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.

5 Years and a Long Awaited Milestone

5 years ago, today (Oct 3), I was sitting on the floor at the front door of my university apartment with my computer on my lap.

I don’t remember much of that moment, but in a daze of necessary hurry, I dropped everything and opened up my web browser.

I typed in: uncoverostomy.com

It was there that I saw the beginning of the change we were going to see in the world.

5 years ago, today, the term “ostomy” was flipped on its head. The widely recognized stereotypical portrayal of an ostomate was disrupted. The repetitive, negative conversation about ostomy surgery shifted. What was once known as a horrible, life-ruining procedure was no more.

5 years ago, today, Uncover Ostomy began.

Over the past 5 years, we have all – ostomate or not – come together to change the conversation. We started changing our own perceptions, we started discussing our own stories, and we started sharing to those around us. Through the years, we have made a significant change in what “ostomy” means to the world.

Now it’s time for a new partner – one who can help take our experiences, our stories, and our voices to the next level.

Today, at our 5 year mark, I am proud to announce that Coloplast has become an official sponsor of Uncover Ostomy.

All posts related specifically to Coloplast will have this logo.

(PS – Click here to sign up for some free products!)

After years of conversations, months of discussions, and a few weeks of finalizing details, they have joined our efforts in changing the conversation around ostomy surgery.

The best part of all? Coloplast is my brand.

I have been an avid customers of theirs for over 10 years, completely and 100% on my own. Even after trying out many products from other brands, large and small, I have always gone back to Coloplast, year after year after year, for over a decade.

Many of you, whether through a blog post, a Facebook message, or a face-to-face conversation have heard me say time and time again that I cannot talk about the specific ostomy products that I use. This has, thus far, been a calculated decision made by all of those involved in the creation of Uncover Ostomy.

Over 5 years ago, as we began putting together this unprecedented campaign full of half-naked pictures baring it all, we had an idea – an idea that we thought could help us fund the conversation changing effort we were building – we were going to ask for the support from one of “the big 3″ ostomy companies.

The idea was that, whichever of the big three ostomy companies joined us in our efforts of changing the conversation by providing a donation or sponsorship, would have theirs, and only their products, featured in the pictures we were taking for the new campaign.  Ie; I was going to wear their product, talk about their product, and show how to use their product.

Sadly, after tireless efforts, all 3 companies gave a resounding no.

This had never been done before. No one knew what the reaction would be. We had no data to support us. Most of all, no one knew if it would backfire.

We understood.

We also pressed on, undeterred by this unfortunate circumstance, and took pictures using products across the lines of the 3 different ostomy product companies. We built the campaign and have been bootstrapping it, ever since. With very little capital, it’s amazing how far we’ve come.

Despite being turned away, we knew that it wasn’t the end of potential sponsorship from one of the big 3. In an effort to keep the door open, we decided that I was not going to discuss the type of ostomy products that I use. This decision was made so that, just in case, an ostomy company did eventually want to sponsor us, I wouldn’t be ruining the opportunity by blurting out my chosen company.

Uncover Ostomy Product 1
Uncover Ostomy Product 2

 

 

 

 

Uncover Ostomy Product 3

Uncover Ostomy Product 6Uncover Ostomy Product 4Uncover Ostomy Product 5

 

 

 

But you all wanted to know.

So, so, so many of you have sent messages – to me, to the Facebook page, through the blog comments, through the website contact form, through Twitter – that it just didn’t feel right to remain silent. This is such a major element of how I manage my ostomy that I knew I was going to have to open up.

However, instead of waiting around for any ostomy company to sponsor our campaign, I decided I needed to go after the ostomy company that I wanted to sponsor us - my brand. It had become abundantly clear that I couldn’t just bring in just any ostomy brand and announce that I used their products. It had to be real. It had to be the truth.

So I reached out to the brand that has been my brand for over 10 years.

As you’ve noticed – we rarely ask for money. Instead, we focus on asking you to share the campaign, talk positively about yours or the ostomy of someone you know, and we ask that you share.

The money, however, needs to come from somewhere else.

