Adventures in Crohn's Land: Part 924

Guess what I had yesterday......

A small sampling of exchanges from yesterday's colonoscopy, presented without comment:

Trying to explain the art of anesthetization: 

Anesthesiologist: It's like tequila. After a few shots, you're pretty comfortable and happy, but after 10 shots we could amputate a limb.
Me: That's kind of a grim example.
Anesthesiologist, looking shifty: That's how we used to do it in the old days. (he was maybe 5 years older than I am).

Two anesthesiology nurses were wheeling me to the procedure room-they went down the wrong hallway first, so I naturally did a pageant wave to the random people in the offices there. When they wheeled me into the right room I was facing the wrong way, and they had to spin me 90 degrees, which is difficult when the room is filled with large equipment and monitors and wires. Another nurse was helping them. 

Nurse #1: Wheee! It's like a ride at Disneyland!
Me: With better drugs!
Nurse #2, under his breath: Probably cheaper, too.

One of the anesthesiology nurses was wearing a pair of clear goggles pushed up her head. 

Me, noticing: Um, I can't help but notice you are prepared with goggles. WHAT DO YOU THINK IS GOING TO HAPPEN IN THERE??
Nurse: Oh! I always wear these! Nothing to worry about!
Me: Squinting, unconvinced.
Nurse: You're funny.

Consolation prizes

 

waterwaterwaterwarter every day I'm hydrating

 

I've had a pretty rough few weeks. More specifically, a spectacularly awful week followed by a few weeks with patchy awfulness. I'm not sure if my medication isn't working anymore, or what's going on-and the only way to find out is to strap on a miner's helmet and travel deep into the recesses of my angry, angry colon. I thought I could get through 2015 without a colonoscopy, but the JOKE'S ON ME.

 

At the end of the awful week, I had a doctor's appointment, and my doctor wasn't impressed when I mentioned that I had broken my non-colonoscopy prep record for number of bowel movements in a day. That was not a good day, although I think I managed to watch at least 1/2 a season of OITNB in between bathroom sprints. During the appointment, I was crying nonstop, not in an emotional way, more as a weird side effect of being dehydrated. I don't know if this is a thing in general, but when I'm really dehydrated, my eyes kind of leak (ironic, no?). It must look really weird, to not having a crying face, or a crying voice, but just randomly crying eyes-I think my doctor was kind of wigged out. We talked about different treatment options, and at the end, I informed him that he needed to hydrate me. I believe my exact words were, "either you do it or I will find someone who will," which was kind of an empty threat because there aren't really neighborhood hydration pushers, although if there were I would totally hit that.

 

Maybe it was the calm, creepy crying, or just my general air of resignation, but he agreed. I totally got pity hydrated, and I will take that all day every day. That is one of the things I like about my doctor-I think he genuinely feels badly when things aren't going well for me. I also think he wanted to give me something, or do something, to make me feel better. Which it did.

 

You know what's fun? Trying to stick really small veins when a person's dehydrated. The office wasn't really set up for IVs, and so there was some general scrambling for an IV pole and supplies. The nurse who came in seemed vaguely concerned about the whole thing, which is never a good sign. She talked incessantly about the process of inserting an IV, and poured over my arms and hands looking for a good candidate: "don't mind me, I'm just going shopping!" Here's another fun fact: though I am in fact built like a cart horse, my veins are Shetland pony small.

 

Now here's where I get a little judgmental: as she was running her hands across own, I noticed she had a small tremor. I'm hard to stick in the best of circumstances, but I was tired, dehydrated, and praying the immodium would hold, and all I could think was fuckmefuckmefuckme. I showed her my one reliable vein, turned my head, and braced for the worst. She narrated the whole process, and I mean the whole process: "Ok, a little poke. I think I'm in, hold on, let me feel.....so far so good.....let me just check.....I'm going to push it in a little farther....wait.....I think I went through....yeah I can't get it in...." and on and on and on. When it was obvious that one didn't take, she went through the whole process again, looking over my arms (front and back), hands, elbows.....and then she tried again.

 

This one hurt worse than that last one-I've never had someone really shove a needle into a vein that forcefully (excuse me while I pass out even writing this). She kept up the narration this time, push, talk, push harder, until I finally told her, it's ok if you don't tell me what's going on! Which she ignored, and finally she gave up on that vein as well.

 

At this point, I was debating how badly I wanted the hydration. Like a lot of choices involved with this disease, it was a case of, do I want to feel crappy now, or feel crappy with additional crap in hopes that I might feel better in the future? Thankfully, the awesome PA had been observing this whole procedure and finally stepped in to bring in the ringer. Every medical facility has one-the chosen one, the vein whisperer. This PA wears funky glasses and calls everyone honey and sweetheart and gets away with it. She expertly managed the situation, calling in the ringer and gracefully excusing the current nurse without ruffling any feathers. The nurse seemed relieved to be let off the hook, and praised me for being a really excellent patient (by passively laying back and not moving? gold star!).

 

The ringer stepped in, and I could tell from the moment she stepped into the exam room that she was a bad ass. She was from another department, but you could tell she was used to this situation, even relished it. She had spiky silver hair and ice blue eyes, and moved with quiet confidence and grace. I told her that she was welcome to try any vein she wanted, but I wanted some lidocaine first-and that's when she pulled out two tiny syringes full of that shizz, with a gleam in her eye. I almost proposed to her on the spot. She selected a vein, and when I told her the previous nurse dismissed it as a poor candidate, she looked me straight in the eye and said, "well, she's not me" in a gravelly voice.

 

I'm not really attracted to the lady folk, and this could have been the dehydration talking, but I kind of wanted to make out with her a little at that point. Now, do you think she got it in? She fucking got it in, of course she did. It did take quite a while, as she went at a glacial pace, and apparently got blood all over the floor and my arm. But she left with a big smile on her face and put a big one on mine. Rowr.

 

When I get rehydrated, there's a point where I can feel everything unclenching, relaxing. My headache disappears, I feel calmer. Sometimes a girl just needs a little pity hydration to perk her up.

 

I'll have the colonoscopy next month, and I hope Gatorade and good old H2O can control everything until then, but if not-I know just who to call.



Well, Hello Sailor!

So I says to Mabel, I says.....

 

 

So in case anyone still reads this blog, you might have noticed I took a tiny break, just a few days off to relax, kick back, eat some Milano's, watch a little Lifetime....oh right. I TOOK OFF A FUCKING YEAR. I avoided this blog for a year, and now I'm back and swear-ier than ever!

 

Sorry about that.

