Remember Who You Are

Ostomy Beautiful
Please remember who you are:
You are lovely just the way you are. You have earned the right to be okay in your own skin. You have earned the right not to hide. So Don’t. Your life and your story are valuable.


A Boy, A Bikini, and an Ostomy

20140722 039

For once, I’m not writing a blog on an airplane to kill some time. Christy mentioned an issue that I feel needs to be addressed immediately.

In light of all the bikini shots that have been going around, and the recent media attention surrounding them, a few very good questions have rolled her way. One of them caught my eye as it pertained directly to my past behavior. But first, a bit of context for those who like context….

On a long flight to Philadelphia, roughly two years ago, I wrote a blog for Crohniebolognaibd.com that got split into two parts. They reflected the events and my feelings that were involved in my wife’s permanent ostomy. There is some heavy stuff in there, and I still get a bit emotional thinking about it. Several times in the course of our marriage Christy has nearly died due to Crohn’s, and I believe the events that occurred during her recovery from her permanent ostomy was the closest she came to leaving me a widower. That is in Part 1. The information under the ‘Ballroom’ portion of Part 2 contains some of the context pertaining to the question I need to address and answer.

Surfing a few of the posts from various Crohn’s and Ostomy websites, there has been a recurring concern since the whole ‘Ostomate Wearing a Bikini’ media storm in early July. And that concern, and the reason why I’m writing this brief post, is “I am a woman with an ostomy, and my husband/fiancé/boyfriend does not want me to wear a bikini in public.” So, let’s dive into this and I’ll give you my perspective as a non-ostomate in a committed relationship with an ostomate.

Every man is different, and every man will react in a different way to various situations. That said, I think I can weigh in on this one with some level of accuracy. There are three likely POSITIVE causes for his reluctance for you to wear a bikini in public. I say ‘positive’ because if you are in a bad relationship, then all of my advice and insights are not going to be helpful. Those three things are: Overprotectiveness, Anxiety, and Fear. Not great words to associate with ostomate boy-toy’s eh? Doesn’t make it untrue as I went through each and every one of these emotional states.

I was Overprotective of my wife. I did not want people to judge her for her ostomy. They didn’t know her; didn’t know what she went through. And it was not fair for them to make assumptions based upon the gear hanging off of her abdomen. But…they WOULD make assumptions, and they would say something to ruin her day. Or….at least that is what my overprotective emotions were relaying to me. I must do all I can to help her hide her gear so she doesn’t have some asshole make a stupid remark!

I had anxiety because I didn’t want to deal with the fallout from those stupid remarks. People MUST NOT FIND OUT that she has an ostomy! If they do, they’ll give her shit, and I’ll have to deal with the emotional fallout! I’ll have to spend days or weeks helping her feel better and find ways to make life not suck! I want our lives to be happy, not ruled by the sadness that is going to come from some random jerk or judgey people.

And I felt Fear. It isn’t normal to have ostomy gear on display to the public. Women should look like they do on TV, in department store ads, and in the general public eye! A woman should be without flaw….and if a flaw is detected, physical or behavioral, then she will be ostracized as badly as Hester Prynne.   That scarlet letter on her abdomen will be a mark upon our relationship that will destroy any chance we have at a normal life!

Some or all of those are problems your man battles with in that grey-matter between his ears. Contrary to sitcoms and general stereotypes, men are VERY emotional, we just like to think we can hide our emotions. The overprotective, anxious fear he feels could be a direct result of his love for you and his need for the relationship to not fall into turmoil or a quagmire of depression and sadness. Is the possibility of your relationship being defined and dominated by your ostomy? No. Not a snowball’s chance in hell. Is the possibility that he has trouble dealing with the public perception of an ostomy and for this reason he has a fixation on 1-piece swimming suits? Almost definitely.

With that said, here’s how you deal with this problem of public perception.

Be yourself!

