Happy Halloween everyone!  But better yet, Happy Awareness Month tomorrow.  As most of you know November is IBD awareness month and we at the gutsy generation are so excited to continue spreading awareness about these crappy diseases.  We encourage all of you gutsy folks on facebook to change your profile picture to a picture of gutsy for the month of November to get people talking and get our mission and ideas out there.

40 KM

So it’s about time I fessed up to my latest endeavor: going to Peru. 

Say what? Yes, I am planning on going to Peru in March - but for a very specific reason: raising IBD awareness. Now you’re probably very confused and wondering what Peru and IBD have in common. I am joining a team of people who are climbing Machu Picchu to raise awareness about IBD - “changing attitude with altitude”. We’re going to be hiking 40 KM and I’m SUPER EXCITED. 

When I was in the hospital this past time, one day they did a scope and the anesthetic completely knocked me out and it wasn’t until around 9 PM that I felt more like myself again. It was my second wind, or really first wind, of the day, and with my renewed energy, I whipped up a blog of my own to explain about my March Peru trip.

It’s a massive goal, something I’ve never taken on before, and as much as it scares me - like, will I be well enough to go? Can I raise the money? - it excites me and I’m so passionate about it that I owe it to myself to try. I’ve never been out of the continent, but it seems like a wonderful excuse to traipse around the world to raise awareness about IBD. If there is a take-away message from my insanity, it’s that IBD shouldn’t get in the way of setting and achieving dreams - even though it does - but it shouldn’t get in the way of persisting. 

And as a side note, November is rounding the corner, which means awareness month! Be sure to sign up for our awareness event of changing your profile picture to Gutsy to get our message out there this month. 

Happy Friday everyone!

Jennie  

Strange Men and Lots of Boxes

Do you ever wonder what someone must think of you in a ridiculous situation?

I do. I wonder what my classmates think when I walk back in the classroom after a month, when the security guards watched my Mom come and go from the dorm for a couple of weeks, and most notably when strange men are waiting with large boxes for me in the lobby.

Note of clarification: the strange men with very large boxes are people from the healthcare company bringing me my bags of TPN. Just in case you were wondering.

My friends and professors are happy to see me back on campus, they smile and say, “I’m so glad you’re feeling better!” I smile back and thank them, and unless it’s a close friend, that’s the end of that conversation. But to those I know better, I tell them that I’m still a little broken, just out ‘on pass’ so to speak, having convinced my doctors to let me go home on TPN so that I could get out of the hospital. I’ve been on NG tube feeds and other types of home treatments, but never TPN. It’s kind of fun pretending to be a nurse as I set up the tubing and tend to my PICC line, though I highly doubt the average 20 year would find the same satisfaction in flushing a line. I set up the TPN by dinner time, and 14 hours and a big bag of nutrition later, I unhook myself and go off to classes. 

And that’s fine and dandy, and better than being in the hospital, but my new schedule makes evening activities more difficult. On Tuesday nights I have yoga - and even though I just got out of the hospital on Saturday, I felt well enough to go and desperately wanted to. So I went - with my yoga bag and TPN churning in a little backpack. Of course it was initially awkward walking into the school gym with IV tubing and doing yoga like that, but to be honest it wasn’t that big of a deal and it felt better to be back amongst the living (even with TPN) than stuck in a hospital bed.

There are 8 weeks left of the semester, but in reality mine just started. I walk around campus thinking of the PICC hidden under my sweater and the ostomy hidden in my jeans. The dorm security guards let the strange men with large, heavy boxes come up to my room to drop them on my floor. And while I wonder what my peers think, it doesn’t really matter. I fought for my right to be back on campus, and after a month of being in the hospital and so much of my life taken up feeling sick, there’s no time to waste living my life right now. 

In life, there isn’t time to be sick. Unfortunately, we don’t really have a choice. But we do have a choice about what we do with our time - so why not make it the very best it can be? I’m trying - even if it includes strange men with large boxes, it’s a fight I’m willing to fight.

Jennie

for the love of congress!

Home from another very inspiring congress!!!

