next_to_normal: (Buffy ugh)
[personal profile] next_to_normal
Sorry if this ends up becoming The Crohn's Blog for a while. It's been sort of all-consuming lately. I've been feeling more depressed and anxious about it than usual for some reason. Maybe it's the duration that's getting to me? I don't think I actually feel worse than I did when I was first diagnosed - when I actually ended up in the hospital - but it seems less tolerable than it was six years ago.

What happened to the girl who would throw up in the morning and still go to work, because it was only worth a sick day if I threw up more than once? I mean, obviously that's sort of crazy, but I feel like I was a lot tougher back then and shit has just worn me down so that half the time now I don't even want to get out of bed in the morning, and I've been taking days off far more than I ever thought I would. And my boss has been unbelievably accommodating in letting me work from home, but I also feel guilty because whether I'm in the office or not, I know I'm not getting nearly as much done as I would if I weren't sick. (Then again, this job requires me to do actual work. It was a lot easier to go to the office at my old job, no matter how sick I felt, when 80% of the time I was there by myself and just watching Netflix.)

And I also just don't have a lot of optimism left. We've run through most of the major drug options without success. I can keep hopping from clinical trial to clinical trial hoping for a miracle, but that in itself is exhausting, because it means more doctor's visits and more colonoscopies, and half the time it doesn't have any effect at all.

I have two more weeks before I can switch to the weekly Humira dose. If that doesn't improve things, then after 8 more weeks I can try another study, this time for an antibiotic. I'm just... tired. Of all of it. And wondering how many more things there are to try before the only options are steroids or surgery, both of which are awful choices.

Also, GOD I MISS FOOD. I've been mostly eating pastina, soup, and Ensure, and getting kinda sick of it. This is why restrictive diets don't work, because when I am food-deprived, I crave EVERYTHING. Like, we're at the point where I hear about Pizza Hut's new hot dog stuffed crust and think, "OMG THAT SOUNDS DELICIOUS," even if it also makes me feel a little nauseous thinking about it. That's not right, y'all.

I suppose if I ever feel well enough, I can afford to splurge on a hot dog stuffed pizza, since I've lost about 25 lbs during this latest flare-up. Which is another thing that sort of frustrates me. Not losing weight without trying, that part's awesome, but the fact that no one seems terribly concerned about it? Like, the week before my colonoscopy, I lost 6 lbs. IN A WEEK. That's probably not healthy. But because I am overweight, it's like, eh, I'm not "wasting away" or anything, so it's fine. And to be fair - it's not like my doctor doesn't take my symptoms seriously or doesn't see the urgency in getting me better. It's just that there's this sense that my insides (which everyone agrees are in terrible shape) don't match my outsides, because the typical Crohn's patient is super-skinny and looks malnourished (because they usually are) whereas I look reasonably fine, even though my body is busy consuming itself because I am also malnourished but have more in the storeroom, so to speak. Yay invisible diseases. D:

Date: Jun. 13th, 2015 05:31 am (UTC)
ever_neutral: (Default)
From: [personal profile] ever_neutral

I'm sorry, man. You have suffered long enough. < / 3

Prayer circle one day you can eat any and all the food you want, pain-free.

Date: Jun. 13th, 2015 01:27 pm (UTC)
skygiants: Mytho from Princess Tutu cuddles a puppy while baby Fakir flails at villains with a stick in the background (tiny puppy)
From: [personal profile] skygiants
:( I'm sorry, that sounds like it sucks. I've got my fingers crossed that something is effective, and soon.

Date: Jun. 14th, 2015 08:53 am (UTC)
From: [identity profile]
Babu :( I'm so sorry. Sending you all the hugs, all of them. Prayer circle for you, darling. I love you muchly!!!!

Date: Jun. 14th, 2015 10:36 pm (UTC)
mcmegan: (Default)
From: [personal profile] mcmegan
Boo to crohns! I'm sorry your body can't seem to find a medication it likes. It's not fair that you can't enjoy food. I have troubles with dairy (and felt like I was going to die a few weeks ago after 2 slices of pizza), which sucks, but that's nothing compared to your GI woes. *Hugs*

Date: Jun. 15th, 2015 05:56 am (UTC)
wendelah1: (comfort)
From: [personal profile] wendelah1
This is such a bad time for you. I hope you can get into remission or at least show improvement.

The ensure is for the malnutrition but you aren't absorbing what you need from it. So frustrating.
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