I know what you’re thinking: you’ve read many, many articles with a similar title. The truth is, not only are there so many misconceptions about life with ulcerative colitis, but there are also new myths that pop up as the UC community expands, science advances, and knowledge spreads a wider net. I was diagnosed in 2001 at the young age of 14 years old, and I still uncover new assumptions that people – including myself – make about UC.
That’s not to say there isn’t some truth to these assumptions; there’s always a little bit. But misconceptions are built on assumptions, which are usually built on stereotypes around UC. It’s a bathroom disease. You just have stomach pain all the time. You lose weight uncontrollably. You can’t eat bread. You can’t eat salad. You can’t eat dairy. While those are true for some people, they aren’t the reality for everyone … which makes them a misconception that people often apply to an entire community.
So let’s bust some of the newer ones I’ve heard, addressed, and researched myself:
1. You have to skip gluten if you live with UC.
I’m not a doctor. I’m not a nutritionist. But I am a person who lives with UC and eats gluten pretty much daily. Is gluten-filled bread and baked goods my main source of nutrition? Absolutely not. Is it something I keep an eye on? Sure thing. But it’s also not something that causes any noticeable side effects for me and I consider myself lucky. Gluten is widely known as a common allergy for many people, especially those living with Celiac disease, but it isn’t an absolute with UC. Talk to your doctor about the best diet for you, and keep a food log to see if you notice any patterns.
2. You can’t leave the house during a flare.
As a blanket statement about UC flares, this is false for a few reasons. First, every flare is different! Some are intense and do feel more manageable at home. Others are moderate, and you are able to leave for short outings. Others don’t include symptoms that require immediate bathroom access; many of my friends who flare with stomach pain over diarrhea go out every single day without a second thought. Flares are something that can be medically identified during a colonoscopy or other tests. Experiencing UC symptoms doesn’t always mean a medical-grade flare is happening. If you’re newly diagnosed and worried that leaving the house may be off limits when you’re feeling ill, talk to your doctor about what’s realistic in terms of energy and output when you’re flaring. Small outings got me through my worst flare.
3. UC is basically the same as Crohn’s.
This isn’t a new misconception, but it’s one that pops up in different forms. For the sake of explaining inflammatory bowel disease with ease, it’s my experience that more people know of Crohn’s over UC. For that reason, I do make the comparison to help them get a basic understanding. However, UC and Crohn’s are completely different diseases that fall within the IBD family. They present differently during colonoscopies, they have varying symptoms, and they’re impacted differently by surgeries and medications. If you’re curious about the true differentiators, ask your gastroenterologist. Also, this article is a good starting point.
4. No one will love you with UC.
My fellow UC warriors, I believed this (and honestly, some days I still do) for a very long time based on some negative comments from an almost mother-in-law. It’s fueled by the mentality that you’ll “always be sick,” but I don’t like that descriptor. You’ll always live with a chronic illness, but that doesn’t mean you’ll always be sick. And if “always being sick” is something that does resonate with you, you’re still absolutely deserving of love and respect from a person or people that aren’t afraid to hold your hand through it. If there’s one myth I want to kick to the curb before the rest, it’s this one.
5. The main symptom is diarrhea.
Similar to flares appearing differently each time, a person’s symptoms vary depending on severity, location, and other bodily factors. Similarly, one person’s symptoms may not be the same as another person’s. I have a friend whose flares present as bloating and severe stomach pain. My flares present with bloody diarrhea and loss of appetite. We both live with UC (we even see the same doctor). Is diarrhea a common symptom? Of course. Is it the main or only symptom to know? Not even close. When talking about your experience with UC, don’t be afraid to name the other things you feel – stomach pain, bloating, weight loss, loss of appetite, comorbidities, etc. It’s all worthy of being understood.
6. You can cure UC.
I’ve lost count of the number of friends who have told me they “cured” their IBD through diet, eliminating a certain medication, a surgery, or some other way. Their marker for being “cured” isn’t a colonoscopy or other test; it’s simply that they’re symptom-free. I always want to caution those friends to remember that being symptom-free and in remission is always the goal, but it doesn’t mean that UC is cured. In my experience, this sort of mentality encourages complacency in ongoing disease management, which can cause another flare. Managing UC is a lifelong journey. Some people may be lucky enough to live symptom-free their entire lives with little to no management. Others may have to change treatment plans every few years to stay in remission. Everyone is different, but the only thing we all have in common is the necessity to manage our condition with the right care team and treatment plan.
I was diagnosed with ulcerative colitis when I was 14 years old. Since then I’ve had two major flareups but have spent the majority of my time in remission. In July 2020, I made the great-for-me choice of going on anti-depressants, which has changed my life. My passion in life is to remove all stigmas around invisible illnesses and to empower patients to advocate for themselves and not live in any sort of victim mentality regarding their bodies and illnesses. They are part of who you are, not all of who you are. In my free time I enjoy spending time with my husband and friends, swimming, working out, reading and exploring new coffee shops. I’m also the new group leader for the Crohn’s and Colitis Support group here! I'm exploring that sober life too, one day at a time. 7/5/2020
caitlyn_smith