I spent this past weekend in Toronto for the CCFC National Congress and once again I was completely blown away by the amazing spirit and commitment of this amazing group of people!  For those who don’t know Congress is a big national conference where CCFC staff and a representative from each of the Chapters in Canada meet to go over the exciting things in store for the organization and contribute ideas to help develop our national efforts to raise funds and FIND the Cures!  It is a time to make connections and share big ideas; and that we certainly did!  From the CEO, COO, board members, founder, to volunteers, everyone plays an important role in the structure of the weekend and the collaboration that takes place.  As a member of the Youth Advisory Council I was so very fortunate to have the opportunity to attend this amazing 4 days.  The opportunity to spend time with Marilyn Finkelstein, the founder of the CCFC is something that I will never forget.  Her heartfelt personal story and complete dedication to finding a cure for Crohns disease and Ulcerative colitis is contagious and her amazing spirit and down to earth loving, caring, thoughtful personality makes her someone I will look up to and strive to be like in my life.  The opportunity to sit down and chat with the COO, CFO, award winning doctors and volunteers is truly an awe-inspiring experience.  Being surrounded by the many courageous, committed volunteers and staff at congress gives me the drive and confidence to continue this fight against a disease that not only hugely affects my life, but also that of so many that I care about so deeply. This inspirational weekend and the truly amazing things that are yet to come for the CCFC has lit another fire under me and driven me to push harder to find fun, and exciting ways to get youth involved in our mission and raise the funds we need to put an end to this crappy ( pardon my pun) disease forever! (My first celebrity moment when I was asked to sign my story in our book “Tales from the Throne” was kiiiinda cool too :) ) Although I love congress and I love the teamwork, friendship and excitement it creates, I can’t wait until the year when it no longer exists, because we have found the cures!  This year’s theme is to THINK BIG, and we at the gutsy generation would love to hear all of your amazing ideas and big thinking!  Please email us at thegutsygeneration@ccfc.ca with all of your BIG ideas!!  Together I know we can make a difference!

Shelby xox

Ashley is GutInspired

Hi Gutsy Gals and Guys,

I wanted to share with you my video: I am "GutInspired" .

http://www.youtube.com/watch?v=NFkLWT93iUI&feature=youtu.be&noredirect=1

Hugs,
Ashley


Gut Inspired is a group of Canadians living with Crohn's disease and ulcerative colitis who have joined forces to increase the awareness of inflammatory bowel disease (IBD) in Canada, offer support for individuals living with IBD and provide personal experiences to assist others living with IBD learn how to better manage their disease.

Share your story, upload your video, at:  gutinformed@gmail.com

Goals Completed

Hi Gutsy Generation,

I wanted to give an update on how those goals I set out for the year went: I rode 200km with my sister in the ride to conquer cancer... I donated 15  inches of my hair to make wigs for kids with cancer... I flew to Grande Cache Alberta to participate in the Canadian Death Race with my team of 2 guys and I was ready to complete my portion of it but I didnt have the chance: my team member didnt make the cut-off time, so my team was disqualified.... not to worry.... the experience was amazing and I got to dance to Glass Tiger live outside surrounded by the mountains. I saw a bear and its cub :) - that was pretty cool. We ventured to Lake Louise before flying home and I felt I made up for not completing my goal in the Death Race by climbing a 9800ft Mountain.... it was amazing. I was scared to death at some points because when we got half way up we were confronted with a Bear sign.... we had to have Bear spray... and although we didnt see a bear... it was an exhilarating feeling thinking that we could possibly run into one. It was also pretty amazing using my hiking poles and at the top of the mountain, looking down at the little itty-bitty lake louise below us. I am so grateful for the health I have today and this experience I was able to do.

Goals are great, and without them I wouldnt have been motivated to push the limits... or strive to experience life more fully.

Hugs,
Ash

Try Again

Discharge attempt #2: cross your fingers, this could be a bumpy ride.

My grand total of a month in the hospital, with my less-than-a-week break discharge, on the 16th floor overlooking the Boston skyline has finally come to an end. Hopefully a permanent end, and not just a quick escape before I head back again. I have spent more time in the hospital than I have in classes. I have one class that’s only once a week that I have only been to once, my friend in the class texted and was like, “Are you still in this class?”

Thank goodness that I had fought to get and keep the PICC line and had insisted they save a line for TPN. A few nights ago when things were desperate and annoying and confusing, I felt like school was a hundred miles away and had no idea how I’d possibly get back there. And then it dawned on me - give me some TPN so I can get some bowel rest and some calories and let me go home while they figure out my insane gut. It took a lot of convincing and crying on my behalf, but the doctors went from having no intention of doing it, to signing off on it. It seems like a ridiculous fight just to return to classes, but if that’s what it takes, then that’s what it takes and I’m proud of myself for fighting for it.

