Sloooooooow. Progressions.

I'm always amazed at how quickly flares appear and how endlessly long it takes them to be soothed away by heavy medication. Still feeling on toppa the world, though, and down to 5 mg of pred, the final taper - although watching the last presidential debate gave me a couple of sympathetic ulcers. Might have to abstain from media on the whole until the election is over.

In other news, my buttons arrived. Now if I can only summon the courage to wear them.

Yep, I do.

Slow progressions

HOORAY! Solid food has completely reentered and commandeered my diet once again!

Of course, this solid food includes a lot of boiled-into-pulp mashed/pureed veggies, toast, bananas, but there are moments. Last night I had a daring helping of pot roast and a completely irresponsible quarter-cup of bleu cheese cole slaw. I'm still being good about alcohol, though. There's a wine festival coming up soon -- I'm abstaining. I was supposed to go paint a faux masterpiece and drink wine in a semi-supervised setting, and I'm abstaining from that, too. (Okay, so that's more due to lack of funds, but still. Marking it in the ledger.)

A. and I are going to see Dust Up tonight! We should probably watch the Vice Presidential debate, but I'm pretty sure they'll be awfully similar, so it's all good.

Inappropriate happiness, here I come!

chemical structure of prednisone, from wiki and credited to Bryan Derksen

That's right, folks. It's prednisone time. Devil Pred. Moonface Maker. Instigator of any and all Popcorn Freakouts. That Tricksy Pharmaceutical Which Lures Ye in With Complectional Clearing -- aaand, I'm getting distracted. Which is probably a side effect, though, so even though I've only taken two doses so far, clearly any irregularities in my logic from yesterday on are due to evil, evil, pred.

I do so love that side effects list. It's such an amazing sell for the drug. You go from "headache" and "slight dizziness" to things like:

• changes in the way fat is spread around the body
• bulging eyes
• changes in personality
• extreme changes in mood
• decreased sexual desire

 Also, if you stop taking it too quickly, you can have changes in skin color and major, major salt cravings. Salt. Cravings.

I don't know if I've ever detailed the popcorn incident here for you guys, but let me lay it out for you now. Picture me - well, not yet as the above. Maybe instead as good ol' Nancy Crater, et al.

Captain's log, (star)date 2003-whatever-whatever. I'd recently graduated from undergrad, been diagnosed with ulcerative colitis, and moved up to northern Minnesota to live with A., who was then my boyfriend. It took me a while to find a proper gastro (aka ANY), plus I had some issues with medical records and the effective transfer of such from one Minnesota hospital to another. The biggest issue being that the new hospital system wouldn't take me on without a transfer of record.

(Let's take a moment to appreciate the key lesson learned, everybody: always get a copy of your medical records before moving. God fucking forbid you should have to depend on these whaddyacallits, these telephones and fax machines and other strange newfangled contraptions.)

Finally I got with my new doctor. We had the obligatory drug discussion, and because none of the lower level drugs had done a damn thing, I started taking Imuran. However, Imuran is interesting. It's an immunosuppressant that, yes, suppresses your screwy immune system, and obviously such a drastic thing takes a long time to really kick in: six months, to be exact. So to keep me alive, vertical, and functioning in the meantime, they also gave me a six-month prescription of prednisone.

Months one and two were amazing. The blood disappeared. The constant knifelike ache in my gut - gone, like it had never existed. I could eat real food again. Yay for good and all! Also, my complexion got really nice. I was glowing, and I assure you, I have never glowed before in my life. (I'm not sayin' I ain't Nancy Crater, I just recognize both my good and my non-glowy points.)

In month three, however, I started to show some of the less-than-stellar pred side effects. My effervescent face sank into mooniness. I was less and less able to sleep through the night, and I had some of the most bizarre and vivid dreams ever. I got snappish and emotional, and A. put up with it, probably since the memory of nice-ish me wasn't too far off.

Somewhere in one of those later months I had a bad day at work, and I decided that the best cure for a bad workday was a giant bowl of popcorn. Obviously. So I went home and made a beautiful giant bowl of popcorn with butter and salt, just brimming with deliciousness, and put a movie in and went back to the kitchen to get a glass of water and accidentally knocked the whole delicously-brimming thing off the counter. The bowl was ceramic, so it shattered. And I looked down at that popcorn, and I think in some part of my mind I was all, oops, ha ha, you dumbass, but that part was completely lost in what I actually did, which was that I pitched a fit, had a meltdown malestrom of shrieking/crying/swearing that made no goddamn sense at all outside of, I don't know, a massacre.

