Friday, December 31, 2010
Like virtually everything – happiness and health are all relative. Particularly for IBDers, health takes on a different notion, staying out of the hospital vs. being admitted, being in remission vs. spending life in the bathroom – but it rarely means no pills or no doctors or no painful tests. That is not to say that we can’t be happy, happy people (or, in Grey’s Anatomy terms, shiny, happy people), it just means we’re hiking up a hill when everyone else is chilling on the plateau.
We say it again, and again, and again – happy and healthy, happy and healthy – as if by saying it, it will happen. In some ways, those wishes are alike our idea of fate – regardless of what we do, it will happen. But that makes little real sense – we know we have to work for what we want.
Happy and healthy doesn’t – and shouldn’t – mean predictable. It shouldn’t put us in a turkey-coma like state where all you want to do is sleep, rather happy and healthy should be energizing, exciting, thrilling, fulfilling, and inspiring. Six months ago, I would never have imagined owning literally hundreds of ostomy bags or laughing at the grocery stores’ reusable bag plea ‘BAGS FOR LIFE’, but my colon clearly had other plans. When I decided to take up running (which yes, seems like an oddly impulsive habit to instantly have), my Mom asked why, to which (after a moment of thought) I replied, “Because I can.” I have two feet, sneakers, and am healthy enough to do it.
Personally, happy and healthy means fighting harder to find the cure for IBD, working hard in my classes, eating EVERYTHING I can, running, doing yoga, babysitting kids, reading, watching Grey’s Anatomy, and having the opportunity and energy to do what I want.
And so, I do not only wish everyone a happy and healthy year, but instead a year filled with laughing so hard it makes your sides hurt, friendships that make you happy, people who love you because you’re you, the best food you’ve ever eaten, well-deserved success from hard work, and many moments that make you so happy to be right where you are.
Sunday, December 26, 2010
The last 3 Christmas’ however bring me back to Christmas 2006, and therefore the word Christmas reminds me of being sick. I started to get Crohn’s symptoms in October 2006, and by Christmas time it was just unbearable. I still hadn’t been diagnosed but I was on many wonderful Crohn’s medications, such as prednisone. I was spending a fair amount of time in bed, regardless of the medications. I’ve looked back through pictures of Christmas day, and you can see me in the background behind my niece. I’m lying on the couch, and you can actually see the pain on my face.
Christmas dinner for us is generally on boxing day, we’re all just too tired Christmas day. I wanted so bad to be able to sit at the table and eat, even if I could only handle some potatoes. By this point of my sickness I was blacking out every blue moon. I got up out of bed, and tried to go eat supper, but when I walked around the corner I blacked out. I could normally just keep walking and pretend nothing was going on, because I would generally only black out for a couple of minutes. However, this time, a waist high box stood in my way! How do you explain walking into a box that big? I couldn’t, so I just turned around and went back to bed. Mom got me a hot water bottle, and dad came in after he ate and fed me some potatoes as I laid in the fetal position, rocking and crying. At least I still got my potatoes! ☺
When I was sick only a few tricks helped manage the pain, one was to lay in the tub in very hot water for hours! I would set up my DVD player, watch movies, and relax as much as possible. I would put on underwear and a tank top, and relax, not a care in the world, because the hot water made me relax, and eased the pains, something I required at least once a day! I actually had to get up from a family supper over Christmas and go get in the tub because I was in so much pain, but everyone understood. My Aunt even came into the bathroom to say goodbye when they were leaving.
I missed out on so much that Christmas, but I’ve made up for it all. Actually, I missed out on a lot when I was sick, my 19th birthday, Christmas, Easter, to name a few, but there are more birthdays, more Christmas’ and more Easters to come and I will make the most of every single one!
“I have Crohn’s Disease, Crohn’s Disease does not have me”
Saturday, December 25, 2010
Got some extra toilet paper.... we know you do!! Forgo the popcorn and garland this year and add some decorative toilet paper to your tree today!
Have a very merry Christmas and a very healthy new year,
Friday, December 24, 2010
And while I (and everyone else) still get my fair share of these sayings thrown out in passing, I have also been pleasantly surprised at the genuine concern my hometown inhabitants have expressed.
People notice different things about me now - but mostly that I have more color in my cheeks. It makes me smile, of course, but also wonder what I looked like this past summer and 7 years prior - pale, surely, and possibly slightly sullen, tubes and all. But now, with my secret weapon of an ostomy bag, I’m ready to take on the world.
The other day, my younger sister looked me over and, with her eyebrows knitted in confusion, said, “Wait, where’s your bag hiding?” This made me laugh and when I lifted my shirt to show her, she said, “Oh, you can’t even see it” to which I replied, “Hence, the point.”
I have strapped myself in yoga gear, have done my downward dog and sun salutations - all while covertly going to the bathroom in the bag - and no one would ever know. As I engaged in a rather skilled pillow fight the other night with the kids I was babysitting, I was thrilled at the uneventfulness of my bag in relation to the rest of my life. The sheer fact that a young child can bounce his or her way into my lap, their tiny weight against the bag, and that nothing will happen is ordinary and marvelous. It’s not only the surgeon or other people telling me that I can do anything, it’s experiencing it for myself.
Last night, when I was drawing a picture of the little girl - let’s call her Gracie, who’s 4 - and said to her, “I’m going to use red for Gracie’s lips”, she later looked in the mirror, laughed grandly, and reported, “I DO have red lips!” As I look into the mirror, I do not see the girl with the NG tube, or the PICC line, or the girl with black circles under her eyes, pale as the moon, or the girl who is crying from the pain. I see the girl who survived all of that, coming out smiling, the girl who for the first time in her life, has real color in her face and her life.
Better yet, have you made someone laugh today?
Day 11 challenge: tell a joke to your pharmacist, or anyone at a Christmas Eve party tonight! Spread some cheer, and some jokes, as you prepare for Christmas!
And now, the oldest joke in the IBD book - "Rectum, it damn near killed him!"
Wednesday, December 22, 2010
There has to be that one person that helped just a little bit more, cared just enough, or was even just there for you! I know I have a few. How about letting them know just how thankful you are for them! Let them know just how much they influenced your life!
3 Days until Christmas everyone!!!
Tuesday, December 21, 2010
12 Days of a GG Christmas: Day 9: Give a Christmas Card to Someone You Admire or Someone You Dont Know Well
Its nice to feel appreciated, if you like, you can even add a little note touching upon the good qualities that you like in this particular person. Get creative! have fun :)
Monday, December 20, 2010
12 Days of a GG Christmas: Day 8: Buy a coffee for the person in front of you in line at Tim Hortons
How nice would it be to have someone buy you a coffee? Especially at this time of the year when things are so busy, you could really catch someone off guard and with the Christmas spirit by doing something really small for them.
So this is how its done:
1. There's always a line up at Tim Hortons... even at the ones that are right across the street from each other :P ... order 1 extra coffee in addition to yours. Leave it with nothing in it for the person behind you to put in the amoutn of cream and sugar that he/she likes.
2. Say Merry Christmas with a big white pearly smile ;)
Sunday, December 19, 2010
What the heck?!?!?! Yes! Challenge yourself to do something that is out of your normal schedule or way of going about your day. Sometimes these experiences can be the ones that add your life the most!
So, to complete this task (and its a tough one) ask yourself honestly what makes you nervous, or scared... why does it make you nervous or scared? For most people, its public speaking. Jerry Seinfield said in an episode of Seinfield that the number one fear in the world is public speaking, and number two is dying... so at a funeral, most people would rather be the person in the casket than the person giving the speech. lol. Interesting. But I can definitely say public speaking makes me nervous... but I do it anyways :) (and I joined Toastmasters so that I can do it every week ;) haha)
try it for yourself - and share what you did!
Here's a few examples:
1. Say hi to the stranger beside you on the bus and initiate a conversation
2. Speak up to someone who hasn't treated you fairly
3. Make a commitment to learn a new hobby that you've always wanted to do, but never thought you could do it (like learning the play an instrument, or paint, or anything!)
WARNING: No jumping off bridges or buildings unless its supervised by a liscenced professional and you're attached to a bungee cord ;)
Saturday, December 18, 2010
Today's challenge - donate some loose change to the CCFC! It could be the 85 cents in your couch, or five bucks from your wallet, every penny to the CCFC goes towards the cure! You can donate online at https://secure.ccfcfindthecure.ca/DonateGen.aspx?CCID=18&L=2&MSP=226 or by sending a check or money by following the directions at http://www.ccfc.ca/English/donate/post.html .
Who knows, your 85 cents could be the key to the cure.
