Category

Outreach

Crohn’s and IBD can both be an isolating disease.  I’m here to shed some light on some social stigmas, give you a perspective into my journey, and hopefully be an advocate and resource for those that need help.

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.

Gowning1
^^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.

 

Gowning2
^^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.

Gowning3
^^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.

Remember Who You Are


Ostomy Beautiful
Please remember who you are:
You are lovely just the way you are. You have earned the right to be okay in your own skin. You have earned the right not to hide. So Don’t. Your life and your story are valuable.

 

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?

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

Interview With An Eight Year Old

Once a year I do an interview with my daughter about Ostomy, Crohn’s Disease and how that affects her.  It’s a great bench marker for where she is in understanding and always leads to great conversations after the interview.  Plus she likes to contribute to my Crohnie Bologna page by giving an ‘expert kid perspective’ for anyone out there with kids, thinking you may want kids or are around kids and wonder what they’re thinking.

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A Bologna mama and her sweet pea.

1. Who are you?
I am Grace. I like to read for fun. Right now it’s Harry Potter and Little House on the Prairie. I am eight years old in the third grade. My favorite color is green and I am awesome at hula hoop.

2. Do you remember mom before Ostomy?
Yes. More of a general idea of mom in the bathroom a lot, and sick. You were very, very sick. You tried hard, but we knew. You just had no energy. You even woke up in the morning tired. You looked very tired.

3. How did mom get better?
You went to the hospital. And that’s when you got it. Your Ostomy that Dr. D gave you. After two to three days you came back home but had to take it real easy. I was able to visit you in the hospital. That’s when I really understood that it [the Ostomy] was going to be a forever thing.

4. What is an Ostomy?
There’s a little pink opening on your side and you go to the bathroom through it. And you can’t control when that happens. You wear a bag over it that you empty in the toilet – like everyone else goes to the bathroom. Every day you change your tummy bag. Which kinda looks like a heart. There are different sizes and they are fun to decorate.

5. What do you think about Ostomies?
I think it’s a life saver. Makes a big change in your life. You are healthier. It saves you completely. If it weren’t for your Ostomy, I wouldn’t have a mom.

5b. What do you think of mom on the beach in a bikini?
Absolutely normal. You shouldn’t be ashamed of something that saved your life. Perfectly okay. And they’re cute!

5c. What if your friends see that mom has an Ostomy?
I’m not ashamed of that. It’s part of you. And I’ve even done oral reports about it [Crohn’s Disease] for my class. Plus then my friends will know about Crohn’s Disease and maybe they’ll be a doctor or a person who has Crohn’s Disease. Then they could help others find a cure, or if they have it, they won’t feel alone.

6. Is life better for you now?
Yes. I’m able to do regular kid adventures with my whole family. It’s like you’re not sick at all pretty much every day.

7. Why did mom get an Ostomy?
Because of a rotten disease called Crohn’s Disease. That’s when your, like from your mouth to bum doesn’t work properly and surgery took the part away that makes you the most sickest. And then you have a tummy bag. It’s harsh to think your mom is so sick she needs parts cut out. I mean, those are supposed to be working. But Crohn’s Disease gets in the way and says NO! It’s sad and good at the same time. Sad that Crohn’s Disease is in mom. But good that surgery can take the part out that’s hurting mom. There’s a lot to it. Blame it on Crohn’s Disease. When are we going to find a cure anyway?!

8. Does mom do anything to stay healthy?
You have to take medicine every day. Eat food carefully, but not always the kind you want. Like apples, nuts and popcorn. You are thoughtful about it. You change your Ostomy quite often so you don’t get raw skin, which helps you stay healthy. You get your blood tested and see your special doctor that rides the bikes. You pretty much stay active and play. Oh, and water. You drink water constantly.

9. Do you think it was a good idea for mom to get an Ostomy?
Heck Yes! Because if you didn’t you would have a really hard life until you passed away which would be sad. Now you are just a normal mom. I don’t even think about it unless were at the beach or I come in when you’re changing your tummy bag. Then it’s just interesting.

10. Do you have advice for anyone else who may need an Ostomy?
*If your doctor says you need an Ostomy, it will be okay. My mom is more energetic and healthy. Now she feels better. Nobody wants to be deathly sick like she was.
*There are two types of beauty. Kind, smart, happy, nice, energetic and likes to play and those that look good in clothes with nice hair. You can be both with a tummy bag.
*Your family will want to learn about it and the disease that made you need a tummy bag. Then once they know, they will go back to thinking of you as their super cool mom or friend.
*Being healthy is worth being brave.

11. Anything else you would like to add?
*I am worried when we get sick that you’ll get sick again and end up in the hospital. But if you did we would visit you.
*I love my mom and she is beautiful just the way she is. Your kids will still love you too.
*Maybe your kids will grow up and find the cure? I know that’s what I’m aiming for….Or designing bridges like Dad. I think either of those would be good.

GO OSTOMATES!
I’m on your team!

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

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.

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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.

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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.

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Front side showing three options available.
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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.

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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.

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 

Taxes and Crohn’s Disease

Taxes, Crohn’s Disease and Medical Expenses.



The one time a year we sit down and discover exactly how much of our income we spent on medical.

This year 21.7% (including pre tax dollars) went to paying insurance premiums and medical bills. 11.7% of this was post tax. Aka c
ame directly out of our paycheck.

I don’t go around feeling disabled. Pretty much never. However, this cost is very disabling to our family.

And stressful.  Here’s a link to a previous post where I go over money stress as a mom with Crohn’s Disease.

Here’s to ZERO extracurricular medical activity in 2014!

Now for a list of things I am grateful for about all this: (Because that’s how I roll.)
~Taxes is a time to be grateful that my husband has a job he loves.
~Grateful for my awesome filing and record keeping skills.
~Grateful that I have a husband willing to do the taxes while I make yummy stuff in the kitchen.
~Sense of accomplishment and relief when it’s all done.

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.

UNDY 5000 ~The Husbands Perspective

It doesn’t matter what condition your guts are in, when your husband is off on business, the work load doubles.  I have one of those helpful husbands who does dishes and reads bed time stories to the children so I can pack tomorrows school lunches.  He also preps the coffee pot and starts it EVERY MORNING to ensure I get my precious hot fuel. *Which I find extraordinarily romantic.* When he goes away on business a mountain of very important, helpful things go with him.

