Dear CDC…

Dear CDC,

My name is Jessica Grossman.

In my 25 years of life, I’ve tried to live as healthy as possible.

I watch my diet.

I exercise

I take vitamins.

I don’t really drink.

And I certainly do not smoke. 

But I have an ostomy.

For reasons completely out of my control due to Crohn’s Disease, at the age of 13 years-old, I was told that my disease was going to kill me unless I had life-saving ostomy surgery. 12 years later, I’m alive.

Uncover-Ostomy-12-Year

I get it.

You want people to quit smoking.

I do too.

Smoking is gross.

It’s bad for you.

My grandmother died from smoking.

But you’re doing it wrong. So. Very. Wrong.

And I’m here to call you out.

I’m here to enlighten you on something you really should already know. You are a major health organization, after all..

Centre for Disease Control, this video that you put out, featuring a woman named Julia, is what you think is the perfect way to scare people out of smoking.

I’m not entirely sure, but I assume that you, Julia are a real person with this real story. But, Julia, if this your real story, I am saddened for you.

You had colon cancer due to smoking and you needed an ostomy.

But what you said in this video, Julia, to be honest, shocked me. You said:

“I had chemo and 2 surgeries, but what I hated the most was the colostomy bag.”

I’ve never experienced chemo myself, though I have witnessed many others go through it (including my father) and it looked horrendous. Losing hair, weight, being weak, nauseous, anemia, infections, … were all not as bad, you say, as being alive with an ostomy bag.

No, I’ve never had chemo.

But I have had those side effects as symptoms of my Crohn’s.

Losing hair and weight? Check.

Nausea and anemia? Check.

Infections? Check.

I am not comparing what I went through to having chemotherapy, but I still find it hard to believe that an ostomy bag is worse.

And you, the CDC, you chose to highlight this. You chose to highlight that no matter how horrendous chemo is, an ostomy bag is worse. 

The campaign continues, with another, longer video from you, Julia. Here you give a bit more detail into what life is like with a bag.

It turns out, you only had a bag for a year. It’s sounds like that was a sad year for you. I’m sorry it was.

“I didn’t want to be around anyone.” You say. You say this because you were worried the bag would come loose and it would smell. You had gas and cramping and you say you were essentially “stuck at home.”

Julia, the only time I’ve ever been stuck at home was during the time I was sick with my disease. My bag rarely ever comes loose, and thanks to my healthy diet, it doesn’t even smell. Gas and cramping? My boyfriend has more of that than I do. He smells worse, too.

Julia, maybe you didn’t know we were out there – others with ostomies who could help you. Others who live meaningful and enjoyable lives. Lives that, without an ostomy bag, would not exist.

I can’t blame you, though, Julia.

It’s hard to find us. It’s hard to find the positive light hidden within our ostomy bags. You know why, Julia?

Because of organizations like the CDC.

Yes, CDC, because of you.

As your mandate states:

“CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.
CDC increases the health security of our nation. As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.”

Saves lives.

Yeah, there’s a part in there that says you work to save lives.

CDC, do you realize that what you’re doing is completely contradictory to your mission?

Yes, you’re working to stop deaths related to smoking. But in return, you may actually be increasing deaths that could be avoided with ostomy surgery.

1 in 200 people in the US have some form of IBD. If it gets out of control, IBD can lead to the need for ostomy surgery. Without ostomy surgery, IBD can lead to death.

And this 1 in 200 number is just those with IBD.

Not those with colon cancer.

Not those with diverticulitis.

Not those who had traumatic accidents that need the surgery to make it through the night.

Ostomy surgery is a weird surgery. While in some cases it’s an emergency procedure like during an accident, in most cases, it’s elective.

Mine was elective.

I was literally given the option to choose between ostomy surgery or death.

And many other people are given this choice, too.

But they aren’t getting a chance to make a rational decision.

They are clouded with misconceptions and misguided notions.

Because of campaigns like this, the negativity surrounding ostomy surgery continues on.

Because of campaigns like this, many people are choosing to struggle through their disease instead of having ostomy surgery.

Because of campaigns like this, many people may choose to die.

Because of you CDC.

In the meantime, I’ll continue what I’m doing over here.

I’ll continue to spread positive ostomy awareness wherever I go. I’ll continue to visit patients faced with the decision to have ostomy surgery and help them make that rational decision. I will continue blogging about how lucky I am to be alive because of surgery. And I’ll continue to call out organizations like you.

In the meantime, CDC…

FU CDC

Love,

Jess.

—————————————————–

I’m supporting the UOAC in their efforts to get the CDC to remove the campaign. I have signed their change.org petition, and you should too.

It’s a Love-Hate Relationship

The sun shines through your window as a new day breaks. You open your eyes and you roll over. It’s your first thought as the day begins.

Thinking about being together again.

Then, as the day goes by, you start to question it. You gave in. You wonder why you did because you know you shouldn’t have. Your whole body regrets it.

The love-hate relationship.

I’m currently in a love-hate relationship. A relationship that, when it’s good, it’s really good. Every moment we spend together fills me with joy and happiness. But when it’s bad, it’s really bad and it hurts everywhere.

My love hate-relationship has been going on for years.

What relationship is this, you ask?

My relationship with food.

Relationship with food

I’ve been in a love-hate relationship with food for a very long time. We’re one of those couples who met a really long time ago and started out as friends. We’ve had many ups and downs – lots of fights where we just can’t agree with each other. Some great times too, when the comfort overwhelms me. We have such a history that we keep finding our way back together, no matter how difficult things get. No matter whom, or what gets in our way, we always find our way back to each other.

But right now, we’re broken up.