Friday, December 17, 2010
Clarification: I am going home to Canada today.
I haven’t been home since mid summer when I left to come to Boston for surgery, this will be my first pilgrimage home with an ostomy. So much has changed in the last 18 weeks it doesn’t even seem possible.
College makes ‘home’ a dependent variable - is it the school year, or is it a break - because it depends. Really, I live in Boston, I live here most of the year. But I will always be from Nova Scotia - so the question begs to be asked, where is my home?
According to the saying, ‘home is where the heart is.’ But I don’t think that means where your heart belongs per say, I think it means where you are, where your heart is. If you are at home, or at peace, with yourself, then anywhere can be home.
If I can be so bold as to tweak the saying, ‘home is where the toilet is.’ A good bathroom can not be underestimated or undervalued, so as long as there’s a good toilet, almost anywhere can be home.
I am excited to do a million things at home. I haven’t seen my siblings in months, or my dog. I will be able to eat when I’m home, cook, visit people, start running, sleep in late, get my driver’s license. I will be able to live. That is remarkable, that is such a change.
Home sweet somewhere, here I come.
Today, we invite you to call your best girl or guy friend - or both! - and tell him or her how much you love them! Gutsy IBDers have Gutsy friends that deserve "I love you"s at the holiday season!!
Who are you going to call?
Wednesday, December 15, 2010
Already its day 4! Time is flying...only 9 more days until Christmas!
Todays challenge: Donate a food item to the poor!
This is a pretty easy one, there are so many ways to do it. Try something original, something out of the ordinary! It could be the way you donate it to what you donate! Let us know what you've done! :)
Enjoy the season!
It's time for challenge #3?
Today it's kind of easy, Say "Hello" to a random person. It could be as easy as walking down the street! Let us know if anything interesting happens!
Tuesday, December 14, 2010
In saying that, it’s never easy to date. Not only do I have Crohn’s Disease but I also have an Ileostomy, not exactly a first date conversation! The first guy I dated after I got sick was great about everything he looked it all up and found out everything he could, which was great because I still wasn’t 100% open about talking about it all. The next guy didn’t mind, as long as I was healthy, and so most of my relationships went. I think it took about a month before I told my first boyfriend about everything. I was scared of what he would think, what he would do, and whether he would accept it, and thankfully he did. I’m still scared when I tell a guy about everything. What if I fall for someone, what if I love someone and they don’t want to be with me because of everything. I know that he definitely isn’t worth it if he doesn’t accept me the way I am, but it still isn’t easy.
I learned that guys aren’t worth it if they don’t accept everything, but I learnt it the hard way. I dated one guy, and once I told him about everything, he seemed ok at first. I went to work, and he said while I was at work he would look everything up. Needless to say, I never heard from him again. I guess he got scared, maybe it was too much for him to handle, but it hurt. He could have done it all so differently, but he didn’t, and I had to accept what he did, and why he didn’t want to be with me. I think that made me a bit more cautious, I told guys quicker because I didn’t want to get hurt. I would tell them right away, that way if they wanted to leave then they could just take off before I got attached. I would no longer be hurt because someone didn’t want to deal with my disease. When it really comes down to it, they don’t have to really deal with it. They just have to understand what I’m going through.
I guess in the end as hard as it all was to accept it made me stronger. It made me accept everything that I have to deal with on a daily basis, and it made me realize that no guy, no matter how much you may like/love them, is worth a single tear. (And no girl is either.) If they love you then they wont care about anything, and if they care or it bothers them, then they aren’t worth your time!
“I have Crohn’s Disease, Crohn’s Disease does not have me!”
Ready for challenge #2?
The challenge (if you choose to accept): write a letter to someone that compliments them for the positive impact they've had in your life.
..... then tell us who you wrote to!
Sunday, December 12, 2010
Today marks the first day for the 12 days of the gutsy generation Christmas... and day 1 's task is to:
Give 5 hugs today.
There's no real rules as to who to give these hugs to... so get creative! And let us know who you shared your hugs with...
Hugs from me to me :)
Your Youth Advisory Council thought it would be a cool to count down the 12 days of Christmas - we begin tomorrow (or in 15 min, if you want to get technical :P ) and here is the basis of it:
Each day we will post on the blog and via facebook and twitter the themed activity for the day... so what could this themed activity be?! Well... you'll just have to wait and see! We're hoping we can all come together and get involved in these daily activities as we count down the days to Christmas - let's have fun with it, guys! Post and write your feedback on each activity! And if you have ideas - let us know too! Maybe we'll sneak it in between now and Christmas! This is open to everyone and most of these are 'Gutsy' themed ;)
Hope your Christmas shopping is going well, and you're taking time to begin to enjoy the holiday season.
Hugs from one individual living with IBD to another,
Friday, December 10, 2010
Although it may be no ‘MacBeth’, my red binder collection is my budding collection that will see an adoption of a third red binder today. What, you may ask, are these binders and what do they contain?
The simple answer: work. Each semester, I collect my best and favorite work from my classes along with important handouts and I cluster them together in a lovely little red Boston University binder. The goal: 8 red binders by graduation. Progress: right on track.
Many university classes have given way to the ‘green’ shove and have students submit work online. But at the end, I like to have a physically tangible object to hold and look back over. So I print essay after essay, syllabus after syllabus to file them for posterity in my red binder.
The red binder is an accomplishment - a Cesarean “I came, I saw, I conquered”. This past summer, my Grandad rifled through the books - dutifully reading every piece of paper I had slotted in there. It’s my bridge to my family - and ‘here-look-what-I-did-at-school’ for them to hold on to.
There are moments when you want to hold your arms up the sky and smile, when you feel like you’re in exactly the right place at exactly the right time. I have had so many moments like that during my time at BU, but especially this semester. I am right here right now, I fit into the world, and my work fits into that red binder.
I came. I saw. I tried. I worked. I conquered. And then I put it all in a red binder.
Monday, December 6, 2010
Some people, who i've met in person have found relief (even complete remission) when following the Specific Carbohydrate Diet popularized by ELaine Gottschall's book: Breaking the Vicious Cycle. You can check out her website at: http://www.breakingtheviciouscycle.info/ . This website tells you the theory that this way of eating is based on. Some people have found relief, others have not. But, if it could help you, even a little bit, I figured its worth the while - but firstly, do your research first, and make the decision for yourself. I myself have not been successful with it - but I thought if a large chunk of people have found relief, then why not try to spread the word if theres a high possibility it could help someone else? And for the people that haven't found success in it - what happened? If you feel like sharing - let's get the discussion going! Researchers are actually looking into this particular kind of diet and WHY it is helping some people.
If you want more information on it there's a popular site that people have checked out and found helpful: http://pecanbread.com/p/intro/nt/introhome.html .
Right now too, two guys have made a more modern style site that tries to help others enhance their success with this diet: http://scdlifestyle.com/
They have lots of recipes, and blog entries to learn more about this way of eating and the struggles you might face along the way. They have also recently been interviewing 'friends' (others with cool websites with more information and support for those trying the diet).
Two nice cook books that are popular on amazon are (I have a copy of these too - they have nice pictures):
1. Eat Well Feel Well - By Kendall Conrad
" When her daughter was diagnosed with a dangerous digestive problem that left her weakened and sick, author Kendall Conrad started searching for a way to save her child’s failing health. The answer came when a nutritionist recommended the Specific Carbohydrate Diet (SCD). Created by Elaine Gottschall, this revolutionary program is extraordinarily effective in relieving the debilitating and often painful symptoms of ulcerative colitis, celiac disease, diverticulitis, IBS, Crohn’s disease, and other common ailments. Simply by eliminating virtually all starch and complex sugars and eating a balance of smart carbohydrates, good proteins and fats, and essential vitamins and minerals, many people experience a complete restoration of digestive health. For Conrad’s daughter, the results were incredible. Thrilled with her daughter’s rapid recovery, she began creating recipes for delicious dishes for the whole family, following Gottschall’s guidelines, without sacrificing an ounce of taste or variety."
2. Healing Foods: Cooking for Celiacs, Colitis, Crohn's and IBS - Sandra Ramacher
The Crohn's and Colitis FOundation of America has even recognized its potential: http://www.ccfa.org/about/news/scd .
So, remember - I am in no way endorsing anything here - just trying to hear what other people have to say about this and spark dicsussion - So share something!!! Post a comment! I really want to be alive when we find the cure for IBD.
If you've used a complementary or alternative medicine therapy that has helped you - why not spread the word? There's a guy named Reid Kimball putting together a DVD:
As Taken directly from his website: (http://crohnsend.com/)
"WANTED: Crohn’s End is a documentary featuring people with Crohn’s disease and Ulcerative Colitis who have opted to use alternative treatments when nothing else is working. They have listened to their gut and took a proactive approach to ending their disease."
