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.

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

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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Crohnic Love

Crohnically Ill

It’s no typo people. I’m here today to discuss relationships and IBD, and that ever elusive ideal we all chase called “love.”

On GYBO (#GetYourBellyOut) I’ve noticed a few posts concerning partners and IBD. While I’m no relationship guru, I’m full of ideas and opinions on this matter since diagnosis over nine years ago.

First and foremost, if someone truly loves you, I mean TRULY loves you, IBD, ostomies, scars, etc. WON’T matter to them. Not one bit. Of course there are grey areas and certain circumstances, but bottom line, your mate will be your caretaker, your support group, your cheerleader, nurse, your driver, your confidante, your advocate, your dearest friend. If you don’t have these things, ask yourself why. Because you deserve them. Do you hear me? YOU DESERVE to be loved.

Second, not everyone is cut out to be a caretaker. Honestly, it takes a special person to learn to change an ileostomy bag and sleep in hospitals and go to countless appointments and deal with prednisone induced mood swings. It does. Not everyone is cut out for it. If you don’t think your partner is made for the job, and I mean honestly not made for it, have an honest chat about it. It’s no slight to you. It’s no slight to them. It’s about doing what’s best for both parties.

Third, there are good partners and crap partners, IBD just happens to highlight just how crap a certain partner is. Hindsight is twenty-twenty, but looking back I see how awful, I mean AWFUL my previous relationship was and having Crohn’s just showed me I was wasting my time and emotion. More on that in a bit.

Final point, before I get to the nit and grit of my personal life, don’t give up on love or feel you’re unworthy or that you can do it alone. Certainly, you can do it alone. But should you? If the right person came along, would you be open to it? It know it’s hard to meet people when sick. First, you can hardly get out there and second just when do you bring up your condition? Not exactly a dinner topic. But it can happen. It requires a pinch of effort, dash of bravery, and an ounce of openheartedness to create the right conditions for finding love.

How to know if your partner ISN’T the one?

Oof, hard problem. You would hate to push someone away because of your illness. And you would also hate to make them stay out of guilt. But how do you know it’s right? All I can say is brutal honesty with yourself. If I had been brutally honest, my ex wasn’t worth my time. On my first birthday as a couple he stood me up, wouldn’t answer my calls, and when he did said he had reservations at a restaurant and gave me the time. I met him at said restaurant at said time and said restaurant was closed for the evening. I chalked it up to him being young and distracted as his dad had recently passed. Over the years I chalked a lot of things up to those kinds of excuses.

Then one day I went in for an infliximab treatment and suffered an allergic reaction that required IV steroids and tons of Benadryl. When I woke up feeling like an entire high way of semi-trucks had rammed my head, they told me to find a ride. Of course I called my boyfriend. No answer. I felt so embarrassed in front of the staff. I mumbled some excuse and called again. No answer. I was groggy, sick, and alone. Totally alone. When he finally DID answer he told me he was taking his mom shopping and to call someone else.

Well I was out of it, miserable, and completely upset. Who should I call? I couldn’t think of a name. Not a single name. I have friends to this day I know I could have called then and they would have been there in a heartbeat, but I couldn’t think of their names. I signed a waiver and drove myself home.

And then, five years much too late, I ended it. I cut the cord, cold turkey. He wasn’t happy. He called my friends. Why? Why did he even care? He wasn’t there when I needed him. He showed up hours, and I mean hours late. His own family complained he was always late and it’s disrespectful. He didn’t like we couldn’t go out as much because of Crohn’s. I didn’t much like going out with him and his brother listening to Arabic all night sitting by myself. I speak a second language and I find it rude.

So you see? Outside of IBD, this relationship was total crap. And he wasn’t made to be a caregiver. At least not to me. Honestly, it wasn’t working. I JUST HAD TO BE HONEST with myself, and I think that is the hardest part. The brutal honesty.

Meet my husband. He’s made to be a caregiver. When we met he was a single dad of four kids. What’s a sick wife? Night and day from my ex, sorry to do the comparing bit here. I knew I was loved. I knew I was valued. And I knew I would be cared for. Not selfishly, just knew he was made for this.

Soon after marriage, the “fiasco” as I call it, occurred and he stayed by my side, driving two hours at a time to check on the kids then check on me. We had family close by which helped but he was by my side, learning the names of my medicines, the cords hooked up to me and why, and learning to disconnect them so we would be ready when the nurse could come to help me to the bathroom. No waiting on her to unhook a thing because my husband did it. And if a nurse treated me like a pincushion he spoke his mind. He changed my ileostomy long before I did, prepped the kids and got them all excited before I came home. They thought my little “cherry” looked cool and were happy I was alive.

And this is my point. No one is perfect. Yes, my ENTIRE FAMILY gets annoyed with Crohn’s. “Is Crohn’s putting you in a bad mood? Is Crohn’s the reason you won’t go to the store with us?” I get it. It sucks. IM FRUSTRATED TOO!! But it takes us communicating to sort this frustration out and move on. A good partner will do that with you.

Remember, you deserve love. You deserve to be happy. Don’t settle, and don’t choose to be alone just because you don’t wish to burden yourself on someone else. Hey, if you prefer to be alone, that’s fine, too! Sometimes I think maybe I should just be by myself and not have to let my IBD affect anyone around me. But that’s impossible. I would have to live in a cave. And I hear the toilets there are awful so that’s a no go.

My point is to not sell yourself short, but to be honest and open, knowing what you want and having the courage to go after it. Life sucks enough with IBD. It sucks less when you have someone who loves you that let’s you lean on them from time to time.