Coloplast joining on with Uncover Ostomy is the chance we need to take our campaign to the next level. Over the past 5 years, we’ve reached hundreds of thousands of unique visitors online, we’ve had hundreds of thousands of social media impressions, we’ve shared hundred of stories, and changed an unbelievable amount of lives.

We are also bursting at the seams, ready to grow. So far, we’ve had very little financial support to even think of expanding into the opportunities that are waiting for us.

Now, it’s time.

Before you start worrying about what’s going to happen now, let me be very clear – I have not sold out.

Over the course of the many meetings I’ve had with the Coloplast Global, US, and Canadian team members, they made sure that I knew that they didn’t want Uncover Ostomy to change at all. In fact, they were the ones to bring it up to me, before I even had a chance to demand it.

Going forward, I am still heading up all Uncover Ostomy efforts, the campaign focus is unchanged, and I am still going to blog (complain) about anything that is relevant to our mission.

The partnership with Coloplast focuses on something much greater than what it might seem like, on the surface. Yes, they are providing us money so that I can now talk about their products, but this money allows me to finally open up about the products that I really do use. Furthermore, I will not be talking about/blogging/speaking about any products from the Coloplast line that I do not use saying that I do, and I will not be talking about any products that I do not like. I would never do that, and they don’t want me to, either.

In an effort to be fully and completely transparent, I want you to know that any specific Coloplast sponsored post/event/marketing material that we put out will be clearly marked with their logo. You will always know when they are a part of the picture.

So, what does this all mean?

Simply put, partnering with Coloplast means that we will be able to build upon the mission of Uncover Ostomy. It will allow us to expand our community, highlight your personal stories, and tell the world exactly what ostomy surgery is – life saving.

That is just the beginning.

There are so many more ideas that both myself, Uncover Ostomy, and the Coloplast team have already brainstormed that are just waiting for us to do. This is the beginning of a great partnership. A partnership that will help us all.

I chose to work with Coloplast because they are my brand. They chose to work with Uncover Ostomy because they believe in us. 

We are ready to grow. I can see it, I can feel it. It’s time. This milestone is proof of just that.

To the next 5.

Vegan = Forever the Most Annoying Person in a Restaurant

Before you read, please be advised that I am not a doctor, a nutritionist, a nurse, or a fortune teller. I am merely expressing my own views and experiences, hoping to give you a new perspective on your life and your health. Before you make any monumental changes, please consult a physician.

It was about 3 years ago, now, when I decided to try something just for fun. I had just moved to New York City – a new country, a new apartment, a new life. It was scary.

What was scarier than my big move, however, was the fact that my stomach had been bothering me for months prior. I had gone to my gastroenterologist, and to my surprise, was informed that the stomach pain I was experiencing was in no way related to my Crohn’s Disease. He hadn’t the slightest idea why my stomach had been acting up.

Having been given a clean bill of health, supposedly, I made my move to start my life anew.

My new life began in my small 500sqft apartment, shared with a roommate. I knew her, but not well, and I wasn’t very into shmoozing much upon my arrival. I had already been given readings to do for my Master’s program, (the reason for my move,) so I spent a lot of time in my room, studying.

Background noise had always been imperative to my studies, so I immediately turned to Netflix. We had not yet gotten cable TV in our apartment (thank you Time Warner for your superb customer service), so for the first few weeks in NYC, I used the video streaming service as my study partner.

Scrolling through the choices (not as many back in 2011), I settled upon the documentary genre, focused on food. I had always been really into these types of movies (Super Size Me being one of my all-time faves), so I thought the available film list would suit my needs, perfectly.

A few days, and over 7 documentaries later, I was well-versed in the food producing ways of North America – It’s kind of gross… and the grossness got me thinking:

“Why not, just for fun, try being vegan. I mean, isn’t everyone in New York City vegan?”

So, I went grocery shopping and took the plunge, just for fun.

After a week of cutting out all meat, fish, milk, and eggs, the stomach problems I had been plagued with for months had suddenly all disappeared. I felt totally, unequivocally, 100% better.

Well.

Fuck.

Whether my stomach pain was, or wasn’t related to my Crohn’s, I will really never know. What I do know is that I suddenly felt better than I had felt in years.