Luckily/unluckily for both of us, A. was home. He successfully managed not to freak out at me freaking out, pulled me together with something really blasé like, "Okay. It's popcorn."

Cue me crying, etc., somehow unable to deal with

"Yeah, yeah, I know. But it's popcorn."

(Reader, I married him.)

Shockingly, it was just popcorn. And probably that loaded phrase "popcorn incident" inspires some lurid imaginings. But really, it was just spilled popcorn.

In any case, post-absolutely ridiculous popcorn non-trauma, this story has a somewhat happy ending. I'm not likely to be on prednisone for that long of a stretch ever again. But the changes to my personality were so sneaky and slow, and so completely interwoven with the heavenly feelings of sweet, relaxed gut relief that I'm incurably wary of the stuff. I'll take it for a month, and try not to laugh at anyone's pain.

I probably will make popcorn, though. And soooon.

There's something about August.

I was digging through my older entries and realized that most of my flares happen in fall - August or September, to be specific. Since I'm feeling crabby, I'm tempted to blame them on my inability to deal with (or warm to, heh) the Texas heat, but it's a phenomenon that started before A. and I moved here. It's possible I don't deal well with any heat? Or perhaps there's something about fall that sets my gut a-squirming. Season of change? Forgotten back-to-school jitters? The harvest moon?

Things have gotten quieter on the intestinal front, but there's still some delightful cramping and blood going on. In addition, my thinking is getting typically insular, my vision is tunneling, and my fingers are dried out and wrinkly from too many trips to the bathroom and the subsequent required handwashings. I am eating homemade chicken soup (the real kind, not my cheap-ass speciality). I am throwing all my meds down the hatch. I am contemplating calling the damn doctor, who will be sure to put me the Devil Pred. This is all eerily reminiscent of last year, when I finally finished the damn taper at the end of October.

Hmph. Stupid flare. Stupid Pred. Stupid everything.

Urgh, the sequel

New mini-flare occurred this weekend, predictably, I suppose, after a week-to-month's buildup of too many consecutive baked beans, beers, mildly spicy stuff, popcorn, cheese puffs, Indian food, and two glasses of dark cola. I should be grateful it's not a flare-flare, a flare with teeth. But it's still kicking my ass into this week.

One of the hardest parts is eating. In addition to the emergency I'm on a self-imposed bland diet to shut down the crazy intestinal spasming, and what gets me irate about it is how difficult it is to do. And I'm not talking about the delicious food cravings that start after a few days in. It's really hard to cover your daily caloric requirements with applesauce, yogurt, rice, bananas, etc. Two dubious internet resources and a calculator show me I'd have to eat over ten servings of applesauce to make it. And forget about nutritional requirements, because they are not the priority.

In any case. After a couple of meals it feels like you're stuffing pillowfuls of glop down your throat, because bland diets are, by nature, bland bland bland. And you start to feel adverse to eating, and then because you're eating less anyway you start to feel weak and hopeless, and bland bland bland - er, blah blah blah.

Why yes, I am a ball of delight in times like these. Come back any time! Here, have a dog picture:

Puppydog would gladly eat all that applesauce for me. Yep, uh huh.

Luckily I have some good books on hand. After watching the Mark Gatiss BBC Horror thingie, I was reminded by Google that he'd also written some books, so I picked up The Vesuvius Club. So far it's ridiculous, scandalous, silly, exciting, mysterious, and almost exhausting to read -- but in a compelling way. I'm only 70 pages in, but I can recommend it that far wholeheartedly.

Pineapple pie in the sky hopes.

A couple of weekends ago, I decided to make a pie.



This was of course in spite of the heat. Hanging out inside with an oven baking pastry at 400 degrees for an hour while it's 100+ outside: totally worth it when there's fruit pie at the end.





Berry pie is not so stellar on the inflamed intestine, in case you were wondering. But I think that my weeble-wobble faux flare is finally, finally on its way out.

