In 2017, Pfizer completed a global ulcerative colitis narrative study to see how people living with ulcerative colitis (UC) are impacted by the disease. They surveyed patients and gastroenterologists (GIs) from 10 countries, over a range of topics, about the day-to-day impact of UC.
I decided to take a closer look at the research and see if my own personal experiences, and experiences of my friends with UC, matched what the results are saying.
I want to draw attention to some particular statistics:
Sixty-four percent of patients reported that their UC controls their life, rather than them controlling their disease.
Sixty-nine percent of patients said they would be a more successful person if they didn’t have UC.
Thirty-four percent of patients wished their GI better understood how UC affects their mental health, but 46 percent don’t feel comfortable talking to their GI about mental health.
Forty percent of GIs said having informed resources to provide their patients would help them improve their relationships with their patients.
I found these stats a little more than disconcerting, and yet, I agree with them. It’s hard to feel in control of a disease that usually has no rhyme or reason for flaring up. Sometimes I have days when I feel great, and other times, I feel horrible. (And those days are usually in the same week.)
UC can cause a life to be lived hour by hour, rather than day by day. Unless you’re close to remission, or know each and every time your UC rears its ugly head, you really aren’t in control of it.
Success with UC
Now, I don’t agree with the statement that someone would be a more successful person if they didn’t have UC. I don’t know what the people questioned in the study considered a “successful person,” but I happen to feel like a successful person despite my UC. I still work, I write, I have relationships, and overall, I’m happy with my life. If someone has UC and they’re too sick to work, I don’t think this makes them any less successful. If someone has UC and a relationship suffers, again, this doesn’t make them less successful. The problem with success is that it looks different for everyone, and you can’t stack up your success and your worth against someone who is healthy, or at a different stage in their disease than you.
People living with UC already deal with the emotional toll of having the disease, and statements about being unsuccessful or not feeling worthy can just make it worse. Sure, I have my days where I feel like a failure, but I do my best to get back to a good headspace.
Mental health: This is a doozy, especially with UC. Like many of the people in the study, I never felt comfortable talking to my GIs about it, either. But that didn’t keep me from seeing a psychiatrist. I knew I wasn’t managing the mental symptoms well, so I sought assistance, because, yeah, my GI doctor is there to treat my gut, not my head.
I brought it up to my GI that I have a lot of anxiety (without my UC), and she suggested I speak with a psychiatrist to manage that. But otherwise, I didn’t expect her to treat my mental health.
Finding resources for UC
I definitely agree that I would have had a much better relationship with some of my previous GI doctors if they had provided me with some resources. When I got diagnosed, I wasn’t given any resources or help. Everything I learned, I did on my own. My GI doctors always told me they didn’t have anything to give me, other than leaflets about the disease in the office.
However, I found Girls With Guts, I found the Crohn’s & Colitis Foundation, and I found HealthCentral, all as a result of my own research. So, there was a bit of an upside there. But for patients who don’t have those resources, or don’t know what to search, how do you see the upsides of UC if your GI isn’t giving you anything other than a pamphlet?
The bottom line
For years, at least since I’ve joined the UC and inflammatory bowel disease community, I’ve noticed a significant gap for patients. Whether in research, in community, in conversation, or in correct information, the gap exists. I think organizations like HealthCentral, Girls With Guts, Intense Intestines, and the Crohn’s & Colitis Foundation are making strides in putting out the correct information and attempting to tackle those gaps.
We’re getting there, but to still see statistics like those presented in the Pfizer study is a little disheartening. My hope in reviewing this research is that the conversation will open up and empower other UC patients, and I hope that other UC patients and GI doctors look at this research and want to change those statistics. I know I certainly do.
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Mandy is a writer and cat mom who is slowly becoming a health-nut. She’s earned both a bachelor’s and master’s degree in professional writing. For her master’s thesis she wrote about patient education materials for those diagnosed with Ulcerative Colitis. She works full-time as a technical writer in Chicago, and serves on the board of directors and blogs for Girls With Guts, a non-profit organization to support women with IBD and/or ostomies. Follow more of her stories on HealthCentral and blog posts on the Girls With Guts website.