The ostomy doesn’t define you. It doesn’t change how you act and react to the roses and poo thrown at you in the course of your life. If you want to wear a bikini, wear one. He’ll get used to it or he’ll leave you . If he leaves you, it’ll hurt, but ultimately he likely would not have passed critical line: “for better or for worse, in sickness and in health”. Christy kept her outgoing nature and I was able to eventually get over my anxiety and overprotectiveness.

Mental Tricks!

Make him aware of a philosophy I picked up a while ago. I’m not sure how or where I ran across it, but the philosophy goes something like this: You care about yourself more than other people care about you. This philosophy works in two ways. An example of how it applied to ‘me’….I have some anxiety when making public speeches, and it took many years for me to figure out that this little item was causing me more anxiety than was reasonable. I was too worried about what people thought about me, and it was causing me to focus too damn much on the fear and anxiety of how they would react to what I was saying.

Turn the sentence/philosophy around and look at the other side. They are too preoccupied with their own life to care about my speech. Odds are, they will forget 75% of what I said, and the 25% that remains will only be a vague memory of the content of the speech, not what I was wearing, or my hair cut, or whether I stuttered mid-speech.

Once he understands thatNobody Cares

1.) We aren’t in High-School anymore, and

2.) Joe Blow on the beach cares more about what he is doing than judging your life, he will get beyond any applicable public fear.

A person is able to be himself, and let their significant other be herself. And hell…. I guarantee he’ll be a happier person!


Dismiss the Jerks!

Some people are jerks. They insult for the fun of insulting. Most of them are young, inexperienced people who, according to any game of Call of Duty I’ve ever played, had intercourse with my mother on several occasions. Eventually they may graduate high school and experience the real world. Then they will not have time to devote to attempting to boost their self-worth by reducing other people’s self-worth. Dismiss these cretins. Tell him that these idiots don’t matter one whit to your life or relationship. ….. maybe word that into a more flowery, tactful way….. In general, not letting some stupid jerk mess with your head, regardless of whether you are an ostomate, boyfriend of an ostomate, have red hair, have big hips, are too fat or too thin, are straight or gay, have freckles, dimples, or are wearing your ‘weekend cleaning clothes’, or are generally living life, then you will find yourself dwelling more on the good things life has to offer, than what some stranger said in an attempt to look cool or feel superior.

However, if they go too far, don’t be surprised if your boyfriend/husband punches them in their stupid face. There are limits to the types of verbal abuse we will allow someone to say at/to our significant others or close friends.

Baby Steps!

Buy your bikini, but buy a few sarongs to go with it. The first time you wear the bikini around him, wear the sarong 90% of the time. Then next time you are with him, 80% and 70%, and so on. Not only do sarongs look hella sexy on women, but it’ll give him a bit of that middle-ground between a bikini and a 1-piece. As time goes on, wearing a sarong won’t even matter anymore because he’ll have acclimated to the bikini AND he’ll have realized that the majority of people just don’t care that you are an ostomate wearing a bikini on the beach.

see nobody cares-bikini


Here’s an excerpt from Part 2 that I feel is still relevant and highly applicable to this post:

“Perhaps if your guy-dude-person-spouse is being overprotective, or he is pushing for longer shirts, one-piece swimsuits, or whatever, don’t assume he is ashamed to be around you, or with you, or of you.  He may just be worried about stupid people saying shit to you that will hurt your feelings for no good reason.  It only takes one snarkey emotionally shallow teenager to ruin your day.  I don’t want to see any day’s ruined.  That is no excuse for me to hold my wife back from her outgoing, expressive self.  And as long as I can recognize WHY I feel the way I feel, I can check myself when I need checking.  But it did take me some time to get to the point where I could realize these emotions.  So, if your spouse is doing stuff that seems to be overprotective, this may be why.”

