Posts filed under ‘Advocates’

Raising Awareness One Day at a Time

Happy Crohn’s and Colitis Awareness Week everyone!

Today marks the beginning of Crohn’s and Colitis Awareness Week 2013 and more than ever, I can’t stress the importance of this week for raising awareness and educating others about inflammatory bowel diseases.

Before Dan was diagnosed, I didn’t know much about IBD. In fact I was one of those people who thought IBD and IBS were one in the same (I now know that they are most definitely not).

In the almost seven years since Dan was first diagnosed with Crohn’s disease, I have learned more about these debilitating diseases than I ever imagined I would. I have witnessed the good and the bad- colonoscopies, hospitalizations, surgeries, medications, tens of thousands of dollars in medical bills- you name it, Dan and I have been through it.

I have also been able to raise awareness and educate others who knew nothing about the disease learn about why Crohn’s disease and ulcerative colitis are not just pooping diseases. Through Team Challenge and Take Steps, over the past three years Dan and I raised over $21,000 for research and education of Crohn’s disease and ulcerative colitis.

But I’ve also had the pleasure of meeting incredible people who are battling these diseases and have become my second inspiration for raising awareness.

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December 1, 2013 at 12:45 pm Leave a comment

Back to School with IBD

Sorry for the hiatus again- I am still getting situated into a new commuting lifestyle and figuring out how to balance my time between work and the blog is proving to be challenging. My plan is to continue to blog but I am not sure how frequently it’ll happen. That being said, I will do my best to make the posts that I do write extra special!

The start of the school year reminded me of those days and made me think about all the young kids and teenagers I know who have Crohn’s disease and ulcerative colitis. I don’t have children but I can sympathize what it’s like to go to school feeling different. I spent my junior year of high school in and out of classes because of severe anxiety and agoraphobia that eventually landed me at home for the rest of the school year (I’ll elaborate more on that in another post).

Going to school can be difficult when you have an illness but it can be especially hard when you have IBD. A nurse at Seattle Children’s Hospital recently authored a blog post for the hospital’s website with tips for heading back to school with IBD. The tips were very informative and I wanted to share them and elaborate on them.

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September 7, 2013 at 9:17 pm Leave a comment

Clearing the Air About Crohn’s & UC

There’s been a lot of confusion recently inside and outside of the IBD community on the differences between Crohn’s disease, ulcerative colitis and colitis and whether or not you can have both diseases or not. Because of all the confusion, I asked Dan’s gastroenterologist, the amazing Dr. Deborah Proctor, medical director for the Yale Inflammatory Bowel Disease Program, some basic questions to get some clarification.

What are the main differences between Crohn’s disease and ulcerative colitis?

Crohn’s disease is one of the major types of inflammatory bowel disease. Crohn’s can affect any part of the gastrointestinal tract from mouth to anus.

Ulcerative colitis is another major type of inflammatory bowel disease. Within the gastrointestinal tract, ulcerative colitis affects from the rectum up to the colon (the large intestine).

 What is Crohn’s Colitis?

It is a type of Crohn’s disease that affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others. Crohn’s Colitis does not mean you have both Crohn’s disease and ulcerative colitis.

Can you have both Crohn’s & UC?

No. You either have Crohn’s disease or ulcerative colitis, but not both.

Can your diagnosis change over time?

Yes. Some people are diagnosed with one disease and the diagnosis is changed later in life (my friends like to call this being upgraded). Ulcerative colitis can change to Crohn’s disease; however, Crohn’s disease CANNOT become ulcerative colitis.

Ulcerative colitis is a diagnosis of exclusion- there are no fistulas and it only involves the colon. Once a patient has a fistula, the diagnosis becomes Crohn’s disease.

What is colitis?

Colitis is a generic term for inflammation in the colon. It is often used to describe an inflammation of the large intestine- colon, cecum and rectum. Colitis may be acute and self-limited or chronic. It broadly fits into the category of digestive diseases.

Crohn’s disease and ulcerative colitis are considered types of colitis; however colitis alone is NOT an inflammatory bowel disease.

Are there any other types of inflammatory bowel disease?

Indeterminate colitis- this is a diagnosis given when a doctor cannot tell which type of inflammatory bowel disease the patient has. There is an overlap in some symptoms and sometimes only time will tell which disease the patient has.

How should you refer to inflammatory bowel diseases then?

You can say Crohn’s disease & ulcerative colitis or, alternatively, inflammatory bowel diseases. In theory, you can say Crohn’s disease and inflammatory bowel disease, but in my mind, since Crohn’s is a form of IBD, that seems exclusionary and also redundant. To say Crohn’s disease and colitis is inaccurate. The easiest thing to do is, when talking about both diseases, to say inflammatory bowel diseases and call it a day.

