It’s a complicated relationship

TW: food restrictions, body image, eating disorder

I should have planned better. Having to restrict a food choice in combination with brain fog equals making mistakes, and last night I made a big one.

Let me back up a little bit here, both for context and to give people who don’t want to read about food restriction and eating disorders time to nope out.

The biggest question I always have is “What can I eat today?”

Crohn’s Disease plays havoc with one’s regular diet. When you first get diagnosed, you will find lists of foods to eat and to avoid, and you also discover quickly that those lists are in no way universal. There’s also endless advice about how Crohnies need to eat a balanced diet, which is a cruel thing to say when many of us, especially people new to the disease, are struggling with figuring out what we can tolerate through particularly awful testing protocols. Namely: eat the thing and hope for the best, with worse case scenario being a painful outcome and best case is that even if it’s tolerable now, it may not stay that way as time goes on.

For example, I used to be able to eat salads. I love salads, I love raw veggies. But after my second resection, my ability to digest leafy greens is gone. Raw veggies that aren’t too fibrous and made up of more water, like cucumbers and peppers usually do okay, thankfully. Tomatoes vary depending on the day, but I’m stubborn and eat them anyway. Leaf lettuce is absolutely a no go. Weirdly, cabbage in all forms is totally fine for now, go figure. There really is no logic sometimes, not that I’m complaining.

I say all this to reinforce the need Crohnies have to establish “safe” foods – ones that we know that even if we’re flaring won’t make things worse. Often, those foods aren’t the healthiest or most nutritious, but they won’t make things in our guts feel worse. Even those can vary from person to person, but generally things like potatoes, rice, pasta, bread, cereal have all been my safe foods.

You see a pattern here, right? All bland white foods, not a lot of varied nutrition but also nothing too disturbing. Eating them with something that might be questionable can also stave off an issue for me, so I lean on them a lot.

A sad history of disordered eating

I’ve always struggled with my body image and subsequently, disordered eating.

I remember, as an eight year old – EIGHT – worrying about my weight and eating diet foods. This was the 70s, and diet culture was in full swing. My house, predominately made up of women, was all in. I ate rice cakes. I ate cabbage soup. I drank the stupid “instant breakfast” mixes. And I heard the kinds of talk about fat that sneak into one’s head and make a toxic little nest.

I also got unbearably hungry and sad and would sneak off to guiltily eat prepackaged cupcakes in the park by my house, where no one could see me do it. Food had already taken on moral values, and weird magical thinking surrounded diet culture and the way I started to interact with food.

By the time I was twelve I was in my ugly duckling phase, but aerobicizing on my own and with the TV fitness gurus, dancing in my basement until exhaustion. By fifteen I was starting to lift weights, which was actually one of the best things I’ve done for my body, but I never ate breakfast and hardly ever much more for lunch than a cookie and a carton of milk. This continued on into college and beyond, where I was actively starving/restricting my food. People didn’t think I was too thin, because I’ve got a curvy build, but I was.

Eventually my desire to control what I eat shifted into other kinds of restrictions, one that had an even bigger moral payoff. I explored vegetarianism, which let me feel ethical and kind while having an excuse to complicate what I ate in a way that reduced choices. It’s not popular for me to point out that some people take this route from a history of disordered eating, but I’ve seen it enough.

Compared to controls, individuals with an eating disorder history were significantly more likely to ever have been vegetarian (52% vs. 12%), to be currently vegetarian (24% vs. 6%), and to be primarily motivated by weight-related reasons (42% vs. 0%). The three recovery status groups (fully recovered, partially recovered, active eating disorder) did not differ significantly in percentiles endorsing a history of vegetarianism or weight-related reasons as primary, but they differed significantly in current vegetarianism (33% of active cases, 13% of partially recovered, 5% of fully recovered). Most perceived that their vegetarianism was related to their eating disorder (68%) and emerged after its onset.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3402905/

I also later, as a much more mature adult, went through a low carb phase where I dropped a significant amount of weight, and success like that did nothing good for my issues. Again, very specific diets of this nature only serve to support issues with disordered eating. Some might think the results are worth it, as I did lose 70 lbs. But actually that just did more damage because the body does not respond well to repeated weight loss and gain. And right before that time period is when my undiagnosed Crohn’s really began to give me issues, so there’s no telling what extra damage I may have added in my ignorance about what was actually happening.

Crohn’s is rough on someone with EDs

I’d gotten to a fairly healthy place in the last couple of years before the Big Bust, as I refer to my bowel perforation. I was eating well, not restricting or overindulging. I’d yo-yoed for a while before I got my shit together and started concentrating on what would make me happy, rather than what I thought I should be doing. Some of that was definitely mental work, because although I’ve worked hard trying to learn to love my body as-is, it’s taken longer for me to love and respect the rest of myself.

I started going to the gym regularly and got a lot of exercise but not excessively so. I was still fat, and I was fine with that. I’ve learned over time that feeling fit – my definition of fit, which is very different from what the patriarchy wants to sell – is more important to me. I felt great about myself, honestly, except for the times that I had gastric issues.

And then I got really sick. I dropped a huge amount of weight while I was in the hospital, and then more once I got out because nothing tasted good and I couldn’t bring myself to eat any of it. I was fighting to get 1000 calories a day and felt like I was wasting away. My skin, hair, and energy levels were all affected, and I looked old and sad when I looked in the mirror. I was scared that nothing would taste appetizing again, and it took a very long time before it did.

I slowly gained back some weight over the next couple of years, and I was good with that and so was my GI. But after the second resection, things changed. Thanks to missing a lot of small intestine and my ilium/ileocecal valve, though I eat and even gain weight, food passes through my system so fast that I don’t get all the nutrition I need from it. I’m basically fat and malnourished, y’all. How messed up is that? Now that I understand that, I’m working to address the underlying causes. [it’s more complex than just my missing valve, but this is the gloss]

Back to the restrictive diet.

In an effort to figure out some of the underlying problems, I’m testing out an elimination of baker’s/brewer’s yeast. This was *not* my idea, but recommended by a professional, so at least I can tell myself that as an attempt to keep disordered eating tendencies out of my head. I’ll be doing this for three weeks, and it’s eliminated a lot of things that I normally rely on as “safe” food: bread and pretzels being the most noticeable. Why pretzels? They use malt, and malt is made with yeast. Boo.

I considered my mental state carefully when I agreed that I’d do this diet. It’s a tricky thing, to balance what can help my guts but also won’t mess with my brains. It’s also taxing to see that shifting from yeasted items to adaptations that my guts will tolerate has caused some slight weight gain. Because that’s what I needed, right? Nothing else has really changed so far during the test. I was hoping for more of a positive response but that’s not been obvious to me. Next week I bring back yeasted items to see if there’s a negative response. Whee.

This requires a lot of tracking on my part, too. I added a tracking app to my phone, which also tweaks at my ED responses, even though I stopped tracking food after the first week. I wanted to make sure I wasn’t going too overboard with added calories from the switch, since right now I live a rather sedentary life compared to how I used to be – thanks, Crohn’s – but once I established that, I dropped it for my mental health.

Of course I’ll report back with the results, once I know what they are. And I’ll reassess what this test did or didn’t do to my disordered eating. I’ll be glad to shift back to regular “safe” foods that don’t make me feel hyper vigilant. But I sure wish that my disease didn’t trigger those feelings in me.

How cruel is it to have a disease that not only makes me miserable all the time but also ties into my food anxieties? Especially when I’m someone who loves all kinds of foods, despite my challenging past with eating and my body. I dream of a day when I can just eat whatever I’d like again without fear of betraying myself.