Now, 3 years later, I am still that girl.

Yes, I am the girl in a restaurant who asks for the server to list me all of the ingredients – to ask the kitchen, if need be – comprised in a meal, to determine if I can eat it. Yes, I am the girl who needs you to ask the chef to prepare a special meal for me at your wedding. And, yes – I am the girl who can’t eat bacon.

how-can-you-tell-if-someones-a-vegan

Yeah, no one likes vegans. All they ever do is ask about food. “What’s in this? What’s in that?” It’s annoying, right?

Ok, first of all, I am not one of those vegans. (Not like there is anything wrong with them…) I mean, I’m not one of those “animals are people too” type vegans who care about animal rights and all that. I wear fur, I have leather purses, and I used to believe that it was ok to eat meat because the animals were already dead and they would be dying in vain if we didn’t eat them.

No, I’m vegan because I don’t believe in how most animal products are processed and filled with chemicals and I don’t want them in my body.  I am vegan because after accidentally trying it out, I realized I couldn’t turn back.

Though, I respect anyone who is vegan, no matter the reason, because it is damn hard.

Either way, - I have always been that girl. 

I never had a choice when it came to food selection- and many of you who suffer with the often debilitating Crohn’s and/or Colitis might know what I’m saying.

The first thing a GI doctor will tell you as soon as you’re diagnosed with Crohn’s or Colitis is that you immediately need to cut out a long list of different foods: nuts, seeds, certain fruits and veggies, popcorn…

Suddenly, you find yourself sifting through restaurant menus trying to find something that doesn’t have one of those things - and asking the server. Then, if you’re lucky, ending up with a meal that isn’t just soup broth.

For me, being sick with Crohn’s was what made it difficult to find food I could eat, more than being vegan ever has been.

No word of a lie, my mom used to PEEL STRAWBERRIES for me because they had seeds I couldn’t eat (a gem, right? love her.) I also used to have to sneak potato chips into a movie theatre because I couldn’t enjoy the buttery movie snack of the ages due to the hard kernels. I was also that girl who had to bring a dietary restriction list with her on school field trips.

I have pretty much always been that girl.

At least now, I can eat.

When my Crohn’s disease was at its climactic peak, I ended up not only cutting out certain foods, but I ended up cutting out all foods.

I went from a semi restricted diet, to a meal replacement shake only diet, to eventually nothing but a permanent IV in my arm as my source of nutrition because my intestines couldn’t handle any food at all.

They say that, after 3 years, your body will tell you whether or not you can handle such a tough diet. I am not going to lie, there have been a few struggles. I had to spend time learning what was considered vegan, researching protein substitutes, and experimenting with adjusting meals to fit my ostomy, (after all, even with an ostomy, I can’t eat every vegetable or every nut all the time.) But it has been worth it. Having had numerous blood tests to prove that my nutrition levels are healthy, having had more energy than I can ever remember having, and barely being sick at all (a random flare up that lasted less than a few months), I know that I made the right choice.

Will I remain this way forever? Maybe. Maybe not. All I know is that I want to eat however way my body needs me to, and right now that means being vegan. I will do anything not to end back in a hospital bed, in pain, with an IV drip in my arm.

So, to all those who think this:

you_dont_win_friends_with_Salad

I’ll save these delicious, vegan meals for myself.

And stay healthy.

For tips and tricks on how I do it, follow me on Instagram, comment on the post below, or write on the Facebook page and I’ll answer any questions you might have!

The Quarter of a Century Birthday.

I’ve made it.

I’ve survived what life has thrown at me.

For 25 years.

Woo.

I used to love birthdays – when I was a small kid. I mean, why wouldn’t you? Cake, presents, clowns, the whole rigamarole. The best.

Then I hated birthdays. Right as school started, no one was around to celebrate. Or they were, but I wasn’t yet assigned a locker for people to decorate… Not that there were many friends to decorate my locker. (That’s what happens when you’re a weird kid, or end up in the hospital for years, or go to a completely new school without social skills to make friends.)