August 9, 2013 at 4:15 pm 2 comments

Tell the Cincinnati Police Department that an #OstomyIsNotATragedy!

Earlier this week, a story came out on WCPO, a local news station in Cincinnati, about the Cincinnati Police Department’s newest initiative to try and deter at-risk youth from entering into a life of violence. Sounds great, right? Well it would be if they weren’t using images of people with ostomy bags as the deterrent. In fact, in the story Lieutenant Joe Richardson says,

“You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention, by limping down Warsaw Avenue with a colostomy bag.”

If that’s not offensive, I’m not sure what is.

Well, the IBD community is fighting back against this distasteful discrimination against those with Crohn’s disease, ulcerative colitis, colorectal cancer and other ailments who live everyday with ostomies and lead full, meaningful lives.

Yesterday, the Huffington Post ran a piece I wrote with Stephanie Hughes from The Stolen Colon about this new initiative and why it’s not okay to further stigmatize ostomates. Here’s a snippet from the piece:

There are more than 500,000 people in the United States living with ostomies for a variety of reasons, including Crohn’s disease, ulcerative colitis and colon cancer. These people live normal lives — they have meaningful emotional and physical relationships, hold jobs, and go swimming, rock climbing, sky diving and every other activity under the moon. Ostomies, for many, are not a punishment — they often mark the beginning of a new, pain-free life.

There is also a petition circulating urging the police department to apologize and stop discriminating against ostomates.

Lastly, we are using the hashtag #OstomyIsNotATragedy on all social media outlets to track people’s efforts to reach out to the CPD and urge them to stop this initiative.

So get involved everyone! Sign the petition and take to the social media universe and let’s all stand together telling the Cincinnati Police Department that an #OstomyIsNotATragedy!

August 2, 2013 at 9:24 am 1 comment

Guest Post: Living with an Ostomy

I am about a month in to my new job and sadly, life hasn’t settled down enough for me to get back into the blogging swing of things. Therefore I bring you another AWESOME guest post to bridge the gap while I am unable to post.

As I wrote earlier this month, I got to meet Stephanie Hughes at the Virginia Wine Country Half Marathon where we were both participating and fundraising for Team Challenge, CCFA’s endurance training program. I read Stephanie’s blog, The Stolen Colon, and loved how positive she was (she’s also pretty funny- check out her Ode to a Rectum). So I was extremely excited to meet her and get to know her (and find out how similar we are).

Stephanie and I before the half marathon

Some quick background on Stephanie: she was diagnosed with Crohn’s disease in 1999 when she was 13. After battling with the disease for over a decade, Stephanie had most of her colon removed on May 7, 2012 and was given a permanent ostomy. And just two days after our half marathon, on June 3, Stephanie had the rest of her colon removed.

Below Stephanie talks about living life everyday with an ostomy.

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June 25, 2013 at 8:02 pm 3 comments

Team Challenge!!!!!!

Today’s blog post is long overdue. I have had a lot going on in my personal life- getting a new job, trying to find (and failing) an apartment in a new state while starting the new job, training for Team Challenge, etc.- that the blog fell to the wayside. I have not given up on it! It’s just on a little hiatus.

TEAM CHALLENGE

I would be remiss if I didn’t do a post today. Today was the Virginia Wine Country Half Marathon. For the past 16 weeks, I have trained with a team of amazing people to walk the half marathon with Team Challenge, CCFA’s endurance training and fundraising program. We were out bright and early on Saturday mornings, rain or shine, hot or cold, racking up the miles to get to this point. I am floored by how much I accomplished. Prior to March (our first training), the most physical activity I had done in recent years was hike 1-2 miles with my dog, and even that would make me wheeze. Here I was walking 10 miles and, while I was in pain, it was doable. That is an AWESOME feeling.

8 mile training

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June 1, 2013 at 8:02 pm 3 comments

Guest Post: The Silent Battle Before an Ostomy

Today’s post comes from Brian Greenberg, the man behind the Intense Intestine’s Foundation. Brian has battled Crohn’s disease for years and, two-and-a-half years ago, became an ostomate. Despite having an ileostomy, Brian refuses to let his disease get in the way of his love for the outdoors and life. Below he talks about the internal struggle many patients go through prior to getting an ostomy.

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April 17, 2013 at 10:50 am 1 comment

Health Activist Writer’s Month Challenge Day 10

It’s often hard to like pictures of ourselves– post your favorite picture of yourself.

