Fox News (Philadelphia station) yesterday morning.  Believe it or not....I thought all her tattoos were more distracting than the ostomy bag.

I thought the same thing. Personally I wouldn't wear a bikini, I wouldn't want people to run in horror thinking someone dressed up a beached whale! But I think if anyone feels comfortable then that's great.

I think its a mucousal ostomy. We were talking about it in the "is that you Embers..." post.

Im excited this girl is getting so much attention right before my ostomy surgery. My family all knows what it looks like to have a bag now!

:)

But show up on the beach like that, I dunno. Trying to bring awareness. Why do I need awareness. Who is aware is aware and who is not doesn't need to be. I mean, there are probably conditions that we don't know about. Do I really have to know all of them.

Exactly, dude.

I've never understood this obsession with raising 'awareness' of IBD. (I'm sure it applies to other diseases too, but I'll stick with the disease I know and love to hate.) Why do I need the general public to be more aware? What difference will it make to me? My own family don't know/care about what I've been through, why on earth will total strangers understand any better? Total strangers don't give a toss about our disease. They'll "like" a pretty girl with an ostomy bag on Facebook, say a few meaningless words about being "inspired xxx", and then go away and never give IBD another thought.

People's understanding of IBD is shallower than a puddle. I was lectured on a different thread about not accepting the status quo, but here's an example where I accept the status quo without reservation. Of course people who don't have our crappy disease are not gonna be interested in it. Why should they be? I had absolutely no interest in, or awareness, of IBD until the day I got it myself.

If my last post made it seem like I am against people talking about their disease, then I didn't mean it like that. I'm fine with bloggers. I like blueheron's blog and can even see how it might even be inspiring to those with an ostomy. It's nice to know as an ostomate that your physical life isn't over; that you can go mountain-climbing, running, etc. Even I have derived comfort from that at some point.

Got absolutely no problems with people talking about their disease; sharing experiences, tips, info, and so on. The internet has made it so much easier to reach out to other people who have the same condition as you do, which is a good thing. What I don't see as a good thing is the obsessive drive to raise "awareness" with the general public. I think IBD groups and charities get far too waylaid by this, instead of just concentrating on the actual people with the disease.

     I have to say I am with Somedude on this one.  Why advertise?  I feel it is something personal....like whipping out a boob in public to breastfeed.  I breastfed my youngest daughter for the first 13 months of her life.  I went out in public many, many times, but whip out my boobs...nah...not necessary.  Today, there are more places to be discreet.  More than they had 37 yrs ago when I breast fed.  At the beach, I would place a beachtowel around my shoulders, undo my bathing suit strap and let her at em...didn't draw any attention, as well it shouldn't.  My opinion, just sayin.

I completely agree with everything rabbit posted above. She wasn't looking for attention, she just wanted to be comfortable, decided not to GAF and the story got picked up from there. Personally, I'm also a little self conscious about it (and wear clear bags - if I ever did grow the balls to post a pic of myself shirtless I'd at least wear an opaque one) but I say good for her. I certainly don't think its the same as showing a breast or any other part of the body we typically cover up (which is an entirely different discussion).

As far as "raising awareness" goes - I agree, most of the time it's empty and impersonal likes on a Facebook page or a retweet and people think they're truly helping the cause.

However, I do think that there is good that comes from more people being aware of things, even if it is for that split second they take to hover iced the retweet button. Just look at some of the comments the article generated. Of course there were those saying it's "disgusting", she should keep it private, etc. but there were also many "normals" defending her who also talked about family members they have who wear a bag because of chrohns, UC, or colon cancer, etc. who often feel more ashamed than they (the "normals") feel they should.

Even more, there are comments from people saying they had NO idea these diseases and outcomes were even a possibility and how horrible they must be to go through, etc. Of course they don't know the half of it, but being cynical about it and scoffing at their lack of knowledge and how they'll never TRULY understand what it's like to go through this is not going to help at all - especially for people holding out for a cure.

The point I'm trying to make is that it's a butterfly effect. Sure, millions of people viewing this story and hundreds of thousands of likes might not directly affect any single one of us here. And we probably won't ever see any answer that will be directly linked back to this one moment in time.

