Just East of Normal

Crohnically Ill, Uncategorized

“You’re showing signs of remission.”

The words every patient wants to hear… until they’re followed with:

“We think your symptoms are due to your post-surgical anatomy. Consider this your new normal.”

Awesome. So I can’t eat like a normal person. I can’t exercise like a normal person. I can’t even perform a stream of normal daily tasks like a normal person.

Nope.

My normal is just east of normal. Better, but not quite there. And not only will I never get there, I should just stop trying.

Ouch.

Mega ouch.

But then I slap myself upside the head.

I’m ALIVE.

I may feel like several cement trucks ran me over when I get up in the mornings, and I may experience several severe bouts of nausea throughout the day (I might even hurl), and I just may have a severe stomach ache, one that makes me look pregnant and doubles me over, but I am still alive. I have the privilege of groaning myself awake every morning. I’m granted the opportunity to trudge through each day, and I have a beautiful family to come home to each night, no matter how much we drive each other crazy.

I’m living this thing called life, and not everyone gets to.

I almost didn’t.

If east of normal is what I’ve been dealt, I’ll accept it graciously. It allows me to relish each day I get, pains and all, to the fullest. I will find positives in everything, no matter how scarce they seem. Life is meant to be lived and loved, and I aim to do that, no matter how bad it all seems.

Will you?

 

13 Scopes Before 30

Crohnically Ill

“Oh honey, if I give you the generic, you don’t get flavor packets.”

“It’s fine. I usually mix it with Sprite anyway.”

“Oh my, have you done these quite a bit?”

“This is number thirteen.”

Lucky number 13… and I’m not even 30!

So since I’ve been around the block with colonoscopies, and it’s IBD awareness month, let me fill you in on my tricks and routines for surviving this not-so-pleasant procedure.

Two Days Before:

Eat light on this day. The less you have to cleanse out of your system, the easier prep time is. Since I’ve been living off protein shakes and one small meal a day, I decided to splurge with my “last meal” and eat a little more than usual. I even threw in some broccoli, the first veggie I’ve touched in ages! However, as I’m not used to large meals, I wrapped up the rest in hopes of finishing before bed. Instead, I passed out. #lame

last meal

One Day Before:

It’s clear liquids time! You may drink any liquid you can see through, but avoid red or orange drinks, as the dye can coat the lining of the intestines, fudging your results. I prefer to live off Sprite and water, but sometimes jello, broth, or gatorades can feel more filling, so it all depends on your preference. I go to work, as I prefer to be distracted instead of sitting at home feeling hungry. But, since my hospital is two hours away, I do have to take off, rush down there, and start drinking prep by 6 pm the day before. Keep some Zofran on hand (dissolvable kind), if you can, to help stave off nausea.

supplies

Prep Time:

Now for the fun part! If you are one of the lucky ones who gets to drink the Gatorade + Miralax & Ducolax pills combo, good for you. If you have to drink the gallon of prep like the rest of us, here are some tips. The instructions read to drink one eight ounce glass every 10-15 minutes over the next several hours. You are supposed to finish up by 10 pm, but for me, that’s not feasible. After about two hours I get extremely nauseated, and sometimes it will all come right back up, which you DO NOT want to happen! If you start feeling sick, it’s better to take it slow. This last time I took an hour break at the halfway mark, then sipped slowly until it was all gone. I finished up around midnight. Pay attention to when your appointment time is, though. If you are booked for first thing in the morning, and you fear it might take you a while to drink the prep, it’s okay to start a little earlier than the given time. This way the prep clears out your system before your scope. Also, do mix with Sprite, or apple juice, or something, because otherwise the prep is horrible. Seriously, I pour a glass 3/4 the way full, then top it off with Sprite. It is sooooo much easier to sip on! I don’t even need a “chaser” to get the taste out of my mouth anymore.

#power

Once the prep is all gone, and your “stool” (more like pee from your butt) comes out clear (by clear I mean a pale yellow), then you are all set! Get some sleep!

