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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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.

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!

Love the Ostomy Bag, CDC

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“Get over being squeamish,” says Julia in the CDC’s latest anti-tobacco campaign.

Funny, the CDC certainly isn’t squeamish about stigmatizing all ostomates in their efforts to convince smokers to quit.

http://www.cdc.gov/tobacco/campaign/tips/stories/julia.html

Much like the other anti-tobacco ads, this one paints a stinky, disgusting picture of one of the many ramifications of smoking- developing colon cancer and having to live with an ostomy bag.

Unfortunately for the CDC, far too many people who live with ostomy bags never smoked a day in their lives. And too many more SHOULD be getting bags to treat their non-smoking related conditions but either refuse to, put it off, or would “rather die” thanks to an already existing negative stigma now worsened by the CDC.

Do I smoke? No. I find it disgusting, and I sometimes have little mini inner fits when I see people light up, because they have their health and are CHOOSING to throw it away. I’m 28 years old, have had 3 surgeries, been on countless medications, live the majority of my days in pain, and I would LOVE to have my health, but I don’t, through no fault of my own. I listen to my doctor; I take my medications as prescribed; I follow a low residue diet religiously as it’s the best for my condition right now, yet no matter what, I’m still suffering, because this disease is a tricky bastard.

People who smoke take what they have and throw it away, one puff at a time. But that is their choice to make, not mine. They are free to make their own decisions. The CDC wants to make their decision to light up a less lucrative one, but at the expense of stigmatizing those living with ostomies.

Am I gross? Did you know I had an ostomy? I take care of myself, yet I had to empty my bowel contents multiple times a day. No, I’m definitely not squeamish, but seeing myself and my fellow IBD friends stigmatized for the sake of convincing those who smoke to stop is more disgusting than my bowel contents chilling in a bag.

The average age of diagnosis of Crohn’s Disease is 12-25. A young person, on the brink of the most exciting years of their life, is now sick, and often times faced with either the choice of an ostomy or being forced to live with an ostomy (via emergency surgery). As a young person, the thought of having an ostomy is terrifying, but the problem is it shouldn’t be. The bag is not only life saving, but improves your quality of life. I used to be terrified of it, until I woke up with one. Yes, it’s gone now, but if I’m presented with the choice of living a painful life without a bag versus a less painful one with, I’m opting for the bag. If I wake up from another emergency surgery sporting a stoma, I’m going to name it this time. I want other young people out there to not hold a fear of ostomies, especially if one may be in their future. I want those living with them to be seen as fighters, not scum of the earth. I want this campaign removed, because it has set back all the hard work of advocacy those people living with ostomies have tried to obtain.

The #GetYourBellyOut campaign going on in the UK embraces bellies of all kinds- scarred, bags, no bags, bloated, thin (from malnourishment thanks to our disease), healthy (because yay! remission!), etc., and this campaign was a giant leap forward in not only getting the public to accept ostomies, but those living with them to accept it themselves.

No, don’t smoke. But don’t vilify those with ostomies to get your point across.

To sign the petition, click here:

https://www.change.org/p/centers-for-disease-control-and-prevention-remove-tobacco-colon-cancer-advertisement?recruiter=39512192&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=mob-xs-share_petition-reason_msg&fb_ref=Default

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?

#GetYourBellyOut World IBD Day

Crohnically Ill, Uncategorized

The evil Crohn’s monster has enjoyed stomping on my life for the past 10 years. Sadly,  many people suffer from IBD at much younger ages, the most common age of diagnosis ranging from 12-15, yet this doesn’t exclude littler ones who deal with it from elementary school age or even birth.

I’ve spent my twenties learning to navigate this disease while becoming a teacher, wife, and stepmother. Many times I’ve broken down because I can’t be all that I want to be in every category BECAUSE of Crohn’s disease. “But it’s not your fault. Don’t beat yourself up.” So? I don’t get to live the fullest life because I’m sick. And oh yes, I’m sick. Pain, nausea, vomiting, diarrhea, constipation, fatigue, a decrease in a sense of well being, depression…it’s a rocky roller coaster. And again, I’ve only had it since 18.

