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Activities involving the Crohn’s or Ostomy community.

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.

IBDFamilyPicDC
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!

IBD Social Circle Summit Day 1

Today started early with a trip to the airport and kisses good bye to my husband and wee people. Five hours later I arrived in Washington D.C. for the IBD Social Circle Summit put on by Janssen Biotech. My sweetheart driver Muhammad, who kept calling me Ma’am, was delightful to chat with. D. C. traffic was certainly exciting. I was immensely grateful that he was driving, a dazzling conversationalist and was thoughtful in pointing out historical landmarks in our nation’s capital along the way.

At the hotel I was greeted right away by Stephanie of Tonic Life Communications who coordinated everything so seamlessly in advance and anticipated every question I needed to make my first trip to the East Coast a smooth one. This was a blessing and much appreciated as one of my not-so-super powers is getting hopelessly lost. And because I’ve never been farther East than a layover in Denver on the way to Houston, I needed all the help I could get!  So that on its own was a great big bucket of awesome!

Next I was off to my room to freshen up with plans to discover something to eat. While there I heard bagpipe music from the street below. Food can wait; I’m off to check that out! Turns out the IBD Summit coincides with the annual pipes and drums memorial for police officers who have fallen the previous year. It was a lovely tribute that felt more like a celebration. The ground shook like thunder and the air vibrated with the magic of bagpipes and drums. You could physically feel the music move through you. I am so glad I went. People were visiting with each other, perfect strangers striking up conversation. It felt like a festival. I heard from historical tourists, someone came from Ohio to visit family, another in town for business. Of course, I shared that I was here for the summit and shared what IBD was. One person knew what I was talking about and the rest were caught up to speed. Lots of fun with friendly people who were game for taking part of their day to visit and share a parade with each other.

Parade1 Parade2 Parade3

Lovely.

Tomorrow I get to meet some of the IBD bloggers I follow and look up to in person. These intelligent, funny, creative people that engage and educate. IBD Family. WOW!

Now don’t forget, tomorrow is the IBD Social Circle web chat “Preparing for Procedures and Surgery”.  So please sign up and participate if you can.  Don’t miss out.

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What a perfect way to start this kick off to Digestive Disease Week. I look forward to tomorrow when the official IBD Social Circle Summit begins, and can’t wait to share with you.

Until then.

Be well my Sweet Bolognas

*Janssen paid for my travel expenses for the Summit.  All thoughts and opinions expressed here are my own.*

Digestive Disease Week 2015

So I’ve got exciting news.  Thanks to Sara of Inflamed and Untamed for suggesting me, I am attending the IBD Social Circle Summit as part of Digestive Disease Week!

It’s like being handed a golden ticket to Willy Wonka’s Chocolate Factory.

Heck Yes!

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The IBD Social Circle Summit has been put on by Janssen Biotech.  It’s a way for pharmaceutical, medical and patient advocates to get together to focus efforts towards awareness and education.  These are the brains and souls that dedicate themselves to solve the ultimate IBD puzzle.  And they do it with humor, accuracy and passion.  I feel both thrilled as can be and out of my element in the most deliriously joyful way.  Most of all so honored just to be able to attend.

Last year I watched in GI Fan Girl appreciation as some of my favorite in the IBD community got together to share their knowledge.  It was hopeful as a patient to see the process in which minds of varying disciplines get together for a common goal.

I plan to document my experiences and share with you along the way.  So follow my Crohnie Bologna IBD Facebook Page and Twitter @CrohnieBologna.  You can also follow using the hashtag #DDW15.  The schedule feels like a magical whirlwind of gastro health awesomeness.  It begins with a web chat on Preparing for Procedures and Surgery and ends with the Documentary Premiere of Swimming with Courage and Crohn’s, chronicling Crohn’s patient Ryan Steven’s swim across Lake Erie in an effort to raise awareness for IBD.

To join in on the fun you can register to participate in the IBD Social Circle “Preparing for Procedures & Surgery” Web Chat.

In the spirit of full disclosure, Janssen Biotech, Inc. paid for my travel expenses for the summit. However, all thoughts and opinions expressed are my own.  Which is freeing.  I can speak honestly and not feel as though I am there to endorse any company or product.  I can just be myself which will likely include a contained amount of fan girling, geeking out at the uber smart gastros and most of all meeting people within my IBD family.

I can hardly wait.

 

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.

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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

4th Annual WEGO Health Activist Awards

What the what?!

WEGO health is at it again with their 4th Annual WEGO Health Activist Awards.

