Tag Archives: Crohn’s

Apparently I speak Braille now.

8 Mar

Screen Shot 2016-03-06 at 7.27.26 PM

I can’t decide if acne is better experienced as a teen , when pretty much everyone is struggling with it – or as a forty-something, when you have very few shits left to give.

I’ve never really had bad skin – up until the last two weeks of my life. Because I assume it is temporary – likely the result of stepping off the steroids I’ve been on since September – I approach it mainly with curiosity, rather than frustration. It’s somewhat intriguing to wake up each day wondering, “Where might I have a new pimple today?”

I’m reminded of a friend I had in my early twenties, who was quite pretty. When we caught up a decade later, after her first pregnancy, I asked how it had been. “The pregnancy was fine, but my face was NOT. I had terrible acne,” she said, clearly still not over it. “I mean, I’m used to getting the best table or whatever when I go out to eat – and for three months I honestly knew what it was to feel ugly.”

At the time I laughed, thinking, “Finally! She knows what life is like for the rest of us!”

Now, though, I can muster a bit more sympathy. While I haven’t experienced the horror of receiving a downgraded table (probably because I never experienced the thrill of an upgrade!), I can relate to looking in the mirror and seeing – if not a stranger – then a somewhat bizarro version of myself.

It’s a good reminder: beauty is only skin deep, and looks can be deceiving. I’m healthier (knock wood!) with a bumpy face, than I was before with a smooth one. The fact that I’m stepping down from the steroids means things are working and I’ll soon (fingers crossed!) be on a single medication.

Who knew I’d be giving thanks for zits? Oh, Crohn’s, you silly bastard!

Punk’d by a Phlebotomist?

26 Sep

Funny Stool Sample

Apparently my Crohn’s took a turn for the worse this year without my knowing it. When I went for my annual colonoscopy in June, my intestines had narrowed significantly, indicating either some crazy amount of ongoing inflammation or the creation of scar tissue. Since I don’t experience symptoms on a daily basis, I was inclined to ignore it and carry on – but after the three doctors told me that doing so would likely result in my intestines rupturing and necessitating emergency surgery, I decided to listen.

As a result, they’ve started me on a combo of steroids and an immunosuppresant (6MP, used primarily as chemo for people with leukemia). Because of this, I need to have blood drawn weekly to check my white blood cells and make sure my liver isn’t short circuiting from the influx of chemicals it’s being asked to process.

I share this by way of explaining how it was that I found myself seated in the lab at GW Hospital, waiting for a large man who didn’t possess an “inside voice” to draw my blood Monday morning before work. The way the blood-drawing stations were positioned, I was in the awkward seat that faced out into the waiting area, so I had a bit of an audience.

I normally wouldn’t have a problem with that since I’m fine with needles, but it’s something of a game-changer when you’re facing an audience and the phlebotomist booms, “DID YOU BRING US A STOOL SAMPLE TODAY?”

“Um, no?” I tried to use a librarian’s voice to provide an example for him.

It didn’t work. After drawing my blood, he brought back four containers, a plastic bag and a sheet of instructions. Instead of discreetly handing them to me, however, he decided to give me a very loud lesson on what needed to happen.

I chose to bask in the awkwardness, so as he started yelling (“THE LID HAS A SCOOP FOR YOU!”), I glanced around the waiting room to see if any of the other patients found this as amusing as I did. The same strangers’ eyes that had been keen to watch my blood get taken were all suddenly boring holes in the floor. No one would meet my gaze – it felt as if I were wearing the human-equivalent of a dog’s cone of shame.

I’d half tuned him out in my assessment of my audience, but my head whipped in his direction to the tune of a mental record-scratch when I heard him say, “SO YOU STRETCH PLASTIC OVER YOUR TOILET BOWL…”

Excuse me? Are you reading a passage from “Pranksters 101?” I’d missed what he had said before that, but I couldn’t think of a single reason that it would be EVER a good idea to stretch plastic over one’s toilet bowl. Later that night, when I related this to my sister, she eloquently bottom-lined it: “Wait. So he wants you to shit on Saranwrap?”

Before I could even suggest that she’d missed her calling as nurse, she followed up, “Why is a phlebotomist giving you instructions for a stool sample anyway?”

“I got the sense that he was providing the instructions theoretically but had no first-hand experience with the collection process himself,” I told her.

“Right,” she responded. “He probably just makes things up just to see what he can convince someone to do. Did he wrap up by asking you to report back on how it goes?”

I could hear her wheels turning as she warmed up to the idea of a phlebotomist prankster giving ridiculous instructions. “If I were him, I’d tell people, ‘Listen, you’re going to shit on Saranwrap, so try to have a little fun with it. Roll out your yoga mat, grab the handle of your oven door…'”

Headshake. And this is why we’re glad my sister is not a doctor. Or a nurse. Or a phlebotomist.

Next week when I go in for my blood work, I’ll be prepared. When he asks how it went, I’ll say, “The trickiest part was getting the water out of the bowl before I lined it with plastic…”

Two can play at this game. Bring it.

