When I first started blogging I thought I would have a whole section about food and my diet as someone with IBD and an ostomy. And that is probably one of the most commonly asked questions I receive from readers or generally anyone. But in the 3 years since I first got really ill I haven’t once been able to specifically write about it, because there is no simple answer. My relationship with food is so complex and overwhelming that I haven’t quite been able to articulate, let alone practice what a healthy diet looks like. Until now.
I thought I would first explain why someone with IBD or an ostomy (at least in my own personal experience) has such a difficult relationship with food and why it’s so difficult to explain:
Living a healthy lifestyle of nourishing foods and a balanced diet is for the most part a simple concept: limited fat, sugar and processed foods, a lot of fruit and vegetables, protein rich items especially in nuts and seeds, high fiber, low sodium, etc. Common sense right?
Except for someone with a sick digestive tract, that diet is thrown upside down. Those foods rich in nutrients, are harder to digest and break down whereas starchy, plain foods like potatoes and breads are the easiest. High fiber foods travel quicker through someone who’s colon isn’t absorbing nutrients effectively. And when you already have diarrhea 20 times a day, the last thing you need is an added cause to be running to the washroom. I specifically remember missing class in university simply because I ate a salad for dinner.
And then when I had an ostomy, I’d run the risk of a blockage. Those raw vegetables, fruits, nuts and seeds actually became dangerous if I didn’t chew them thoroughly because they could potentially cause an obstruction (and in the case of “the bad surgery”, they did). In addition, once you don’t have a colon, responsible for water retention, your body actually needs that increased sodium and potassium to avoid dehydration. Hence why my dietician was ordering Lays plain potato chips to my room at EVERY meal.
So then everything I had ever been taught was thrown out the window and I was left to navigate how to have a healthy diet living on oatmeal and marshmallows. Without proper nutrition your body feels even sicker, weaker, more tired and sluggish. My body was already pissing blood 20 times a day without the added lack of iron and nutrients from my diet. But when someone’s body goes through such rapid weight loss, all it craves is high fat, high calorie foods just to maintain some sort of energy level. That’s why during every hospital visit all I could think about was burgers.
But then developed this fear of food. We talked a lot about this in Amsterdam, how various eating disorders develop in people with IBD, not necessarily because of our desire to have a perfect figure, but this anxiety that anything we eat will make us sick. As hungry as I was, the thought of eating some berries wasn’t worth the trouble.
This also doesn’t take into account the dreaded effects of prednisone: the magic pill that heals us while killing us at the same time. At the exact moment of being horrified to eat, my brain was telling me to eat everything in sight. Confused yet?
Cue next level of perplexity: body dismorphia. My body went through such rapid weight loss and weight gain that I honestly couldn’t tell you if I looked like a skeleton or like I was morbidly obese. In one of my worst flares I was eating like crap, and felt even worse and I was certain I must have gained 30 lbs. I remember telling my sister that when I got off the plane from England, don’t judge me because I am well aware of the weight I put on but I would get back on track once I was home. And low and behold she tells me it’s the skinniest she’s ever seen me.
When you have an internal organ that is inflamed and sick, you just feel weak and unhealthy. And thus, you feel fat and bloated. But in reality you’re withering away (muscle first) to more than 35lbs less than your normal. At the same time, my face swelled up to unrecognizable chubbiness because of the magic pill. So while my face looked like I put on 20 lbs, my legs looked like I dropped 35. And there I had everyone telling me how great I looked because I slimmed down, yet my face was white as a ghost and I was pulling chunks of hair out of my head.
How was I supposed to look in the mirror and maintain this healthy lifestyle let alone a confident mind?
In every last ditch effort I made to save that little sick organ of mine, I also tried all of the restriction diets I could. FODMAP, Paleo, gluten free, egg free, dairy free (all of which I have also tested highly intolerant to) etc. you name it, I tried it. I was trying to reduce inflammation and curb any added disruption to my digestive tract. And following this alone is extremely difficult. But when you break down the fact that eating is a very social aspect of life, the emotional and mental toll it takes living so restricted is exhausting. No one wants to be that person out for lunch who tells her girlfriends we can’t split that appetizer because there’s egg in it. Or that person who has a special pot of potatoes made for her at Christmas dinner without any butter or milk. Or who has to grocery shop solo because everyone else in the house can eat normal foods.
One more thing (LOL). I am a PICKY eater. It wasn’t even until the last decade or so that I even liked vegetables or fruit. So when the natropath told me the best way to get my nutrients was to have a smoothie every day I about puked in his office. I HATE all thick drinks so there was no way in hell I was going to chug down a green smoothie or protein shake. I’d rather skip that meal. Also, life’s too short to not eat ice cream!
Okay so there are all the issues. Complex, confusing, overwhelming and chaotic. And I wish I could tell you I’ve now enjoy this profound and meaningful relationship with food now that I have a J-Pouch and all is well in the world. WRONG. But what I can tell you is this shift in my perception of food and my body. Balance. I will whole heartedly tell you I am never going to cut pizza out of my life. And I am the poster child for having a big old glass of wine on a Friday night. But I also have spent the last year training my small intestine to digest fruits and vegetables without the help of my large intestine. For the most part I spend Monday to Friday eating a lot of fruits and vegetables, lean meats, whole grains and a lot of water. And my bowels appreciate that since otherwise I experience some pretty nasty butt burn from acidic, deep fried and sugary foods.
I think the key is to listen to your body. Nourish it with care and pride. Promote health with mindfulness and attention. Develop well-being with kindness and gratitude. Strengthen it with love and compassion. And take comfort in the fact you’re not sick any more. Your body is capable and proficient in doing things you never thought you’d get the chance to do ever again. So eat the ice cream.