So, if you have found success with something, maybe you've wanted a chance to share it with others that have also found success too. You can here: http://crohnsend.com/.
Super exciting news: Do you want to see me in a DVD? lol, jk, I know you don't but, that Crohns DVD that I mentioned before is now available through the CCFC website. Order your FREE Copy at http://www.ccfc.ca/English/info/resources.html#dvd . Enjoy :)
Let me know what you think - loads of interesting topics with a realy focus on the positive side of Crohns - its loaded loaded loaded with inspiring stories - how great is that? :)
Friday, December 3, 2010
“Jennie,” he said, “you are very energetic and hardworking and smart,” he paused, “but you have to calm down.” My smile widened as he cleared his throat. He continued to explain my eagerness needed to be tamed, that the application would get in on time and that I had time to breathe.
I didn’t interrupt him, or correct him, though I could have. It wasn’t really about not being calm, it was about finally having the time and the health to do the project. If anything, I was finally calm because I could look at a calendar and not have to plan in flare ups and hospitalizations, surprising to me (but probably not to the non-IBD community) there is a lot of time to get things done.
Maybe it’s because it’s December now, which means an impending holiday break and a prodigal return home, or maybe it’s because it’s been over 16 weeks since my slicing and dicing. Or maybe it’s just because. Whatever the reason, I have had many flashbacks to my summer and all of the things that happened. First there was the little babies that I looked after, then a scope, then hospitalizations and needles and TPN and tubes and roomies, and Boston, and more tubes and needles, and surgery, and recovery. My biggest frustration throughout the summer was being unable to be productive. I hated sitting in my bed watching television for hours and hours on end, I wanted to be doing things in the real world and to be contributing to it.
So now that I am back on my feet, I don’t want to stop doing things. It is fulfilling and exciting to be able to rely on my body for once. My professor has a point - you have to be calm to see clearly and think clearly. But... maybe calm chaos isn’t so bad.
Take a deep breath, and get excited - you have the whole world waiting for you.
Wednesday, December 1, 2010
So... Maybe its just the person that I am, but Im ALWAYS looking for a CURE for Crohns (and Ulcerative Colitis) and I've been looking since I was 9 and went to visit a Naturopath. So I know the area of Complementary and Alternative Medicine (CAMs) is complex and there are many many treatments that fall under this realm but I really want to reach out with others that may have delved down this realm too... I want to make my next blog posts about different things that I've tried. Im really curious to know if anyone else has tried these things also. Im really curious to know what things have helped make their disease more manageable.... and I want to make this just a discussion, not a push for any such treatment... we're all different and what works for someone DOESNT work for everyone... I know this... I've tried lots of things.
So how about we delve into the first one: Probiotics. In my science undergrad at McMaster University I worked with Dr. John Bienenstock (One of the forefathers to discover the Gut-Associated-Lymphoid-Tissue - or the GALT) in his lab in Hamilton, called the Brain and Body Institute. There I did my thesis on the latest reviews on probiotics and commensal organisms (Bugs that are found in our gut). I was super super glued to everything I could learn on probiotics and these 'bugs'. I got to check out live intestine's in a waterbath. They were sectioned and placed in here and oriented so that they could be straight - and you know what? Peristalsis (The contraction in our gut that moves the food along) could be visible - how is this possible when the intestines were removed from the organism??? Welll.... It gut has its own nervous system! And it could last a day or two in this electrolyte-rich water bath. AWESOME! So I got to use electrophysiology (a fancy word for measuring the nerve impulses) to see what would happen if different concentrations of probiotics were put into lumen (or the inside) of the intestines... and guess what? Yup, you guessed it, probiotics (Lactobacillis) actually produced some results! But if there's one thing I've learned about science, lots of studies need to be done prove something.
Does anyone use Probiotics? Does anyone feel better using them? How do they feel better (or worse)? Is anyone or has anyone else done research with probiotics that they could share? Any stories to share? Come on guys! Share your story with other gutsy generation youth - we're here to help each other :) And possibly learn from each other.
Hugs :) ,
P.s. Theres some great articles on the www.ccfc.ca website - Check it out and keep up to date with the latest research!
Friday, November 26, 2010
They were very surprised - and to my relief no one fainted or went into shock - and they took me in their arms in a tight hug. I realized as I hugged them back that they too had been a part of my journey this summer and the past seven years. Bobby and Barbie’s son has had an ostomy for 50 years, and Sam and Sammy’s daughter-in-law has one too. Everyone was ‘bag-literate’.
50 years ago when Bobby and Barbie’s son was first sick, he met Dr. Crohn in New York. His parents were told to brace for his death by their doctors, and Bobby even recalled his then 6 year old son telling him that he knew he was dying. He soon had his surgery and did his best to move on.
So there we were, 50 years later, having a rather unlikely conversation at rather unlikely time. How many dinner parties with grandparents can you say ‘rectum’ without someone choking? Like so many grandparents, my Grandad is empowered by the printer and the computer, and he ran to get a printed copy of one of my blog posts that I wrote right after my surgery. The company applauded this and I smiled at my unlikely Thanksgiving.
I’d like to think that I’m partially Floridian - having spent not only a thousand vacations here but also a couple of months here for a dance camp. My Grandparents remarked at my lack of pills this time around, and once when I excused myself to go to the bathroom, my Grandmom said, “And now I don’t worry when you say that!”
Although IBD isn’t an infectious disease in an epidemiological sense, it is in a familial sense. My disease has affected so many people in my family, and their support has helped me rally so many times. Upon my arrival to Florida - literally on the way home from the airport - we stopped to pick up a bathing suit, for in the chaos of getting to Boston pre-surgery I had left all of mine back in Nova Scotia. We picked up a tankini - a dapper plum color - and I’ve been in the pool everyday. Pool-sides in Florida bring two quintessential things - pools (evidently) and shuffle board.
Forrest Gump said that life was like a box of chocolates. But I think it’s also like a game of shuffle board. You try your best to score, and sometimes others can knock you down. It’s okay to lose a few rounds, because it’s the game that matters.
In another 60 years, when I’m having my own Thanksgiving dinner with my friends and family, I’m sure I will be thankful for a million more things than I am today. And I hope so, so much that one of those things is that a cure has been found.
Tuesday, November 23, 2010
As promised, here is what I had to say at the Crohns DVD Launch. This Launch was great - I got to touch base with nurses that took care of me almost 10 years ago at Sick Kids Hospital when I was going through my toughest bout of Crohns Disease. I remembered them like it was yesterday! They were fantastic - I still have all the pictures with them. The 2 weeks I was there at Sick Kids were 2 weeks i'll never forget, but it certainly makes a huge difference to have caring, loving and supportive (and fun:) ) nurses and doctors to care for you while you're going through what seems like life's biggest obstacle. Thank you.
I think this is a great DVD and I think it’s a great tool that Abbott has been so kind to put together for all those living with Crohn's Disease. I've had Crohns since I was 9 years old and im now 24. I was diagnosed in the hospital, after a visit to the emergency room. At such a young age I had to find the strength and will to pull through all the tests, PICC lines, drug side effects and body changes that I underwent at the beginning. It was a rush all at once and I was terrified, depressed and hopeless. I felt like my life was going to end, and at some points when even though I was on complete bowel rest and hadn’t eaten anything in a week and was still passing lots of blood in my stool, I actually did think my life was ending. And maybe that’s when I thought about all the things I wished I had strived to achieve in life but put off. Or the times when I told myself I wasn’t strong, beautiful or brave enough to do something. And as I lay there in my hospital bed thinking this, I told myself that if I did make it through this, then I could do all those things. Well I shocked myself when got to first eat again, and when I started feeling better and better, little by little until I was back at school. Somehow I seemed to mesh back into school and life like nothing had happened, but something big did happen. I found myself searching for people I admired and wanting to get to know them, know how they lived, how they did the great admirable things they did and find out where and how they started because I wanted to do things like that too. I wanted to contribute to the world how they contributed and wanted to be someone that can help a lot of people and accomplish something great that Im truly passionate about. And since then, and with the re-igniting force I feel after every flare-up, Crohns has propelled me in this direction- to challenge myself in ways Ive only dreamed and to push towards experiences that require a great deal of determination, strength and health. With this, some of my accomplishments have been obtaining a science degree, becoming a yoga instructor and personal fitness trainer, accomplishing a 200km Cycle known as the ride to conquer cancer. And my goal this year is to complete the Ride to Conquer with my sister and complete the Death Race, a 125km run split between 5-members through the mountains in Alberta, Canada. I've also found an increased interest in learning more about myself and my body, and finding a way to continue to do what I love now that Im living with Crohns.