For some reason, myself and food have just not been getting along. As I wrote recently, we broke up for a bit – for over a month, until my doctor helped us work things out. I gave food a chance, and it seemed like we were getting along fine for a little while after.

A few weeks ago, however, food stabbed me in the back again – and at the worst possible time.

I woke up early one Saturday to get to the set for a new show I’m filming and felt very strange. Not having a choice, I headed to the filming location. Within 10 minutes of being there, we got into a huge fight and I began throwing up. I couldn’t stop for basically the entire day, while filming all of my most important scenes.

The director would say “ACTION,” I’d do the scene, the director would say “CUT,” and I would run to the bathroom to vomit. Then I would come back and start over again.

Uncover Ostomy - Love Hate Relationship - Food

Food is one of those illicit lovers who can make you feel amazing one instant, then horrible the next.

The feeling of eating something decadent and sweet, or sour and crunchy – those are some of my favourite feelings. Like any good lover, food can make you feel like you are the most important person in the world.

Uncover Ostomy love hate relationship food

But like any bad boyfriend, food can also take that all away. Not only can food ignite pain in my body from the inside out, but it has the ability to eat at my mind and make me feel like I’m worthless.

Having Crohn’s disease and an ostomy has required food and I to do things in our relationship that many others will never have to do. I’ve had to cut out stringy foods and foods with seeds to dairy to meat to essentially cutting out all food in general. I’ve been on almost every diet known to man to even not being allowed or able to eat anything at all. Because of this rocky road we’ve been down and continue to follow, it’s had both physical and psychological effects on me.

Effects that still haunt me today.

For those amazing faithful readers of mine who have been following me for years, you may remember the days when I used to complain about the love-hate relationship I had with one of my exes. I would blog over and over again about how we had gotten together after being friends for years, had broken up, then gotten back together, then broken up again, and then miraculously found our way back to each other before breaking up one last time.

It was exhausting.

But here I am, about 7 years later, and I find myself chatting with him on Facebook chat, seeing him at parties, and going out for with him for lunch (well – only tea for me) last week.

With my ex.

Why? Because we’re friends again. Really good friends, actually. Just like we used to be before we dated.

Which is crazy to think because if you remember how messed up our relationship used to be, you would have never thought that we’d ever want to look at each other again, let alone spend time together. But here we are – civil and getting along well.

This got me thinking that maybe there is a chance for me and food. Sure, things are rough right now and I’m unsure of where we might end up, but there may be a settling point where we can both get along, just in a different way. This is what I’m currently working towards. I’m taking that break from food, but trying a little bit of something here and a little bit of something there. Letting food in just enough to keep me going but not too much to bring me back down.

While there are still a ton of physical and psychological side-effects that food has given me, I think that if I work hard on mending our relationship in whatever form that may be, those will hopefully disappear.

Where our relationship will go in the next few weeks, months or years is unknown – but at least I know anything is possible.

Excuse me while we go work it out.

uncover ostomy love hate relationship food

I am Fine.

“Fine.”

By definition, the word means “in a satisfactory manner,” or, you know, that everything is OK.

We say it often. When someone, for instance, asks how we are.

“Oh, I’m fine.”

But what does the word “fine” really mean?

Many of you reading this might already be thinking – wait, fine does not always mean everything’s OK. In fact, does it ever really mean things are satisfactory?

As the sitcom formula goes, a guy does something, unbeknownst to him, that upsets the girl. He carries on with his day, until he realizes the girl is less than happy with his presence.

“Honey, something seems different. Are you ok?”

“Yes, I’m fine.”

“Oh, ok, great. Want to get some dinner?”

“NO. GO AWAY.”

End scene.

never do this.

Really.

I promise.

pinky swear

Trust me, I am not one of those women who just keeps things to herself and says she’s fine when she really just wants to punch her guy in the face. For real, my boyfriend can attest to that. If something’s wrong, I’ll say it. (Ok, as I’m writing this, he’s saying I’m lying. I DO NOT AGREE.)

Anyway.

There are a lot of women, and men too, who do this. Pretend like nothing’s wrong, while they’re really seething on the inside.

If no one has said this to you, before, I’m saying it now – playing the “fine” card, does not accomplish anything. All it really does is it makes things confusing and unnecessarily convoluted.

Just like my body has been doing.

Yes, my body is currently playing the “fine” card.

As I wrote a little while ago, I was having strange pain in my stomach. It was so bad that it stopped me from being able to eat, being able to exercise, and stopped me from being able to go out with friends. It was also such a weird pain that I couldn’t really tell what it was – and neither could my doctor. It was terrifying.

My body was attacking me from the inside and we had no idea why.

In an effort to reduce the pain and hopefully solve the problem, I went on a clear fluid/soft food diet for over a month and a half. I also had a number of uncomfortable and intrusive tests done to determine what the issue might be. After all was said and done, there was still no solution.

My doctor told me that because he couldn’t figure out what was wrong I should just try eating again and see what would happen.

I really missed food, so I thought I might as well try. The following 2 days the pain persisted. I still had no idea why.

Then, miraculously, on day 3, I ate a meal and did not feel a thing.

An hour later.

2 hours later.

10 hours later.

My body was completely fine. 

What the actual hell?!

My body had decided it was fine. 

Do I know why it was mad in the first place? No. Do I know what happened to make it better? No. Do I know when it will get mad again? No.

I have no idea what is going on inside of me. Not a single clue. And yet, somehow, on some random day, it decided that everything was A-OKAY and I could go along my merry way.

It would normally be at this point of the sitcom where the girl finally explodes and tells the guy everything that has been wrong for the past month, they talk, and eventually sort it out.

