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Crohn’s

You Don’t Get A Vote.

Just a little after class sitting in my garden. Like ya do.

So I had an experience this morning that served as a great reminder.

It was 7:45 AM. I just got done dropping kids off at school with all that goes into that. Got myself to school on time and was feeling great about that. Heading into class I received a solicitous comment of:
Wow! You really NEED makeup.
I was caught off guard.
What the what now?!
My reply: ‘You don’t get a vote.’ as I kept on walking.
I could have explained myself. But I shouldn’t have to. I could have educated her. But I didn’t have time nor was I in that mind space.
But it’s a great reminder and good reply to have in your holster. No one gets a vote about your appearance or the right to define what your best efforts look like. Period.
You know you’re trying your best. Your best, no matter what that looks like, is good enough. And no one else gets a vote.

Apparently this is the face worth commenting on.
*Taken just now in the garden as I typed this up for you.*

PS. Aging is natural and highly recommend.

Janssen #BioExperience Tour

Recently I was lucky enough to be invited to attend a #BioExperience hosted by Janssen Biotech. It was a day of touring the facilities where Remicade is made and an opportunity to speak to the people who develop, create and produce this complex product.

Bright and early we headed on over to the Janssen R & D Spring House Campus, where research and discovery happens. It’s a large stone facility with three flags proudly flying out front. From there we were welcomed to a conference room where the presentation began.  No pictures were taken beyond the room out of respect and privacy for the scientific process and the people who work there.


^^I felt like Charlie going into the Chocolate Factory! So much science ahead. My inner nerd was jumping for joy.

And so our insider’s view into the complexities involved in developing biologic therapies used by millions of patients began. We learned about immunogenicity and interchangeability.  We discussed the steps taken to ensure consistent product and why pharmacovigilance plays an important role. Biologics, biosimilars, new ways of including people into studies that were once excluded, microbiomes and the varied ways genes play a role and the connections Janssen is making in that arena. Janssens’ focus on precision medicine with an emphasis on interception, prevention and cure as the goal. The word cure was actually used and the thought of what that would look like was spelled out. Advocates were asking questions, getting answers, and asking more. We were gathering information, confirming then clarifying, all taking in as much as possible.

^^Dr. Plevy answering questions. We seriously got to ask anything we wanted.
Table meeting image thanks to Tonic_BioExperience. Used with permission.

Next we went on a walking tour to view some of the equipment used in research and development.
Labs right there in front of us with nothing but glass walls as separation. Beside, a whiteboard with hand written positive notes. Literal and figurative messages of hope surrounded us as we viewed scientists growing the field of knowledge before our eyes. I couldn’t help but to be inspired. I wanted to participate, give a sample right there and help by making sure these minds had the materials needed to succeed.

I know science takes time. You have to think about it in the scope of decades versus year by year. But this is happening now. It was a privilege to get a glimpse. It was like peering through a nursery glass at the hope and promise of a newborn.  Instead, it was all my aspirations for a really good treatment and eventually a cure, lined up in an orderly row on a laboratory counter top. I could envision a future where IBD is understood and treated more effectively from the very start.

Our next stop was the Janssen Manufacturing Malvern Campus. We met in a conference room for an informative discussion about the physical process of product formulation and manufacturing. This is where bulk batches are made from cell cultures, ensured of purity and prepared to package for use.

One way the medication is kept contaminate free is the process of gowning. Gowning is a multi step procedure that every employee performs to protect the product that is being made. Because let’s face it, we’re all a bunch of mammals with hair and skin and sneezes. We want to keep all of that out of the treatment that patients will recieve. It is every employees’ priority to keep the medicine pure for patient safety.

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^^So let’s go over the steps. First off, what you don’t see is the special shoes worn only in the area where meds are made. Regular shoes are shown here. Next comes a blue jump suit that goes over the foundation layer of scrubs and zips up to the neck. Then rubber gloves, booties over those special shoes, eye goggles and a head net are worn.

Next comes long slip on booties that go up to the knees and fasten with sets of straps to ensure they stay in place.

 

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^^Then comes more gloves. By now we’re thinking he is pretty covered. But nope, there’s more.
Next come more feet covers with more ties to keep them in place, a head covering that goes right over the eyebrows and down past the shoulders. After that, a face mask is applied.

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^^But that’s not all. Next comes a long white lab coat that snaps from the neck all the way down to half-calf length. Then comes a set of sleeve coverings that go up past the elbows. Finally, another pair of gloves completes the transformation.

