Community Views: Fatigue, Pain, and Accidents, Oh My!

Living with inflammatory bowel disease (IBD) can be painful and messy. So many symptoms can make life challenging. InflammatoryBowelDisease.net has a forum for sharing difficult IBD symptoms and their impact on daily life. In the forum, we asked the community, “What is the number one symptom you wish would just instantly disappear?”

Many members shared their experiences with IBD symptoms. These are some of the symptoms they wish would vanish from their lives:

Fatigue

Fatigue is one of the most common symptoms members mentioned. Fatigue impacts every part of their lives. It makes it difficult to do simple tasks or keep up with activities. Fatigue may create a variety of limitations, including the ability to exercise or socialize.

“It’s the fatigue for me. Nothing worse than being bedridden.”

“My worst thing is I am so tired, and just trying to get normal things around my home is difficult.”

“It’s 100 percent the fatigue for me. I used to run marathons, and now, a mile would wipe me out for a day. The fatigue happens even when I’m not in a flare, and it’s the most frustrating part.”

“My worst symptom is constant fatigue. Something that goes hand in hand with fatigue is insomnia. I am a terminal insomniac and have been for years.”

“Exhaustion, the huge effort needed for even small tasks, can’t be exaggerated.”

Abdominal pain

IBD also comes with a lot of abdominal pain. Members shared how crippling the pain and cramping feels.

“For me, the worst symptom of Crohn’s is the excruciating abdominal pain.”

“The really bad abdominal pain and needing to monitor what I eat all the time.”

“The excruciating pain and excessive bleeding can be so scary.”

“My stomach ALWAYS being swollen and feeling like it just needs to be popped like a balloon because the pressure is so painful.”

“The cramping.”

Unpredictable symptoms

Respondents also shared their frustration at being unable to plan for when symptoms will arise. Leaving the house requires emergency supplies. Knowing the nearest bathroom location is vital. Bowel urgency can occur suddenly, and getting to a toilet fast is critical.

“I think the toughest struggle I have is not knowing when or where my symptoms are going to kick in. I don’t go anywhere without my spare bag and the map in my head that tells me where the nearest bathroom is.”

“Toilet urgency is my worst nightmare.”

“Nothing ruins a day more than feeling like you’re going to vomit and having to constantly run to the bathroom.”

“Urgency. When I gotta go, I GOTTA GO!!!”

“Urgent need for toilet/incontinence. This limits me from going out and causes me social isolation.”

“Fecal incontinence is the worst. Tired of not being able to be free of the bathroom, constantly pooping my pants every single day.”

Other symptoms

Some respondents shared how flares impact systems outside of their digestive system. IBD affects the body in many ways. All parts of the body are interconnected, and living with IBD makes that very apparent!

“When I was in a bad flare, I kept getting what initially felt like pimples inside my nose. They would get worse and worse, and of course, I couldn’t stop picking at them. My GI said to keep them moist – apply something like Vaseline. That definitely helped, but they were just awful!”

“I have post-nasal drip all the time.”

“Definitely fatigue and the impact on my dental health. My dental surgeon is quite used to my problems. But I now need extractions/bridges, etc., until the next Crohn’s/IBD dental moment.”

“Whenever I have a flare, even for just a day, my legs are so painful. It’s not my joints but all over – thighs, calves.”

Join us!

We appreciate all the insight the community shared about the most difficult symptoms of IBD. What symptom(s) would you most like to magically vanish from your life? Join the conversation in the forum and share with us!