I was almost normal a week ago!

Remember when I said "the flare seems to be calming a bit" last week? Yeah. So much for that. Friday I came home from work to collapse, called the Gastro for instructions only to find out that a) her office closes on 1 pm on Fridays and b) her answering service does little more than a recording: tells you to go to the ER if you are having an emergency. Fine, said I, we'll just wait till Monday so we don't have to shell out a bunch of ER copay money.

On Friday I started feeling nauseated, so I stopped eating. Note to anyone who is more stupid that me: do not do this. Your body will keep shitting out blood even if you do not give it solid or liquid sustenance. Just so you know. While I can look back on my previous flares and say, yes, I already knew this, there's just nothing like stupidity living in the moment, is there?

Saturday I writhed around in bed all day and cried on the toilet. I had anywhere from 10-20 movements, and they were all scherzo and fortissimo. Sunday A. took me to the ER.

Albeit somewhat tearfully and with a prewritten cheat sheet, A. and I successfully negotiated that repetitive rigmarole of listing symptoms and medications and history of disease to every fresh set of scrubs who came through my room. After that, the ER staff was consistently great. They gave me morphine before sticking me for blood and urine (my first catheter! It was less than triumphant) and they set me up with prescriptions for the flare, the pain and the nausea to get me through the rest of the weekend.

I started on the Dreaded Pred and went to see my gastro. My gastro's waiting room is best navigated by ingesting a pain pill and bringing headphones; for some reason, nearly every doctor's waiting room or urgent care or ER I've been in recently is dominated by a loud widescreen TV. Less germs than magazines, I suppose? If you live where I do and you don't want to watch football or Fox news, you're better off wearing headphones, or bringing a book and a well-practiced ability to block out aural bombast.

Anyway. The gastro kept me on the Pred, and we've started the waiting game to see if it will chill out the flare up. So far, I'm still seeing a lot of blood, but the pain is much lower. The remembered pain and my anticipation of its possible return is worse. I also did a stool sample (something that really needs its own post because of all the fun ACCESSORIES that go with it) to see if I developed, as I thought earlier, c. Diff. No word back on that yet, though.

----------

Anyway, I look back on that flippant post from last week and all those lovely pictures of fresh vegetables and want to die of both shame and salivation. For maybe going on five years now, I've been reasonably normal. Give or take a few minor flares, I've been able to control this thing and eat like a happy, somewhat adventurous human being limited to the abundance of western hemisphere. I've been able to eat an amazing amount of food. Maybe I will get to again after this blows over.

That said, there is nothing worse in these days during and after a flare when you are drinking broth, eating farina, and drinking your nutrients (if you can even do that, you're lucky, I know) than the porn of food. Whether it's coming from television commercials, magazine ads, grand opening mail fliers from that new grocery store, or from inside your own twisted epicurean brain, it is hell, hell, hell.

Burgers. Bacon cheeseburgers. Tacos. Black beans and rice. Heaps of lettuce topped with fresh tomatoes and peppers and chunks of feta cheese. Bowls of fettuccine alfredo, or angel hair with rich spicy tomato sauce and meatballs. Neapolitan ice cream. Chicken curry. Egg rolls dunked in soy sauce. Sushi rolls with soy sauce and a little wasabi. Spring rolls. Mountains of homemade vegetarian won-tons. Stir-fried vegetables with cellophane noodles or rice stick. Kit Kat bars. Caramel sauce.* Apples. Lumpy homemade corn dogs. French fries. Onion rings with ketchup. Hot fudge sundaes. Corn on the cob drizzled with butter and salt and pepper. Oven-fried chicken. Corn bread with gobs of melted butter and maple syrup. Nachos with melted cheese. Cucumbers, carrots, broccoli, cauliflower, all raw, all dipped in ranch or bleu cheese or eaten plain and crunchy.

Bom-chicka-bom bom.

I'll be in my bunk the bathroom. For the rest of you out there, if you can eat? Eat. Eat. Enjoy it. Suck the marrow out of it - literally, if you like. But enjoy it.





*Neither that nor the ginger snaps materialized last week, I'm afraid. Unsurprisingly.