Because we were an inquisitive bunch, we asked further questions about this process that you may want
to know:
*The whole procedure is to protect the medication from contamination.
*Employees are checked regularly to ensure they are up to date on safety (including gowning) protocol.
*Employees who are ill stay home. No working sick. (I wish everyone did that.)
*Also, there’s very little talking in the work area. The employees are singularly focused on making sure the product is made without distraction.
*The employees work in 12 hour shifts, much like nurses and other medical professionals.
*Between lunch, breaks and restroom trips, the average employee gowns 6 times per shift.
*The medication never stops process. To ensure continual availability, the lab stays in production 24 hours a day, 7 days a week.
* It takes 90 days from start to finish to complete a batch of Remicade.

Phones and cameras mindfully stowed, we left the conference room to kickoff our tour of the lab areas where growth medium begins and the purification testing process takes place. Dressed in lab coats and goggles we were welcomed into what I lovingly think of as Remicades’ kitchen – But way cooler.  As we walked through a series of rooms filled with shelves and tables laden with equipment, each step was revealed.  The scientists were excited to show us the techniques they use every day. Their enthusiasm was infectious as the process came to life through their examples and narration.

We ended with a video tour that showed aspects of manufacture regular people should probably not be invited to walk through. I appreciated throughout how respectful everyone involved was in regards to each other, the process, the equipment and the medication itself. So an interactive video that walked us through from a first person perspective was more than perfect for the last piece of our visit.

From there we wrapped up our tour with a quick meeting where we got to ask follow up questions and the extended offer to answer any questions we wished to pose in the future.

The day flew by in a swirl of information and discovery. Before I knew it the #BioExperience tour was over. It was educational, hopeful and inspiring. I went in knowing about the topic of biologics but was impressed at the level of thoughtfulness and dedication it takes to make it all come to life. I had moments where I began to imagine a different future for IBD patients. What will this disease-scape look like for my children and how will what we are learning now contribute to that? I was inspired to go home and learn more about what I heard. Several of the topics touched on aspects of conversations I’ve had with my health team and those closest to me. This #BioExperience was perfect fuel for further education. The fact that I got to attend with amazing health advocates was icing on the cake.

**Disclaimers:
1. Janssen Biotech paid for my transportation and accommodations. However, all statements and observations are my own.

2. The image of everyone at the big meeting table was from Tonic_BioExperience. I stated above in caption and in watermark on the image itself and now here. Giving credit is important.

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.

IBD Social Circle Whirlwind

Wow has life been a bit of a whirlwind. It was only a couple weeks ago that I attended the IBD Social Circle Summit. It was an amazing, uplifting and inspiring experience. I got to meet IBD advocates that I follow and admire for their educating and bare honesty. I tweeted at a live IBD Round Table which was amazing! Then there was a day of focus groups with best care for the IBD community in mind. And the finest topper of all was the honor of attending the premier of Ryan Stevens’ documentary Swimming with Courage & Crohn’s. If you have not had the opportunity to view this documentary, please do.

RyanDocumentary
Frank, Marisa, Amber, Ryan, Samantha, Sara and Dan. Panelists for the Swimming with Courage & Crohn’s documentary.

About a year ago on Lake Erie Swim 4 IBD Day and into the night I remember sequestering myself away with my lap top to capture any type of update and follow Sara Ringer’s posts as Ryan captivated us all in his grueling super human battle across Lake Erie to raise awareness for Crohn’s Disease and Ulcerative Colitis. #XErie4IBD. I sat there with my heart in my throat part cheering Ryan on, part nervous for his safety, a large part really proud. With that bystanders experience as reference I listened as panelists added further insight that served to paint a more vibrant picture of the days events. Ryan was already a beacon of hope within the community before the documentary. To see in stark detail was humbling, empowering, and powerful. The thoughtful preparation, determination, courage, and grit to do what Ryan did all to spread awareness about a disease and to give hope to others. WOW!

Zero dry eyes.

Janssen did a top job of reflecting truth onto film. Even more so, Janssen understood. You can’t make that kind of experience come alive if you stand separate from the cause. To see Ryan portrayed as the strong, raw, honest Crohn’s Disease fighter that he is, really mattered. IBD patients deserve that kind of dignity and respect. Janssen did that.

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IBD Family Washington D. C.

 

The next morning I hopped on over to the DDW and experienced its Gastro Health Mecca. A landscape of booths laid out as far as the eye can see, filled with people excited to tell you about their products.

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Next time I’m either hugging or voguing this thing. My photographer strongly discouraged such high-jinks. Darn!
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The future of Gastro care spread below. I can feel the excitement. Woo Hoo!

