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 #104: Team Picky

And amber waves of.......inflammation? 

I have a confession: I used to be a self-righteous diet snob. 

I used to make fun (in my head) of the chia seed slurping, quinoa snorting, ancient grain loving, make-your-own-nut-milk types. The hipsters and the raw juice fanatics. The whippet thin ladies in lululemon yoga pants who populated the aisles of Whole Foods. The suit wearing professionals pouring over ingredient lists with laser like focus, paying $8.99 for a package of gluten-free brownie mix that will invariably look (and taste) like sewer sludge. 

I had more tolerance for the true die hard hippies, the kindly men and women who cruised the bulk item section of the local co-op, buying five pounds of organic dried black beans to cart home on their bikes (in the rain. whilst wearing Tevas and hiking socks). 

Of course, there were those with true food allergies, but in my cynical mind, the proliferation of gluten-free fake out foods in every local grocery store was due more to the whims of an upper middle class consumer base obsessed with following the latest diet trends. Gluten, in particular (and now to some extent soy, dairy, and refined sugars) seemed to be the cause of all of our health woes. It was the devil in grain form. 

My bullshit meter exploded. This is the new Atkins, I told myself. People have evolved to enjoy a varied diet, which includes such illicit foods as pasta (gasp!), bread (shock!) and muffins (horrors!!). I scoffed at the people who strove to eat like cavemen, or only ate hot dogs and bricks of cheddar (seriously, I know someone on Atkins who did this), or ate according to blood type. 

Before Crohn's, I used to pride myself on being a "good eater." This meant that I was flexible. Ethiopian food? Vietnamese? Japanese? Greek? Sure! I could find something to eat anywhere. I enjoyed trying new foods. I ordered off the menu without substitution. I could go to a dinner party and eat what was served without hesitation. I could overindulge one day and be fine the next. I wasn't afraid of food. 

I'm not a "good eater" anymore. 

What I didn't account for, in all of my supercilious, judgmental assumptions, was that for some of these people, diet was a last (or maybe for the smart ones, first) attempt at mediating illness. I looked at these shoppers and saw picky eaters, when in fact I might have been staring at sick ones. Like me. 

I resisted changing my diet since my diagnosis. I counted on the medicine and the doctors to make me feel better. In some ways, I am better, but in many ways I am not. As I said in my last post, I was waiting for the turnaround, so it didn't make sense to me to radically alter my lifestyle in the meantime. I ate what I could tolerate, justifying my diet with the oft repeated "diet just doesn't matter with Crohn's" refrain I kept hearing from all of the medical professionals around me. 

Lately, though, my thinking has changed. How can what I eat not matter? When my nurse, talking to me after the doctor had left the room, suggested an anti-inflammatory diet, I took it as a sign. It was time to try something new. 

All of this is to say that next week, I join team picky. 

I'm not going to name the diet I'll be trying, because I don't want to advocate any specific dietary restrictions, and I don't even know if it will yield any positive results in my case. I will say that I won't be eating dairy, wheat, or refined sugar for the foreseeable future. The diet I picked is one with a lot of clinical research around it, and I'm working with a dietitian to map it all out. 

I am of course afraid that this will make things worse, but I play to go about it in a very slow, measured way; I'm also curious to see what effect, if any, this has on my health. 

I figure if I can give the super scary injectable medicine a six month trial run, I can extend the same opportunity to a diet, no matter how restrictive. 

And to the people I was silently judging for buying  6 dollar bags of gluten free pretzels: I'm sorry. I was an asshole. If those pretzels made you feel better, I was in no position to judge your choices. You might see me wandering the aisles of Whole Foods in my yoga pants-please be kind. Also, save me some snacks. 

Post #90: Spa day!

I have a mani/pedi at 11 followed by a deep tissue massage at noon......
 


JUST KIDDING! Actually, I have a week long dose of steroids (the real kind! non of this corticosteroid bullshit) and an all liquid diet (for the foreseeable future).
 
When I hear "all liquid diet" a few things come to mind:
 
1.) SPRING BREAK BABY
2.) weird diets celebrities go on to lose weight for big events like the Oscars
3.) jaw surgery
4.) fancy spas. Soups! Cucumber water! Beetroot/ginger/kale/worm dropping smoothies! In between mud wraps, detox like you mean it!
5.) fancy-ass yippies who periodically "cleanse" their systems with home delivered organic juices (I'm looking at you, Mistress GOOP)
 
I was going to list nutrisystem (a shake for breakfast, a shake for lunch) but I forgot about the sensible dinner part. Foiled! At any rate, I don't think about Crohn's, and I don't think about drinking diluted apple juice like it's your job in order to stay hydrated. Suprise! Yet another fun facet of the rollercoaster ride that is my Crohn's.
 
