Wednesday, January 23, 2013

Guest Story: Christina's Story

We're excited to share Christina's story with you all! Christina blogs about her experiences living with Crohn's on 'The Diarrhea Diaries'. You can also find her on Facebook and Twitter!
The first time I heard the term, “Crohn’s disease,” was when a friend of mine told me that she was not going to name her brother as the guardian to her children in her will. We were both considering what we would do if the unthinkable happened and we died before our children were adults, and that’s when my friend told me that her brother had Crohn’s disease. Even though she loves her brother, my friend didn’t want to leave her children to someone who was always sick and at risk for multiple, life-threatening surgeries. Not only would it be hard on her children, but it would be hard on her brother. At that moment, I equated Crohn’s disease with misery and death and my heart broke for my friend’s family.

A few years later, I was lying on the bathroom floor of my local emergency room drenched in sweat. I’d had strange “episodes” every six months or so when I would wake up out of a deep sleep in labor-like pain. It would last a few hours until the pain broke in a wave of nausea so intense, I would leave the restroom shaky and exhausted. During my third “episode”, the pain didn’t give up but continued to grow. I decided I’d had enough and would sell my soul for pain-relief, so my husband drove me to the emergency room while I held trash bags in my lap. I didn’t make it very far before the pain “broke” in the emergency room bathroom; and by the time I was seen by a doctor, I was already recovering.

When the emergency room physician told me that my CT scan indicated that I had Crohn’s disease, I thought of my friend’s brother. I immediately labeled myself no longer fit to raise another person’s children. I later learned that the pain I’d felt was due to a partial small bowel obstruction, and I would come to find out that these agonizing episodes would be my constant, shadow companions.

When I saw a gastroenterologist for the first time, my colonoscopy showed a very mild form of Crohn’s. When I had my next partial small bowel obstruction, I prayed for the pain to pass as I vomited everything I’d eaten for days. I was pretty sure this wasn’t a “mild” case of anything, so I found a new doctor who diagnosed me with moderate-to-severe Crohn’s disease after a new round of tests. He showed me pictures of the high-grade stricture that had formed from ulcers that could only be visualized by swallowing a pill camera.

I immediately started Remicade but the stricture continued to narrow my bowel. I was hospitalized multiple times with a nasogastric tube, bowel rest, and steroids; and I couldn’t eat without fear that the food wouldn’t make its way through my small intestine. I missed weeks at work and was devastated when I missed my son’s first slumber party. I had three small bowel resections in four years and my friend’s brother has yet to undergo his first surgery. If I wasn’t fit to raise someone else’s kids in an emergency, was I even fit to raise my own?  

The answer is “yes”. A million times yes. I might not be able to go on every field trip or travel as easily as others, but my husband and I can make lasting and important family memories at home. My kids tease me for taking so many naps, but I laugh along with them. I’ve shoved all of my prescription pill bottles in a red bag and we call it my “bag o’ pills”. When I have to use the restroom, I say I have to have “Crohn’s” which is code for “get out of my way!” And most importantly, I take the medication my GI prescribes to hopefully avoid future surgeries. I take care of myself when I’m sick so I can take care of them. And I’m happy to say, my daughter and son are intelligent, interesting, and funny kids who are growing up to be wonderfully compassionate people.

My disease is a huge part of me but it doesn’t define me. It’s given me the opportunity to help others who are also sick by sharing a part of me on my web site, Blogging has allowed me to meet very strong, community-oriented individuals whom I wouldn’t have had the chance to get to know if I didn’t have my disease. And for that, I am truly thankful. 


Thursday, January 3, 2013

5, 4, 3, 2, 1 - Happy 2013!

The clock struck midnight, and just like every other person around the world us here at Gutsy began to reflect upon the year we had. While we chatted about the memories, we laughed, smiled and came to the realization that we had a pretty awesome year! So here we have compiled a list of our top ten favorite moments of 2012!

1) Butt campaign

This year we dove into the world of a social media campaign! We formulated the ‘Butt Campaign’ where people had the chance to be a Pain in the Butt!. Throughout the making and promotion of this campaign we had the chance to meet some unbelievably inspirational IBD-ers and work with people who had the same passion as us. We had hundreds sign the pledge, over 2000 views on the video and we are hoping it continues to grow as time progresses. We think this deserves to be in the top moments of 2012 for the awareness it brought to IBD and the people it connected.

