Category

Living the Life

Having an Ostomy is part of my life, a life I really enjoy living!

Recap and Looking Forward

This is one of those catching you up, what the heck has Christy been up to sorts of posts.

Looking Back
I think of 2015 as the year of perseverance. It was a mix of really amazing opportunities, adventures of all sorts and some moments that were super challenging.

Bit of a Bump
2015 started out with a surgery to have my gallbladder removed by a new-to-me surgeon. Up until then I had been really spoiled with having one surgeon who did all my work for the last twenty- ish years. Thankfully my Gastro referred a very skilled person and all went well.

Got Awesome
Next came the 2015 #IBDSocialCircle. This was my first IBD conference where I would get to meet other advocates. I was super excited and didn’t know quite what to expect. I knew Sara Ringer would be there and that was it. I met the very nicest IBD Advocates, did my best to live tweet an IBD Social Circle Round Table, got a sneak peek at upcoming endeavors designed to improve the lives of patients and collaborate with fellow advocates during an all day meeting.  I was in Gastro Lady Heaven!

Got Exciting
As soon as I got home from the IBD Conference Where my Wildest IBD Dreams Came True – I dove head first into buying a house and moving.  I seriously put my luggage and IBD Conference swag into a box, taped it shut and kept going until June.

Challenging
So we have this house and are pretty excited to have a cozy little place just right for us where we could be Zen with our offspring.  We went in knowing there was some yard work and painting to do. And we were cool with that, as long as the house was sound. It would be a fun adventure. That notion lasted for about a minute before the peace and opportunity for transformation that was our house began to resemble that 1986 movie, Money Pit, with Tom Hanks and Shelley Long. Repairs – bugs- wilderness- rodents- pluming – broken major appliance- tenting and gassing, multiple roof issues, water damage, interior wall repairs and on. So far home ownership has been one adventure after another.

Secondary Disease
So I have Meniere’s Disease. It’s not fun. I did a post about it to give you an idea. About a month after we moved into our home, it decided to be really active. Meniere’s is quite ambushy and took some serious trial and error to figure out how to get some relief. I would like to tell you things are better. They just aren’t. I take sedating meds which somewhat calm down my ears before doing fun things and I keep food down because of sublingual anti nausea meds. Thanks to continuous tinnitus, I don’t have silence anymore. My hearing drops out for short periods of time in one and sometimes both ears frequently enough for me to mention it to you. It’s an ongoing process.

Crohn’s Disease
I see my Gastro on the regular, like ya do, and he reminds me it’s been a minute since we’ve done a pill cam. So I do that and it’s super amazing because the geek in me loves all that medical science working its way through. Plus it was one of the new systems that don’t use all the stickers but a large sensor plate worn belt style. (Future post about that) My pictures came out clean, my blood work came back lovely. The words ‘It looks like you are in REMISSION.’ were spoken. My Gastro brings up the idea of going off meds. And so that’s what we do. I am still amazed and really grateful about every bit of this last paragraph.

Busy
Otherwise known as ‘Mamas going back to school!’ With both kids stable and at their school during the day, it was time for me to go back and work on my education. I was super excited and optimistic that this time it would all work out. I was older, my health was more stable and with that pesky gall bladder out and an Ostomy on my team this go around, college was really going to happen for me. And it did. But the start wasn’t as smooth as I would have hoped. Those credits I managed to earn twenty years ago didn’t transfer. So I was starting over from scratch. At first I was pretty bummed but then I decided it would be okay. After all, I’m going back to gain skills to be an even better advocate. Psychology, public speaking, writing and more will help me be better at what I enjoy.  As long as I keep my goals up front, I can’t be bummed about that.

Recovery aka Holidays
Holidays marked the end of my first term back in school. I was proud to earn a solid B in Psychology, consistently work on home repairs with The Husband, and have time to relax with festive tree trimming and cookie making. Much needed time off with my wee family and Grandparents down for a visit was the perfect ending to a rollercoaster year.

Looking Forward to 2016
*First of all, I’ve got the hang of this college thing and I love it. My schedule works around my children’s time in class and I still keep my weekly volunteer time at their school. I’m taking classes that apply to my advocacy love and dream job which feels really good.

*Our hard work has paid off. The house is stable enough where we can divert some of our resources towards yard work – which I love.

*Back to Creating
With all that work going on there was limited time for fun stuff. It felt like we were always coming home to another thing to fix. Now it looks like the road is becoming more even. I’m getting back into the swing of being creative again. I’ve begun to crochet a little, write more and hopefully paint something that isn’t an interior wall.

Part of that goodness is that I’m back to sharing with you, but in a more rounded, balanced way. Sometimes I feel like I don’t have a lot of new IBD related things to say. But being a Crohn’s Disease patient and Ostomate, my everyday life is very relevant. There are things I do now I never dreamed I would ever be able to do when I was sick. And while I am well now, I know Crohn’s Disease could come back tomorrow and do its best to take all this goodness away. I am very aware of that.
And so to fit that intent I have a new page look which will continue to evolve. If you like it, thank my husband. He really listened to what I wanted and is making that happen in real life. He really is a sweetheart.

Thank you for reading and catching up on my 2015 recap. It’s amazing to look back on a year of change and learn from those experiences. I am eager to see what 2016 has in store.

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.

 

Tobacco Free Florida

Photo credit: Tobacco Free Florida Facebook page
This is the image used by Tobacco Free Florida in its attempt to scare smokers into quitting with the possible prospect of Ostomy. Photo credit: Tobacco Free Florida Facebook page. Click link for more. *Edit to add: Tobacco Free Florida has taken down this image from its Facebook page. It is still on their Twitter @tobaccofreefla *

I saw this and thought, ‘Wow! That’s a great big bucket of nonsense right there.’  I actually had to look at it twice to make sure I was reading it correctly.  I get what’s happening.  Tobacco Free Florida is trying to discourage smoking.  But the attempt is cringe worthy.  Making a point and doing it accurately in this instance are two very different things.  One is credible and truthful.  The other uses fear tactics and over exaggeration to sway the reader.