More flare food

The flare seems to be calming a bit. I can leave the house (i.e. the place with a reliable bathroom within sprinting distance) for more than an hour, I can make it to the bathroom at work without sprinting, I can even - dare I say it in a post largely concerning food and pictures of food? Oh yes - I can even fart again. You don't know what a pleasure that is until you lose it, folks. To fart without fear of pants-crapping is truly divine. Not exactly a G.I. Joe lesson, but one we IBD folks can carry throughout our lives and call on in time of need; like, say, someone does a aging Joe reunion movie sort of a la The Dark Knight Returns meets Bubba Ho-Tep meets To Riverdale and Back Again and in it Cobra Commander realizes he can finally achieve world dominance by stealing every last package of adult diapers and Imodium AD.

Anyway, I made more soup. These were a little harder on the gut than the chicken noodle, given they're comprised primarily of vegetables rather than broth, but the pureeing helped a lot. Also helpful: drinking a gallon of water or so with each bowl.

Both recipes are from The Art of Simple Food by Alice Waters, which I picked up at the library. If your library doesn't have it and you don't want to buy it, use Interlibrary Loan and get the most out of your local library. Ahem. To get back to the book, Waters has a lot of nice recipes, and a lot of good soup ones in particular. I made her Tomato Soup and her Leek and Potato Soup. I also made these after a regular eight-hour work day, if that helps. Although most of them are as it says on the can, simple, some of Water's recipes are more complex than others; but these two have really short ingredient lists and the chopping prep is the most time-consuming part.

A somewhat incomplete story told (mostly) in pictures:


Sautéing the leeks in butter.


Adding the bay leaf and thyme.


Adding the potatoes.

Unfortunately I got a little too hungry to waste time taking pictures, so that's all the documentation for the leek and potato soup. A. and I ate it over the week with toasted boule bread. Without further ado, here's the tomato.


I halved this recipe, so it only made two servings. Kind of a waste of time spent cooking, I suppose, but I'm not big on tomato soup and neither is A., so one meal is plenty.


Chopped onions and leeks.


Cooking with tomatoes, bay leaf and thyme.


Blending! I also ran it through a food mill after the food processor, to strain out the seeds and the peel. It was thicker than I would have liked; next time I'll add more water. A. and I ate this with grilled cheese sandwiches, milk, and another gallon of water.

The flare verdict for both of these was less than perfect. The leek and potato was easier on the gut than the tomato, but while I spent time on the toilet due to both them, I still felt more nourished than if I'd gone the chicken broth route.

Off to bake and cook the afternoon away. On the roster: ginger snaps, 60-minute rolls, and caramel sauce. I know, I know: why IS my flare lasting so long, you guys?

The many (vid) faces of Rowasa

The flare is definitely not going away. I called the doctor, who chastised me through her nurse for forgetting my appointment, and then prescribed a month's worth of Rowasa. (After clicking, scroll down for the amusing how-to pictures. I didn't know you were supposed to take your clothes off first.)

Anyway, yippee! If there's one thing I've missed these last three years, it's the good ol' mesalamine enema. Yay! But there really is no one way to describe my feelings on the subject, so I'll emulate Steve Martin, except I'll let Youtube do it better.


Folkloric

The description really matches the situation at hand. Well, mostly:
The classic tale of the brave little Dutch boy who kept his finger in a leak in the dike all night long, preventing the damage from spreading, and so saved his town from a devastating flood. Inspiring story of a courageous small boy.

Memeish

If you don't know what what it is, I can't tell. I suppose if I were feeling genuinely memeish, I would make my own vid to this and dance around in my nightgown, shaking up a dose for the camera.

Long term serious/mawkish

I'll make love to you. Because girl. You know I love you. And our love. It's all about putting it anywhere.

Aaaaand
The Conviviality of Daily Life

Yeaaaa.


During this flare, I've noticed that as the cramping and pain begins, I simultaneously feel a huge sweeping wave of relaxing weariness - like I'm about to pass out, except (hopefully. Jesus.) without the oxygen loss. It's both relaxing and creepy. Is this mind over matter at work? I've used a little sing-songy "Relax relax relax dumbass relax" in the past to chill out, so I guess it's possible that my body has been coerced into thinking gut cramps equal meditation time.

Time to go to the bathroom again.