When last I posted, I had just returned from the ER, dehydrated, SOBER (the first rule of Crohn's club is ALWAYS TAKE THE PAINKILLERS. wtf), and freaked out. It's almost a week later, and while improving, the symptoms have not fully resolved themselves. No one is really sure what is going on, but in a bid to buy some more time for the new scary injectible medicine to kick in (yes, I took the plunge), my doctor has decided to put me on steroids for a week, have me do the all liquid diet thing, and hope that my AAC calms the F down.
 
The all liquid diet is, I must say, kind of demoralizing. Nothing says "I'm sick!" like eating drinking BROTH. Ugh. Also, side note, store bought broth is foul-tomorrow I'm going to go all Martha Stewart on broth's ass and make it myself (bouquet garni for the win). I am also going to go buy some Ensure. So far I have been eating drinking watered down fruit juice, watered down Gatorade, watered down soup (like tomato soup, nothing fiber-y), and organic protein smoothie things that taste like the chocolate milk I used to get in grade school. I'm not hungry-I'm actually pretty nauseous-and the one thing I want when I'm nauseous are carbs. Crackers and bread. As you may have noticed, these cannot be consumed through a straw.
 
I feel like these major shifts come on suddenly. Last Wednesday-day, I was fine-I enjoyed a lovely turkey sandwich and went about my business. Last Wednesday-night, I was doubled over and sweating through the sheets. These quick deviations from the expected leave little time to do anything but adjust and plod forward.

So that's what I'm doing-plodding forward, distracting myself with Pinterest, and swimming through a sea of liquids. Cocooning myself in my quilt and constantly checking in with my body for any sign of things that are different-good or bad. Watching endless episodes of "Diners, Drive-ins, and Dives" (don't judge me) and wishing, not for the first time, that I could eat 1/10th of the food they present on the show, or eat food in general with 1/10th of the enjoyment and gusto of the people sucking down greasy chili dogs in some Baltimore hole in the wall.

But before I conquer the chili dog (shudder), I first have to conquer the egg, and the saltine, and if I'm feeling wild, the plain pasta. I miss you, solid foods. I can't wait for us to be friends again. 

Post #70: I never call BS on ranting

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

Won't you come join me? Pull up a chair, plenty of room.

 

Le Prompt: Call BS on something. What's something that is just ridiculous?

Well what do we have here? Another prompt that requires RANTING? OK!

 

 

I think this list requires a rating system; let's say 1-5 pooping cows. Obviously, the more pooping cows, the more bullshit. To the list!

 

5 Cows: Plug your nose holes

 

Doctors who say they can "fix" or "cure you

I was trying to figure out where my extreme distrust of gastroenterologists came from, and one of the reasons that I came up with is that pre-diagnosis, in the IBS days, 95% of the doctors I visited, be they gastros, internists, or even naturopaths, assured me they knew what was wrong and they knew exactly how to fix it. They had ideas, and plans, and a confident air of expertise. They all failed.

 

Maybe I wouldn't have raised my hopes so high if they hadn't been so sure of their ability to correctly diagnose and treat my problem, but every time I was left in a deeper and darker hole than when I started. One gastro, after prescribing 4-5 medications (bear bile, anyone?) finally looked away from the computer screen, propped his elbows on his knees, and said, "Well, I'm out of ideas." So what should I do next? "Maybe go see a different gastroenterologist." Thanks! And the saga continued.

 

Now, I don't think any of these doctors would have fed me the same lines if I had a Crohn's diagnosis-they're not quacks. But one of the reasons I like my current doctor is that he has never claimed to have all of the answers. He said in our first meeting that treating Crohn's is an ongoing process, and it would probably take some time to find the right medication combination that would give me the best symptom control. And that has always been the goal: symptom control, remission, quality of life: actual potential positive outcomes with this disease.

 

I'm still working hard to trust him, even though he has never tried to sell me a promise I know, deep down, to be false. It is, like the Crohn's, an ongoing process.

