Category

Let’s be Social

There are lots of ways to participate in the community. I do my best to be a good representative of the Crohn’s, IBD, and Ostomy communities. Please join me in my Social Adventures!

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.

Because I Love Connecting With You

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

#GetYourBellyOut

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

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

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

And then this happened:

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

 

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

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

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


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

 

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

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

Here’s a link to that Huffington Post article

There were more news outlets as well….

Wallstreeter

Women’s Rights News

Neatorama

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

CCFA Take Steps San Diego~ De Anza Cove

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

Last years team pic.
Last years team pic.

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

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

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

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

The first booth was for a pharmaceutical company.

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

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

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

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

 

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

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

 

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

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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.

Happy Earth Day ~Ostomy Wishes.

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

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

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

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

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

Happy Earth Day my Sweet Bolognas.

The Great Bowel Movements Pass It On initiative~ Sara Ringer

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

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

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

Vote For Sara.

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

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

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

Thank you my Sweet Bolognas 

The Great Bowel Movement Pass It On Initiative Nominee!

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

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

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

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

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

Gratefulness is Beautiful

 

 


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

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

So, are you ready? Here it is:

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

Why?

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

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


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

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

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

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

 

UNDY 5000 Her Perspective

CrohnieBolognaIBD 2014 Team Sign
Walking Cancer Out the Door!


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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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 

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. 


Third Annual WEGO Health Activist Awards!!

What the What?!!

There I was just being myself and out of nowhere I was nominated for the Best in Show: Blog Award in the Third Annual WEGO Health Activist Awards!! 

I’ve had a great time nominating the people who inspire me but never thought I would be nominated. How cool is that?!

Wouldn’t it be the best ever if someone in the IBD community won an award for each category? I know that IBDers are represented and with more votes could actually succeed. What a great way to get the word out and educate the public even more. Something to aspire towards for sure.

If you want to participate in nominating your favorite health advocate check the link below. It’s a great way to give a thank you and thumbs up to the advocate(s) that change your world for the better.

Take a moment to recognize your Health Activists Heroes by endorsing them for the #HAAwards from @wegohealth:https://awards.wegohealth.com/nominees

A Very Happy Ostomy Day

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

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

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

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

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

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

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

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

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

It was a perfect Ostomy Day.

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.

Happy Mothers Day

My Sweet Mama.


Happy Mothers Day to all the Mamas out there. The Moms who have IBD, support a child with IBD, and all those Mothers who we have found on our life journey who love us like we are their own. 

Have a great day ladies 

This is a pic of my Mama. I wasn’t born to her, but she loves me as her own. That means the world to me and my children. I have learned so much from her love, honesty, and life example that she shows me every day. Every aspect of my life has changed for the better because of her acceptance and guidance. I am proud to tell you that I am a better wife, mother, and person because of her. I am honored to be loved by this brave, selfless, and strong woman.

April is Autism Awareness Month

April is Autism Awareness Month.  In our home, Autism Awareness happens every day.  So for the last day of April I share with you this tiny peek into how that initial discovery worked out for us.  What we are doing now.  How those efforts are panning out, and what we are still working on.  

Shine a light on Autism.  


An Autism Diagnosis is either a confirmation of a suspicion, or it’s an exposure of a truth most parents saw, but were characterizing as other behavioral needs. 


After diagnosis there is a sense of loss and grief.  The idea that your child is just going through a rough patch and will overcome this in a matter of months is over.  What caused this?  Is there a genetic component?  Is it environmental?  Is it diet?  Is there anything more I can do to make this better?   The questions build from there.  The reach to understand what caused this thing is all consuming. 

No one goes into parenthood planning for their child to struggle.  No parent signs up for the laundry list of worry.  Will he grow up and be an independent adult who goes to college, has a career that makes him happy, and will pay his bills? Will he have the social skills to find a loving spouse and someday make beautiful children that he can nurture?   By then will he have gained the know-how to keep it all together?  The dreams you automatically assume for your child at birth are replaced with questions. 

Then there is the question of how to move forward.  Here is what we did:
We suspected from early on that something wasn’t quite right.  Our son screamed a lot, wouldn’t sleep, was verbally behind and socially outmatched by his peers.  For a while we wondered if he had a hearing problem and got him tested.  The older he got, the further he fell socially behind his friends, even the ones much younger than him.   In addition, we experienced delays in speech, social quirks such as lack of eye contact or inability to intuit others emotions.  Compulsive things like shutting all doors, lining things up, and toys that only work ‘just so’.  He experiences other manifestations like hand flapping, rocking, spinning, and head butting.  In addition, we observed a limited diet stemming from an inability to tolerate sensation of certain foods.  He quite often becomes overwhelmed by self care tasks such as dressing, potty, washing body, hands, and or face, and brushing teeth.  He would cry from tummy aches and have digestive difficulties and even accidents.  We also help him cope with emotional outbursts of aggression and an inability to self regulate.  If everyone else is play fighting like a ninja, he is really fighting and hitting like a ninja.  If kids are running and screaming, then stop; he has a hard time turning it off, and will often just continue screaming until we help him stop.