Its not always a perfect world and it can be discouraging. But Im inspired by meeting others with Crohns. Sometimes I meet others that have experienced a lot more pain and struggle than me and it reminds me that I am not alone and what I think as the 'worst ever experience' may not be the case. Family and friends are very important to me and having that support means everything to me. Emotional support is really really helpful. There are periods where you feel like you want to give up, and somehow and sometimes there is something or someone that inspires you to push on, see through it, keep breathing (like Tom hanks said in Castaway) and somehow turn it all around and live to the fullest potential.I don’t know how it happens and everytime it happens it’s somehow a different experience.
When I was first diagnosed officially at Sick Kids, the nurses there were amazing . Funny enough at the end of the two weeks I was there I didn’t want to go home and when I was home I missed being there very much – and I know this was because of the amazing emotional support I felt from the nurses there. They were my friends. I would have loved to have received a video from my nurses teaching me more about my disease and hearing others with Crohns offer tips and support for me. I remember being so overwhelmed and at times am still overwhelmed with the diagnosis. And when I went to look for information, I didn't know where to look. There was information everywhere and products to 'cure it overnight' etc. Having a CD like this would have really helped me and answered my main questions, but also inspire me! There's a very inspirational story in this DVD that has even propelled me to push to great heights and goals. And the truth is, as a part of the CCFC Youth Advisory Council I meet constantly individuals all over Canada with absolutely inspirational stories and groundbreaking achievements like the ones shown in this DVD. If a person has been diagnosed with Crohns, they cant forget what they love to do (sports, travel, etc) and its important for them to learn how their body is working, whats happening and any lifestyle changes they could make that could help, such as nutrition and exercise. Theres a lot of information out there, and some of it isn’t always right, so having this DVD put out and nurses like you can get out the right information to the newly diagnosed individuals living with Crohns Disease. You know how many questions we have, and where our insecurities lie. It can be very easy to focus on the negative, but focusing on the positive is critical – its important to make a conscious choice to be positive. I think there can be a lot of negative literature out there about crohns, but I think this DVD is something really positive. And I hope it will touch individuals to make the personal choice to change their lifestyle for the better, eat more consciously, take time to relax and to honour and love the skin their in. Thank you Christine Montgrain (Abbott Laboratories) and Dr. Krishna Menon for this opportunity.
I wanted to give CCFC and all the gutsies out there an update: Abbott Labs has made a fantastic fantastic Crohns DVD - its educational, modern and features REAL individuals living with Crohns Disease and has inspirational stories - its truly amazing. Rob from weneedideas.com is featured in it as his story is absolutely inspiring... I want to climb mountains after this! This summer I helped out in the making of this DVD - it was super cool being in a film studio. I spoke about sexuality and relationships in relation to Crohns Disease (CD) and try to offer tips and support in this area to others living with Crohns. My GI specialist is also in there, Dr. Menon and he does a great job at explaining a lot of the topics relating to CD. The CCFC and IBD clinics/nurses will have a copy of this - so be sure to get your free copy soon!
Also this summer, some really great people from across Canada had the chance to get together to be a part of a Crohn's Advisory Board for Abbott to evaluate the DVD and suggest ways to enhance Crohns/IBD awareness. Elliot (CCFC's YAC Board member last year was on this team - I'm going to see if I can get him to write a bit about his experience at the Ad Board :) ). Its something really great - it's great to see how much is happening in regards to shedding a positive light on IBD - and it all starts with the right information and education - so be sure to check out the Crohns DVD and let others know about it too :)
P.s. I dont know if anyones interested. But at the Crohns DVD Launch (In Toronto) to the IBD nurses in the area, I spoke about my experience with Crohn's and how I think this DVD is really something great. I'd love to share it :)
Sunday, November 21, 2010
Thank-you; to express gratitude, appreciation, or acknowledgment.
It’s such a simple two-syllable word to say, but yet we often don’t find the time to say it. Why not? Since I for one find it hard to say thank you after the fact, to just randomly go up to someone and say “thank you for EVERYTHING you’ve done for me”, I’m going to do it now, I’m going to say thank you to one of the people in my life who deserves to hear it every day!
Thank you for absolutely everything you have ever done for me, before and after I got sick, but mostly for when I was sick. You sat beside my bed, wiped my tears, cried with me, watched movies with me, laid with me, rubbed my back, cut my toe nails, washed my hair, and many other things that probably don’t need to be brought out specifically online. I don’t find the time to say it, but you definitely deserve it.
My mom was my main support when I was sick, she took time off work to go to St. John’s with me and slept in a chair beside my bed for 2 weeks, and then she again took time off work to go back to St. John’s for 3 months. She was by my side every day. She was the last face I saw before going into surgery, and usually the first face I woke up to. She was there when I learned how to stand up again, when I learned how to walk again. She was there through everything. My parents always said that they would take it all away in a heartbeat if they could, but I wouldn’t let them. I could never be as strong as they were, I could never be that supportive beside someone’s bed. I would be too scared, and helpless. And, I definitely wouldn’t be the person I am today without going through what I went through. But I also wouldn’t be where I am without my parents. The quote I live by now is “I have Crohn’s Disease, Crohn’s Disease does not have me” and it was my mother who first said something along those lines to me. My Mom taught me how to laugh at my disease, when the ostomy would make noise we would say it was talking to us. When something would go wrong, I would look at my mom and say “How come every time I see the light at the end of the tunnel, it decides to cave in and make me dig again?” She was there, and that was all I could ask for, a helping hand, a supportive smile, and a friend!
I guess in the end I just want to say that one thing that most of us find hard to say…
“I have Crohn’s Disease, Crohn’s Disease does not have me!"
Friday, November 19, 2010
I AM THANKFUL for the small children that I work with at a local preschool and their never-ending curiosity, big hugs, and their inability to remember my name (“Remember, it’s Jennie, it rhymes with penny”).
I AM THANKFUL for my university being extremely understanding and empathetic and supporting me to help me succeed, for all the professors who believe in me and give me amazing opportunities.
I AM THANKFUL for the people who thought up ostomy surgery (though I’m sure they were probably thought to be a little crazy at the time). It has not only saved my life, but given me a new change at living.
I AM THANKFUL for my family who would do anything for me. I have seen their incredible love at work and I am so lucky to have people like that protecting and looking out for me.
I AM THANKFUL for the amazing friends that laugh at my IBD jokes and also let me just be me.
I AM THANKFUL for the CCFC and the YAC for introducing me to the possibilities of change and the power of connection.
I AM THANKFUL for food - for crackers, and bananas, and cereal, and soy milk, and pretty much everything else. I am mostly thankful that I can eat it again.
I AM THANKFUL to be able to have the chance to make a difference and raise awareness about IBD. I hope that I can achieve more awareness for our cause. I am thankful to everyone who supports this cause.
I am thankful for so, so, so much. Life can be messy, and sad, and disappointing, and unfair - but it can also be very, very beautiful.
Tuesday, November 16, 2010
Thanks to everyone for their support at Just Gotta Skate which was successfully held yesterday! It was a fun event as always, and we were glad to see so many faces!
- Kimberly Wozniak, Mississauga Chapter, ONTARIO
Monday, November 15, 2010
Friday, November 12, 2010
This is a perfectly reasonable argument - besides, who wants to relive the memory of an accident by wearing the same pair or panties? Not I, and so I have tossed many pairs in my life, but in particular this summer.
I had annoyingly dwindled my supply down to a few pairs, and would only wear ones that I hated so that I wouldn’t destroy the ones that I liked. It seems silly, and perhaps bizarre, to become so attached or defensive of an underwear collection, but when it’s the literal first line of defense between me and my disease, it gets personal. For my birthday, my parents got me some underwear - black ones, I might add.
And when I restocked my supply post-surgery, I thought that would be that, mission accomplished. How wrong I was. I didn’t think it was still possible to ruin underwear when I could physically no longer go to the bathroom ‘normally’, oh, but it is.
Sometimes when I haven’t sealed the adhesive of the ostomy bag quite correctly, leaks find a way to ruin my pretty new underwear. Perhaps the worst ‘surprise’ of a leak is in the middle of the night, when I can feel the dampness, and I jump from the bed, suddenly fully awake. Now the underwear is ruined at the hem, and usually it permeates straight through to my pajama bottoms. But there is a miracle in all of this - my sheets have not once gotten dirty (hopefully this won’t serve as a jinx).