 

4 Cows: Grab a shovel!

 

Medication side effects that are worse than the actual disease

For serious. In the early days of taking one medication, I had this actual thought:

 

Untreated Crohn's is preferable to this drug.

 

Let that sink in. Crohn's is bad enough, but add in a laundry list of super fun side effects and the party JUST KEEPS ROCKING. Now, nausea and diarrhea (ironic, no?) are one thing, but then add in the really scary potential side effects: lymphoma, heart failure, fatal infections.....it's enough to make you want to crawl under a rock and suck your thumb. Beyond worrying about cancer or catching pneumonia, there is the great known/unknown conundrum. I know how crappy I feel with untreated (and, sometimes, treated) Crohn's-how exactly, and in what ways, will I suffer with new medications A, B, or C? It's never an easy decision to decide to cast your hopes on a medication that will potentially (and in my experience, frequently) make you feel worse than when you started, hurting you as it's "helping" your disease.

 

3 Cows: Fertilize those flower beds!

 

Colonoscopies

In the world of Crohn's, you'll hear this a lot: colonoscopies are the GOLD STANDARD of diagnosing and monitoring the disease. It's the best way to know what is going on up in your digestive business; sure, an MRI can show inflammation or strictures or obstructions, but nothing beats getting up close and personal with your mucosal lining with a camera attached to a giant hose. Here's the deal: WHY HASN'T ANYONE FIGURED OUT A BETTER WAY TO DO THIS?! Yes, there are those little pill cameras you can swallow, but it's not the same.

 

Dear science: first, focus on the cure for Crohn's thing, that's muy importante. And while you're doing that, I guess find better Crohn's treatments with fewer side effects and less toxicity. But if you have time, and want an extra credit project, can you work on creating a less invasive test to scope out my AAC? Maybe a "Magic School Bus" style shrinking ray for my doctor and a tiny colon submarine? Thanks.

 

2 Cows: Collect those Rocky Mountain oysters!

 

Insurance

Having to worry about getting and maintaining coverage if you have a pre-existing condition?  Let's work on that.

 

1 Cow: Mooooooooo

 

Fatigue.

I really, reallllllly have to call BS on Fatigue. I know it's a symptom of my disease, and actually of some of my meds, but I would like to get through the day without having to take a nap. I would like to, say, attend a yoga class (where I worry about colon explosions a lot of the time, btw) and know that I have enough energy to complete the class AND stay awake for more than an hour after it. It's frustrating to only have energy in fits and starts.

 

All of the things on this list are bullshit worthy. You know what is NOT bullshit worthy? The fact that this is my 70th post. Holy crap. Through flares, brief periods of remission, colon explosions, new meds, old meds, and now a month of daily blogging, my ass (and my AAC) has been writing post after post. Thanks for reading about the goings on in my colon, and I hope your own AACs aren't angry at all.

Post #44: Second verse, same as the first....

Drama cat says, "nooooooooooooooooooooo"

Fuckity fuck fuck fuck.

Guess who's going back on steroids?

Guess who also still has a cold, after a week and a half, and might need a chest x-ray and a z pack?

Guess who still gets to take the scary medicine AND the steroids after that cold is done? THIS GIRL.

High fives all around! Oh right.

(dramatic sigh).

So I guess there really have been signs all along. And like last time my colon freaked the fuck out, I ignored them until I couldn't. Until there was pain and fear. Until there was only once choice, a choice I felt "forced" to make even though I should have made it months ago. Same song, same station, different day.

I know the steroids will make me feel better, but I also know what tapering means, and how demoralizing it is to slowly lose the control the drug brings. I don't know about the scary drug, and how it will make me feel, but I do know that soon I will have not one but two powerful drugs coursing through my system. I know there will probably be side effects. I know that my pill count will climb again. I know I'll feel alone and powerless over what is happening to my body.

It seems almost quaint that a few days ago, I was idly rationalizing the decision to take this drug.

It seemed like a decision that was far off in the future, a decision that wouldn't effect me now, or so soon.

Someone asked me how I'd feel if I didn't take the medication and developed complications; I said I would be mad at myself. They asked how I'd feel if took the medication, and still developed complications: I said I would be mad at the universe.

I'm just mad.

And in my head, in a loop, I think please be ok, please be ok, please be ok. Every time I go to the bathroom and check for blood, or eat anything, or feel the familiar sweetness of Gatorade slip over my tongue. Please be ok.