Yes, smoking can lead to colorectal cancer.  However, not all with colorectal cancer require Ostomies.  There are so many treatment options available that Ostomy is frequently temporary or unnecessary.  And for those that require permanent Ostomy, it has saved their lives.  Ostomy is not the bad guy, cancer is.

This campaign is holding up Ostomy as a negative consequence of smoking.  As if one would stop smoking this instant because of an Ostomy bag.  Highly unlikely.  If I were to count the negative consequences of smoking, an Ostomy seems minimal when held up against lung cancer, stroke, heart attack, and C.O.P.D. which recently took our beloved Leonard Nimoy.  Deadly.  And those are just a few.  Ostomies are not deadly.

Ostomies save lives every single day.  To shame the very tool that would save future cancer survivors is wrong, uneducated, and extremely dangerous.  What will you tell the person who actually needs an Ostomy, but won’t get one, because you made it a big scary thing to be avoided at all cost?  Because those are the exact people I help all the time.  Please hear me when I say, you are doing a huge disservice to those you profess to want to help.  Villainizing Ostomies is not the way to go.

And the caption “Do you know what this is? You probably will if you’re diagnosed with cancer in your colon or rectum.”  is a sideways swipe at those who smoke as a ‘This is your Scary future if you don’t stop.  Ostomies are Bad and Undesirable.  Smoke and you’ll have to get one.’  Adult boogie man stories with Ostomy as the monster under the bed.  Shaming and scaring with a medical appliance.

Speaking of medical appliances…. If I may point out, the bag in the middle is a urostomy bag.  For urine.  Which comes from the bladder.  Not the bowel.  I know smoking can lead to bladder cancer wherein a urostomy bag may be a solution.  But as you were colon/rectum specific, this adds to the idiocy of this campaign.

Not. Cool.

This campaign is not helpful.  Not at all.  It is poorly though out, threatening versus helpful, cutting to those who live every day thanks in large part to their Ostomies, and it’s willfully ignorant.

No thank you Tobacco Free Florida.

Try again.

Because I’m not having it.

*Disclaimer – I am a Permanent Ostomate due to Crohn’s Disease.  In addition I do not now, nor have I ever used tobacco products.  If I had my way everyone would be able to honestly say the same.  I have seen the destruction that all types of tobacco products have on a family.  Because an entire family is harmed, not just the addict.  I do not support smoking or tobacco use.  Its ravages, guilt, and extreme pull on a person have been purposefully designed to be that way by an industry that still operates and I wonder why.  I have seen loved ones try, fail, and try again to quit.  They are strong, in a way I could never fully understand, for having the courage to struggle and fight to win against addiction.*

Ostomy Tag Q & A

I was tagged by Megan of Front Butt You Tuber to participate in the Ostomy Tag Q & A. Basically answer 10 questions about being an Ostomate and tag three more Ostomate friends.

So, thank you Megan of Front Butt You Tuber for the nomination. If you want to find her go to: https://www.facebook.com/thefrontbuttyoutuber?fref=ts

In return I nominate:
Christy of Ostomy on the Track https://www.facebook.com/OstomyOnTheTrack?fref=ts

Marisa Lauren Troy of JournalingIBD https://www.facebook.com/JournalingIBD?fref=ts

Stephanie of The Stolen Colon https://www.facebook.com/thestolencolon?fref=ts

Ostomy Number One

It’s no secret. I love my Ostomy. I really, really do. But it wasn’t all fantastic exuberance. I started out unsure, scared and entirely uneducated. It was rocky y’all.

In my life I have had three Ostomies. Today I will share with you the origins of Ostomy number one.

I was seventeen. I had been sick for years. The first day I ever heard about an Ostomy or that you can even live with part of your bowel removed was when I was in the hospital during a hard flare that we were unable to control. Not a new thing at all for me. I had just come from a semi sedated colonoscopy and still felt bloated and painful from the procedure. I knew it was bad when the screen was turned away and the doctor got very quiet, annunciated his words and became very serious. He was face to face with the living monster that is IBD, trying to remain professional. As an adult who has been on the business end of a doctor clicking into ‘work mode’ I understand he was taking samples, noting disease symptoms and more. As a teenager lying on the table, I felt broken and wrong. Vulnerable. As if I was what he was angry about, not the disease actively chewing up the insides of a young girl. It was painful, scary and very isolating.

A few hours later the doctor came into my private room located at the end of the hall. My grandparents followed behind, grim looks on their faces, they found a place against the wall. Doc came to stand by the side of my bed and said something along the lines of. ‘You need surgery to remove your colon. You are not responding to treatments. You are going to have an Ostomy’. I started to cry. How do you live without your intestines? Then he got mad, raised his voice and scolded me to Stop Crying! ‘You are going to have this surgery and you are going to be Just Fine! People live without part of their bowel all the time. And You are going to be one of them.’
Head swirling, I half heard words about a surgeon he had contacted to do the procedure and he was off.

And that was it.

I had zero information. My grandparents could offer nothing but sorrowful glances in the now very cold room. I felt light headed as the blood drained from my face. I tried to wrap my mind around the idea of being purposefully hollowed out and surviving that. What kind of life would that be? My grandfather had been a medic during the war and through all my bleeding, painful episodes and late night fevers, he was a rock. Not anymore. With a grim set to his mouth he repeatedly cleared his throat, swallowing hard. Damn! He’s trying not to cry. My grandmother gave up on even trying to keep it together as her flowered hanky shakily dabbed already puffy, tear streaked eyes. Grandpa snapped into action, grabbed grandma by the shoulders and firmly escorted her out of the room. Just as he passed the door he looked back, eyes tracing my form from feet up, then connected with mine. He paused and called me my special name only my grandfather is allowed to use, and left with my grandma before him. I heard feet echoing down the hall and my grandmas full on crying.

