Though this isn’t specifically related to veganism or femme identity or queerness, it is directly related to this queer vegan femme and it’s important. This is the very first Crohn’s & Colitis Awareness Week. I know there are all kinds of “awareness” days and weeks for ailments that really don’t need it (I mean really, who isn’t aware of breast cancer at this point?), but IBD really does need more attention brought to it. A lot of people don’t know much about it beyond the more humiliating facts. Yes, it affects the GI tract and can cause diarrhea and/or frequent bowel movements. There is often pretty severe weight loss, awful abdominal pain, extreme fatigue and a host of other unpleasant symptoms. It is not a pretty disease. It’s not nice to talk about. But I do it. I never asked for this stupid disease and I refuse to be shamed by it. And I do my best to educate people about it.
Crohn’s disease and ulcerative colitis (UC) are collectively known as IBD. Far too much is still unknown about IBD. Researchers still don’t know a definitive cause. It’s thought to be autoimmune but there’s still argument over whether it’s genetics or environment that cause it. Most say both. (No one else in my family has IBD though my father’s sister has lupus and my sister has RA.) Basically, the immune system goes haywire and starts attacking things it shouldn’t in the gut, like normal bacteria or foreign proteins. Once it turns on, it can’t shut itself off. The body keeps throwing white blood cells at the area where it thinks there’s an intruder, causing chronic inflammation and eventually ulceration and erosion of the intestines. (In UC it only affects the innermost lining but in Crohn’s the erosions can go full thickness. Another difference is that disease is limited to the colon in UC but in Crohn’s disease, it can go anywhere it wants along the GI tract, though it tends to stay in the ileum and colon.)
IBD is frequently an invisible illness. Even when my disease is actively flaring, I don’t usually “look sick” (especially because I have never had the major weight loss that some patients do). It’s difficult for me to get people to understand just how exhausted I am when my Crohn’s is flaring and that’s in addition to the stabbing pain in my gut and the frequent trips to the bathroom that result in (sometimes excessive) bleeding. It’s hard to stomach comments like “Well I bet that’s a good way to lose weight!” as I choke down a meal from the BRAT diet (bananas, rice, applesauce, toast) in a desperate attempt to stave off a worsening flare.
A lot of people wrongly interchange IBD with IBS and therefore think that I can control my disease through diet and stress reduction alone. Don’t get me wrong, those two things help but they don’t help everyone with IBD and they are usually not enough. Unlike IBS, Crohn’s and UC cause permanent damage to the bowel, sometimes necessitating bowel resection surgery. There are also frequently extra-intestinal symptoms, arthritis being a common one (I and nearly every other IBD patient I know has suffered from it during one flare or another).
The medications available for management of IBD suck, there’s no other way to put it. There aren’t enough options and the ones we have come with some pretty major side effects. For example, the one I’m on now is one of the “safest” and it carries a risk of lymphoma. Nice, right? Lots of other medications completely destroy the immune system leaving the patient at risk for lots of opportunistic infections. And what’s worse is that we put up with these awful risks and side effects (do not even get me started on Prednisone) to achieve only a decent management of the disease. Since my initial acute flare that landed me in the emergency room with a fever of 104 F, I’ve had at least 3 other milder flares. So is my medication managing it? I guess but not so well that I don’t always fear a relapse is around the corner at any moment.
There is no cure for Crohn’s disease or ulcerative colitis. I don’t expect there to be one in my lifetime. I’m honestly more concerned with just finding safer, more effective medications to manage the disease. But that can’t happen without better research. There are some exciting new studies being done and I am putting a lot of my hope with stem cell research (there’s currently such a study underway in IL).
To learn more about Crohn’s disease and ulcerative colitis, you can visit the Crohn’s and Colitis Foundation of America.