“The WEGO Health Activist Awards were created to embody the mission of WEGO Health: to empower Health Activists. We connect with so many inspiring Health Activists who raise awareness, share information, support their communities, and much more – often without recognition. The WEGO Health network is centered around Health Activists, so we knew it was up to us to tell these leaders how great they are! We wanted to celebrate those who have made a difference and thus, the Awards were born. We’ve since found that these Awards are one of the best ways to introduce new Health Activists to the online community and have community members say “thank you” to the leaders they love.”  WEGO Health

Thanks to a very thoughtful nomination, (Thank you !!) I have the privilege of participating for the second year in a row. It really is an honor just to be nominated. If you wanted to endorse me, I would be very grateful.

There are other really amazing and inspiring IBD advocates who pride themselves on giving accurate information and boosting hope in the running as well. It would be wonderful if someone from the IBD community took the 2014 win. Don’t you think?

Sara of Inflamed & Untamed – Crohn’s/Colitis Support

Frank of The Crohn’s Colitis Effect

Eric of Vegan Ostomy

Colitis Ninja

And me, Christy of Crohnie Bologna IBD

Christy of Crohnie Bologna IBD
Christy of Crohnie Bologna IBD.

How fun is this?!  My life is filled with surprises.  This happens to be a very delightful one.

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.

CCFA Take Steps San Diego~ De Anza Cove

Last year I went to my first Take Steps for Crohn’s & Colitis event. I was invited by my super cool Gastro and thought it sounded like a fun thing to try.  Why not?

Last years team pic.
Last years team pic.

In fact it was so great that I immediately began looking forward to going again.

The first thing I did was look for the sign in booth.  Before I even got to the table I met a super nice lady who saw my Ask Me shirt and we got to chatting.  She excitedly told me about her Ostomy experience and shared her enthusiasm for upcoming treatments.  How about that for an awesome welcome?!  I love my IBD community.

Anyhoo, I got signed in and went straight for the booths.  I didn’t spend enough time investigating them last year and felt like I missed out.  So off I went.

*Going for big pics so you can see all the goodness as I walk you through a photo tour of the event.*

The first booth was for a pharmaceutical company.

Ferring Pharmaceuticals.  Their motto is 'Medicine on the body's own terms'.  They work to create individualized treatments = less side effects.  My hope is in time this will be available to everyone at an affordable cost.  How cool would that be.
Ferring Pharmaceuticals.

Their motto is ‘Medicine on the body’s own terms’. They work to create individualized treatments with less side effects. My hope is in time this will be available to everyone at an affordable cost. How cool would that be?  That’s their goal as well.  I can’t wait to see it.

The next booth was MotherToBaby.  They offer support for women on IBD controlling medications who are looking towards pregnancy and breast feeding.  There are legitimate concerns about safety for mother and child when taking meds.  MotherToBaby helps answer those important questions.

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Eight years ago when I was breastfeeding this information wasn’t available. Women today have the tools to make educated decisions. I like that.
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MotherToBaby card with more information.

 

Then there was the MPA Event Graphics booth with the bright sign that drew me in.

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MPA Event Graphics creates beautiful signage.  And they had the best team shirts ever!  So if you need a stunning visual and a company that understands IBDers, this is where you want to go first.

 

Next there was Coastal Gastroenterology, a local Gastro clinic with a super joyful group of people.

20140519 032
Coastal Gastroenterology is a local gastro clinic.  Nice to see so many options out there for people to receive care.

 

There were larger medical groups as well.  UC San Diego has an IBD Center with a focus on patient education and empowerment.

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UC San Diego is a local teaching hospital. They have a large Gastro center where they offer help for every aspect of care.

 

There were some drug reps.

This one is for CIMZIA.  They have a nifty delivery system, after initial dosing it can be done by the IBDer in their own home.  There’s help available for those who cannot inject themselves.  I was most impressed by the pro human side of it.  Trying to really make it as easy and inobtrusive in a persons life as possible, while still providing a high level of care.  The rep was very good.

20140519 040

 

This booth was for REMICADE but the gentleman never really pushed or pressed that Remicade is the very best drug. (Some drug companies do that silly stuff ~ can you believe it?!)  He encouraged a conversation to happen between the IBDer and their gastro.  (Which I respect)  What he did highlight was the cost assistance program they offer.  So of course I grabbed a packet to show you, my Sweethearts.  He also stressed the fact that every costly med out there has an affordability program.  The IBDer just needs to know to ask.

Now you know.

20140519 037
Front side showing three options available.
20140519 039
Back side giving contact information.

Affordability Rocks!

 

Loved talking to the researchers.  So passionate, intelligent and personable.  Join research or take part in a study if you can.  Researchers and scientists power to understand IBD and find a cure lies in our willingness to participate.  We are the key to helping our own future.

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Interested in participating in research studies? This is a group that does just that.

 

Take Steps CCFA SWAG.  Woo Hoo!  Totally filling this bag with a snack, sunscreen and a towel then heading to my favorite beach.

