Posts tagged ‘indeterminate colitis’
#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.
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.
Losing My Religion
Disclaimer: This post addresses a topic that is sensitive for many people- religion. I want to make sure that people know I am in no way trying to advocate for or against any specific religion or trying to preach to you that your beliefs are wrong. Instead, I am just expressing my frustrations with my current relationship to Judaism.
When I was younger, I used to have nightmares during Yom Kippur.
I was taught in Hebrew School that on this day, G-d decides if you live or die in the next year. I took this so literally when I was young, praying to be inscribed into the book of life, actually afraid that I might die in the coming year.
I grew out of that phase quickly but from it I took a genuine interest and appreciation for religion.
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.
Caring for Crohn's & UC 