I was left alone.

Well, Shit!

Looking back, that time in my life had been one very long flare with moments of ‘all hands on deck, she may not make it through this one’. So many hospital stays, medications, blood transfusions, z-tracking iron into my butt, IV hydrations, banana bags, Gatorade and pureed food. I was trying my best but barely squeaking by. I was overly familiar with illness and pain. It was part of my identity to the point where being defeated by IBD was a very real possibility that I had begun to be okay with. I held hands with death as lightly as possible. I didn’t want for it to sweep me away. But in an odd way death was more of a possibility at that time than growing up was. Most of me was fighting, but a small part tickled against the back of my brain that the fight I was giving was really not working that well and one day my battle may be over whether I wanted another go at treatments or not.

I even had ‘the talk’ with my grandparents where my funeral was planned out. I numbly worked out my wishes about end of life care, resuscitation, organ donor status, even a somewhat healthy picture was chosen for my obituary.

This was life at seventeen for me.

IBD was artful in its scraping away at my youth. It savored my childhood and was desperate to take more.

What I dealt with health-wise made high school stress, bullying and all the other things teens deal with feel both inconsequential and insurmountably difficult. There was no easy place in my life back then.

But then came a new way to fight I had never heard of.

Ostomy

I was admitted a day before the procedure into a private room in the big city teaching hospital an hour from where we lived. In perfect timing with a desperate need of a break from drinking, then vomiting the Go Lightly, my surgeon came to visit, followed by a gaggle of students in white coats. They listened intently as my surgeon and I talked. My surgeon is the nicest, most intelligent woman I have ever met. She ignored those students and focused on making sure I understood the procedure I was about to undergo. She sat on the bed beside me, pen in hand, drawing on the sheet as she spoke. The images she created on the stiff white cotton came to life as pen imitated needle and finger became scalpel. My curiosity turned to hope under the light of her knowledge. She spoke quietly but excitedly as she wove the words that created my new life of Stoma, Ostomy and J-Pouch. All questions answered and mind filled with possibility, she and her team left.

What was blank unknowing filled with guesses and assumptions became confidence. By the time she was done visiting I Believed I was going to be better. I looked forward to the procedure. I felt like a member of the team. This thing wasn’t being ‘done to me’. I was an eager participant.

From then on Dr. D was my Dr. Frankenstein and I would be her lovely little monster. Re created from parts that were otherwise broken into something marvelous and fantastic. I was made new again.

Early the next morning nurses carefully prepped me. I was first in line for the surgical suite. They made that sound fancy. As I stood with gown pulled to the side we designated a stoma site. The other nurse, gathering the belongings I had placed in a clear hospital bag turned to compliment the choice. ‘Okay’ I thought to myself ‘This is working out already. I can do this.’

In a chilled room, laying on the gurney amongst shelves with positioning blocks, supplies and rolling carts covered with fabric, I was given my IV and covered with another blanket. Curious, I asked what all those things were for. A nurse counting white gauze squares set her stack aside, answered, then gestured to a set of double doors indicating the operating room. ‘Ah, that’s where the magic happens.’ After a while a gentleman held up a syringe and asked what I wanted to dream about. ‘All the things I’m going to do when I’m healthy again.’ What will you do first? ‘Go to the beach.’ That sounds great. I watched as he pressed the liquid into my IV. The head of my gurney was lowered and the countdown began. 10, 9, 8…..7?…..

And that’s when my life began again. I woke up cozy and warm, covered in heated blankets. It felt like I was only asleep for a few minutes and magically placed in another room where a nurse brought me to reality by forcefully ordering me to Breathe Deeper! Your oxygen is too low. You need to try harder and show me you’re with me. Getting closer, she peers in my eyes. I had not realized she had been speaking to me before now. Gosh she’s grumpy. Here I am all cozy, staying out of trouble and she’s all worked up. Breathing. Pfft. Oh! Rubbing me hard on my upper arm, her words finally click in. Ah, I get it. In through the nose, out through the mouth so she knows I’m trying. She greets me. Realizing I can understand and respond to her words she asks if I know where I am.

I am moved to a room and the learning curve began. I saw my Ostomy for the first time. Walked that evening. Learned to empty my bag. Switched from liquid to soft foods. Learned to change my Ostomy. Walked more. Changed my Ostomy all by myself. Felt good enough to wear sweat pants and began to learn how to wear an Ostomy under clothes.

During that time I transitioned into myself. Life really did get better.

No more pureed food. Woo Hoo! Real food tasted so good it was downright colorful washes of happy, tingly euphoria to eat again. I went to the beach, water park and had more energy at school. I helped my friend buck hay (much to the chagrin of my surgeon) and even went to a couple school dances.

And that’s where my story leaves off.
That was my first Ostomy.

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.

Of Course Ostomates are Sexy!

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.)

DUH!

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.

Sick but lovely
Because it isn’t always pretty.

Gratefulness is Beautiful

 

 


Looking good while Rocking my Ostomy and learning a bit about Autism.
There are some things I just know. Undeniable facts that the rest of my world revolves around. For instance, I know for a fact that you don’t have to be big or powerful to make a change in the world. And I fully believe that gratefulness is the key to happiness and success. However, it is not enough to simply BE grateful. We all need to take that next step. Show gratefulness with our words and actions.

To that end I am starting a Gratefulness Challenge. My first Gratefulness Challenge is going to be just that. A Challenge. It is meant to stretch your limitations, and in the end free you. Once you remove yourself from your safety zone and step outside that box; you will see how many people are just like you. You are not alone and the world will like you just exactly the way you are.

