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

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Why Some Of The Press My Blog Received Really Hurt

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Awesome post written by a strong, new ostomate, who won’t let media or stigma get her down.

It’s been 4 months since I had my ileostomy surgery. And it’s been a tough four months, mentally. I know I come across as being extremely confident with my stoma and I haven’t let it affect my day to day life, but in some cases, I feel it’s isolated me and there have been occasions where I just wish the whole thing hadn’t happened. These reasons aren’t really to do with my stoma either, but to do with how it’s effected my working environment and my relationships with people.

Before I had my surgery, I was working in media and spent my days in an office editing photos and dealing with press. It was fun – I’d always wanted to be a journalist and although I have written for a few publications, I hadn’t actually had any paid writing work. This job for me was a step up the ladder…

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My Face on Things

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Max Wirestone

Of all the strange occurrences that occur on the road to publication, the one that I can least wrap my head around is that apparently my face is going to be printed on physical items.  ie books. This is not a thing that should be happening in the real world. This is the sort of development that belongs in a YA dystopia.

Also, it feels like my face should lower the market value of the objects it is imprinted upon.

“How much is this book,” asks a potential customer, turning it over and observing my scowling visage.

“20 dollars even,” answers the bookseller. “You should get it! It’s an excellent read, and was once described by Devi Pillai as ‘fucking hilarous.'”

“Maybe,” says the costumer, considering the abyss that is my hairline. “How much is one without the author photo?”

“$26.99.”

“Just this once, let’s go with the upsell.”

And…

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No Fear

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Living with Crohn’s can emit a number of fears.

Will I ever get better?

Will I always feel like this?

Will I be around for my loved ones?

Will I have another obstruction or worse, a perforation?

Will I die?

It’s easy to crack under the stress of this disease, especially if it’s difficult to manage, and one’s support net isn’t that strong. Even one’s brain chemistry can predispose them to a variety of mental health issues, to include anxiety and depression.

So, I must say, I certainly don’t judge anyone who struggles with fear, because I know it. I spent hours sat in hospital waiting for a procedure the doctors told me were highly likely to have serious repercussions. I had just had two surgeries, one in an emergency setting, lost twenty pounds, and had barely regained my strength. Could my body take another mishap? As hours ticked by, the head games were painful.

However, I do value facing one’s fears head on. The way I see it, Crohn’s may be able to control my body, but it isn’t allowed to control my mind. I won’t let it cripple me in fear, leaving me depressed or in a constant state of anxiety, because to me, that is no way to live.

Mental illness is a very real issue, and those who struggle with it should be medically treated. I firmly believe that, so I don’t wish to speak for those who suffer from mental illness. I speak only for myself.

I do encourage you, fellow crohnie, to face your fears. It’s easy for this disease to wear down on your mind. To be honest, these last few months have been playing at me, and I haven’t been mentally facing my inner fears. But today was a good day- the first one in a while, and at the end of it I’m realizing I need to buck myself back up and face the pain and anxiety head on. Worrying about if this treatment will work or not does nothing. Stressing if I will ever achieve remission does not get me there. So yes, there’s plenty of pain and discomfort to be had, but I can have it with a positive attitude, enjoying what I can of the world around me. There in lies the true victory.

The Dark Side of Crohn’s

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What you see is not what’s happening. I put on a positive face. I post pictures of me grinning from ear to ear while awaiting the latest colonoscopy, or hanging out in a hospital. I cheer others on to keep fighting, never give up, and enjoy life to the fullest. Everyone says “You look so great!” “You’re so brave and strong!”

I don’t feel brave.

I don’t feel strong.

I just refuse to show it.

Well, here I am, unable to sleep, in pain with nothing to relieve it, and I’m tired of hiding. Guess what, world? This SUCKS! I may smile, and say “it’s okay,” and act all positive, but you don’t see me when I’m alone. When there’s no need for pretense or social norms, I crawl up in bed and cry. Yes, me, I cry. I get pissed. I lie here and think what’s next for me? My Crohn’s does NOT seem to get under control even though I’m on high doses of the “best medicines” available. I’ve gone through Cimzia, Humira, I’m allergic to Remicade but maybe I can try it again, and Entyvio is new, but what if those last two don’t work? What if Prednisone, meant for a temporary fix, still can’t do the trick? Is this my life? How bad will this get for me? I’m not even 30, people! I haven’t hit 30 and I’m somehow running through these drugs faster than the friggin’ roadrunner escaping a coyote. I’ve been on Humira since what last November? December? They increased the dosage end of January, and my Crohn’s is SPREADING?!

No, I know, I’m not bad off yet. It could be worse. I already know what worse is like. I see other people dealing with worse. And it’s not that I’m afraid of dying. I’m afraid of living a long, painful, useless life. What if I’m too sick to enjoy the world around me, permanently? What if I can’t be for my grandkids what my grandmothers were to me? Will I be too sick to give them their first surfing lesson, or take them shopping, or go to a trampoline park? Will I have to stop doing everything I love? Because, that, to me, is the real fear. Welcome to the dark side of Crohn’s.

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.