However, for me, I have no idea what was wrong, or if it will be wrong again in the near future.

While my mom and my boyfriend keep telling me that I should just be happy the pain is gone, there is a little voice in my head that keeps reminding me that it could come back at any time. You know, that same voice inside your head that reminds you to be careful what you say because you might piss off your girlfriend.

Guys, let me tell you, if that’s what you think when you’re around your girlfriend, the relationship is not going to last.

But I can’t break up with my body.

I’m stuck in a relationship with it.

For whatever reason it decides to be mad, whenever it decides to be mad, I have no control and no solution. I just have to ride it out until it decides that it’s over it.

So, for now, I am fine.

sigh

12 Reasons Why You Should Love Your Ostomy

HAPPY BAG-AVERSARY TO ME!

12 years ago, today, I had my ostomy surgery.

It’s not hard to believe that it’s been so long because, 12 years later, I can’t really remember what it was like to not have my ostomy. I’ve had my bag for so long that is has literally become an additional part of my body, as if I was born with it.

And 12 years later,

And I couldn’t be happier.

In celebration of today, I thought I’d write a little blog simply about why I love my ostomy, and 12 reasons why you could (and should) love your ostomy, too:

 

12. Because you can go on a roadtrip and not have to stop for hours

Uncover Ostomy Roadtrip

I don’t know about you, but if I plan properly (meaning I don’t eat a giant 3 course meal), I can go for hours without needing to pull over at a rest stop during a long roadtrip. As long as I’m wearing the right pair of pants, I’m always the last man standing.

11. Because it’s an excuse, for everything

I don’t always use my ostomy as an excuse to get into/get out of something, but sometimes, the situation just calls for it!

“Ma’am, you can’t bring those snacks in here”

*flashes ostomy* “I need them because of this!”

“I – uh- ok..”

Uncover Ostomy confused face

*walks in without looking back*

10. Because you can eat things you couldn’t eat when you were sick with Crohn’s/Colitis

While I still have restrictions because of my ostomy (and because I’m still lactose intolerant, etc.) I am able to eat things the doctors always told me to avoid, pre-surgery. Aka a salad, an apple, or even popcorn at the movies!

Uncover Ostomy popcorn at the m

9. Because you can usually always remember what you ate the night before

“Oh yeah, I had popcorn at the movies. And blue Gatorade…”

Uncover ostomy jon stewart popcorn

If you don’t get the joke, drink some blue Gatorade and get back to me.

8. Because it allows you to exercise, play sports, and get back outside!

When I was sick, I could barely move, let alone work out or play sports. I was weak, tired, and in pain. With my ostomy, I am now healthy enough to get outside, get fit, and get my sexy back.

Uncover ostomy workout

7. Because you can drink without getting a hangover

Ok, so this may not apply to all (and don’t get mad at me if it doesn’t work for you…) but if I time myself properly, I can drink, get buzzed, and get sober all within the same night! It just goes right through me. I wake up feeling perfectly fine the next morning, while my friends… not so much.

My-Talent-Lies-In-Drinking-Gif

Amen, sista.

6. Because you’ve always got a story to tell

This one time, I was walking through airport security…

Uncover Ostomy airport security

5. Because you have a plethora of jokes attached to your stomach

Whenever I walk through airport security…

Uncover Ostomy airport security

4. Because you can have a Crohns or Colitis flare, stomach flu, or food poisoning, and you only have to get up half the time!

Sorry, this one is a little gross… yet accurate and convenient.

Instead of running to the bathroom every few minutes like I used to when I was sick with Crohn’s or whenever I’ve had food poisoning, I can now sit back and relax while my ostomy handles it for me, for a little while.

Uncover ostomy sit back

3. Because it helps you get rid of assholes

PUN INTENDED.

But actually.

When you open up about your ostomy, you are opening yourself up to another person or a group of people.

If that other person, or those people, can’t accept you for how strong you are for making it through surgery, for how brave you are for opening up to them about the surgery, and how awesome you are for living your life in a completely different way, then they suck and you need to get rid of them.

Without the ostomy, you may not have seen their asshole side until it was too late.

Uncover Ostomy bridemaids swag

SEE YA LATER, ASSHOLE.

2. Because it helps you find amazing people

While opening up about an ostomy can shed light on the people you want to get rid of, it can also show you just how special the other people in your life really are.

The people who can look deep into your soul and appreciate you for who you are, what you’ve gone through, and what you’re continuing to go through with your ostomy are the people we are meant to keep.

Uncover ostomy love

1. Because it makes you who you are – and you should be damn proud

12 years later, I couldn’t imagine who I would be today, without my ostomy.

It’s not because I believe that I am me because of my ostomy, but I believe that I am me because of what my ostomy has done for me.

It has taught me to accept myself for who I am, no matter what I’m made of (or missing!)

It has taught me to adapt to situations around me, whether it meant learning to eat differently, dress differently, how to swim, shower, or get intimate with an ostomy, or even how to adapt to opening up about what makes me different.

It has taught me to be brave, by preparing for, having, and making it out of surgery to tell the tale to those around me and around the world.

It has also given me another chance at life, which would have been taken away from me from my illness. Without my ostomy, I would be dead.

So, with that, I’m busting out the candles.

Uncover-Ostomy-12-Year
Just because I can’t eat the cake, doesn’t mean I can’t celebrate!

I Don’t Remember How to be Sick

I finally decided to go to the doctor.

After my mom called me out for my blog post last week, after my boyfriend bugged me enough, and after being on clear fluids and having pain for 3 weeks, it was time.