And therefore, in an attempt to diminish the embarrassment of the whole situation, I toss the dirty underwear. I carry an extra pair on me at all times, you can’t be too prepared, scout’s honor.
My best underwear advice? Love your underwear, buy the colors and patterns you want, and here’s hoping to fast bathroom access when you need it!!
Wednesday, November 10, 2010
My Grandfather, Cliff, had been sick as long as I can remember, however, he was always energetic and out going. I remember pieces of my childhood with him, like picking carrots out of his garden, washing them under the house and eating them. I remember going to the mall with Nana and Cliff. Just, the little things.
However, one memory will always stand out to me. It was August 2006; I had just graduated High School in June and was starting College in September. I had already lost lots of weight, which we assumed was because I Had started eating better. My mom and I went to the senior’s home to say Goodbye to Cliff before we left to come home for the year.
I can still picture this moment. Cliff was sitting in the foyer amongst others; mom and I sat down with him and had a visit. He continued to ask mom if I had everything I needed, he asked if Nana gave me anything and finally, he told my mom to look after and take care of me. Needless to say mom and I left in tears as usual. I didn’t quite understand the depth of his questions and comments until a year later.
In January 2007, I was diagnosed with Crohn’s Disease. I was very sick until the end of July 2007. My mom and I came home the first week of August after 3 long months. I was still walking with a cane, which was Cliff’s cane, and didn’t have much energy.
That October, at the age of 92, Cliff passed away. I finally thought about the last time I saw him and realized the depth of our visit.
He knew I was sick, he knew I would need help, and he knew I would need my mom. I still think to this day that he waited until I was healthy to pass away. This might sound selfish but I thank him for this. I don’t know if my mom would have left my side to go to his memorial and if she didn’t I would never have forgiven myself. Also, I don’t know how I would have handled not having her by my side. Thank you Cliff!
Not a day goes by that I don’t think of him in some way. I feel lucky to have known him for the short 19 years that I did, and I’m glad to have had him in my life!
“I have Crohn’s Disease; Crohn’s Disease does not have me”
Monday, November 8, 2010
Cheers to better health,
Friday, November 5, 2010
I was used to being the sick one amongst my peers at school, that was just the way it was. But to be the sick one amongst sick people meant more somehow - I felt more validated, more sick almost, because I was sick enough to deserve the attention and concern of other sick individuals. It’s almost as if we go through cycles, when one person is sick, everyone gets sick, emails of details exchanged between all of us. We attempt to offer solace and humor to each other, but above all, compassion and friendship.
Life is not fair - and I know that. But, why do others have to suffer? Isn’t it enough that one person suffers? It is heartbreaking to realize that others have been in the same amount of pain as I have been, it is harder to witness and endure when it is a close friend compared to myself. I wish so much that I could take away their pain and let them live their lives free of IBD.
My IBD friends have made the biggest difference in my life, and I owe so much to them. They deserve only the healthiest lives, and yet, many of them are sitting in hospital beds or on toilets, far from the ideal situation. And so, I could care less about a cure for myself, it’s for all of my friends, and those I haven’t met yet, that I will fight forever for.
Will you fight with me?
Thursday, November 4, 2010
Although I have noticed some things have changed. I used to go to public bathrooms and just think, “gross, this bathroom is dirty” or “wow, this bathroom is kind of clean”. However lately I’ve noticed myself thinking “I wouldn’t want to spend long in here” or “This bathroom wouldn’t be TOO bad to spend any length of time in”. I also get joys in clothes that don’t show off the circular print of my ostomy, before it was the cool clothes, now it’s the “hiding” clothes.
I was recently looking at dresses to order for my sisters wedding, and my dad picked out a dress, which would have looked nice without the ostomy, but mom and I both looked at each other and said nope. The way that my mom and I would pick out a dress was so differently from how my dad would. The way your life changes because of these disease is uncontrollable, but I think the way in which you handle and overcome the changes is what make your disease truly yours. I’ve learned how to dress the way I want, but yet still incorporate the things I need in my clothing. I know it sounds weird, but it’s just how I’ve learned to live with having an ostomy and not let it bother me.
“I have Crohn’s Disease, Crohn’s Disease does NOT have me!”
Monday, November 1, 2010
So! Keep your eyes PEELED for this! I believe it will be available through the CCFC and/or your specialist. You’ll see me in there too J Talking about relationships… I hope you find my experience helpful to you! Let me know when and if you see it, and let me know what you think! Lets get a good discussion going!
Friday, October 29, 2010
I was thrilled to see the character of Mary, a woman who had appeared in last season’s big finale, come back to the hospital for her ostomy reversal. Particularly because I feel a part of the ostomy community, I was enthralled with her story line. The episode oscillated between a few story lines, one including a man getting a bilateral arm transplant. I understand that sewing new arms on a man beats a bag in terms of excitability, but still, both stories deserved to be done right.
I was slightly dismayed that they didn’t show a bag on Mary’s abdomen, but yet they showed the arm transplant. They didn’t explain why she had an ostomy to begin with, or any of the technical words they were using. And the worst part was that they decided to have her surgery - the one hour reversal surgery - to render her brain-dead and essentially kill her. Now, I understand that those things do happen after routine surgeries, but I was so upset for this particular character’s death.
I spent the last few minutes of the show on my feet, basically stomping in revolt, trying to take some deep breaths. I was so upset, and while I’m overly sensitive since I have an ostomy, it was frustrating and upsetting to see the continuation of the tradition of veiling GI disorders and treatments.
Still enraged by the story line, I vented to my friend and her roommate. The roommate blinked back at me when I made a comment about my ileostomy, and asked what it was. It was the perfect opportunity to launch into what the show had not - information and awareness. I explained the terms to her, allowed her to ask questions, and she sat back in her desk chair and expressed her amazement at the procedure. In five minutes I had laid the ground for a new tradition of openness about my ostomy for others.
It sounds dramatic to say that we’re fighting for awareness - but we are. It’s a battle to change the stigma and change the traditions of how people think. But we need to. And we will.
And before we know it, the useless tradition we’ve all habituated to of being sick will be obsolete, because our battle will have won us a cure.
Thursday, October 28, 2010
I’ve learned however that I’ve become who I am today because of my IBD. It doesn’t stop me from doing what I want to do, it doesn’t intimidate me, and it hasn’t molded me in any way. It has however made me stronger, made me more determined, and shown me just how lucky I am to have the friends and family I have.
I went in this summer for my sixth surgery, and by now I have a good relationship with my surgeons, I asked her, just minutes before my surgery if she could do me a favor. I got some funny looks from her, as I was calm, and very serious as I looked at her and said “If you’re going to cut me open again, can you at least make a design out of my scar?” She just laughed, got up and walked away. But it’s not just myself who laughs, my family laughs along with me, and I truly learned that after my surgery, as my three sisters sent me a Candy Bouquet, with a card reading “Dear Colleen; We hope you like you’re new hole”. I couldn’t stop laughing, and I now keep that card in my wallet!
I think laughter has been my counselor, my best friend, and my stress reliever. I have found ways of making myself laugh; I have found ways of cheering myself up. I can now look back at almost anything I’ve gone through and laugh about it, even public accidents! I think I’ll do anything to ensure that I stay on top of my disease, to ensure that I’m in charge, and laughter has been the best way so far!
“I have Crohn’s Disease, Crohn’s Disease does NOT have me!”
Monday, October 25, 2010
I know this probably sounds like something small, and maybe we expect this from everyone, but when you've experienced what it feels like when people don't understand, and still aren't sure if they can 'catch' IBD, you really appreciate the people that do. And I'm so grateful for that. Just getting started on Humira has been an incredibly scary time for me... but it's made it easier having friends and family that truly understand what you go through with IBD and know how to be there for you. It's great to really harvest those relationships with the people that understand, and tell them how much they mean to you (YAC... you mean alot to me :) ). Friendship and support like this is worth more than gold... to me anyways :P
Friday, October 22, 2010
I thought about this as I went to my favorite breakfast place with my best friend this morning. The restaurant, or more diner, is a little hole in the wall, barely four tables squeezed into the back, an itsy bitsy bathroom hidden in the kitchen. We both order the same thing every time, my order omitting the dairy from the french toast. As we ordered this morning, the waitress grinned at us, took the menus, and genuinely welcomed us back.
My friend and I laughed at this, bemused that they had remembered our faces and our chronic orders. And I began to think about the different times I had been there last year.