In addition to being helpful, dear husband lovingly tolerates my outgoing nature which sometimes includes going to festivals and events that frequently require costumes and chatting with strangers.  With humor, deep breathing and an easy going calm that I can never achieve, he participates in all the ‘fun’ things I think families should do. This past weekend our family went to the UNDY 5000.  My post is delayed by double duty until husband returns.  However, my sweet darling likes to type while on the plane.   And so, I will share the UNDY 5000 from the husbands perspective.

Hello Crohnie Bologna’s!
I seem to find myself on planes more and more often.  But today sure has taken the cake.  My plane from San Diego was delayed, so I missed my connector flight to Oakland in LAX.  But, after an unexpected 4 hours of layover in LAX… they BUMPED ME TO FIRST CLASS!  I feel all special and pampered.  Did you know they have all sorts of different kinds of snacks in first class?  I didn’t.  Or that they ‘take your order’ instead of driving that elbow-banging food cart by you?  Or that you get blankets and pillows on top of the enormous seat?  This is a very eye-opening experience.

Sadly, me flying somewhere means I have probably hijacked, no pun intended, Christy’s time as she will be working overtime managing the kids, the house, and the bills on her own while I am out of town.  So, instead of mulling over the loss of a few blog posts, I decided to spend my 45 minute flight into Oakland telling you briefly about my weekend.

We went to an event on Saturday called the UNDY 5000.  It is a 5k walk to support research for Colon Cancer.  So I’ll regale you with “The Husband’s Perspective.”

Sporting UNDY 5000 shorts and Crohnie Bologna IBD team sign.
First off, and this is completely unrelated to the walk itself, but hell…they should give out prizes to parents for getting their kids out of bed at the butt crack of dawn, load them in a car, and drive their persnickety keisters to an event.  Christy did great in that everything was organized and ready for the kids.  So we only had to dress‘em, feed‘em, and load‘em in the car!  Still thought, it was a challenge getting there on time even with all of Christy’s prep work.

Costume check. 
Ready to GO!

Holy crap! My coffee just came in an honest-to-goodness ceramic coffee mug!  No droll paper cups for the movers and shakers in first class I guess….

The event was well organized and had a massive turnout.  I believe they ended up raising over $100,000.  The organizers kept things on pace, and the race started out well.  I’m a bit shy of dressing up in costumes in public, but my wife went as Wonder Woman.  My daughter went as a Scientist and her pet monkey.  And my son went as a Minion….. with his pet monkey.  I did end up getting ‘dressed up’, as I became something of a pack mule.  As we gathered paraphernalia, such as boxer shorts, posters, bead necklaces, or stuff the kids didn’t want to carry anymore, I would incorporate it into my “costume”.  Suddenly, I’m walking around with an extra pair of boxers on the outside of my shorts, another pair of boxers with the event’s name prominently fanned out from my belt, a monkey on my back, necklaces on my mostly-unbuttoned-shirt, and finally another monkey carrying my race number.  I didn’t ‘set out’ as someone who was dressed up, but I sure ended up that way.

Overall the whole walk was fun.  We weren’t in a race, and kept the pace slow.  I think it was treated more of a fun family walk where we would interact with the people around us, watch the kids chase ducks, and generally ‘stroll’ to the finish line.  The race organizers had people in yellow shirts placed intermittently along the route.  They would cheer, and whoop, and holler, and generally make you feel special for participating.  Most entertainingly, the kids would run up to these yellow-shirted cheering people and high-five each and every supporter.  It was super cute, to say the least.

Ducks!

We had to stop a couple times.  My daughter had a costume malfunction that set us back a good five minutes, and my wife and daughter had to use the bathroom around the 4k mark.  But overall, we ended the morning well.  Everyone had fun, got a good walk in, met some fantastic people, and enjoyed a beautiful San Diego Saturday morning.

I suppose this little article doesn’t have a ton to do with IBD education.  Or perhaps it does.  We went out to support a cause, and generally had a ton of fun.  Was it work?  Was it painful or costly?  No.  It was a fun event that we participated in that shows our support for the community as a whole.  And, aside from packing the kids in the car at 6:30AM, it was very easy.  

Community of people who came to support, share and educate.  

The plane is starting to descend into Oakland.  So I better wrap this up and enjoy my last few minutes of ‘first class’ travel.  (It isn’t terribly likely that I’ll get this kind of a pampered treatment on an airplane again anytime soon)
 
We had a very fun morning.  It isn’t hard to support a cause.  Hell, as I said, the 5k ‘run’ was easy and more of a ‘family walk’ then an arduous venture.  So if you hear of something.  Some event that is occurring near you like a Take Steps or UNDY 5000, or whatever, and you think it’ll be a pain to schedule it in, please reconsider your direction.  Doing these things isn’t something I envisioned a dozen years back, and perhaps some of Christy’s passion is rubbing off on me.  Anymore I am looking forward to going to these things and supporting people and supporting the continuation of health R&D.

Hopefully Christy will add some pictures to this thing.  I’ll e-mail it to her once I find a decent internet connection.  You “Sweet Bologna’s” hang in there.  All of you are awesome and I hope you go out to have an adventure.  After all, you may be having a crappy day, one where your flight gets delayed, or your kids are struggling to get dressed in the morning, or you’re worried about missing some pointless meeting the next day….  then BAM!  A new, unique, and interesting experience may land in your lap.  And THAT experience, be it sitting in a surprise first class seat, or being covered in stuffed monkeys with your underwear on the outside of your cargo shorts, is well worth the risk you take by sticking in there, keeping calm, and having a bit of an adventure.

UNDY 5000

My family and I are participating in the UNDY 5000! 

The first inspiration is my friend Dan who kicked Cancers a$$ and continues to live an awesome, joyful life every day. Dan Rocks!! 

My second inspiration is my children. I want them to participate in meaningful events like this where a community comes together to make a positive difference. 

The third inspiration is my Gastroenterologist. Without his invitation I would have never known about the UNDY 5000.

Yay! 

Now to get on board with costumes and festive this thing up!

If you would like to participate with us, join my team CrohnieBolognaIBD, support my team with donations or lurk my page to check on my progress. Please feel free 

IBD AT SEVENTEEN

I haven’t shared any pictures of myself when I was young, mostly because I don’t have very many. Recently a classmate sent this my way. You guessed it.  This super pale, ultra thin girl was seventeen year old me back in 1994 at my senior prom.  Not one person will be surprised to hear I did not have a date.  I had been undeniably sick since middle school and had moved in with my grandparents a couple years earlier.  Recently diagnosed with Ulcerative Colitis, it felt like I spent more time in our local hospitals, clinic, and recuperating at home than I did in high school.

