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A Boy, A Bikini, and an Ostomy

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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.

Let’s Talk About Sex

*Disclaimer!  I am writing this article with a specific audience in mind.  If you are healthy enough for sex then I am talking to you.  If you have just been cleared by your surgeon and you are a brand new Ostomate wondering how to jump back in then I am talking to you. If you are the partner of an Ostomate, this may be helpful for you.  If you had a longer than expected hiatus from sex and are wondering how someone else made it through something somewhat similar to you then this is for you.  If you are looking at Ostomy surgery in your future and were wondering how the transition back to sex might work after then this is for you. For that matter if you are an adult in general interested in sex I am talking to you.
Who I am NOT speaking to:  Minors.  Yep, that’s pretty much it.  This article is NOT for kids.*  
There is a myth out there that Ostomates are not sexy.  There are misconceptions about whether Ostomates even have sex.  Surely it can’t be any good, what with ‘that bag’ in the way?
In truth couples are proving this myth wrong every day.  We have energetic, passionate, rowdy, tender, flirtatious, spontaneous, tangled up, sweaty, naked, and amazing, keep the lights on and give him a good show married people fun. 
I have been married for nearly fifteen years to my dearest husband Ben.  He is funny, charming, smart, and my friend.  We have been through a lot together and make a great team.  Because of all his nifty traits, (and his lovely melty brown eyes), I trust him and don’t have to hide anything from him.  This makes for wicked awesome sex!  That’s right folks, I am his Goddess.  Bearing in mind that I have not been keeping tabs on other peoples love lives; I would consider us normal.

After surgery to become a permanent Ostomate there was a transition period.  I was learning to meld with my gear, reacclimate to being pain free, and figuring out my new activity level.  By the time I got the ‘all clear’ from my surgeon, I was ready to regain my goddess status.  But we had a few obstacles to overcome before things could get back to normal. 

The most important was body image and self confidence.  I feel sexy so I AM sexy.  Just one of those life facts that I figured out early on, and still stand by today.  I am sure if I went into hiding and pouted about my Ostomy or Crohn’s Disease I wouldn’t be cute at all.  Not even to myself—so I didn’t.  But that does not mean there wasn’t a journey.  I needed to be proactive and find a way to make this new thing work.

Because my husband is my friend I felt natural being naked with him.  But starting out I did not see my Ostomy as part of me; I was still transitioning (melding) with my Ostomy.  It was awkward to go from flat tummy to what I felt was a bulky bag.  This stoma/bag combo was a rude interloper messing up my hard work.  I was grateful for it, after all it saved my life, but did not think it was sexy.  At the time I was using the clear full length bag where you can see all your output.  Useful for a new Ostomate in regards to learning about stoma size change and output patterns, but it’s not going to have your husband panting after you by any means. 
I was concerned with being able to rock the Ostomy and be as sexy as I felt inside.  I was worried that my poo-phobic husband would not find me amazing anymore.  I was afraid that instead of passion I would get pity, disgust, or even worse- rejection.  I discovered with only small changes to my lingerie I could hide the clear bag and have fun.  But that wasn’t enough.   I hated the sense that I was hiding any part of myself and it made me cringe to think that this was the trend I was setting so early into my new Ostomy life. 
I discovered opaque bags.  And even better, I discovered the drainable small opaque bags.  Now I am hooked.  They are skin colored, tiny and perfect for my needs.  Now I could feel totally naked with my husband and not worry about Ostomy gear getting snagged in and amongst all the sexy high jinks.  It has been the perfect fit ever since.
My sweet husband had an Ostomy journey of his own to traverse.  He was stressed out in his own way and recovering from the surgery like I was.  On one hand he was grateful to have me healthy, happy and pain free. But on the other there was a real sense of loss. 
For him the Ostomy was like his wife had lost a body part.  He saw me as permanently handicapped.  No more washboard stomach and flat ‘safe area’ for him to run his hands freely over.  Instead it was replaced by a new, mysterious, and dangerous area that may cause harm if touched wrong.  He was afraid to touch my bag for fear of injuring my stoma, irritating my skin and making a wound or pulling it off during the fun.
In the first two months there was cautious reluctance on his part when it came to any physical contact beyond a gentle hug.  I could feel his efforts to be extra gentle.  I watched the expressions run across his face as his hands lightly surveyed my body.  Ben was afraid to ‘break me’.  He had been witness to what Crohn’s Disease could do and had seen me at my worst.  That was stressful on him and made a lasting impact.  So, of course he could not feel comfortable having sex with me until he was sure that I would be okay.  I was eager to get back to our active sex life but did not push him; knowing he was still working things out.  At first he was very aware of my every reaction and took special care to go slowly.  I went out of my way to show with my actions that I was more than healthy and enthusiastic.  Once he realized I was just fine, he became more comfortable.  
It was an adjustment and a definite change.  Ben welcomed my new lingerie with eager acceptance and warmed slowly to the small opaque bags.  He is still very careful about my stomach and sweetly accepts my wish to dash into the bathroom to ‘freshen up’ aka. empty my bag and sometimes switch to a small swim size bag as an addition to foreplay.  This does take some of the spontaneity out of our sex life but it is easily compensated for with a little preparation.  I often return moments later to lit candles and fluffed pillows, so I count the ‘distraction’ as a positive one.  It is not that there is no spontaneity, it has just changed.  Ben now notices when I’ve just left the bathroom and makes out with me in the hallway in effect skipping that whole ‘freshening up’ phase and getting straight to lighting each other up. 
At this point Ben has come to terms with my surgery.  It doesn’t matter if I am in a small or regular size bag, lingerie or in the buff.  Whatever I feel most sexy in is how he loves me.     
Sex is more than the in and out grinding off of one another.  It is the confirmation of our covenant expressed physically.  When a couple has sex they are feeding their relationship, nurturing each other and connecting in a spiritual way that infuses their souls.  I comfort, console, empower, and confirm him as my one and only.  Why wouldn’t I want to do that every chance I got?  The act of sex is quite claiming.  I belong to him and he belongs to me.  This fact goes beyond the presence of an Ostomy. 
For this past Lent we celebrated by putting our marriage first.  We chose to have sex every day as a gift to ourselves.  It was about giving up all those things that make you too tired, too busy, and too irritated.  Our lives are busy, so we had to carve out time and prioritize each other.  We were sweeter, made out more, and reveled in our happiness.  It was about strengthening our marriage.  Personally, I was celebrating my life and my health and the ability to participate fully in it.  It was the most glorious forty days ever!  I would highly suggest sex as a perfect way to celebrate any season of the year.
Some tips that might help
*Switch to small opaque bags for sexy times.
*If you feel timid or have a partner who is, wade in with lingerie then lean towards going without once you or your partner gets more comfortable.

*Don’t hide in the dark.  You are alive, lovely and healthy enough to have sex.  Be proud of your good stuff and celebrate that with your partner.

*Be patient with yourself and your partner.  Cut, altered, sensitive, and mute nerve endings in the perineal area –especially if you have had a proctolectomy- change sensations.
 

*Be willing to try different positions.
  Work together to learn what feels best for you.  Try things like being on top so you have better control, plenty of water based lubrication and creativity.  If something doesn’t work, don’t give up.  Just try something else.  You are only limited by your imagination and flexibility.
 
*Don’t be afraid to talk with your partner and nicely guide him to what works best.  Trust me- he wants to rock your world.  He can’t do that if you don’t help him out. 

*Practice makes perfect.   Keep trying until it is just right….then do it again!


 Happy love life everybody.