Graphic Honesty: The GP Edition
You know you have a good friend when they call you out.
I have a good friend.
The other day she texted me, “I like your A Day in the Life” with gp, but I thought you should be more graphic with your pooping. You spare the reader.”
She was totally right.
I did spare the readers. I thought it might be too much for some to handle. I didn’t want to be gross. I wanted a ‘cutesie’ story to enlighten people about my illness. I didn’t want to scare people away. I was sparing my readers, but also, I was sparing myself.
My reply to her:
“Oh god. I wanted to spare me. I didn’t want to think about how it boils in your colon and then you blow weird fluffs and your butthole just starts burning and you get paper cuts from wiping so much.
I also thought way fewer people would read out of fear/wouldn’t be able to talk to me again without thinking of my pooping.”
My friend: “I dunno. I think it’s important.”
She is very, very right.
You see, I left out a WHOLE BUNCH of graphic descriptions because honestly, it’s embarrassing. I know I shouldn’t be embarrassed of a medical condition that I have no control over, but I am! I don’t want to be known as the weird poop girl or the girl who won’t stop talking about her illness. I want to be seen as strong and courageous and somehow, in my brain, it just feels like going into grave detail will result in obscene adjective girl instead of what I want.
But my dear friend made another good point (she is a smarty). When you open up, people respond.
And the GP community desperately needs people to respond. There is no cure. The medications approved in the United States are plagued and associated with terrible conditions and side effects. There is limited research. Most of us don’t even get an answer to why we have it. It is labeled an invisible illness and because of that, it is often ignored. And with that, suffering is ignored.
I don’t think it is intentional or anything. I just think that unless you are the one suffering or someone you are close with is suffering in front of you, it is easy to brush it off. I understand. You have you own shit. We all do.
I can’t speak for everyone, but I have talked with many people with chronic illnesses. And they agree. It is difficult and embarrassing and scary to be super open about the condition you have. I feel like a lot of us hide the issues we deal with because we don’t want to be seen as weak people or victims to a disease. We don’t necessarily want gargantuous amounts of sympathy and condolences. I think that most of us just want more research. We want medicines that work. We want doctors who know how to help. We want cures. We want more awareness to what are conditions are actually like.
So here I am. I am about to share a lot of very graphic things I might be embarrassed by the end of it. But. I want to be honest and truthful about what it is like to live with GP. I want you to understand. And I also want others out there, who might be suffering in silence, to know that they are not alone.
Before I became ill, I had plenty of experience with under-sleeping. In high school, I was on the school debate team. This frequently meant going long days on 5 or less hours of sleep for tournaments. During the summer, at debate camp (yes, it’s a thing), it was pretty much two weeks to a month of just not sleeping – at all. Kids would take caffeine pills and buy energy drinks by the case to stay awake during camp.
And then came college. My first two years of university were a sleepless blur. I averaged 4 hours of sleep a night. I would pull an all-night, or damn near one, at least once a week. I pretty much did not sleep until I became ill, when my body would do nothing but sleep.
I was very familiar with the concept of exhaustion before I was diagnosed. And I was familiar with working through it. However, I was on the verge of burnout when my body started revolting against me. I was exhausted, worn-down, and stretched-thin and then it became worse.
The exhaustion associated with malnourishment is worse than anything I could ever imagine. I slept 14 hours a day and still didn’t have the energy to walk myself to class on my tiny campus. I felt weak and broken. It felt as though all of my limbs weighed hundreds of pounds and were painful to move. Caffeine never had an impact on my state. I felt paralyzed and stuck in my body. I really just wanted to fall asleep and never wake up. I don’t experience the exhaustion quite to the point I did when I was first diagnosed, but I do get days where I am unable to do anything but lie on the couch. I often have to use my sick days from work for these days because the thought of even getting to work seems insurmountable.