So, are you ready? Here it is:

Take a photo of yourself with your scars and or Ostomy and post it on Girls with Guts. (Ladies only for this page…keep reading to the end guys) https://www.facebook.com/?ref=tn_tnmn#!/IBDgirls?fref=ts  When you post your picture, list something you are grateful for.  It is that simple.

Why?

Girls with Guts has a great mission. They are a non-profit that promotes self esteem and confidence for girls of all ages with IBD. Girls with Guts is run by Jackie and Charis, two strong IBD awareness bloggers. They pour their heart and souls into uplifting others and outwardly expressing their acceptance so that IBDers may delight in their own skin and be supported in that very same endeavor. GwG offers an environment where, through encouraging and nurturing others, self love is fostered.

GwG features articles from actual IBD thrivers, highlighting inspiring people living and doing amazing things.


They also have an etsy shop with carefully crafted items whose profits support their movement to promote self confidence and self esteem for IBDers and Ostomates.
I am in love with Girls with Guts because the entire page is an expression of gratefulness and self acceptance; done with tastefulness in a very public and supportive arena where everyone is welcomed.

I am grateful to Jackie and Charis for creating a supportive on line community. I am encouraged and inspired by the stories and pictures that IBDers post on the GwG page.

So if you are up to the Gratefulness Challenge, please join me by posting a picture of yourself with your scars and or Ostomy and list something you are Grateful for.  Posting your picture will show that you are happy and beautiful, confident and sassy.  Others will see your picture and be inspired.  Your one act of stepping out and sharing will impact someone who may be struggling to embrace themselves as wonderful.  You will be showing gratefulness, encouraging others, supporting a great page and breaking out of your shell all in one step.

If you are excited enough to want to post your scar and or Ostomy picture on my Facebook page~ CrohnieBolognaIBD  https://www.facebook.com/?ref=tn_tnmn#!/CrohnieBolognaIbd(Both Ladies and Gentlemen welcome) Don’t forget to list something you are grateful for.

 

ONCE UPON A TIME


Once upon a time there was a Mom who rushed around excited to get ready to go to a party. Kids dressed, last minute present bought and wrapped and actually arrive on time. Woo Hoo! 


Once there BBQ salmon burgers, corn on the cob, hot dogs for the kids, home made salad delightfulness, cupcakes and punch all laid out in a cowboy theme make you glad you didn’t eat before you arrived. 

In taking the eldest child to find the potty, Mom realizes the tiny bathroom for guests is right by the front door / living room area where all the Moms with babies congregate to nurse and chat.

Said tiny water closet has NO ventilation OR windows!!

Let’s not freak out the infants with poo fog rolling out the loo.  
1) It’s rude.
2)They would know it was me!!!

*sigh*

Taking one for the team.

No food for Mommy.

Nothing in = Nothing out.

The End.

For those who insist on happily ever afters I’ll give you this:
Thanks to IBD I have extensive practice in pretending I ate when others didn’t see, already fullness, practically bursting and I can artfully describe in great detail how delicious a food is that I have never eaten.
In addition, I can casually carry a water bottle and nurse that sucker for all it’s worth.
All part of my secret IBD super powers.

A Very Happy Ostomy Day

I sure hope everyone out there had a great Ostomy Day.  We celebrated as a family which was quite fitting.  Without my Ostomy I would not be a wife, mom, sister, daughter, grandchild, friend or Crohnie Bologna.  Ostomy Day is really Life Day.  I am one of thousands of people who would be dead if it weren’t for the miracle of Ostomy. 

I have had three Ostomies in my life.  The first temporary Ostomy was when I was seventeen.  I was a waif weighing just over 90 lbs in poufy home perm hair and ginormous glasses.  Young Me was trying so hard to look and be normal, but failing quite spectacularly.  I was so sick prior to surgery that I wasn’t able to do ordinary teen things.   I spent more time at local hospitals than I did in High School.  Peers would call me AIDS patient and Cancer girl.  They would put wads of paper in my hair and some even threw rocks at me chanting hurtful slurs.  Being slammed into lockers and ping ponged between larger boys was unfortunately common and humiliating.  Yep.  Life back then in all aspects sucked big time. 

After surgery life got much better.  I was able to attend school dances, go to the beach with friends, go shopping with my sister and even buck hay.  Thanks to a special front office staff, school counselor and a great Principal that helped me in incredible ways, I was able to graduate on time with a horrid GPA.  That little blue dress I wore under my cap and gown had a 1990s era Ostomy bag under it and no one was the wiser.  I felt really beautiful.  I was proud with how far I had come.  I loved my Ostomy.  Soon after, the Ostomy was reversed into my new J-pouch.  I was now a J-pouch girl.    

My second Ostomy was after the birth of my daughter.  I had a fistula that had gone undiagnosed for three months.  It was excruciatingly painful and completely debilitating.  The Ostomies job was to relieve the area so the fistula could heal.  At this time my diagnosis was changed from Ulcerative Colitis to Crohn’s Disease.  It was also the beginning of a year of pain, illness and multiple hospital stays.  In addition, I had a deep wound that took almost that entire year to heal.  Looking back, this year was focused primarily on the goodness of our daughter while in the background, managing rampaging Crohn’s Disease as quietly as possible.   It was very difficult on our marriage to balance the needs of an infant, husbands work life which had changed towards the more stressful side, and storming Crohn’s Disease.    This was my least favorite time with an Ostomy.  However, it was the most needed as I had several health challenges that only an Ostomy could have fixed. 

My third Ostomy is the permanent one happily hanging out on my side right now.  What’s that saying, ‘Third time’s a charm?’  I agree!   