I'm in ur kicchin, comfurtin ur belly

pic by elana's pantry, flickr

If you know me, you know that most of my favorite foods do not fall into the gut-friendly category. I like a lot of fruits and vegetables, I also like beans and coffee and beer, and I really, really like a regular ungodly amount of sugar. Unfortunately, this doesn't do me right when things are rolling Boadicea chariot-style on the intestinal front.

When I have a flare up, I usually drink a ton of water and do the BRAT* thing for a couple days, or I go the bland diet route.

Push it too far the wrong way, i.e. all broth and juice and no solid foods, and you can fast your way into a flare. How this happens, I do not know - I only know that it happened to me. To tone down the alarmism a bit, it's true that UC is different for everyone, so it's possible that you or someone you know with UC can fast happily and without any problems. That makes more sense to me; I would think that if the colon's getting minimal roughage, adequate nutrients and the same levels of medication, well, that should be one happy relaxed colon. But in my case? Not so, if the last time I did a planned fast was anything to judge by. Of course, I also attempted it while
A) planning a cross-country move
B) preparing for a honeymoon and wedding
C) graduating from my master's program
D) preparing for a weeklong visit from my family

So. Methinks it might be time to give the fast thing another go. Unfortunately, at the time of this writing, I've belly-flopped into another flare-up, probably due to consecutive colds, cellulitis, travel, and pneumonia, with a healthy ass-jab of antibiotics to top them off. I assume that my living in Texas is why I'm catching so many bugs; there's no harsh winter to kill things I'm used to having killed. The excess of antibiotics scares me more than anything, though. I have nightmares about Clostridium difficile sneaking up on me in a dark hall.

This is my first officially full-on bloody flare I've had since June 2009. That's pretty good, actually. Also good: I can review my comfort foods list and reexamine whether or not they still work for me.

So! What to do when you can barely stand up but you're damn hungry? You pour a giant glass of water, boil up some peppermint tea, lean against the kitchen counter and start channeling your favorite chef.

Mine:


Anyhoo.

Comfort Food Standbys
Warning: these are relative to how riotous my gut feels.

Soup is my favorite dinner when I'm flaring. This potato and leek soup is pretty tasty, although I usually tweak it into a simpler, less frou-frou version without the cream or the garni. Anything without a lot of beans usually steers me straight. The simplest, easiest one is, of course, chicken soup.


Emphatically Not A Jewish Mother's Chicken Soup
(aka Chicken Soup for the Cheap ass Soul)

This is probably the homeliest version of chicken soup out there. It certainly doesn't hold a candle to the elana's pantry pic above. But guess what? It's cheap. It's fast. You can take lots of breaks while making it to sit on the can. And that, my friends, is justification enough for me.

Heat a couple Tbsp of olive oil (or butter, or canola oil, or whatever you like for soups) in a large pot. Mince the hell out of several garlic cloves, or press them if you're lazy. Chop up about half a cup of onion. Chop up a carrot or two in thin pieces, and some celery if you have it. (I usually don't have any. My soup is probably the Food Network's worst nightmare.) Sauté the garlic and onion in the heated oil for a minute or so, then add the chopped carrots, celery and any other veggies you might want to add at this point. Let them sizzle for a minute or two, then add about 5-6 cups of chicken broth. I used bullion. Emulate me at your gourmet peril. Bring the soup to a boil and then turn down the heat so that it simmers, and let the soup cook for about 20-30 minutes or until the hardest veggies get tender. Add basil or oregano (or whatever other herbs you like), salt and pepper to taste, small pieces of roast chicken (if you got it. Again, I usually do not), and uncooked vermicelli in the last five minutes of cooking time.

Fill up your bowl, crumple onto the couch, and slurp your soup carefully and conservatively while your hungry dog/cat/fish/spouse looks on in envy.**

- Suggested side dishes and drinks: toast, crackers, a gallon jug of water, pots of Sleepytime tea.

- Suggested side viewing: The Warriors.

Ah, soup. But sometimes you need more than soup to convince yourself you're not dying of gut cramps!


Relatively Quick Homemade Applesauce

The relative speed of this sauce is determined by whether or not you have a sweet, willing victim who will cut all the apples for you. Also in this recipe, I require you to use a food mill rather than peel the apples. Said sweet, willing victim must also be ready to hop to and clean out the food mill after use. But it's really good, so try to find that special someone in your life.