A few years later, birthdays were awesome again. Frosh week, bars, classes hadn’t started – or I could crawl to a class that started at 2pm the next day (praying not to throw up). Everyone was back in town and ready to party. It was great.

But once more, birthdays sucked. My dad died 4 days before my birthday, and for the past 5 years, I hated that time of year. I also broke up with boyfriends around the same time, moved to another city, and then moved back, and didn’t have many people around to soothe the pain of getting older. Not so great.

This year… this year, though, has been a good one.

Even though I woke up, worried about the wrinkles that would suddenly appear on my face once I began rolling down the hill of old age (I checked – I’m safe, for now), it started off great. I rolled over to see the most amazing guy I could ever ask for who wished me a happy birthday before I could barely get my head off the pillow. He surprised me with a beautiful gift, and started my morning off right.

I ran to work, like every normal day, and was greeted with birthday wishes from my whole office, accompanied by special cupcakes just for me (but I shared, don’t worry.)

Then, I spent the evening enjoying some delicious food with my family. What more could you ask for?

I couldn’t get a picture of the family, though, because throughout the day, I kept receiving heartwarming messages from friends, past colleagues, old roommates, cousins, UO supporters, acquaintances, all wishing me a special day – so many, that my phone died. (I’m still getting messages now, as the night goes on, but I plugged it in!)

Maybe it’s maturity? I mean, 25 means you have to be mature, right? Or maybe it’s because, as the years have gone on, and I’ve been through so many things, that birthdays are really just about making it through another year. I mean, making it through 25 years is not something that I thought I could do. I don’t even think my mom, at one point, thought I’d make it this far.

But here I am.

As my dad would say, I’m “over the hill, feeling the wind in my hair as I roll down the other side.”

Here’s to 25, more. And then some. Right?

Depression and Chronic Illness

Ever since the news broke of the suicide committed by one of my childhood heroes, I started to formulate the blog in my head.

I knew I wasn’t going to write about how Robin Williams was an inspiration for me as an aspiring actor. Nor was the blog to be about how I always wished he could be my crazy uncle who sat at the end of the dinner table making wild, obscure gestures and jokes while we tried to eat. And I definitely was not going to follow the path of the rest of the content marketers on the internet who wrote about Williams just to get attention from the public.

No, this is about the bigger issue.

Reports have been circulating that Robin Williams committed suicide after suffering through the early stages of Parkinson’s Disease(1).

A chronic disease.

According to the National Parkinson Foundation, more than half of those who suffer from Parkinson’s Disease also experience clinical depression (2).

In fact, it is widely known that depression is extremely common in those suffering from chronic diseases.

As someone who has dealt with the ongoing pain and suffering of a chronic disease, this struck a chord with me.

I’ve never written about this topic before, and to be honest, I’m not entirely sure why. Maybe it was because it never really seemed important enough to talk about. Maybe it was because it was actually just hiding beneath the thoughts and words I was writing about other topics. Or maybe it was because it’s not something one just wants to talk about. Either way, today, I feel, is the day to bring it up.

Years ago, during the toughest part of my disease from the ages of 11-13, I was suffering excruciating, unending pain in my stomach, I was unable to eat, I did not have enough energy to sit up, and I spent most of the time in the bathroom. But, beneath all of the physical pain and anguish I was feeling, there was also something going on in my head. I would lie on my bedroom floor, stare into the mirror on my closet, and look at my pale, sick skin, deep into my grey, glassy eyes, and say out loud to myself that I wished it would all be over.

While I was never officially diagnosed by a clinician, I feel as if I can safely say I was depressed. The Crohn’s and Colitis Foundation, (now known as Crohn’s and Colitis Canada), has reported that people with Crohn’s Disease and Ulcerative Colitis have a higher risk of developing psychological problems, such as depression, than the general population (3).  I believe I was one of those people.

I had depression.

During the worst part of my disease, my parents tried to get me counselling. While it was thinly veiled as having a social worker come in just to “hang” with me in my hospital room, I was smart enough to know what they were trying to do. And, being the stubborn kid that I was (I’m a stubborn adult, now), I refused. I told my parents that I didn’t need any therapy. After all, I knew that I would be happy again once my pain was gone.