 

The absence, and to a lesser degree, the swearing.

 

Things were good, things were bad. I was happy, I was sad. I met a cad, his name was Vlad. I could go on like this for days (don't be mad).

 

As is so often the case with my colon, I had good months and less good months; during the good months, I promptly forgot about the previous months and went about the daily business of living, and when things got worse I would actually be a little surprised, as though I hadn't experienced the exact same delightfully life-inhibiting symptoms 4 or 6 or 8 weeks before.

 

I'm sure this is some complex coping mechanism, or simply self-sanctioned colonic amnesia. Either way, each time things take a turn for the worse, it's like a little betrayal, instead of something that I should definitely be expecting four years (!!!!) after my diagnosis.

 

After failing two different blood tests AND a super fun stool test (and by failing, I mean overachieving in the inflammatory markers department), I'm going to change my meds around this week in hopes of turning down the drama in my AAC. I would say "with the goal of re-inducing remission," but remission is a word that I'm not really comfortable using with my Crohn's. Remission seems to indicate a cessation of symptoms, a return to normalcy, a complete reversal of disease. I know that's a very black and white way of looking at it, but since I was diagnosed I've never had that kind of clear cut difference between disease and.....not disease. I just seem to have varying degrees of disease activity.

 

It's like a pot simmering on the stove. Sometimes the heat gets turned up and the pot boils over, and sometimes it just simmers away in the background, but no one ever turns off the stove.

 

I was at the eye doctor the other day, dealing with some fun inflammatory eye problems (thanks Crohn's!) and I was asking him if the increase in medication might help with the inflammation in my eyeball. His response:

 

"I think it might. You know, some people are just really susceptible to inflammation. Inflammation from your Crohn's, inflammation in your eyes, it's all just inflammation. You just have a lot of inflammation going on, so lots of things get irritated. You just have a lot of inflammation going on. Inflammation inflammation inflammation inflammation inflammation inflammation inflammation."

 

Just kidding about the last part, he didn't really say it, it's just that after the first part I kind of tuned him out and he sounded like that teacher in Peanuts. Also, thanks for the pep talk Doc! This is why I don't feel guilty for stealing eye drop samples from your exam room.

 

I had a really good two months before April (and now May). Even a few good days will lull you into a false sense of security, so imagine what two months will do. All of the work you do in those good months, all the progress you make and the positive steps you take in your life, grinds to a halt. I was beating myself up the other day for not pushing through this kind of inertia that takes hold when I'm not feeling well, and I realized that along with the symptoms comes exhaustion, a kind of exhaustion I just settle into now. I just hole up in my bed with my cell phone, good magazines to take with me to the bathroom, six different layers of blankets (for the night sweats, when I get too hot and then when I freeze because I'm covered in sweat and have kicked half of the blankets off the bed), and an easy sense of resignation.

 

That's what I'm working on now. That's what I've been working on for the past year, when I haven't been blogging. How do you plan a life around an unknown quantity of good days, and how do you push through the inertia, the resignation, the self-defeat that so easily invades the bad days?

 

I haven't figured it out yet, but I'm trying.



Post #118: Colon fear

ooooooh, symbolism

Oops, there goes another month between posts. To be fair, I've had two colds in the last two months, but an excess of mucus does not impede my ability to write. That would be laziness (or forgetfulness, or both).

Tonight I am thinking a lot about fear; more specifically, colon fear. I've dealt with my fair share of anxiety; I know how the body feels when it panics. I know what rational thoughts to tell myself to calm down; I understand that just because something feels scary, it is not necessarily so. Repeated exposure to anxiety producing situations have allowed me to (somewhat) separate the feelings from the reality. It took me years of, for lack of a better word, desensitization to be able to attain this perspective. I've had an anxious brain my whole life; I've had an anxious colon my whole life; but I've only had an ANGRY colon for a few years. I used to think that fear was fear was fear, but lately I'm realizing that colon fear is different. I'm not desensitized to it yet. You would think that after a year or two's worth of daily cramps and pains and other symptoms I would stop mentally packing my hospital bag every time I spend an agonizing hour on the toilet; but (confession time!) I still sleep with a phone next to my bed and a sports bra and sweatshirt by the nightstand, should I need to get dressed in a hurry in the middle of the night. Colon fear is still very real for me.

Now that I've pretty much concluded that my new "normal" isn't very normal at all, I've been putting out feelers into the real world, trying to figure out what I want to do next and how I can balance the unpredictability of my colon with the needs and demands of the rest of the world (friends, employers, etc.). I've been thinking about what I want to do, and what I can do, and I've come to realize that my colon fear has been clouding and confusing my conclusions.

I heard from an old friend today, who has been as understanding as possible about my AAC and the limitations it places on my life. Hearing her voice on my voice mail made me smile and think of the hijinks that would ensue if we lived in the same city. But we don't. I rarely see her, and that sucks. There's a reunion coming up, and a lot of my friends will be there, and part of me would love to go, but then colon fear rears its ugly head and my mind is inundated with the unknowns of travel, the lack of control over food and bathrooms and transportation, the sick people on the airplane, being away from my doctor and a hospital system I'm familiar with.....the list goes on and on. In any given week I have a bad day or two. How does that look when I'm thousands of miles from home?

The reality is that people with Crohn's don't cloister themselves into hermetically sealed living pods (I wish) away from all of the unknowns of the world, from flu-stricken seatmates to closed bathrooms to problem foods (what if all they served at reunion was lettuce!? ahhhhh). I've been trying to stay in the proverbial pod, and it feels safe, but really it's a prison of my own creation (see illustration above). Part of me wants to break free-to live life with reckless, germ infested abandon-but the colon fear wraps itself around my brain, whispering consoling thoughts about missing life's events and doling out a never ending supply of hand sanitizer.

Someday, my hope is that colon fear will just become like any other fear, something to be considered and put in its place. For now, though, it seems too large to conquer. The catastrophes it promises still seem possible to me. Pre-diagnosis, I was always feeling like I was waiting for the next bad thing to happen, for the next shoe to drop. At this point, I've been hit in the head by any number of falling footwear, and I can't shake the fear that they will keep falling and falling and falling.

And it's that thought, that fear, that specific colon fear that will keep me grounded and away from some of my very favorite people in the world. When it's all typed out, plain on the page, it really does seem like a lot to give up.

Post #116: My holly jolly colon

Get in my face, you delicious little sugar grenades. 

Late night, 3 a.m. Awake and in pain. Sound familiar? This, my friends, is the worst kind of SSDD. 