Recovery is not my strength. I fight against it, wish it away, struggle with it constantly, and here I am about to wriggle through it once more. But I can only do my best, even if my best is less than ideal, but oh well.

The very hardest thing this past week has been not being able to go to Congress - the CCFC’s national conference. It is my favorite time of year, the most amazing and inspiring and empowering weekend and I cried many times over knowing that I wouldn’t be able to attend it this year. Yes, there’s always next year, but it doesn’t soften the blow for me right now. I hope everyone is having so much fun at Congress and taking lots of pictures for me to look through later on Facebook! 

So here I go again, deep breath, heart pounding, out to try again and make it this time.

Jennie

No Cigar

I was SO close - but no cigar. And when I say ‘so close’, I really mean it; I was out of the hospital, amongst the living, eating, sleeping in my own bed. But such things can apparently only last so long.

I woke up yesterday morning in severe pain and nausea and a barely full ostomy bag. My Mom, who had flown in to transfer me from the hospital to college life, was asleep on the air mattress on my dorm floor as I sat up and cried and knew that something bad was happening again. I got upset, emailed my doctor, then headed to my 8 AM class to distract myself and not to miss another class, came back to my room, and packed up to come back to the hospital.

As I was walking back from my class, my belly swirling in discontent and my PICC line and ostomy hidden beneath my clothing, I tried to keep myself from bawling on the street. I just want to be able to go to classes and get my degree and have my life, I don’t want to go to parties or college things like that, I just want to sit in a classroom without having an obstruction. Apparently it’s a whole lot to ask of my life at the moment. I don’t think there’s something to understand, asking ‘why’ is more painful because there are no answers that can soothe or satisfy me. 

As irony would have it, they’ve shipped me back to my old floor and my old room. The nurses looked at me with sad smiles and melancholy welcome back’s, I asked them if they’d missed me. One nurse came in and said, “Did you ever leave?” 

I have spent more time in the hospital this semester than in a classroom by far, have become an expert hospital packer (packed in under ten minutes for the hospital thank you very much), and know virtually every nurse on the floor. I have to believe that I will get my day (at least) in the classroom, come hell or high water I will stay in my classes and have my life. As of late my disease feels relentless and unfair and overwhelming and ridiculous. But one day it will feel a little better, even if it’s a fleeting moment, and I will be really close to having what I want.

Jennie

Thursday Instead of Friday

I have written blog posts for the past four Fridays exactly, and where has it gotten me tonight - but a rainy, and thundery Thursday in a Boston hospital, belly aching slightly and nestled into a bed full of blankets and pillows.

My life is like the current reminder on the television, ‘Please Stand By.’ When I came into the ER two weeks ago, I was planning on a 24 admission at most, but certainly nothing that involved a real admission and roommates and rounds of doctors and crying and needles and real pain and frustration, but just because I didn’t bargain for it clearly didn’t mean it wasn’t coming to me.

As always, it seems like my admission was a trial of complications and miscommunications - not listening to the 20 year old girl and instead of the doctors all of the time. But there has to be a compromise. This morning, the doctor came in and smiled and me and said, “You were right, weren’t you?” Duh, you think so?

There have been several times when I have collapsed in my hospital bed way too early to be considered a real bedtime (aka 7:30-8 PM), wrapped in a friend’s sweater crying, feeling utterly overwhelmed and annoyed and unsure. And once the tears were dry and I was able to speak without sniffling, I realized that all I wanted was a big hug and someone to tell me that they loved me and that everything would be okay - even if it seemed like a total big lie. 

I know that I am really honored with so many people that care about me, and yet I find myself completely incapable of asking for help. I think it’s a completely admirable quality in a person, I just can’t seem to rouse myself to do the same. I don’t need to prove anything to anyone, and yet was stubborn to my Mom insisting that she was coming to take care of me. But let’s face it - at the end of the day right now, I just want to be a little girl held by her Mom and being told that everything is going to be okay.

When nurses - who have been so lovely and wonderful - comment on my schoolwork and my tip taping away at my laptop, they say that I must be so organized and all of the like. And while that’s a very nice compliment, the truth is that it’s simply practice. Practice and determination, of course, but mainly good ol’ fashioned practice about how to be sick and be a student, the two are no longer mutually exclusive things.