 

 

I have a BETTER bucket challenge for you.

19 Aug
Don't laugh - he's raising awareness.

Don’t laugh – he’s raising awareness.

I think it’s great how the Ice Bucket challenge has raised awareness of ALS. I’m glad people started clarifying that really, the thing to do is BOTH share a video of yourself getting iced AND donate to the cause.

That said, I’m kind of sick of seeing the videos in my newsfeed. With the exception of one college friend (go, Hoyt!) who attempted to re-enact his best dance moves to “Ice, Ice Baby” before getting drenched, there’s nothing really amusing about watching people (in the heat of August) suffer from a mild dousing.

I’d like to up the ante in TWO WAYS.

First, there’s a cause that’s near and dear to my heart (or my belly button, if we’re speaking in literal terms) that almost no one talks about: Crohn’s Disease. Perhaps that’s because the sufferers very often shit themselves. (Though actually, I don’t know – taking a flyer on that since it seems like most of my friends over 40 like to share similar stories without even the benefit of an official diagnosis.)

Second, I think there’s a better challenge to be had. Rather than dumping ice water over your head – which looks mildly refreshing in this August heat – I propose that to raise awareness for Crohn’s, you film yourself pouring some edible and biodegradable brown mixture (pudding? chocolate sauce?) down your shorts. Because unlike the non-existent connection between ice and ALS, there is a very real connection between food and Crohn’s – and messy pants.

Finally, because we need a hashtag to help this thing go viral, I’d like to abbreviate the challenge. Instead of calling it the way-too-lengthy, “Spreading Crohn’s Awareness Together Challenge,” we’ll just go with the much more tweetable SCAT Challenge. Or #scatchallenge if you will.

So who’s on board? Send me your videos or post and tag @pithy_pants so I can see your handiwork.

I’d do it myself – but I don’t have a yard… Seriously.

(Oh – and here’s where you can read about or donate to the cause.) 

Knock, knock. Who’s there? Barry? Barry, um, in, um, uh?

17 Jul
Confirmation that it's bad: this e-card already existed.

Confirmation that it’s bad: this e-card already existed.

If your day started out as expected and didn’t take a sideways turn when someone surprised you by putting a tube up your ass, I think you can consider it a banner day.

Just, WOW.

Let me back up… This morning I went to the hospital for a CT scan that was scheduled weeks ago, when symptoms led my doctor to believe my intestines might be nearing the point of explosion.

(In case you’re curious, those symptoms are: sustained high fever, stabbing appendicitis-like pains, overall body aches, nausea, and either projectile-vomiting or diabolic diarrhea. So basically, either a Crohn’s flare or the flu.)

To make sure my disease hasn’t progressed to the point of needing surgery, a CT scan was ordered. I was stoked that a colonoscopy wasn’t needed. What’s that saying about asses and assumptions?

This morning I showed up, woefully ill-prepared for what awaited me. I should’ve realized – after handing the receptionist my doctor’s order – that I was in for something special. She looked at it, then turned to a scrubbed up technician walking past the desk to ask, “Have you seen one of these before?”

Not a good sign. He looked at it, then looked up at me, then back at the paper. A doubly-bad sign.

After they whispered for a bit, I was shown back to his office and given two gowns to change into. TWO. Another bad sign.

When I emerged from the dressing room, he said, “OK. I’m going to have you sit right here in my office so I can keep an eye on you. Do you know anything about this procedure?”

Also known as "Radioactive Milk."

Also known as “Radioactive Milk.”

Apparently I did not. The nutshell: I had to drink a 1/2 liter of Volumen (basically a Barium suspension) every 15 minutes for 45 minutes, then hop on the scanner table and roll to my side so they could give me a Barium enema – then squeeze my cheeks while they slid me into the scanner for photos.

Wait. A. Minute. No one warmed me that I’d be getting an ENEMA.

While the idea of a tube jammed up your ass is disconcerting when suddenly sprung on you, the more immediate concerns are: Is there any chance I need to GO to the bathroom? How robust was my toilet paper this morning? Might I accidentally poop on this stranger?

It’s not a great place to be. I said, “Hold up. I can’t believe no one prepped me for this. Do you always get stuck breaking the news?” He shrugged and gave a “what can you do?” look.

“Boy,” I said. “Seems like you get stuck with all the fun stuff.” He cringed and nodded. I had to go out of my way to not use the word “shocker,” because I didn’t want him getting any ideas when he flipped me to insert the tube.

“Well,” I continued. “I’m sorry in advance. For both of us.”

He nodded before he caught himself. Then he tried to save it by saying, “It’s not so bad. I could be in the ER. At least you’re a walkie-talkie.”

“Walkie-talkie?” I asked.

“You’re walking and talking,” he explained. “In the ER, most people don’t have insurance, so they’re homeless or indigent. They aren’t always conscious and they don’t shower often.”