Yesterday afternoon, I emailed my GI doc’s receptionist at Mt. Sinai hospital in Toronto, detailing my symptoms – some of which I have never had before. Early this morning, she called and told me that the doc could fit me in. This doctor barely has time for anyone and he was fitting me in.

This must not be good.

I made it to my appointment today, sat down and went over my symptoms with my doctor. He hummed and hawed, asked me some questions, and poked at my stomach – the usual. The unusual part, however, was that he had no idea what was wrong with me.

In fact, he wasn’t even sure if my symptoms were related to my Crohn’s Disease or my ostomy. Maybe the gallbladder? Maybe the pancreas? Maybe a stricture or maybe just some scar tissue. Who knows! The only way to find out, he said, was to schedule me for some tests and test out a med.

I was sent across the hall to get my blood drawn, downstairs to fill a prescription, then back up to the 5th floor to try on some hospital gowns for my xray photoshoot.

After an hour and a half of running around the hospital, I left, and started to walk home.

It was cold out, but sunny, so I put on both my jacket hood and my big sunglasses.

And I walked.

I kept walking.

Mind blank.

Walked some more.

My mind still blank.

I walked by a pharmacy.

Without even knowing it, I walked through the door.

I didn’t need anything.

I was drawn to the candy section. The only area that had food I could eat.

I circled 2 aisles.

I still didn’t need anything.

Mind still blank

I stopped on my second time around and stared at some candy. I lifted it off the shelf and read the ingredients.

I didn’t need it.

I turned and started to walk around the rest of the store.

And then my eyes started to well.

Still in my sunglasses, so the lady across from me in the store at the cash register couldn’t see, tears made my vision blurry, and a lump in my throat formed.

I didn’t want to eat anymore stupid candy.

I wanted a real meal. Something so simple. Something I haven’t had in 3 weeks.

Lump getting bigger, I walked out of the store, and continued walking home.

My mind, no longer blank, now racing, fuelled my walk home – how could the doctor not know what was wrong with me? How could I not know what was wrong with me? What if I need to be on medication again? What if I have to go back to the hospital? What if I need surgery? What am I supposed to do? Am I strong enough to handle whatever is coming my way? Will I have to stop working? What about my boyfriend? Would I still have the energy to continue working on all the extra things I’m working on? Could I spend weeks in a bed again? Could I handle people poking and prodding me? What about the pain that comes with tests? What if the pain gets worse?

And so on, and so on..

And then, my mind stopped on one last thought -

I don’t even remember how to be sick.

The last time I was really, really sick, I was 13 years old.

Whether it was because I was too young to understand how sick I was, or if I just didn’t have anything to lose, the thought of being sick was never that frightening.

I remember that I could just accept the fact that I was living in the hospital. I remember being ok with missing out on holidays and vacations. I remember accepting that I was doing school work from a bed and skipping after school activities with my classmates. I remember just laying back while doctors and nurses poked, pinched, sliced and diced me. I remember being able to handle the pain. I remember it all just being ok.

Or maybe it was all the drugs. Most of what I remember experiencing is clouded in a haze of drugs.

But what I do remember in that haze is that I just knew how to be sick.

What about now? I’m 25 years old and very aware of what could happen and what might happen and how much of an impact it would make on the wonderful life I’ve built.

I don’t remember how I did it.

Maybe it’s the fear of not knowing. Maybe it’s because this is the second time in 2 years. Maybe it’s because I have so much more to lose.

Whatever it may be, at this point, I can’t really fathom what’s coming and what I’m going to do about it.

The only thing I can do is make light of the situation and hope for the best.

 

Can someone say sexy hospital wear? Sigh. #crohns #colitis #ostomy #ibd #hospital

A photo posted by Jess Grossman (@jessgrossman) on

But You Don’t Look Disabled

A few months ago, I wrote about how I had applied for the Canadian Disability Tax Credit here in Canada, which, when approved, comes with some tax benefits. If you remember, I had quite a time trying to get approved, but, eventually, after going through the process of re-applying, rewriting applications, bugging my GI doc to fill out some extra forms, I was finally granted disability status in Canada.

Yes. In Canada, I am considered disabled.

And yes, I know I don’t look it.

 

fabulous

According to the Canadian Government’s definition of disabled, I do, in fact, fall under that category. My ostomy makes being alive very different and more complex than non-disabled people. Though I’ve had it for almost 12 years and it is part of who I am, it still has its ways of being a pain. The extra time, cost, and complexity of my ostomy qualifies me as being disabled.

And it doesn’t matter that I don’t look it.

One of the benefits of having the tax credit is that I am able to open up a special savings account. As everything is when it comes to government, it’s a process to get it set up and comes with many stipulations and rules. Before I set up this savings account, I wanted to do my research, so, I went from bank to bank, talking to their employees, asking the questions I needed answered.

And from bank to bank, I would get the exact same thing:

“Hi, I’d like to talk to someone about opening an RDSP here at your bank.” I would ask.

“Ok, I can find someone for you to speak with. Who did you say this is for, again?” They would say.

“It’s for me.”

“A Registered Disability Savings Plan is for you.”

“Yes.”

“You know you have to be approved for it, right?”

“Yes.”

“Have you been approved?”

“Yes.”

confused

“…”

“Ok… let me just get someone for you…”

And off they’d go, walking a few steps, then looking back to get a good look at me in my skinny jeans and high heals, and wondering if I was just some idiot.

Eventually, I found the bank I wanted to open the account with (not from the help I was getting, but from the investments…) and I went to set it up.