 

All too soon it was time to head home.

Quite a wonderful adventure for sure. One that was a dream come true on multiple fronts.

The whirlwind picked up again as soon as I got home with child shenanigans, volunteerism, visiting relatives and home buying. Eek! We’re buying a home!

Here I sit typing to you; existing half in boxes. Tomorrow I work as a team with my Hubby to transport life and family to the next phase of our adventure with as little chaos as possible.

If it fits, it ships...or something like that. Glad to be doing this for the last time in a long time.
If it fits, it ships…or something like that. Glad to be doing this for the last time in a long time.

And the whirlwind continues.

Because college is next!

#IBDSocialCircle ~ Tourist by Day

This is going to be a two part thing as long posts don’t really get read and the two halves of my day were so vastly different.  I went from tourist in a new town with a new friend to attending my first in person IBD Social Circle web chat.  I want to give proper attention to each.  So here’s how the day began…..

Day one I got to the Hyatt Regency Capitol Hill ahead of everyone else and was treated with a spectacular parade. It pays to get where you’re going a bit early sometimes.

Day two was when the rest of the #IBDSocialCircle participants arrived. The Welcome Reception was scheduled in the evening which gave almost an entire day to entertain myself. Fortunately Jen of Chronic-Crohns arrived early as well. Stephanie of Tonic introduced us via email (because she is friendly and awesome like that) and Jen and I hit it off right away. Jen has a Facebook page called Crohnic-Crohns where she shares her experience with abscesses, IBD and Ostomies. Such an easy going and funny lady to hang around with. So there we were, two IBD Explorers with map in hand, we took off on foot as D.C. has so many cool things to see that happen to be really close together.

Buckle up kids it’s Slide Show Time!!
I promise this is the one and only slide show for this IBD Social Circle ~ Washington D.C. adventure series.  Mostly because after this the tempo picked up and I really started soaking in the moments….and forgot to take pictures.  In fact, I wish I had taken more.  So together let’s enjoy some of the photos I actually did take.

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We saw the capital as it was undergoing some renovation.  Nice scaffolding.

 

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United States Botanic Garden Conservatory was like stepping into a tropical wonderland.

 

Fun fountains, statues and architecture.
Fun fountains, statues and architecture.  Is that a secret Hogsmeade shop?!

 

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National Air and Space Museum where we got our flight history and NASA fan girl action on!  Running around like kids in a candy shop walking through and taking pictures of space shuttle living quarters and checking out all things rockets, shuttles and communications.  Squee!!

 

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Washington Monument. This is what it looks like when you lay down and take a photo looking up. Because of course that is the very best way to appreciate the magnitude of this structure.  Cool stillness on your back slowing you down from the walk, bright sky against the dual colored stones climbing their way straight into the clouds.  Magic.

 

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Lincoln Memorial Reflecting Pool where history took a steep curve towards equality. This was constructed the year my Grandfather was born. So many great things can happen in the lifespan of a good man.

After all this fun Jen and I got lost a little on the way back.  In the end we arrived in perfect time to get freshened up, grab our supplies and head down to attend the evenings Welcome Reception.  I was about to meet the tip top of advocate awesome in the form of bloggers, vloggers, law makers and dedicated IBD supporters.  Excited, a little nervous and really hoping I would do a great job were the thoughts filling my head as I walked towards the group standing just outside the conference room.  Here we go!

Look for part two to cover the evenings events.

World IBD Day 2015

World IBD Day 2015

A while back I wrote a guest blog called 23andMe – Be a Part of the IBD Genetics Study for The Great Bowel Movement sharing my experiences with the 23andMe DNA test kit.  23andMe is doing a genetic study whose goal is to discover the building blocks that make up IBD so that we may better understand it, and in the end create better treatments and ultimately a cure.

A short time later 23andMe asked to use quotes from the article and images from my blog page. To which I responded with something like: “Go for it!”  Talk about following through.  So on this World IBD Day I was pleasantly surprised with this super cool Ta Da!  The image they created is beautiful.  And a pretty nifty thing for a kid from small town Silverton, Oregon.  I hope it helps boost Ostomate pride, IBD awareness and the ongoing efforts as an entire community to find effective treatments and ultimately cure.

So if you feel like it, go check out the 23andMe page, The Great Bowel Movements page and my article.  Perhaps you’d like to participate as well?