Over and over again like a prayer.

Post #43: I took a break, buy my Crohn's didn't

This is what you get when you google "Crohn's flare." Assholes, like I could eat this shit even if my colon were not inflamed. Also, why does the frosting look like mashed potatoes? Ugh.

The title of this post should be sung to the tune of "I fought the law and the law won." Totally stuck in my head now.


Yeah, so, oops....haven't posted in a while. I was on vacation and even though I had internet access I didn't want to talk about my AAC. So sue me.

Before I left, I had a non-religious "come to Jesus" meeting with my gastro. Within 60 seconds of shaking his hand and starting to discuss my digestive business, I burst into tears, per usual. On the one hand, it's embarrassing that I can't make it through a single appointment without doing the ugly cry, but at this point I've kind of stopped trying to fight the FEELINGS. Whatever. It's not like he usually delivers good news and then we play with puppies the whole time. Shit is stressful.

After a lot of obsessing, denial, and stalling (3 month taper, anyone?), I decided to go on the meds I was hoping to avoid. It's time to give them a try. A few things became abundantly clear during my meeting.  My gastro broke it down: what are your goals for the next six months? I said I wanted to go back to work. He asked why I wasn't working (I took my leave of absence a while ago, and technically could have worked this quarter), and if it had anything to do with Crohn's symptoms. At first, I was like, no silly gastro! I'm taking a BREAK. I'm RELAXING and GETTING BACK TO NORMAL.

And then I realized: no I'm not. I'm doing exactly what I was doing before-piecing together an existence based around unpredictable symptoms and pretending that EVERYTHING IS FINE. But everything is not fine. Having 1-2 bad days a week, that kind of take me out of commission for a morning/day, is not fine.  I realized that in my current state, I couldn't go back to work with any degree of confidence. As my gastro said, so kindly, "I really don't think your symptoms are as under control as you think they are."

For a long time, during this period of tapering and should I/shouldn't I take this drug thinking, I assumed that I would get a black and white picture of the situation and would be able to make the right decision accordingly. Unfortunately, there were no fortune cookies with "TAKE THE FUCKING DRUGS ALREADY" fortunes, or long spaces of symptom free days where I picnicked in alpine meadows and communed with all that was natural and bright. It's been an in between, not that great, not always terrible, middle of the road kind of deal. I was so worried about making the right decision that I didn't make any decisions. I watched a great Crohn's round table thing online (wish I could find it again, would totally link to it) where a doctor said he tells his patients that the medicines they are taking  are "forever for now." New drug therapies are in development, symptoms can change, situations can change, and the drug you take today might not be the drug you take for the rest of your life.

I think that is what was holding me back: I had to be SO SURE about this decision because I would be on this drug for the rest of my life-but that's not necessarily true. And that flexibility is freeing. I like my gasto's approach: what are you goals, and how can we get you there? The goals will change, and the medicine might have to change as well. I've got to start somewhere.

Unfortunately, I have had a cold for the last week and a half, so I don't think I can start this drug right now. I'm going to call my gastro's nurse on Friday to check, but I'm still coughing up green shit so I think it's a no-go (and you thought this blog was just about POO).

I'll update soon-right now, it's time to watch the Olympics even though I know how it all turns out THANKS A LOT CNN. Things that are awesome: the hilarious England-themed jumps for the horses, sparkly spandex, hurdles. Diving and Olympic kayaking (?!). The fancy water polo baby caps. The super excited parents in the stands. AMERICAN BEACH VOLLEYBALL SHOWDOWN. I love this shit.

Post #6

Like this soccer coach, I also assumed the position today.

Sigh. Day one of taper: not a success. I'm not sure I can blame the meds for this, but for the first time in a while I woke up with that familiar nauseous feeling, followed by pain and cramping, followed by....well, I'm guessing you know what comes next.

It's ONE day, I know, just one bad day, but it's still a shitty (so true) way to start the day. I've been nauseous after every meal today too. I started the whole "no white flour/no white sugar" thing-I'm still questioning why I'm doing this (it's anti-inflammatory! carbs are evil! the naturopath told me to!), but if nothing else it will force me to wean myself off bread to some extent. I went to Whole Foods and bought a lot of products that involve spelt, and some gluten free shizz. I ate some vegetables at lunch and again at dinner. I've been sitting here watching TV on mute and waiting for my stomach to decide how it feels about brown rice, asparagus, and salmon.

