“Cratered”: On Having Crohn’s Disease
First, stop eating. It’s easy because the flavors hurt: the shock of cinnamon atop pumpkin spice latte, the harsh curl of cilantro in an otherwise bland bowl of Vietnamese noodles. It’s easy because it feels like control, and your body will thank you with the amelioration of cramps, of crinkling pain in your stomach, to the left and right of your stomach like the less desirable regions surrounding a bull’s eye. Your body will wake you up in the morning with cold sweat, with clamped muscles. You vomit stomach acid. You eventually relent, and at the hospital, they are cavalier about your symptoms. It is 7PM and you have eaten three animal crackers today. You will spend twenty-four hours in the E.R. “It’s lucky we were able to admit you,” Dr. Eric says. He is handsome and scruffy, green-scrubbed—a soap opera version of a doctor. “You should feel lucky that you’re not really that sick.” Eric is his real name, because honestly, truly, fuck Dr. Eric.
This is not how it starts. It starts when you are eighteen, in college, and you can’t hold down a shot of vodka. Similarly, you can’t chase the non-shot with cranberry juice. Your mother suggests heartburn, which sounds like something only fifty-year-old men have and seems to be a dig about how oversensitive you are. I’ve never met a person with so many feelings. Your roommates are concerned. Your friends are jealous. You are not gaining the freshman fifteen. You are light as a feather, stiff as a board.
At the health center, the nurses trill. A young woman! Nauseated! Check, check. They are disappointed with the state of your fresh and unproblematic uterus. You keep a food diary and narrow it down to turkey, a ciabatta, herbed mayonnaise, a sleepy sheet of romaine lettuce. It’s called a Vassar Club and comes housed with contraband carrots and potato chips, both on the vomit list. You struggle through one each day. The health center nurse stumbles across a magic word in her questions. “Are you anxious?”
Yes; anxious is what you are. A boy in your dorm stretches like a snow angel on the floor of your triple, prophesizing: I know you’re not interested in men. I can feel it. Ask him to leave; he returns to his single to barrage himself in Wagner, seek out a haircut from anyone who’s willing to wield a pair of scissors. You are anxious about what he sees, about what everyone before him has seen. Anxious about the lack of privacy, the constant social expectations. Anxious about being anxious, how it’s tugboating you towards an illness you can’t explain.
This is all the diagnosis you will ever need. It is swift, all encompassing. Nervous stomach, they explain. The rest of you is calm, collected, ready to host a public forum on whether we should invade Iraq, but your stomach is bulging, poisoned with panic. They are satisfied and you slog through the rest of the year, trying to pass off your health problems as pickiness. Over a break, you visit your friend at her parents’ house and when her mother makes chili for dinner, you have to tell her you can’t eat it, not even a bite. “Sarah didn’t tell me you had dietary restrictions,” the mother says, graciously swooping back to the kitchen to prepare plain pasta from a cobalt box. What would you have told Sarah to say?
Your mother explains the heartburn theory to doctors. She is persistent; you are an only child who will eat only sandwiches. You buy special pillows, play roulette with every antacid the insurance company will cover. Purple pills an hour before you eat. Avoid salad dressing. You get better and it is a triumph. The sickness moves further into the horizon until you can only just see its steeple glittering in your past. When I was sick, you begin a sentence. From enough distance, you can reminisce about being thin, forgetting the tendrils of pain that made it difficult to walk.
When it happens again you are twenty-three. At your first, miserable job, you ping-pong between two available bathrooms, where your body rejects every piece of food you attempt. Officially, the company gives no sick days, though they do offer three consecutive days off if you have a child, and that child dies.
You take vacation time to go to the hospital and have a small capsule endoscopy. A camera swims through your digestive tract, capturing images of your insides.
Your doctor sits with you and pores over slides with a red pen, like your workshop professors careening through your amateur prose for an excess of the verb “to be.” Dr. Zingler circles the places where your body could be more successful. Your digestive tract is cratered with blisters, he explains, and the image that comes to mind is that of the sky—a sweeping, non-New Jersey sky that contains generous, sprawling constellations. You probably have Crohn’s Disease, he says gently. We will have to do some more bloodwork but you almost definitely have Crohn’s Disease.