Procedure Day:

lets do this

You made it through the hard part! Now for the easy part. I’m sure it’s common knowledge, but have someone take you there, so they can bring you home. There will be a plethora of medical staff coming in and out, from anesthesiology to your GI team, along with nurses coming to ask you a mile long list of questions and to start your IV. If you’re a girl, hold that pee in until you get to the hospital and ask to take your pregnancy test STAT! This moves things along a lot quicker, as the nurse can crank that out and anesthesiology can get you checked off. Then, you wait. Bring something to do, like a fully charged phone or a magazine, because sometimes the staff is behind on schedule.

They will wheel you back to the room, start the sedation process, and hang out by your bedside chatting you up. If you’re like me, you’ll fight the sleepiness, rambling on about work or kids and asking questions and answering questions and…. saying… something… about…

Wake Up!

It’s all done! Keep blinking those eyes open. Ask the nurse for some Ginger Ale. Sit yourself up. It’s hard fighting off that heavy blanket of sleep, but I’ve found when I’m aware I need to wake up, the fog starts to clear. It takes a little while. The anesthesiologist came in to chat me up, and I wanted to text my husband about it, but the result was absolute rubbish. I have to laugh as I know what I was trying to say, but instead this came out…

text talk

Yeah…

It’s okay, within the next twenty minutes I was texting coherently.

Still when the GI came in to give me my proper results, it took a lot of me asking the same questions over and over and focusing really hard on his answers to let it sink in. Have your friend take notes for you, in case you do forget.

Rest up for the rest of the day! You earned it.

cheers

Invisible Girl

Crohnically Ill

May is IBD awareness month, and to kick it off, I’m here to shed light on the Invisible Girl.

She fits right into any crowd, laughing at jokes, responding when spoken to, working (mostly) like anyone else, and appears to be just that- normal. Truth is, she isn’t. On the outside, you may see smiles, but on the inside, there’s pain. She looks like she walks and talks just fine, but inwardly, she’s fighting with each step to hold it together. Her social media may show a fun day with the family, but no one sees how she crashed soon after, stuck in bed with a bloated stomach and in pain for the next several hours.

That, my friends, is the Invisible Girl, living with an invisible illness. I’ve been told many times “you can’t tell by looking at you.” I mean, I’m glad I don’t LOOK the way I FEEL, because that would be a nightmare, but it can be a challenge when your illness is hidden. For instance, I’ve been in so much pain, that I can’t walk through a grocery store. Stuck in a wheelchair or scooter, I avoid the dirty looks people give me, assuming I’m some kid just messing around.

With friendships, often times I have to cancel or reschedule because of symptoms. This causes anxiety when it’s a new acquaintance. I explain my situation, but I worry they will assume I am just blowing them off. Granted, as I get older this happens less and less, but it’s occurred before. I was told that I wasn’t worth it, because I couldn’t make time for them. Well, I was sick as a dog and in need of surgery. I barely had time for anyone. I know canceling over and over and over grows tiresome for those who are healthy, but it can’t be helped.

At work, when symptoms flare, sometimes I can fall behind. My desk won’t be neat. Papers aren’t filed. I forget to respond to some emails. But people, for the most part, don’t see how hard it is to do what I am doing through the pain and fatigue. They see what I’m not doing. Fortunately, I work with some fantastic people, and they are understanding, but in that past I wasn’t so lucky. I was once told I was faking my illness in order to get out of work. I was pooping blood, bloated beyond recognition, and sat on the floor in tears because it was so bad. It took me bawling in front of customers (which I fought tooth and nail not to do) for the boss man to send me home.

There are times I’ve had to use the handicap restroom, because no others were available, and I just couldn’t wait. Sometimes I’m so desperate I beg people in front of me to let me cut. One time, I was in such a rush I started towards the same stall as an old lady. When I realized we were gunning for the same john, I stepped aside and apologized. Not only did I NOT get a “thank you,” but she gave me a dirty look and took the stall.

So the next time you see a young person in a wheelchair, or falling behind on work, or struggling with school, ask them what’s wrong, because they, too, could be fighting an invisible illness.