Young me recently had a test showing the presence of precancerous cells. My colon was firm and not responding to treatment. My stool was a warm mix of blood with clots that smelled like death. Think the aroma of maggot infested chicken carcass and sewage left in the garbage can on a hot summer day – but that toxic sludge was coming from inside me. A painful, cramping, stressful way for a teen girl to live while trying to appear normal and live under the radar.  I was in constant fear of crapping my pants at school, a very real thing I experienced on more than one occasion- even during a slow dance at homecoming.  Perfectly Mortifying!  Needless to say I had no boyfriends in high school or much of a social life.

It was hard to be invisible when my hair smelled of the sulfa medication I was taking in efforts to try to feel better.  The really huge perm was a failed attempt to be free of the odor of hell infused sulfur suffocation wafting from my locks.  Those huge glasses?  It’s what I could afford, entirely NOT the trend, uncomfortable and slid down my nose all the time.

I went to class every day fevered and painful with rotten bowels and achy joints and muscles.  It was common to pause and sit on the stairs or lean against the lockers that I was sometimes crammed into because I was an easy target. I walked around heart poundingly, clammy palms, dizzy with a combo of blood loss, malnutrition and low blood sugar.  People put stuff in my hair, ran their fingers up and down the visible ribs in my back to, ‘play me like a xylophone’, threw rocks and called me AIDS patient and Cancer girl.  I missed school for regular appointments to receive blood transfusions and z -track iron into my butt which added to the gossip.

In this particular picture I was recently weaned off steroids and pretending to be healthy.  I was days away from going into a flare that would end in the removal of my large intestine and part of my rectum.  Ten days later I was an Ostomate.  My life as a J-pouch girl was right around the corner.

Ah, high school.

And youth.

I quickly returned to school comforted that almost no classmates knew about my surgery.  High school was a feeding ground for the strong and popular.  People like me were consumed daily as tasty treats.


Isn’t it funny the way you can look at a picture and remember everything about that time and place in your life?  As if the picture is documenting a moment complete with a touch of soul in it. Transporting in a way, but with the perspective of who you are now against who you were and what you experienced back then. Magic.

Back then Asacol was a trial drug administered in an enema form.  I also got to try Asacol in pill form when it first came out. 

I was young enough to hope my colon was sitting in a jar somewhere helping scientists figure out a cure for IBD.  Which was strangely comforting.  To be honest, I still like to think of my intermittently removed parts as another clue towards IBDs destruction.  (Apparently I’ve had it in for IBD for a while now.)  

As much as high school was torture, it also had its sweet spots. Twenty six days after surgery I went to the senior outing at a water splash park and took pride in the fact that no one could tell I was an Ostomate.   I had a few good friends.  I had a principal and school counselor that went to bat for me once they knew what was up.  Most teachers ignored me (which was better than disdain, so I’ll take it as a win.)  There was one special person, St. Elmo that saved me from giving up.  Twenty years later I still hug him whenever I see him.  There was one football player whose locker was right next to mine. He saw me being shoved from student to student, picked me up – books and all, and carried me to my locker so I could get there in one piece.  There was the school mascot with a tricky life of his own who was always kind and even sat with me once while I rested on the stairs.  Small moments like these made such a difference back then and still do today. 

I joined in the flag squad, went to school dances, attended a few football games and tried to be normal.  I loved honors english, working in the library instead of PE, and volunteering to help the football team by cleaning the locker room, equipment and anything else the coach needed. 

I graduated on time with an appallingly low GPA which was a miracle made up of a dozen smaller miracles.  I proudly walked across the stage to get my diploma with an Ostomy under my blue silk dress. 

These are some of the experiences that shaped who I am today.  I learned a lot about human nature -both ugly and beautiful.  I know for a fact that there are several kinds of strength.  I grew a healthy dislike of crap of all sorts – and those who deal it out.  I know what it’s like to be stripped down to the nothing and to start over again. I understand the importance of small joys.   I have experienced how with

one small action at a time you can create happiness for yourself.  Gratefulness is a living thing that spreads and grows when nurtured.  There is value in try, try, try.  And most of all, I know the power of hope.   

I consider myself lucky to have lived such an extraordinary life so far. 

I would tell that seventeen year old me to keep going.  Things are about to get a whole lot better.

TO REMEMBER A FIGHTER

There is a lady who I have never met but identify with.  Her name is Tiffany Collins.  She was a wife and mother of two children, a boy and girl.  She was a daughter, sister, granddaughter, daughter in law and friend.  She was young -too young.  She had so much ahead of her. 
She had IBD.
She was a fighter.

IBD took her anyway.

January sixteenth 2014 Tiffany would have turned thirty two years old.

And this scares the shit out of me.

On paper her life parallels mine in many ways.  I can’t help but to identify with her.  I have two young children, a boy and girl.  I am a wife, daughter, sister, granddaughter and friend.  I am young- too young.  And just as she did, I have a lot of living ahead of me as well.
 
I know what it is like to be so sick that I wonder if I am going to win against IBD this time.  I have seen the fear in my husbands eyes and I know my illness has hurt him.  I have felt the guilt and anguish at being so stripped down by Crohn’s Disease that my children can see through my attempts to appear well.  The look in their eyes as they walk hand in hand with my husband,  little heads turned my way while they leave the hospital, promising to visit tomorrow, needing me to promise to be there waiting for them.  Hope in the desert that Crohn’s Disease designs.  

I imagine all that for her and more.   

I think about Tiffany.  Her husband.  Her children.  It feels unjust to be stripped away like that.  Devastation.

I can’t help but to think about my family.  I could have been gone several times over.  I know it.  It could easily be my husband alone with two children, trying to navigate a world without its center.     

Tiffany Collins lived and died my worst nightmare.  The worst fear of any IBDer with a family, really.

All because of Inflammatory Bowel Disease.

Tiffany believed in the purple awareness ribbon.  It was her wish to see it recognized as much as other awareness ribbons.  If her dream comes true anyone seeing purple will automatically think of Ulcerative Colitis and Crohn’s disease. 

To honor Tiffany and her family I turned my page purple for the weekend and decided to extend it a while longer.  Other IBDers have done the same. 

It is a reminder to live life while you have it.  Feel your gratefulness and show it.  It makes every kiss sweeter, hug tighter, friend dearer and love deeper. 