I drenched the sheets with sweat. I remember, when I was trying to lay perfectly still so that I wouldn't move and make the pain WORSE, that I seemed to be sweating between my toes. Pain twisting my insides, shaking, forcing myself to take slow, measured breaths, failing and hyperventilating a little, and this is what pops into my head!?

Toe sweat: is that a thing? Do you sweat between each toe? Are there sweat glands down there? Is it weird to have sweaty toes? I mean, I always think of feet being sweaty, but not the toes, really. Is each little space between them like an individual armpit? Hmm. 

All weekend I baked (6 different kinds of cookies, in your face MARTHA), and then ate cookies and made myself sick. After a particularly sugar filled binge yesterday morning, I ate a veggie filled lunch to compensate. So, sugar or carrots? Cookies or zucchini? Peanut brittle or celery? What exactly set off my AAC? Hard to say. 

Not that it matters, whether it was the cookies or produce, when you're in bed at 3 a.m. sweating between your toes. 

But oh, that familiar holiday food paradox. I'm talking about the way the holidays (I'm looking at you Thanksgiving and the entire month of December) trick you into thinking that for some reason you DESERVE to eat real food during this specific time period, as if the unwritten (and unknown) laws of your tricky colon suddenly don't apply when the world is decked out in pine boughs and velvet red ribbon and holiday fucking cheer. 

It doesn't matter what your colon did yesterday, or the week before, because all of a sudden it's THE HOLIDAYS and you should let yourself enjoy that cookie, that candy, that giant roasted turkey leg (or whatever). Come on! You're around people who can eat whatever they want, and you soooooooooo want to be like them. The urge to "pass" as a normal eater is never so strong as during this particular season, so you let down your guard a little, relax your strict food rules, and indulge, as though hypnotized by listening to "White Christmas" one too many times. 

You swap Christmas cookies, and go to festive holiday lunches, and sample a few too many of the treats that you bake for other people. And then at 3 a.m., the pain comes, and the natural conclusion is that you DID THIS TO YOURSELF. This notion is further reinforced by the first thing people say when you tell them about your latest setback: "Well, was it something you ate?"

Nothing like a little internal (and external) food shaming to keep your sore colon company!

Here is what I know: my colon does this sometimes, and it doesn't matter what I eat. But it's hard not to draw the reasonable conclusion, especially during this season of unrestricted, mindless eating. I'm not immune to the lure of sprinkles, and I'm a sucker for stuffing. Guilty as charged! But this was not my fault. Fistfuls of Christmas cookies didn't help the situation, I'm sure, but the colon has a logic all its own. 

So now I'm sitting here typing and sipping my meals through a straw. I did have a pretty good run: I managed to swing Thanksgiving, and some of December, before my body got up and slapped me, reminding me that ultimately this is my reality, this 3 a.m. pain, not those few days of gleefully pretending my colon was the same as the other girl's. 

I can (and will!) enjoy the rest of the season, the first snowfall and the exchanging of presents and the visits from family. But now, as pain throbs in my side, I will do so with my mouth closed and my guard up. Depending one when the pain lessens, I might be eating soft foods till New Year's. Like it or not, that's just the reality of the situation, my situation, the one that involves an angry and unpredictable colon. I didn't ask for or cause this (repeat to myself a thousand times), and nothing takes the shine off holiday festivities like a bucketful of Prednisone, so I'll be taking it easy. 

And while I'm being kind to my body, I'll try to remember to be a little kinder to myself, and remember that this season can still be celebrated in a way that doesn't involve the massive consumption of butter, sugar, and eggs. There is, hopefully, seasonal happiness beyond the cookie jar. 

Post #114: In the business

Welcome to my office. 

Yesterday some good friends who live out of town came to visit. Sometimes, with old friends, I'll get portals into what my life was like pre-AAC-little windows into who I was and how I was before my life was overtaken by Crohn's. That last part sounds melodramatic, and it is, but it's also pretty accurate. 

My friends let themselves into my house and kicked off their shoes, raiding the fridge before grabbing my blanket and making themselves comfortable next to me on the couch. My cupboards are a showcase of beige gluten free simulations of real food, but I managed to find some ancient girl scout cookies in the freezer, which seemed to suffice and prevented me from feeling like a total failure in the hostess department. 

As we sat around and caught up, a weight fell from my shoulders, and for one brief moment I got a glimpse into what I had before, and what I'm missing now. Easy camaraderie with people who knew me before my AAC came out in full force, and know that I'm not really "like this." People who knew me from a time when I was more social and adventurous and funnier and happier. I was never much of a risk taker, never the life of the party-but I was not what I am now. I feel like I need to be reminded of that, by seeing that old version of myself reflected in the memories of some of the people I know best. It's a kind of gift, to have that easy report, with people who know that I am more than my symptoms and disease and don't treat me differently than they did a decade ago. 

I was catching them up on my latest weird medical testing, and one of my friends, who works in a doctor's office, started discussing a bunch of diagnostic procedures. She was unsure of the difference between two procedures (that I've had), and as I was explaining the differences she laughed and said, "I knew you'd know! You are in the business, after all."

That one little comment, offered without malice or judgement, jolted me out of the portal and yanked me back to reality. 

I realized that my AAC, my illness, was now an established part of our shared timeline. It was, in their minds, what I do now. It was my business, my specialty, my vocation. And they're right. 

I'm in the business because I spend so much time around doctors and nurses, and undergo lots of testing, and allow so much of my daily thought process be devoted to thinking about (ok, obsessing over) my disease. I used to have a different business, a teaching job, but not anymore. I'm in the business because I try to be an educated patient and make the best health decisions for myself, even though I feel like I fail a lot of the time, on both fronts. 

I'm in the business because I don't have a choice. 

My friends still love me, and accept me, new business and all. Still, I don't want this to be my job. 

I'm coming up to my two year diagnosis date, and this whole time, through all of the testing and treatments and medications and special diets and new plans and failed plans, I've been waiting to feel better. I've started to, a dozen times, but it never seems to stick. So I've stopped making plans or trying to structure my life in any way that involves responsibility, because the only thing worse then letting other people down is hating yourself for it. 

But sometimes, it hits you in the face, how other people see you. You see through the portal-how you were-and you miss parts of your old life. You see your present, and there's a lot you'd like to change. And since you can't see the future, you put a smile back on your face and eat a girl scout cookie (mistake!) and reminisce, hoping hoping hoping that at some point your AAC stops being your only business. 

Post #113: SSDD

It's less offensive with a floral background. 

