#crohnie

Me: [gets s tummy ache]

Me: Interesting Result.

Me: [eats it again, gets a tummy ache again]

Me: And consistent too!

Me: [eats it again, gets a tummy ache again]

Hi @hauntedmoontimetravel !! Lovely question but took me hours to write lol.

Crohns disease is chronic and an invisible illness like any other autoimmune condition and my intestines are effected by this.

On a day to day basis:

When in remission that is having no active symptoms

- i face joint aches (nowadays its ankle aches and back neck ache)

- less energy (so i sleep a lot more than people usually do typically 9 hours daily) and as someone who gets periods this gets worse during those days

- getting tired easily

- cant do any intense activity or else ill vomit

- dietary restrictions (majorly omelettes or any egg dishes other than boiled eggs but there are more like cauliflower makes me gassy and dairy except yogurt gives me pimples and sometimes rarely nowadays loose stool…) if i eat such items then i end up vomiting, having acidity or acid reflux and have stomach ache that would hurt like someones trying to rip apart my organs and even lower energy

- In general i keep in check my intake of refined/white flour and fried items although currently been eating a lot of chips because it feels good like its a stress buster.

- Another is i cant go long without eating otherwise i get stomach ache and start feeling like even more low on energy so if i had lunch at 2pm after 4hrs i need to eat at least something but more than say 2 bananas.

So you can see it isnt that severe unless i eat outside meals then I’ll get sick easily and frequently so only home cooked meals are preferred.

When Stressed:

When im stressed my appetite immediately drops also during periods which is also stressful and i literally dont feel like eating more than 1 meal a day but i do eat 3 meals just very less in quantity. Thats how i know im at my worst mentally.

Management:

So on a daily basis for management i take immuno suppresants 1gram of mesalazine (it has the least side effects of all the immuno suppressants) 3 times a day after each meal also folvite and sompraz on empty stomach each morning for stomach acid and i dont take any supplements currently but i was put on and off on vit D3 and iron tablets. Personally, i think im still low on iron lol.

Main Struggles:

The thing about autoimmune diseases is that once you get them you easily are at risk for other chronic diseases especially as a woman the list is even longer. Thankfully, i dont have any other disease other than this and some mild ent related issues.

So, my biggest struggle is with stamina, (im always out of breath climbed 1 floor of stairs out of breath…), exercise, pain tolerance and bone health. Sometimes i feel like this is regular ache and takes me time to realise theres nothing known as regular ache lol and somethings off. Its due to getting tired easily that its hard to stay consistent with exercise so i have gained a lot of weight in past 2 years (also cuz of anti depressants). This puts me at risk of other chronic illnesses as well ugh this is endless.

Anyways, due to my immune system being suppressed constantly my lymph nodes are always swollen and im at risk to catch communicable diseases easily in comparison to people with proper functioning immune system and wound healing is slow.

Check ups:

I need yearly check ups so each year i get tested for inflammation (which is never below 100 if autoimmune) mine was 300 last i checked about 2 years ago (last year i procrastinated) due to stress (that year i dropped out from law school and had a break up …) and deficiencies (blood work) and get colonoscopy to actually see how are the insides of my intestines.

About colonoscopy, it requires a prep so i prefer to get admit because it makes me feel so weak that its not possible for me to take stairs or speed walk. Essentially this laxative (of 1L horrible tasting) makes you go to bathroom for about 15 times to a minimum of 7. So to stay hydrated so that i dont pass out everything i take fluids via iv when i do get admit.

During flare ups:

There are other symptoms that show up if i not in remission or having a flare up (if i dont take my meds or the meds arent enough or have stopped working) such as weak eye sight and the white in the eyes becoming off white and even lower energy levels that even walking gets hard due to constant stomach pain many antibiotics, anti acid… and all stop working and over time due to diarrhoea and vomiting i end up losing weight and become anorexic it gets so bad that i lose 2kgs a day to 4kgs.

So ofcourse i need to get admit in such cases and be put on corticosteroids and this medicine has A LOT of side effects and makes you immunocompromised.

Vegetarian dietary nutrition taken almost everyday:

- coconut water/electrolytes especially if i exercise

- cultured plain white yogurt with lunch and dinner for probiotics

- protein like white rice (although has more carbs), lentils, split mung beans, kidney beans, pigeon peas, black chickpeas

- green tea for antioxidants unless i have brain zaps

- for fibre i take chia seeds/fibre biscuits/fruits or psyllium husk only if im constipated

- for fatty acids i take one spoon of plain non roasted flaxseeds (need to start taking them again)

- For iron 5 dates (need to start taking them again) or dates syrup as a sweetener

- others - puffed whole wheat flatbread not daily, at least 1L water but i aim for 3L, dark chocolate and meds

- cheat items been consuming recently - peach flavoured sparkled water, Vietnamese cold coffee and chips.

So far, 4 sharps containers have showed up

Thinking about the fact that it's 14 years since I really started to fall apart health-wise. And while there have been varying parts that have been steeper slide than others, I feel like humiliation and rage are both pretty damn perpetual feelings when you have severe Crohn's.

Humiliation? The soft kind, like feeling humiliated because you're left out of things because you've been unable to go along for a while so you're dropped, forgotten. The hard kind, like making sure your half hour walk to work has at least five public bathrooms along the way. Like dealing with a temporary colostomy at 23. Like having your bag leak the second time you sleep with someone. Like wearing period undies every day not because you're menstruating but because you can't trust your gut not to let you down.

Rage? At all of the above. At the way that your twenties were stolen from you and your thirties are still unpredictable at beat. At the 'oh IBD? yeah I have IBS too' replies. At the having to soothe your mother through the possibility that she might need an ostomy (at 71). At feeling so behind on life because of all of the above. At not being able to take any over the counter painkillers besides panadol. At not having the ability to spend extensive time overseas because of your medical needs and expensive drugs.

I try not let my Crohn's control my life or to focus on it too much. Or if I do, I try to focus on the fact that I haven't needed surgery in 9 years. Or that I haven't been hospitalised for a couple of years now. But days like today, with no obvious trigger, with no cooperation after dosing on loperamir and tramadol... I just want to scream.

And Raffi's words ring really fucking true.