Posts tagged ‘Crohn’s Sucks’

#ThisIsIBD

This post originally appeared on the Huffington Post; however the stories included below are the full versions and not the ones that appear externally.

December 1 marks the start of Crohn’s and Colitis Awareness Week, an important week within the inflammatory bowel disease (IBD) community to bring attention to Crohn’s disease and ulcerative colitis (UC), two debilitating digestive diseases that cause crippling abdominal pain, persistent diarrhea, rectal bleeding, and weight loss.

More than 1.4 million Americans live with these diseases, yet most people are unfamiliar with them, thinking that IBD and irritable bowel syndrome are synonymous, or downplaying the symptoms.

“One of the most challenging things is that every patient’s disease is different,” says Rick Geswell, president and CEO of the Crohn’s & Colitis Foundation of America. “We know that what works for one patient, may not work for another. And it’s so unpredictable. Some patients are so sick that they can’t even leave their homes. Others may have mild disease for most of their life and then all of sudden they flare and land in the hospital. That’s why it’s so important for all patients to rally together — especially during awareness week.”

As Geswell says, it’s hard to grasp the reality of living with these diseases. So in order to explain what it’s like have an inflammatory bowel disease, I asked several patients to share their experiences.

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December 1, 2014 at 4:03 pm Leave a comment

CCFA CEO Addresses Hot Button IBD Issues

There are many hot button issues related to inflammatory bowel disease and when I met with Rick Geswell, president and CEO of the Crohn’s and Colitis Foundation of America, I took the opportunity to address two of them- the use of the word “cure” related to ulcerative colitis patients, and mortality associated with these diseases.

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October 28, 2014 at 3:30 pm 1 comment

Microbiome & IBD: The future of treatment?

When I sat down with Rick Geswell, president & CEO of the Crohn’s & Colitis Foundation of America (CCFA) in September, I knew the conversation would focus primarily around CCFA’s Genetics and Microbiome Initiative. I had seen the video that CCFA put out but beyond that, knew very little about the two initiatives and definitely had no idea how microbiota are linked to Crohn’s disease and ulcerative colitis. But what I learned about it is fascinating.

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October 17, 2014 at 2:57 pm 1 comment

Reblog: Ileostomy, colostomy, urostomy: What’s the difference?

My fabulous friend Stephanie at the Stolen Colon is one smart cookie. Her most recent post about the different types of ostomies is so informative that I needed to share it with you all. You can view the original post here or by reading below.

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September 30, 2014 at 8:25 pm Leave a comment

Meet Rick Geswell, CCFA President & CEO

As many of you know, I am a big supporter of the Crohn’s and Colitis Foundation of America (CCFA). I am an alumnus of its Take Steps and Team Challenge programs, sat on the board of its Connecticut Chapter, and I am currently helping its New York City and Fairfield/Westchester Chapters develop communications strategies. I believe that they are the organization that has the most amount of clout in the inflammatory bowel disease (IBD) field and has the ability to create the most change and bring us closer to finding a cure for Crohn’s disease and ulcerative colitis.

I recognize that there is some discontent in the IBD community over how CCFA engages with them. There have definitely been times when I have been unhappy with how they have responded to a certain article, their use of levity about a serious topic (clown shoes in the Escape the Stall campaign), and how slow they are, at times, to jump on the bandwagon with social media campaigns. That being said, with a $70 million budget, they remain the biggest player in the IBD world. Therefore, I believe that, regardless of your personal experiences with CCFA, it is an organization that we all should rely on for the well-being of those with Crohn’s disease and ulcerative colitis.

I was recently given the opportunity to sit down with Rick Geswell, president and chief executive officer of CCFA, to learn more about him, about CCFA and its initiatives, the future of the organization, and the future of IBD treatment. I will be relaying my interview with him over several blog posts in the near future and to start, here is the first in the series- Meet Rick Geswell.