Welcome to the story of my life: same shit, different day. And I don't mean that literally, of course, because we all know my bowel movements aren't nearly that predictable. 

Last week, I fell asleep on the couch, nbd, when I woke with an alarming, stabbing, tearing, searing pain in my side. Last time this happened, almost a year ago, I was so alarmed that I went to the ER-I had never experienced pain like that before, and it scared the hell out of me. I thought something was torn or twisted or ruptured, and I was both relieved and frustrated when the doctor on call shrugged his shoulders and I walked out of the hospital with a clean CT and no answers. This time, same pain, but you know what? 

Same shit, different day. 

I was alone, and the phone was out of reach, but I calmly told myself to breath through the pain. Some insipid morning talk show was on, and I tried to listen to distract myself while feeling like someone was shivving me in the intestines (can you use that as a verb? As in, "to shiv?" I'm not down on my prison grammar). When the pain lessened a little, I slowly rolled onto my back, then onto my other side, and then sat up. The pain got better. I called the nurse out of habit, but I had no intention of going to the ER. I didn't expect her to have any insight into the problem, and she didn't, and I had already resigned myself to welcoming back my old friend, le liquid diet. 

Same shit, different day. 

That first sip of protein smoothie tasted like sweet, sweet defeat. 

The recovery from this....whatever it was (the doctors don't know either! wheeee) is going more quickly this time, and I've been adding one or two solid foods a day, waiting to see how my AAC will react to the softest, blandest, safest foods imaginable, dealing with the nausea and pain and discomfort that inevitably comes after eating something innocuous (like eggs). Nervously trying new foods, hoping not to wake up in pain or obstruct. 

Sound familiar? Because that's a big, heaping helping of same shit, different day. 

I went back to see my old doctor, and we made up a little-I didn't cry, we traded circumcision jokes, it was all good-but he had no idea what was causing my pain, and little advice about how to proceed. 

You know where to find that book in the library? It's filed under same shit, different day. 

I'm now waiting for insurance to approve the next test that might give me some answers, the one the new doctor ordered. I saw him a month ago, he submitted the claim, something went wrong, it was resubmitted, and now it will probably (best case scenario) take at least another two weeks to approve.

You know how to get there? You just merge onto the freeway, and take the same shit, different day exit. 

Oh, and this test? I have to swallow a tiny camera, which may or may not get stuck in my AAC. It has a 5% chance of requiring additional intervention/emergency surgery, and I have to prep like I'm having an actual colonoscopy. My doctor actually said it wouldn't be such a bad thing if it got stuck, because then they would know where the problem was. 

Hmmm, this room is a little musty. Maybe I'll light my same day, different shit candle. 

So here I am, back to where I was a year ago (minus the steroids, thankfully). I'm uncomfortable, stressed out, and waiting for a test that may or may not yield any useful information, but which will surely be a pain in the ass (literally and figuratively) to go through. Insurance is being difficult, I'm playing phone tag with doctors old and new, and I obsess and worry over what I eat, which makes mealtimes AWESOME. I wait for pain, and I wait for tests, and I wait for answers. I sleep a lot, and the days pass, and I try to find happiness in small things. Every day I turn into myself a little more, and reach out a little less. 

You all know the chorus: SAME DAY, DIFFERENT SHIT. 

I want a new song. 

Post #112: The results are in....

Thanks Doc!

Last week, after hounding my nurse/her assistant, I got back the test results I've been waiting for.....and they're normal. I was hoping they were not. I was hoping to get a justification to switch meds and a piece of paper to shove in my tiny doctor's face so I could say, HA! There is something wrong! I was right, you were wrong, and here's the proof (drops mic). 

Fucked up, no? 

To wish that you were, indeed, actually more sick so that your doctor will listen to you? Now I feel kind of defeated, like I made such a big fuss at the last appointment about how something isn't right, and the medicine isn't working, and now one tiny number on a lab slip has rendered my objections worthless.

Ever since I got the news I've felt like a half deflated balloon, the kind that floats dejectedly halfway between the ceiling and the floor. 

A sad balloon. 

I get teary eyed for no reason, and I'm having a bad colon week. Everything seems harder than it really is, and it turns out that it's much easier to hide in bed or watch bad TV than confront the realities of my current circumstances. Realities that include the fact that my doctor may have helped me as much as he can, or that I feel like I have hit a mark where people are essentially expecting me to just get on with my life already, sick or not. 

I see a new doctor next week to get a second opinion. I'm seasoned enough not to get my hopes up too much; I'm not expecting this guy to have all (or any) of the answers, but it will be interesting to hear his thoughts. It certainly can't hurt to have another pair of eyes pour over the paper trail of my sad colonic adventures. 

And while I wait, I will try to focus on the things that don't suck. The weather is getting cooler, which means it's time to break out the fleece. My AAC is tolerating pho again (wooo!). And, my city got a new radio station that plays the 90's hits I remember from 6th grade dances; I mayyyyyyy have almost been late for an appointment last week because I was rapping along with Salt N Pepa. I defy you to be depressed when Shoop comes on-it's just not possible. Seriously. 

Also, and most importantly, I'll keep reminding myself that no matter what any doctor tells me, I feel how I feel, and that can't necessarily be quantified by a lab. After that last appointment, I need the reminder. 

Post #111: Late night lightening lessons

GAH. 

Last night, a big storm swept through, and all day the news channels were wetting themselves with excitement over the impending atmospheric drama. Consequently, I spent the day in a state of agitated expectation, awaiting the coming fireworks show that would play out in the sky above my house. 

I really don't like thunder and lightening. They unsettle me. We get strong storms here, and the thunder is so loud the house actually shakes and quakes with every giant BOOM. I know some people love thunder storms; they throw open the windows so they can smell the electrified air, feel the wind kick up, watch every flash and strike and have their hearts beat with an elemental excitement instead of fear. I am not one of those people. 

I was alone in the house, and determined to act like a freaking adult and get on with my life. I was in bed reading-distracted, as the heavy rain began, when it happened: a totally unexpected, LOUD, house shaking body rattling clap of thunder. I literally jumped up in bed and grabbed my heart. The shock of it all was probably more frightening then the thunder itself, but my first instinct was to turn off the light, roll into a ball beneath the covers, and scan the horizon for future lightening strikes, so I could count the seconds and miles between light and sound, to gauge when the next BOOM might hit. 

I was trying to control my breathing, trying to get my heart to stop sprinting and return to a peaceful stroll, when the lightening strikes started coming closer the closer together. It looked like a giant strobe light had been installed in the neighborhood: light/dark/light/dark. I curled into myself further, already painful joints pulled closer to the body, stomach tight and nervous. 