Oregon Trip~ Her Perspective

Yay!  A WEDDING!!  I LOVE weddings.  This one is even better because after 66 years of bachelorhood, Bens adoptive Dad found the perfect lady to spend the rest of his life with.  Together they are great parents to us and adoring grandparents for our children.  Perfection.  Time to Celebrate! 

We have an airplane to catch and week of fun to prepare for.  As the wife and mom, my job is to plan, prepare and pack.

The first thing we did was create an itinerary for every day (including packing day and the day we arrive back home) to ensure everything gets done and no time is wasted.  That involves contacting friends and family well in advance to let them know you are coming to match times available in order to maximize visits and include everyone. 

I planned outfits for the family according to the day’s activities, placed each outfit in a gallon zip bag and labeled each one.  This made packing simple and helped guard against the dreaded over packing that can happen when traveling with kiddos.  Each day just look for the zip bag with the corresponding label and voila! Success. 

I had a dress to find.  I wanted to compliment Ben’s groomsman suit and avoid clashing with the wedding colors.  I was down to the wire on finding this dress and getting nervous.  As time passed, desperation began to set in.   I mentally reprimanded myself for not having thought to purchase a dress with matching shoes, under things, and shimmer all at once before now.  From now on (watch out wallet) when I find a perfect gown, I’m getting accessories at the same time!  My goal was to look put together, age appropriate, and lovely.  I accomplished this with a plum colored banded dress with lace high capped sleeves that flattered my form, was easy to move in, and disguised my appliance.  The end result was quite fetching.  Victory!

When it came to packing for my Ostomy needs, it required examining what I actually use and then doubling that in case of emergency, separated bags, or digestive hurricane.  I brought a small gear kit in my back pack that was kept with me all the time.  The rest traveled in our larger carry on that was stored in the overhead compartment.   None of my Ostomy supplies went into checked baggage.  For me, it wasn’t worth the risk. 

Items in the small kit were:
~Permanent marker
~4 paper towels folded up
~One pair of long handled, short blade Ostomy scissors
~One 2oz tube of wafer paste
~One 1oz bottle of stoma powder
~One Stomaplex Equalizer (But I used to just have an extra TP tube)
~One roll of disposal bags (the kind you use for doggy poo pick up ~or~  in the baby isle for wrapping up poo diapers)
~ Two wafers.  One pre cut and one not
~Two Ostomy bags
~Tiny baggie of water based wet wipes
~1oz bottle of Purell

In the back pack to compliment my Ostomy cache I kept extra zip bags for emergency emptying in park or other ‘no restroom’ situations. (More about those later in a different post.)  These came in handy and are a staple for my purse or backpack all the time.  Their uses are limitless.

In my back pack I also kept daily medications and digestive aids such as Gas-X and an anti diarrheal.  Rich foods, going out all the time, hectic schedule, and lack of sleep can lead to digestive mutiny.  It’s always best to be prepared.  Both Ben and I were super grateful that we were. 

So, itinerary is done, bags are packed, car seats ready to be loaded.  We arrive at the airport early and in style thanks to our friend Marco.  Thank you Marco J

On to the TSA!  Transportation Security Administration to be exact.  And that SECURITY part is taken very seriously.  As an Ostomate I figured the body scanner would likely see my gear.  I dressed in flip flops, jeans, and a light top.  Comfort and easy shoe removal was on my mind.  I also wanted to be able to have my bag easily accessible in case there was an issue.  I had previously seen the body scanner on the news, so I had an idea of how it worked.  It appears to be able to detect anything under clothing.  So I figured this would be a quick sail through.  The scanner would see that I am an Ostomate, backwards hand check to confirm that yes, indeed I am an Ostomate and not the next plane bomber, and I would be on my way.  In my mind that is how it was going to happen at least. 

In Reality Land I went through the scanner, hands above my head.  There was a,”Mam, step forward please.” As the woman manning the scanner calls another person to take her place.  I tell the TSA employee that I am an Ostomate.  Then begins the back and forth of
TSA: ‘What?’
CB: ’I am an Ostomate.’
TSA: ‘What?’
CB: ‘I have an Ostomy.’
TSA: ‘What is that?’
CB: ‘It is a bag on my abdomen for collecting stool.  I am an Ileostomate.’  I lift my shirt to show her for clarification.  At this point gathering that perhaps not too many Ostomates have been through this port, or perhaps Things That Can be Attached to Peoples Bodies and are A-OKAY is not yet part of TSA training curriculum.
TSA: Her eyes dart down to my bag then back up at me.  ‘Follow me please.’

 I straighten my top and follow the TSA employee as she leads me to an open area where another TSA employee waits next to what looks like an ATM machine with a tricked out treadmill attached to the side.  I glance back and see my back pack and Ostomy kit is being searched as well.  By now more TSAers have joined in and we all stand around as I explain that I am an Ostomate and exactly what that is.  I feel like I am speaking another language.  They all may as well have question marks stamped on their foreheads. I lift my shirt again and hike it up high so they get a good look.  Now they understand…somewhat.  There is mention of calling ‘medical’ to come down.  In my mind I am thinking, ‘Are you kidding me?!!  I am clearly NOT sick!’  So there I stood, inwardly proud of myself for changing gear the night before, just as someone in a car crash is grateful for clean underpants.  The one in charge of the groovy ATM/Treadmill steps forward and sweetly explains that they are going to have to do a test.   No shoes, shirt up, gear and abdomen for all to see, I was asked to run my hands over my bag, then without touching anything else, put palms out to her so an explosives test could be completed.  A wand with what looked like a round felt pad at the end was wiped over my hands in a grid fashion as to not miss a thing.  The pad was then put into a slot in the ATM/Treadmill.  Thirty seconds later a readout on the machine said ‘Low Risk’.  At that point they told me I was free to go. I thanked them and wished those TSA gals a good day and was off with my family in no time.

 
As I tell it to you, it sounds like the search took a long time.  But it didn’t. No one made me show my gear, I offered that up for clarification and to speed my way through the line.  Just think how much time and how freaked out my kids (who were standing right there and watched the whole thing) would have been if I had to go to the efforts of bustling off to a private room.  Excuse me, but I prefer we search me where everyone can see what you’re after.  And P.S., let me help you along, if I can, to show you I have nothing to hide.

For me, I see my Ostomy bag much like underpants.  We all have them, sometimes underpants show and sometimes you have to be okay with willingly showing them to make a point.  My point was to get to my destination on time.  In the end, there was a dash of education thrown in along the way.  Hopefully the Ostomates that go through TSA after me have an easier time as I am sure those TSA gals will remember what an Ostomate is. 