Perfect. That made me feel a bit better. I was pretty sure I could stack up favorably compared to a homeless person. But then again, no guarantees.

When he handed me the first bottle of Volumen to drink, he asked if I’d like a straw. I shook my head, screwed off the lid, and chugged it without pausing for air. I think he was mildly intimidated when I passed the empty back to him. Probably for many reasons. At this point, I began imagining myself played by Melissa McCarthy from Bridesmaids, in the screenplay of my life.

During this 15 minute interlude, he attached an IV to my arm so they could push the contrast dye into my veins easily once I was on the table. To make small talk while he did this, he asked me my age. Turns out we were only a month apart.

I’m here to tell you: the only thing worse than learning that a stranger is going to give you an enema, is learning that he is pretty much your age. Because you can imagine the happy hour he’s going to have, when he tells his friends about the unexpected procedure he had to conduct, and the otherwise professional woman who shat herself on his table.

I tried to block that image and instead chugged the next bit of Volumen.

Around this time, he started to get nervous about the timing. The last bottle of Volumen needed to be consumed in two drinks, with the barium enema occurring in between, and the dye injection happening after. He was using his smartphone to set timers for everything. “Just me,” I asked, “Or is this a bit of a circus?”

He nodded. “We don’t do this that often, so it’s a lot to coordinate.”

We moved to the CT Scan machine and he consulted his phone. “OK. Time to step out of your panties and lie on the table.”

How about you don’t use the word panties during a medical procedure? I thought.

Silently, I complied. I settled in on the table, knees propped over a pillow. And then he said, “OK – roll to your left.”

Before I did, I said, “In case you wonder what’s going through someone’s head at this moment, I think you should know. I am praying I don’t shit on your machine.”

He nodded solemnly and said, “I appreciate that.”

I rolled over. Tube inserted. My bowels filled with barium and the feeling was similar to when I flushed a toilet in Australia and saw everything swirl in the reverse direction.

It was go-time. I performed. And I did not ruin the machine.

Is it wrong to high-five a technician when you bolt out of the office? If it is, I don’t want to be right.

And that was my hump day. How was YOURS?

Seriously. They sell this shirt on Zazzle.

Seriously. They sell this shirt on Zazzle.

There’s a party in my pocket…

22 Feb

Image Source: http://farm3.staticflickr.com/2328/2237145054_609fe91027_z.jpg?zz=1

I know, it’s one of the cardinal rules of laundry: always check your pockets.

But you know what? So is the idea of not mixing whites and colors, but I do that all the time without consequences. I think a better rule is: separate loads for things that touch your face and things that touch your butt. Cloth napkins and underwear? Should not be in the same cycle – I don’t care how hot your water is.

Anyway… back to my pockets. I learned the lesson the hard way today.

“Was it a Kleenex?” I can hear you asking.

Worse.

“A pen?” you ask.

Worse.

“An angry squid?” you prompt.

Um, not that bad. And stop guessing before you ruin my story. 

What your laundry looks like after taking Crohn's medicine.

What your laundry looks like after taking Crohn’s medicine.

I take 11 pills a day for Crohn’s, nine of which are slow-release capsules that dissolve in my GI tract. That’s three doses of three pills, staggered 8 hours apart, which makes the mid-day dose a bit problematic to remember. To solve the problem, I set my phone to go off and remind me, and I carry the pills around in my pocket all day so I have them on me when it goes off.

Apparently I missed a dose last week. Because it showed up in my pocket in today’s wash.

“Wait,” I can hear you asking. “How is washing medicine a bad thing?”

I’ll tell you. Aside from the inconvenience of running out early (and having to fight with the insurance company to authorize an early refill as a result), the deal is this: slow release capsules are apparently made from plastic. And they’re filled with white plastic bee-bees the size of cake sprinkles.

As soon as I opened the dryer door, I understood what had happened. Every piece of dark fabric had hundreds of white dots all over it. It looked like someone had shot a small cannon of confetti into the dryer. I cautiously pulled item after item out, the small white balls dropping on the floor as the static that attached them to the clothing wore off.

I sat down to fold the clothes, wondering if it would be obvious where the origin of the leak had been. It was. I lifted a pair of my new (dressy!) fleece pants from the basket and they looked marbleized, they had so much white on them. I shook my head and plunged my hand into the pocket.

Yes, it was full of even more white dots. But the real surprise was the overall texture of the pocket: it had been turned to plastic. Apparently the capsule casing is some form of plastic that melts when exposed to stomach juices or high heat. My pocket was now stiff, like someone had slipped a Shrinky Dink in there.

When seeing the havoc these three simple pills wreaked on a load of laundry, I found myself wondering exactly how they help my gut. Do I have an ever-growing wad of Shrinky Dinks in my stomach? Do my intestines look like a perpetual parade route lined with confetti?

In any case, I think I’ll install a disco ball in my bathroom.

Image Source: http://www.lakberinfo.hu/cikkek/09/01/08/42-18159257.jpg

Apparently I wouldn’t be the first.