Glad To Be Back

Hello my lovelies! I’m glad to be back so I can share all the good nuggets with you. I spent most of the first day back napping, recovering and just starting to get caught up with everyone. What an exciting whirl wind of IBD Family and all things new and better for the IBD community. I am super excited for the future and can’t wait to share my experiences with you. I had the best time at the ‪#‎IBDSocialCircle‬ and exploring ‪#‎DDW‬ convention. There are just so many cool things to fill you in on that I will be breaking it up into different posts. But I wanted to first off say a thank you to Janssen and Tonic for making this trip possible. From food we could eat to making sure we got to our events, staying up and visiting late into the night and every tiny thing in between; we felt cared for like out of town family.

I also want to assure you that I kept my fan girling to a minimum as to not scare away the super awesome advocates that surrounded me at every turn. You would be proud of the self control.

And because this event was held in Washington D. C. I got to explore some of our nations great historical treasures with my new Canadian friend Jen of Crohnic-Crohns. Such a sweet heart. You should really go check out her page.

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Jen of Crohnic-Crohns in front of the Embassy of Canada. Check out those beautiful flags, Eh?

*Disclaimer~ This snap shot was taken later in the Washington D.C. IBD Blogger Awesome Adventure. But it was the only photo I took of the Lovely Jen as I was living in the moment so much I didn’t capture as many images as I later wished I had.

**Note to self: Must take WAY more pictures next time!

The After Burn

*Disclaimer:  Adult content and language.*

I think perhaps sometimes I share too much of the good.  Always push forward.  Always look for the light and fight your way there.  Fake it until you make it is something I have been doing since I was a pre teen.  As a person with Crohn’s Disease I find strength and comfort living in a way that negatively impacts my family, especially my children, as little as possible.  I feel powerful when I am able to make my life look effortless to everyone else.

parentingUnfortunately, my positive sharing has led others to believe my experience has been the Holy Grail of easy.  Well guess what, sometimes I go through things I don’t fully understand at the time.  Sometimes it takes a while to process my junk before I feel like sharing.  And sometimes my junk is so heavy and ugly that sharing feels like an unfair burden to put out into the world.

However, today I wanted to share with you about pain.  Not the normal pain ER docs see as drug seeking.  Or chronic pain we live with to the point where we’re really never sure where we fit on the 1 to 10 pain scale.  I’m talking about what happens when pain goes sideways and becomes something else entirely.

So I have my Permanent Ostomy Surgery  and everything goes swimmingly.  I’ve written about that before. (It’s really long)  Just days after procedure I’m home, home schooling my daughter, and loving on my wee son.  Life was on track.  I was walking around normal and physically better than expected, but a part of me was emotionally numb.  It was like stepping into a life that wasn’t mine.  Everyone else was the same but I no longer fit.  I felt foreign in my own life.  Impostor.  At the time I attributed it to this huge change I had undergone.  I gave myself slack and forgiveness for the learning curve I was going through.  I was being very understanding towards myself.  But still, I felt like I got off too easy.  I was getting away with something.

Being pain free after all those years, and surviving a near death overdose in the hospital was like finally being allowed to remove your hand from the flame.  It’s that immediate, jarring, lack of sensation.  I had been living pain for so long that its absence felt foreign and far too quiet.  I wasn’t giving myself constant pep talks of ‘breathe through it, it will pass, push through, you can do it’, because I didn’t need to.  In an odd way my inner compass felt too still.  I felt far too vacant inside without the pain I had grown accustomed to.  I didn’t know I had made friends with agony until it was no longer there.

Logically I knew that everything was the way it was supposed to be.  Still, I felt on guard and uneasy.  I realized I had never really been able to rest.  As in sit in a place, pain free, and really enjoy my surroundings.  And sleep.  God!  Sleep on a level I had not experienced in years.  I could actually sleep and wake rested.  But the peace and rest I craved so much at first felt unexpected.  I would wake up and be surprised at the length of time I had been out.  Defensive and wary.  Are you sure?  That many HOURS?!  It was an odd mix of disorienting lost time and surprise that I was actually able to do it.  I could sleep through the night.  And at the time that didn’t feel right at all.  This sleeping, pain free, resting thing.  I had been away from it for too long.

And if that wasn’t screwy enough, one day I was changing my gear, felt the sting of the Ostomy paste with its rush of pain…. and warmth.  Comfort.  Which was disorienting in that it was a magical mix of hurt like crazy and strangely soothing.  It was dizzying euphoria and fear.  Which threw me.  What the Hell was that?!!  I was the stranger looking back in the mirror, wild eyed and confused.  For a moment the hollow feeling was gone.  Oh Shit!  This is NOT right.