The writer in you finds autoimmune disease poetic: your body, unsure of what is harmful and what is safe. Dr. Zingler writes you prescriptions, promises this is progress. A diagnosis is a gift, he explains: now we know how to treat it. Your illness is a child, stickily reaching for a box adorned with a bow.
(If I could spend all day telling you how beautiful, how exquisite and magical it is to be well, I would. My students complained that no one writes about happiness. For so much of those two years, between when I was diagnosed and when I turned twenty-six, I was healthy. I ate raspberry donuts. I fell in love, went to graduate school, moved to my first apartment and was elated and terrified and dizzied by how quickly I was changing. I took eight enormously blue pills per day and they worked, until they didn’t anymore.)
Then, twenty-six. Stop eating. Stop going to work, stop sleeping through the night. Stop socializing. You call your best friend Caroline, who is pregnant and on bed rest with her first baby—a girl. Commiserate about your exhaustion. Call her while you struggle to walk home from the pharmacy, make her repeat the same details to you over and over as you slump on a stranger’s stoop. The theme of the nursery is woodland creatures. There is a fox involved.
Your doctor calls in a prescription for a newer, stronger medication, and the insurance company replies that they need time to make a decision. What they mean is: we would prefer not to help you, but would rather avoid saying so outright. You call back. They pretend not to have received a rush on the request. A woman named Esther flatly explains that the rush means you will have a decision in 72 hours. It is Thursday, which leaves you over the weekend. Your response is immediate and hysterical. You sob to Esther, who is flustered as your conversation sails off-script. “You sound upset,” she flummoxes. “Keep calling back. You can call every day,” she assures you, as though you wouldn’t want to inconvenience Esther. I can’t make it, you think. You can’t swallow a sip of water.
Before you leave for hospital, take a long, decadent shower. Gather all of your electronic devices, your students’ essays. In the ER, non-stop coverage of the Ebola outbreak blares from a wall-mounted television. Half of the waiting room cloaks their mouths in masks, like polite cold carriers, and the other half hungrily swarms through food brought from the outside: glistening triangles of pizza, thick donuts with sprinkles. You long for donuts. The triage nurse is unconcerned that you can’t eat or drink, that you’ve had a fever for a week, that you have a chronic and incurable disease. She tells you to have a seat, which means you will be waiting for the next five hours. The doctors tell you that they’re waiting for a bed upstairs, which means you’ll be sleeping in the hallway in front of a closet marked BIOHAZARD.
In the E.R., you are very near the telephones, a cacophony of automated tunes that, with your eyes closed, swell around the gurney like a traveling symphony. Time vaselines over your slumberless, painful evening. You beg for Ambien and a nurse named Anthony ignores you for an hour, five separate occasions. Make a veil out of your cardigan. Wait. Keep waiting.
This is how it works: at your weakest, you are meant to be supercharged, advocating to be taken seriously. You should be assertive, resilient, loud. Above all else: loud. Unignorable. In reality, your voice is breathy and hushed, still—perpetually—poised for approval and acceptance. You are seven years old, fingers knotted on your lap while your piano teacher explains how to do two things at once.
Around four A.M. they wheel you away from the sea of chirping telephones, next to an agitated and clearly mentally ill woman who is effusively threatening a nurse named Lucy. She lurks outside of your curtain, bemoaning her treatment, her malfunctioning I.V. They treat us like dogs here, she commiserates, before divulging the details of her infected gallbladder. Administrators flock to the gallbladder patient, determined to appease her. Clench the cardigan tighter. Dr. Eric reminds you of your health. I had to fight to get you admitted, he elaborates, and waits for you to thank him.
Every doctor tells you something different, including: this CT scan should’ve been administered the minute you got here. We forgot to give you a pregnancy test, so now we’ll have to wait to administer the other test. You are not pregnant. You are one thousand percent un-pregnant. You’re gay, you announce to under-investigation Lucy. It’s a surprise, these clotted words scrambling out of your mouth with confidence; you’ve never said them without a lengthy disclaimer about the meaninglessness of labels, the intrinsic falseness of it all. Think of Faulkner, the quote push-pinned to your desk: I knew that that word was like the others: just a shape to fill a lack; that when the right time came, you wouldn’t need a word for that any more than for pride or fear.