I went to the teller, and said the same thing I did time and time again – I wanted to open an RDSP. After witnessing another round of confusion and hesitation, I was eventually taken to an employee who could set it up. It was only after a quick introduction that it went straight into the usual:

“This RDSP is for.. you?” he asked.

“Yes.” I responded.

“Disability Saving Plans, right?”

“Yes.”

“With a D.”

“Yes. I’ve been approved for it. I know how much money I can put in. I know the rules about taking money out. I just need someone to set it up for me.”

“You seem like you know a lot more about this than I do.”

“Well, I’m not mentality disabled!”

eye roll

Eventually, I started giggling out of frustration and exhaustion and just wanting to have the whole thing finally done with. The banker, recognizing that I was laughing at my own inappropriate joke, relaxed into the conversation and we were finally able to get it done.

Finally.

Not a single part of me was surprised by the confusion and questioning I experienced during this process. In fact, I expected it.

But why did I expect it? Why was it ok for me to accept that others couldn’t accept that I’m considered disabled? Why was it ok for the employees to question me in this way? Even further, why was it ok for them to speak to me like I have the IQ of a 5 year-old?

Well, you all already know that I’m not someone who cares about what anyone thinks of me. But what if I did? What if I was someone who could be offended by something like this? Would you have been?

For those of us with Crohn’s, Colitis, ostomies, and other chronic illnesses, we’ve heard it before:

“Well, you don’t look sick.”

No, on the outside, we don’t look sick. In fact, on the outside we look like strong, beautiful people.

Because we are.

But on the inside?

Some of us are in pain, some of us can’t sleep, can’t eat, can’t move, can’t muster up the courage to hang out with friends.

On the inside, we’re not ok.

This is a picture of me that was taken last weekend:

Uncover Ostomy - Photography by Angela McConnell - But You Don't Look Disabled

Guess what?

I was having stomach pain when this picture was taken.

I have been on clear fluids and soft foods all week.

While I know my mother is going to read this and call me and yell at me for not telling her sooner - she saw me this past Friday and couldn’t tell.

Most of the time, you can’t tell.

And none of you would be able to tell if I hadn’t opened up about it.

This is why it is so important that all of us speak out.

It’s important that we teach. It’s important that we help the public understand that there is a lot more than what’s on the surface when it comes to our health. This is why I am always talking about what I have, to remind people that you can’t judge a book by it’s cover.

And you can too.

Whether you take time to explain it to a few family members, or a group of friends, or you open up about what you have to an entire auditorium of people -

We all have a reason to talk about what we have.

Without us speaking out, we will continue to be judged by our appearance and not understood by what we’re going through. We will continue to be scrutinized for having to leave school early, for missing a day of work, for not being able to wear a certain pair of pants, or for not being able to share a certain dish at a restaurant. Without educating those around us about what we’re going through, they’ll never learn.

Because they can’t see it for themselves.

Friends and followers - I have some exciting things coming in the next little while for Uncover Ostomy that I want all of you to be a part of. While I can’t divulge many of the details yet, there is a way you can be involved.

Over the next few weeks, you can educate. Over the next few weeks, I want to see you share.

I want to know why you talk about your #ostomy.

Tweet to @UncoverOstomy, post on our Facebook page, and use #ostomy on an Instagram post.

Tell me why you open up. Whether it is to just a few people or hundreds of people over, I want to see your reason. I want to know why you have joined our cause.

Soon, you’ll get see why….

No, we may not look disabled on the outside, but that’s only because the strength that comes from dealing with our diseases is what shines through most.

New Year’s Time Machine

What if we all just stopped thinking about New Year’s as the start of a new year, but started thinking about New Years as the rewind button for the last.

wat_meme

Ok, hear me out..

Barring major life events like graduating university, getting married, having kids, etc., we live our lives in pretty much the same way, year after year. We go to work, we hang out with friends and family, and we spend some time doing the things we enjoy doing like crafting or playing video games.

Same thing, year after year.

For me, at least, 2014 was a good year, but I’ll be honest, not very exciting. Yeah, I got a new job, and went on a few trips, but I think I’m at the time in my life when most of my days are filled with generally the same old.

So that’s how I foresee 2015 being – the same old.

But I don’t want it to be the same old.

I want it to be different.

That’s why, for this New Years, I’m not ringing in the start of another number on the calendar, but I’m jumping into my time machine and experiencing it all over again. Except, this time, differently.

I want more.

I want to do more.

I want to experience more.

I want to build, create, grow, more.

That’s what I want for 2015.

Why do I want to do the last year over again, you might ask? Why not just say, screw it with 2014, and these are my New Years resolutions, going forward?

Because New Years resolutions are bullshit.

Funny-new-years-resolutions-someecards

We make all these promises to ourselves that we’ll eat healthier, study a new language, call our mothers more, and pay our bills on time, but within a month we’ve eaten 11 pizzas (at least one of them being after 2am), already forgotten how to say “hello” in this new language (but remembered how to say “butt”), screened our mothers’ calls 6 times, and found the VISA bill in a pile of newspaper 3 days after payment was due.

gym-newcomers-on-1st-january

At least some people do well in the new year…

every-gym-owner-on-january-1st-meme

Resolutions are bullshit.

That’s why I’m not looking ahead to 2015.

No, I’m looking back at 2014 and identifying the things that I need to change.

I’m going to use 2014 as my template, if you will. A template that I will use to adjust for the year ahead. I’m going to look at what I’ve accomplished, and learn from my success. I’m going to look at what I didn’t accomplish, and learn from my failure. I’m going to look through my day-to-day activity and see where I could have put more time towards something else, put less time, slept more… I’m going to use 2014 as my template to properly build the year I want to experience in 2015.