Much to my horror and curiosity I was bent by pain in a way I did not understand.  Pain felt good.  Really Good.  Like that loose body feeling after a massage.  I was no longer waiting for Crohn’s pain to come to endure against.  It was there in another form, and it had missed me.  And I felt Right for a moment because this is what I had needed and didn’t even know it.  The combination of this mis matched pair of experiences was unsettling.  It’s not supposed to work like this. I felt like a monster.  Well Shit!

It wasn’t physical health at all.  Physically I was doing better than my highest expectations.  Instead it was a slippery little thing that snuck in between the cracks and ambushed me when I least expected.  I didn’t know what this was called.  I had never heard of it before and I sure as hell wasn’t going to tell anyone about it.

painFrom danger to peace with no transition.  Emotionally like being forcefully thrown from the top of a building to the city below.  It wasn’t a purposeful choice; I was overtaken by it.  And incredibly ashamed for that weakness.

In my life I have been physically hurt in many ways.  Never was it comforting.  This new development freaked my frick out.  My job in life until then was to battle against pain, not secretly acknowledge it as relief.

I knew no way to help myself but to keep going.  In the opposite direction.  I poured myself into my life.  I overemphasized the things I knew in my mind were normal and good.  I focused on my family and parented the hell out of my children.  It felt like I was apologizing all the time.  I stayed away from pain and hated myself when it itched against the back of my brain.  It was a hard crawl.  I felt like an ass.  I felt betrayed by my own body again.  Was I a pain junkie?  Is that even a thing?  I was Pissed at Crohn’s Disease.  Again!  Haven’t I been through enough already?

I was so proud of myself all those years for shouldering the Crohn’s Disease pain largely unmanaged.  My doctors gave confirmations which bolstered my right thinking.  I told myself I was doing a great self service by avoiding stronger meds so at surgery time I had more pain management options.  I equated pain endured to accomplishments.  Even more so if, on the surface, I made it appear effortless to those around me.  In reality, the way I endured Crohn’s Disease pain turned into a trap.

As of today, years later, I have healed to the point where I still hazard an educated guess when it comes to the 1 to 10 pain scale.  Which has always been normal for me.  I am friends with pain in that I tolerate it quite well, but no longer miss it.  I used to miss it.  I feel appropriate levels of discomfort when injured.  I no longer feel like a monster, but do still carry a shade of regret and shame.  Regret that I know exactly how pain can twist and whisper soothing things to you, and if it happened then, will it happen again?

Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

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Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.

 

Boo!

Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

Gallbladder Surgery

The last couple of days I’ve been busy with surgery pre prep. This includes doing things like packing my hospital bag (Packing Video)

Prepping a week of outfits for my children.

Clothes for the week for the kiddos.
Clothes for the week for my kiddos. The littles wake up and put the clothes on their sleepy little bodies. Less morning stress for everyone = Win!

Thinking ahead about little lunches to pack.

Fruit cups to make lunches and snacks for the week a snap.
Fruit cups to make lunches and snacks for the week a snap.

And in the past I have even done this.

Food to eat while I'm away?  Check!
Food to eat while I’m away? Check!

And tidying my bathroom and closet/dresser. (Which happens to be nervous cleaning with the benefit of coming home to a clutter free, stress free environment.) And just making sure everything is set to go smoothly while I am away for a couple days.  Aka paying just arrived bills, make sure my volunteer time at the school is covered, make sure drop off and pick up times are written down for my hubby, practice speech with the little guy so it’s easier for when he practices with his Daddy, etc etc.
You get the drift.

The surgery that I am having is a gallbladder removal. My gallbladder has been a quiet offender for the last nine years.  It was hiding as mysterious pain that I passed off as overexerting myself or being a weekend warrior and unexplained increased liver levels resulting in unfavorably high numbers that over time magically resolved.  What finally helped us put it together was this last December I passed a gallstone which landed me in the ER. Yow, that was exciting!

Gallstone ER visit.
Gallstone ER visit.

So the deal with gallbladders is they help aid digestion by storing bile created by the liver, then releasing that bile, aka gall, into the digestive tract which helps break down and emulsify fats to help digest your food. Yay!

However, when your gallbladder gets cranky and inflamed or maybe tossing stones, is when things start going sideways. Stones can back up into the liver causing liver issues, which is something I am dealing with. And sometimes stones can back up into the pancreas and cause issues there as well. Also, as in my case, once stones start moving through, a bunch get together and decide to work their way out which is painful as can be. So that’s why I’m going in.

