With the recent diagnosis of Ulcerative Colitis for Georges St. Pierre, my heart goes out for not only him but all newly diagnoses patients and those just beginning to navigate the new world of IBD. It’s proof that IBD strikes those even in peak physical condition and no individual is safe from their own bodies attacking them, which is a really frightening thought.
I then began to read some of the articles published about the UFC update and it became really enlightening as to how many misconceptions there are about IBD and ulcerative colitis. Language like “he came down with colitis,” and “he’ll be out for a minute,” was being used which initially infuriated me. It got even worse when these reports tried to explain (briefly) in laymen’s terms what colitis was, using phrases like “disease of the colon,” “causes minor inflammations,” or, “can cause intestinal damage.” But I also recognize that I have this tiny platform that I may be able to use to correct some of these misconceptions and hopefully redirect some of this inappropriate rhetoric in our community.
- Misconception # 1: UC is a digestive disease: UC is an autoimmune disease. Plain and simple. The body’s immune system attacks the colon and causes inflammation, ulcers and bleeding. Don’t take out your anger on the poor digestive tract; it’s not his fault. He’s the one under attack. The disease is systemic and for some reason the body’s immune system is in overdrive and mistakenly goes on the offence against the lining of the large intestine.
- Misconception # 2: UC is caused by stress; hereditary; poor diet; lifestyle choices…. etc. There is no known cause for UC, Crohn’s or IBD. Physicians, and researchers don’t know exactly why some people develop UC and some people don’t. They have theories about environmental and genetic reasons but they are just theories. The misconception here is because most people with IBD can pinpoint triggers to their FLARES (for me I can pretty confidently say there is a very strong correlation between every major flare I’ve had and stress) but even that is not proven. And you absolutely don’t “come down with it” as if you’ve caught it from the subway.
- Misconception # 3: You can treat your UC with diet, (paleo, organic, vegetarian, FODMAP, gluten free, vegan, sugar free), or even better, yoga, more sleep, drinking more water, exercise, quitting your job, “WHATEVER”. Of course there is a very strong connection between living a nourishing lifestyle and your over all health. There is a definite relationship between your systemic, digestive and even mental health as well as the environment we live in and the things we consume. Yes, I whole heartedly believe that. BUT what you eat will not cure a flare up.Even the healthiest of people can still fall victim to IBD. 1.) this is because of misconception # 1: IBD is systemic, and not a digestive disease but also 2.) The problem is a very high increase in inflammation within the digestive tract, not our body’s functional ability to digest the floods. The misconception here is because certain foods are harder to digest when the colon is inflamed and damaged. Foods like raw vegetables, fruits, nuts, seed, etc. and then things that are refined and processed have a hard time breaking down when the colon is so sick and may tend to go through us faster. Foods high in starch like potatoes, rice, oatmeal and then foods like soups, applesauce, and crackers….they just go through us easier, slower, or may even bulk things up. That’s why people think foods make colitis better or worse, but as far as I’m concerned (and my experience trying the gluten free, sugar free, egg free, dairy free diets) the colitis makes the digestive process better or worse. if your immune system wants to attack….it’s going to attack.
- Misconception # 4: It’s like Crohn’s but not as bad I personally have heard this said time and time again and I also use something along the lines of, “Do you know what Crohn’s is? Yes? It’s like that,” when explaining to people what UC is. And I am also very sensitive to the fact that I know a lot of people with Crohn’s have complications and prognoses far worse than I have ever had. For the most part, Crohn’s is and can be much worse than UC. It affects the entire digestive tract rather than just the colon, it can affect sporadic location in the digestive system where as UC typically starts at the bottom and works it’s way up, people with Crohn’s usually aren’t eligible for a JPouch, and from my understanding people with Crohn’s often experience a lot more scarring and strictures. Trust me, I have all admiration for people with Crohn’s because you are fighters. I know that.
But what people don’t understand is that UC CAN become that bad. There are people living with Crohn’s completely in control and in remission. But once in a while people with UC see a flare up that gets away from them. It CAN be totally debilitating. There CAN be hospitalizations, complications and surgeries involved. It can make us very very ill. It CAN be emergent or life threatening. And for me, this was the case. I was not just “out for a minute.”
- Miconception # 5: People with UC only get it once. IT. IS. CHRONIC! I remember being in teachers college crying to a professor because I was in a pretty bad flare (thank you B.Ed stress) and I was worried about how I was supposed to get through placement when she said, “Oh ya I had ulcerative colitis once when I was younger,” And for someone who was fairly new to the IBD game it totally confused me why she didn’t say, “ I have that too.” But let me be clear, you never get rid of UC and it will never go away. Unless you somehow get a new immune system, UC sticks with ya. It’s a series of remission and flare ups. And if you’re lucky enough to achieve remission for an extended period of time, power to you. But you still got it. It’s still in ya.
- Misconception # 6: There’s a cure for UC “You can’t have UC if you don’t have a colon,” is what a GI once said to me. He was pitching the idea of surgery to me and said that surgery is a cure because the word “colitis” means inflammation of the bowl. And you can’t have inflammation of the bowel when there is no bowel. But that’s just semantics. I have a JPouch now but I wouldn’t in any way consider myself cured. If going to the bathroom 8-10 times a day is cured, then I’m pissed, but I don’t think that’s correct. I also experience chronic fatigue, chronic dehydration, inflammation in my hands and excessive canker sores. But sure, “I’m cured”.
- Misconception # 7: IBD and IBS are the same, or at least similar. NOPE they’re different. Someone again once asked me what ulcerative colitis was and a friend responded for me by saying, “It’s like IBS but worse.” Irritable Bowel Syndrome IS a digestive condition. It IS affected by diet. And it IS fairly common. In no way am I discounting the struggle people go through with IBS because the two illness both have similar symptoms and I know how difficult managing those symptoms can be. But the key difference is that IBS does NOT cause inflammation. They’re different
- Misconception # 8: Someone with UC just has a lot of diarrhea. Sure, running to the washroom 20+ times a day is considered a lot. But there’s so much more to the story. In the very basic sense, when I say diarrhea the misconception here is that it’s diarrhea. In the middle of a flare, a lot of the time it’s actually blood, and mucus that’s coming out. I usually describe it as just pissing blood out of my ass (see where the inflammation comes in?). And then from there that’s where all the other scary ailments come in like severe anemia, fatigue, poor nutrition, incontinence, low blood pressure, high heart rate, nausea, painful cramping, extreme weight loss, infections, and fever. So no, someone with colitis doesn’t just go to the washroom a lot.
- Misconception # 9: Someone with UC has poor quality of life. During a flare up, depending on the severity, UC can absolutely effect someone’s quality of life. But for the most part, we live a very happy, fulfilling and meaningful life. If anything, people with UC appreciate those moments of socialization, intimacy, productivity and health with even more gratitude than a lot of people. We generate humor and positivity as much as we can because we know how shitty the universe can be. And I hope, most of us try to display empathy and kindness for others because we know the adversity life can throw at us. We carry that baggage in strides and try to lend a free hand to help carry the load of others….when possible.