Anyhoo, the plane ride was pretty peaceful as Ben sat with the kids on this leg of the flight.  Taking turns with kids in cramped spaces is yet another reason why we are a super awesome, married people, parenting team! 

Then began a week of what I am calling JOYCATION!  Every hour of every day was planned out for maximum fun.  We visited friends, family; I got to love on my twin sister, and even got to meet a few newborn family members.  We attended a parade, celebrated our sixteenth wedding anniversary, went out dancing, watched a UFC match, swash buckled through pirate laser tag, bucket fun at Applebee’s, play dates for the kids, splash pads in the sun, enjoying pretty cupcakes made by pretty people, fondue night, and of course a wedding celebration that spanned two and a half days.  An exemplary toast was given by Ben to his Dad and new Mother that made grown men cry.  (It was that good you guys) We even moved to the groove in a thrilling flash mob for the newly wed bride and groom.  After, everyone danced like nobody was watching all night long, loved on each other, and celebrated.  It was a celebration of each other, of the couple, of family, and our community.  Every single living family member attended from all over the globe.  Generations came together for the single purpose of love, gratitude, welcoming, and acceptance.  The entire week was joy in motion.

The trip home began with a second jaunt through the TSA.  This time I knew what to expect.  I asked to skip the body scanner.  The request to go through the standard search, with the explanation that I am an Ileostomate and they were going to have me do the inspection anyway was met with inflexibility.

 *inward sigh*

I was ushered through the scanner to be unnecessarily zapped again.  Predictably the gentleman called a woman TSAer to come and take me aside.  I was placed in a position where I could see the screen she was looking at.  She pointed to the highlighted area and explained that this was what alerted me for further questioning.  This TSAer was treating me like I was a reasonable person, not a human red flag of danger.  I told her I was an Ostomate.  Her expression was one of understanding.  I was happy to see she knew what I was talking about.  Eureka!  YES!  In my mind I am thinking, ‘This one is going to be WAY easier.’  She leads me to a different version of the ATM/Treadmill I had encountered before. 

Off to the side I can see my Ostomy kit is being searched.  TSA guy asks Ben about my kit.  Ben confirms it is his wife’s kit.  TSA guy asks to look inside.  Ben gives permission.  TSA guy then unzipped my kit, opened it up, ran his finger inside to get a good glance, pronounces it ‘good’, and my items are clear to go.  I am buoyed again with gratefulness as this time it was a simple glance inside versus the pawing from the previous airport. 

I turn my full attention back to TSA lady.  It is just she and I versus the gaggle of people at the other airport.  I explain again that I am an Ostomate.  I lift my shirt to do the hand wipe, explosives test ATM thing again. As we wait for the machine to do its job, TSA lady comments that she knows what an Ostomy is, but then followed up about how the Ostomate she knew would let their bag fill up and get all gross before emptying and other unsavory observations.  (Ewww!) I found her attempts to connect by associating me with being unhygienic sad and had a moment of education with her.  I assured her that was NOT the norm in any way.  As the read out gives me the ‘all clear’, TSA lady compliments me by saying, I carry it well, she would never guess I was an Ostomate.  In my mind I appreciated her efforts to connect and be friendly as I thanked her and joined my family.

I was grateful to be done, that it was a quick search, that this TSAer knew what an Ostomy was, that the gentleman TSAer who searched my kit didn’t linger in what I consider private.  (Not even Ben gets into my kit). I am grateful that I was treated kindly, shown on the screen what they were going after, that it was just one TSA lady versus the zoo exhibit feeling from the previous port.  This search took even less time than the previous port, and I never lost sight of my children. 

The TSA wasn’t that bad.  They did their best in a situation they clearly did not understand.  I believe I was helpful with my forthright and positive demeanor.  They got me in and out as quickly as they could within their guidelines.    

On the plane ride home it was my turn to sit next to our kids in a cramped space.  My time was used to remind the littlest to NOT kick the seat in front of him, refereeing the sharing of our Kindle Fire (P.S. I LOVE our Kindle Fire beyond reason), managing water and healthy snacks, and ushering wee ones to exotic airplane potties.  I admired Ben leisurely typing away on his computer, fully at peace as his two companions were either sleeping or staring out the window the whole way home. 

Lucky guy. 

Lucky wife. 

Happy family. 
 
Fabulous JOYCATION!

Family Vacation ~ A Spouses Perspective.

We have been on a family vacation which I am calling JOYCATION 2013!  We participated in the wedding of a life time for my husbands father, all the while celebrating, visiting with, and enveloping ourselves in family.  We played with friends, marinaded ourselves in love and fun, and filled every part of every day (and every evening) with joy.  Hence the title JOYCATION 2013!

This will be a post from a ‘His’ and ‘Hers’ perspective.  I found Ben’s contribution enlightening.  His observations and the way he describes events is telling of the kind of man and husband he is.  Protective, thoughtful, kind, insightful.  A gentleman.

Another day, another flight.  I once again find myself on a somewhat uneventful plane ride.  This time, I am making the trek between Portland and San Diego at 9:00 at night.  I am not alone.  My two wonderful children are sitting across the aisle while my beautiful wife plays referee.  Our roles are reversed from our fight from San Diego to Portland, so I find myself with some mundane free-time, sporadically interrupted by my Daddy voice saying, “Listen to your mom!”

My two seat companions on my left are asleep.  One doesn’t speak English, and I assume he will have an awesome time at the San Diego Zoo with his college aged buddies.  The other is a nice older lady who konked out not five minutes after the plane was in the air.

So… what to talk about.  Perhaps a quick review of the difficulties I noticed my wife endured during our trip to Oregon would be an appropriate topic.  She deals with them very well, so this article may be a bit abbreviated.  Heck!  It is a relatively short flight, so brevity is a requirement!

We came out here for a wedding.  I have a somewhat unique relationship with my non-bio father.  He started out as my football coach during my sophomore year in high school, and has evolved to fill the rolls of friend, mentor, and father for me.  He was getting married for the first time, and I was to be one of two groomsmen.  We decided to stay for a week so my children could have as much time possible with old playgroup friends, extended family, and devote time to the wedding.  This necessitated a variety of wardrobe, tactical, and medicinal issues my wife had to tackle.

So, the stage is set.  Let me take you on an adventure as we fly alongside a beautiful Pacific sunset.

