#if you're a crohnie and you think I missed something important I apologize!! feel free to add on

[portalhome]

Crohn’s disease: what it is and how to write it

tw graphic discussion of physical illness and surgery

I hardly ever see Crohn’s representation in media (in fact, I’m not sure I ever have), so this is me trying to bring attention to that! Hey, everyone-- Crohn’s disease is a thing! 

Crohn’s disease is a chronic (read: no cure) autoimmune illness (read: body attacking itself) that affects the digestive tract. Depending on the person, it can also affect your joints, eyes, mouth, and skin. 

If you’d like a laugh you can Google it and you’ll see a lot of poorly-staged photos of various people wincing and clutching their stomachs. 

Okay so that is it?

Crohn’s patients will often spend their whole lives experiencing interweaving periods of “bad” and “good,” aka remission. The good periods could be months or they could be years, and what jolts you into a bad period (a “trigger”) could be anything from stress, building up a tolerance to your medication, seasonal changes, or even just menstruation. 

It’s an “invisible illness,”  meaning most symptoms aren’t something you’d be able to tell just by looking at someone. Oftentimes I’ll hear something like “you don’t look sick.” Like I haven’t been able to eat anything but applesauce in weeks but since I’m not foaming at the mouth I’m fine?

Triggers

Crohn’s is an EXTREMELY varied disease. Advice for one person by no means works for another.

“hey my cousin’s sister’s boyfriend has Crohn’s and he went into remission when he went gluten free why don’t you do that” wow if only I had tried that in the years of suffering I have experienced I must not want to get better

Food triggers differ drastically-- and not just by person, but also by the month or even day. Sometimes I drink milk and I am happy as a clam. Other times I drink milk and I spend the rest of the night in immense pain. 

Common food triggers include fried foods, dairy products, and alcohol. I try my best to avoid these, generally. 

Traditional “safe” foods are saltines, toast, bananas, and applesauce. Sometimes you just have to stay on a diet of just these things for a few days and that’s how it be.  

Stress is also a common trigger, which might manifest itself in, say, a stomach ache before a performance or during an exam. 

Symptoms (again, Crohn’s is a very varied illness: not everyone experiences all of these!)

Quick weight loss (so you need to keep an eye on yourself!) 

Loss of appetite 

Fatigue (what does this mean? Imagine napping not because you want to but because you physically cannot feasibly do anything else.)

Stomach aches (and you can go from 0 to 100 so fast, which is why most Crohnies are like a walking pharmacy with pain medication)

Body saying Hello We Have To Use The Bathroom Now And No I Will Not Be Taking Constructive Criticism At This Time 

Obviously there are more, but to keep things concise I’ll move on! 

Daily life

People with Crohn’s are hospital regulars. Whether you need to go to the hospital at regular intervals to receive your medication intravenously (like I do) or not, usually you’ll end up having to go at least every few months to get blood drawn and various other tests (and colonoscopies are an annual experience at the very least). 

With Crohn’s comes this like. Magic bathroom awareness. Like I will almost always be able to tell you where the nearest and second-nearest bathrooms are.

This comes with another thing: being in a place without a bathroom is stressful-- downtown areas that are snooty about “you must buy something before you use our restroom”? Stressor. Long car rides? Stressor. (Travel in general is a trigger for me for this reason.) 

A huge under-appreciated aspect of being a chronically ill person is going about daily life while on pain medication, which is a necessary evil sometimes. This is especially true as a college student-- paying attention in math? Hard. Paying attention while on pain medication? So much harder. I need a t-shirt that says “anything you can do, I can do on pain medication.” 

This is perhaps a more personal addition, but I experience a lot of body image issues stemming from going on steroids (which many Crohn’s patients will have to go on when medication is not working) which (among many other things) will make your face become a lot rounder. The sensation of double-taking in the mirror? Not enjoyable. 

Surgery and colostomy bags (I haven’t had surgery so I’m not an expert on this!) 

For some, medication doesn’t work. You can spend years trying to find something and eventually decide that surgery is a better option-- or perhaps your symptoms worsen to the point where surgery is necessary.

If both the colon and rectum need to be removed, the end of the small intestine is brought through a hole in the lower abdomen so that waste can exit the body that way-- it’s collected in a bag that’s on the outside of the body. 

The bag hides under clothing very discretely. You’d have no idea it was there unless that person brought it to your attention! 

Thank you for your attention! I’d very happily chat with you if you have further questions!