Much of the time gallbladders can be removed laparoscopically. Which sounds terrific. There’s less down time and a smaller incision. Very good things. But, if you’re like me, and you’ve had a couple too many abdominal surgeries, there is a higher opportunity for scar tissue which makes the laparoscoping (<—-Yes, I made that word up) harder than it has to be. In essence, it makes the surgeons job tricky in that scar tissue creates an obscured environment for her/him to see and maneuver to do the job.

So I’m having a standard incision below the ribs right above the gallbladder. This will make a straight shot in for surgeon to clearly see the offending area and do his/her job.

Laparoscopic versus open procedure.
Laparoscopic versus open procedure.  Photo credit: Surgeryinfo.org

This plan of action is good for a couple of reasons.

1) Scar tissue is a beast and I am Fantastic at growing scar tissue. I’ve even had surgery in the past to remove scar tissue. So I’m pretty sure there’s a bunch in there. I don’t want my surgeon to go in laparoscopically and then have to turn around and require standard entry. *Zero hitches in the plan!*

2) If the ducts that lead to the liver and pancreas need to be flushed, Voila!, there’s plenty of room to do that.

3) Another scar to rock on the beach! No, not really. But yes, really. For the damage this little gallbladder time bomb is turning out to be, removing it will be worth the battle scar. And let’s be real. I play organ favorites. I just like my liver and pancreas WAY more than a sputtering, malfunctioning gallbladder. So there!

4) The bile produced by the liver to aid in digestion will still happen. Instead of going through the gallbladder, it will empty into the small bowel to begin its digestive aiding job there. (Whew! Thank goodness I still have that part.) If I had a colon still, I may experience looser stools. As an Ileostomate, this is already the case, so less of an issue for me.  Score for being an Ileostomate!

Things I am going to keep in mind moving forward is diet. I am already an infrequent fatty food enjoyer. That’s one point for me. Plus we officially live 1000 miles away from my very favorite corn dog stand located in Otis Oregon. So in that regard I’m safe. But it’s those festival, Oktoberfest, onion ring, occasional joyful moments that I will have to be more mindful of. *Gasp! * Don’t forget ~ SUPERBOWL!! Well, it must be time to perfect those boneless hot wings. <—-See? I love food. And I will continue to do so thoughtfully.

In the end I am grateful that I am not having a bowel surgery. For ONCE I’m not going in for IBD. I am grateful that being an Ostomate is actually sort of helpful in this case. I am grateful that the surgeon doing my procedure is also top notch in Ostomates of all sorts. (Which is a BIG deal to me.) I look forward to improved liver function and no more painful stones passing. I am glad to be having this done at a time when the rest of my world is relatively calm. I am super grateful that my husband is able to take time away from work to care for our children.

Most of all I look forward to getting back to regular life. I have plans in action that I want to see through and a life that needs living with me at my best.

Ostomy Pants!

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.

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

The 23andMe Experience

 

23andMe-IBD-study-for-DNA-300x300So a couple weeks ago I was honored to be a guest blogger for The Great Bowel Movement – Awareness for Crohn’s & Colitis where I wrote about my experience participating in the 23andMe IBD DNA study, why it is an important step forward in research for our community, and why we need your help.

I was delighted when TGBM loved my blog enough to post it on their page and delighted all over again when 23andMe liked it enough to share on their media as well.

And so, I will post the article here for anyone who hasn’t seen it and ask that you consider participating.  Because you, my Sweet Bolognas, are important.  You matter with all your uniqueness.  You have all the clues for cure found through struggle and pain, resilience and hope.  You are vital in getting to the bottom of IBD.

With that I give you  23andMe – Be a Part of the IBD Genetics Study

” I am quite similar to many of you, in that I have participated in fund raising, educational events, studies, and testing for a cure. However, this study is a bit different. It’s the idea of looking at the root, versus symptom management and is in line with new DNA based thinking in regards to finding cures for diseases. 23andMe and Pfizer are working to shine a spotlight on IBD and giving us the opportunity as a community to participate in turning the direction of our own disease.

23andme-ibd-dna-study

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.

CCFA Fundraising Through Spin

This past weekend my super cool Gastroenterologist invited me to participate in a spin like Soul Cycle Crohn’s & Colitis Foundation of America fund raiser.

First off I was sold on the description of ‘Party on a Bike’ and something about glow sticks. ‘Scuse me, but glow sticks automatically raise the fun level of any event and ‘party’ equals good music.

All to benefit the CCFA? I love the CCFA!

This whole thing sounded like fun before I even got there.

Heck YES! Count me in.

So after a quick online registration to reserve my spot and prompt RSVP, I Googled what I had gotten myself into.

Indoor Cycling.  Thanks Wikipedia.

Oh yah, I can do this!