Packing for a wedding is fairly easy for a guy.  We wear a suit, jacket, and comfortable shoes.  My wife had a little more difficulty.  She had to find a dress that complimented her awesome figure, yet detracted from the ostomy gear.  It isn’t that it seemed difficult to purchase the ‘right dress’, but the ‘right dress’ had to match my clothes as a groomsman.  She went through several dresses, on many different shopping trips.  The sleek ones were difficult to camouflage her gear.  The billowy ones were too frumpy.  The reserved ones were, well, too dang reserved for a wife with her lithe body.  She ended up finding a nice purple number that had these descending decorations around the stomach and waist.  This gorgeous dress allowed her to move with freedom, while accentuating her natural curves, and obfuscating her gear.  Quite simply, she looked beautiful.  So if you are worried about finding ‘the right dress’ for an event, I believe it can be done very successfully.  Gear or no gear.

Another issue was the TSA.  A lot of gear goes into a trip.  And it is gear you do NOT want to put in checked baggage.  If the airline loses that gear, you will find yourself in a world of hurt.  So we worried and fretted about how the San Diego and Portland TSA would react to the assorted accessories required to perform proper gear changes.  Also, the dreaded ‘pat down’ itself is concerning from a time and personal comfort standpoint.

The last time we traveled, my boy was eighteen months old.  He was in my wife’s arms when she was told she had to be searched.  And since SHE was being searched, HE would need to be searched.  Now my boy can be a little terrorist at times, but not in any literal sense.  As I didn’t want my boy or my girl to be patted down because they were with my wife, I elected to have them both accompany me.  It was probably a vain move as they were old enough to be their own people.  But I was being my overprotective self.

Christy did indeed need to get patted down.  In San Diego, I was directed through the metal detectors because I was negotiating the direction of the children.  Christy was directed into the body scanner.  And, of course, as the supervision x-rays shot through her cells, they noticed she had something ‘odd’ under her clothing.  At this point she was taken to a room to be patted down or have her gear inspected, or something.  I will let Christy tell you about this experience, as I have no knowledge of what it felt like to have that happen.  All I know was her saying it ‘Wasn’t that bad’.

Jumping ahead in the trip, on the way to tonight’s return flight home, Christy didn’t want to go through the full-body scanner.  I BELIEVE you can elect not to go into the thing, but they rushed her into the darn thing, and I don’t believe they let her know that she COULD elect not to go through the thing.  Heck, she was going to get a pat down anyways, why not skip the additional radiation?  From a husband’s perspective, I wish I could have been next to her to assist.  I have flown a lot more than her at this point, and can provide a bit of direction in these situations.  But I was busy herding our children through the TSA hoops and troops.  Sorry Christy, I wish I could have done more.

Drink cart time!  Of the six airlines I have flown on, I have to say I like Alaska Airlines’ complimentary “Crunch Snack Mix” the best.  It must be the soy nuts or pretzel twists.  Somehow this complimentary combination complements itself very well.

So the next challenge I recognize as an issue for an ostomate, for my wife, is the need for bathroom breaks.  We were out and about, eating strange and rich foods, and we had to make sure a bathroom was within easy reach.  This is a lesson I have learned a long time ago, but for those spouses-of-ostomates out there, please, PLEASE immediately find a bathroom if your significant other says they need to use the restroom.  On trips like these, you may feel a time pressure, or stress, or some overarching obligation requiring you to hurry to your next destination.  After all, it is only a half-hour to forty-five minutes away!  She can wait that long…right?

No!  Find a restroom.  It could be that your partner has already been waiting for a while to tell you of their need.  Or it could be that ‘quick trip’ is going to hit a traffic jam.  Just do yourselves a favor and find a restroom promptly and efficiently.

The final issue I noticed was the food.  Diet changes are hard on everyone.  The greasy fare from fast food restaurants, the rich food from the wedding, and the over-processed food from the complimentary breakfasts create something of a perfect storm of indigestion.  Don’t get me wrong, I love a nice Carl’s Jr. Hamburger, and the wedding roast was fricking awesome.  But the dietary change for my wife, and for me, cause things to move a bit …. differently.  So when you are traveling, come prepared for things moving too fast or moving too slow.  Bring along some anti-diuretics.  Bring some Tums!  Or some anti-nausea meds!  Take care of yourself digestively.

So that’s about it for preparation.  Christy will be able to provide you a more complete list.  I’m just the dude on the outside looking in.  But to review…
·        TSA, annoying, but not intolerable
·        Formal dresses for female ostomates is very doable
·        Pack extra gear
·        Pack digestive aids

As we still have a bit of time left in this flight prior to our descent into San Diego, I would like to summarize a few more things about my wife.  Her preparation and execution of this trip was phenomenal.  I would be surprised if she didn’t have a detailed plan for more than a half-hour block of spare time during this entire trip.  Her preparation for herself and the kids, along with the detailed schedule, was amazing.

But what blew me away the most was the wedding reception.  This reception began at 5:00 and ran to midnight.  Christy spent most of that time in her beautiful purple dress dancing like a crazy woman.  And she was by far the best looking lady on that floor.  Every time we attend one of these wild shin-digs, I experience a profound reaffirmation of our love.  She is a wonderful woman, a snazzy dresser, and a very energetic and beautiful person.  Inside and out.

Thank you for sharing this flight to San Diego with me you Crohnie Bologna lovers.  If you have any requests for specific topics from me, please let Christyknow.  I’m not bashful, and will write about just about anything as I find time.  It is only finding time that is of an issue for me.


All the best.  Be well.  And keep on dancing like a crazy person!

Just Fine

What a small world.  My neighbor has IBD.  His friend wrote this book Just Fine: Unmasking Concealed Chronic Illness and Pain and my neighbor is featured in it.  The title says it all.  Through chronic illness, we find our way and are still Just Fine.  This book is an honest yet hopeful account of what people with all sorts of chronic illnesses live with.

It covers the diagnosis process, finding your way through the medical maze, dealing with reactions of family, friends and their reactions, lessons learned along the way, and more.  I love the individual biographies.  I found myself pouring over those first.  Much like eating dessert before the meal.
 
I related to many aspects in the book such as ‘You look just fine’ and ‘Ordinary people are faced with extraordinary challenges’.  One page after the next was filled with truths I could identify with and experiences of others that I could empathize with.  I kept feeling amazed at the level of strength and endurance, bravery and openness in these beautiful people.

