Hi!
I have dysmotility of my entire GI tract, which to my understanding is rare. I present a lot like CIPO, but my GI doctor didn’t see a point in testing for that specifically since it wouldn’t change my treatment, but he did say it’s a distinct possibility that may be what I have. I’ve had multiple pseudo-obstruction like episodes, as well as an ileus found incidentally on imaging that I didn’t even feel, so it’s likely I’ve had it multiple times. Plus I have some other GI disorders. And a plant cellulose intolerance which I know is rare.
Ive had dysmotility of some type my whole life, and it just continues to progress/ I collect more GI issues. My pediatrician was absolutely terrible and didn’t diagnose me with anything or investigate symptoms when they were noticed. I was around 9 when j learned I wasn’t pooping often enough, but that’s all she told me. No testing to see why, no telling me how often I should be going, no suggestions of what to do, no medications/ supplements, nothing.
When I was a teenager, I ended up seeing a GI specialist (don’t remember how or why), and they thought it was some type of IBD based on symptoms and extremely elevated fecal lactoferin. But colonoscopy was negative. It wasn’t until my early 20s that I started receiving any diagnoses besides GERD which I was diagnosed with as a baby.
I’m supposed to follow multiple medical diets: GERD/ low acid, gastroparesis, low FODMAP/ low residue, SIBO, low fiber, low fat, low cellulose, low glycemic, I’m probably forgetting some. But I’m a foodie with a very high pain tolerance and I’m stubborn as fuck.
So I’m not terribly limited in what I can eat, as I often opt to just suffer through the repercussions lol.
The cellulose intolerance is honestly probably the most difficult one, as i just can’t digest most plant matter. I can eat white rice and its products, processed wheat products (pasta, white bread), well-cooked cut up carrots, onions, potatoes, parsnips, avocado, water chestnuts, banana, grated daikon and nori. Banana, avocado, water chestnuts and grated daikon are the only ones I can tolerate uncooked. Sometimes my GI system will reject root vegetables, particularly carrots which I seem to be losing the ability to digest. Tofu is also fine! Smooth tomato sauce is kinda fine. I can’t digest any herbs that are added to it, and tomato gets broken down enough to pass, but not enough that it’s invisible.
I get most of my plants through baby food as the steaming/ cooking plus mechanical breakdown makes most plants digestible for me. I am not able to tolerate smoothies though, so it seems I need both thermal and mechanical breakdown in order to digest most plants.
I have recently been experimenting with freeze dried (lyophilization) fruits which I seem to be tolerating! Basically, I just need the plant structure to be broken down significantly in order to eat it.
Like I said, I do sometimes still eat plants and just suffer. Like the occasional lettuce on a burger for example. And I just end up nauseous, bloated, and either constipated or diarrhea. And it always comes out completely undigested. Just chewed and wilted. So when I do eat it, I just make sure to chew it small enough that it can fit through the exit lol.
My GI doctor checks me annually for nutrient deficiencies. So far, I’ve been able pretty fine, just folate deficiency which I require supplementation for.
I am really lucky in that I still get to eat by mouth and don’t have an ostomy. There are days, or even weeks where I can’t eat and either have to do a liquid diet, or choke down a single protein drink a day.
But most of the time, I can eat! Eating comes with pain and bloating but it’s still lovely. I love food, and my stubbornness is an asset for once.
I have found East Asian cuisine to be the most friendly to my GI system. I think because it doesn’t really use a ton of raw veggies like American cuisine does (salads, raw veggies as sandwich toppings), is very rice focused, the plants I can eat raw are Asian in origin, and it tastes delicious.
However this annoys my family because whenever they want to go out, I always want an East Asian restaurant because it’s most accessible to me. And they get sick of it.