You’re not not gay, exactly.
We’ll wait for the test results, Lucy says, but leaves your urine sample at the foot of the bed while she checks on her other patients. It sits, waiting for you. Think of Caroline’s baby, sloshing jumpily in the womb with her never-seen-light eyelashes, her in-utero dreams. For a second you hope, irrationally, that the test comes back positive, that what you’re filled with is a miracle.
Tags: amy feltman, chronic illness, crohn's disease, health
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They often tell celiacs "at least it's not Crohn's."
I'm sorry this happened. Thank you for sharing your experience (this is a beautiful essay). I hope you are feeling well now.
I have to admit I read this essay and felt relieved I "only" had celiac, even though I spend 99.99% of my time cooking or sterilizing my kitchen.
But if you read the blog "Bitches Gotta Eat," the author (who has crohns) said she was relieved to not have celiac. So….who knows.
Yeah, I had that too. And whenever I talk with other people with Celiac, I'm grateful that I had an easy diagnosis – I had almost no symptoms but a strong family history of it when I insisted on being tested.
I think both are difficult – I wouldn't wish either disease on anyone. I'm grateful to be able to control my Celiac with diet, but I can see why others are grateful not to have to follow such an insane diet.
I did not have an easy diagnosis but at least my intestines aren't blistered I guess. (Altho celiac basically destroyed parts of my nervous system, eeek.) The only thing that's really annoying (other than not letting others cook for me) is the expense of the diet.
But really, I'm sure that neither is enviable, but both can be dealt with! We're all troopers.
The nurse whistled appreciatively. “You’ve lost so much weight,” she cooed. “What’s your secret?”
Excuse me while I set everything on fire.
Dibs.
I respond to this ghastly question with "bleeding intestinal ulcers," said in the same tone a person might say, "Oh, I run."
I know, right?!? That sentence just made my stomach drop. Ugh, of COURSE that's what the nurse said.
“You’ve lost so much weight,” she cooed. “What’s your secret?”
More than one medical professional said something like this while I was in the hospital for gastroenterological surgery, following five days of persistent vomiting and another five days on IV/clear liquids only.
One nurse joked after my surgery that having a chunk of myself cut out would at least mean losing a few extra ounces.
I was too weak and doped up even to object, and I still regret it.
I actually get a kick out of telling people "crippling suicidal depression" when they ask how I've lost 70 lbs in the last 5 years.
How messed up is it that I wish mine would do that to me instead of whispering gently but insistently, "Go for the cookies! They'll make you feel better…"? It lies. The cookies do not help.
I want to cry in sympathy
I hear you!
Right beside you. I once didn't die because I remembered James Dean and his beautiful corpse and, well, suicidal ideation makes me fat.
I know I've said this before, but a nurse once said that to me when I was in the middle of chemo.
I will help.
My spouse lost between 1/4 and 1/3 of his body weight between the ages of 18 and 25. He's now 34, rail thin, rock-star-esque almost, except his skin hasn't been destroyed by drugs and drinking. We run into people who knew us in high school, who often exclaim "You look so good!" to which he replies with a too-bright grin, "Thanks, I almost died!"
This is absolutely astounding in so many ways. Wow. Wow, wow, wow.
ETA: I hope with all my heart that you've found a good treatment that keeps working for you, and that your insurance company gives you absolutely zero shit about it. (FWIW, I have a friend with severe Crohn's who's been on regular Remicade for over 10 years and he is doing very, very well indeed.) Props from your chronic disease buddies.
I've had Crohn's for 30 years and was deathly ill – not to be overly dramatic, but Remicade saved my life. Best thing ever.
I also have Celiac and Primary Sclerosing Cholangitis (common in those with IBD), it's the digestive trifecta, let me tell you.
This is really beautiful writing about something so aggressively un-beautiful. I hope you can continue to be well.
Yes. Perfect. I am furious.
