Tag Archives: crohn’s

Crohn’s & Colitis Awareness Week


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.

Living Your Ideals

 

I am vegan. This is one of my truths that took quite a while to discover. I wish I could say that it was ethics that brought me to my awakening, but it wasn’t, at least not initially. I was vegetarian for about 8 years and I was the kind of vegetarian who thought vegans were “extreme”. I was also guilty of using the shameful “But I love cheese too much!” excuse to resist going vegan. But in 2007, while struggling with my Crohn’s disease, I decided to see a naturopath (my experiences with natural medicine will most likely fill another blog post entirely) who urged me to remove dairy from my diet. I balked at first. My beloved cheese! However, I now had an actual medical reason to go dairy-free. Since it was dairy all along that had stopped me from going vegan, I decided it was finally time…eggs, honey and gelatin went too. Though I got nothing else out of my visits with the naturopath, I will admit that she was right about one thing: going vegan improved my health. I was able to much more easily manage my Crohn’s disease with a dairy-free diet. I am also living proof that you can have IBD and be a vegan (obviously, IBD affects everyone differently, though, and I recognize that).

In addition to feeling better physically, I felt more at peace. For so long, I had lived with such a cognitive disconnect, professing to love animals while still participating in and supporting the system that tortures and exploits them. I began to learn more about the horrors of the dairy industry and the ridiculous myth of “humane” meat and eggs. Slowly, I began to transition my wardrobe and makeup to vegan items. I won’t lie, it wasn’t easy at first. You don’t realize just how much we use animals until you start to rid your life of the cruelty we impose on them. Initially, winter items were the most difficult for me. Having just moved from Virginia, I was facing my first Chicago winter and I was terrified. I learned to layer and amassed a collection of fleece socks and cotton scarves and hats. I even found a super warm (albeit ugly) parka from Land’s End for the most bitter days. Shoes were also a bit tough at first, until I figured out where to look and what to look for. Now I can zero in on a hot pair of vegan heels in a second. (Tip: There are so many vegan options on Endless and DSW; just check in the under $50-60 price range. Also, Madden Girl is almost always vegan. Same goes for Michael Antonio and Two Lips, just watch out for the suede.)

It does take a bit more time and planning to be vegan but it’s easy once you get the hang of it. I know that there are certain things I can only get at Whole Foods or Trader Joe’s so I make a list and once there’s enough on it, I’ll make one big trip. I buy in bulk a lot. I stock up. This goes for makeup too. As a femme and performer, that’s one area that can still be pretty tough, but it’s getting easier, thanks to sites like Cruelty Free Face and companies like Urban Decay and Sugarpill Cosmetics who clearly label which of their products are vegan. I wait for sales (Sugarpill has them often!) and then stock up on colors. Costuming is definitely more difficult for me than for my non-vegan dance sisters, as tribal belly dance accessories are frequently adorned with feathers or shells and belts are often leather. This, of course, is where craftiness comes in. It also helps decrease procrastination. I don’t have the luxury of leaving costuming to the last minute because there are often items that require special ordering. I can’t run to Walgreen’s right before a show and grab some lipstick to go with my color scheme. This is far from a big deal.

I do not lead a life of sacrifices. I eat a more nutritious and varied diet now than I ever did before going vegan. I actually like cooking now! I’m not deprived or malnourished or humorless. As a queer feminist, the life I live is fully aligned with my ethics. I fight for those who are oppressed and exploited, human and non-human alike. And I look damn fierce doing it, too.

(L.O.V.E., which stands for Living Opposed to Violence and Exploitation, has some really great resources for going vegan. Check them out!)