Crohn’s + Insomnia = Crohmnia

Crohnically Ill

It hit me, one crohmnia laden night, that there has to be a way to get the message out there to people what living with Crohn’s is like. It seems like every illness out there starts the message off the same way- drama, grief, and a sad, sad tale. Yeah, that’s the truth, but is that what gets people’s attention? The ALS ice-bucket challenge certainly used a hilarious tactic to get the word out, so why can’t we Crohnies do the same?

Introducing my post crohmnia stint YouTube film: https://www.youtube.com/watch?v=dnhfO52g5LA

The quality needs work; I’m well aware. I have new tricks to learn, more webisodes to hash out, and more embarrassing territory to explore, but I’m suddenly determined to do it. Will it get the word out? Maybe. I hope so. Either way, my kids and I are having a blast sketching out new scenes (we have an idea jar), and these are memories worth making with them, whatever may happen with The Crohmniac. So, for now, enjoy, and hopefully this will become a weekly thing, with better video quality and tighter jokes. The occasional serious vlog may creep in, especially on my down weeks. Regardless, I love telling stories, and I never realized how much I love a camera, especially all the editing tricks available. This wannabe geek has a lot to learn! So stay tuned, subscribe if you like, and I hope you enjoy!

The Glitch

Crohnically Ill

The Glitch

 

I always knew I had a glitch

A missing piece, a broken part,

A hairline fracture, something off-

Cause I never ran quite right

The doctor’s news gave no shock

Just proving what I knew-

I’m broken, damaged, a factory recall

And I’ll never run quite right.

Some days my glitch don’t matter-

I still leap and grasp at stars.

But others I’m tired,

Still other I’m beat

Enough to break under my scars.

Pain is no rarity,

Just daily routine.

It’s weakness that unsettles me,

That creeps into the rest of me

Twisting, wearing, tearing,

Shifting my existence.

Then this causes worry-

What if my glitch ain’t no broken piece

But the other way around?

What if the glitch is me,

And I’m the reason my part won’t work?

If I were born a hundred years ago

My glitch woulda plucked me from selection,

Cause it ain’t natural to keep running wrong.

I shouldn’t be here.

I shouldn’t pass my glitch on, either.

The human race don’t need glitches making more glitches.

But I guess I’ll just keep running

Even though I don’t run right.

You. Kick. Butt!

Crohnically Ill

While scrolling through posts on #GetYourBellyOut, a UK based support group for IBDers, it astonishes me just how strong we all are, and we don’t even realize it! Yeah, life is tough. But far too many people with IBD deal with the crap of life AND a chronic illness. Sure, it affects us to different degrees, but that struggle is still real.

Pushing through a work week while feeling like death? Done.

Taking care of kids, loved ones, being there for friends, all while wishing you had two seconds to take care of yourself? No problem.

Handling various crises from financial to personal? Sure, bring it on.

Okay, so we don’t always do it with finesse. We may whine, and pout, and kick and scream and shake our fists crying it’s not fair. But once the tantrum is over, we get up, dust ourselves off, and keep going.

Does anyone realize this can be a rare quality? Do you ever listen to “healthy people” problems and think “gee, wish that was all I had to deal with?”

Don’t get me wrong, I’m not minimizing “healthy people problems,” as everyone’s struggle is real. But I just want you, the chronically ill, to take a moment and appreciate your strength. So what if you don’t FEEL strong? Fighting through pain, nausea, bloating, vomiting, fatigue, joint pain, side effects from medications, various procedures, surgeries, the list goes on and on and ON…you push through that AND the muck of life. So for that, I say, bravo. Recognize your own power.

For those of you feeling beat down, low, and just sick of it all, this is for you. You can do ANYTHING you set your mind to! I know it can seem impossible; I know it sucks. And you’re certainly allowed to feel all the dark emotions you are experiencing, but I just want to remind you it will get better. Half the battle is our attitude, and positivity is a powerful thing. Yes, it only goes so far, but attitude is the one thing we CAN control throughout this illness. Crohn’s may control my body, but I’ll be damned if it gets to control my mind, too.

I find it helpful, when I get down, to block out a specific amount of time when I’m allowed to feel dark and stormy. I lie in bed, binge watch TV, write crap poetry, or play piano. At the end of that period, be it hours or days (depending on how sick I am), I get up, get dressed, and readdress the world ready to take it by the horns. We must allow ourselves to feel the emotions associated with this disease, but we must also learn to pull ourselves out of it and enjoy life.