And this "This is how it works: at your weakest, you are meant to be supercharged, advocating to be taken seriously. You should be assertive, resilient, loud. Above all else: loud. Unignorable." is so true, for every illness, for every struggle, when you most need to advocate for yourself is when you are least able to, and it is so unfair.
That line really resonated with me too. I have PTSD from childhood trauma and doctor's visits are particularly triggering for me. It's so hard to advocate for myself while I'm trying to not get swept under the tide of a flashback. I've had pretty good luck training my regular doctors to not trigger me and to back off immediately if I ask them to, but specialists are their own level of hell.
Eep, that must be incredibly difficult to deal with! In my experience specialists tend to get a sort of tunnel vision, which is frustrating.
What is it in people or in US culture that makes us default to the idea that people like to just fuck around and pretend to be sick? Is illness and pain really that glamorous?
I can't tell you how many doctors have accused me of making shit up because they can't easily diagnose what is causing me pain. It's bullshit, and I don't know where that accusatory thinking originates.
Yep. I finally got diagnosed with fibro after innumerable doctors being like "I think you're just depressed! Maybe you should try talk therapy!" Depressed doesnt make my joints feel like fire the day after I exercise, sorry doc.
I think a lot of doctors would rather imagine that you are making it up than admit that they don't know.
Whatever your case is, I hope you find a doctor who will figure it out. I know how sapping chronic pain is.
As a fellow Crohnie, I seriously appreciate this. I remember the anxiety of trying to live life with a "nervous stomach," the frustration at being offered well-intentioned (but mainly useless) treatment advice, the sureness of my failure at succumbing to the pain of eating a food that was fine to eat two days ago. Those mouse proteins have been a godsend for me so far – here's hoping they last long for both of us.
Empathy and thanks from a fellow Crohnsian. The medical system has done so much for me and there are some truly amazing people there, but my last experience with the ER I went in there so, so determined to be a strong, pushy advocate for myself. It didn't work at all and I was left admitted and crying and starving without a clue about how I was doing and what was going to happen next. You captured that so well.
This was amazing. So, so beautifully written. Thank you for sharing it.
Wow. Such a reminder to truly think about what I say to people I don't know. Damn. I'm so so sorry you're experiencing this, that you've experienced this. Thank you for writing.
Absolutely stunning with both beautiful writing, and the idea that your insurance company can withhold vital, health-making support because, what, why? Something to do with shareholders?
(Canadian health care doesn't make you talk to Esther to get help, fwiw.)
This was very, very good. Well-wishes and empathy from an ulcerative colitis–haver.
Random post of support. I don't have Crohns (but they thought I might in High School when my issues started), but I do have gut/whatever issues… I'm one of those they dump under "IBS" aka "We have no idea but your gut is fucked, sorry." Every day is a battle. But hey, other things in life are wonderful, right?
Every time I go back to a gastroenterologist the end result is "We want you to come in for another colonoscopy." I've only had one but, really, it was enough. I don't have time in my life to prepare and deal with that kind of thing now…so fuck it. I've basically lost faith in both legit and less "legit" (atureopaths, acupuncture, dieticians, voodoo, etc.) branches of medicine completely. I get by on sheer positive thinking. Shit ain't gonna get better, but it's not going to beat me!
I'm going to try out one of those soylent variants soon, I think. Maybe that will make a difference (I say this because I have tried it yet, not because I have any "hope"). I'm sick of stressing about food (and, honestly, my issues are nowhere near as bad as yours – you are awesome! – but I hope you will accept my internet hug and support anyway!).
This, GI stuff is horrible. I had weird Gi symptoms for about a year or so that several docs could not figure out. Fortunately it mostly seems to have resovled itself on it's own. Though I am now on a low dose anti-anxiety because the actual GI issue gave me anxiety about eating in public. My issues are far less severe than the author's, lots of support to her.
Oh, IBS. I got to have both an endoscopy and a colonoscopy before my twenty-first birthday. They checked for Crohn's and Celiac disease (and unbeknownst to me at the time, kept an eye out for cancer because my dad died from a cancer that had spread through his intestines to his stomach), and then, I was given the diagnosis of IBS and sent packing with no information whatsoever about what I could do. Friends and family were always so very complimentary about the weight loss. Instead of the freshman fifteen, I went and lost thirty pounds during my first year.
