Hello again! I took a hiatus from this blog for a few reasons; mostly, I was sick of thinking about and writing about my UC. I wanted to focus on more positive, less self-centered things, things that didn’t remind me 24/7 that I have an autoimmune disease that will never go away. And since every meal and snack, and nearly every social situation, takes care of that, it was important I cut out the nonessential reminders. I also wanted to focus on my novel, take some writing workshops, travel, cultivate new friendships…pretty much dive into my “new” normal without looking back. However, next Friday marks the one-year anniversary of the onset of my lovely Ulcerative Colitis symptoms, and with that date looming, I thought it was time to return this site, blog a bit, and then reinvent it, as I’ve reinvented myself. What’s this got to do with diet, you ask?
I invented my own. Well, maybe not so much “invented” as reinvented my digestive health by cherry-picking from many of the popular cult diets to customize one that finally works for me. A bit here, a bit there, and the end result is Frankendiet. Makes sense that if no Irritable Bowel disease is quite the same from person to person that no one diet can cure them all, right? Right. Am I saying this diet has cured my UC or sent it into remission? No. Unfortunately up until the Remicade treatment before last, in early June, I was still seeing symptoms. This past 6-week stretch has been the only one where a few days before the infusion, itsy bitsy symptoms weren’t cropping up, only to be put back to bed after the treatment. I have my fingers crossed that this is the green light that my doc and I can begin stretching doses, and that I can then fine-tune this diet to keep me in remission. Until then.
I think of this diet as the “I-Can-Go-Out-To-Eat” diet because nine times out of ten I can walk into any restaurant – save for a pub or fast food joint – and find at least one or two things on the menu that I can eat, if not more. Farm-to-table establishments and more “foodie” establishments are best because they use fresher ingredients, more natural ingredients, and tend to be lean on sodium and heavy fry and cooking oils. Still, even when the venue is less than ideal, Frankendiet’s enabled me to retain my social life, travel, and not starve when I find myself out of my normal environment and effectively screwed in the nutrients department mandated by the more restrictive, militant diets.
Frankendiet has a few hard and fast rules but is otherwise fairly flexible, depending on how the tummy feels. Mostly it comes down to small meals, limited quantities, and eating many of the same things every day, creating a routine that my tummy comfortably predicts, right down to the time of day it expects to be fed. I’ve been on Remicade since November 2013, but until I figured out my body’s food “rules” about a month ago, I was going 2-3+ times per day, swelling up like a balloon with bloat but not knowing why, etc. Now, so long as I don’t go off the rails, I’m virtually discomfort-free and going once per day like a normal, healthy person!
I eat lots of nuts, including those wonderful gluten-free KIND bars; raw meats and seafood as well as cooked, but only lean red meat; limited raw veggies–really just fresh, chopped basil–as well as some specific, very well-cooked veggies; limited low-sugar fruits; no alcohol save wine; only dark, dark chocolate; full-fat Greek yogurt and hard cheeses; and above all, nothing fried, no gluten and no Xanthan Gum. Sounds like most every other diet out there, right? Well…I still eat sushi with zero side effects, though it contains seaweed and the soy sauce usually contains gluten. I enjoy gluten-free lentil crackers even though that’s a “Paleo” no-no. Grapes give my stomach grief but ironically wine does not. You’re not supposed to have hummus or chickpeas in the SCD diet but every now and then I do, to no ill effect.
The SCD diet works for thousands of people, but it didn’t work for me. For one, I’m still not able to consume raw veggies and the majority of fruit without some serious IBS-like symptoms, and that diet emphasizes veggies. Only recently have I begun doing better with cooked vegetables, but even still, I found this diet too restrictive. My new GI described it as a “religion” and I am not a particularly religious person. Spiritual, yes, but I’m not devoted to one ideology, and one only. A coworker/new friend has been on the Paleo bandwagon for some time, and started sending me recipe links to Danielle Walker’s blog Against All Grain. Without realizing it, I’d asked for and received her cookbook for Christmas, so I already had the tool in hand. I requested it because at the time, I was struggling with my new gluten-free diet. I didn’t realize she was “Paleo.” That aside, her recipes are highly creative and most importantly, DELICIOUS!