They say history repeats itself if the conditions before remain the conditions ahead, right?

So let’s change them.

New Years Resolutions?

Pft.

grumpy_cat_new_years_resolution

What do you want to change with your New Year’s time machine?

 

Sunshine, Relaxation, Freedom.

Sunshine. Warmth. Relaxation. Not having to talk to anyone for an entire week. Vacation.

A little over a week ago, my boyfriend and I disappeared to an all-inclusive resort in sunny Mexico. While the trip itself ended up being absolutely wonderful, it was not without its stresses.

Despite being a seasoned traveler, there’s something about traveling and staying at a resort during the holidays that… isn’t the same as normal traveling.

The morning of, you wake up at the crack of dawn and rush to the airport only to find yourself waiting in line after slow-moving line full of people who barely ever travel, if not for this being their first time on a plane. Lines full of people who have no idea how to check in to the flight, no clue where to drop their bag off, and have no understanding that they are not allowed to bring a full bottle of water through security…

Out of the way line

You make your way past check-in and on to security and you find yourself face to face with a TSA agent who has just about had enough of this time of year (with 3 more weeks to go) and decides to take it out on you by getting all up in your personal space. Sometimes, they even ask you about what they saw on the full body scanner, and you have to whip out your ostomy bag so they’ll leave you alone. (Yes, I’ve had to do that before.)

Then, after all that, you realize you have 2 hours to spare before even getting on the plane.

Sigh.

It takes a lot of effort to relax.

Of course, the biggest stress is always figuring out what to pack. You’re not exactly sure what the weather will be in this foreign land for that specific week (sunny, raining, windy, cold or warm at night?) and you can then only hope that the massive amount of crap you have shoved into your suitcase will somehow result in outfits that can work.

Time to packWhat to pack?

 

 

 

 

 

 

What to pack What to pack?

 

 

 

 

 

Well, this trip, my suitcase was stuffed full of bathing suits.

There aren’t a lot of opportunities for me to wear bathing suits over here in cold, snowy, Canada, so any chance I get, I want to wear them. I actually find wearing bathing suits kind of a fun challenge.

Cause, you know, it’s not easy wearing a bathing suit with an ostomy.

Figuring out the size, shape, stretch, and pattern of the suit, as well as how to fold, stuff, and choose what ostomy appliance to wear are all elements that come into play when trying to pull together a suit that is suitable (ha) for the pool, the beach, and the eyes of the people around you.

So, for this trip, I brought and wore 5 different bathing suits across 5 different days. Each day, showcasing a different way to wear, and tuck away, the bag.

Some of you may have already seen that I posted these pictures on Instagram, and many of you were shocked as to how I was able to pull off looks like this. I’ll be honest, it wasn’t as easy as it might look. Thanks to my almost 12 years of ostomy experience, I’ve managed to pull together some tips and tricks that make dressing for the sun possible. You’ll also notice that each bathing suit is a completely different style. No matter what your body shape, size, or where your ostomy is placed, I bet at least one of these styles will work for you (bag or not!)

Before I begin, instead of wondering what I’m hiding underneath my suits, I’ll let you in on the secret – I’m wearing the Coloplast Assura base plate and the small closed bag that you can see here, on the left:

Click for free samples!

Click for free Coloplast samples!

 

Now, how did I do it?

Day 1 – High Waisted Bathing Suit

Well, ok, this one doesn’t need much explanation. I literally just bought a pair of high-waisted bathing suit bottoms and paired it with a cute bathing suit top. The bottoms are so high, that it hid all of my ostomy, and then some!

Day 2 – Bikini Skirt

If you happen to be like me, and have a very low ostomy, a lower bathing suit bottom can be possible. The best part about this suit is that it also comes with a skirt. That means, it covers the bag if it happens to peak out the bottom. I just tuck the top of the bag into the top of the suit, and voila!

Day 3 – Cut-out Suit

This was one of the ones I actually picked out when I was researching for my summer bathing suit blog. I actually liked this one so much that.. I bought it. The cut-outs for this particular suit fit my ostomy just perfectly – I only had to tuck in the bottom to hide it from peaking out. For others, however, the cut-outs may not be in the right spot. Don’t worry, there are a ton of different cut-out style suits out there that could work.

Day 4 – Regular Bikini Bottoms

Ok, not going to lie… this one even shocked me.

In this picture I am actually wearing regular bikini bottoms.

Again, I’m lucky that my ostomy is very low, so that was one bonus in my favour. The other bonus, however, was that the Coloplast products I use are small and flexible enough that I was actually able to fold them together, behind the bathing suit, and lay them flat against my body. With a fold on the bottom, a fold on the side, and then a fold on the top, it managed to keep it tucked away perfectly!  It takes a bit of skill, but with the right product, and the right fold, it can work. I did, however, have to make a few extra trips to the bathroom, but totally worth it to get a better tan! (PS – If you look closely, you can see the plastic of the plate!)

I also paired it with a bathing suit wrap (meant to be worn in the water) so I could still hide it if I wanted to. I did wear the wrap when I went into the ocean, cause, you know, things move around in water.

Day 5 – Regular Bikini Bottoms with an added Piece 

So, fully recognizing that not everyone can pull of regular bikini bottoms like I miraculously was able to do (for the first, and maybe even the last time), I also wanted to sport my additional ostomy bathing suit piece. There are a number of companies out there that actually produce special bathing suit bands that can be worn with bathing suit bottoms to keep the bag tucked in and in place. In this picture, I’m wearing a simple black band tucked under the same bikini bottoms from the day before.