The lightening kept coming, as did the thunder-closer and then further away, or far away and then closer. It was hard to gauge where anything was happening. I was taut, waiting for the next onslaught, but it was difficult to determine a rhythm. Better to stay ready, I thought; better to stay small and stressed so the scary things won't be so scary when they happen. 

And then, a tiny voice in my head: you can't control this. Any of this. 

You can't control this. 

You are not in control. 

The thought was like a shot of Valium. Instant calm. I unfurled. 

The more I thought it, the calmer I felt: I can't control this. Come on loud noises and bright lights! I can't control ANY OF THIS. I am not in control. 

I turned over and stopped watching the storm, and as the light show played out across the walls of my darkened room, I fell asleep. 

I woke up cold, tangled in damp sheets, only to fall back asleep and  wake up for the same reason. Night sweats. Was it the storm or the Crohn's? Hard to tell. 

Either way, I couldn't control it. 

Post #110: All by myselfffff......

But Brad! I thought you.....CARED for my colon!

I think I maybe just broke up with my doctor. 

A few things I know for sure: 

1.) During this appointment, I bypassed the ugly cry and proceeded straight to the bawling, hiccuping, snotty sob-attractive!
2.) I don't feel like having to fight to be heard or understood anymore
3.) I felt stupid and foolish for DARING to have a different opinion
4.) I need a second opinion

I came into the appointment prepared, as always, with a nice little information sheet and list of questions. Things started off as usual, but at a certain point I found myself tuning out the doctor's responses as an angry chorus repeated in my mind: LISTEN TO ME! LISTEN TO ME! WHY ARE YOU NOT LISTENING TO ME?

I told myself I wouldn't be combative, that I would be able to have a polite, dispassionate, constructive discussion of my disease and current symptoms. But guess what? I have no polite, dispassionate, or constructive feelings towards my health at the moment. I wanted to be noticed, and heard, and most importantly, believed. I left feeling pitied, discounted and embarrassed for having been so emotional. 

I wish I could have held my own during that appointment. I wish I could have had a rational conversation with my doctor without the hysterics, because crying in front of medical professionals makes me feel weak. But I wasn't able to, and halfway through the appointment I just gave up. I kind of dumbly nodded my head and said I understood, because I wanted it to be over. I didn't want to fight and argue and push back against anything. 

I don't think I have a bad doctor; in fact, I think I have a really good doctor.....clinically. But as I managed to spit out during the appointment, "I am more than my test results." The sum total of my experience cannot be accurately captured in a relatively clean colonoscopy or unremarkable lab results. I wish he could understand this. 

Finally, he asked if I wanted a second opinion, and I said I thought it was time. 

I could go into more of the specifics of the appointment; how he did, indeed try to blame my symptoms on my IBS instead of my IBD; how he recommended a dietary approach like he invented the fucking diet I'm on; how he invalidated my opinions because they were things I just "knew" and couldn't prove, or because "time of onset doesn't equal causation;" how he said he was sorry, and I believed him. 

It doesn't really matter. I cried all through the appointment, and then all the way home, and then in bed a little under the covers. I felt alone and disappointed and emotional and angry. 

I don't have the energy for this. I don't have the energy to advocate for myself with an entirely new doctor at a different hospital. I don't have the energy to start all over again, and repeat tests and conversations and spit out a list of symptom after symptom. I could stay with this doctor; things didn't end badly enough that there is irreparable damage, but it was certainly a turning point. I could pretend nothing happened and continue on, but we would both know things were different. 

I don't have the energy to push forward, but I also don't have a choice. 

Post #109: Welcome Home!

Does hamburger guy kind of look like Roger Ebert? Maybe not. 

Thankfully, my colon was pretty chill on vacation. 

It waited until I got home to freak the f-out. Hooray! 

This is just example #1596 of the complete mindfuck that is Crohn's. After a relatively stable month, where you eat out all the time, and tolerate a wide range of foods, and have no pain, suddenly: BAM! Your angry colon strolls into the joint and bellies up to the bar, orders a few shots of tequila, and TEARS THE PLACE DOWN. 

Try to limit my stress, you say? Try to stay positive?? YOU TRY STAYING CALM WHEN YOUR COLON IS UNPREDICTABLY ANGRY. Also, bite me. 

It has not been a good week. Last week was worse. 

I am so, so tired of all of this. 

I got some blood work done, to see if I can figure out why my AAC is being an AAC, but really? Those numbers won't give me much clarity. I have a doctor's appointment next week, and I doubt I'll learn anything new there either. I have been avoiding going back, first  because I was feeling better, and now because I'm feeling worse......it doesn't make sense to me, either. I don't want to see my doctor, because I don't want to hear what he has to say. I don't want to get my hopes up. I don't want to hear anything that will make me more afraid or stressed out. I don't want to hear any of the familiar platitudes, or get fed any of the familiar lines. For instance: 

If he says I'm in clinical remission.....

If he blames this on my IBS (lucky girl, I have both!).......

If he tells me to give this medicine more time........

I will probably slap his tiny doctor face. Or leave. Or, realistically, start to cry, because I am too tired and frustrated to do anything else. 

I was going to try to write a funny post about how I always read food magazines in the bathroom (true), but I don't have the energy. I had a bad colon day. 

And judging from the state of things down under, I might have a bad colon night. My AAC is on another bender, soused to the gills and looking to start a fight. 

And there is nothing I can do. Welcome home, indeed. 

Post #105: Dispatches from the land of wheat

This bread is sad, much like my colon. 

I spent over an hour wandering through the aisles of my local hippie mart, stocking up on bags of eight dollar gluten-free cereal and quinoa porridge, wheat free English muffins the weight of hockey pucks, and more produce than I have consumed in the last six months combined. 

I came prepared with double sided lists; I scrutinized each label for offensive additives, valuing purity of ingredients over taste and texture. I circled round and round the bins of dusty flours, spent far too much time choosing nut milks, and was so overwhelmed by the whole process that I didn't even think to head over to the cosmetics section for an impulse purchase (per usual). Exhausted, I loaded my purchases into the car and drove directly to the nearest pizza place. 