Some parts of the book felt like the author had spied in on private conversations I have had with my twin sister; speaking things only we two would share with each other.  One featured person shared that he was having trouble accepting that ‘While others smoked and drank, he was the one who became ill.’  I have felt and shared that very same thing with my sister and husband.
 
I love the positive way each individual in the book took charge of their illnesses and found a way to make it work for them.  They are all clever and creative, hopeful and inspiring.

No matter what chronic illness you are experiencing, this book gives great insight into the navigation, positive outlook and forward motion it takes to find balance and peace.

It is my pleasure to share with you.

There is no ‘Secret’

I have been told, ‘You look healthy, ‘You don’t look sick’ or ‘You seem to have plenty of energy’.  Whats your secret?

Guess what?

There is no secret.

Not one.

You just have to keep trying.

I am lucky.  I have kids that depend on me.  If I don’t pull it together; their lives become uncertain.  When my children’s lives are uncertain, I become grumpy.  Their well being is more important than giving in to that hollowed out feeling that Crohn’s offers me.  So when I don’t feel well, too tired, exhausted, drained, and considering just laying in bed all morning, I have the great fortune of having two lovely sets of sweet brown eyes loving me, needing me to play my role.

And so I get up, dress up, and go on with my day.

I get lost in the small joys of tying little shoes and walking my kiddos to school.  The hot delightfulness of my morning coffee in the travel mug as my wee ones skip ahead.  The fact that I can shine through small talk with parents at the drop off, and head back home with my youngest to have a day of home-schooled preschool and trains.

Before long I have made it through my day and I can rest happy, knowing that I did it again.

Guess what else?  You Can Too.

Keep fighting, trying, pushing and giving.  Because you are strong enough, your family needs you, and in the end, it is worth it.  

Ostomies and Emotions A Family Members Reaction ~ Part 2

Here is the second part of A Family Members Reaction.  I must say I learned a lot about my husband and his experience through this article.  I love that after almost 16 years of marriage I am still learning something about him every day.  Even when he is away in Philadelphia.  My dearest went through changes that challenged him, made him stronger and more open to what must have felt impossible at the time.  He came through with flying colors and a year and a half after permanent Ostomy surgery we are stronger than ever.
Please enjoy the second part of my husbands post.

 

 

I don’t think I’ll mention any of the medically relevant stuff regarding the recovery period.  That is somewhat separate from the emotions one feels during the shock and awe phase of the surgery.  Anyways, I can write up that kind of article some other day.  In this second half, I’m going to focus on some of the nitty-gritty emotions a male-partner may feel; what I felt, after this change.

It is somewhat tuff on guys, being wired the way we are.  Or should I say, wired the way I am.  Certain things I just have no feeling about when my wife obviously expects me to ‘feel’ something?  So-and-so just got totally whatevered on facebooks?  Meh?  Some actor is doing something to someone?  Double-Meh?  So when it comes to day-to-day stuff regarding an ostomy, emotionally it is no different than how I felt about her before the ostomy.  There are three places where this changes: The Bathroom, the Ballroom, and The Bedroom.

Your bathroom will become stuffed with all sorts of gear-changing implements.  And an odd odor will begin to make itself known from time to time.  This wasn’t hard on me; although I personally do not do well with bathroom smells.  Emotionally, I felt something akin to resignation.  This is how things are going to be.  If it is not something I can control, why change yourself emotionally?  Like an average, emotionally despondent dude, I ignored what I couldn’t change and began fixing what I could.  I set up shelves and reorganized the master bathroom to increase storage space.  I installed an overhead heater to blow warm air on the toilet area where Christy sat to change her gear.  (We lived in Oregon and that master bathroom got SUPER-COLD during the winter months)  And I tried to do other little things to the bathroom to make it a more comfortable place to be.  I fixed things.  Guys, at least guys in my family, are fixers.  Give us an emotional problem, and we’ll try to do something to fix it.  So if your ‘man’ goes all ‘Home Improvement’ on you after you get home from surgery, he is probably accepting what he cannot change by changing what he can change to make life easier or more comfortable for you.  That’s what I wanted to do; what I attempted to do.

The ballroom is a bit of an extension to my thought on this emotion.  Not only does the ‘Ballroom’ represent a handy word I can use to have three consistent ‘b’-words in a row. (I know you all want to read about the bedroom, so I had to fit SOMETHING in to keep your attention between Utah and The Rockies)  The Ballroom represents public perception.  And, to a lesser extent, private attention.  It is the little-kid-with-thick-glasses syndrome.  That kid that has something different that distinguishes him from the normal crowd.  That kid has two options, to express and embrace those glasses, or to cover them up by using contact lenses.  Ostomy gear is much the same.  It was hard to see my wife’s, formally smooth belly replaced with a tan-colored ostomy bag.  Change, even change you cannot change, can be difficult to accept.  All I can say ladies, is that you need to provide some time to your significant other so he may accept and embrace that change at his own pace.  That is what helped me.  I had to have a month or two to ‘get used to it’.  An ostomy is nothing to be ashamed of, however, the initial exposure to something like this was, well…different.

I guess it is hard to explain; suffice to say, I was uncomfortable and afraid.  This was not my first experience with an ostomy; Christy had a temporary one earlier in our marriage.  So I will have to express a bit of what I was feeling back then, mixed into what I felt after the permanent ostomy.  I felt afraid.  Afraid I had somehow broken her.  Afraid of touching anything abdominal.  Afraid of causing her embarrassment or reducing her self-worth.  I was afraid I wasn’t loving enough, or too loving.  So I subconsciously feared that silly little bag hanging off of her abdomen.  And I needed some time to get used to that fear….and a doctor to tell me that sex wouldn’t cause her any harm.  I have a whole story about THAT from a half-dozen years ago that I’ll regale you with should you ask….

What was that other thing?  Oh…being uncomfortable.  Yes.  It is quite a change to have to ‘work around’ that little accessory.  And to get used to it.  I guess I was uncomfortable with how it felt, how it looked, and how my emotions were reacting to it’s presence.  I am somewhat bashful regarding the things that happen in the “potty”.  Anyone who has watched the American sitcom ‘Scrubs’ could identify how I am around “bathroom topics” by comparing me to Dr. Reid (played by Sarah Chalke…I believe).  The things people do in there should just not be discussed!  And if it is, you must use silly words!  And NEVER talk to people through the door in the bathroom!

And hey..if you are in there doing some ‘business’…turn the fan on to drown out the unmentionable ‘noise’!

