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.
Clothes and styles that flatter, flaunt and focus on success.
How I got all crafty and refashioned the waistband of my pants to fit better without rubbing or cutting into my stoma. Yay! I can wear my jeans. Check out this really cool way to make Ostomy Pants! (Or fix any waist band really)
After all, you are perfect just the way you are. Make your clothes fit you. Not the other way around.
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.
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.
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 that
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.
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.
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.
When it came to Bethany Townsend, 23, from Worcester, the world, or at least the world of Facebook, overwhelmingly agreed. Bethany is physically striking. And sexy. Ostomy and all. Townsend posted her pic on the Crohn’s and Colitis UK Facebook page. Her image was viewed by more than nine million people and has received 190,000 likes. That number just keeps growing.
Definite conversation starter.
Cheers to the power of a well posed selfie.
But along with the messages of support, ‘Hey, my mom/dad/brother went through that.’ and the ‘You’re so brave.’ There is also a sense of surprise. Like people are just now noticing IBD, and especially Ostomates at all. But more specifically they’re seeing us in a good light. As if the negative stereotype of Ostomates in their mind just got challenged. In a good way. Don’t get me wrong, that’s terrific, but hardly new news to the rest of us.
In the being brave, strong, lovely and even sexy category, Bethany isn’t alone. Not by a long shot. There are scores of beautiful Ostomates out there. So much so that Awestomy had its own #right2remainsexy campaign in July and August of 2013, giving all Ostomates the open door to proudly bask in their sexiness while encouraging others to do the same. Empowering, validating confirmation of our continued ability to be seen as beautiful and desirable in a way many would automatically think of as ‘no longer an option’.
Vanilla Blush is another company promoting self esteem and Ostomate loveliness for all. It’s absolute perfection that Nicola Dames uses real Ostomates as models. Not one person can dispute that those who pose for Blush are highly qualified for their positions.
And that’s what’s beautiful. Each person that posted to Awestomy or poses for Vanilla Blush are regular people like you and I.
You know what’s really sexy?
(Because sexy isn’t just the skin deep attributes that look good in magazines or there wouldn’t be a big push to put ‘real’ people in ads.)
It’s being okay in your own skin. It’s confidence and openness to life. It’s loving yourself exactly for who you are. It’s being intelligent, educated about your disease and having the poise to represent that truthfully to the world. It’s a kind of charisma that’s earned.
Just look around our IBD community. There are legions of intelligent, beautiful, clever, inspiring Ostomates, J-Pouchers and IBDers out there. It could be that special someone who inspires you, who encourages you, who makes you smile or laugh. Someone who makes you feel like you’re not the only one. That person who’s been through exactly what you have, and come out the other side. That person open enough to share in a way that shows you hope that maybe you can try again and get there too.
I made a little list of just a few of the people who inspire me. I admire their dedication to the IBD community and their willingness to share their journeys with us. These people are beautiful to me.
Jason of Awestomy
Sara Ringer of Inflamed and Untamed
Maggie Baldwin of Let’s talk IBD
Sam Cleasby of So Bad Ass
Jess Grossman of Uncover Ostomy
Dan Sharp of The Great Bowel Movement
Christy of Ostomy on the Track
Paul Riome of Living Bigger with Colostomy
Frank Garufi Jr of The Crohn’s Colitis Effect
Marisa Lauren Troy of Keeping Things Inside Is Bad For My Health
And of course the list goes on… I could easily continue. Suffice it to say, these people are inspiring, beautiful and lovely to me.
So, great job Bethany for the selfie seen ’round the world. People are talking, cheering you on and hopefully viewing Ostomates and the IBD community as a whole in a more beautiful light.
Now if only we can segue all that instant recognition into education. That would be the most beautiful of all.
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.
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.
People look, some stare and others inquire. And you know what? All of that is okay. Because I am okay with me.
Woo Hoo! I found a tape that matches. Totally made my day.
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 😀
How do I cover my Ostomy bags? With the help of Duck Tape I rock my Ostomy bag in style. In this video I show you how I cover my bags, how to remove the fabric liner, how to line up pattern, how to cut around the vent and how to reinforce the backing for a more secure, longer wear time all while looking amazing.
Join me in glamorizing your Ostomy bag, and enjoying your life as lovely as can be.
My favorite jeans have been dead for over a month now. I actually wore them out. As in I wore them for so long and for so well that they could not stand up to my Awesomeness anymore! The end was a hole right by the back pocket that tore in an assward direction while I was shopping at Walmart of all places. Good Grief! I was one of THOSE ridiculously dressed Walmart shoppers. Thank goodness for underpants.
*Presses eyes closed to bury the shame of the moment.*
I miss them terribly and MUST find a replacement.
And so, in my mind I have put up an advert:
Perfect Jeans Wanted!