It had been five years since my last Ostomy and reversal.  I was living with an anal stricture that had to be manually opened every other day.  You would think that sort of pain becomes normal.  Unfortunately, it was fresh and new every time.  My J-pouch was failing.  I went into my surgeons office not feeling quite right.  I was in pain and certain my stricture was having troubles.   I was at the point where I knew I could not continue to live this way.  I told my surgeon I was ready for a permanent Ostomy and presented her with the facts of what I had been living with.  She agreed to a two part surgery.  The first to fix the stricture and let me heal, the second to place the Permanent Ostomy.  Only after surgery did I know how bad it really was.  The inner lining of my J-pouch had separated and got stuck in the stricture causing that section to develop gangrenous necrosis.  The dead material was removed and remaining tissue sewed back together to reform the J-pouch.  My stricture was surgically opened.  I recovered for two weeks then went in for my Permanent Ostomy.  I was so ready to be Permanent.  The pain was cruel and constant.  It stole sleep, joy in eating, and energy.  It was cracking my ability to keep up with my children and appear normal to my friends.  My husband was suffering, my kids would eventually discover they were missing out on an active, healthy mom.  I saw Ostomy as a bridge to health.  If I continued as I had, I may not catch the next infection or rotting part of bowel or burst bowel again.  My health was in such a low state that any further complications would have killed me.  My husband and childrens lives would be shattered.  They deserved better.  I deserved better.  I could not be a Permanent Ostomate soon enough. 

And so here I am two years later celebrating Ostomy Day, Life Day. 

The celebration started with welcoming my husband back from a week long business trip.  There’s nothing like being around people who love you exactly as you are.  I stood back joyfully watching him absorb his children as they both entwined their bodies around his limbs.  Chatting at the same time, excitedly expounding, punctuated with spontaneous hugs and kisses simply because they can; my lovelies reacclimated and settled back into their natural world where Daddy is home.  

Because of my love of all things outdoor festival, especially the Oktoberfest, I couldn’t imagine a better way to celebrate Ostomy Day.  We strolled hand in hand enjoying shaved ice, sausages and corn on the cob.  We explored a retired and restored train, with plans to go back later to thrill our wee ones.  There was street yoga and crafts, costumes and a life sized pirate ship complete with mast, crows nest, and sails in the middle of it all.  Posing for silly pictures throughout, we enjoyed each other, grateful for our peaceful little family.

It was a perfect Ostomy Day.

Lions and Tigers and Bears Oh My!

I’ve been cruising around the internet looking up IBD/Ostomy related topics and have run across some pretty useless and disturbing products.
 As someone with Inflammatory Bowel Disease and an Ostomy this is frustrating on several levels. 

1. It assumes there’s something wrong with you.
For Ostomates, many of these products suggest or work on the idea that you need to hide or alter your appearance, and in some instances your stoma itself to be ‘normal’.   There are loads of contraptions, even a plastic gadget designed to alter the function of your stoma with the end goal of ‘normalcy.’

For IBDers symptoms such as cramping, bloating, frequent bathroom use and social embarrassment are highlighted or lampooned depending on the angle of the sell.  Painting IBD as a whimsical characterization of itself and making its symptoms seem overly dramatic and inconsequential.  It downplays IBDs seriousness, paints us as hypochondriacs and places us firmly in the ‘Not Normal’ category.

Yes, to everyone else what IBDers go through may not look ‘normal’.  I get that.  However, I affirm that we are normal people who go through extraordinary experiences so we may carry on with our fabulously normal lives.  Normal.


2. Plays upon fears or assumes you have fears.
Only a true snake in the grass feeds off the insecurities and fears of a community of people who are predisposed to the notion they are something other than normal due to years of illness.  We are conditioned by pain, hospitalizations and for many, surgery, PICC lines, IVs and the intimate knowledge of the working aspect of hospitals.  For most, these experiences make you stronger and more resilient.

What these companies are hoping for is to use fear mongering to create the illusion that their product will fix you.  They are fishing for desperation in a pool of people living with disease.  Unfortunately for some it can be an easy sell.

3. Puts down Ostomates and IBDers with shaming language and negative connotations.
Some products are presented on top a pile of derogatory messages.  The words ‘unhygienic’, ‘unnatural’, ‘depression’, ‘anxiety’, ‘reduction of pleasurable activities’ and let’s not forget ‘old’ (as if that were a bad thing) to imply that being an Ostomate is unsavory at best.

IBDers are referred to as weak, gassy, toilet bound, diarrhea ridden, and potentially smelly people in constant fear of crapping their pants.  Zero mention of remission in sight but for the ‘total cure’ offered up by the current charlatan.
 
Setting up the idea that both IBDers and Ostomates are freaks, ugly, unsexy, gross and smelly goes against our most basic need to fit in and blend in.  No one wants to be looked at as unattractive.  Yet that is the pivot point of so many vendors. 


4. Puts forward made up or false ‘facts’.
These deceitful nuggets got their start as stereotypes and misconceptions of the general public from long ago or were simply made up.  The stereotype has never been corrected and so it stands.  The made up bits are allowed to run free because lies on the internet in today’s world are hard to erase. 

It’s simply the over exaggeration of the unknown used against us.   For example: suggesting that Ostomates need to always carry a kit, stomas are loud and should always be muffled and emptying gear takes long periods of time.  Stating that Ostomies are bulky and or confusing equaling a poor quality of life undercuts your efforts and demeans your value on purpose.  Swindlers have designed it to be that way.  If you don’t have a fear, there are plenty of con artists willing to introduce one to you.  These false facts come off looking true to someone who doesn’t know better.  These are the statements that could very well discourage any person researching Ostomy as a life saving surgery.  To me, that is unsavory at best. 

5. Puts down current knowledge and technology.
For those with IBD, beware of snake oil…or emu oil… or oil from a frog indigenous to a far off and exotic country that will ‘cure’ you.  Just to cover all bases, the cure to IBD does NOT come from a chicken, the tears of unicorns, or warmed up stones placed ‘just so’ on X Y Z body part.  Just sayn’!  If that were the case, someone would have won a Nobel and had their interview with the ever talented Anderson Cooper by now.

