Sharing Your Story: The Symptoms and Complications of Ulcerative Colitis

The 2019 IBD In America survey asked 490 people with ulcerative colitis (UC) to answer 95 questions about their life with UC. Nearly 500 people with ulcerative colitis shared everything from specific symptoms to dating to work life and more. As you might expect, the symptoms and complications of UC were top-of-mind for those answering our poll. Here are a few of the results:

What are UC’s most common symptoms?

Respondents were asked “which symptoms have you experienced within in the past month?” and here’s what they had to say:

• 86 percent - Fatigue/low energy
• 80 percent - Urgent need to move bowels
• 76 percent - Abdominal cramps and/or pain
• 67 percent - Joint pain and/or inflammation
• 66 percent - Bloating
• 58 percent - Fullness in the abdomen
• 58 percent - Find it challenging to plan for the future
• 65 percent - Feel others do not understand what they are going through

A substantial minority, 35 percent, of those with UC said they experienced symptoms 20 or more days in the last month, with another 10 percent facing symptoms 15 to 19 days in the past 30 days. Thirty-four percent had 5 or more flares in the past year. Only 13 percent had no symptoms in the prior month.

Which UC symptoms were the hardest to manage?

Among their most recent symptoms, bathroom urgency was named the hardest to manage day-to-day. The top five hardest-to-manage-symptoms were:

• 31 percent - Urgent need to move bowels
• 22 percent - Fatigue/low energy
• 12 percent - Abdominal cramps and/or pain
• 11 percent - Chronic/persistent diarrhea
• 8 percent - Joint pain and/or inflammation

Despite feeling like some symptoms were hard to deal with, more than half, 53 percent, said they perceive their ulcerative colitis to be moderate.

Ulcerative colitis is a pain in the...

Despite pain being listed third among the symptoms most difficult to manage, 31 percent said they felt pain every day, and another 26 percent experienced pain a few times each week. Not surprisingly, the abdomen was by far the most likely place someone with UC experienced pain, at 87 percent.

Back pain, leg or knee pain, and tailbone or buttocks were common too, felt by 40 percent, 40 percent, and 33 percent, respectively.

As if handling UC isn’t enough...

Unfortunately, ulcerative colitis doesn’t stick to its lane and only affect the gut. Its many complications can and do impact the whole body at different times. For those who took the In America poll, the complications most often reported were (in order):

• Anemia
• Arthritis/swollen joints
• Hemorrhoids (a tie with arthritis)
• Malnutrition/nutritional deficiencies
• Ulcers and lesions (mucosal damage)
• Skin rashes
• Eye problems (uveitis, iritis)

A complex disease like ulcerative colitis requires constant management, but don’t forget to leave some room for self-care and fun when you can. Eventually, hopefully, research will give us answers that cure, at least, better control it.

The IBD In America 2019 online survey gathered insights from individuals diagnosed with various types of IBD to better understand their diagnosis and treatment, as well as the impact on their lives. We’re thankful to have each and every one of you as a part of our community!