As I was somewhat guiltily eating my margarita pizza (sans cheese), I chose to ignore the shiny new wheat free foods banished to the dark corners of the trunk. As I sit here now, head pounding, body flushing, trying to keep said pizza down, three things are abundantly clear: 

1.) I am more afraid of this new diet experiment than I thought
2.) Emotional eating doesn't go away, no matter what your current relationship with food
3.) In some ways, I am more afraid of things changing (despite the possibility of improvement) than things staying the same

Isn't it interesting that when there is stress involved, the body overrides the mind's innate wariness about food and does a face plant into the nearest source of fat and carbs? In this case, food was both the cause of and (temporary, stupid) solution to the problem. Anxiety about changing my diet led me to eat a food with a high likelihood of making me feel like shit (mission accomplished!), all to avoid thinking about the other new foods I will be eating on Monday, which are healthier and probably less likely to make me ill. It's all very confusing. 

To put it another way: I am worried about eating almond butter when I have spent over a year ingesting/injecting a number of powerful immunosuppresents and other scary drugs with page long lists of potential side effects. 

It makes no sense. I know this. 

I could chalk this all up to nervousness about "rocking the boat," of taking any chance at altering the current, relatively stable (or at least predictable) condition of my bowels. I could say that I was worried about placing all of my hope in another plan, when other plans have failed so miserably. I could admit that I worry about making things worse, or messing up my body somehow, though the latter is unlikely. 

Those things are true, but I think the real reason I'm anxious is that this is the first proactive step I've taken beyond my doctor's guidance in quite some time, and as such is an acknowledgment that I want more, from my medicines, from my diet, from my life, from myself. 

It feels risky to not want to settle anymore. 

Especially when I know that more, in whatever form, might not be possible. 

And so tonight, as I try not to hurl, I am going to remind myself that any relative risk is worth any potential benefit. Just like I have to talk myself into trying a new pill, I will talk myself into this. At the very least, all of the new foods sitting benignly on my dining room table, sequestered from the rest of my pantry, are unlikely to give me nigh sweats, high blood pressure, joint pain, or tremors, and there is some comfort in that. 

Post #102: Great Expectations

Well, seeing as how you're already all gloved up.....

Hey, guess what I just had? My second colonoscopy of the year! Whooo. I seriously should enroll in some sort of "frequent flier" scoping program. Perhaps there is a punch card of some sort? A 10% off coupon for valued customers? A BOGO promotion? 

Everything went smoothly. I didn't talk to my doctor afterwards, but I did talk to the nurse who was in the room the whole time, and she said my AAC looked "ok." I read on the paperwork that he took some biopsies as well, which I knew because I had that delightful "kicked in the gut by a tiny, angry shetland pony" feeling in my gut. 

The day of the procedure was my Crohn's med injection day, and I read online that giving yourself the shot standing up was easier/less painful then doing it sittting down. Ha ha, THANKS A LOT INTERNET. I had a golf ball sized lump that is now a golf ball sized bruise, a constellation of green and yellow and purple dots staining my abdomen. My eye is drawn to it every time I step out of the shower. It looks about as violent as giving myself the shot sometimes feels. 

Sorry if this post feels scattered, but so does my thinking around this. I haven't blogged for a while, and it feels a little awkward. It's not like anything changed, in terms of my AAC; increasingly, I'm just getting sick of talking about it. About the food I can't eat, the weird procedures, the night sweats, and the joint pain (that's a new one)-how I feel like an 80 year old women when I come down the stairs in the morning, gripping the handrail and saying "ow. ow. ow." under my breath as my swollen ankles pop and creak in protest. 

Depending on the results of the colonoscopy, can I say that this medicine is working? Is it worth the side effects? And the most important question of all: 

Is this as good as it gets? 

I'm trying to wrap my head around it. I've spent so much time invested in the idea that I was going to return to a place of normalcy, where I felt healthy again. Where I felt good, and able, and strong. I'm not at that place; sure, I may be a few steps past where I was at my worst, but I didn't think this was the big "tah dah!" stage of this whole process. I'm not a shiny, perfect example of a successful "after;" maybe after a year and some change, I thought I would be. That probably wasn't a reasonable expectation in the first place, but it's what got me through. 

I guess I just don't know what I'm waiting for anymore. This might be as good as it gets. And if it is, how do I stop waiting around and start moving again? How do I progress when I feel like I'm still waiting to be healed? How do I shake the feeling that I should wait around until things are better? That is my inclination, but it maybe be time to reassess. 

All of this is floating in my mind, a perplexing stew of thoughts and hopes and feelings and fear. There's a little determination in the mix, a little hint of impatience. But mostly a dull confusion that makes everything hazy and difficult to discern. 

The recurring theme in this blog, and in my life, is a desire for clarity. I don't think colonoscopy #2, as delightful as it was, will give that to me. 

I just don't know how to wean myself off of expectation. I project my hopes onto every blood test and invasive procedure, looking for medical markers to guide me on my way, to help me make good choices, the right choices. Clear signs that say, definitively, YES! Stay on this medication or NO! Try a new one. 

I end up with a lot of maybes, and at this point, as you can probably tell, I'm just so freaking unsure of which way to turn. 

Post #101: It's not me, it's you

It it's on candy, it must be true. CANDY DOESN'T LIE.

Dear tiny, tiny doctor: 

Last week, we had a frustrating meeting. You're frustrated, I'm frustrated, my AAC is frustrated. 

Frustration all around. 

I understand that you are human, and as such are entitled to an off day. I know you can't snap your fingers and fix all that is wrong with me; my only requirement is that you keep trying. 

I've encountered this behavior before, from previous doctors. I can recognize the signs: the impatience, the shortness, the annoyance that the treatments aren't working. The bland admonishment to "hang in there and give things a time to work out." 

Ordering test after test after invasive, pointless test. 

Trying to parse and farm out my ailments; telling me you can only treat my gastrointestinal symptoms. 

Telling me you "get it" and that "you're frustrated too."

I'm not so sure that you do get it anymore, and I can guarantee I'm ten times as frustrated by my lack of progress as you'll ever be. At the end of the day, you get to go home, take off your lab coat, and resume your life, free of the digestive complaints you spend your day hearing about. I don't get to clock out at the end of the day. 

I'm tried of "hanging in there."

Deep in my heart, I feel like this treatment is not working. We are running out of viable options. The more pills that don't work, the more tests that are inconclusive, the more side effects and strange symptoms I seem to accumulate, the more you seen to step away. This is not my first time at the rodeo: I know a doctor who is distancing himself when I see one. 

As much as I posture and pretend, I know I don't know it all. I am, however, the expert on my disease. 

When the Prednisone YOU prescribed gives me high blood pressure, don't tell me it could be caused by a preexisting condition. Listen to me when I tell you I've never had a problem with high blood pressure before. Feel free to scroll through my entire medical history to check. I'll give you a minute. 

