Posts tagged ‘colon’
Today, May 19, marks the observance of World IBD Day, a day led by patient organizations across four continents to raise awareness and educate the public about inflammatory bowel diseases. Around the world, more than 5 million people live with Crohn’s disease and ulcerative colitis, two debilitating digestive diseases that have detrimental effects on patients physically, emotionally, financially, and more. I know that my blog has been stagnant for months, but I figured today was a great day to return to it.
On World IBD Day last year, I talked about feeling defeated by the lack of progress being made for IBD patients. I was feeling pessimistic after the passing of a young IBD patient and a segment on a major news station that confused IBD with IBS. After a lot of thinking, I decided this year I wanted to be more optimistic.
I just returned from spending four days in Washington, D.C. as part of the IBD Social Circle, the online movement dedicated to bridging communications gaps and inspiring and educating the IBD community. While there, I got to spend time with some incredible IBD activists, like Ally Bain (the girl behind Ally’s Law/Restroom Access Act), Laura of Mangia Paleo, Brian of the Intense Intestines Foundation, Stephanie of The Stolen Colon, and so many more. I also was provided the opportunity to attend Digestive Disease Week, the world’s largest gathering of physicians and researchers in gastroenterology, hepatology, endoscopy, and gastrointestinal surgery. After spending a weekend surrounded by strong, passionate advocates and bloggers talking about Crohn’s disease and ulcerative colitis, I decided that this year’s post would be dedicated to thanks.
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.
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).
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.