Now, having a background in Anthropology, the theory that our bodies can’t process grains drives me crazy. For one, the Middle and Upper Paleolithic period – effectively the Stone Age – was a turning point in early human history because we began eating grain! Neanderthals baked bread and ground wheat using stone tools! I want to smack my head against something hard whenever I hear “Paleo” in relation to the concept of this diet. If you’re truly eating Paleo, then you’re eating grain, because your ancestors were doing it more than 40,000 years ago. It’s not bad for you. However, if you have IBD, Celiac or grain allergies and sensitivities, then yes, it might be a problem for you, and now that’s reason to eliminate it from your diet. What Paleo gets right is low-to-no-sugar and keeping what you eat as balanced, simple and pure as possible, grains or no grains. And don’t get me started on wine. Wine has been around since 6,000 B.C., or for more than 8,000 years. I’m pretty sure we’ve evolved to digest that, too, so unless you really, physically can’t handle it, don’t stress about it.
A doctor once told me that it seems silly that we create all these “rules” around a disease or treatment, and then struggle in giving ourselves permission to “break” them in order to find a solution that works for us as an individual, and one that restores our quality of life–ours, and no one else’s version of what a healthy, happy life should be. It’s taken me almost a year, and it’s been a food-and-bathroom roller coaster, but Frankendiet has come together and in doing so, has given this UC gal a new, healthier lease on her thirties. Hopefully some part of this diatribe is useful to you, or someone you know, especially if they are feeling pressure to adhere to a diet they’re less than thrilled with, or are unable to commit to, for one reason or another. Til next time!
George Saunders once wrote, “There comes that phase in life when, tired of losing, you decide to stop losing, then continue losing. Then you decide to really stop losing, and continue losing. The losing goes on and on so long you begin to watch with curiosity, wondering how low you can go.” This may be a huge presumption, but a lot of people dealing with IBD (and other diseases) feel that way. You go there, leave it briefly, and return. I’m there now, booted back into the spin cycle because the odometer turned over. Another year older, another new problem, and no relief in sight. Another reason to wallow and wonder what’s the point of all this? My get-me-to-remission-already journey has been disgusting, edifying, discouraging, inspiring. Now it’s, like Saunders wrote, kinda fascinating. How far off the tracks can you derail? If life is what happens while you’re making plans, what happens when you’re just trying to make it back to your life? What’s the meaning of all this, anyway? We were put here to develop Ulcerative Colitis and…?
My title is a little sensational, perhaps a little grandiose, but I’m trying to make a point–small things make a difference. What might seem stupid and insignificant to someone else could have a significant impact on you, or vice versa. A ripple effect, if you will. Several months ago, on the Great Bowel Movement’s “Flush My Secret” page, I came across a post by someone who said since being diagnosed, they “despise wearing thongs.” I used to feel the same way about a lot of different types of apparel, so their sentiment resonated with me. I empathized. But a few months in, as the blank page of my future life began to resemble one of those paper snowflake cut-outs, I realized I had to stop resenting, stop imposing limitations, and most importantly, stop eliminating all of the joys–if you can call thongs a “joy”–in my life. (And nothing against the person who posted that. Everyone is entitled to feel what they feel, when they’re feeling it. Rock on sans thong!)
That being said, there a ton of things I miss that I can’t get back. At least not right now. I miss gourmet flatbreads. I can’t find a restaurant that offers gluten-free flatbreads. (If you can offer gluten-free pasta why can’t you bake a gluten-free flatbread?!) I miss my elderflower martini like crazy. I miss having unlimited options on a restaurant menu. I miss the bread basket. I miss being able to meet up with people at places like Starbucks because there’s next to nothing I can eat or drink there, unless it’s water. I miss normal birthday cakes. I miss barely knowing what the inside of my doctors’ offices looked like, save for once a year. I miss having a near-empty medicine cabinet. I miss my hair, which is thinning thanks to the meds. I miss a clear complexion for that matter. I miss my energy level, which while not as low as it used to be, drains down a lot faster these days. I miss my money–copays, prescriptions and gluten-free eating are expensive. I miss doing crunches (and I never thought I’d say that)! I miss the days when I didn’t have to crap at work, and I miss when it didn’t smell (or be loud) and embarrass me! I miss not ever having to think about my guts or my poops unless I got a GI bug. I miss having “problems” that were actually just inconveniences and not actually serious. I miss the life that I didn’t appreciate when I had it. I miss being normal.