 Every relationship has its semi-unique issues. The older I get, the more I understand that all relationships have some crazy and wild stuff happening. A kid with hemophilia, a crazy family member, cancer, depression, infidelities, poverty, severe disabilities, Alzheimers. The list is expansive and emotional. The thing is, if everyone is going through this stuff, then those complete strangers are too preoccupied with their own issues to devote more than a brief portion of their life to your problems. The things that trouble you matter only to your significant other, to your close friends, and to your own self-worth. Realizing this, you and your significant other will find you have the emotional freedom to enjoy you walking around, sunbathing, and swimming in that bikini.

Be well my friends.


So there I was having a bad hair day.  To top it off I had laundry to fold.  Not horrid.  But not fabulous either.  To cheer myself up I slapped on a green bandanna to cover my hair, and match my green bikini, spiffed up my ostomy bag with some barrettes, and set out to the back yard where I staged the laundry baskets around my picnic table.  Folding laundry on a sunny day is exactly the spoon full of sugar to make everything far more delightful.

Kids are crafting, I’m folding and somewhere in all that new found industrious zen I decide to officially submit a pic to the #GetYourBellyOut campaign. (There is also a community support page on Facebook)  Why not?  I’d posted many a pic of my belly before.  This is a movement for education that I’d seen and thought was quite clever.  It was my turn to participate. In no time flat a pic was shared. Cheers to education and advocacy. Ostomates go to the beach like everyone else. Yay!

4th of July fun at the beach.
Here’s the picture. 4th of July fun at the beach.

And then this happened:

I’m in an article in the El Diario. vvv
Bikini photo inspires hundreds of patients with Crohn’s disease


Turns out, that pic shared to a closed group ended up out in the world. *Several lessons learned for me.* In the end I decided to own the situation and shared that same image on my own twitter et al.

Now if I may please add a couple gentle corrections.  This article talks only about Colostomy bags as though all bags are the Colostomy variety.
There are:
Colostomy~ a stoma coming from the colon to exit stool
Ileostomy~ a stoma coming from the small intestine or ileum to exit stool
Urostomy~ a stoma coming from the bladder or ureters to exit urine
And any combo there within.
The general term would be Ostomate.

In addition, the article suggests that Bethany’s pic ‘triggered a movement’ where people then began to share their Ostomy selfies.  This is not true.  Perhaps some people saw Bethany’s pic and decided to share.  Which is great if people have felt empowered by her.  However, her share did not trigger a movement more than it highlighted a movement for education and awareness that was already there.  To read Bethany’s original feature here she states ‘She got in touch with Crohn’s and Colitis UK Facebook group to see if they would let her post something on their page.’  Bethany sought her local education and awareness group to see if she could participate.  And good for her.  From there the world of Facebook took notice.  She started conversations that have lead to greater awareness.  Cheers to her for that.

Now that I have cleared up those errors I can say that the media seems to be slowly improving in a way I appreciate.  They are showing Ostomates in a good light which I hope will lead to a break down of negative stereotypes.  And they’re getting the terms more accurate over time. We need much more of that.


*Updating to add because it’s very much the same photo and article regurgitated into different papers. Does no one respect original writers or what?*
I’m on the cover of The Huffington Post below Angela Merkel, Chancellor of Germany. THAT is never going to happen again.

On the front cover below
On the front cover below Angela Merkel, Chancellor of Germany.

Here’s a link to that Huffington Post article

There were more news outlets as well….


Women’s Rights News


In the end I learned a lot from this experience, both positive and negative.
The laundry got folded, the world kept moving and my Grandma was pretty impressed about the Angela Merkel thing.

I love Duck Tape

Glow in the dark Batman!
Na Na Na Na Na Na Na Na Na Na Na Na Na Na Na Na (Glow in the dark) BATMAN!

I love Duck Tape. Classify me as a proud addict. I have been known to turn up the music so I could tape in a ‘party atmosphere’. I have included my kiddos to perpetuate the Duck Tape love, and encourage them to tape on their own. I even keep my tape on a stand (repurposed broken floor lamp) that resembles a stripper pole. When I look at it I giggle inwardly at the naughty secret reference and must confess all those bright colors and artistic possibilities make me giddy. I seriously have the warm fuzzies for the projects to come and frequently crave alone time to draw them out for later completion. The anticipation occupies my mind in a day dreamy warm glow. Yes, I love Duck Tape.