To be honest, for quite some time, I felt I had been right.

Once I recovered from ostomy surgery and felt healthy again, my depression seemed to go away after the following few months. I never experienced a day where I knew it was just gone, but I had started to realize I was happy way more often than I was sad.

Pft, therapy. Who needs it?

It wasn’t until the passing of my father, 5 years ago, today  that the feelings of sorrow and despair crept back into my mind, engulfed my every thought, and was felt through every bone in my body. The man who gave me my love for computers, the man who told me inappropriate inside jokes that I wasn’t supposed to tell my mom about, and the person who held my hand through almost all of my unpleasant and painful medical tests, had just suddenly disappeared from my life. My daddy was gone. I was a mess.

Was I more susceptible to a depressive episode because of my chronic illness? Was I depressed because of the medication I was on? Or were these feelings normal from the loss of a person so meaningful to me?

To this day, I’m still unsure.

What I do know is that after my father’s death, I actually went to get help from a counsellor. Yes, I gave in and listened to my parents.

But you know what? It helped me more than I could have ever imagined. Not only was I able to talk about the feelings of losing a parent and learn to deal with those emotions, but the therapy I went through helped me work through the feelings and thoughts I had experienced through my chronic suffering so long ago, that I had never dealt with.

I have not had one of those depressive episodes since those few months after my father’s death.

Do I think that this is the end of depression for me?

Absolutely not.

As someone with a chronic illness, it would be naive of me to think that. With pain comes sorrow, and if I am to fall back into the pit of suffering that is Crohn’s disease, I am almost certain the feelings of despair will follow.

But, if this ever is to happen to me again, I now understand that I need to get over my stubborn ways and accept help. Because, you know, they call it “help” for a reason. It helps.

Luckily, I haven’t been quite as sick as I was back when I was 13, and as 5 years has now passed since my dad’s been gone, there is little I have to depressed about. I am living a happy life with great friends, an amazing boyfriend, an awesome job, and a family that I love. But, if I am ever to get into a situation again, where I feel like I have fallen into a pit of despair, I know there is help.

I knew I needed to write this blog to bring attention to the depression that many of us are susceptible to because of our chronic conditions. Whether you have suffered, are suffering, or haven’t recognized your depression, I wanted to take the time to tell you that you should be reaching out for help – in any form.

Whether it comes from a counsellor, a family member or a friend, or comes from simply asking to talk to someone on our Facebook page, I just want you to know that it does get better if you ask for that help.

Please ask.

<3

If You Can Do Anything With an Ostomy, How Do You Change the World?

A few weeks ago I contemplated writing a blog. I was sad and disappointed in myself and I had this overwhelming urge to apologize to you all.

After thinking about it over and over again… I felt it might have just been better left unsaid. And unsaid it went.

But here we are and here I am writing about this very thing. I am writing about it because I’m no longer just sad and disappointed in myself, but angry and frustrated at the society we live in.

Beware, there might be some swearing and there might be some harsh statements. There may also be some things you don’t agree with. And, as always, that’s fine. But what you’re about to read comes straight from my broken heart.

It began the week that we’re all quite aware of – when “ostomy” became the word on everyone’s mind. When that girl from the UK with an ostomy came out about wanting to be a model.

I saw an early article about this woman. I thought it was great to see some traction in the ostomy space and was happy to see it. I even kind of laughed at her storyline about how she wanted to be a model, because, well, I’ve made it very obvious that having an ostomy doesn’t stop you from professional modelling.

At least, I thought I had.

It was the following few weeks, when her story started going viral, that I was on the receiving end of hundreds of notifications. I was bombarded with Facebook messages from Facebook “friends” – people I knew well, people I hadn’t spoken to in years, people who knew me through other people… who were messaging me to tell me about this girl and share one of the hundreds of articles about her.

At first, I thought it was nice that these random people remembered about me and my ostomy and that they were thinking of me. However, that quickly faded as I began to see just how into this viral story these “friends” of mine were.

These people were not only sharing the article with me, but were sharing these articles with everyone in their social networks. These “friends” were sharing the articles written about this girl, and just in awe about how amazing her story was. These “friends” thought she stood for something.

