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.

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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.

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

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.

Don’t just #GetYourBellyOut -pass it on!

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image

If you haven’t noticed the belly photos flooding social media and even news stories (heard of Bethany Townsend, for instance?), well now you know. It’s all part of an IBD awareness campaign called #GetYourBellyOut.

If you have noticed, well we are about to kick up the awareness campaign a thousand more notches.

IBD stands for Inflammatory Bowel Disease, which encompasses Crohn’s and Ulcerative Colitis. Both diseases are life changing and at times lethal. I myself came close to leaving this world at 25 due to complications from Crohn’s. And while I’m still alive and even in remission, I lead no normal life. Having a weakened immune system causes fatigue, and even in remission my “normal” is actually a roller coaster of symptoms, just not within the range of a flare. I get tired easy, my body reacts more dramatically to stress, and there is the matter of anxiety over the bathroom. So there’s my blurb about this disease.

Onto the campaign…in light of recent campaigns that have gone viral, and for good reason, the #GetYourBellyOut team has decided that instead of just asking people to post pics and donate (because let’s face it-asking and asking doesn’t exactly get you anywhere), we will pass it on by getting family and friends involved.

It’s so easy. Easier than getting a bucket of ice water dumped on you (although that was fun!). Just post a pic of your belly, donate to ccfa.org (or ccfa.uk- this campaign originated in the UK), and pass it on to someone else.

Why?

Because 1.4 million Americans suffer from IBD, and more than 5 million people worldwide, that’s why, and it’s on the rise. The average age of diagnosis with Crohn’s is 12-15 years old, although I’ve even seen children posted on social media wearing ostomies or in hospital with the dreaded NG tube hanging from their noses.

So come on, post your belly to facebook, twitter, or Instagram (or all 3), donate, and pass it on! Don’t be shy. You should see the many bellies on our page. Do it! #GetYourBellyOut.

(Founded by Sahara, Victoria, Lorna, and Gem who have changed my life, built a worldwide community, and are still rocking it even though they are four sick gals!)