Boosting products by claiming current meds, equipment and accessories are obsolete or ‘less than’ while offering up an untested, incomplete product is ignorance incarnate.  Current treatments are on the market because they have been tested and known to work for a large part of the population.  Putting down approved and prevailing information to boost your product does not prove that your product actually works.  As a consumer, I become suspicious when a company undercuts its competitors with words versus just showing how amazing their product is. 
 

6. Plays the ‘magic’ card aka Dangling Hope

*Exotic secrets shared with you only when you order this magical product in the next 30 minutes.  

Act Now while supplies last!  


*Eat this Sparkle Diet known to cure Cancer, Arthritis, Chicken Pox and Irritable Bowel Disease.  Plus after you shimmer!

*Buy my special book, video, class etc. providing essential information on natural cures that ‘They’ don’t want you to know about.  


*This Dr. Oz approved treatment will cure….. (Dr. Oz does not endorse or put his name on any specific product.) 


There is no plan. No ‘They’.  No ‘secret’ that is being kept from you.  Neither that advertisement on the internet nor the commercial on TV offering a magical solution to cure your IBD will help you more than the right Gastroenterologist will.  Paid actors dressed in lab coats sitting in offices are all scammers with a plan to take your money in trade for disillusionment.

Beware of the tricks and the tricksters my sweet Bolognas.  Check your sources.  If a company is valid they will stand up to scrutiny.  Collect questions and pose them to your Gastro team.  Look them up on the internet to see how many complaints they have.  See if they operate only from a PO Box.   Put up your red flags and ask for help from family and friends for verification.  Companies that are preying upon you using fear, hope, new technology and lies to sell you product are not there to help you. 
Stay away from the snake oil peddlers. 
Be careful. 
Be safe.  

Happy Ostoversary to Me!

In the first pic I had surgery the week before to remove gangrenous tissue from my j-pouch and was healing so I could be healthy enough to have permanent Ostomy surgery in three weeks.  I had spent the summer sick with IBD flares and pretending not to be.  Kindergarten was starting soon for my daughter (I was homeschooling her) so my husband and I wanted to do something fun with our children before the school year began.
 
Being from Oregon, camping sounded fun.  We had not done our traditional summer activities, and of them all, we did not want to miss out on camp fires, sleeping amongst the trees, hiking, exploring the forest and the nearby river.

I knew I was in bad shape.  I spent much of my time near our tents and in the loo.  I brought pain meds that were ineffective against the combination of activity and recent surgery recovery.  My strategy was simple.  Smile a lot, take loads of pictures, stay in camp and rest while my littlest napped and my older child gets one on one time with Daddy.  Suck it up and tough it out.  Participate and be present for my family.  

My husband was a trooper.  He did most of the work of setting up tents and building the fire, fishing and hiking with our kids.  I joined in everything but needed lots of breaks, both for rest, pain and restroom.  He never complained once or suggested that I was not doing my share.  In the evenings we would sit around the campfire that he built and roast dinner.  He set me up in my fancy lounge chair and made sure I got rest. (I am seriously wealthy in the kind, generous, thoughtful husband department.)  

In this picture I am pale with dark circles under my eyes.  I am bloated and swollen.  At this point in life I was in so much pain that I wasn’t really able to sleep.  I was pretending to be healthy and not fooling anyone.  My 5yo could tell something’s up with mom in the evenings when I was super exhausted and switched to picture taking and cuddling, as those are low impact ‘normal’ Mom things that I could pull off.

This picture is difficult to share because I look at it and remember the pain and frustration.  I was trying to absorb all the goodness that I could from my husband and kids because approaching surgery is always a very real and scary reminder of my mortality.  I was working double hard to try and make happy memories and leave a positive imprint at a time when IBD had sucked my body dry.  I was soul weary and grappling with anger and the injustice of how easily Crohn’s Disease walks in and takes whatever the F**k it wants.

At this point I had not told my friends about my surgery or that I was scheduled to be a permanent Ostomate.  I was living every day purposefully putting Crohn’s Disease on the back burner – showing with my actions that I refused to lie down and wallow with it.  ‘I’m taking my kids to the park!  I’m hosting play dates and making crafts!  Take that Crohn’s!!  I’m living my life despite you and to spite you.  Oh, and by the way, Suck It!’ That was my attitude because to do anything else would have been giving up.  If someday Crohn’s Disease wins, I want my family and friends to look back and see that I fought hard.  Always.  Especially when it felt all up hill.  

Pictures during flare times are hard.  But also a good reminder and a great visual of what pain looks like.  And what fighting looks like.

In the second pic I am all ready to participate in a GREASE sing along with my friends.  I am two and a half weeks post op and this is the first mom night out event that I have been to since becoming a permanent Ostomate.  My friends had made the half laughing, part silly suggestion that I should be ‘Bad Sandy’ several weeks before I even knew I was going in for surgery .  Challenge Accepted!  From that time on I had been collecting the parts for my GREASE sing along outfit.  I was ready to go.


Weeks later…..at my surgeons’ office, two heads bent over calendars negotiating the date of my permanent Ostomy surgery, and there I was determined to keep a night of singing with my friends viable.  In pencil the 6:45 MNO GREASE Sing Along square was already filled into my calendar.  I remember looking at that date knowing I would fight to be there.  It was awfully close to my surgery and I even asked my surgeon if I would be ready to go in time.  To her credit, she didn’t look at me like I was crazy, but said that it would be a close call, and anything was possible.  In my mind that equaled a ‘Yes!  If you work hard.’ 

And so I did.