I was missing normalcy a lot worse when Victoria’s Secret’s semi-annual sale rolled around after the holidays. See, I’m the type that can only take being backed into a corner for so long. And, life with UC is a roller coaster, and personally, I hate roller coasters. So I did what any glum gal does, I went shopping. With that “Flush My Secret” post in the back of my mind, I deliberately bought frilly, exciting, frivolous underwear. It goes against all common bowel disorder logic. I spent money on something nice that could be ruined? You bet. (And duh, I waited for a sale.) Call it one of those “superficial interventions,” call it reclaiming one of the dozens upon dozens of mundane aspects of my life that I thought I’d relinquished forever. Or, call it taking back a little control. Whatever you call it, this small act empowered me, and had a cascade effect. I began doing that P90X workout despite some increased discomfort. After a few sessions my abs strengthened and whaddaya know? The cramps stopped. I began enjoying wine without the guilt, since wine doesn’t exacerbate my symptoms. Guilt (and anxiety and worry) do. I even started experimenting more with food. The other day a coworker handed me an Italian candy from his trip. I unwrapped and took a small bite. My other coworker, sitting next to me, gasped and said, “But how do you know that’s gluten-free?” I looked right at her with slyly narrowed eyes. “I don’t,” I replied, “But I’ll know shortly.” I felt like a daredevil. (In ten minutes I was a bloated daredevil–the candy didn’t agree. Surprise, surprise.)
I began exploring alternative treatments and started acupuncture, something that surprised my husband. He lauded my courage initially, saying he’d probably never do it, but now he goes, too. I signed up for a writer’s workshop. Normally I’m too drained after a long day of work to give much in the way of oral feedback, but I’m there at least, out in society again, focusing on something I love. And, I’m even planning a vacation. A real one that involves airplanes and tropical beaches. I’m not in remission, but I’m not waiting around anymore. Life is passing me by, and me sitting on the sidelines, anxious and stressed, fretting about my next meal, my next bowel movement, my next however many years, is doing more harm than good. Without happy distractions, it’s too easy to get caught up in the what-ifs and the poor-mes. Like a lot of people, I’m a worrier by nature. And like a lot of UC sufferers, I need to get out of my own head if this stupid flare is ever going to calm down. So my point? Find a positive distraction, let it empower you, let that snowball. And, do it in some sexy underwear. You’re worth it.
The article “Taming the Inflammation of Ulcerative Colitis” provides a good overall definition of clinical remission: it “is defined as formed bowel movements, no urgency and no blood in the stool.” I’m not quite there myself, but I believe I’m finally starting to enter it. I don’t know if it’s thanks to the Remicade, the Imuran, or both, but I can honestly say it’s not due to diet. (At least, not fully). Continue reading
I’m sitting here finishing my coffee (yep that’s right – though I cut back I never gave it up entirely) and perusing the Black Friday specials…which actually aren’t all that special. Williams Sonoma went so “crazy” that they’re offering – wait for it – FREE SHIPPING! Also their peppermint bark is on sale. (Don’t go breaking your index finger clicking to their site, okay?) Banana Republic keeps offering 40% off full-priced purchases even though that’s all they’ve been offering for 8 days and they offer it every Wednesday anyway.
Needless to say, I’m bored, and my credit card isn’t coming out of my wallet any time soon. So I started clicking around the non-retail segment of the web and here’s something novel: a fresh post on IHaveUC.com regarding the Top 10 Most Popular Ulcerative Colitis Gift Ideas. Continue reading
I was perusing The Great Bowel Movement “Flush My Secret” page and stumbled across the above image with its “Remission” caption: “Remission is being somewhere familiar and realizing you don’t know where the bathroom is.” Now that’s a moment I’m looking forward to.