20140519 042

 

Then came time for the fund raising announcements and listening to the stories of some pretty remarkable IBDers.

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This years announcer Mike did a great job.  Can you see me in the front row in my Great Bowel Movement ‘Ask Me’ t-shirt?  I had the best view. 😉

Mikes presentation on stage was positive, informative and kept the ball rolling towards the true purpose of the event.  The fearless announcer was both entertaining and endearing as he highlighted the efforts of those in the community.  A job well done.

 

After the stage presentation it was time for the walk.  This is where I got to visit with all the people. My very favorite part!  Everyone I spoke to was an example of inspiration, strength, courage and love.  I love my IBD community!

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This sweet mother, daughter duo wearing their Crohn’s fighting shirts made by MPA Event Graphics. Such positive, uplifting and hopeful women in love with their family.

More visiting…

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Chatting with the photographer. He was at last years event and is super nice.

 

Before you knew it the event was wrapping up.

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All good things that start must come to and end.

Thank you CCFA for the Take Steps experience.  My family and I look forward to participating next year.

Happy Earth Day ~Ostomy Wishes.

Earth Day art with my little person.  Crayons and Coffee with my young artist is a great way to start the day.
Earth Day art with my little person. Crayons and Coffee with my young artist is a great way to start the day.

Here it is, Earth Day and I spent the morning sipping coffee and coloring with my preschooler.  We talked about bugs and dirt, oceans and the critters that live in them.  A fabulous way to spend the morning.  Having children, I get to do all the things I loved as a kid (and all the things I wanted to do as well) and share it with them.

As my lil guy began to really concentrate on his picture, pressing hard to get the most wax from his crayon onto the page, I settled into the zen of my own art work.  I thought about all the ways our family goes out of its way to conserve and do its part to use less, own less and live more responsibly.

As an Ostomate and someone who frequently  goes to the doctor, I know that aspect of my life produces a lot of waste.  Every time I change my Ostomy there is a residual bundle of non degradable plastics that goes into the nearest landfill.  As a young person I have years of this brand of predictable consumption and waste ahead of me.

So if Earth Day were like a birthday where I could blow out a candle and make a wish about something I can change in my life, it would be to encourage the thinkers to come up with a way to make Ostomy gear more eco friendly, while keeping the durability and reliability Ostomates require at an affordable price that won’t send both insurance companies and consumers pocket books running for the hills.  *Well if I was going to wish, I’d better make it a good one.*

Happy Earth Day my Sweet Bolognas.

The Great Bowel Movements Pass It On initiative~ Sara Ringer

Sara Ringer the brains and heart behind the Blog Inflamed and Untamed.
Sara Ringer the brains and heart behind the Blog Inflamed and Untamed.

I am part of The Great Bowel Movements Pass It On initiative. This quarter ten bloggers have been chosen. The three bloggers with the most votes by June 30th wins. The prize is a wish granted towards tools to make our blogging lives better. Enriching the way we continue to give back to the community that we love so much.

You see this girl and probably know her. She is Sara Ringer, the brains and heart behind Inflamed and Untamed. Sara is a Blogger, Youtube sensation, Camp Oasis Counselor, IBD Round table contributor, Inflamed and Untamed Facebook page owner and more. Advocating and encouraging is her full time job. And her passion. Sara is smart and true and does her very best to put out facts and dispel confusion in disease processes. Sick in the hospital and just getting back on her feet – she blogs. Feeling well and clogging – she blogs. Sharing about weight loss, size fluctuations, and even death plans in a humorous yet truthful way is what she does best. So she blogs it and gives that experience to nurture her community. It’s all sort of out there for everyone to see. And we need that. It is validating, reassuring and rings true. We are not alone because Sara shares. And that’s a very good thing.

Vote For Sara.

She is the blonde with the pony tail and dark sweater on.

I can’t wait to see her wish come true.

https://www.facebook.com/media/set/?set=a.755107027856189.1073741834.162754717091426

Thank you my Sweet Bolognas 

The Great Bowel Movement Pass It On Initiative Nominee!

Being Wonder Woman for a Bowel Cancer Awareness fun run.
Being Wonder Woman for a Bowel Cancer Awareness fun run.

Guess what my Sweet Bolognas! I am part of The Great Bowel Movements Pass It On initiative. This quarter ten bloggers have been chosen. The three bloggers with the most votes by June 30th wins. With your help, I can be one of them. The magical thing about this is the winners are granted a WISH. Something to help us continue to do what we are most passionate about, advocating and inspiring through sharing on our blogs.
So, would you please vote for me? I’m the one in the Wonder Woman costume. (I don’t dress this fancy every day. Just for bowel awareness fun runs.)
To vote head over to The Great Bowel Movement Facebook album (link provided) and ‘Like’ my picture. I would love to make it to the top three.

https://www.facebook.com/media/set/?set=a.755107027856189.1073741834.162754717091426

While you are at The Great Bowel Movements page, why not check out their store and perhaps buy a hoodie or t-shirt? It’s the profits from these sales that make this Pass It On initiative possible.