Between home schooling, play dates, Ostomy Nurse visits and Post Op check ups the big day was there before I knew it. I spent actual makeup and hair time in the bathroom.  Something I generally reserve for special occasions only.  I felt excited and giddy to walk out and show Ben my look.  His reaction made me even happier as he pretended to scrutinize while finger tapping his chin, then with eyes laughing, gave his approval.  Part relief and part Wow!  He took pictures and suggested silly poses.  It felt very prom-esque.  I was glowing with happiness and floated around, buoyant from the feelings of joy, pride in accomplishing being well enough to go, feeling pretty, doing a masterful job of concealing my gear, and impressing my husband. 

I had been looking forward to this night and saw it as a reward and a sort of re introduction into my new life.  It was an evening to celebrate feeling healthy, having more energy every day, doing purely joyful things with my awesome mom friends and feeling lovely again. 

As I got to the theatre and sashayed in it was like stepping into a GREASE time warp.  Guys and Dolls dressed in 1959 inspirations were excitedly chatting and looking for their places.  Pink ladies abounded and leather jackets dotted the crowd.  My friends found me and we were soon singing, and clapping, dancing and admiring each other’s costumes and having loads of dressed up ‘50s fun.  We continued the night at a local restaurant where we visited some more.  I looked around the table at my mom friends, these marvelous ladies who let me love their children and they love mine in return.  Beauties who accept me for who I am and are the definition of unconditional love.  I marinated myself in a well earned joyful night and came home to a husband who wanted to hear all about it.  Because he too was eager to have his healthy wife back.    

Today is my Ostoversary.  Part celebration of a healthier life thanks to my Ostomy.  Part reminder of how hard I worked to get here.  Large dose of gratefulness for the people in my life who love me exactly for who I am.   

Community

 

This weekend I was in Costco.  I noticed a fellow Ostomate.  I could see his bag quite clearly through his sheer dress shirt.  I said nothing, but made eye contact and smiled as I walked by.  (Anyone who knows me would categorize this as very subdued behavior on my part.)   I am generally a super friendly person, and love talking to people.  Yet I felt myself pull back from greeting him.  I had a dual realization.  Privacy versus Community.  This was an elder gentleman.  He could have been my much, much older father.  I know certain generations and cultures can have a more shielded sharing pattern when it comes to ‘body issues’.  Some would attribute it to privacy.  As a member of the more open set; it comes off as a shade of shame.  Eradicating Ostomy shame is one of the reasons why I advocate.  So right there I wanted to be careful of this man and any privacy needs he may require.  Besides, just because I saw his Ostomy, does not mean that I get to high five him about it. Right?  Perhaps he did not even know it was showing.
I also understand privacy in the context of going about normal life activities.  Allowing yourself a form of freeness.  When I am balancing motherhood, groceries, and play dates, I’m not really thinking about my Ostomy.  I am at a place of peace with it, and only notice my Ostomy when there is an occurrence that directly points it out, or if I have done something silly to highlight its existence.   
It got me to thinking.  If I had said, ‘Hey Fellow Ostomate!’  Would I have interrupted his day?  Would he have felt a positive connection? Or would I have been a strange, over observant intruder in his afternoon?  Even though I could totally see through his shirt, his Ostomy really is none of my business.  But then I began thinking about Community. 

One thing about having an ‘invisible’ disease is that normally no one would know.  I feel like I belong to a secret club.  I tell people about Ostomies all the time in the attempt to break open the doors. But that does not mean that every Ostomate is on the same page.  As Ostomates, I know not everyone went in certain that this was the best step.  Some of us went through rough transitions, lengthy health struggles, body issues, wound issues, and some had no choice at all. 

No matter how we got here, we all belong to the same Community.  Whether you like me or not, I feel a kinship to you because you are one of the very few who knows exactly what it is like to wake up one day with a bag on your side for the rest of your life and your butt hole in a scientists lab somewhere under examination for  cellular irregularities.  Just knowing you are an Ostomate, in my mind, makes you special. 

I do know for certain that when I have been out and about and someone has noticed my Ostomy, I have done my best to make a positive connection.  It’s true, I have had to answer a few odd questions, and at times stick up for myself to the ignorant.  But those are rare in comparison to the inquisitive, intelligent, and the curious.  I see a strength in each one of us that should be shared.  Our struggles and triumphs can inspire and help each other.  That is Community.  But I cannot expect that Community view from a stranger at Costco. 

So, I am going to say to you, “Howdy fellow Ostomate!!  It sure is fine to see you today.  Let’s break open the door and build Community together.”

Unexpected Ostomy Advocacy Moment Thanks to Motherhood

When being a monkeys’ mama isn’t so cute.

Yep, I was mortified by my gigantic 3yo son today. He threw a fit in the library and wanted up. We were almost done checking out books so I picked him up and continued. Only a few more to go! I began checking books out double time. Being held didn’t do it for my lil guy so he throws himself backwards, arms up and howling. Only two more books to go!!

I attempt to put him down. On the way down he goes to grab my shirt to climb up but instead yanks my skirt down in the front. The woman in line behind me and her teenage daughter got full view of my underpants (thankfully I was wearing cute clean ones) and my slightly filled Ostomy bag. They stared open mouthed and wide eyed at my state of exposure. At this point I could feel my face burning with embarrassment and frustration at my situation. I unhooked the small hand that was still yanking my skirt down with his temper tantrum fueled death grip, and made myself decent.
I checked out the last two books, crammed them all in my tote, and turned around to see the mother daughter duo still staring at me.
At this point I am unsure if she is staring because I feel like a winner for the Awful Mother Award or because of my Ostomy. So I cover both bases and say, “Yes, he is huge, but he is only a three year old at the end of a very busy day. And that thing on my stomach is an Ostomy bag. It is the result a life saving procedure that I had so I could continue being this monkeys mama.”
Making light and calling my tempering son a monkey seemed to help. Also, as a fellow mom, she had to look back and remember surviving her own temper tantrum days. In addition she had to have noticed my mortification with the exposure as well. The mom was very kind and wished me luck as her teen stood quietly by.
My brood and I trudged to the car and buckled in. On my way home I hoped that I represented Ostomates in a good light. I also promised myself quiet alone mommy time with my book and a glass of wine.