I've been on a restricted diet for about three years now, and it's actually helped to a degree. My IBS periodically acts up, but now it's more of a rare event rather than a daily agony. I'd recommend checking out "The First Year: Irritable Bowel Syndrome" by Heather Van Vorous. I found it to be a great source of material for trying to figure out what the heck triggers me and how to cope, much more so than food diaries.
But, sheesh, I sometimes think I'd be game for a future where we eat a pill for all of our dietary needs and cut out the whole digestion business entirely. That'll totally show our innards. Yep.
Right? And screw chewing!
Sounds pretty similar to how I started off: re: cameras in orifices as a teen (mine were done around 15-17, I think). I recently had a camera through the one remaining orifice (Well, I guess I haven't technically had a tube camera jammed down my ear…so maybe I shouldn't count my chickens) and dear made up space Jesus I think that was the worst of the bunch. On the bright side, there was no prep period and sedation like there is with the colonoscopy.
I didn't get a label until college. Then later I found out that label meant I didn't have a real label. Good times!
I've tried a couple diets and honestly, I'm just too busy (or lazy, or both) these days. I'll deal with constant pain, gas and bloating over the mental stress over trying to figure out what I can and can't eat safely (answers: depends on time of day and speed of north wind). Peace of mind > peace of gut? Might just be me.
I eat a "pretty healthy" diet with none of the terrible American vices (no fast food, hfcs, sprouted seed only bread, stuff like that…low hanging fruit)… but I just haven't had the energy to try another round of diet restriction in a couple years. I did a 3 week I think total purge diet where I removed just about everything and added things back and, while I lost some weight, nothing else really changed. Having 5 kids makes finding the time for anything like that again rough. So, yeah. Going to order some schmoylent next week and see how far I can go with that.
I'll check out the book, and best of luck to you, fellow traveler.
Solidarity. The only real triggers I know for me are soy and caffeine.
I miss going out to eat.
Yep, I'm in this boat too. I was diagnosed with Celiac at 14, but that never totally solved it. I'm 23 now, and I've found out that the triggers were actually eggs and lactose THE WHOLE TIME. I missed out on 8 years of vegan breads, cakes and pies! But even a vegan diet has still not solved the whole thing, and I've already been tested for Crohns. Come on, guts, get it together!
Beautiful writing. I'm so sorry to hear what you're going through. My best friend has colitis, and can eat practically nothing. It's really hard for her to stick to her super-restrictive diet, as she has two little kids and is working full time putting her husband through school. And it seems like every month her body rejects something new, sending her back into a spiral of agony and steroids. Just so awful.
UCer here. I too was diagnosed with "nervous stomach," despite reporting that I was BLEEDING OUT OF EVERY ORIFICE. That particular symptom wasn't taken seriously until I vomited blood on my doctor's shoes.
Modern medicine!
I applaud your aim and foresight in that situation. Medical professionals can be such assholes sometimes.
I hope you followed up with, "Lick it up, baby."
Ugh. I can also attest to the "barfing on a medical professional" method of getting taken seriously. (Though mine was just a concussion in grade school.)
Yep. When aiming is possible, always go for something expensive the medical professional is wearing. (My partner has had crippling GI issues for decades.)
This is beautiful. I have Celiac and severe food allergies. I add new allergies on the regular. I know the pain; the tease of feeling good, however briefly; and the constant feeling that your body is always plotting against you…. how's it going to fuck with you today? I hope you find relief soon.
Such a good piece. My sister and I both have Crohn's Disease, but were both diagnosed at around age 13. Going through that as a pre-teen rather than as an adult was both better and worse: better because when you get diagnosed that young, it's your normal, so adjusting your diet and taking tons of medication and going to a specialist every few months is just How It Is, and you're too young to understand why it should be scary; worse because going through a battery of horrible tests (colonoscopy, barium enema, etc.) at that age is bewildering and traumatic, plus having doctors make shitty comments ("have you been TRYING to lose weight, though? Like dieting?" to a 13-year-old me who had just lots 20 pounds startlingly quickly) and not really listen to you because you're a kid is all the more horrible.
