From the Community: Experiencing Crohn’s Flare-Ups
Living with Crohn’s disease inevitably involves flares. These are times when inflammation increases and symptoms worsen. It is uncomfortable, painful, and draining. To better understand Crohn’s flares, we recently asked the Facebook community, "How would you best describe what a Crohn’s flare feels like to you?"
You shared many insights into your reality during a Crohn’s flare.
Crohn's flares: a literal pain in the butt
During a flare, you spend a lot of time in the bathroom. Many responses highlight the impact of constantly voiding the bowels. It is a source of significant pain and irritation. Expelling something from the anus upwards of 20 times a day happens for many of you.
"After so many trips to the bathroom, the bleeding starts, and your bottom is sore and inflamed.""Endless sprints to the bathroom, watery diarrhea upwards of 25× per day. A fever, blood, and a very sore bottom.""The toilet paper feels like a cheese grater or barbed wire when you use it."
What does Crohn's pain feel like?
A symptom many shared is severe cramping and pain in the abdomen. One memorable quote: "It’s like someone is twisting your guts in a knot!"
Inflammation of the intestine often results in cramping, particularly during a flare. Over 50 percent of adults have abdominal pain during a Crohn’s flare.1 The descriptions you used were very vivid!
"Like wadded up barbed wire stuck throughout your intestines, while every joint in your body hurts coupled with extreme fatigue.""It feels like your intestines are in a meat grinder, and your anus is being ripped inside out.""Like my intestines are trying to digest broken glass whilst I’m being beaten with a baseball bat.""Razor blades on the left side of my colon."
Fear of eating and drinking
Enduring so much pain in the gut and rectum, several of you mentioned the growing fear of eating and drinking during a flare. It is common for those with Crohn’s to develop an aversion to eating and drinking.2 The pain and discomfort of expelling what you take in can make eating unappealing.
"It gets to the point where, if you put it in your mouth, you know it’s coming out the other end. You don’t eat; you don’t drink, even water, because nothing stays in you.""Fear of eating and drinking as it makes me have to go to the bathroom."
Labor and delivery
Many women described the experience of a flare as being worse than the pain of childbirth.
"If you've had a baby naturally, that × 10.""Like giving birth every time I go to the bathroom.""I feel like my whole life is like a permanent pregnancy, from the cravings, to smell and texture aversions, to the intense cramping and pulsing pain."
Thank you, Crohn's community
We appreciate learning and hearing from each of you! Thank you for sharing your experience of Crohn’s flares so openly with the IBD community.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?