There was a time when I was very sick last year that I was fed up with eating in my room and not being able to do anything. So I readied myself with underwear in my bag and was prepared to have an accident in public, if only I could be out in public amongst the living. I ate where I wanted to eat, did what I wanted to do. Now, this wasn’t necessarily the smartest thing to do, but I did it anyway. I can recall sitting at the breakfast place and running to the bathroom every few minutes, almost completely depleting the toilet paper supply for the whole place. Another time, my GI called me as I sat there with my hot french toast. I had to come in to get a test, and so after breakfast my friend and I proceeded to the hospital.
The last time I’d been was with my family before they took me home for summer break. And you feel like you always feel before summer break: relieved that the year is over, excited, older, and on the verge of something different. Only, I thought that the something different was my new medication and not the impending surgery that I would soon face.
Throughout my medically-induced food drought this summer, I dreamt of the french toast that I would eat, only wanting to be healthy enough to sit with my friend, eating our favorites, and laughing. At times during the summer, it seemed as though I would never get there, but it still kept me going.
Even though it took us almost two months to go and have breakfast there this semester, hearing ‘welcome back’ seemed like the best way to be officially and fully inducted back to Boston for another year of school. I am finally back.
When I finished the amazing french toast and looked up at my friend, with her polished-off plate, I smiled, knowing that I would be back here throughout the year, ostomy on my abdomen and health on my side.
Thursday, October 21, 2010
In my perfect world, I would be a healthy, colitis free individual. Unfortunately, my perfect world is just not an achievable place. Yet. I say yet because I know there will be a cure soon. There are many organizations (like the CCFC), medical teams, research projects (such as the GEM project) and even major units (think McMaster) trying their hardest to find a cure. For now though, I will have to wait for my perfect world.
So , with Crohn’s and Colitis month approaching, I’m asking everyone to remember all of us who can’t quite have our perfect world. Cross your fingers for us, spread the word, all with hopes that a cure will soon be found. And hopefully then all those suffering with an IBD may finally have their perfect world.
Monday, October 18, 2010
Four days is all we had – but even though it was short there was the sense of community, that at least one person has gone through the same experiences with these diseases. I know that when I was growing up with my disease – all I wanted was someone my own age to talk to, sometimes you just can’t ask your parents, doctor or your friends. They try to be supportive – but it’s not the same.
I suggest that if you would like to meet youth affected by IBD in your community contact your local CCFC chapter and start or join a youth council! The sense of partnership is truly amazing.
Edmonton YAC Rep
Sunday, October 17, 2010
This past weekend, I had the amazing honor of spending time with fellow IBDers in both Toronto and in Texas. As always, I am stunned by how quickly bonds can be formed amongst a group affected by IBD. An introduction goes as follows: “Hi my name is Jennie, I’m from Nova Scotia, I’ve had Crohn’s for seven years, and I just had ostomy surgery for it this summer.” Within seconds of meeting someone, you have absorbed their most personal information and all of a sudden, you share a thousand private and life-changing moments in your mutual histories. And from then on, you can hear the IBD accent.
It’s an imaginary accent, of course, the way things like Prednisone and Remicade and surgeries are discussed, the way things like toilet paper and public accidents and cheesy bathroom jokes are laughed about. It’s the timed pause given after a ‘how-are-you’ that marks both concern and support, the careful listening displayed for another IBDer. The accent isn’t as vocal as it is physical.
Everyone has had a different experience, and everyone has a story to share. I never fail to find talking with an IBDer more exhilarating than blast-off into space - for some brief, precious time, I’m sitting face to face with someone who understands my scariest and most triumphant battles, someone who speaks the same language and shares the same accent.
Meeting youth affected by IBD has changed my life. It has given me the confidence and hope to dream of a future as bright and any youth can, to hold tightly to my dream and never let go. The successful lives showcased before me has always been, and continues to be, a remarkable demonstration of what one can accomplish through determination and belief in oneself.
To everyone that I have met living with IBD: thank you for your bravery, thank you for your persistence. You are a role model for me and I hope that I can one day return the favor to another young IBDer.
Thank you for speaking with your IBD accent.
Friday, October 8, 2010
A question you’ve probably been asked more times than you can count - by doctors, teachers, parents, friends, coaches, and on and on and on. Do you say the same thing to each of them? Do you even tell them the truth?
This is a question I struggled with for a long time. Close to my diagnosis when I was beginning to finally understand what being an IBDer meant, if someone asked me how I was, I would launch into a massive spiel about Crohn’s and the treatment and just about every tiny detail. But that ended up frowns and looks of disgust on the faces of those who had asked, so I backed off and relented to the usual answers - ‘good’, ‘fine’, ‘thanks for asking.’
One day, I was asked by a friend’s mom how I was doing, but she then proceeded to interrupt herself and apologized, asking if I even wanted to be asked. I looked at her and said that if she was asking because she wanted to know the answer, then she could ask as much as she wanted, but if she was asking because she thought it was the polite thing to do, then I didn’t want to be asked.
In certain social circles growing up, everyone knew that I had IBD. People placed their own expectations on me - that I’d be unable to handle commitments, etc. - without ever first asking to see how I was and what was really going on. I had people that I baby-sat for hold their kids to them asking if I was contagious. I would smile tightly and answer what they didn’t ask - how I was.
When I came to college, my biggest to-do was to first be Jennie, and then Jennie with IBD, but first Jennie. It seemed like a simple enough task, but I was floored by how difficult it became - almost every memory in the past seven years relates to being sick in some regard. But I’ve done my very best, and think that I have succeeded.
My answers to ‘how are you doing’ have varied in the past - from simply ‘I’m doing’ to ‘Not so hot’, but nonetheless I try to answer honestly (and appropriately) for each person that asks me. I know now that in general the doctor wants the gritty details, the parents want the emotional part, the teachers want to know if you can sit in class, and so on.
I cringe at the simplistic phrase when I’m asked it, and try to decode that look of concern on the person’s face to see if it’s real or fake. But I will answer the question, because if I do my job properly, I can make even the polite askers good listeners.
So, how are you doing today? I’m listening.
Friday, October 1, 2010
I’ve been anxious to really eat for the past several months. The slightest reference to food can make me salivate more than Pavlov’s dogs. The majority of the summer, I existed on apple juice, which is neither terribly exciting nor palatable. And so when I was able to begin eating real food after my surgery, it was absolutely overwhelming. I had developed a highly specialized bucket list of food of things that I needed to eat. Some cravings were understandable, like the chocolate cake I had listed, some were results of successful product placement, like a Happy Meal (I have a cool Batman toy to prove it).
It was challenging to build up - from softer foods to more exotic things, like roughage. It was a slow process and the pacing was driving me crazy, it seemed to be the ultimate test in self-control. And little did I know a larger event was looming.
You can’t get off completely unscathed from a major abdominal surgery, and one night I found myself face first in my toilet upchucking any progress I might have made. I got myself to the ER with my newly blocked insides and proceeded to spend the next few days in the hospital. I academically understood the need to stop eating for the adhesions and be put on bowel rest and I complied easily with this. But by the second or third day when the nausea was gone and the hunger was back, I was less patient. First came the tray of clear fluids. I took one bite of Jell-O and put it back down. After months of eating clear fluids, I simply refused to do it anymore, I would throw up just from the thought of it. And so, again, I existed on pitchers of apple juice for a while.
But there was the promise of crackers hanging in the air. I had the nurses page the doctors, my hope and energy for the day depending on eating the crackers. After they told me I couldn’t have the crackers yet, I started to cry. I was so hungry and all I wanted was crackers, it was literally consuming all of my thoughts. Crackers, crackers, crackers - I wanted my freaking crackers.
A doctor came in a little later with exciting news - they were giving me crackers, semi-against orders, but nonetheless, I was getting crackers. I cannot communicate my sheer excitement when she brought in saltine and graham crackers. I ate so many crackers, failing at pacing myself, but happy as anything that I was once again eating.
The pacing is hard, and the temptation is harder. Food is unimaginable when you haven’t had it in so long. I’m still working on my food bucket list, and adding to it as well!
And all I can think when I eat is - food, glorious food!!
Tuesday, September 28, 2010
I think it all started when I got strep throat for the first time. I got this terribly, painful sore throat in a matter of hours. I popped Tylenol and Ricola like it was going out of style, but my throat did not get any better. Finally I went to my doctor who prescribed me some antibiotics and I was all better in no time. Goodbye strep, easy as pie.
My next somewhat lengthy and very icky experience: sinus infections. As I had gotten a few in my childhood, I wasn’t worried about these, however, getting 6 in one year was not the greatest experience. Anyway, those were the minor bumps in my communicable infections area. Soon things started to go downhill quickly.
