From Our Health Leaders: Most Despised Symptoms of UC or Crohn's
Last updated: February 2023
We know that symptoms are frustrating and have a huge impact on everyday life when living with IBD. To shed some light on this, we asked our health leaders, "What symptom do you experience most often with IBD? And what symptom do you despise the most?"
Worst symptoms of IBD
"Since my bowel resection surgery in August 2015, I have been able to stay out of the hospital and stay in 'remission.' I use quotes around remission because to me, you're never truly out of the woods. Remission does not mean every day is perfect and symptom-free. To me, it means the majority of my days I feel well.
Currently, I'm pregnant with my second child (due in January) and chasing around a toddler all day. Fatigue is something that's always been a major symptom for me with my IBD, so that coupled with pregnancy and being a mom is a triple whammy at times. I despise the gnawing pains in my stomach that cause me to be fearful of what could be brewing and the days when I feel tied down to the toilet."
"My most frequent symptoms are nausea, fatigue, fissures, loss in appetite, and before surgery, it was rapid weight loss. I think fatigue is the symptom I hate the most. I can take something for nausea and pain. The fissures will heal. I can take something to help me get my appetite back. But the fatigue . . . oh my goodness, my life would do a 180 if I didn’t feel like I was walking around carrying an elephant on my back.
Having fatigue and not being able to sleep properly is probably the worst thing. You just feel like you’re in a never-ending marathon. I also wish that people understood that fatigue cannot be healed by getting sleep. Being sleepy and having fatigue is not the same thing."
"Since I became symptomatic (which was several years before finally being diagnosed with Crohn's disease), the abdominal pain and frequent, urgent diarrhea have been my most frequent and despised symptoms of IBD. While I have experienced a whole host of other symptoms (intestinal and extra-intestinal alike), the pain and diarrhea usually stop me in my tracks. They make working very difficult, and everything else in my life has to take a back seat.
With these symptoms, I honestly try not to leave my house much because it's not worth the stress it causes. I also don't sleep well when these symptoms are bad, and I face frustration, struggle with my anxiety, and frequently worry that a flare could be right around the corner."
"The GI symptoms are a given with IBD, and I can deal with those more so than some of the others at this point. The one symptom I struggle with the most, even during extreme periods of great health, is the insane fatigue. It’s an annoying invisible symptom of this invisible illness.
My extra-intestinal manifestation of joint pain leading to the inability to walk, sit, or stand without pain is actually the symptom I despise the most. I miss running and all of the benefits it brought."
"Besides fatigue, and dealing with autoimmune arthritis, the 'normal' amount of pain that we go through on a daily basis is so difficult. And on the outside, no one would be able to tell what the hell we're experiencing on the inside. They wouldn't be able to tell that our guts on are fire and that we need to lay still in the fetal position. It's hell.
It's obstructions that then turn into visible illnesses quickly when we have NG tubes in our nose. Or TPN going into our arms while being medicated many times a week at a clinic in order to get the proper amount of fluids in our bodies from losing so much from infections.
It's nausea that the IBD causes that I'm unable to control in a flare. This results in having to get a PICC line and maybe even a port, which turns my disease 'visible' again. It's blisters in my nasal canal and ulcers in my mouth and the number of antivirals I have to take to control my body temperature and virus."
"Fatigue is easily my most frequent and frustrating symptom. It’s like no matter what I do, I’m always exhausted. Even little things that I used to take for granted, like showering, completely wipe me out. I might get lucky and have a few good days here and there, but soon enough I know I’ll hit a brick wall and be back to square one."
"The most common symptom is frequent trips to the bathroom and urgency. I get horrible spasms in my rectum and sometimes I have to stop to let the spasms pass. I despise this so much because it can be painful. A lot of times it is just a buildup of air that is in scar tissues. I hate this. Oftentimes I have to lay on the ground to pass gas, just so the pain will go away."
In your opinion, what is the worst symptom of Crohn's disease or ulcerative colitis?
Does living with IBD impact you financially?