2) Casey Abrams pledging to be a ‘Pain in the Butt’

Just hours after we shared The Butt Campaign with the world an email appeared in our Gutsy Generation email notifying us that Casey Abrams, American musician and former American Idol contestant had not only retweeted our campaign but had also pledged to be a Pain in the Butt, and for that reason we think this is an ultimate win!


3) E-Cards

We introduced the world of IBD to the wonderful world of “Ecards” or as some people call them, “memes”. In the life of an IBD-er it is we know there are crappy days and unpleasant medical tests but we believe even though we spend hours upon hours on the toilet and sometimes look at like a 90 year old crippled over in pain that we should laugh through the tough days and appreciate what we do have.

4) Guest Post Series
This year we had a strong guest post series featuring IBD-ers from far and wide sharing their struggles, triumphs and laughs with us. Some of our esteemed guests included The Great Bowel Movement, Gut Inspired, A Guy with Crohn’s, Love for Mutant Guts, LOOP, and My Journey with Crohn’s.

Surf around for some inspirational IBD stories!

5) Being featured on other blogs

We believe that meaningful awareness and advocacy comes from partnering from other passionate and gutsy organizations. We loved being featured on blogs such as,

Girls with Guts

LOOP ImproveCareNow

My Journey with Crohn’s

And even getting a ‘celebrity’ shoutout by Disease on My Sleeve.

6) Niagara International Half Marathon

What happens when two stubborn, colon-less girls get the idea in their head that they are going to run a half marathon? Well it happens, of course! Through hell or high water we (Jennie and Taylor) trained hard and completed the Niagara Falls International half Marathon together sporting our homemade “Colonless #1” and “Colonless #2” gear all 21.5km. Awareness and ambition, showing others that just because you have IBD doesn’t mean you should let IBD have you.

Read about it here.

7) IBD Adventures Machu Pichu trek with IDEAS

A 4-day hike through the mountainous backyard of Peru is not the typical way to celebrate 2.5 months after surgery, but Jennie found it fitting. After joining IDEAS for their IBD Adventures (listen up, the next trip is in China!) in the pursuit of “changing attitude with altitude”, Jennie had the most incredible time doing something she couldn’t have dreamed of. This is her favorite picture, showing that ostomates have bags but not baggage.

Read about it here.

8) Awesome IBD Organizations

As an IBD-ers we kind of (okay we are going to be honest here) we have IBD ‘celebrity’…crushes. Not crushes in the way that we would like to cuddle and kiss these people, but crushes in the way that we just adore what they are doing in the world of IBD and admire them greatly for that. This year we were blessed to have developed some strong IBD relationships, and had a few moments where we have had to pinch ourselves to make sure we weren’t dreaming. We’ve developed friendships and supports with Robbie's Rainbow, Girls with Guts, Disease on My Sleeve, The Great Bowel Movement, Awestomy, John Bradley (Author of the Fowl Bowel), and IDEAS just to name a few. In addition to these friendships, we have had a couple moments that have left us asking our friends and family to pinch us – including getting an email saying Russell Brand and Justin Beiber (the fake ones, but still – right!) were now following The Gutsy Generation on Twitter as well as one of our favorite IBD guys – Brian Greenberg! All over so many awesome gutsy friendships made this year!
9) Number of followers

As of today, The Gutsy Generation has 876 likes on Facebook and 488 followers on Twitter. This number has grown exponentially throughout 2012 helping us raise awareness about IBD. 2013 will hopefully bring us into the 1000’s – expanding our reach farther and wider educating all about IBD.

10) People who 'came out of the stall' - Matt Light, Ken Baumann, Shayne Corson, David Gerrard
This year brought a lot of celebrities and athletes that came out publically about their IBD and we couldn’t be more pleased about the gutsy awareness that is being shared with the world.
Shayne Corson Talks about his Ulcerative Colitis
Here is Ken Baumann’s article in People magazine and a screenshot of him ‘favoriting’ our tweet about it!

We wish you all the best in 2013. May your medications be helpful, your toilet paper be soft, and your bowels be healthy! Happy New Year Gutsy Guys and Gals!

With love and (minimal) guts,
Jennie + Taylor