It was beyond obvious that something was seriously wrong when we began to tailor our life around what we felt our boy could tolerate.  We believed our doctors suggestion to not worry until he was three years old.  We ignored that inner nagging truth that something wasn’t quite right.  We had allowed ourselves to be assuaged by the kind words of friends and family for too long.  No one observes your child and tells you, ‘Girl, you need to get your boy some serious help.’  Instead we got plenty of, ‘My son does that too.’  or ‘It’s hard being three.’  Kind words from good, gentle people.   It became clear once we realized our family had been avoiding functions and outings.  We even prepared for ‘quick exits’ when we did venture out.  We stopped eating at restaurants.  The pattern we had begun to live was not normal or sustaining.  We took our son to the doctor again. 

We were assured that all boys are slow to talk; he will speak when he has something to say.  You should spank him as we have not provided good enough discipline.  We’ve spoiled and over indulged him.  You are comparing him to older siblings- it is not helpful to compare children.  In the end, it was suggested that our son may have Oppositional Defiant Disorder. 

At that point we asked for a referral to the local children’s hospital to have him tested.  We did not believe that he was oppositional defiant, but something else was going on.  The waiting list was eight plus months for an appointment, and a year before he would get a full exam.  That was too long a wait for us as we felt we had already spent so much time going in the wrong direction.  We took our son to the local special needs branch of our school system which does a comprehensive screening of social, speech, cognitive, fine and gross motor skills, and hearing tests.  Our boy was classified as Autism Spectrum and we were offered resources.  However, we were also in the middle of a move to another state and could not accept services or the IEP that was offered.  Knowing what I know now, and looking back on that decision, I should have gotten the IEP before leaving the state. 


We told family and friends about our sons diagnosis as we needed to be surrounded in support and understanding.  It immediately made a difference in how he was treated by some family members, who until then, were working under the assumption that our son was an oversensitive hand full who refused to sit still.  Our son has been treated with care and compassion from that time on. 
From there I began to read.  I stayed up late every night staring at my computer, taking notes, comparing research, diet, varying cultures approach, opening my mind and widening my heart to Autism.  I learned from those that went before me, and actively applied knowledge I felt confident I could fully implement correctly to achieve the desired results.


The main change we made was to switch to what is known as the ‘Autism Diet’.  It is best described as Gluten Free, Casein Free.  Gluten is the protein composite in foods processed from wheat.  It gives breads rise and texture.  Gluten is also found in soaps, lotions, and as filler in foods such as lunch meat.  Casein is the protein in mammal milk.  It is a main ingredient in cheese and is a food additive. 

Each family begins this diet differently.  I only wanted to eliminate those things that were a deficit to our son.  I began with removing the Dairy and Casein.  Basically because I knew the code words for it and felt I could do that successfully.  We quickly saw improvement; less spinning and screaming.  One Saturday morning my husband and I were sitting in our kitchen enjoying each other over coffee.  He looked over at me and asked, “Do you hear that?”  I look around; trying to catch what he was referring to.  “No, what are you talking about?”  He nods his head towards our son quietly playing.  “It’s quiet.  He’s not screaming.”  We knew from that moment on that we were never going back to dairy.  Hope grew that day. 


Emboldened by our successful results, we removed Gluten.  Our son began to sleep better and we started to get more words versus grunting, pointing and melt down.  Over time he started to have more speech that we could easily understand.  We could now brush his teeth and wash his face.  He became potty trained during the day.  He began to eat foods he never tried before.  He could ask for what he wanted.  He began to sing and hum on his own.  One evening he crawled in bed for cuddles.  He noticed the sparkles on our bedroom ceiling and began to sing ‘Twinkle Twinkle Little Star’ in his sweet little voice.  I know I had sung that song to him a hundred times; not really knowing if he was taking it all in.  And here he was singing it to me.  I gazed over at this wonderful boy in my arms memorizing his features as he formed the words, eyes dancing over the sparkles up above us.  I could feel my heart fill with love, joy and gratefulness.  In the middle of my mommy moment he looked over to me and said, “C’mon Mama, sing!” And so we did.

He still had horrid rashes.  Red, raised dry patches that would bother him, they were weepy and would smell as he would not tolerate medical tape to apply a covering.  He would itch all over and cry.  So after reading, we cut out soy as well.  His rashes are better and he only gets them when he inadvertently eats something he shouldn’t. 

Our new doctor suggested we avoid food dye for our lil’ guy as she had read a study showing benefit.    We eagerly followed through, welcome to have a doctor validating, versus telling us we were nuts for trying.  Our doctor also fully agrees with our use of the Autism Diet and has commented on the improvements in our son over time with her exams during his well care visits.