Happy Ostomy Pride Day. Lets Be Heard!

 

My family sporting Ostomy pride!

Because I will be traveling to another state I submit this early:

HAPPY OSTOMY DAY!! Lets Be Heard!

I do not stand alone. I am a member of a family. We are all touched by the benefit of an Ostomy. Because of my Ostomy I have been able to stay a wife, mom, daughter, sister, and friend.

Thank you Ostomy. I live and love better, longer and stronger because of you.

Lead by Example

All three of us in the waiting room having fun.
Being a parent with IBD means showing with your actions what good self care looks like. Here I am in the waiting area of my Gastro Surgeons office with my kiddos. My kids know mama goes in to make sure everything keeps going well with the ‘tummy bag’.  Today they came along for the ride.

The check up turned out great. My surgeon and I got so caught up in wound talk that we never got around to going over releasing my very restrictive 20lb weight limit, or sexual activity. Must get clarification ASAP!

(Yes, I am sporting my Great Bowel Movement hoodie. Even the coffee guy asked what an ostomy is Yay :D)

Educating one person at a time.

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.

Dehydration and Ostomys

Dehydration

 

Lovely Pacific Northwest

 

As ostomates, it is important to maintain the right balance of fluid levels, sodium, and electrolytes.  Dehydration can sneak up on you quickly if you are not careful.  With a few easy steps you can continue to stay active while leading a full and fun life.

Signs and symptoms of dehydration are:
*Dry mouth
*Dark urine or less urine
*Dizziness
*Increased thirst
*Exhaustion
*Diarrhea
*Headache

You can do a lot to help yourself maintain proper hydration levels.  Avoid foods that increase output such as raw vegetables, dried fruit, fruit juices, and caffeinated beverages.  As ostomates our output can be looser than someone with an entire digestive tract.  Once you learn what your ‘normal’ is, watch out for stool that is unusually loose for you.
Try to stay as healthy as possible.  Sometimes the flu or another bug can cause vomiting and diarrhea.  This double loss of fluids can put you in the danger zone very quickly.  Be sure to be extra aware of hydration levels when you occasionally become ill.
Over exerting yourself can put you behind in your hydration.  Activities such as exercise, travel, or even something as benign as helping a friend move can lead to dehydration.  Please stay as active as you reasonably can while taking steps to hydrate along the way. 
Be careful on warm days.  In addition to our output we also loose fluid through sweat.  It is important to stay vigilant with your fluid needs even if you are slowing down because of the heat.  It seems reasonable for someone working outside in the hot weather to take a break to replenish.  However, even if you are at the beach with cool water and a gentle breeze, you are still sweating.  Remember your fluid needs may increase as the temperature rises.
Thankfully, staying hydrated is simple.  Drink plenty of fluids, 8 to 10 glasses per day comprising of water, Gatorade, Pedialyte, coconut water, or other electrolyte, sodium rich sport drinks.  Limit intake of caffeine as it is a diuretic and contributes to dehydration.  Many ostomates travel with a refillable water bottle to ensure they are never left high and dry. 

Warning!
If dehydration symptoms persist or are accompanied by cramping, vomiting, nausea, pain, or low to no output from your stoma, please seek medical care right away. 

With the right balance of liquids you can continue to stay active, healthy, and safe. 

Interview with a Six Year Old

Interview with a Six Year Old



Grace 6yo and Sean 3yo.  How lucky I am to be their mom.



I am a mom.  I love my children dearly and care about what they think.  My kids are smart.  They could see that their mom was not well.  To tell them to not worry and give them no further information would cause them to fill in the blanks themselves.  This would lead to unnecessary stress and worry.  I have tried to always be careful about giving accurate yet age appropriate information.  I stay open to their questions and conversations.  Recently I turned the tables on my six year old to see her view. 

Q- Who are you?
A- I am Grace.  I am six years old.  I like to swing.  I like to help make dinner.

Q- Who is in our family?
A- I have a mom, dad, brother and a dog.

Q- What are our jobs?
A- Mom stays home to cook, clean and do lessons with me.  Daddy works at an office and makes bridges.  My job is to do a good job in my lessons.  Brother’s job is to have fun and use the potty.  We all take turns feeding the dog.

Q- Do you remember what it was like before mom’s tummy bag?
A- Yes, mom had a hard time going to the bathroom.  She couldn’t play a lot with us and stuff.  But she read us stories and played puzzle and blocks with us on the floor. 

Q- How did mom get better?
A- Mom went to Dr. D and got fixed up.  She attached a tummy bag to moms’ tummy.  When mom was asleep Dr. D put it on there.  Moms gonna have it forever and ever.

Q- What is a tummy bag?
A- It is a bag that hooks onto your tummy and you poop in it.  There is a pink thing in there that the poop comes out of.  It doesn’t hurt.  There are big bags and small bags.  I like decorating them with my mom.

Q-What do you think about moms tummy bag?
A- It’s cool.  I always know mom has a tummy bag but I mostly see her as just my mom.  Most of the time I forget she has it.  She is the only mom I know that has a tummy bag and that is awesome.

Q- Is life better for you now?
A- Yes because we can do more fun things.  It’s like that whole bad part went away and I have my mama back.  That’s the most happiest part. 

Q- Do you think it was a good idea for mom to get a tummy bag?
A- Yep, mom can do more things with us and she will not be sick anymore. 

Q- Do you have any advice for other moms or dads who might be thinking about getting a tummy bag?
A- You can get rid of the pain and you will be able to run, jump, play and swing.  It’s okay if you get a tummy bag.  Your kids will still want to play with you.  It will make you feel better.

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.