Repurposed broken lamp base aka The Stripper Pole.
Repurposed broken lamp base aka The Stripper Pole. (Tee Hee)

But it’s more than tape on a roll. It’s more than creativity. My love of Duck Tape is an outward expression of love for my anatomy just the way it is. My love affair is the gift of acceptance to Crohn’s Disease, Ostomy and myself as a whole human. When I wear my Duck Tape creations I am most frequently in a bikini on the beach. Just me enjoying life in strategically tied triangles of fabric with Duck Tape, sunglasses and a hat as my only accessories.

I earned the right not to hide.  So I don’t.

Feeling like a Crohn's Cutie in my hipster mustachio Ostomy cover.
Ben snuck this pic of me feeling like a Crohn’s Cutie in my super cool mustachio Ostomy.

People look, some stare and others inquire. And you know what? All of that is okay. Because I am okay with me.

Beach ready!
Beach ready!

Woo Hoo!  I found a tape that matches.  Totally made my day.

Dog Beach!
Dog Beach!  Check out my Take Steps visor.  Rock’n!

The one time I tried the ‘nude’ look aka no Duck Tape.  Wet nude bag = see through O.o  No thank you.  Lesson learned.

So if you have Crohn’s Disease, Ulcerative Colitis, J-pouch, Ostomy, Urostomy, scars, tubes, tanks, PICC lines, or what have you.  You have earned the right to not hide.  You deserve to live openly in the sun.  And if a little tape helps you along the way, go for it.

Love you my Sweet Bolognas 😀

Ostomy Pride

Ostomy Pride on Cinco De Mayo!

Do I look offensive?  Would you swim in the same pool with me?  Do I appear unfit or unable to swim?  Some people think so. 

Many organizations with public and semi public swimming pools would agree that I am fit to swim– but at a limited capacity.  Therefore they place unfair and outdated rules and regulations upon me solely because of my ostomy. 

Some of these rules include: Must wear baggy clothing~ Really?  Other than requiring everyone to wear proper swim attire, mandating that any one group of individuals should dress differently than another group with the sole reason being the presence of an ostomy, is a form of discrimination.  In addition, everyone knows when you get wet, no matter what you wear, when you get out of the water your clothing sticks to you.  This situation would work to highlight an ostomy more than hide one.  Regulating baggy clothing to ostomates alone is ineffective and shaming.

 Bag must remain covered at all times~ I have a modest tankini that I use for my mom n’ tot swim class.  Even with the best of efforts to conceal, my mid drift will show and therefore expose my ostomy bag.  Any person who moves, reaches, and plays in the water as I do will cause shifting and lifting of even the best fitting swim wear. 
In addition, this rule limits me from wearing my super cool bikini.  I am an adult woman who wants to look cute in my swim wear just like anyone else.  And like many young ostomates, I like to decorate and flaunt my ostomy bag.  I see it as cute and another opportunity to accessorize.  I do not see my ostomy as gross.  Under current rules, because I will not hide who I am, I would not be allowed. 

Empty bag before entering the pool~ This rule in particular is vexing to me.  Anyone past the age of potty training knows when it is time to ‘Go’.  Every new ostomate goes through a transition period where they meld with their ostomy.  Our ostomy bags become part of our body in a sense.  Just as any person would traditionally ‘Go’ when it is time; an ostomate would ‘Go’ as well.  It is automatic and in many ways the same as any other person.  No one, ostomate or no, would go into a pool when they should eliminate first.  To single out ostomates and tell us when to ‘Go’ is ridiculous and highly insulting.  I am an adult with common sense and the ability to regulate my own bathroom needs.  Does the pool tell other adults to poo before entering the water?  No?  I didn’t think so.