My plan was to go and have fun, but pace myself so I didn’t end up falling off the bike in a pile of limp sweaty exhaustion, promptly followed by barfing on the floor.
Reachable goals ~ I can manage that.

The ride itself was held at The Rush Studio in Carmel Valley.  A lovely location with friendly staff not too far from the beach.

I arrived a tad early to a bright, welcoming atmosphere where already jazzed people were visiting, contributing to the donation box and signing up for the raffle. Everyone was excited about the ride, seeing each other and supporting the CCFA. The ladies at the front desk helped me out with paperwork and shoes. In no time I was off to make my own donation, visit and get bedazzled with fancy glow accessories. I can see why people like to come to The Rush. It’s the perfect setting.

After stowing my back pack it was time to grab towels and water bottle then head on in.

As I was a rookie, I chose a spot in the second row next to a gentleman in a white shirt which I was hoping would glimmer under the black lights. Decked out in CCFA orange and blue glow necklace and bracelets, I familiarized myself with the bike and looked around pleased to see the studio mostly full. All cycles faced a mirrored wall where a platform with room for two bikes faced us, front center stage. The lights dimmed as instructor Beth and co instructor Dr. Tommy welcomed everyone with intros and synchronous stretching. And that’s when the atmosphere changed.

It began fast, fun and sweaty. Hey, this is all the awesome of bike riding without exhaust fumes and traffic lights. I’m really digging it. The electrifying playlist chosen by Tommy kept us excited about moving to upbeat rhythms that gave the event a dance club feel. What started out as festive turned into challenging and hot as the microphone amplified voice encouraged ‘Right, Left, Right, Left, Push, Push fast as you can. Harder!’

Momentum increased as the locked in spin shoes allowed for pulling up with one leg as the other pushed against the suggested resistance in a constant circuit of pressing past personal boundaries. Legs burning, tummy tucked in, I worked to coordinate lifting off the saddle in a push up formation against the towel covered handle bars. And then again boosting out of the seat, pumping legs, with one arm raised in the air in upward reaching movements.

Arms and back agreed with buns that spin is a legitimate work out much more comprehensive than the hill hiking I had been doing to make myself think I was fit. I was a fool. This kicks hiking’s ass!

It was easy to get caught up in the wave of determination. The efforts of those around me, the voice of the instructor and the beats of the music; familiar, lyrical words enveloped me in the dimmed room, encouraging to push past the burn and give more of myself. There was grunting and sweat. Pressing up and back so hard the bike rocked on the floor. Warrior sounds from a couple bikes over. This spin thing is no joke! Legs finally got over the initial shock as fire turned to warmth. Then what was beautiful discomfort became a rush of adrenaline and heavenly endorphins. I felt like a candle lit from within. This must be the magic glow that people who love spin talk about.

The pace increased as we moved through a series of stand n’ tap our buns on the saddle, up and down motions that made me aware of a whole different muscle group hiking totally missed. As the spinning slowed pace, we focused on arms. No body part shall be neglected!  As I went through the movements, I reasoned how odd it would look if all these lovely legs, buns, backs and tummies were accompanied by spindly arms and shoulders. Then promptly redoubled efforts to match the work I put into my lower half moments ago.

And then, almost abruptly, the class was over.

We did it! There was an odd sensation of time warp as somehow 45 minutes felt like 15. I high fived the steamy gentleman beside me and twisted my shoe out of the lock to hook my leg over the arm rests for the final blissful class cool down stretch.

We were thanked for our participation and the raffle winner announced. I took my first steps on legs that felt wobbly at first, finding solid ground again with feet that had grown accustomed to pedaling.

Looking around I could see these were not the same fresh participants swagged out in glow necklaces, glasses, and headgear that had started this adventure. We were a mass of smiling, red cheeked, champions.

The Rush Studio CCFA Fundraiser
After the fun. Can you tell we’re glowing?
The Rush Studio CCFA Fundraiser
And with the black lights and glow swag. How fun was this ?!

It was an empowering, affirming, CCFA goal centered team effort. I was so honored to have been a part of it.

And here’s the cool thing about it all. Spin lover or no, this was an example of highlighting your passions and living your happiest in a way that helps others. Dr. Tommy Yen used his love of cycling to support his love for the IBD community. Team Yen raised $300.00 that day for the CCFA, with more financial contributions added later.

Thank you to Dr. Tommy Yen. Way to go with all your awesome!
Instructor Beth Abramowitz of The Rush for leading all the fun.  You are way cooler than Wikipedia said you would be.
To my new IBD friend Ryan Hill. It was so nice to meet you.
And to all the other participants for spinning, contributing, and making the day a great one.