‘Like’ my picture and Vote me to be your IBD Blogging Wonder Woman!

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.

 

UNDY 5000 Her Perspective

CrohnieBolognaIBD 2014 Team Sign
Walking Cancer Out the Door!


Gastroenterologists aren’t just great for meds and blood tests, they can also be a resource for activities in your local community.  I am quite fortunate in that my Gastro Professional is passionate in regards to his patients and frequently participates in fun runs, cycling and other events supporting various gastro causes.  How fun is he?!!

That’s how I found out about the UNDY 5000.  What?  Yes. As in  Under. Pants.  A 5K done in your underpants and or costumes for the purpose of raising awareness and funds to cure cancer.  Well of course I was intrigued.  As you may remember last year I went to my first awareness/cure walk.  It was the Take Steps with the CCFA which was AMAZING and I plan to go again!  If I could go to the UNDY 5000 I would. 

After checking with the calendar and husbands willingness to attend, (He was leaving for a business trip the day after UNDY) I began to prepare.  As we had to leave the house at 6:30 AM to get there on time I needed to make this as easy as possible for all of us.  There were costumes to be made and laid out the night before, back up outfits in case of rain, easy to grab breakfast, easy to carry safe snacks for my wee ones, water, and of course signing up with the Awesomest team name ever!  By the end of the week team CrohnieBolognaIBD was ready to go!

The morning of the event included tucking sleepy kids into costumes, one costume change of heart, a simple yet filling breakfast, little people strapped into safety seats, coffee in travel mugs, a last minute camera check and off we went.
 

Nice morning, pleasant walk, great view.
Walking with my little Scientist and her pet monkey.

As you can see from the crowd behind us, there were loads of people.
At this point in the walk my Minion traded his monkey for the sign.

When we arrived the lot was overwhelmed and we were ushered to overflow parking.  Already there were loads of people.  The day was warming up and there was excitement in the air.  My kids spotted the inflatable bowel and were eager to check it out.  A quick parking lot review of costumes and we were on our way to sign in and get racing bibs for a Scientist and her pet monkey, a Minion and his pet monkey, my personal Cabana Boy and me, Wonder Woman.

There were Pirates, Teenage Mutant Ninja Turtles, a tribe of Minions, lots of tutus, dogs in underpants, Superheroes and even downright racy people who took the whole ‘underpants in public’ thing quite seriously. (Bless their sweet lil hearts.)

There were team prizes for funds raised presented by poised announcers encouraging the crowd while also giving facts and keeping the entire event on schedule.  There were also booths with various vendors, support groups and information. 

Husband aka Cabana Boy ended up being more of a
pack mule with all the UNDY swag and sock monkeys.
Still smiling and in good spirits.
(Thank God for husbands with a sense of humor!)

But most of all were the people.  Every one touched in some way by bowel disease.  They were clustered in teams but soon began to share with each other.  They told stories of strength, courage, family, determination, loss, and survival.  Most were funny.  Some somber.  Loved ones refusing to stop fighting cancer on behalf of those currently battling, those in remission and those gone.  I thought of my friend who I can happily say is in remission from cancer.  I thought of my Bolognas, some of whom have been touched by cancer, but most certainly have been drawn together as a community by bowel disease.  I was immensely glad I went.  I was happy to have brought my children.  To expose them to this form of doing well for the world is my parenting win for the weekend.  I was proud of my husband (who was squeamish about dressing up, especially in underpants) who really embraced the experience. 

The 5K was quite pleasant.  As the day warmed my Dearest became somewhat of a pack mule as children decided parts of their costumes were too hot or heavy to carry.  Husband took it in good stride and gallantly suggested it was his workout for the day.  *Collective Awww!*   

Restrooms along the way, pleasant weather, nice breeze and race volunteers on the path to cheer and give high fives to the kids made the experience fun for everyone.  We took it easy to let our little people scamper after ducks and explore the shaded grassy areas.  An ideal family outing for sure.

Here I am as Crohn’s Vanna. 
I love it as a teaching tool and a conversation starter.
Lots of education happening here.


We left feeling uplifted.  UNDY 5000 was easy, fun and invigorating.  I would be happy to go next year.  I look forward to participating in more walks to support causes in line with my passions.

These are my little people proudly standing by the ‘Normal Colon Tissue’.
Let’s go on more walks to support research and keep them that way.