This is not a bathroom disease alone. It’s not IBS. It’s incurable. And in some cases, it also causes death. Not all patients respond well to treatments and have severe cases of the disease. Post resection surgery, my bowel leaked and I nearly died from septic shock, and what followed was a long, harrowing recovery. Yet it feels like we suffer in silence. Do you have any idea how it feels to be an island?

Then I started hanging out on twitter, and decided to look up #crohns. I started connecting with people. Belly pictures with #GetYourBellyOut flooded my feed. Tons of photos of scars and bags and tattooed bellies and plain bellies were taking over, all in the name of awareness and fundraising for a cure!

The girls started a Facebook group, where all of us IBD sufferers can update, vent, have a laugh, WHATEVER WE WANT. We give each other advice, cheer each other on, and celebrate victories together. These 4 ladies and everyone else on the page have changed my life, and I don’t even think they realize it. Who cares if they are across an ocean in the UK? I finally feel UNDERSTOOD. And after 10 years of solitary confinement, that’s an incredible gift.

But I didn’t just find friendship. Oh no. It doesn’t stop there. They gave me the push to become involved with donating for a cure. In the past month, I’ve done 3 things I should’ve gotten off my butt to do a long time ago:

1. Joined ccfa.org to be a part of their widespread research on IBD. All it took was a short survey, and they check in with me every 6 months. Seriously no skin off my nose.

2. Joined the take steps walk for a cure and created Team Zahmbies, as well as making my donation.

3. I’ve been POSTING on Facebook and twitter facts about what life is like with IBD to spread awareness, as well as links to current ccfa research, and asking people to join Team Zahmbies and/or donate for a cure.

That last one is huge. I abhor asking people for money. But this isn’t for me personally. It’s for a cause, to learn more about this debilitating illness and find a cure once and for all. World IBD day is May 19, and YOU can help by donating at:

Canadians (or anyone): http://m-crohnsandcolitiscanada.akaraisin.com/8016/participant/1719474?lang=en-CA (This supports my Candian buddy Justin’s Gusty Walk for a cure who’s had Crohn’s Disease since age 12.

UK (or anyone): http://www.justgiving.com/teams/IBDAwareness/eurl.axd/80c36e35de4c4d4a92037ff638b55479

Last but not least, you can support or join me for my Take Steps Walk for a cure happening in Columbia, SC September 28 at Saluda Shoals!

US (or anyone):http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-Carolinas/1063772085?pg=team&fr_id=4309&team_id=156941

#GetYourBellyOut

Crohnically Ill

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I recently participated in the #GetYourBellyOut campaign on twitter, an IBD awareness and fundraiser movement originating in the UK, but has now gone global. IBD patients from all over are posting and tweeting pics of their bellies, whether they are clean, scarred, or bagged (even double bagged); we are showing the world what IBD looks like by getting our bellies out!

In light of the recent #nomakeupselfie campaign done to raise funds for a cancer charity in the UK, Sahara, a Crohnie, chose to post a pic of her belly on the internet (quite a brave, bold, step). Another UK Crohnie, Victoria, followed suit, and the two embarked on the #GetYourBellyOut campaign.

This campaign has gone beyond awareness and fundraising, and has connected many people with IBD globally.  Thanks to this I now have international IBD buddies:) A group was also started on Facebook, where we can post our stories, ask questions, and give or receive advice from each other. It’s overwhelming to see the empathy and compassion from everyone else, and I no longer feel like an island. We are in this together, fighting the good fight and cheering each other on. It may not be a cure, but it’s an emotional bridge never before built. Thank you, ladies, for bringing us together, and giving us the courage to get our bellies out!

If you would like to learn more about this campaign, please see the links below:)

http://colitisandme.blogspot.co.uk/2014/03/getyourbellyout.html

http://justgiving.com/teams/IBDAwareness

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