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

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How Crohn’s Saved Me

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This weekend, my oldest stepson totaled his truck. Yes, the accident is technically his fault for following too close, something we have warned him about. But it’s quite the hefty life lesson. His baby, that he saved up for, spent months researching, and finally paid for with cash, is near dead (we are still hopeful!). Watching him having to learn the hard way really sucks. I know how he feels. No, I never cared so much about a vehicle, but I know what it’s like to be young, make mistakes, and pay for them. Some mistakes cost more than others. But, I do know, without Crohn’s my life would be different, and I honestly believe it would be for the worst.

Yes, it’s quite the odd sentiment, seeing as Crohn’s has almost killed me on several occasions. I spend a large portion of my life in pain, bloated, skipping meals, cutting out the foods I love, waking up in the middle of the night to run to the bathroom for hours on end, and giving up time with people I care about due to fatigue. Most of the time I hate it. I mean who wouldn’t? But some days I wouldn’t trade this part of me for anything, because it has shaped me in ways I don’t see otherwise possible. The parts of me that grew from the scars Crohn’s gave I can’t see living without.

Rewind to age seventeen, geared and ready to take on adulthood with gusto. The world was my oyster. What would I do with it? Why, attend a college not too far from home, going to my parent’s sister church every Sunday, and falling for a Muslim guy in the process. Oh right, and failing miserably at my college track career because, well, I was sick with Crohn’s and didn’t know it yet. The Muslim first love and my religion butted heads, resulting in me being a stubborn teenager and paying for my own school.

So there I was, sophomore year, working, in school, sick as a dog, on the outs with my family, dating a guy who didn’t give me the time of day, and oh right, no longer on the track team (by choice), and it was one too many life lessons at once. No, I couldn’t handle the pressure. As much as I wanted to be that responsible, put together adult I envisioned in my head, I instead skipped classes to hang out in my bathroom while binge watching Grey’s Anatomy (until the show went downhill of course), worked just enough to pay the rent, but definitely not anything else, failed some courses, got fired from a job, pretty much did all the things I never thought I would do. Me? Fail? Me? Get fired? Me? Be an absolute train wreck of a person?

So I crashed. I did get the diagnosis that year. And the medications didn’t work. The doctor chalked it up to him assuming I hadn’t taken them. Had I? Oh that’s right, when he prescribed the new meds, he didn’t specify he wanted me to continue the old meds as well. Even my mother thought he meant we were SWITCHING, not adding onto the list. Yeah, all the gray heads in the waiting room should have been my first clue Crohn’s wasn’t his specialty.

I got depressed. Yes, me, depressed. I can’t relate to someone who suffers from clinical depression, as this was directly related to my health. Fatigue is a sneaky, formidable enemy, sucking away at the corners of you while you are left wondering what is your problem? Why can’t you do anything? Why are you such a waste of a person?

Then one day I woke up. ENOUGH! No one is going to get me better except me. I changed doctors. I demanded better treatment. Suddenly I was a researching fiend, gaining all the knowledge possible on my disease. No more would I play the victim. Uh uh. Not me. I was attacking this head on, and life better watch out.

I switched majors to something I actually enjoyed. The new course of treatment made me feel halfway human again, and I started attending classes. I stopped the issue of attendance before it began by talking with professors the first day of class, making them aware of my condition, and to back it up I made sure I was put on the school disability list. My proactive attitude didn’t happen all at once, more like baby steps, but it still happened.

I wonder, if it weren’t for Crohn’s, who would I be? Yes, some of my trainwreck-ism came from being sick, young, and immature, but what would have caused me to pull my head out of my rear end and get it together? What would have made me the driven, ever curious, adventurous soul I am now? How would I be able to appreciate each pain free, joyous moment on this planet?

I wanted to teach in bilingual education. I didn’t think, at the time, my French was good enough. Or that I was good enough to even get hired by this forward thinking school district. But I worked on my French, put a smile on my face, walked into all five interviews (yes five! I didn’t get hired after the first four, but I was determined, and three years later I DID get hired), and finally got my dream job. I get to speak French all day long with six year olds. Yes, that is awesome to me! I wanted it, and I got it, and I’m loving it.

When I want something, I go for it. I may not always get it, but at least I’ve tried. Because my good days are limited, and who knows what life I have left to live, I want to enjoy it all as fully as I can. Whatever interests me, I will try. Hydroponics? Doing it! Computer languages? Trying to learn. Longboarding? As long as I don’t get speed wobble and take a tumble like I did the first time, all is well. Short hair? Rocked it. Red hair? Can’t see myself in any other color now. Teenage stepkids? Yup, just don’t confuse me for a teenager, too.

And that brings me full circle to my most crucial point here. If it weren’t for Crohn’s, I would have never, EVER dreamed of being a stepmom. Nor would I have ever been successful at it. Crohn’s taught me responsibility, wisdom, and to appreciate life in a way nothing else could have. And because of it, I am honored to be involved with these four kids. Yes, I get mistaken for their sister. Sometimes people think I am Matt’s girlfriend. Ew, weird. Trust me, I suffer from these misunderstandings almost daily. I recently got carded trying to buy a rated R movie at Walmart, and my kids were with me. The lady thought I was 17. I’M ALMOST 29!!! Compliments aside, I’m proud to be their stepmom, and that they’ve let me into their lives so willingly.