I can also attest that treatment options and awareness have really improved in the last 20 years, yet they are still at the shitty level you describe, which is so depressing. I take oral medication and my sister is on Remicade, though, and we're both doing well.
And finally: somehow, I am only now — from reading your piece — realizing what a zealous advocate my mother had to be for us back then to get us diagnosed. I had never even thought about that before. I am going to thank her right this minute. Thank you for that.
I was diagnosed at the same age… Love your description of it! And all the social difficulties it creates at that age really suck!
IBS person here. I had a colonoscopy at age 22, which (as expected) revealed nothing "wrong" with my gut. The problem is, as ever, an unidentifiable terror.
After I woke from the twilight anesthesia I was under, a nurse looked at me and said, with surprise in her voice, "Oh! You're so pretty!" For years afterward, I wept when I thought of that moment.
I wish you wonderful things, Amy. (And the same goes to everyone else here who has ever been accused of a nervous stomach.)
Thank you for sharing this essay. I could imagine that nurse asking "Are you anxious" and it made me furious. In my experience as a youngish woman interacting with medical specialists, stress and anxiety have been suggested as causal in ways that dismissed the actual concerns raised. As though it's impossible to be anxious and also have something else going on…Grrr.
Especially when that something else is likely to CAUSE anxiety, as well.
This is such a perfectly beautiful and wonderful account of what it's like to have Crohns.
I have Crohns since 1991. It came on me when I was eighteen in first year college. I lost so much weight, people thought I was anorexic. After my last flare up lasted nearly 3 years and had me out of work and housebound for the most part, I now have a permanent illeostomy so people think I'm cured. But you can't cure Crohns and this essay encapsulates so perfectly the anxiety and fear that I've had and still have at times because of this disease. And now seven years in to remission, I get so afraid that it's going to come back and I'm so afraid of that pain again.
There are worse things than having an illeostomy though. I don't regret that for one second.
Haha – I remember, soon after my Crohn's diagnosis, when I was 16, a distant relation chiropractor explaining to me at a family gathering that there WAS no such thing as "Crohn's Disease" (he did actual air quotes while saying this), that it was an invention of faulty Western modes of thought, and Crohn's and colitis are, in reality, merely an imbalance of warm and cool foods.
Fortunately, 100 mg of 6-mercaptopurine daily seems to have balanced out my gastrointestinal feng shui for the time being.
Wow, that's some straight-up Medieval "wet and dry humours" kind of bullshit there.
I hope you dumped a combination of warm and cool foods on his head.
That's so shitty of him! I am fond of Traditional Chinese Medicine, and it's true, the language of TCM is (to me, at least) highly metaphorical, but TCM really works in treating many chronic conditions–especially digestive ones. But no actual practitioner of TCM would talk that way–your relative is just semi-informed and being a jerk. (Also, don't get me started on chiropractors who have read like, one book on a different medical system and feel informed enough to go and on about it.)
*internet hugs* to you, Amy.
Thank you for writing this–I am going to print it out and make every future doctor I see read it.
Amy. First, your writing is superb. Second, please please please look into helminthic therapy if you already have not. And if you have and you aren't keen on it — well, I think you must try it anyway.
Read: guessillgoeatworms.wordpress.com — specifically the latest post.
Be well.
Head's up – you seem to be new around here – but this isn't the kind of community where we tell people they *must* do anything. I know you were coming from a good place, but this came across as unsupportive. That said, please continue to join us – this is a great place.
Yes, yes, yes to this post. I love that I get to read about chronic illness at the Toast. I have fibro, not Crohns (and definitely have not experienced anything as bad as what's described here), but the feelings in here are so real! What if the treatment stops working? What if you never get better? Why will no doctors take you seriously and why do none of them agree (and why do they seem to blame you for taking the advice of doctors who disagree with them)?
This was a great read, so thank you for writing it. It feels so rare to hear people with chronic illness talking about their own experiences instead of leaving it to doctors talking about their book of symptoms.