One day I found an itchy, painful spot on my stomach that I thought to be a bite of some sort. However, one became 2 which became 5 and soon I had this line of so called bites. Finally one day I showed my mother who happens to be a nurse who said “Errrr, Lesley, I think you have shingles.” I had to google that. But I went to the doctor who confirmed my mother’s diagnosis. Things were getting interesting. Between some more strep and sinus infections I would get shingles again. I was 23 and I had had shingles twice, and had to be hospitalized because of it. My doctor literally used me as a subject to speak on at a conference. I was a medical wonder.
Miraculously I managed to avoid contracting H1N1 ( but I can honestly say my hands have never been so raw from washing and I also avoided most people like the plague). However, not be disappoint my body, I’ve made up for that absence with an array of other interesting things. I’ve had fungus infections on my head. I get reoccurring bouts of thrush in my throat. I’ve had bacterial infections in my nose. I have even had mulluscum contagiousum (which kinda sounds like a Harry Potter spell one could cast).
All in all, in my 6 years of being immuno suppressed, I’ve contracted some interesting, and somewhat gross, infections. Needless to say, when I get an especially bad strep throat, or sinus infection, or odd infection I’ve never heard of before, I really miss my immune system. Who knows, maybe the next time I’ll say “ENOUGH WITH NO IMMUNE SYSTEM”. But until then, I will continue on my weird little way, contracting whatever comes around. However, please know immune system that wherever you are, I miss you.
Friday, September 24, 2010
Having IBD is a fragile balance of emotional hope, physical rest, and medical intervention. No matter what anyone says, we can’t wish away our illnesses or overcome them just with determination - IBD is a disease of the body, not the soul. But we still do hope, and cross our fingers that the next treatment will work, but instead, maybe we should be knocking on glass.
It still carries the gesture of luck, it’s still a physical action, but life with IBD is more glass-like than wood-like. By this I mean we have to be gentle with ourselves, if we knock too hard we might break - we have to be conscious of our bodies and cannot push ourselves past what we can actually handle.
Life isn’t fair and wishes don’t always come true. But that’s no reason to stop hoping or to stop fighting for a better tomorrow and a better treatment.
So regardless of what you’re wishing for, remember to first have faith in yourself and to never stop hoping - we are knocking on glass waiting to be answered.
Friday, September 17, 2010
When I was first diagnosed with IBD, I half-believed that I had become transparent and that anyone on the street might be able to tell that I sick with an intestinal disease. In the classroom, I wondered who knew what was wrong and who suspected that something was different. And even though I was on the executive of student governments and excelling at school, I quickly became branded as the sick girl. I’d like to think that I helped to change the way people thought about illness; yes, I missed a significant amount of school and had funny tubes coming out of me, but I contributed greatly to the school environment and graduated at the top of my class.
And so when I decided to go to Boston University, I expected excitement and encouragement from my peers. But I shrank back to my sick persona in their eyes and they encouraged me to stick around home so when I was sick, my parents could help me out. It seemed that no matter how much I did, no matter how much accomplished, I couldn’t wash off the ink that had branded me.
Now I stand looking at myself in the mirror in my dorm at BU and I smile at the slight bulge under my shirt - the branding of my ileostomy. I try to adjust my clothes which are now too big and think about all the cookies I should be eating. The internal branding of illness I once had is now on my skin, a real tattoo of sorts to show the world. I can’t scrub it off, but I don’t want to. It doesn’t brand me as sick, it brands me as a survivor, as a fighter.
We’re all like dictionaries: the title may be one word, but there are millions in each of us. Even if my word is sick, I can still be determined, hardworking, empathetic, and a thousand other things. Our one descriptive word can change, and that is within our power. No one labels us, for we label ourselves, and just like we change our clothes, we too can change how others see us and how we see ourselves.
In other words, I may be broken, but I'm not breakable.
Friday, September 10, 2010
I own all of the seasons and have watched them all multiple times - plus seeing them on television when they aired. I love the characters, the wit, the cases, and the careful philosophical undertones to the show. Even though I know realistically that Dr. Meredith Grey does not exist, the characters are like friends and I glean comfort and support from watching them time and time again.
I like many of the quotes from Grey’s, and one recently struck me as a sentiment I have struggled with in the past. In the sixth season opener, Dr. Owen Hunt tells a trauma patient who is refusing her treatment that she was to ‘work’, that ‘now is the time to work’, to paraphrase him. As an IBD patient, getting similar news of having to be the one to rebuild our lives after each flare up, it can be endlessly frustrating. I often want to stomp my feet and scream, asking the doctors if they have rallied back from flares or if they think that their advice is helpful. It’s not like we asked for IBD, why should we have to be the ones to work so hard just to attempt normalcy?
Of course there is no answer to that question. The world is not a fair place and bad things happen to good people, and sometimes people who have done no harm suffer vast amounts by no fault of their own. No matter how unfortunate or cruel the world seems, it’s not going away. So sometimes we have to ‘work’ to overcome the bodies we are trapped in, but more times than not, that work is absolutely worth it.
The medical world is not a replica of Grey’s Anatomy and there aren’t happy endings at the end of every story. We don’t have soundtracks to our hospital stays and we can’t flip ahead in the script to see how things will turn out. But I continue to watch, to re-watch, to love the characters and laugh with them, because it is my Grey’s therapy.
To leave you with a memorable and frequent quote from the show, as neurosurgeon Derek Shepherd says, “it’s a beautiful day to save lives.”
And remember, each day is a beautiful day to live your life.
Sunday, September 5, 2010
Sometimes I wonder who was the genius who sat down and came up with the GI terminology. First of all, gastroenterology does not contain an ‘i’ so GI doesn’t make a whole lot of sense. But throw in terms like ‘rectal stump’ and we’re all set - we officially have the oddest language paired with our intestinal diseases. An ostomy nurse recently informed me that my output in the bag was not poop, but instead deemed ‘effluent’. This made me laugh for two reasons - 1) it sounds like a pretty name for something gross 2) it is terminologically incorrect to say ‘poop bag’, I have an ‘effluent bag.’
This thought brought me to a larger ironic one - by the time my IBD was finally understood to be something horrible and debilitating, I had my surgery to have my ostomy to make everything sunshine and rainbows. When it was recognized for what it was, the organ was removed. Isn’t it sad that in order to get the sympathy and understanding of the severity of my illness that I had to have a five foot organ chopped out and a bag hanging off of me? It wasn’t ‘good enough’ to explain to people that I had a serious chronic intestinal disease, it wasn’t ‘good enough’ to display the medications, it wasn’t ‘good enough’ to spend all my time in hospitals - because I still looked fine, because I didn’t look any different than the next kid. Now I have the shock value - I can whip out terms like ‘loss of an organ’, ‘7 hour surgery’, ‘ileostomy bag’, ‘blood transfusion’ and on and on to get the understanding that had escaped me for so many years. And while that’s useful now, it’s ridiculous that it had to come to surgery to get that empathy. In a million ways, having an ostomy for me is much better than being ill with my IBD. I don’t want to be pitied for having an ostomy, that is not the point. But I realistically know that many people who do not understand IBD or illness will use their pity expressions when they look at me, I will be the one that they whisper about, quietly and ignorantly explaining to someone that I have a ‘poop bag.’
For all of us, IBD is something that happened to us - at least in the beginning. For me before my diagnosis, it was sudden pain and blood loss and was something I could not control. But IBD does not have to be something that continues to happen to us, at least not in terms of how we understand or relate to it. My ostomy was not something that happened to me, it was something I asked for, it was something I wanted - and is something now that I am grateful to have. While my parents fret about why I had to have IBD in the first place, my thoughts are elsewhere - they’re past the diagnosis and the years of painful treatments, because I will not let my illness be something that continues to batter me. For me, deciding to have the surgery was perhaps the first real choice I had in my IBD history and it was one I took seriously. It was the right choice for me, and it’s exciting that I made a real choice in combating the disease that had riddled my body for so long.
In the time to come, I won’t frown if someone refers to it as a ‘poop bag’, I won’t correct them into repeating ‘effluent bag’ after me. I won’t snap at the people who give me the pity look, or judge the people who only understand my medical past if I have to use the shock value terms. I won’t get annoyed when the computer highlights ostomy as a misspelled word, or get frustrated if I have to explain it to someone. And that’s all because, like it or not, IBD and it’s treatments do not have the same high profile exposure as some of the other chronic illnesses do. I can’t get upset about people not understanding if I’m not willing to be on the front lines spreading awareness. IBD sufferers deserve to be recognized long before surgery is needed, and that is something we continue to work towards.
Once the IBD vault has been opened, people find that so many people are affected by the disease. We need to swing those vault and bathroom stall doors open if we’re going to transform the understanding the public has about IBD. I know it can be done, I have seen improvements in the last few years. And swinging door by swinging door, we will be recognized and we will find a cure.