A story about a woman who had an ostomy and wanted to overcome it to become a model. That was her story.

And they loved it.

What the fucking fuck.

Not a single one of these “friends” had ever once shared any of the plethora of inspiring stories/pictures that many of you have shared on the Uncover Ostomy Facebook page.

Not once had any of these people shared a blog post I had written, highlighting how the ostomy has never gotten in they way of doing anything, including professional modelling.

Not once had these people even shared an article written by a national publication highlighting our efforts.

Not. Fucking. Once.

But here’s this girl, just showing off her bag, wanting to be a model. And they’re sharing it.

They’re loving everything about it.

“Hey, isn’t this what you do? She’s amazing” (It is… but like… what?)

“Hey, have you seen this girl? They’re definitely just writing about her because she’s pretty” (Ummmm thanks?)

“Hey, you know that girl in the news made me think about the ostomy so can I ask you a question?” (REALLY. Like, THIS girl makes you want to ask about the ostomy, but our community of over 6,000 people doesn’t make you curious!?)

I even had another person tell me Uncover Ostomy didn’t have any shareworthy content.

Nothing anyone would ever want to share.

Not.

Anything.

Bag_Laying_website

It was literally boggling my mind that this one girl was getting all of this attention. Actually, it wasn’t just making me question what I was doing, but it made others question it, as well.

Uncover Ostomy

Yes.

Uncover Ostomy is reaching its five year mark.

And in one week, this girl accomplished everything I had spent every minute of my free time trying to get us to accomplish, together.

And then it hit me.

This sense of failure. It literally clouded my entire life for over 3 weeks.

I started to feel sick. I was depressed. I couldn’t focus. I cried.

I don’t cry.

I started Uncover Ostomy to get the public to see the ostomy for what it is – an amazing, life changing, gift. 

And after 5 years of spending my time writing, networking, promoting, urging you all to join me and share, and all of you doing just that - some girl comes out of the woodwork just with the hope of becoming a model and the world thinks that this is so fucking amazing.

You want to be a model? So do hundreds of thousands of other women and men out there.

You want to change the world?

Cause we do. 

While the ache of failure radiated through my bones, I knew I couldn’t sit by the sidelines. So I started to reach out to publications that had mentioned this girl and to give them the cause that had been missing from the story. To give them our story.

Thanks to some amazing publications, we got a bit of press – some really good press. (By the way, thank you to all those who shared the pictures that made it into this article!)

But I was still getting a lot of “no’s.”

I had been used to the “no’s” from the media. When we started UO, we were often rejected because the ostomy wasn’t glamorous enough – even though Uncover Ostomy was meant to change that. It didn’t matter – it was still too taboo.

So, finally, this girl opens up the conversation and I try and swoop in and let them know about the goal we’ve been trying to reach for almost 5 years, and most journalists just came back to me with more “no’s.”

They said they had hit their ostomy “quota” and that there really wasn’t anything left to write about. (Apparently, attaching an actual cause is not a good addition to an already buzzing story).

Defeated, at least I understood their reasoning. I got it. That made sense. Too much of the same content. Ok.

Until today.

Today, there has been another influx of ostomy related content focused on an individual being a model.

Except for the fact that the publication writing about this? One of the exact ones where I was told “there was too much ostomy content.”

They had our website, they had our Facebook page, they had my contact info, and they had our pictures.

And they fucking ignored it all.

I’m furious.

For almost 5 years now, we have come together to build an amazing place full of support, courage, and hope. An online community where, together, we are working to change the negative stigma surrounding the ostomy. We have a goal. A cause. A mission.

But society doesn’t care.

So, here I am, sitting, writing, fuming, livid. Feelings of failure wafting back over me, tears streaming down my face.

Selfishly, I feel like I’ve waisted the past 5 years of my life.

Overwhelmingly, I feel like I’ve failed you all.

Angrily, I contemplate how our society prefers one girl’s dream to be a model, over our dream to change the world.

Here I sit.

Not knowing what to do next.

I know I want to change the world, I just no longer know how.

—————-

And yes, you can be a model with an ostomy.

You can do anything.