I know I’m not supposed to use words to go with this but just want to give context to the photo- this was taken in 2009 at our wedding.

 

April 10, 2013 at 8:49 pm Leave a comment

Health Activists Writer’s Month Challenge Day 9

I am WAY behind in this challenge so I will be playing catch up in the next few posts but I wanted to begin by responding to today’s prompt.

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

I need to begin this response by saying that I am neither a parent with a health condition nor the parent to a child with it. I am the wife to a spouse with Crohn’s disease. Being his caregiver is a full-time job in addition to my actual full-time job.

Being a caregiver isn’t easy- it means putting the needs of your significant other or child before your own. It means dropping what you are doing to help them, whether it means going to a doctor’s appointment with them and going to work late or getting woken up at 3 A.M. to go to the emergency room. It means keeping track of someone else’s schedule in addition to your own. It means, sometimes, cooking special food targeted to your loved one’s dietary needs which differ from your own.

So what do I hope I’m doing right? I hope I am advocating for his best interests when it comes to treatment the right way.

As someone with a very outgoing, sometimes abrasive, personality, it’s easy for me to stand up for my husband when it comes to his treatment. I’m not afraid to ask questions at his doctor’s appointments to make sure he is getting the best care possible. I’m not afraid to annoy the nurses while he is hospitalized if he needs something and hasn’t received it.

Sometimes, I feel like I am overdoing it by not allowing him to have his own voice. I try very hard to make sure there is a balance in which Dan is able to advocate for himself and discuss his concerns and I can voice my concerns. However, there are definitely times where I am overpowering and Dan definitely just defers to me. His doctor often laughs at me because I’ll answer her questions before he can. I can also recite the dates of his hospitalizations, surgery, when he was diagnosed, and when he started Remicade by heart and respond to those inquiries without skipping a beat.

While I may be overdoing it, it’s just out of love. As a caregiver, I want to make sure Dan is receiving the best treatment possible. If I come off as intense or rude, I’m sorry but that’s just who I am and how I get things done.

April 9, 2013 at 2:03 pm 1 comment

Health Activist Writer’s Month Challenge Day 5

“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible? What’s your one, three, or five year plan for your Health Activism?

Man is this a hard one to answer! There are a lot of things that I wish I could do as a Health Activist yet aren’t possible due to my expertise/full time job. So if these weren’t barriers, where are the top three things that I’d like to do as a Health Activist:

  • Become a Professional Patient Advocate: I know this sounds funny since we are all advocates in our own way but there are programs out there that allow you to become a certified Patient Advocate. If time/money/etc. were no problem, I would want to become one. Over the past six years, I’ve seen how advocating for Dan has really improved his quality of care. Unfortunately, not everyone has someone who is comfortable speaking up for them. I think I could be a great patient advocate for those who need ones to help ensure that they understand their disease, their treatment plan, and their rights.
  • Destigmatize Inflammatory Bowel Disease: It’s unfortunate, but there are many stigmas associated with Crohn’s disease and ulcerative colitis. In fact, according to a Live Science article, IBD is the 6th most stigmatized disease. Some IBD patients are embarrassed to talk about diarrhea and abnormal bowel movements with their doctors, friends and family. In 2000, Katie Couric tackled the stigma surrounding colon cancer, another bowel ailment, by televising her colonoscopy. This allowed people around the country to see that there is no shame in having a bowel disease and that talking about having an invisible illness encourages people to seek medical care. I’d like to find a way to encourage IBD patients around the country to talk about their diseases- tell a friend, a loved one, a coworker, whoever- to show that they are not ashamed and that they will not allow the disease to cause them to feel bad about themselves. I would do this through a public service campaign similar to CCFA’s Escape the Stall and have famous people with Crohn’s and ulcerative colitis, like Shannon Doherty, Ken Baumann, Cynthia McFadden, Mike McCready and others film PSAs that would air nationwide talking about IBD in full details to raise awareness and destigmatize the illnesses.
  • Write a children’s book explaining IBD: More and more children are being diagnosed with inflammatory bowel disease now than ever. As a young child, it’s really hard to grasp the concept of having a disease and coping with the mental and physical effects of the illness. I would like to write a children’s book explaining what IBD is, how it’s treated, what it’s like to live with it, and most importantly, reassure them that IBD does not mean that they have to stop living- they can continue having fun and enjoying their childhood. There are lots of books for children with cancer and other diseases, so I’d really like to write one for children with IBD.

April 5, 2013 at 11:40 am Leave a comment

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The Caged Bird Still Sings

Striving to be content with the life I have been given, instead of the life I had imagined

Brian Greenberg

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