Now these noises appeared in the living room at times.  Or at the dinner table.  Or I could see an ever-changing shape in the front of the clothing area.  Initially, it made me uncomfortable.  Why?  Because it was new, different, and outside my ‘usual’ comfort zones.  I’m sure Christy picked up on this.  To you “virtual passengers” accompanying me on my plane ride I will say this; in no way did this discomfort reduce my love, caring, or understanding for my wife.  I simply needed some time to get used to the change.  If I were to give any advice to you regarding this change, I would recommend wading in as opposed to jumping in; referring to the old swimming pool analogy.  Hell, you probably know your significant other way better than I do, so it is your call.  For me, wading in with sexy blouses, flowing dresses, and long t-shirts for the first two months was helpful.  It didn’t make me forget the ostomy was there, but it allowed me to process the change better; over a longer period of time.

 

That is the ‘private’ component to the ballroom.  Sexy outfits, similar to Awestomy’s Booty Shorts.  (I know you’ve seen the pic.  Yeah!  I’m married to that! Muhahaha!) But the ‘public’ component is a bit harder on a guy.  As you may know, Christy is very outgoing.  More so than me.  I’m more of a conformist in many ways; I don’t do things that are significantly beyond the social norm.  I run through my mind the things peoAwestomy_Review_Booty_Shorts_by_Christyple will say, or think, or JUDGE if they see my wife’s gear.  Emotionally, I experience two main things.  The first is the anger and pity I feel for our society.  In the United States we come out of a public school system that seems to encourage children to be horrible to that which is different.  Or apathetic parents who gossip in front of their children.  Or news stories talking about how horrible someone is for having that extra soda, smoking cigarettes, eating bacon, standing crooked, having big boobs, having small boobs, Kardashian’s ass, or crazy face tattoo guy.  Stories about a woman overcoming adversity, and living life to the fullest are rare on the headlines.  Oh..they are there, but they don’t ‘bleed’ enough to ‘lead”.  So we have a society that will judge my wife for having gear.  And I feel anger and pity for those participating in this non-empathetic mindset.  Don’t get me wrong…there are tons of bad people out there.  And my ‘understanding’ of people in these stories only go so far.  I guess I attempt to measure these things with the experiences I have, and always try to give people the initial benefit of the doubt.

But I digress.  Anger and Pity.  These initial emotions are what I feel towards those that will inevitably look down on my wife for the gear that she has.  The second component is fear; or perhaps an odd form of overprotectiveness.  I have a fear that someone will say something horrible to her on the beach, at the pool, or in a restaurant.  That fear drives me to hold her back at times.  I recognize that compulsion and do my best to avoid my unfounded overprotection.  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.

Now! On to the Bedroom!  A fitting time, as we have just hit a large patch of ‘turbulence’ and my laptop is bouncing dramatically up and down on my fold-out tray.  How Exciting!

I love sex.  I really, really like having sex with my wife.  And I feel no shame with the sex that we have; with or without the ostomy.  Sure, certain things had to change in our relations.  Some spontaneity was lost as she likes to excuse herself to switch out to a swim bag.  And as I mentioned earlier, it took me a few months to get used to the gear.  But within, say four months, we were back to our regular rambunctious selves.  Well…as rambunctious as two adults with little spare time and two very energetic children can get in this day and age.

At first, we had no sex.  She had to wait for six weeks or so to get cleared by the doctor.  So you have a good six weeks right there to get used to the gear.  After that, we waded into things using camisoles and night gowns and other mild…and not so mild lingerie.  Then the mild coverings were slowly removed from our routine and we simply started having our normal whimsical, as-you-are happy time.  It may be my nature to “wade into things” as opposed to “dive into things” that drove this process.  And the situation may be different from your significant other, but there it is.

Emotionally?  Well, as I said earlier, my emotions in bed were tempered with fear of causing more damage.  A lot of stuff happens down there; a lot of impacts, and jostling.  To disrupt that area with some over-vigorous force would naturally cause problems…right?  Well, I was wrong about that.  And it took a doctor asking me how things were in bed to attain this realization.  The realization that when Christy had her first temporary ostomy, my lack of marital participation was completely stupid.  After that, I don’t know what to say.  As long as you are there emotionally, and participating eagerly, it doesn’t really matter much to us guys.  Dress up in something skimpy now and again.  Be creative.  And for the good lords sake…if you like something we do with you in bed TELL US!  We men are notoriously bad mind-readers; and as a loving spouse/husband/partner we simply want to give you the most pleasure we can, in the way you like it best.

But, that really has nothing at all to do with ostomies.  It is just normal pillow-stuff.  And that’s what sex will be once we get used to the gear.  Normal.  Sensual.  Real.  If you had good sex before the ostomy, in a very short time, once you and your partner are comfortable with yourselves again, you will have good sex again.  It may take a week, it may take a couple months, it may only take a little glint in your eye.  But sex is actually one of the simpler problems to solve.  One last thing before my laptop battery dies.  We men may not be good mind-readers, (we really suck at it actually) but, we can read emotions fairly well during sex.  If you are not into it, it’ll make things uncomfortable or distracting.  I am sure the opposite is true, should the guy not be emotionally invested.  If you feel that emotional separation during sex, either of you, don’t give up on the moment.  Have more sex.  Have conversations about what you like to do during sex.  And HAVE MORE SEX.  Remember, nerve endings have changed down there.  Something you liked before the surgery may not be as mind-blowingly wonderful as it once was.  You’ll need to work together to find those new, great things that will work as good, or better than the old things.

So have more sex!  It is easy to get out of the habit due to stress, or work, or life IN GENERAL.  A life change of an ostomy can create an emotional wall if you build it brick-by-brick.  So, knock down that wall with frequency and passion.  If you don’t have the passion, have more frequency.  The passion will return.

Well.  That’s all I got for this flight.  I think we are descending into Philly.  I really appreciate you taking the time to read my ramblings.  And for giving me someone to talk to on this long-arse flight.  I hope what I have written can be of some help for those going through some emotional issues, either ostomate or boy-toy of ostomate.  If you want to hear more from me, or if you want me to expand on anything I have said.  Just let Christy know.  And don’t forget to like her on her facebook page!  She lets out a happy cheer gets a big ol’ grin whenever someone does that.

My final message to you as I rapidly descend in this turbulent ‘flying’ aluminum tube of death; please remember to keep a positive outlook on life,  find enjoyment in the little things, and to be strong.

Reuben
aka Husband to Christy at http://www.crohniebolognaibd.com/