What about you? What is your coping strategy when dealing with IBD?

#nopainnogain

Crohnically Ill

After a day of jelly legs, followed by an insomniac night, I dragged my semi-recovered body back to gym. Granted, the short walk from our apartment building there made my legs burn, but I still did it. I managed to pump some iron for a bit until I had to bolt out of there with #bellyissues.

They say no pain no gain in sports training, but for us Crohnies, or anyone with a chronic illness, that’s not entirely true. Overdoing it in my case can incite a the evil flare to rage harder, so taking minuscule baby steps is necessary. Do I wish I could go book it for 3 miles a day? Um, yeah! I used to do 7, and now just one would kill my stomach. I would love to participate in Crossfit workouts, pushing my body to the max, getting stronger by the day. But with this body, it’s just not feasible. Not at the pace of a normal twenty-eight year old, anyway. Maybe not even ever. But that’s okay, because the fact I even made an appearance in the gym twice this week is a victory for me. And I’m gonna celebrate!

#crohnsfighter

Crohnically Ill

Going from track star to THIS AWFUL BODY took years of highs and lows, and while I feel infinitely stronger mentally, my body isn’t a fan. When I took my stepson to the trampoline park a few weeks ago, it shocked me how exhausted I felt just from ten minutes of bouncing around. While he scaled the ninja course with ease, I had to cling on for dear life.

The problem with Crohn’s and staying fit is the unpredictability. It seems each time I finally set a routine, finally start the path to getting in shape, Crohn’s pushes back and knocks me down. So, I dust myself off, get back up, start over, only to get knocked down again.

Living with a stricture makes eating right impossible for now. Low residue diet keeps stool passing through to a minimum, but that requires eating crap food like mashed potatoes, toast, white rice, pasta, etc. Forget the fruits and veggies! I know, I shouldn’t complain because my weight isn’t terrible, but it’s the principle of the matter. I would be someone different, physically speaking, if it weren’t for this disease, and it’s a constant mind game.

So, that being said, I’ve decided enough is enough. I WILL keep my body strong, even if it means doing bare minimum, or nothing at all when I truly can’t, but getting back up sooner than I have been. Will I get knocked back down again? I can count on it. But I’m done with the pity party. I don’t care if it’s walking, yoga, a few stretches, ANYTHING. I’m fighting back, and maybe I’ll land a punch on Crohn’s for once.

I’ll keep you posted, along with random thoughts, tidbits, or advice I may have. Just depends on the day and my mood.

And if you are wanting other tidbits, check out Crohn’s Knows @ https://crohnsknows.wordpress.com/

The author is some trivia crack genius…:( And apparently knows about Crohn’s.

Know Your Doctor

Crohnically Ill

“How have you been feeling since your last dilation?”

“Not good. I’ve had pain, bloating, and more diarrhea.”

“Hmmm. That doesn’t sound right. I didn’t think you were having pain with this scar tissue stricture.” He shifts his stance, cocks his head, and narrows his eyes at me.

What does he mean “that’s not right?” But I AM having pain. And tons of bloating. I looked friggin pregnant the other day.

Oh. Well I’ve been bloated a lot lately.” As my confidence gets sucked through my IV…

His hands come out of his pockets, gesturing two stop signs. “Okay hold on. Take me back six months. Describe your symptoms when all this started.”

Wow, didn’t realize I entered a court room drama.

“Okay. Well, my bowel movements were very up and down…”

“And then we did the first dilation.”

“Yes.”

“And then what happened?”

The cross examination continues with me detailing my bowels, pains, diet, etc. etc. until present day, the day of my third scar tissue dilation. In a half hour he would be sticking a camera up my bum. But right now he’s scaring the crap out of me with all these questions.

“Well that doesn’t sound right. You shouldn’t be having these symptoms with a scar tissue stricture.”