<3 Christy

Stoma Bruise

Living in a southern climate, in a home with zero air conditioning, it gets pretty darned HOT in our little rental house. So my husband and I got all brilliant and made our large family room into the ‘cool room’. Thank you to Costco, we were able to find just the right portable air cooler/de humidifier for a room that size. To maintain the refreshingly chilled atmosphere, we have draperies hung in the entry ways. Since then we have been enjoying the summer feeling comfortable and quite a bit clever about the whole thing.

Until yesterday.

Rushing around in preparation for kiddo swim class I was busily working on getting last minute water bottles filled and towels collected when I ran into this:

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The Culprit

This banister lives right on the other side of the cool room drapes. Turns out that it’s exactly the height of my stoma. Like it was planned that way, but not really. At any rate, I collided into this at full tilt.

Well Crap!  Not what I planned on doing today.
Well Crap!  NOT what I planned on doing today.

And straight to the floor cupping myself while I did some deep breathing. Then off to the bathroom to check that I hadn’t torn my stoma or caused active, hospital type bleeding.

Day two and already looking better.
Day two and already looking better.

In my self examination I noted: No laceration, yes my stoma was still attached to my abdomen, yes my stoma was bleeding from the abrasion. The bottom half was strikingly bruised, scraped raw, tight, lopsided and srunk in on itself.

Yikes was he mad!

I felt like I had been kicked in the guts, which was essentially the case. But more of an accidental self banistering of sorts. After applying pressure I got the bleeding to stop and was grateful it wasn’t as bad as it first looked.

I have run into my stoma before, but this time I did quite the number on myself. Here I am a day later and my stoma is still mad but healing rapidly.  The bruising yesterday was much darker.  The abrasions began to look better right away.  I’m thinking because of blood supply, guts heal from scuffs and run ins better than knees?  But I’m no expert on stoma injuries and don’t plan to be.  My little guy is still mis shapen and I’ll call it ‘dented’ in the area where it was hit hardest which didn’t show up very well in the picture.  But even that looks to be improving as well.  I’m guessing this will take the same time to heal as a regular bruise.

And here’s the deal. If I know I’m going to be moving again, or helping someone else move, stacking wood, volunteering for an activity where there’s a good chance I’m going to get knocked in the can, or other wildly fun activity, I happily wear a stoma guard. Or if I had a job where I would be repeatedly irritating my stoma with tasks I performed daily, I would wear one. I own a stoma guard that I like. It’s small and stays put when I move. So that’s not a problem at all.  But when I’m just going about my regular ol’ life, I’m not going to wear a guard. Very few people brace themselves and stay constantly on guard for every day bodily injury/catastrophe. And I’m not one of them. It’s just not how I function.

Try to hurt me now.  I dare ya!
Try to hurt me now. I dare ya!

And so I do the next best thing.

No banisters harmed in this water noodling. I like that it’s easy to remove as well. And no, it’s not exactly pretty. But it is better than a hospital stay if I’m not so lucky next time.

Turns out The Husband runs into this banister frequently and even injured his foot with swelling and bruised results. We both will benefit from this fix.

I figure if life kicks you in the can sometimes, or you’re an occasionally magnificent klutz, like moi, just add a few creative adjustments to make life less painful.

A Boy, A Bikini, and an Ostomy

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

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

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

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

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

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

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

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

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

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

Be yourself!

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

Mental Tricks!

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

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

Once he understands thatNobody Cares

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

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

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

 

Dismiss the Jerks!

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

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

Baby Steps!

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

see nobody cares-bikini

 

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

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

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

Be well my friends.

Because I Love Connecting With You

20140511 085bJust putting this out there:
I’ve had a bunch of new friend requests to my personal Facebook page lately and I thank you for that. However, I really need for my personal page to be just that. Personal. For my friends and family that I know in person and the few within the IBD community that I have made a connection with over time.
So if you want to stay connected, ask me questions, or generally follow what I’m up to, please like my Crohnie Bologna IBD Facebook page and I will be happy to visit with you there.  I’m also on Twitter.  Or you can go to the Contact tab above and ask your questions that way.
Thank you,
Christy
For those who already like and participate in my Crohnie Bologna IBD Facebook page, Thank you very much my Darling Sweet Bolognas.

#GetYourBellyOut

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

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

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

And then this happened:

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

 

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

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

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


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

 

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

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

Here’s a link to that Huffington Post article

There were more news outlets as well….

Wallstreeter

Women’s Rights News

Neatorama

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

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.