This is one of the most difficult parts of my illness, for me personally, to be honest. I was always bright, sharp, and intelligent. Difficult tasks came easily to me. My intelligence was a tool that I used every day to make my life easier. And then it went away. My ability to study and learn new information was nonexistent. I couldn’t recall facts that I knew I *knew*. This brain fog feels less like fog and more like giant chunks of my brain have been removed. It feels like I am trying to retrieve information from filing cabinets which I can locate, but am unable to unlock. It is incredibly frustrating to know that you have learned the information, but you no longer have access to it. Also, my ability to calculate and process is much slower. I used to find playing strategy games enjoyable; now, if I am having a flare, I find them infuriating. To remember all the rules, let alone develop a coherent strategy is just too difficult.
I want you to think of every time you had a stomach virus or food poisoning that made you have terrible poops. Every time I have a flare, I have ALL of those poops. I have white poops (from not absorbing the nutrients from the food). I have runny poops. I have explosive poops. I have poison poops that make your colon cramp and you sweat. I have too many poops. I have poops that shoot from my bum in tiny, acidic fluffs that set my butthole on fire. And then I can have no poops. I can go days without pooping because all my food bulk is stuck in the upper part of my digestive tract. And then after four days of not pooping, I have a day where I spend most of my time in the bathroom. Hint: I highly recommend wet wipes. They have saved my hiney many a time.
The pain I experience during a flare can range anywhere from a dull ache to feeling like someone is carving my insides out with a butter knife. This is just the pain I feel in my abdomen. If I have been in a flare for a while, my entire body begins to ache from not getting enough food. My joints and bones ache. My muscle randomly cramp and spazz. I begin to feel like I am 90 years old and crippled. I also develop headaches. I don’t know exactly why this is, but they are frequent. Probably a mixture of malnutrition and blood sugar crashes.
This is probably the most frequent symptom that I have. Even when I am not having a full flare, I am often nauseated or have heartburn. During a flare, I wake up with a sore throat and a cough from my stomach acid eating my esophagus/base of my throat all night. I usually wake up nauseated from having too much stomach acid in my tummy. Nausea is a weird thing; with gastroparesis, you are nauseous if you have an empty stomach and you are nauseous if you eat too much (too much being more than a few bites of food at a time). I have been prescribed maternity nausea medication, but am not able to take it; it makes me fall asleep and I have to do things like go to work and be an adult.
I don’t throw up super often. Usually, I might barf a little into my mouth. I rarely full-out vomit, but that is because I have worked very hard on not barfing. Seriously, barfing is inconvenient. So, instead of throwing up and gaining som relief, I hold it down and deal with the nausea. And, generally, if I barf, it is because I have food sitting in my esophagus (which is uncomfortable in its own right) and then something sets off my gag reflux, like coughing or brushing my teeth. When I do barf, it is usually completely undigested food. You would probably be able to reassemble the meal I ate with my vomit because it is so identifiable.
I have mastered the ability to look as though I am about 4 months pregnant by eating a small meal. Also, just by eating a food bites because rotting food releases gas into your digestive track. I own a lot of pants that are made of stretch material for a reason.
Blood Sugar Roller Coaster
I suffer from low blood sugar a lot, which makes me hangry. I don’t mean to be cranky, but it is a well-known side effect of low blood sugar. Additionally, after eating, I can suffer from a pretty hefty blood sugar crash. I am not really sure why this happens (really, the science on GP is lacking). My hypothesis is that the body releases insulin when we eat to help us digest the food, specifically the sugars/carbs in food. However, my body doesn’t actually digest the food, so there is nothing for the insulin to interact with. I usually become incredibly sleepy after eating and fight this by ingesting candy (simple, short-chain sugars are the only thing that is partially absorbed in the stomach) and drinking copious amounts of caffeine.
The thing with having food rot in your belly is that it throws off the bacteria balance in your body. I don’t develop more acne on my face when I have a flare, but rather I develop single, large, painful pimples in random places on my body, like on my tummy. I don’t get these unless I am having a serious flare, but they do happen. And they are just as gross as they sound.
There you have it. I have come clean. It is not pretty, but illnesses never are. My hope for this wasn’t to gross you out or make you feel as if I am attempting to one-up every time you feel unwell. I just want more awareness for the invisible illnesses, for what many people go through on a daily basis, and in turn, hopefully more scientific discovery because, honestly and truthfully, no one should have to suffer in silence.