Needed: tart apples (think pie), water, honey or sugar. That's it. Oh - you can add some spices if you like; I usually put in cinnamon and nutmeg. But that's it.

Cajole victim into cutting up apples into chunks. Put apples in a large pot and add a cup or so of water. Bring water to a boil and then turn down heat, leaving water at a simmer. Add honey or sugar somewhere through the cooking and stir thoroughly. Let the apples cook into soft fragrant mush, stirring occasionally and keeping an eye out for scorching. Add water when needed. Taste - if sauce tastes good to you, remove from stove and have your victim mill the sauce in batches to strip out the peels. If you have pretty red apples, your sauce will probably be a pretty pink. If you have brownish or yellowish reddish apples, it will probably be brownish. I've never made this with green apples. I imagine it would look rather bilious. But who knows?

- Suggested side dishes and drinks: Pork rinds. Just kidding - more water, more tea, more liquids.

- Suggested side viewing: The Blob. Obviously.


By this time, you're probably getting bored with all the water and all the minty herbally tea drinks, not to mention the trips to the toilet. Can't do much about that last, but I can provide some variety to the fluid.

Shirley Temple's Secret Sister Susette***
2 parts ginger ale
1 part orange juice
1 generous splash cranberry juice

No alcohol, sorry. Take a tylenol if you're desperate for some liver action. Stick a straw in this bad girl and enjoy!

- Suggested side dishes: ice cream or sherbet, if you can handle it. Yay, sugar.

- Suggested side viewing: Amélie.



Now I know what you're saying. "These recipes are worthless!" "They don't even sound good!" "I could have figured those combinations out." "I already HAVE figured those combinations out, and I have written a book of recipes, and you have blatantly plagiarized me." Er. Except that last one. It's a good thing I'm not interested in writing the Definitive Ulcerative Colitis Cookbook. I think that would be an awesome collaborative project, though, for people with more time and less snark.

But to close with a return to the flare-up, what are your suggestions for recipes? Any favorite gut-calmers?




<sub>*Bananas, Rice, Applesauce, Toast; or for some people it's Broth, Rice, Applesauce, Tea, or a combination of those, or some other things entirely. As long as you spell BRAT, apparently, it's acceptable. In that case, I'd prefer Beer, Raspberries, Apple Pie, Tacos.

**You don't have time to make food for THEM! You're SICK, damn it! WAAAAAALLOW.

***Susette might be illegitimate, but she's still a minor.</sub>

They'll fix you. They fix everything.

I watched Robocop last night, and the excessive violence and Ronny Cox managed to jam my digestion somewhere around the descending colon. A. tried to rub my back, and I did some stretches, but to no avail. This is really one of those interesting things about ulcerative colitis, and I believe it can show up with other digestive disorders, namely, the back pain. The last time I had major back pain, it was a herald for the ER flare. I did not get it, then. I didn't understand that the best thing to ride out a flare with is loads of water, sleep, light-light-light food and absolutely no stress. Ha.
It took me three days of struggling through work, coming home to loll on the couch with a heating pad, and spilling broth A. made me before I drove my ass down there, parked illegally and got a gallon of morphine.

Man, I'm as badass as Murphy. Or Lewis. They're both pretty tough.

Call me moronic, but I love that movie. Even better is (was?) the edited for television cut, with such FCC-appropriate gems as:

"You just finked with the wrong guy!"
and
"Ladies, leave." (original line: Bitches, leave. Why, Clarence! You've grown gentlemanly!)
and
"You're outta your freauhking mind!"

I wish you could buy edited-for-TV movies, just for the sheer hilarity.

But I do love that movie, even more so after being diagnosed, because though there might not be much comparison between a robotic cop and a library science student with ulcerative colitis, the idea of trading some of my organs for plastic or metal parts because I just won't survive or work right without them, well, we are somewhat alike. And that's my poor analogy for the day.

Plus, the fake news and commercials! Hilarious!

As for the back pain, that may be attributed to the pile of cherry slices candy I ate last night while watching the show. But you never know. I'll be watching this back pain closely, this time.