I didn’t want to start my school year in the hospital, but then again, I don’t think anyone wants to start any type of life in the hospital. But it happened, and so life will go on. They found more Crohn’s - duh - they finally managed to get a PICC in for fluids - duh - and discovered that I was in fact the biggest expert of all - DUH. 

This post isn’t terribly anything - inspiring or exciting or whatever. But here is what it is - it’s a post on a Thursday, it’s a slight change of pace, it’s my determination to pick up and carry on and live the life I want. 

I was telling a friend the other day that this isn’t the life any Mom or parent wishes for a child, but by the very same token, it is not to say that it’s not a life worth living or a life that won’t be beautiful. It’s just one that will have more bumps in the road, more bruises in my hand, my scars on my belly.

Days can suck when you have IBD. And that’s okay. If we pretended that they didn’t suck, we’d be nuts. But days don’t have to - and won’t always - suck. So in the words of a good friend of mine, keep your chin up, your gaze steady, and your stride strong - you will get there (and so will I), IBD and all.

Jennie 

8 Years Running... and Still Tripping

On September 23rd, 2003, I was wheeled into the OR for my first colonoscopy. I was scared, I was young, I was in pain, and I was nervous about what was going to happen. When I woke up from the anesthesia and was met with my teary eyed parents and the diagnosis of Crohn’s, I had a sense that everything would be okay.

I have no idea why I felt that way. I think it was mainly because I didn’t know what having Crohn’s really meant, I thought it was something that required a yearly blood-draw or a pill and not the reality that so many of us have come to endure. 

But this post isn’t about reminiscing and being newly diagnosed and nostalgic. No, this blog post is about my current hospital stay. As per my last post, I had missed the first day of school with a blockage and had spent the day hooked up to an IV and chilling in a hospital bed. Come Wednesday of last last week, the 14th, my belly had grown tight and the pain began to spike. My goal was to wait and if I needed I would go to the ER after classes on Thursday (since one of my classes is only on Thursdays for 3 hours and I didn’t want to miss it, or my other classes for that matter). But life - or mine at least - never goes according to plan. I lived through Wednesday doing all of my activities, even having vegan pizza with my good friend Maya (because I love seeing her and because vegan pizza is AMAZING). Then I put on a Fetanyl patch, and went to bed. Come 6:30 in the morning, it was time to drag my sorry bottom to the ER and skip my classes. I was ready for another hefty day of fluids and loopiness from pain meds and draining my iPod battery, at least I was until they told me they were going to admit me. Oh. That was unexpected. I had none of my textbooks, no spare undies, no deodorant, and no idea about what I was going to do. 

It was only the second week of class and I was taking my second ‘vacation’ pass. Doctors began to flood in my room, to be honest they came in so fast I didn’t know all of their names or official titles, all they were interested in was my bag. My room is on the 16th floor and since I was the first person in the room, the porter decided that I was nice and could get the window seat. It is a beautiful, two-window view of the Charles - something pretty to look at if you can forget that you’re looking at it from a hospital bed. I was scheduled for test after test, and whisked off in a squeaky stretcher all around the massive hospital. My friend stole into my dorm room (well, okay, that’s not true, the RA was with her) to collect my books and important things (cough, cough, my computer and a season of Grey’s), so I was mostly all set.

I won’t bore you with the details of the tests and the other fun experiences I have had, but this is my overall experience/moral of the story. I’ve spent several days overwhelmed and crying - doctors had differing opinions (like polar different), I was here all alone and feeling very small and helpless and directionless. How do you rouse yourself to get back up when all you want to do is throw in the towel? I don’t know, but at the very least I knew I owed it to myself to try.

Today I will (this better not jinx it!) finally get my PICC line and some fluids (for the first time in over a week). I will finish some more homework/reading. I will watch some TV. I will revel in my joy about last night’s Grey’s Anatomy season premiere (SO intense, so good, so Grey’s). Soon, I will get back to my dorm room, back to eating (product placement is incredible and I really want anything advertised on TV right now), back to classes, and back to my life. Right now I’m in pain, I’m exhausted, I’m in the hospital, I’m drugged, but hey, I’ve got a nice view. 

Here’s the nostalgia if I may: 8 years ago today is a day I will never be able to forget. I can’t believe it’s been so long and more than that, I can’t believe how much has happened to my body and how much I have done in those years. As I grow older and continue to have ‘disease birthdays’, I know there will be even more things to remember, more scars, more stories to tell - and many, many more things to be grateful for.

Jennie