Posts tagged ‘ileostomy’
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.
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.
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!
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.
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.
It’s been a few weeks since I did an installation in my ABC’s of Crohn’s & UC series. With other topics arising and Crohn’s & Colitis Awareness Week occurring, it’s fallen off my radar. So here is the next installation, and it will be a short one: J and K.
Jejunoileitis: One of the types of Crohn’s Disease. Jejunoileitis affects the jejunum (see below). Symptoms include cramps after meals, fistulas, diarrhea, and abdominal pain. Kind of sounds like all the other types of Crohn’s.
Jejunum: The upper half of the small intestines.
J-Pouch: One name for an ileo-anal pouch. The J-Pouch is an internal reservoir where the rectum would be. A J-Pouch is traditionally done through a multi-part surgery. The first surgery involves the removal of the large intestines and rectum and the fashioning of the pouch. At the end of the first surgery, the patient is given a temporary ileostomy in order to give the pouch time to heal. After a period of time (typically 6-12 weeks), a second surgery is performed known as the “take down” in which the ileostomy is reversed.
Kidney Stones: One of the most common kidney complications in Crohn’s patients. According to CCFA, kidney stones are common in patients who has Crohn’s in the small intestines because of fat malabsorption. You are at a higher risk for kidney stones if you’ve had a number of bowel resections because you are more prone to dehydration. Symptoms of kidney stones include sharp pain (particularly in your lower back), nausea, vomiting, and blood in the urine. Treatment calls for an increased fluid intake and a diet that is rich in juices and vegetables. If you are unable to pass the kidney stones on your own, you may have to have them removed which is through a simple procedure.
Kock Pouch: A Kock Pouch is an internal pouch formed by the terminal ileum after a colectomy. The pouch has a large volume so that feces can be stored temporarily without the need for a stoma bag. A Kock Pouch may be created if the patient cannot have an ileo-anal pouch or who develop incontinence after an ileo-anal pouch.
Next up in the alphabet series is the letter I. I never thought I’d be saying that when 20 years ago I would run out of the room when the letter I came on during Sesame Street. But I digress.
There are a lot of really important I’s, so read up!