Disclaimer: The details I am reporting below are directly from Rick Geswell of CCFA and do not represent my personal beliefs (although many are aligned). If you want to know if I agree with something, please feel free to ask me in the comments or email me at caringforcrohns@gmail.com.

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September 11, 2014 at 12:06 pm Leave a comment

A conversation about pooping

I know that I have been radio silent on the blog for several months now, and I am sorry for that. Life has gotten very busy and the blog has taken a backseat to everything else. But I am still looking at the comments and am involved with the online IBD community- just to a lesser extent.

Two quick things before I get into this post-

Now onto tonight’s post.

I have an incredible group of friends who all have IBD that I met through Team Challenge last year- Kelly (Crohn’s disease), Laura (Crohn’s disease), and Katie (ulcerative colitis). They all live in Connecticut and I was so sad to leave them last year when Dan and I moved for my job. It’s nights like tonight when I am reminded how much I truly love having them in my life.

Tonight I have been part of a group text message about things that these ladies have done while pooping (at one point, I had 43 unread messages). Summarizing it won’t do it justice, so I am just going to write it out verbatim for your enjoyment.

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June 5, 2014 at 10:21 pm 2 comments

Talking About the Hard Stuff

Today’s post is going to be pretty heavy- I am exploring some of the hard stuff (no not alcohol) that we IBD patients and advocates don’t like to talk about.

Most days, I don’t think about how serious Crohn’s disease and ulcerative colitis can be. I see my husband who, after a few rough years, is living a relatively normal life with little pain. Yes, he still frequents the bathroom and yes he still has cramping but compared to previously, his life has changed for the better.

That’s not the case for many people. This past year has been a rough one for several of my IBD friends. In July, one had her temporary ileostomy made permanent after spending a month in the hospital with uncontrollable inflammation and being under the impression that it was going to be reversed. Another had the last several inches of her colon removed two days after doing a half-marathon and has been struggling with issues at her surgery site. A third has been in and out of the hospital over the past few months with partial blockages.

If you live with a mild to moderate form of IBD, you often aren’t faced with the severity of the disease – in some cases, it can be fatal. This morning, I woke up to find out that a member of one of the IBD Facebook groups I belong to passed away due to complications of her disease. I don’t know the full details of her death but I was told that she had a stricture and trouble breathing, called 9-1-1, and by the time the ambulance arrived, she had passed away. She leaves behind two small children and her husband.

Prior to her death, the only one I had heard of was Jennifer Jaff, who passed away in 2012 from Crohn’s disease complications.

More often than not, IBD patients experience complications from their disease. If not detected and treated early, some of these complications can be extremely harmful and in rare instances, cause death.

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October 19, 2013 at 7:21 pm 4 comments

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

A Baffling Side Effect

We are confused.

In the six and a half years that Dan has been treated for Crohn’s disease, he has lucked out in that, for the most part, he has not experienced any serious side effects from medication. Asacol did nothing to him (in fact, it didn’t even help him). The only other medication he’s been on is 6-MP and that gave him terrible fatigue so severe that he could barely function.

Remicade

For the past 3 years, Dan has getting Remicade infusions every six weeks. He suffers very little side effects from it- in fact, the only thing he feels from it is sleepiness after the infusion caused by Benadryl and a slight headache. These all pass within a few hours to a day of the infusion.

As you know, Remicade can cause a variety of side effects ranging from mild ones like headaches, stomach pain or nausea to serious ones like joint/muscle pain, vision changes and anaphylaxis. Dan’s reaction to the medication, so far, has been on the mild side (knock on wood).

However, for over a year now, we have been baffled by one side effect he’s been experiencing since being on the medication – extreme thirst. Dan is extremely, insatiably thirsty every day. He has some days where when he wakes up, the thirst/dehydration is so bad that he feels nauseous and ill. He drinks constantly throughout the day but nothing seems to help his thirst.

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July 23, 2013 at 11:39 am 3 comments

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

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