By Day 6 and 7, I ran out of new suits to wear but it really didn’t matter. Recognizing that I didn’t know anyone around me, I decided I would go a little bolder. I decided to let it hang out.

Some of you may know that I prefer to keep my ostomy hidden under clothing so that I can portray myself, and others with ostomies, as being able to dress the same way as those without ostomies. However, by the last few days of vacation, something inside me just said screw it. Did I know anyone here? No. Was I ashamed of my ostomy? Certainly not. So why was I trying so hard to hide it?

If I wanted the best tan lines, I was going to have to show some bag.

So, I did.

#tbt to last Thursday in Mexico when I said screw it, I’m showing it. #ostomy

A photo posted by Jess Grossman (@jessgrossman) on

I think that’s what’s different about vacationing at a resort. Not the traveling, not the packing, but the freedom.

The freedom from responsibilities, the freedom from worrying about what people might think of you, and the freedom to just be yourself.

And myself includes my ostomy.

<3

———-

Oh, and sorry boys, I didn’t have any pictures of me wearing any mens bathing attire. What I will recommend, though, is that wearing a pair of underwear high enough to cover the bag, with a bathing suit on top, will do just the trick. Of course, you could always just let it peak out the top! 

Don’t forget – Coloplast is still giving away free samples of their products, just click here!

UO_Sponsored_By_Coloplast

Positive Ostomy Awareness is a Cause to be Recognized

Ahh, awards.

A chance to get excited and cross your fingers and hope that you’re going to be recognized for working hard on something you are passionate about. While winning is always fun, it really is true that being nominated is just as exciting. Especially, when the nomination is for the ostomy.

Cause, you know, it doesn’t happen a lot.

For those of you who missed it, a few weeks ago, myself and Uncover Ostomy were nominated for an award to recognize our efforts in the Non-Profit space. The awards were facilitated by the website, Notable.ca, which you might remember from the video interview they did with me, last year.

Notable.ca is a website focused on the young professional community in Canada – the post university, professionally working individuals somewhere between the ages of 25-35. The website focuses on creating content and hosting events for this demographic and is pretty popular… Apparently, over 500 people applied to be nominated for their awards!

Only a select few were chosen. We were one of the select few.

As a chosen nominee, we were supposed to ask our networks to vote for us, to become a finalist in each category.

So, obviously, I asked you guys. Through Facebook posts, tweets, and emails, I asked!

And you guys acted.

Man, you guys are so awesome.

Shortly after the voting closed, I was told that Uncover Ostomy was one of the few chosen finalists!

As a finalist, myself as the representative of Uncover Ostomy was invited the awards ceremony. This was the event where we could all get together, meet the finalists, and watch as the winners were announced.

Told to dress to impress, I started to figure out exactly what I was going to wear (this was a big event!) I mean, I had just bought a few new outfits, but I had already worn them for other occasions! After chatting about it with one of my best friends, Kaitlin, she had an idea. Why not make a statement? I mean, after all, I was there for ostomy awareness. So why not not try something new…

As most of you know, I’m not usually one to flaunt my ostomy in public. I’ve always been a proponent for showing how to hide the ostomy underneath clothes, to be able to act and live normally, you know? But… we were going to the awards specifically for Uncover Ostomy… so why not take a different approach?

So I dressed to impress, in more ways than one.

Trying something new for tonight’s #NotableAwards. Can you see it? #ostomy #fashion #ootn

A photo posted by Jess Grossman (@jessgrossman) on

All fancied up, with my ostomy in tow (and show), I headed to the awards ceremony.

It was at a wonderful venue with gorgeously decorated tables, delicious wine, and gourmet tasting plates. Best of all, it was a room full of other young professionals, being recognized for what they did best in a number of different areas; fashion, event planning, PR, DJing, Entrepreneurship, media, etc. I was in a room full of unbelievably talented people.

Uncover Ostomy was chosen to be among these amazing people. A campaign focused on bags. We were chosen.

We were chosen for a reason.

Despite all of your support and votes, we didn’t win the award for Non-Profit. (siiiigh)

Instead, it was awarded to Erick Bauer, founder of the Friends For Life Foundation, a foundation focused on supporting the Cystic Fibrosis and Oncology unit at Sick Kids, who also won the overall “Icon” award.

So yeah, we didn’t win, but we couldn’t have lost to anyone better! I mean, come on, the guy won the award they gave to the best young professional. It was a honour to be a finalist in the same category as him.

Actually, it was an honour to be among so many other young professionals in the Non-Profit category, specifically from other amazing foundations like the Three to Be Foundation, Childhood Cancer Canada, and the ONEXONE Foundation.  We were in this group!

Who would have ever thought an ostomy campaign would be in the same category as foundations focused on Cystic Fibrosis, neurological diseases, cancer, and feeding, educating, and providing clean water for people all over the world! So what we didn’t win? This is certainly a huge stride in the right direction.

Spreading positive ostomy awareness was recognized as a cause to support.

Public perception is changing. This nomination, and finalist standing, is proof.

I can’t wait to show you what we’re going to change, next…

<3

Life and Times with No Immune System

Last week was an insane crazy awesome week.

On Thursday night, my mom and I drove up to London Ontario so that, the next day, we could watch my little brother graduate from Ivey at Western University. That night, we arrived in the city around 9:30pm, went for celebratory drinks and dinner, then went back to our hotel and got ready for the next morning.

Friday was a whirlwind with an early morning wakeup for me to hit the hotel gym, followed by a quick shower and change to get to the graduation auditorium. Hours later, (hours….) my bro graduated, and we made our way to our favourite local lunch spot back when we both went to Western. After that, we headed over to my brother’s girlfriend’s parents’ house for a lovely celebratory dinner. In between all this, I was working on my phone, my computer, back on my phone, and so on and so on (there was no way I couldn’t work – I have an important job!)