Saturday, August 28, 2010
Most every IBDer is an adapter since we do not experience perfect health 24/7. We learn how to push ourselves and we do the seemingly impossible, usually on a daily basis, to function as ‘normal’ people when we’re ill. More times that not, we adapt.
And thus, I have. But it’s a whole different ball game when it’s after surgery, or so I have found. Adapting no longer means really participating in your life as much as it means you empty the bag often and watch a lot of Everybody Loves Raymond. And that’s okay, that’s called recovery, not a word I’m used to and not a sideline I’m used to either.
So I am on a yellow brick road - a very long one - but on one nonetheless. It’s twisty and the bricks aren’t all even, but I’m on it. What I am so quickly tripping towards? A full recovery, a day when I can stand for hours, when I can get back to school and be independent. I’ll be there soon, with scraps on my knees, but I will be there.
Nothing and no one is perfect. I recently campaigned for smaller ostomy bags since the ones I had were massive and impossible to dress with. And the new bags are great, much smaller and much better for wearing real-live non-recovery actual clothing. The downside - the smaller the bag the more frequent it needs to be emptied. Which is fine, but it poses a potential issue at night since it fills up quicker. And since I’m already have the habit of sleeping poorly down-pat, checking the bag throughout the night isn’t a problem. But it occurred to me this morning as I was cleaning up the bathroom after spilling the contents of the bag on the bathroom floor by accident, that there’s still some curve balls left in the learning.
But what I do know for sure is that no matter how many curve balls there are, I won’t strike out - because there’s no score-keeping, no limit to falling down, and no one-way to do it right.
So off I go - tripping into the distance - trying to do it as gracefully as I can.
Tuesday, August 24, 2010
Sometimes I find that my Crohn's gets me down. I think about wanting to go and do things with my friends, or try a new place for dinner, but the fear can sometimes be too much. And I've realized as much as I look beyond IBD, the truth is I will always have it, and there's really nothing I can do about that.
In one point in my book, the author talks about being generous, not so much buying things for your loved ones, but being generous in your thoughts and in your actions. She came up with a theory that people are much more excited to hear they've been thought about in a special way rather than getting the latest gadget or what-have-you.
This really rang true with me the other day...
Honestly, there are about a billion and one reasons why my mom is awesome. I could probably write an entire book, and perhaps one day I will, but more recently, she brought out her A-game of awesomeness....
Perhaps it was all the commericals or maybe it was a little bit of good-will on my part, but sometime in my early teens, I wanted to donate blood. When I found out that I had to be at least 17, I was annoyed, but I figured I could wait a few more years. On my 17th birthday, the exact day, there was a blood drive. I was so excited, I marched right over, told them I was a first time donor, filled out my forms, and got in line. When I was 12 I was diagnosed with Grave's Disease, and after all the paperwork I had to tell the nurse what medications I was on for that, and turns out because of what I was on, I was on a temporary "cannot donate list" until I had been off the medication for a while.
I was upset, all I wanted to do was pass on a favour, give blood, and perhaps make someone's day, somewhere, a little brighter and I couldn't do that.
I wasn't giving up home. In university I had radiation to remove the function of my thyroid. I was off the medication and excited to go back, get that first time donor sticker, fill out those forms, and actually make a difference. That's when I got even more bad news. Between my 17th birthday and my thyroid radiation, I had been diagnosed with Crohn's Disease. When speaking to a nurse from Canadian Blood Services, she told me that because of the autoimmune nature of the disease, I couldn't donate. It wasn't because of medications or anything like that, it was because of the disease. My chronic condition. I had been black listed from giving blood.
This made me a little more upset that even I had expected. I wanted to make a difference, this seemed like the easiest way. I got annoyed when I found out how many people didn't do it, it was so easy, and it saved so many lives. And here I was....tainted.
Three years come and go, and I hear the commercials on the radio and feel a little pained that I cannot donate. That's where mom comes in. She called me the other day and said she had something to tell me. She had been keeping it a secret, but on the day she called she had just come from Canadian Blood Services. She said that all my conversations about giving blood had really struck a nerve with her and hit home, so on that particular Tuesday she went and donated blood, in my honour.
I couldn't believe it. I felt as though it had been so long since I brought it up. But there it was. She even set up her next appointment to go again in the fall. So, my mom, my hero. Once again she saves the day. She may have saved my day, saved my dreams, but even more importantly, she saved lives.
So I guess as the story goes...I can't do everything, but with the help of people who care of me, I am limitless.
Yours in good health,
Nevertheless, when my IBD flares up, everything changes. It’s as if all my trigger foods begin to haunt me. All I can think about is popcorn and corn chips. And French fries. And burgers. Offer me a brownie, and I’ll pass. Bring me some chocolate to make me feel better, I won’t touch it. When experiencing a flare up I live for fried food and salt.
And so begins the big battle. Everyone knows when you’re sick, you let yourself eat whatever you want. There is no point in suffering any more by denying yourself whatever empty calories and heartburn you desire. However, when you know that eating these foods will cause you endless pain and hours on the bathroom floor, what do you do? Me? I eat them. What can I say; I am truly a sucker for punishment. I will go to A&W and order that mozza burger and fries, and I will eat it all. And I won’t even want dessert. And then I will go home and be in excruciating pain for 24 hours. I will make my flare up worse, all for a burger. And since I am keeping nothing down (or in) anyway, I convince myself that eating fried food is the only way to ensure my body is getting enough calories for my survival. So I will eat more burgers and fries and popcorn and cool ranch Doritos. It’s a vicious cycle really. The sicker I get, the more I want these foods. Of course, I keep eating them (for my survival!!) and I get sicker and sicker until finally I am medicated and then I get better. Then when I’m healthy, it’s back to chocolate and brownies.You'd think knowing all this would help prevent future occurrences, but I'm a weak individual when it comes to food. However, one can hope.
Anyway, until next time (and next flare up) Mr. Burger and fries, I think it is time for a brownie.
Saturday, August 21, 2010
They looked at me and smirked slightly, not believing that I wasn’t nervous. I smiled and nodded, attempted a joke, but I could see the doubt in their eyes. Understandable, I suppose, as I was minutes away from being wheeled into an OR and having a 5 foot organ clipped out of me forever. But I promise that I wasn’t nervous.
Okay, that’s a bit of a lie in some ways. I was nervous to wake up after the surgery and be consumed by nausea from the anesthesia. I was nervous that my family would have a meltdown during the 7 hour wait. But I wasn’t nervous about losing the organ.
I know that sounds insane but it’s true. When you’ve had every drug and been labeled a ‘primary non-responder’ (which I swear is GI term for loser), losing the organ that has tried to destroy your life for 7 years doesn’t seem like a huge loss to mourn.
I can’t remember falling asleep exactly - whether or not I had been put under in the OR or in the holding area, I just remember waking up and rolling around in agony, moaning, as the nurses put the pain controller button in my hand and coaxed me to press it. A hefty 10 hours after my family had sobbingly left me, they rushed to my side, patting my hand and smiling. And so began my journey into the recovery, the post-surgery battle back on my feet.
After a week of two steps forward and one back, I was finally released from the hospital, worn but smiling. They wheeled me out with my army of massive balloons and family, and for the first time in a long time I felt the August sun against my face. My Grandad stood by my side and whispered that these were happy days. I smiled at him, not mentioning the scars across my abdomen, the pain, or even the loss of my organ - because he was right, I was going home and I was on my way to health, and that means happy days.
My Mom had emailed some of my doctors letting them know about the surgery. Most of the responses contained best wishes, but one also contained something that took me by surprise and slight horror - sympathy. A doctor was passing along her sympathies to me. It shocked me to say the least since there was nothing to be sorry for, only a future to be excited for. I found it almost offensive; anyone who knows what my IBD history has been would offer congratulations in a heartbeat and never sympathies.
One of my roomies in the hospital, a witty older woman who served as my pseudo Grandmom for several days, offered the following advice off a magnet on her fridge: With enough caffeine, anything is possible. While I’m sure that is true, I think that also with enough determination (and perhaps medicinal drugs), anything is possible. There isn’t a scorecard in life, no referee to blow the whistle when you fall down. But that’s okay, because what matters isn’t as much what happens to you as it is how you understand and interpret what happens to you. I lost almost my height in an organ, I will never go to the bathroom ‘normally’ again - that could make anyone terribly upset. But - I’m giving myself a future by letting go of my colon, I’m freeing myself of the pain and that makes this experience a positive one.
So, you see, my Grandad is perfectly right - these are happy days.