So thank you, Crohn’s, for choosing me and not someone else in my family. Thank you, genetics, immune system, bacteria, and whatever else went into play for striking me with this illness, because without it I would never have four amazing stepkids. And that’s the biggest gift life could offer me.

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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The IBD Island & Discovering #GYBO

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“Funny how a disease plants you on an island, the world jumbling around you, but never reaching your fingertips. Solitary confinement at its worst. Smell, but don’t taste. Exist, but don’t belong. Now I’ve discovered another soul on this island, and I refuse to let go.” (Excerpt from Chronically in Love by K. Zahm)

Crohn’s Disease doesn’t just mess with your body; it messes with your mind. Am I really THAT sick? Am I being paranoid? Why do I spend hours locked in my room and away from people? Is there something wrong with me? And the list goes on and on and on….

From ages 18-27, I struggled with these mind games, still trying to gain the maturity to handle this disease. Let’s face it, most people diagnosed with IBD are young people trying to grow up, but now we have to grow up while struggling with pain, medications, doctors, school, new jobs, relationships, etc. And so far, I’ve been doing it alone. Along the way I’ve met my husband, kids, and some unforgettable friends, but I’ve always lacked an IBD community. (This is not to downplay my network of non IBDers, because you guys ROCK!)

When I found #GetYourBellyOut, I was in remission. Yes, I was struggling with a scar tissue stricture, but was in remission nonetheless. I discovered a group of people from all over the world, experiencing my struggles. I’ve watched some suffering in hospital, others dancing about in their living rooms despite pain, others snapping some beautiful selfies. This group is a place where we can laugh, cry, seek advice, bitch, moan, cheerlead without judgement. We’re all accepted for who we are, and that’s an amazing thing.

Yesterday, for the first time, I needed #GYBO (and of course my AMAZING friends and family) more than ever.

This last month, my symptoms have shifted, and I had that “oh crap” feeling. What if it’s back? No, surely not. I let my doctor know about the burning, bloating pain by email, and he said if it got worse before my next dilation to let him know.

Dressed in a swanky hospital gown and no-slip socks, I sat on the edge of my bed, describing these symptoms to him before my dilation. The look he gave was quizzical.

“Wait, since when have you had these symptoms?”

Did he not remember my emails? I know he’s busy and all…

This turned into a full on cross examination of questions, detailing the last eight months of my life. I felt interrogated, caught off guard, and my brain just wasn’t grasping what his deal was. Did he not believe me? Did he think I was crazy? Do you see these mind games I’m referring to?

“You shouldn’t be having these symptoms with a scar tissue stricture.”

My mouth popped open and shut. Say what? I mean, I get that. But what does he mean by this? I stammer out something…don’t remember what.

“I know it seems like we’ve been speaking in tongues about this, but I have an idea of what’s going on. I know what to look for.”

His face is cold. His words are cold. Let’s just say bedside manner isn’t his thing. Is he methodical? Absolutely. For the first time in the history of this illness, I ran to the bathroom and had a break down. If you know me, you know I don’t do this. I’m a get-it-together-fight-this-head-on kinda gal. When I collected myself, I got on the group page and posted the incident. I knew I wouldn’t hear back before going into the procedure, but the simple act of getting to share with people who understand was a mental relief in itself.

I woke up to my doctor’s face in the corner of the room.

“Well, seems like every time we go in, we find something interesting. I was able to see through your anastomoses this time, and your Crohn’s is back on the other side of it.”

Maybe it was the drugs; maybe it’s the fact Crohn’s nearly killed me in 2011; maybe it’s because after ten years I’ve hardly had a decent stretch of relief, but the tears wouldn’t stop. Again, I posted to the group, my own facebook page, and started texting a friend who is dealing with major health issues of her own. With doctors and nurses swirling around me, I stuck my face in my phone, my brain fighting to get a grip.

My friend talked me down-big time. As soon as people on the group saw my post, I received an amazing outpouring of support. And of course, on my own page, people were there for me. I know it may seem trite- getting virtual hugs, etc. on social media, but it’s not. Knowing I have people to talk to that share my experiences is a relief, because they reassure me I’m not crazy. It is that bad. I can’t tell you how many times I’ve commented to a fellow IBDer to head to the ER STAT, or get a new doctor, or ask about cross medication, or how to deal with relationships, kids, etc.

I don’t wish to downplay the people in my life who are there for me, because you know who you are, and THANK YOU. I wish to convey that it’s been life changing to have a group of people to talk to who suffer from the same illness. The #GetYourBellyOut community is a diverse one- diverse in age, country, and cultural background, yet we all get along, and we are all there for each other. Whether it’s joking around, posting cheeky pics, or offering advice, the group is a safe haven for those with IBD. I may be stuck on the proverbial “IBD island,” but at least I’m no longer alone.

Thank you Sahara, Lorna, Gem, and Victoria for starting #GetYourBellyOut!

If you like this post, donate to ccfa.uk or ccfa.org to help us find a cure for Crohn’s and Ulcerative Colitis:) And as always, #GetYourBellyOut!