I really should be more confident as a person, but after an awful night trying to hold down prep, no food, burning stomach, and exhaustion, I thought he meant I was wrong to say I was having my symptoms. No, I should have understood he meant “gee looks like Crohn’s is back let me take a look.” No, I didn’t think that for one second. I sit back on my bed, unable to hide my pouting lip and glum eyes. He awkwardly takes his hands out of his pockets, then shoves them back in.

“I know it seems like we’ve been speaking in tongues here, but I don’t worry. I think we understand each other, and I think I know what I’m looking for.”

Do we? Because I feel like I’ve just had an entire conversation in Russian! He walks off, leaving me to let the waves drown me in utter depression. Nurses bustle in to ask more questions, and I just can’t keep the tears out of my eyes anymore.

“Excuse me, but is it too late to use the restroom?”

“Sure honey, let me just unhook your IV.’

Nothing sexier than running down a hallway full of people gripping the edges of a hospital gown in one hand and an IV bag in the other. I didn’t have to use the bathroom one bit. As soon as I shut the door, mascara floods my cheeks. Why the heck did I put on make up that morning? I don’t know how long I sat in there crying, then yelling at myself for crying, then crying all over again because I was that wuss that was crying right before her procedure. What’s wrong with me?

Settling my breaths, I take a good long look in the mirror- at someone who had just finished a week long bender- eyes red, puffy, and majestically disgusting. I’m certain the crew was ready to take me back, so better to get it over with…

I wake up to my doctor standing awkwardly in the corner of my recovery room. Must he always appear so stiff around people?

“Well, it seems like every time we go in I find something interesting. You have active disease on the other side of your scar tissue stricture.”

And I burst into tears like an absolute nitwit…

The moral of this story is to not to make you hate my doctor, because in truth he is excellent at his job. However, not all doctors are created equal under the sun. They are people too, and not every person is great at what they do. No offense to doctors here. In order to protect the privacy of the medical profession, I will refer to my current and past GI’s as doctors 1, 2, and 3. 3 being the most recent.

Let me call Doctor 1 to the stand. He did not specialize in Crohn’s Disease, refused to take my illness seriously by continuing to treat me the same way regardless of my lack of improvement, lacked people skills (he winced when he gave me my diagnosis), and did not promote advocacy of my condition. He saw my disease as a mild, treatable condition, and was confounded with me, the patient, when I did not get better. So I moved on to Doctor 2.

Doctor 2 had the advantage of also having Crohn’s, was incredibly friendly (even called me from his personable number to check on me), and of course was knowledgable. I will say, he was an unorganized man, but still kind and easy to talk to. I felt comfortable explaining my symptoms and having at-length conversation with him. His appointments with me also made him run over into appointments with other patients (oops!). But he had to move, leaving me in the care of Doctor 3.

Doctor 3, while socially awkward and difficult to speak to, is incredibly thorough, knowledgeable, and focuses 100% on treating the disease. This focus, however, makes me sometimes feel like a grand experiment instead of a person. While in the beginning I misread his 20 questions as being confounded with me, I learned he’s simply gathering the data to better understand how to treat my illness.

The crux of the matter is, when selecting a doctor for your IBD, (or any doctor), the most important trait he should have is the ability to treat your illness. If he isn’t thorough, or up to date on the latest treatment options, then he may not be the right doctor. Yes, friendliness and bedside manner make some doctors more appealing, but as long as the doctor is also knowledgeable and thorough in treating the disease. Certainly, if a doctor is treating YOU as the problem and NOT IBD, then a second or third opinion is needed straight away.

A final piece of advice is to bring a trusted family member or friend with you to your appointments, if possible. Going into a doctor’s office while feeling sick, grumpy, and out of sorts makes it difficult to judge a doctor’s character and abilities. I left my first appointment with Doctor 3 hating him, while my mom couldn’t stop talking about how much she loved him. And, heaven forbid it’s a worst case scenario, your loved one can be your advocate when dealing with a not so pleasant medical team.

Never be afraid to speak your mind, and never be afraid to get a second opinion. Your health is far too important.

As for me, I will strive to cry less in my hospital gowns and behave not as neurotically around my medical team.

Happy Doctor Hunting!

K. Z.

 

 

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Shake Off the Hate!