But the more "awareness" and the more that these topics enter mainstream conversation it will lead to more money funneled into research, more doctors and organizations and people interested in different research and theories trying to come up with better solutions. Even if ten people out of the millions who have read this story decided to donate money, or go into medicine or think about better bag set ups - whatever - it's still ten more helping and thinking about this than were a month ago.

If a cure is going to come someday, I highly doubt it's going to be figured out by someone in the small unfortunate pool of people who are actually afflicted with Crohn's or UC. It's going to take outside resources and people.

Her story was all over social media so she accomplished what she wanted to do. People are talking about it hence awareness!

NiceCupOfTea said...
There is no way that IBD is ever going to enter the public consciousness in the same way that cancer or AIDS has.

Of course it's not. And there is really no use in even comparing the three (well, unless you want to discuss immune system research in general or the like).

But again I go back to the point that a little something here and there is better than nothing.

NiceCupOfTea said...


I don't particularly care if somebody displays an ostomy bag on the beach, so long as it's empty. (Because when it's full, it contains faeces. If it should leak, that won't be a pretty sight or smell.)

Well, using that line of thinking, then you don't think anyone with a full, or even partially full, ostomy bag should be on the beach? Whether it is showing or not, most bags WILL contain feces if the person is away from a toilet for more than a few hours. A bag could leak at any time, whether it is on "display" or not....at the beach, the store, a restaurant, the park....ANYwhere. Just like a diaper on a baby, or an adult who needs to wear them, could leak. I don't see what your statement has to do with wearing a bikini.

I have worn a takini with boy shorts on the beach a few times since getting my ileo....and I must say, it's kind of a pain in the butt to keep it tucked into the bottoms and keep the top draped over the bag just right. So much so that I've thought about just wearing a regular bikini, because it would probably be easier. I wouldn't be doing it to "raise awareness", but because it is how I think I might be more comfortable and able to enjoy my time on the beach. I see no reason I should have to feel like my bag should be hidden.


And yes, her 2nd smaller bag is for a mucous fistula, which is sometimes necessary. You can google it to learn more.

http://www.buzzfeed.com/rossalynwarren/the-woman-who-posed-with-her-colostomy-bag-has-inspired-hund

This is what happened as a result of Bethany's photo going viral. Yes- "normies" liked the page and wrote sentimental junk about inspiration and blah blah blah. This is fine- I actually disagree with most of the sentiment of this post and think that awareness is ultimately the best thing. Awareness is positive movement in the right direction towards acceptance. BUT the important thing about Bethany's photo is that other people with IBD and bags have found the courage to follow suit!

I don't care what other people think about my bag- most people I know and work with know about it! I frequently make jokes about it. We had a party on the 1-year anniversary of my surgery: it was my No a--hole Party. We had a--holethemed favors and a butt cake. (Humor is my survival mechanism if you couldn't tell.) As I like to tell people- I may BE an a--hole, but I don't HAVE an a--hole.

But I do care what other people with ostomies think about themselves!! If the pic of Bethany going viral caused even ONE person to feel like a human again when they didn't before, or to feel a little less insecure with something that no one else can understand unless they have IBD/Ostomy, or just stop giving a nut what other people think then this is positive.

I personally don't think there will be a cure- I feel IBD is more likely something we will be able to figure out how to manipulate the genes to avoid (like a vaccine almost) and prevent, but probably not cure for those of us unfortunate enough to get the disease. I hope for something like a vaccine (if you will) to save the future generations of my family from this horrid disease. But I live in reality and know even that is way off into the hazy future. However, if 1000s of FB likes leads to even $10 in donations towards research- then this awareness is a good thing. Personally, I am now going to move to Entyvio for my Crohn's because Simponi is not working and there's nothing else I can try. This means that, much like Obi Wan, Entyvio is my only hope. Because of that I HAVE to hope that awareness generates money for further treatment development that doesn't involve ripping out more of my insides. I have to believe and I fully support Bethany and her goals- whether they be a modeling career or ANYTHING else her little heart desires. Much in the same way I expect the same support from others in my goals.

We're all in this together, people. What's wrong with hoping for the best?

**Post edited to avoid all the **** because I forgot about the no naughty word rule.

Very nicely said Laurenne!!!!