I've actually got that 'nervous stomach' people kept mentioning to you, and I admit I find it baffling to think of them being content with that as a diagnosis given what you're talking about here. Upset stomach as a result of anxiety (in my case, as a result of my OCD) is shite to say the least, but that sure does sound like them not wanting to admit they don't know what's up with you.
I can absolutely relate to the sheer discomfort of people commenting positively about weight when it's due to illness. My disordered eating habits are poor enough that I tend to eat about once a day and often only manage 1200 calories or so unless I bolster it with 'empty' calories, and over the last two years I've lost about 25-30lb, bringing me to the point of 'clinically underweight' I've always worried I'd reach. Whenever anyone comments with envy about my being 100lb, I just want to yell 'oh yeah, it's so great being exhausted all the time with a shit immune system, worrying what will happen if you lose weight due to illness'. But then I remember it's society that's so fucked more than any person and I stick with 'I lost weight due to my severe mental illness and find it hard to eat', just to try and dissuade people from trying it out.
Whenever I see those diets that say you can safely cut your calorie intake to around 1200-1300 calories after an 'adjustment period' I just see red. I keep meaning to write something up to put somewhere, anywhere, to talk about what it really means for your body to 'adjust' to living on that. Sure, you'll learn to work through it, but I can tell you right now it's not because your *body* has adjusted, no siree.
"When I was sick" got me a bit choked up.
But at least we have mouse proteins.
A very powerful essay, that describes a chronic illness and its effects in a way that I have not read before. Sad that doctors, nurses, insurance companies et al, can be so clinically unfeeling. I know they must remain professional but surely, there must be some room for a measure of empathy or compassion. If this is a measure of what you can do with non-fiction, I look forward to being amazed with what you will do in the realm of fiction, when you have completed your Masters. Thanks so much for sharing this.
Just, oh. Wow. I often peruse The Toast and have that moment of MY PEOPLE, I HAVE FOUND THEM – and now to see how many Toasties are also Crohnies! I was diagnosed in 2009, when I was 21, after months of pain and losing more of my ability to eat every day, dropping weight at an alarming rate, all the while insisting that something was seriously wrong and no one else apparently thinking that was much of a problem. I had more than my share of shitty doctors too, and one extremely tactful nurses' aide who told a long story about a relative dying of Crohn's complications as I lay in the hospital, freshly diagnosed and recovering from a bowel resection. She was an especial delight. I've been on Remicade ever since, and thank God for those mouse proteins!
Thanks so much for sharing this. The family of IBD diseases is so widespread, yet most people seem to know nothing about any of it. As much as I hate that anyone else has to live with this, it's so nice not to feel so alone.
My mother died of crohns. When you day that people give you a blank look or they say people don't die of crohns. I watched her live your description for 20 years. Thank you for writing this.
Purely wonderful insight, bless you for how well you've described asymmetric warfare we all have with the medical world. I run two medical clinics and see patient-refugees every day
This was gorgeous, thank you! I don't have any gastro stuff that I know of, but I just got diagnosed with endometriosis last year after years of pain. Feeling you on the relief of a diagnosis, and on how much just having a diagnosis doesn't really make anything better. I do think "at least I wasn't just being a wimp."
Oh my god, thank you for this! I don't have Crohn's but I have had two colon surgeries and have tons of similar symptoms I. frequently get the "how do you stay so thin," comment, to which i like to reply "I had 15 centimeters of my colon removed." but yeah. I just so empathize with this on so many levels. Thank you.
Taking Pentasa was like swallowing smurfs. They each are about 3 apples high. Only instead of swallowing a useful smurf like Hefty or Handy, who would set about shoring up the wall of my colon with either their brawn or hammers, I always ended up with Lazy or Grumpy. Or a combination of the two. They would just get down there in the pink confines of what could only be described as the rotting coffin of my colon and take fitful naps complaining the whole time.
I hope the mouse juice is (or will) work out for you.
That's the exact leave policy that my boyfriend's work has. The only bereavement leave they offer is 3 days upon the death of your spouse, child, or parent.