Limit swim time to thirty minutes~
I believe this rule is based on the idea that ostomy bags magically fall off- like a band aid.  Or perhaps the idea that ostomy bags are not water proof.  This is outdated information and is completely based on myths.  Ostomy bags are made of top of the line materials designed to stick to skin through sweat, bending, moving and active life…including swimming.  Many ostomates even have to use adhesive remover to pry their ostomy wafers from their skin.  Our bags are stuck on that well.  Limiting swim time is uneducated and outrageous.
Must provide doctor note before allowed to swim~
This is the other rule that really gets to me.  Every ostomate works closely with their surgeon.  Part of that excellent level of care is the Post Op visit.  The conclusion to my post op was the resounding ‘all clear’ to lead a normal, healthy life.  I got the green light to be as active and care free as I saw fit.  I no longer need my surgeon or anyone elses permission to live my active, healthy life.  My surgeon removed my guts- not my brains, or the huevos it takes to stand up for myself.  A facility requiring a doctor note is only doing so because it covers them from having to stand up for ostomates.  Instead of educating themselves on the facts of current ostomy culture, they hide behind rules made decades ago based upon antiquated information, fears, and stereotypes. 

Clearly these rules need to be removed.  They are uneducated and obsolete.  They smack of discrimination and appear to be written in a time of fear and shame of ostomies. 

When I see the above rules it feels like they are referring to someone else.  These rules are talking about someone I do not recognize.  I do not see the offensive, gross, must hide, shame inducing person that would fit the above guidelines. 

My ostomy saved my life and I am grateful for it every day.  I glory in its clever functionality.  I see it as beautiful.  I love to accessorize my bag; and for those who stare, I see my ostomy as an opportunity to educate and have others see how lovely and wondrous it is, just as I do.
I am part of the growing demographic of young ostomates.  I am thirty six years old and will spend the majority of my life as an ostomate.  I have two small children that are watching me carefully as they grow.  I want to live as a positive strong example, and show them how to enjoy life to the fullest, but also to never back down when things get hard, especially when things are unfair.  I refuse to live my life hiding who I am.

My stance is not unique; this is the general consensus of ostomates my age.  Young ostomates are parents, go to college, have jobs, are active, intelligent people who have been through a lot, and have a zest for life because of it.  We are a new shade of normal.  We do not hide; in fact we flaunt our ostomies.  THERE IS NO MORE OSTOMY SHAME! 
What can we do?  Educate.  In the phoning around I have been doing with local pools I am finding that the people in charge do not even know what an ostomy is.  Or they try to site old information and misconceptions like:
Ostomy is like a band aid
Ostomy is like an open wound
Ostomies leak all the time
Ostomies are something for the elderly ~as if that was a bad thing
Ostomies are unsightly and off putting to other swimmers

These are sad stereotypes that were perhaps acceptable twenty years ago.  Every one of them is wrong.   Thanks to science and determination, current ostomy gear is stronger, smaller, lighter, lower profile, water proof, and virtually noise free.  But no one seems to know about it.  This is why these ancient rules are still here. 

I have called my local pools and was able to educate one aquatics director.  She was open and seemed relieved that I was willing to tell her all about current ostomies.  I even offered to personally come by and show her and her staff what an ostomy is and how well they work.  Show how durable and waterproof they are.  I want to lay the ground work for openness.  I want to make it okay for every ostomate to swim.  Not just a case by case basis.  I want to eradicate every antiquated and uneducated rule.  In my heart I hope for a time when companies can educate themselves so they are better able to stand by a fair policy.    

Education is easy.  You only have to reach one person at a time.  Just be yourself.  Show with your actions how cool you are and how awesome your ostomy is.  Wear your ‘Ask me about my Ostomy’ t-shirt.  Talk to others about your ostomy.  If you have one, wear your bikini and decorate your bag.  Wear whatever swim wear you are most comfortable in.  Call your local pool or gym to see what their policy is on ostomates.  Write the leader of your local pool (or national pool in the case of a larger organization) to get rules changed to include everyone. 
Be active, be proud! But never be quiet and never back down when someone tells you that you can’t do something just because you have an ostomy.