When I complain about being tired, so fucking tired, don't you DARE tell me it's not related to my Crohn's. How can you possibly know with certainty that "there is no way" the disease is causing this amount of exhaustion?  

Don't tell me that changing my diet won't help. I'm not a moron: I know flax seeds and green smoothies won't cure my disease, but maybe dietary changes could help alleviate some of my symptoms (the dietitian YOU sent me to agrees, by the way). 

You don't know what's going on. I get it. But it's not my fault that my colon isn't being cooperative, and I won't let anyone EVER make me feel to blame me for a disease process that is so obviously out of my control. 

Don't get frustrated with me: take it up with my AAC. 

If all else fails, be honest. Tell me you're not sure what's happening. Tell me you're looking for answers, or consulting with colleagues. I don't require perfection, only compassion. 

You ordered another colonoscopy, my second THIS YEAR, as a last ditch effort to find some answers. As much as I don't want the procedure, I do want clarity. So look for clues in my colon; take some pretty pictures while you're there. 

I hope it can give us some direction. 

In the end, though, I need a doctor who will keep trying. I need a doctor who will stay positive. I need a doctor who will give me hope when I am feeling hopeless. 

If you can't do that anymore, I will find someone who can. 

I'm not giving up on you just yet: don't give up on me either. 

Sincerely,

AAC

Post #100: In which Crohn's steals my ball (again)

EVERY TIME. 

In the picture above, I am Charlie Brown. 

The football is lack of pain; hope; happiness; normalcy. 

Lucy is Crohn's. 

Fucking Lucy. 

Day after day, I keep kicking the ball, thinking that TODAY WILL BE THE DAY that I connect, and every day I fall flat on my ass, and am stupidly surprised when the wind gets knocked from my lungs. 

Why should pain surprise me at this point? Why should it surprise me that it's in a different place this time? Why should it surprise me that sorbet and sprinkles (apparently, sprinkles are like nature's little thumbtacks once they hit the colon) would throw my carefully calibrated diet completely off its access? 

And yet: every time it happens, every time the ball gets yanked away at the last minute, I feel it as keenly as if it's happening for the first time. I guess it's a survival mechanism, to disregard the probable and willfully ignore the potential for pain and fear and discomfort. It's a choice I make every morning. How else to live out the day? 

Suspension of disbelief-it's my morning coffee. 

Today was a bad day. Tomorrow? I'll kick that ball again like it's the first time, and hope for better things. 

Post #98: Well played, colon, well played

I chugged these like a boss. 

Oh AAC, you tricky little minx. In an attempt to figure out why my colon was causing me so much pain, and why the various hardcore medications I am currently ingesting/injecting aren't allowing me to eat normal foods/drastically improving my symptoms, I went in for my MRE fully expecting to get some clear answers. I should know better by now. 

Confidential to the picture above: "berry smoothie" my ass. Funny story, I was running super late to my appointment (random traffic caused a 20 minute trip to take over an hour), so when I got there I was ushered right back and handed two ice cold jugs of barium-y goodness. As my nurse was shaking up jug #1, another nurse walked by and said, "5 minutes, ok?" Thinking she was talking to me, and kind of frazzled from being late, I burst out with "I can't drink these in 5 minutes! I'm not a frat boy! THIS IS NOT SPRING BREAK!" which caused both of the nurses to stop in their tracks and look at me like I was insane. 

After they finished laughing at me, one nurse explained that indeed I did not have to drink the two jugs o' fun in 5 minutes, and that I should in fact "sip them leisurely." The other nurse leaned in and said, "Confidentially? Those frat boy types really do try to pound these-it's like they just open their gullets and pour it down!" AMPs for the win. 

Fast forward to my doctor's appointment this week, and guess what? The MRE didn't provide any answers. To be clear: 

No new or worsening problems: AWESOME
No explanation for pain/continuing symptoms? less awesome

The doctor still thinks there is a partial obstruction of some kind, or some scar tissue, or some inflammation that is causing this. Solution? ANOTHER f-ing colonoscopy, with the intention of inflating a balloon in my AAC (dilation! like a cervix! but with less baby!) to widen the narrow part. I couldn't make this shit up. 

I was telling a friend about the procedure, which definitely qualifies as WEIRD and insane and something you don't think they could possibly do to a human body until they are telling you they are about to do it to yours, and she replied, "I would think that would be really uncomfortable when you wake up." It took me a second to realize she thought they were going to leave the balloon in there, like I would permanently have a "Congrats on the promotion!" balloon wedged up my ass. I laughed in my head for a long time about that one. 

So that is happening at the end of the month, which means I'm back to my favorite activity: waiting. Waiting! And trying not to obstruct. 

Before the appointment, I was sweating with anxiety, thinking about all of the things the MRE could show and all of the interventions I might need; after, with some of those same interventions hanging over my head, I only feel relief and......I'm not sure what else. Maybe because nothing is clear, maybe because there are still so many more questions than answers, I am hesitant to actually invest emotions until I know what course of action I will be taking. I think I am in a phase of managed expectations, which is where you end up when you get your hopes up too many times, and then lose hope too many times, and generally exhaust yourself with the up-and-down nature of chronic illness. 

I know how to do this part. I will wait, and worry, and distract myself until the next test/procedure/step, and then I'll manage my expectations all over again.

Post #97: I'll be the girl in the tube

Said no nurse to me, ever. 

Haha, nurse wood. 

So: mission MRE, completed. The hospital where I had the procedure just completed a fancy schmancy upgrade of their Radiology unit, which means the MRI suite was pretty posh. Soothing, back-lit pictures of verdant fields on the ceiling. Shiny new MRI machine. Slick wood floors, un-scuffed walls, that new car smell (well not really, but no antiseptic hospital smell either). Not that it mattered, really, as I was inside a loud whirring tube for the better part of an hour, but the upgrade increased the hospital's capacity by a lot (more machines! whooooo) so there was less waiting around after I finished my barium juice. 

Getting an MRI and a CT scan are two very different animals (I had a lot of time to think in the tube). When I get a CT, I feel like the blood in my body swirls and sweeps and rushes up and down in a current, like a half empty bottle of soda that has been forgotten under the driver's seat and rolls back and forth while you drive (just me?). An MRI feels like the cells in your body are being excited, like pasta just as the water starts to boil. For whatever reason, it feels a little like being simmered. You can feel your body heating up. 