Crohnically Ill

Post ALS ice bucket challenge, as post anything mainstream media, there is quite the back lash. image

“We are wasting clean water.”

“Not enough people suffer from ALS.”

“People don’t even know what ALS is.”

Well this ruffles my feathers, and this is just the beginning. I’ve been promoting #GetYourBellyOut, an awareness and fundraising campaign for IBD, which I suffer from. I posted about this in the comments of a friend’s page, who happened to be complaining about the ice bucket challenge. A third party got on and asked me questions about IBD, and I responded. To which, my supposed “friend,” replied on his feed (bleeping out the language)

“How about just %#^#*ing pay attention and donate instead of #^#*#*ing have the media involved? I’m sick of this {%^*. If I had cancer I wouldn’t want people donating cause of media just me this is #%#^}*{*. IF YOU DON’T LIKE IT STAY OFF MY #%{^{*ING PAGE!!!”

I kid you not. Still not done. Another person, in reference to ALS, says:

“There are WAY more life threatening and cultural issues going on in this world than #^}*}*ing ALS. Seriously, omg…Cry me a river. There are MILLIONS without clean water or food every second in this world. There are entire villages and religious groups being slaughtered globally, and you want  to talk about a disease that affects 5-6K people a year?”

Wow. Are you kidding me?

Why all the hate? One thing at a time here.

To the first “friend” saying if he had cancer blah blah blah. It’s oh so easy to throw that around. No, you don’t know what it’s like to live with an illness that affects you daily and has almost killed you multiple times. If you did you would want plenty of awareness and research occurring to help produce more effective medicines and even a cure. Really? Upset because I’m discussing it on your page? Aren’t there worse things we could be talking about? And I’m sorry what better way is there to raise awareness besides media?

To the second, here’s my issue. One problem is more important because it affects more people? What if that issue affected you? Would it still be less important because it affects less of the population? And again, you are PISSED BECAUSE PEOPLE ARE DOING SOMETHING FOR A GOOD CAUSE?! We aren’t talking about Kim Kardashian’s clothes. We aren’t sharing the latest Miley video. We are talking about something, for once, worthwhile. Can we pick up on this trend and spread it to other issues that maybe I dunno affect more people? Let’s use some creativity. I’m no idiot. I know there are “worse” problems in the world. I get it. But at least the media is starting to take notice. No not the news- I mean social media is taking notice.

What do people check more in a day? CNN, Facebook, Twitter, or Instagram? Bet you the last three get logged the most time. And those ice bucket challenge videos are all over them. Shouldn’t we be wiping our foreheads in relief that people want to talk about and do something positive instead of setting themselves on fire? Of course there are people doing the challenge clueless as to what ALS is. That’s bound to happen. Yes not all organizations put enough of the donations to research. Of course it’s wasting water. Do like Matt Damon and pour toilet water on yourself. He still supports ALS AND makes his point known about clean water. He doesn’t hate.

Do you want people talking about something other than ALS that’s important to YOU? Get creative! Do something!

I want people to know about IBD so they can be understanding of this disability just like we expect people to be understanding of anything else. This is an invisible disease. One glance at me and you wouldn’t understand why I’m begging to cut in line at the restroom, or why I’m using a wheelchair through Walmart. No not everyone dies from Crohn’s. But some do. And those of us lucky enough to live with it don’t lead normal lives even though WebMD would have you believe it’s a cake walk.

ALS is a terrible terminal illness. My friend watched her mother slowly pass from it, and this was devastating for her family. I’m not going to tell her or the 6K patients/families affected “cry me a river.” They aren’t less worthy of our attention and donations because they are fewer in number.

I get it. We can’t all jump on every band wagon that passes by, and there are some bigger band wagons than others. My point is shouldn’t we be happy that people, in general, are finally taking notice of the band wagons to begin with? The ice bucket challenge was genius. Let’s be thankful that for once, a terminal illness is trending along with Iggy’s beats. It may not be the step you want, but it’s a step in the right direction. Shake off that negativity.

Finally, in the words of Don Draper, “If you don’t like what’s being said, change the conversation.” Change it to something that is important to you, but subtract the negative attitude, or no one will listen.