*Just the right length
*Rides low enough that it can go below my Ostomy
*Rides high enough that I can tuck my Ostomy under the waist band
*None of that trendy stuff like rips, splotchy bleach stains or crazy skinny legs et al
*Must not cost a fortune
*Butt crack must not show when bending over, moving or having general fun
All applicants meet me in the dressing room. I will be there shortly.
In all honesty the right pair of jeans is very important to me as an Ostomate and a lady. In these jeans I never worried about my Ostomy and whether I looked good or not. These jeans were always an automatic YES. I felt confident and at ease in my own skin. No tugging, bunching, pinching or being self conscious. I could just be myself. They were a part of me in all the best ways possible.
And yes, I am aware that I am a nut ball.
When I first picked up the black lace booty shorts, I ran my hand over the smooth, stretchy fabric and gave it a tug. I thought, “Oh, how nice! These are going to move with me and follow my curves.”
I must confess that I am suspicious of lace. It is often scratchy and unforgiving. I rubbed the black, fine spun confection over my wrist. It was not scratchy at all. How’d they DO that? With my curiosity piqued, I turned the garment inside out.
The entire creation is tailored with smooth-finished seams. The texture feels soft and adaptable, as if the booty shorts were custom made to fit me. Around the reinforced waist band there is a small silicone strip. Not too much; just enough to keep this sweet dainty in place without grabbing or bunching while moving around.
I was impressed with how the lower portion of the booty shorts is constructed. Awesomy! has blended quality workmanship with exquisite form. The smooth seams on the legs give a second-skin feel with an attractive finish. The perfectly fitted stretch-fabric shapes to flatter your bum while accentuating your best assets. The cotton crotch is finished off with surged edges versus folded edges. This method provides a more comfortable fit that looks smooth from the outside without digging into ones lady parts.
Wearing my Awestomy! Women’s Booty Shorts I feel sassy, confident, sexy, daring, and lovely! It allows for a sleek ‘nothing there’ look; proven time and again as I strut my stuff in close fitted dresses, skirts, shorts, and fitted jeans. Every woman wants to feel amazing in their lingerie. The Awestomy! Women’s Booty Shorts easily achieve this by accentuating your natural effervescence.
Plus these booty shorts make my bum look Awesome!
I am wearing a right side, full size, Hollister 2pc Lock n’ Roll appliance in this picture!
|IBD Awareness Purple|
IBD Awareness Week has been challenging, wonderful and filled with hope.
I shared about things in my life that are uncomfortable for me to talk about but in the end encouraged people in ways I would have never dreamed.
I sported my Ask Me About My Ostomy t-shirt and Hoodie and got some great questions.
I educated my new Doc about how cool it is to be an Ostomate. I see her again today and will continue to be a beacon of IBD Awesomeness!! as a reminder of what IBD can be if you never give up.
I challenged stereotypes, encouraged questions, and lived boldly. It has been a glorious IBD Awareness week.
Today on the last day I wear purple. These ear rings are special to me. For one, they are a gift from my twin sister. She is more than a twin, she is my best friend. She has always been supportive and loving, a listening ear and encouragement. She inspires me with her very matter of fact way of managing her IBD on her own terms. She is a fighter. I love that about her.
Another special thing about these ear rings is that they were made by a woman who battled, but in the end died as a result of her IBD. Each time I put them on I think of her hands crafting them, her fighting spirit, and her positive, hopeful attitude.
They are a reminder of how much we must fight, how loud we must be, and how long we must try. Because our very lives depend on it.
|Thank you Duck Tape! We are now best friends in my head.|
Once a week? Really?!! Yes, that is the current trend of bag exposure for the fearless CrohnieBologna.
Thank you Universe.
Today the Jump Rope Club got another public showing. Yay! My lil guy took off running full tilt. I had to drop what I was holding (my giganto water cooler thingey) to take off after him as no one else here knows he is an Alcatraz impressionist. In the Flash inspired running I was doing, my shirt worked its way up.
By the time I wrangled a flailing toddler up into my arms my bag was open for all to see! SO glad I was wearing the super pretty one that you see in the pic.
The jump rope teacher had the very same tape in his bag for decorating jump rope handles. ~What a small world; and perhaps another Duck Tape lover to chat craftiness with?? One could hope!! 😀
1) No more bringing the gigantic water cooler thingey as it distracts from watching Mr. Runoffboy.
2) Just like we all try to wear our prettiest lingerie when we know someone will see them; always endeavor to wear either super cute decorated bag or the nude color when attending activities for my childrens school. *Must NOT mortify the children.*
|Ostomy Pride on Cinco De Mayo!|
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.
Look for yourself.
Do you see my Ostomy?
Hint* it’s on my right side about 2 inches below the belt.