In total we are Gluten Free, Dairy/Casein Free, Soy Free, and Food Dye Free- particularly red dye. 

I have always been that mom who is nutritionally aware and made most of the snacks my children ate.  Baking Gluten Free is quite similar to what I was doing before.  Just different ingredients headed towards the same delicious end goal.  I bake our bread, muffins, cookies, cakes, pies, pizza dough and every other yummy thing any kid would love to eat.  I make his cheese and am a militant label reader.

Our pantry went through a much needed overhaul.  Convenience items such as Goldfish crackers, wheat thins, and most every store bought cookie, pretzel or pastry had to go.  It also meant giving up pre packaged foods in general.  Standard macaroni and cheese, pre packaged soups, sauces, and pasta all found a scrumptious yet safe replacement.   We now enjoy beautiful, delicious food made of unprocessed, basic ingredients without those between meal crackers or crisps. 

We still have more work to do.  Now I am restarting the process of getting our son evaluated in our new state to get an IEP in place so he can get the various therapies on board.  I am still working on his sense of danger, i.e. He has none, so darting into the street is a common thing we are trying to help him with.  We are helping him with transition away from his routine.  He is learning patience, calming techniques, quiet voice, social skills, (most of our time is spent on social skills) and more. 

But we have gained so much.  Because of the Autism Diet he has gone from a frustrated, confused, screaming little person to a boy who can communicate, count, sing, draw a picture, and be happy.  He has come so far and will continue to improve.   


There is no quick fix or stepping in to save the day.  It is the every day, all day, work, patience, diet, guidance and energy put out by dedicated parents that gets the job done.
The effort and satisfaction in implementing the Autism Diet feels like a rescue mission for my child’s future. No surrender and no giving up until he can be successful on his own.

The Jump Off

I took off my purple today – all but my awareness ear rings- and put on my Ask Me About My OSTOMY t-shirt as I went to pick up my daughter from school. 

When I wear my ‘Ask Me’ gear I stand a little taller and try to look a little more approachable in my efforts to be a good IBD Ambassador.  The general public has no idea it is IBD Awareness week.  And that is the whole point.  That unknowing is, in part, preventing a cure.  Hopefully I will get to be the person who opens their eyes for the first time.  I don’t know what will make them uncomfortable or what their taboo level is.  Certainly Poo is at the top of most peoples’ list.  So I go slowly and gauge their reaction to guide the words I use to educate.

After collecting my girl child; I headed for the jump rope club.  On the way I noticed a Grandpa checking out my shirt.  He came up to me pointing at the clever logo and laughed saying he loved it.  I smiled and asked, “So you know what an Ostomy is?”
“No, but I like your shirt.”
“An Ostomy is the result of a life saving surgery, and I have one.”
“Oh really?”

From there we talked about Irritable Bowel Disease, that some days we have to try harder than others, he asked if that was like Diverticulitis, what exactly an Ostomy is, his surprise at my age and apparent level of health and vigor.  He delicately asked if I can still be ‘amorous’ and I confirmed that our marriage is sound as the British Pound.  I was relieved he did not think IBD was diarrhea.  Then I asked him to please remember my happiness if any of his family or friends ever has to think about getting an Ostomy one day.  He stated that I would be hard to forget.

After that he challenged me to a jump off next week.  I told him he better practice or be a good sport about losing.  Then he winked at me and left.

What a wonderful way to wrap up my IBD Awareness Week.  I hope I was able to educate with positive energy.  I wanted for him to see that I am just fine and so is anyone else with IBD.

 

Today I Wear Purple

IBD Awareness Purple

IBD Awareness Week has been challenging, wonderful and filled with hope.

I shared about things in my life that are uncomfortable for me to talk about but in the end encouraged people in ways I would have never dreamed.

I sported my Ask Me About My Ostomy t-shirt and Hoodie and got some great questions.

I educated my new Doc about how cool it is to be an Ostomate. I see her again today and will continue to be a beacon of IBD Awesomeness!! as a reminder of what IBD can be if you never give up.

I challenged stereotypes, encouraged questions, and lived boldly. It has been a glorious IBD Awareness week.

Today on the last day I wear purple.  These ear rings are special to me.  For one, they are a gift from my twin sister.  She is more than a twin, she is my best friend.  She has always been supportive and loving, a listening ear and encouragement.  She inspires me with her very matter of fact way of managing her IBD on her own terms.  She is a fighter.  I love that about her.

Another special thing about these ear rings is that they were made by a woman who battled, but in the end died as a result of her IBD.  Each time I put them on I think of her hands crafting them, her fighting spirit, and her positive, hopeful attitude.

They are a reminder of how much we must fight, how loud we must be, and how long we must try.  Because our very lives depend on it.

Community

 

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

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

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

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

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