On the one hand, I want to start eating less like a sick person. I need nutrients. I'm bored with the foods I've been eating, and I know that I need more variety. On the other hand, I don't want to piss off my AAC.

One of the things that happens to me when I have a lot of diarrhea (I think this is the first time I've mentioned the word on this blog, but it probably won't be the last. Huzzah!) is that I spend the rest of the day in a fog. Mentally and physically, I feel depleted. It's similar to the experience of driving home from work after a long day and suddenly realizing you're in your driveway, but not really remembering all the details of driving there. You're on autopilot-the animal part of your brain is driving the car: foot, brake, foot, gas, check mirrors, turn signal, brake, merge, don't speed, don't speed, brake, gas, brake...you're in control but you're not connected. You do what you need to do but without finesse or awareness.

I went out to lunch. I went to the library. I did some shopping. I visited a neighbor. But I was so mentally disconnected from these tasks. I was nauseous and tired and trying to gauge my system's reaction to the things I was feeding it. I took a two hour nap today because I needed to, not just because I was a little tired. I hate that.

I should probably start back up with the food/symptom diary. For about a month and a half, right after I was diagnosed, I kept track of EVERYTHING that went in and EVERYTHING that went out. It was color coded, yellow for bad symptoms (pain, gas, bloating, colon explosions) and green for good (normal bowel movements!). The printout looked like it had been mauled by a yellow highlighter. I would drag this thing to every doctor's appointment, because I got so sick of describing my symptoms and their frequency.

It made me feel like a lab rat.

I really hope that my system can accept the new foods I'm going to introduce. Right now it is making sounds of protest, but there's no pain. So, it's back to keeping track, of watching my AAC like a nervous stage mother. Back into the unknown. Hopefully not back into pain and fog and exhaustion.

Post 4: Brought to you by Tom Sellack's sexy sexy chest hair

Tom thinks I should stay on the steroids FOREVER. I love you Tom, you sexy beast man.

Oh Google. My favorite part about this picture is that Tom (we're tight) apprears to not be holding an old school cell phone, but a regular phone that has just been unplugged from the wall.
So......tick tock! What's that sound? The sound of IT'S TIME TO START TAPERING OFF OF STERIODS. ugh. I would be lying if I said I wasn't concerned about tapering down-the steroids have....worked. On Monday I will start taking two pills instead of three. And then next month, one pill instead of two. What happens during this process will determine my next steps. I am really, really trying to avoid taking what I refer to as the "super scary cancer drug," which in reality is just an immunosuppresent. With an increased risk of developing cancer.

What is super frustrating to me is that there is really no good way to determine what's going on up in my digestive business. Sure, the symptoms are better, but, as the stupid drugs ads remind me on TV, am I still subject to DAMAMGING INFLAMMATION (cue horror movie music)? Apparently, it is possible to be asymptomatic and still have bad things happening in your colon, which is the rationale for going on the scary drug, which just kind of puts a damper on whole "your immune system attacking itself" thing. I really wish that there was a little porthole on my side, so I could peek in and determine the state of things.


So as I taper, I'm going to add in some vitamins/supplemants and go off of white flour/white sugar. I went to a naturopath (who is supposed to be THE GUY for IBD patients in my town) who wanted me to do the SCD (specific carbohydrate diet). Like the good little soldier that I am, I promptly bought the book and several cookbooks that rely heavily on almond flower. I read through it, and I don't think it's for me. Maybe it's my distaste for this particular naturopath (again, another post!), maybe it's my general disbelief in anything promising to "fix" or "heal" a chronic condition, or maybe it's just my reluctance to eat bone marrow and make my own cheese, but the whole process seems unsustainable for me. However, avoiding the white stuff seems doable and healthy and might help wean me off of bread, which is like my crutch in this whole shit storm. There were months where I was living entirely off of white bread, hummus, and lemonade gatorade (yum!). They are my security blanket and culinary happy place.

I'm going to try adding in some new foods and TRY to bust out the (cooked) fruits and vegetables. Granted, if my symptoms come back, I might curl up into the fetal position with a dozen bagels and a 15 lb. bag of white sugar, but I'll give it a try. That seems to be all I can do as I look forward to the next few weeks: try something new, see what happens, wait and see, adjust accordingly.

I hate uncertainty.