It's not painful, or even unpleasant, but like so many medical procedures it can just be followed under WEIRD. It's a weird and unnatural feeling. When they inject the contrast, and your mouth fills with the taste of what the nurse has accurately described as a combination of paint thinner/nail polish? WEIRD. The fact that they have to strap what looks like a teenage mutant ninja turtle shell onto your stomach to get a better picture of your intestines? WEIRD. The fact that you are being shuttled in and out of a giant magnetic machine, easy listening being piped into your headphones, while a nurse gives you breathing instructions (STOP BREATHING NOW)? WEIRD. The whole thing is just weird. Amazing, and weird. 

As I was being slid into the tube, I had a momentary freak out, which I think is natural when they strap down your arms, cover you with a weird turtle shell thing, tell you not to move, and shoe-horn you into a loud, enclosed plastic cylinder. The give you a panic button (which the nurse let me squeeze-it sounded like an old-timey car horn, like on Chitty Chitty Bang Bang), but after a few seconds I realized that for the next 45 minutes or so, someone else was taking over my Crohn's. All I had to do was lay there and breathe. My bowels were coated; they injected something to slow them down; my IV was in (good job veiny!); I didn't have to worry or wait or think about it in any way. So I took the break, and it was nice. 

Then I came home, the bowel-slowing-down drug wore off, and I had explosive diarrhea all afternoon. But it was nice while it lasted. 

I meet with my doctor next week to discuss next steps. I am full of drugs (so many drugs!) and side effects and anxiety, but mainly I just want a plan. As I said before, I am worn down with waiting. It's not even a questions of losing patience; that isn't a concept that really applies here. I am worn down to the point where I  am afraid to have expectations. 

Whatever happens next week, I hope that I at least find some momentum. And, you know, a better solution for this whole Crohn's problem. And maybe a puppy. FYI: I would totally settle for the first two. 

Post #95: Meerkatin' it up

These meerkats are perfectly expressing both my general attitude and  "I have a pain in my colon"  position. 

Here's the thing about Crohn's: you can be having a perfectly normal  (well, "normal") day and suddenly, at 3am, your AAC oh-so-politely interrupts a perfectly sound sleep to express its displeasure. It's kind of how my mom used to wake me up for school. Most moms might slip into the room quietly, sit down on the bed, perhaps lovingly caress your hair and whisper, "time to wake up and greet the new day,  my most perfect treasure!"

My mom would turn on the lights and grab my ankle. Let me tell you, it's disorienting to go from sound sleep to full light and someone tugging on your leg. This is why I got an alarm clock in the 4th grade. This is also how my AAC wakes me up at night: not with a slow dawning of pain, a courteous twinge or two, but a full on onslaught of sensation. Asleep, then awake: not in pain, then in pain. 

I'm back on the full dose of steroids (yeahhh! but really, not yeah), and I should be eating f-ing real food by now, but instead I was thwarted by some lactose-free tapioca pudding WTF. I calculated, and I haven't had a "normal" meal in 23 days. If I'm using a lot of the word normal in quotation marks, it's because the definition of normal is constantly changing. It's stressful. And at 3am, when you are woken and surprised by pain you were not expecting, it's hard not to wish for the "normal" you had yesterday, which could still be crappy, but at least was not as painful. 

Anyway. 

I feel like I am having some emotional constipation about this most recent episode, about the stress and the pain and the uncertainty, and I think some of that can be chalked up to fatigue. But one emotion I can reliably access is my old friend annoyance: that's right, it's time for another round of "stupid shit people say about my AAC!" Because there's nothing like dwelling on the stupid shit other people say to deflect attention from you own emotional state (#avoidance). 

Person 1
I go to visit a friend who knows all the gory details of my AAC. I explain the situation to her. She looks miffed. 

Me: Why do you look pissed off? 
P1: I just think......I think they should be doing more for you. 
Me: Who? My doctor? I think he's doing pretty much everything he can. 
P1: Well, I don't. They should be helping you more. Like, with your diet. 
Me: Uhhh, I'm pretty much doing the broth thing. There's not much to work with. 
P1: Well, exactly! I can't believe there isn't more you could be doing to help heal yourself and make yourself feel better. 
Me: Food makes me feel sick. I'm not sure now is the time to be trying new diets. Plus, you know, doctors aren't into the whole "diet affects health" thing. 
P1: EXACTLY! How stupid is that?! (I don't totally disagree with her, btw). How could what you put in your body not affect the way you feel? It makes no sense. 
Me: Well, now is not the time for a drastic change. I will stick with my broth and hope nothing gets stuck in my business. 
P1: I just think it's been going on for too long, and there must be something you can do to make yourself feel better. 

Subtext: YOU ARE DOING CROHN'S WRONG. Obviously, the foods that you are eating, the ONLY ONES YOU CAN TOLERATE WITHOUT PAIN, are incorrect. Because I am currently trying this green juice recipe I heard on the radio, I am a nutritional expert. 

Person 2: 
Called to check in on me; I provided an update. 

P2: You're still on a liquid diet?! I don't think I could handle that. I mean, not to be able to eat solid foods? I think I would JUST DIE. 
Me: Uhhh, well....ok. I mean it's not like I have a choice about what I'm eating-I'm just trying to avoid pain. 
P2: But still, no solid foods? For almost a month? I don't know how you do it. I would just DIE. 

(thinking is my head: WELL OK WHY NOT JUST GO DO THAT THEN). 

Subtext: Your life SUCKS. What I really wanted to say was this: pretend that everyday, you had to poop out a lime. Like, push it out your entire digestive system. That would hurt just a tidge, no? Now let's say you could just drink the juice instead while your digestive system heals. Lady, you would be drinking that shit by the gallon and not be pining over a Big Mac. For serious). 

Person 3,4,5: I've hard this variation like two or three times this week. Here's one of the actual conversations: 

P3: Still on the liquid diet huh? 
Me: Yup. Broth and Odwalla for the win!
P3: Well, at least you must be losing a lot of weight. 
Me: Well I guess some, but I'm actually doing a pretty good job maintaining my weight. 
P3: Well, it wouldn't be so bad to lose a little weight, now would it?
Me: It would if it meant my body was literally eating itself due to malnutrition. 
P3: Oh. 

Subtext: Fatty, you are missing the silver lining in this whole Crohn's business-you could lose a size or two and really REAP THE REWARDS of this disease!

The sad thing is, these are my friends and family. They mean well. They want the best for me. And the people with my best interests at heart are still the ones supplying endless fodder for this blog. 

Excuse me while I go assume the meerkat position in the corner.