After getting home after 9pm on Friday, we all woke up the next morning to attend the early morning ceremony for my little cousin’s Bat Mitzvah service! We sat and watched her read her part on the podium and followed it with a lovely luncheon full of family and friends. The next part of the festivities – something my now legal cousins and I had been waiting for, for 12 years, was about to happen - an epic party where we could enjoy each others company while being all fancied up and.. enjoying the open bar. I was so excited.

In between the luncheon and the party, my boyfriend and I went back home to change. That morning, I had been coughing a bit, but felt completely fine and ready to party. Except, well, during the morning, I mistakenly messed up 2 different names of people whom I knew exactly who they were… it caught me off guard and weirded me out a bit, but I figured I was just tired. Best way to get over being tired? Work out. So, the boyfriend and I hit the gym before we showered and put on our fancy clothes.

It wasn’t until getting out of the shower, however, that something didn’t feel right. I felt warm and cold at the same time and my breath seemed to be coming out hot. I’ve had this before, but didn’t want to believe it. Sure enough, after taking my temperature, I had a fever.

But the fever was low.

Low enough that I could still attend the party we had all been waiting to attend for 12 years.

Now, all of us with either Crohn’s, Colitis, Cancer, or any other auto-immune disease know the drill. We get sick, and we get sick often. Sometimes, we get sick so often that we barely have a month of health due to our lack of immune systems. This can be a huge hinderance on our social lives, so, over the years I’ve learned never to let that get in the way… at least, to try.

So I put on my party dress and headed to the event.

And I made sure to snap a pic before I knew I would turn into a ball of shivering sweat on the floor.

Party Dress

“You don’t even look sick!” (They always say that, right?)

Luckily, I managed to.. survive. At least, for most of the night. I spent a lot of time at our table, and managed to eat some of the delicious food presented to me. I also stood and applauded for some of the speeches and spoke to a number of family and friends (always making sure to warn them to stay back from me, lest they catch something!)

As the night wore on, I, unfortunately, started to feel my immune system losing its battle against whatever was attacking me. I started to feel fatigued, cold, and cranky. It already being 12am with most people filtered out, I felt the night had been somewhat of a win. Not a success in any means, but at least I had made it through.

I was disappointed, however, to not be able to dance, laugh, and enjoy the festivities as much as I would have being my 100% self…but when this is your normal, you learn to deal.

The drive home, though, was where it started to really kick in. I was shivering hard and not taking anyone’s crap (as my boyfriend and brother cracked jokes in the cab.) I just wanted to be in pajamas and asleep. I got home, threw my purse, coat, shoes, and dress on the floor, got into the comfiest clothes I own and crawled directly into bed. As I’m told, I passed out within seconds.

Now, in my many years of being sick with every thing you could possible imagine, I’ve been quite used to getting a fever, having it stick around for a day or two, sweating it out, and carrying on with my life the next day. Sunday was supposed to be that day. But Sunday came. And Sunday went. I mean, it wasn’t all that bad – a bit of sweating and aching here, but I still had an appetite and wasn’t coughing too much. Cool – I’ll be back to work tomorrow.

Hah.

Haaaah.

Monday morning, I wake up to a fever of 39.5 c (103f). I basically couldn’t open my eyes, move my limbs, or lift my head. I was a wreck. My mom was so worried (because obviously she was checking in on me), that she insisted I go to the emergency room in case I had pneumonia or something worse.

She literally had to carry me there.

I don’t remember being that unbelievably incapacitated since I was sick with Crohn’s.

This was insane.

After a number of hours in emerg, sitting, waiting, blood work, more waiting, chest xray, being poked, prodded… etc, I was discharged.

The diagnosis?

Dr: “Well, we don’t usually see it this early in the season… but we’re pretty sure you have the Influenza Virus.”

(Obviously I have something that they don’t usually see at this time because my body has very little capacity to fight it off…)

Me: (muttering in my armpit because I’m lying in a ball on a gurney and can’t lift my head) “What do I do?”

Dr: “Nothing, just drink water and sleep. You should be over it in 7-10 days.”

7 to 10 days?

For someone without an immune system, those days could be doubled. Multiplied.

I was just hit with a life sentence.

So here I am.

4 lines scratched on the dresser beside my bed, counting the days. About to scratch in one more.

Today is day 5 with an insane fever and inability to move, to think, to eat, and struggling to type this blog without major grammar and spelling mistakes in my hazy fog (I’m sorry if there are any.)

As much as I’m complaining, this has been an enormous wake-up call. As I mentioned above – I don’t remember ever being as close to this sick as back when I was struggling with my disease. I have had a pretty good run lately where, even when I have been sick, I could get over it in a reasonable amount of time(-ish.) I’ve been lucky.

Many of you, however, are dealing with what I am dealing with now, almost every day – if not every day. Not necessarily with the flu, but with the symptoms of your disease, or from other sicknesses you’ve picked up because your body can’t fight off the germs. You are struggling to walk, to move, to eat, to socialize, to work, and to enjoy life. I am in awe of you.

But you can’t let this stop you.

I went to that party, and even though I didn’t have the best time, I was there and with the people I loved. I’m also still working from home as much as I can because my team needs me and I need to be productive. And I am still writing this blog because I had to pay homage to all of you who deal with this all the time.

So, to my dearest immune system and those of all others:

While we are thankful that you exist and work in our bodies to fight off infection in some capaticity… could you please try a little harder?

Sincerely,

The girl and her friends who ain’t got time for this.